Terminally Ill Adults (End of Life) Bill
Friday 29th November 2024
(1 year ago)
Commons ChamberTerminally Ill Adults (End of Life) Bill 2024-26 Read Hansard Text Watch Debate Read Debate Ministerial Extracts
14:08 - The House divided: - Ayes: 330 / Noes: 275 - Question accordingly agreed to.
Mr Speaker
Before I begin proceedings, I would like to say a few words to help manage expectations about business today. More than 160 Members have indicated that they wish to speak in the first debate. It is not customary to impose a speech limit on private Members’ Bills, but I hope that after the Member in charge of the Bill and the speaker after that, Members will restrict themselves to about eight minutes in the first instance; that includes taking interventions. The Chair will review the guidance as the debate progresses. I may need to ask for shorter speeches to enable more Members to contribute. I should make it clear that the Chair retains the right to impose a formal speech limit, but I would rather colleagues help each other.
At about 2 pm, I will call Front Benchers to make their comments, and then we will move to end the debate. I have got to manage expectations. Not everyone will get in. I will try to get in as many people as possible. This is one of the most important debates that the House has had, so it is about being considerate and respectful of each other. Let us listen to each other. This is the time for the House to show itself at its best.
The reasoned amendment in the name of Dr Ben Spencer has not been selected. I call Kim Leadbeater to move the Second Reading.
Kim Leadbeater (Spen Valley) (Lab)
I beg to move, that the Bill be now read a Second time.
Thank you, Mr Speaker, and thank you to everyone who is attending this hugely significant debate. It is a privilege to open the debate on the Terminally Ill Adults (End of Life) Bill, a piece of legislation that would give dying people, under stringent criteria, choice, autonomy and dignity at the end of their lives. I welcome the debate on this hugely important issue.
Let me say to colleagues across the House, particularly new colleagues, that I know this is not easy—it certainly has not been easy for me—but if any of us wanted an easy life, I am afraid we are in the wrong place. It is our job to address complex issues and make difficult decisions. I know that for many people this is a very difficult decision, but our job is also to address the issues that matter to people. After nearly a decade since the subject was debated on the Floor of the House, many would say that the debate is long overdue.
For my part, I have tried incredibly hard to ensure that the tone of the debate has been—and continues to be—robust, of course, but most importantly respectful and compassionate. I am pleased that, for the most part, that has been the case. I can be confident that that same tone of respect and compassion will be adopted by colleagues today, whatever views they hold. That is particularly important as we have people in the Public Gallery who have a strong personal interest in this issue. They hold a range of views. Some of them have lost loved ones in difficult and traumatic circumstances, and others are themselves terminally ill.
I want to pay a huge and heartfelt tribute to those families and to every single person who has contacted me about this issue, and in many cases shared their own very personal stories of loss and death. I know from my own personal experience of grief that telling your story over and over again takes energy, courage and strength. I am incredibly grateful to them all. It is their voices and their stories that have inspired me.
Such stories are difficult to hear, but it is vital that they are heard as they are at the heart of the debate. They show that the law is failing people. Where that is the case, we have a duty to do what is right to fix it. Those here today or watching at home are dealing with the real consequences of the failings of the current system. I will start by recounting just a few of their stories.
Warwick was married to his wife Ann for nearly 40 years. She had terminal peritoneal cancer, which meant that she could not breathe properly. She spent four days gasping and choking, remaining awake throughout despite being given the maximum dose of sedatives. She eventually died of suffocation. She had begged Warwick to end her life, but as he stood over her with a pillow he could not do what she asked as he did not want that to be her final memory of him. Ann had excellent palliative care, but it simply could not ease her suffering.
Tim fell in love at first sight when he met his wife Louise—he proposed after just three days. But Louise got cancer, twice, and at the end, the morphine simply could not control her pain. In desperation, she managed to smash a small glass bottle and tried to take her own life, not realising that her toddler daughter had got into bed with her. Tim found her. He says,
“You get to a point where you stop praying for a miracle and start praying for mercy.”
Former police officer James waved is mum off as she embarked on her final trip, to Dignitas. She had terminal vasculitis. James desperately wanted to accompany his mum and hold her hand during her final moments, but he knew, because of his job as a police officer, that it was just not possible. Indeed, she insisted that he must not go with her, so she went alone—no one to hold her hand, and no proper goodbye or funeral. Those are just a few examples of the heartbreaking reality and human suffering that far too many people experience as a result of the status quo. the public know this.
I have always been keen to ensure that my politics stays rooted in the world beyond Westminster. It is clear that public opinion is very much in favour of a change in the law. Polling shows consistently that around 75% of people would like to see the legalisation of assisted dying for terminally ill, mentally competent adults. These findings are significant, but it may not be that surprising that most people believe, as I do, that we should all have the right to make the choices and decisions we want about our own bodies. Let us be clear: we are not talking about a choice between life or death; we are talking about giving dying people a choice of how to die.
Let us examine what that choice currently looks like. I do not have a legal background but I have always been driven by a strong sense of injustice. If I see a problem, I will do everything I can to try to solve it. Indeed, in this job, we all do that every week and every day, whether here in Parliament or in our constituencies. When four former directors of public prosecutions, including the Prime Minister, two former presidents of the Supreme Court and many lawyers all agree that the law needs to change, surely we have a duty to do something about it.
Intentionally helping another person to end their life is currently illegal under the Suicide Act 1961, and carries a maximum prison sentence of 14 years. This includes family and friends helping someone who is terminally ill to die, both in the UK and overseas. Existing guidance does not stop people from being investigated by the police, adding fear, guilt and further trauma to grieving families. The law is not clear, and it does not protect individuals, families or medical professionals. That drives people to very desperate measures.
What about coercion? Senior King’s Counsel have said:
“There is currently no established system for identifying abuse or coercion in advance of a person’s death or for helping vulnerable people to make end of life decisions.”
Kevin McKenna (Sittingbourne and Sheppey) (Lab)
I have been a nurse for more than a quarter of a century, and in that time I have worked mostly in intensive care as a specialist. I have worked with compassionate and skilled, well-trained clinicians who have been taught to spot coercion—it is fundamental to our practice. Does my hon. Friend agree that it is wrong to suggest that clinicians cannot spot coercion in these cases?
Kim Leadbeater
My hon. Friend makes a very important point. I thank him for it, and for his years of service as a nurse. I have spoken to many medical professionals about this issue, and they say that this is part of their job. They are very skilled and they work closely with patients, particularly dying patients, to assess their needs and to have those difficult and delicate conversations. As the KCs said, at the moment we check for coercion in cases where people have taken their own lives—when someone is dead. The Bill would make coercion a criminal offence with a sentence of up to 14 years.
Surely, by putting a legal framework around this difficult situation, we will provide an extra level of safeguarding. One psychotherapist, who is terminally ill herself, said to me recently that coercion happens when things are hidden away. The Bill would bring things out into the open. Surely, that must be safer for everyone. Let us look at what the absence of a robust legal framework looks like.
Simon Hoare (North Dorset) (Con)
I thank the hon. Lady for giving the House the time to debate the Bill this morning. She references coercion, and I understand her point about the two medics, but medics will not be able to see or hear everything at all times. People will not be put beyond challenge, because subsequent to the death, if a relative claims coercion of another relative, investigation will remain. I am entirely unclear how, without peradventure, two clinicians can claim that there had been no coercion at any point.
Kim Leadbeater
The hon. Gentleman has made the point for me: within a robust system, we will check for coercion, but we do not have any of that now. At the moment, the person will be definitely be dead. We have to look at the status quo. Putting in layers of safeguarding and checking for coercion must be better than the system that we have now.
Alicia Kearns (Rutland and Stamford) (Con)
Colleagues are right to raise questions around coercion. I hosted a phone-in on LBC where people rang in and said, “I feel like I have to end my life because I recognise how difficult it is for my family to see me suffering.” The limit in the Bill, however, is that someone must have only six months to live according to two doctors and a judge, which I genuinely believe massively reduces the risk of coercion. Are we really saying that people are so desperate to bump off their families that if they were told that they had six months to live, they would escalate the process and do it sooner?
Kim Leadbeater
The hon. Lady makes an excellent point—she is absolutely right. The very strict criteria in the Bill add extra layers of safeguarding, which, again, we just do not have at the moment.
Richard Burgon (Leeds East) (Ind)
I have the deepest respect for my hon. Friend, but one thing that concerns me is societal or systemic coercion. At the moment, elderly people in our society pay thousands of pounds a month to be in a care home. What reassurances can my hon. Friend give that an elderly person in a care home who has been given six months to live would not think to themselves, “I’m a burden. I have been given six months to live. If I end my life now, I can save my family between £25,000 and £55,000”? That really concerns me.
Kim Leadbeater
As I have said, at the moment, we have no idea whether that person would take action because we are not having those conversations. By getting two medical professionals and a High Court judge involved, we would be putting this out in the open. Evidence from other jurisdictions shows clearly that coercion tends to happen the other way; what tends to happen is that families try to prevent the person from making the choice of an assisted death.
Several hon. Members rose—
Wera Hobhouse (Bath) (LD)
Is it not the case that the conversations that patients will have with doctors will bring out whether they have been coerced or are suffering intolerably? The criteria are about suffering, not whether somebody worries that they are a burden.
Kim Leadbeater
I agree absolutely. Those conversations, which are not taking place at the moment, are very important. I will make some progress.
There has rightly been a lot of discussion about palliative care in recent weeks, and I am convinced that a significant amount of that discussion would not have taken place without the introduction of the Bill. It is a long overdue conversation, and I am very pleased to see it happening.
I have met with the Association for Palliative Medicine, Hospice UK, Sue Ryder and Marie Curie, and last week I was delighted to attend the inaugural meeting of the all-party parliamentary group for hospices. I also attended the fantastic Kirkwood hospice, which serves my constituency of Spen Valley. I pay tribute to the dedicated staff and volunteers across the country in the palliative care sector, who do some of the most vital work in society. We must do more to support them, and I look forward to working with the Government and colleagues across the House in that important endeavour. That is why I have included in the Bill a requirement for the Secretary of State to report to the House on the availability, quality and distribution of palliative care.
Of course, assisted dying is not a substitute for palliative care—it is not an either/or. We have some of the best palliative care in the world in this country, and, when it can meet the needs of terminally ill people, it is second to none. However, when it cannot, surely the choice of an assisted death should be one component of a holistic approach to end of life care.
The comprehensive report by the Health and Social Care Committee, published earlier this year, found no indications of palliative care deteriorating in quality or provision in places where assisted dying had been introduced.
Jim Shannon (Strangford) (DUP)
Ever mindful of what the hon. Lady has said about the criteria, I remind her that Belgium started off with a simple project like the one she refers to but it deteriorated and expanded to include sufferers of dementia and under-18s—children. What guarantees do we have that this legislation will not end up with a situation like that in Belgium, in which case anything goes? Is that what the hon. Lady wants? I do not want that. Does she?
Kim Leadbeater
I thank the hon. Member for his intervention, but let us be very, very clear. Huge amounts of research has been done by the Health and Social Care Committee, and indeed by myself and others. The model being proposed here is nothing like what happens in Belgium. It is nothing like what happens in Canada. There are strict, stringent criteria, and if the House chooses to pass the Bill, those criteria cannot be changed.
Mark Pritchard (The Wrekin) (Con)
I am grateful to the hon. Lady for giving way and congratulate her on the measured way in which she has conducted this debate over the last few weeks. Whatever side of the House and whatever side of the debate, I would like to recognise that—it is not always the case. But is it not the case that the Bill crosses a new and irreversible medical red line for doctors and nurses? Is it not the case that in other Bills we have seen in this House over the years, the safeguards invariably become obsolete over time, and so the safeguards in this Bill, however well meant, should be seen as temporary safeguards and not immutable safeguards?
Kim Leadbeater
Absolutely not. I respectfully disagree with the right hon. Gentleman. In countries where a Bill of this nature has been implemented, the safeguards have been in place and the boundaries have never changed. I will come on to talk about that.
Kim Leadbeater
I will take one more intervention and then I must make some progress.
Sir Oliver Dowden
I thank the hon. Lady for giving way. I have a great deal of sympathy for the arguments she is making. However, we have seen, time and again, excessive judicial activism taking the words in this House and expanding their meaning into places we had not foreseen. What reassurances can she give that the words in her Bill will be respected by the judiciary and that we will not find ourselves in a decade’s time in a totally different place that this House did not intend?
Kim Leadbeater
I thank the right hon. Gentleman for his intervention. The courts have repeatedly put this issue back to Parliament. This is not their domain. This is the legislation. There are strict criteria.
Coming back to palliative care, in situations where pain simply cannot be managed, the result is deaths that are so horrific that the person themselves can spend hours, and in some cases days, in unimaginable pain as they die. I want to bring the debate back to the issue that we are trying to solve. For their loved ones, no matter how many joyful and happy memories they have, they also have the trauma that comes from watching someone you love die in unbearable agony and fear. That memory stays with them forever.
Rebecca’s mum Fiona developed metastatic brain cancer at the age of 69. She had very good palliative care, but her pain could not be managed, and she died begging and screaming for assistance to end her suffering. Her family and the medical team treating her cried beside her bedside as it took her 10 days to die.
Lucy’s husband Tom was 47, a music teacher with a young son. He had bile duct cancer which obstructed his bowel, resulting in an agonising death. Tom vomited faecal matter for five hours before he ultimately inhaled the faeces and died. He was vomiting so violently that he could not be sedated and was conscious throughout. Lucy pleaded with the doctors to help. The doctor treating him said there was nothing he could do. His family say that the look of horror on his face as he died will never leave them. Lucy now has post-traumatic stress disorder, which is quite common for families who lose loved ones in such harrowing circumstances.
Rachel Taylor (North Warwickshire and Bedworth) (Lab)
I thank my hon. Friend for the powerful and moving stories she is telling. A constituent of mine watched her mum suffer from pancreatic cancer. Unable to keep any food down, she basically starved to death. Does my hon. Friend agree that that is no way to see a loved one die? Does she also agree that we did not come into this place to shy away from difficult choices, but to listen to our constituents and make better laws for everyone?
Kim Leadbeater
I thank my hon. Friend for her intervention, and I am so sorry to hear that story from her constituency. We all have stories from all our constituencies, and she is absolutely right that we are here to make difficult decisions. On her example there, I have been astonished by the number of people who have been in touch with me to tell me about the terminally ill loved ones who have starved themselves to death out of desperation—something that takes far longer than we may imagine and is just horrific for everyone involved. That is currently legal, and doctors are required to assist the patient through this agonising process. How can we allow that, but not a compassionate and humane assisted death?
Blair McDougall (East Renfrewshire) (Lab)
I join the right hon. Member for The Wrekin (Mark Pritchard) in commending my hon. Friend for the way she has made sure that this binary debate has not been a polarising one. I started the debate where she is now, but I have moved to opposing the Bill by the stories I have heard of disabled people who have had “do not resuscitate” put on their medical records without their permission, or who have been stopped by strangers in the street and been told, “You would be better off dead.” I know she will say that we are voting on the specifics of her Bill, but we are also voting on a principle. Does she agree that there should be a precautionary approach, and does she honestly believe the legislative process gives us the time to be sure that we are making the right decision?
Kim Leadbeater
I thank my hon. Friend for his intervention and I will come on to some of those points later in my speech. Let us be very clear: the title of the Bill refers to terminally ill adults, not disabled people or elderly people, as another hon. Member referred to. The criteria are very clear.
I come back to the status quo, which is the problem we are trying to address. If people want to avoid the trauma of some of the harrowing circumstances I have described, they can have an assisted death—just not in this country. If they have £10,000 or £15,000, they can make the trip to Switzerland or elsewhere but, because of the current legal position, it is often a deeply distressing and very lonely experience, shrouded in secrecy, with people feeling like criminals as the fear of prosecution hangs over them.
Ilana’s husband Crispin had late-stage motor neurone disease. He was paralysed, and Ilana is a wheelchair user, but at his request she took him on a traumatic and difficult journey to Switzerland. She describes the intense stress and anxiety she felt due to the total secrecy of their plan—and we can only imagine what the journey home was like, on her own, with an empty seat beside her.
There are also those terminally ill people who take matters into their own hands. Gareth’s father Norman served in the Welsh Guards. He was a strong man, but his final five years were full of pain and discomfort. He had prostate cancer, which he lived with for 15 years. He was given good initial hormone therapy and chemo, but the cancer spread everywhere and the pain could not be eased. One day, when it all became too much, he went into his garden with the gun he owned and shot himself. Gareth’s sister rushed to his house and found him. Gareth said his father just wanted the pain to stop.
Then there is Peter, from Mirfield in my own constituency, who stopped me in a car park a couple of weeks ago to tell me the harrowing story of his beloved wife, who was diagnosed with metastatic cancer aged 52. The treatment was ineffective and her symptoms were unbearable. She took an overdose of her medication, and Peter found her and took her to hospital. She recovered and he brought her home, but the following day she made another attempt to take her own life, in a way that is too awful to describe. Peter found her dead, and he spent the next eight hours being questioned by the police.
It is estimated that more than 600 terminally ill people take their own lives every year. Often patients will store up medication. Josh, a 33-year-old from Huddersfield went to coach his local kids’ rugby team one Saturday and came back to tell his mum all about it. He found her dead. Lisa, who was terminally ill, had stored up her medication and taken her own life.
Our former colleague Paul Blomfield, the previous MP for Sheffield Central, has campaigned tirelessly on this issue since his dad Harry took his own life in 2014, alone in his garage, after being diagnosed with inoperable lung cancer. Language matters: Harry was not suicidal; he loved life, but he had watched too many of his friends have lingering, degrading deaths and he did not want that for himself. But, like the others, he could not tell Paul and his family of his plan, as they would have been complicit and could have faced prosecution. How many precious days and weeks did Harry miss out on as a result of having to take action while he was still physically able to do so? Hearing these stories is not easy, but it is important.
Lloyd Hatton (South Dorset) (Lab)
What I have been struck by in recent weeks as I have listened to Members from across the House is the clear agreement that the current situation is neither sustainable nor dignified. Almost everyone in this House agrees that the status quo is unacceptable in terms of dignity, palliative care and end of life. Given that, does my hon. Friend agree that today’s debate is about how we depart from the unacceptable situation that we currently face? Is today’s vote not the first stage of an important discussion about we improve the end of life for hundreds and hundreds of people across this country?
Kim Leadbeater
I wholeheartedly agree. I am setting out what we are dealing with now. This cannot be right, and surely we have a duty to do something about it.
Kim Leadbeater
I am going to make some progress, if that is okay.
Some of the most important voices in this debate are, of course, those of people currently living with a terminal illness. Having a terminal diagnosis is perhaps one of those situations where it is very hard, if not impossible, to know how we would feel. I have met many terminally ill people over recent weeks and every one of them is in my thoughts today.
Sophie, who is here today, was diagnosed with stage 4 secondary breast cancer, which has spread to her lungs, liver and pelvis. She is allergic to opioids, so she knows that her pain is very unlikely to be able to be managed. She has a 17-year-old daughter. All she asks is to have the choice to say goodbye to her daughter at a time of her choosing, in circumstances that she can have some control over, and for her daughter to be able to remember her as the vibrant, positive woman she is.
Nathaniel, who also joins us today, has stage 4 incurable bowel cancer, which is now in his liver and brain. Like many of us, Nat says that he does not know whether he would choose an assisted death or not, but he simply cannot understand why anyone would want to deny him the choice. He says:
“I wish to live as fully as I can and for as long as possible. But when the time comes”,
Nat also wants
“the right to die with dignity and compassion”.
Another very emotional lady came up to me at a recent interfaith event. She and her husband thanked me for putting the Bill forward. She said, “Kim, I am a proud Christian and I am guided by my faith. But I also have terminal cancer and I want the right to choose a compassionate death.”
There has been much discussion about the views of people who hold religious beliefs. I fully respect those beliefs and do not intend to say much more about this, other than that I know there are a range of views within faith communities. Indeed, some of the most powerful conversations that I have had have been with people of faith, including in my own constituency. People of different religions have said that although they would not choose an assisted death for themselves or their family, who are they to stop someone else who may want to make that choice?
Kim Leadbeater
I will make some progress, if I may. I hope that I have set out the problem that clearly exists. Now allow me to set out how the Bill can address that problem and, most importantly, do so safely and effectively.
If the Bill were to become law, it would contain the most robust and strongest set of safeguards and protections in the world. Very strict eligibility criteria and multiple layers of checks and safeguards are embedded in the Bill, none of which, as we have seen, exist at the moment. I made a conscious decision to name it the Terminally Ill Adults (End of Life) Bill, rather than anything else. That title can never be changed and ensures that only adults who were dying would ever come within its scope. As such, the Bill is not about people choosing between life and death; it is about giving dying people with six months or less to live autonomy about how they die and the choice to shorten their deaths.
The Bill does not apply to people with mental health conditions. It does not apply to the elderly. It does not apply to people with chronic health conditions, and it does not apply to disabled people, unless, of course, they have a terminal illness, in which case they would and should be entitled to the same rights as anyone else.
Daisy Cooper (St Albans) (LD)
One group of people who are not often talked about are the learning disabled. Clause 9(3)(b) says that if an assessing doctor has any doubt as to the capacity of the person, they may refer them for a further psychiatric assessment. If the Bill is voted through today, will the hon. Member engage in a debate about whether that language should be strengthened from “may” to “must” and whether the training and experience required of the assessor should be strengthened as well?
Kim Leadbeater
The hon. Lady makes an excellent point and highlights a community who we must consider in light of the Bill. I would absolutely be open to that conversation in Committee; it is a very valid point.
There are different views within the disabled community. As Professor of Disability Research, Sir Tom Shakespeare says that it is unacceptable that people with disabilities continue to face social stigma and inequalities, but that it would be a mistake to conclude that we should oppose legalising assisted dying for terminally ill people until those wider problems are fixed. He says that it is paternalistic and wrong to imply that inequalities will be resolved by reducing choices, and that a clear, transparent legal framework for end-of-life choice is better for everyone. He is right. There is, of course, still work to do in the fight for equality for people with disabilities, but once again it is not an either/or. I will campaign alongside many others in this place for those rights, but I will also campaign for the rights of terminally ill people, because their rights are as important as anybody else’s rights.
Barry Gardiner
I have huge respect for the hon. Lady for the way that she has conducted this debate over the last few weeks. My concern is that she has focused today on the individual and the individual choice, but we are here to legislate for society as a whole. In legislating, what we are saying if we pass the Bill is that it is okay to take that choice—[Interruption]—and there will be some people who have six months of their life to go who will then feel, “Ought I to do this? Is this something that I now should do?” That brings into play a whole set of considerations—“Is it better for my family? Is it financially better for my family?”—in ways that, at the moment, are out of scope. Rather than simply focusing on the individual suffering, which we all recognise is acute, we must broaden the debate to the impact that the legislation will have on society as a whole.
Kim Leadbeater
I thank my hon. Friend for his intervention. I suggest that the Bill will give society a much better approach towards end of life. We are already hearing conversations about dying and death which I do not think we have heard enough in this country. We have to take a holistic view. Indeed, that is what happens in other countries and other jurisdictions. Having those deep and meaningful conversations about death and dying is really important. My hon. Friend’s comments bring me on nicely to the protections and safeguards in the Bill.
Mr Toby Perkins (Chesterfield) (Lab)
A decade ago, I voted against a similar Bill, because I felt that perhaps it was not perfect and there were more things that I needed to know. My hon. Friend is right that we have not talked about death for the 10 years since or considered any legislation. The truth is that if we vote against her Bill today, it will be the end of the conversation once again for another decade.
Kim Leadbeater
My hon. Friend is absolutely right. How many people will go through the situations I have described if it is another 10 years before we address this matter?
Several hon. Members rose—
Kim Leadbeater
I am not going to take any more interventions, I am afraid, because I am conscious that lots of hon. Members want to speak; I know Mr Speaker is conscious of that as well.
Under the Bill, any terminally ill person who wants to be considered for an assisted death would have to undertake a thorough and robust process involving two doctors and a High Court judge. No other jurisdiction in the world has those layers of safeguarding. The person requesting assistance must have mental capacity and a settled wish at every stage. That means they must repeatedly demonstrate that they understand the information relevant to their decision, the ability to retain that information, and to use or weigh that information as part of the process of making the decision. We know that capacity can fluctuate which is why it is assessed at every step of the process.
Melanie Ward (Cowdenbeath and Kirkcaldy) (Lab)
On that point, will my hon. Friend give way?
Kim Leadbeater
I am sorry but I am not going to take any interventions, as I need to make progress.
The court must speak to one of the doctors and can hear from anybody else they deem necessary. If there is any evidence of coercion, the court will not approve the request, and if evidence emerges subsequently, the court order could be revoked. It is also important to note that the person can change their mind at any time, with periods of reflection built in. Having consulted at the highest levels in the judiciary and the medical profession, I know that they can and will fulfil those safeguarding responsibilities and that they have the expertise to do so.
Let us be clear: as my hon. Friend the Member for Sittingbourne and Sheppey (Kevin McKenna) said earlier, this is not brand new territory for doctors. Doctors, working in partnership with other clinicians, are already required to manage complexity in end-of-life decision making. I followed the request of the British Medical Association that doctors should be under no obligation whatsoever to participate, but if they do participate, they will receive appropriate training and support. Doctors should be able to use their professional judgment when and if a conversation takes place, taking their cue from the patient, as they do for many other issues. I welcome that patient-centred approach. Many doctors feel the change in the law would safeguard clinicians and patients by making everything explicit.
When it comes to the detail of what assisted dying would look like, we have the benefit of drawing on the experience of 31 jurisdictions around the world. I could talk extensively about the international experience of assisted dying. The Health and Social Care Committee report did a brilliant job of that, and this Bill has looked at best practice as well as models which I and many others would not be comfortable with our having here in England and Wales.
Reflecting on their experience, clinicians in Australia say:
“through deep and meaningful conversations between doctors, patients and their loved ones we can dispel fear, reduce suffering, bring death and dying out of the shadows, and so allow patients and their families a better quality of life and quality of death”.
As one Australian Member of Parliament said:
“We have brought ‘behind-closed-doors’ practices into the open and given dying people meaningful, transparent choices. Crucially none of the fears that were put forward as reasons not to change the law have been realised. The status quo was broken and assisted dying works.”
Evidence from around the world shows that the option of having an assisted death actually lifts the fear that terminally ill people have, and that many never actually use it but are able to make the best of the time they have left due to the comfort and reassurance that it provides.
People talk about a slippery slope, but the Health and Social Care Committee found that not one jurisdiction that has passed laws on the basis of terminal illness has expanded its scope. [Interruption.] That is absolutely true. As the courts here and in Europe have repeatedly made clear, Parliament is sovereign. This Bill could not be made any broader through any judicial process.
Speaking of process, with reference to the Bill, having listened to what I know are genuine concerns of Members about ensuring that we get this legislation right, I commit to the House that if the Bill passes Second Reading today, which I sincerely hope it does, I am minded to move a motion that gives the Bill Committee the power to take oral and written evidence in order to ensure that a thorough approach continues to be taken. That is not normal procedure for a private Member’s Bill, but I think that that is the right thing to do. I also reassure colleagues that the Bill Committee will meet over a number of weeks, meaning that there is ample time for full consideration of the details of the Bill, including amendments. The Committee will be representative of the views and make-up of the House. Let me be clear: that will mean there will be representatives of different parties with a range of views on the Committee.
As the Leader of the House said at the Dispatch Box just yesterday, and has said several times, the Government will, of course, work with me to ensure that the Bill is workable and operable. That will quite rightly take time, and I have included in the Bill a commencement period of up to two years—this is not going to happen overnight. That timeframe can be explored in Committee, as it is more important to get this right than to do it quickly.
In conclusion, for the reasons I have set out, I am very clear that the law needs to change to give terminally ill people choice at the end of life and to protect their loved ones from fear of prosecution. There will be some of us here today who are lucky enough not to have personal experience of this issue, but sadly we know that any one of us could end up in this heartbreaking situation. We are all living longer, which is brilliant, and I have campaigned inside and outside Parliament for a greater focus on prevention and early intervention of illness and disease to keep us fit and healthy for as long as possible, but any one of us or our loved ones could be unfortunate or unlucky enough to receive a terminal diagnosis. I struggle to see how it is fair or just to deny anyone the autonomy, dignity and personal choice of taking control of their final weeks. And the right to choose does not take away the right not to choose. Giving the choice of an assisted death to those who want it would of course not stop anyone who is terminally ill from choosing not to make that choice.
Whatever happens today, I am incredibly proud of the work that my fantastic team and the many campaigners have done on this hugely significant, emotional and sensitive subject. We need to be clear: a vote to take this Bill forward today is not a vote to implement the law tomorrow. It is a vote to continue the debate. It is a vote to subject the Bill to line-by-line scrutiny in Committee, on Report and on Third Reading. Then, of course, the Bill will go to the Lords for what I have no doubt will be further robust debate and scrutiny. This will be a thorough process, focused on one of the most significant issues of our time—an issue that people across the country clearly want us to address, none more so than the many families who are facing the brutal and cruel reality of the status quo. Today is the beginning, not the end, of that process, but the debate can continue only if colleagues join me in the Aye lobby today. I wholeheartedly encourage them to do so, and I commend the Bill to the House.
Danny Kruger (East Wiltshire) (Con)
I think you indicated that I could speak for a little longer than eight minutes, Mr Speaker.
Danny Kruger
Thank you very much. I do not want to have too much grumbling at the eight-minute moment. I will take my 15 minutes, with time for interventions.
I start by paying tribute to the hon. Member for Spen Valley (Kim Leadbeater) for her very powerful speech and the way in which she has led this campaign—with great respect, sensitivity and, to use a contested word, dignity. She and I knew each other before we were MPs, when we both worked in the charity sector. I like and admire her greatly, and I know that we have more in common than might appear today.
All of us in this House have this in common: we all share a deep concern about the experience of people dying or fearing death, pain and suffering. I bear heavily on my conscience the people whose lives will be prolonged beyond their wishes if I get my way and this Bill is defeated today. I will not disregard those people or minimise their anxiety. We will hear those voices in today’s debate—we have heard many of them already—speaking through hon. Members in what I know will be very moving speeches.
If I voted for this Bill, I would have on my conscience many more people whose voices we cannot hear—the people who would be vulnerable as a consequence of the huge changes that this Bill would introduce in our society and in the NHS. My view is that if we get our broken palliative care system right and our wonderful hospices properly funded, we can do so much more for all the people who we will hear about today, using modern pain relief and therapies to help everybody die with a minimum of suffering when the time comes. We will not be able to do that if we introduce this new option; instead, we will expose many more people to harm.
I will go through the Bill in a moment, but first I will say a word about process, in response to the points made by the hon. Member for Spen Valley. This Bill is simply too big for the time that it has been given, and I implore hon. Members not to hide behind the fiction that it can be amended substantially in Committee and in its later stages. The remaining stages of a private Member’s Bill are for minor tweaks, not the kind of wholesale restructuring that we would need if we were ever to make this Bill safe. Members who vote for the Bill today must be prepared to see it become law largely unamended. I suggest that if they have any doubts, the only responsible choice is to vote no, and let the advocates of assisted dying bring back a better Bill at another time.
Alistair Strathern (Hitchin) (Lab)
I deeply appreciate the respectful way in which the hon. Gentleman is making his point, but I stand before him not sure of how any colleague in this Chamber cannot have doubts whichever way they are voting today. It feels like there are two necessary harms that we are all forced to weigh up. If the hon. Gentleman is so certain that doubt should push people one way, I am deeply intrigued to hear why that is, when it is very clear that many people will continue to suffer unnecessarily if we reject this Bill.
Danny Kruger
I recognise that there are very many doubts on each side, and I fully respect the arguments that have been made by the hon. Member for Spen Valley. Of course this is a finely balanced debate, but the point about process is that this Bill is too flawed; there is too much to do to it to address in Committee. By all means, let us have this debate, but let us have that before a Bill of this magnitude is brought forward, The consideration of the Bill should be much more comprehensive.
Andrew George (St Ives) (LD)
Contrary to what the media are saying, today’s decision is not about bringing this Bill into law; it is about allowing it to go to the next stage. People may have misgivings, but the hon. Gentleman is making the assumption that the Bill cannot be corrected or amended in order to make it palatable to people who have doubts. We all have doubts, but surely today’s vote is simply to let it go to the next stage. The final decision on Third Reading is the critical one in deciding whether the Bill goes into law.
Danny Kruger
I think I have made the point that this Bill is too comprehensive and there is too much in it to address through the process of a private Member’s Bill. If the hon. Gentleman has serious concerns about aspects of the Bill that he would not be prepared to see come into law, he should not be supporting it today.
Let me explain the concerns about the Bill that I think are too comprehensive to be dealt with in Committee. I recognise how hard the hon. Member for Spen Valley has worked to try to ensure that it is safe, but I do not believe it is, for the following reasons. Let us start at the beginning. The process starts with a conversation between a patient and a medical practitioner—not necessarily a doctor; just a medic of some sort, unspecified at this stage. If the patient tells their ordinary family doctor that they want an assisted death, the doctor is obliged to either explain how it works or pass them on to someone who will do it—which is probably what will happen, by the way. The likelihood is that we would see a new branch of medicine spring up, like the medics I met in Canada.
Danny Kruger
I will in a moment.
These medics I met in Canada are specialists in assisted death and personally kill hundreds of patients a year in their special clinics. [Interruption.] If hon. Members have difficulty with the language, then I wonder what they are doing here. This is what we are talking about. I met doctors for whom this is their profession and their job, and they are proud to do it.
Kevin McKenna
I want to be very clear that “medical practitioner” is a synonym for doctor—not nurse, pharmacist, dentist or any other practitioner. To be a doctor is to be a practitioner of medicine. We need to be very clear on this. There is lots of law and regulation on this, and I believe that what the hon. Member said is incorrect.
Danny Kruger
What the Bill actually says is that a doctor means
“a registered medical practitioner…who has such training, qualifications and experience as the Secretary of State may specify by regulations”.
Obviously they are some sort of regulated medic—I recognise that—but they are not necessarily a doctor. We will find out. I recognise that they will have professional qualifications, but it is not clear what those are going to be because it is not in the Bill.
Gavin Robinson (Belfast East) (DUP)
I commend the hon. Gentleman for the way in which he is engaging in this discussion, in the same spirit as the hon. Member for Spen Valley (Kim Leadbeater). We often hear that one of the safeguards associated with the Bill is that medical practitioners would be involved and that a diagnosis of a terminal illness, with six months or less to live, would be required. Does the hon. Gentleman accept that medicine is not an exact science? It is the science of uncertainty blended with the art of probability. There is no exactitude in this. No court will second-guess medical opinion; it will simply look at process.
Danny Kruger
I entirely agree with the right hon. Gentleman; he is absolutely right. I am afraid that the definition of terminal illness is in a sense the essential flaw in the Bill, but I will come on to that.
Going back to the conversation that the patient has with the medical practitioner, the crucial point is that the conversation does not need to be started by the patient, according to the Bill. It could be started by the medic—any medic—perhaps in hospital, who could make the suggestion of an assisted death to a patient who has never raised the issue themselves, whose family have never suggested it and whose own doctor does not think it is the right thing to do. And so the idea is planted.
Then, for whatever reason—and, by the way, there is no need ever to give a reason—the patient says that they want to proceed with an assisted death. They sign a declaration, or rather somebody else can sign it for them. It could be any professional, someone they do not know—maybe a new medical practitioner. A total stranger can do all the paperwork on their behalf. That is what the clause about the proxy entails. Then these two medical practitioners make their assessment.
Paula Barker (Liverpool Wavertree) (Lab)
I urge the hon. Member to check the wording of the Bill, because if somebody signs as a proxy, they have to have known the individual for two years, and would simply be signing to say that they agree with the patient who wishes to go forward with assisted dying.
Danny Kruger
I do not have time to check the Bill now, but from my memory it refers to someone who has known the patient for two years or someone of good standing in the community, which could be some sort of professional who is not known to them at all. Someone can quickly check the Bill, but my understanding is that it could be a total stranger to them.
Jim Allister (North Antrim) (TUV)
Is the matter not very clear? Clause 15(5) states:
“In this section “proxy” means—
(a) a person who has known the person making the declaration personally for at least 2 years, or
(b) a person who is of good standing in the community.”
So there is no protection such as that which is pretended by the supporters of the Bill.
Danny Kruger
I am grateful for that intervention.
The assessments have to determine whether the patient is terminally ill, whether they have mental capacity to make the decision, and then whether they have been coerced or pressured into the decision. In many ways the whole issue turns on the question of whether someone is terminally ill. I am afraid that it is a term of great elasticity, almost to the point of meaninglessness. It is well known, as the right hon. Member for Belfast East (Gavin Robinson) said earlier, that it is impossible for doctors to predict with any accuracy that somebody will die within six months. It is a purely subjective judgment, made in this case by a doctor whose job will be approving assisted deaths. They simply have to determine not whether it is reasonably certain that death will occur, but that it can be reasonably expected—in other words, that it is possible.
Simon Hoare
The thrust of the Bill, as I understand it, is to ease suffering and pain in a patient who has a diagnosis and will die of the condition that has been diagnosed. But that right could only be exercised within a six-month period, and the pain and discomfort could last a lot longer than that. Has my hon. Friend heard—because I have not—what the importance of six months is? Why not eight, 10 or 12? What would stop people challenging it on the grounds that the dam has been breached, the six months is entirely arbitrary and it could, and indeed should, be extended by negative resolution in a statutory instrument?
Danny Kruger
My hon. Friend makes the right point, and I am afraid to say that is absolutely the case. The six-month cut-off is completely arbitrary and impossible to determine. It is a line in the sand, and of course it could be challenged, as so much of the Bill could be challenged, on human rights grounds. Every one of the safeguards that has been introduced by the hon. Member for Spen Valley would in fact be a barrier and a discrimination against the new human right that has been awarded to one group but should of course be awarded to all—if the point is conceded in this way.
Melanie Ward
Earlier this week, colleagues and I met two eminent doctors who were former presidents of the Association for Palliative Medicine, and they raised serious concerns about the Bill, including that the doctor or medical practitioner who makes the assessment need never have met the person they are assessing, or been involved in their care at all. What does the hon. Gentleman make of that?
Danny Kruger
The hon. Lady makes a very important point. I will not get into the question of public opinion and the polling, because it is so contested, but there is clear evidence that the doctors who work with the dying—the palliative care professionals—are opposed to a change in the law by a great majority. They see the damage that it would do to the palliative care profession and services, and they see the danger for vulnerable patients.
Wera Hobhouse
I appreciate that the hon. Gentleman talks to us as a medical professional and we need to listen to his views. But is it not true that any medical assessment is an approximation; something that cannot be said for certain? For this decision too, we cannot be 100% certain, but that is life. We cannot make legislation that is 100% good because at some point we have to make a decision, on balance, whether something has merit or not. For that reason, we should vote for the Bill.
Danny Kruger
I am grateful to the hon. Lady, especially for promoting me to the status of doctor; I am actually a charity worker and political hack by background. It is good of her to credit me with those skills—perhaps I should set myself up as a medical practitioner. She is right that medics and indeed judges have to make difficult judgments all the time. I think it would be very dangerous and inappropriate to give them the power to do so in this case.
The whole question of the six-month cut-off is very important. I acknowledge all the points that have been made, but there is another problem with the definition of terminal illness. Almost anybody with a serious illness or disability could fit the definition. I recognise that these are not the cases that the hon. Member for Spen Valley has in mind—of course they are not—but that is the problem with the Bill. All that someone needs to do to qualify for an assisted death—for the definition of terminal illness—is refuse treatment, such as insulin if the person is diabetic. In the case of eating disorders, a topic on which I have worked with the hon. Member for Bath (Wera Hobhouse), a person just needs to refuse food. The evidence from jurisdictions around the world, and our own jurisprudence, shows that that would be enough to qualify someone for an assisted death.
Lewis Atkinson
Does the hon. Gentleman accept that every day in the NHS patients refuse treatment, and indeed food, and that there is currently legal oversight in respect of coercion and other such matters? Would the Bill not strengthen protections in those areas?
Danny Kruger
I am perplexed by that argument. The suggestion that there may be coercion—of course there will be—and abuse, and all sorts of injustices that take place in the current system, does not strike me as an argument for regulating and licensing assisted suicide. If we have concerns about practice in the NHS, let us deal with that. Let us not license suicide—and, by the way, evidence from around the world shows that that increases suicide in the general population. Suicide is contagious. For instance, Oregon is often pointed to as an example. The incidence of suicide, outside assisted suicide laws, has risen by a third there since it was legalised. There would be enormous contagious effects were we to regulate and license it in this way.
Richard Tice (Boston and Skegness) (Reform)
The hon. Gentleman is making an excellent case for the Bill to be passed today. What he is actually saying is that there are specifics that require debate, analysis and discussion in great detail in Committee—that is the whole point of it. If it is not dealt with properly in Committee, it will not pass Third Reading. He is suggesting that because he does not like those specifics, we cannot discuss the Bill in any detail.
Danny Kruger
I am sure that the hon. Member for Spen Valley is delighted to have the support of the hon. Gentleman. I refer him to the point that I was making: this is an inappropriate process.
Sir John Hayes (South Holland and The Deepings) (Con)
My hon. Friend is making a superb speech, as I expected him to do. On the issue of process, I say this to the hon. Member for Boston and Skegness (Richard Tice), my constituency neighbour: as he will know, I have introduced some very serious Bills, including the one that became the Investigatory Powers Act 2016. It was preceded by three independent reports and pre-legislative cross-party scrutiny by both Houses, which happened before the Committee stage. The point is that that process should take place before Second Reading, not after.
Danny Kruger
I am grateful to my right hon. Friend. I will now run through the process before taking any more interventions.
As I have explained, pretty much anybody with a serious illness or disability could work out how to qualify for an assisted death under the Bill. Members may think that far-fetched, but it is what happens everywhere that assisted suicide is legal, including in Oregon.
Cat Eccles (Stourbridge) (Lab)
On a point of order, Mr Speaker. The hon. Gentleman is using incorrect language. It is not suicide. That is offensive. I ask him please to correct his language.
Danny Kruger
I am sorry if offence is given, but the fact is that the value of having a Bill in black and white is seeing what the law really is. What the Bill would do is amend the Suicide Act 1961. It would allow people to assist with a suicide for the first time. I respect the hon. Lady’s concern, but I am afraid we do need to use the proper language here.
The Bill’s scope is very broad. Members who think that assisted suicide for people with anorexia or other conditions that would not be regarded as terminal could not happen here should consider the young people in the UK today who are given a diagnosis of terminal anorexia and put on a palliative care pathway—essentially, assigned to death. Of course these are extreme cases—
Danny Kruger
I am not going to give way again.
There are a great many of these cases, I am afraid, and I mention them to show how wide open the Bill is. [Interruption.]
Mr Speaker
Order. May I ask the hon. Member for Bath (Wera Hobhouse) to keep a little calmer? She has intervened twice already, and plenty of other Members who also need to be heard.
Danny Kruger
I think particularly of disabled people, many of whom require constant treatment to stay alive. All, immediately and by definition, will be eligible under the terms of the Bill for a state-sponsored death. I refer Members to the Equality and Human Rights Commission, which has made the point that the line between disability and terminal illness is very blurred. That is why the Bill’s title is, in fact, so dangerous.
Danny Kruger
I will make a little progress.
The second question that medical practitioners have to answer is about mental capacity, and here again is a great vagueness. How do they judge if someone is in their right mind when they are asking for help to kill themselves? The Bill says that the definition of capacity is based on the Mental Capacity Act 2005, but that Act is deliberately expansive. It explicitly assumes capacity in the patient, so having acute depression is no bar to being judged to have capacity under the Act. Being suicidal is no bar under the Act, so the capacity test is no bar at all.
Finally, there is the question of coercion. Is the patient asking for an assisted death because of pressure from someone else? There are two glaring problems here. The first is that the process does not even attempt to answer the question properly. There is no investigation, no requirement for medics to interview friends and family, and no need for a psychiatrist or family doctor to be consulted. The medics just need to satisfy themselves—who knows how?—that, to the best of their knowledge, the person has not been pressured.
The second problem with the coercion test is that it focuses on only one type of coercion—the less likely type. The bigger danger is not other people pressuring someone to do this; it is that they pressure themselves—hon. Members have made this point. The Bill has nothing to say on that. Internal pressure is absolutely fine. If you feel worthless or a burden to others, if the NHS will not offer you the treatment you need, if the local authority will not make the adjustments you need to your home, if you have to wait too long for a hospital appointment, or if you want to die because you think the system has failed you, that is absolutely fine.
Several hon. Members rose—
Danny Kruger
I will get to the end of my speech.
That is the medical stage, and I will jump straight to the judicial stage. The medical practitioners sign it off, and then the judge has to confirm all the same tests. Of course, many eminent judges have made the point that it will overwhelm the family courts if the test were applied properly, but it will not be applied properly, because the Bill assumes that judges will fulfil a new inquisitorial role and actually look into cases as investigators, which is entirely unknown in English common law. But the Bill will not require any actual investigation.
There is no requirement for a judge even to meet the applicant. They simply have to have a phone call, or maybe it will be an email, from one of the medics. That is it. That is the inquiry. On that basis, the judge must decide whether it is more likely than not that there has been external pressure. After the judge approves it—they are required to approve it, unless they can find evidence of external coercion—we go to “the final act”, as the Bill says, where a junior colleague, as a medical practitioner, oversees your death by pills or lethal injection.
And here is the last thing that the Bill does or does not do. There is no requirement at any stage of the process—at either the medical or the judicial stage—for anyone to tell the patient’s next of kin, their wider family or even their GP that the NHS and the judicial system are working in secret to bring about the death of their loved one, maybe their father or their daughter. I say again that these are not the cases that the Bill was designed for, but they are directly in scope, and it is going to take more than a tweak in Committee to get them out.
Is this what is meant by having choice at the end of life? Let us talk about choice. I am often accused of wanting to impose my view on others—that point was made earlier. People say, “If you don’t approve of assisted death, don’t have one, but don’t deprive me of the choice.” In fact, the evidence is that, with this new option and the comparative loss of investment and innovation in palliative care, real choice will narrow. There is a broader point to make about choice, which is that no man or woman is an island. Just as every person’s death, even a good death, diminishes us all, so we will all be involved and affected if we make this change.
The Bill will not just create a new option for a few and leave everyone else unaffected; it will impose this new reality on every person towards the end of their life, on everyone who could be thought to be near death, and on their families—the option of assisted suicide, the obligation to have a conversation around the bedside or whispered in the corridor, “Is it time?” It will change life and death for everyone.
I am very aware of the terrible plight of the people who are begging us for this new law. I think we can do better for them than they fear, but we also need to think in real human terms about what the effect will be on the choices of other people, and I do not mean the people who are used to getting their way. I am talking about the people who lack agency, the people who know what it is to be excluded from power and to have decisions made for them by bigwigs in distant offices who speak a language they do not understand—the sort of people who the hon. Member for Spen Valley and I both know from our previous charity work, and who we all know from our constituency work. They are not the people who write to us campaigning for a change in the law, but the people who come to our surgeries with their lives in tatters, or who the police or social workers tell us about—the people with complex needs. What are the safeguards for them?
Let me tell the House: we are the safeguard—this place; this Parliament; you and me. We are the people who protect the most vulnerable in society from harm, yet we stand on the brink of abandoning that role. The Rubicon was a very small stream, but on the other side lies a very different world—a worse world, with a very different idea of human value. The idea that our individual worth lies in our utility, valuable only for so long as we are useful—not a burden, not a cost, not making a mess. Let us not be the Parliament that authorises that idea.
I mentioned at the start of my speech the voices of those we cannot hear: the frail and elderly and the disabled. As we are surrounded by such a cloud of witnesses, let us do better than this Bill. Let today be not a vote for despair, but the start of a proper debate about dying well, in which we have a better idea than a state suicide service. Let us have a debate in which we remember that we have intrinsic value; that real choice and autonomy means having access to the best care possible and the fullest control over what happens to us while we live; and that true dignity consists in being cared for to the end.
Several hon. Members rose—
Mr Speaker
Order. I remind the House that we want to aim for speeches of up to eight minutes. I call the Mother of the House.
Ms Diane Abbott (Hackney North and Stoke Newington) (Lab)
I congratulate my hon. Friend the Member for Spen Valley (Kim Leadbeater) on bringing forward this Bill, which has been the occasion of a very important national conversation. I recall to the House the fact that, in 1969, Parliament voted to abolish the death penalty for murder. Public opinion was actually against that change, but MPs believed, on a point of principle, that the state should not be involved in taking a life. It was a good principle in 1969 and it remains a good principle today.
I am not against legalising assisted dying in any circumstance, but I have many reservations about this Bill. In particular, I do not believe that the safeguards are sufficient. They are supposed to be the strongest in the world because of the involvement of a High Court judge, but the divisional courts have said that
“the intervention of a court would simply interpose an expensive and time-consuming forensic procedure”.
Sir James Munby, the former president of the family division of the High Court, said recently:
“Only those who believe implicitly in judicial omniscience and infallibility—and I do not—can possibly have any confidence in the efficacy of what is proposed.”
Is the judge supposed to second-guess doctors? Will the judge make a decision on the basis of paperwork? Or will there be a hearing in open court? Where will be the capacity in the criminal justice system to deal with all this? Far from being a genuine safeguard, the involvement of a judge could just be a rubber stamp.
Catherine Atkinson (Derby North) (Lab)
More than two thirds of care proceedings involving the most vulnerable children in our society cannot be completed within six months. Does my right hon. Friend agree that there is a real concern that the safeguard is not deliverable, or risks being the rubber stamp that I know my hon. Friend the Member for Spen Valley (Kim Leadbeater) does not want it to be?
Ms Abbott
I entirely agree with my hon. Friend.
Robust safeguards for the sick and dying are vital to protect them from predatory relatives, to protect them from the state and, above all, to protect them from themselves. There will be those who say to themselves that they do not want to be a burden; I can imagine myself saying that in particular circumstances. Others will worry about assets they had hoped to leave for their grandchildren being eroded by the cost of care. There will even be a handful who will think they should not be taking up a hospital bed.
Jake Richards (Rother Valley) (Lab)
My right hon. Friend makes her case powerfully. Can I ask her to comment on the current situation whereby people ask themselves the question she just asked today? What safeguards are there for those people? What inquiry is made before those people pass away, often having taken the most drastic and horrific action to do so?
Ms Abbott
But if the House passes this legislation, the issue that I have raised will become foremost in people’s minds even more so.
We are told that there is no evidence of coercion in jurisdictions where assisted suicide is possible, but people do not generally write letters to sick relatives urging them to consider assisted suicide and then put those letters on file. Coercion in the family context can be about not what you say but what you do not say—the long, meaningful pause.
Shockat Adam (Leicester South) (Ind)
As a medical professional who is surrounded by even more senior medical professionals, I know we can all miss things when there are tangibles in front of us: the shadows on X-rays and the markers on blood tests. As professionals, we miss things that can be seen. What security will we have that we can pick up things that we cannot see, like coercion?
Ms Abbott
That is the point: coercion is something that there will be no material evidence of and that we cannot see.
People keep saying that the Bill cannot be amended, but of course any future Government could bring in new clauses. We can see what has happened in Canada, which introduced assisted dying in 2016 for adults with terminal illnesses. In 2021, it was extended to people with no terminal illness and the disabled. In March 2027, anyone with a serious mental health problem will also be eligible. The House should remember that no single organisation representing the disabled supports the Bill.
Mary Kelly Foy
My daughter Maria lived her life with severe disabilities and health conditions. Since her birth, we were told many times that she might have only six months to live. She lived for 27 years. Crucially, Maria was non-verbal. I am filled with dread and fear about what might happen to people like Maria who are non-verbal and do not have that capacity, if they are not loved and cared for and do not have somebody speaking out for them.
Graham Stuart (Beverley and Holderness) (Con)
The case of Maria, and others, should give us all pause. Does the right hon. Lady agree, with two thirds of the Cabinet apparently supporting this measure in principle, that we should reject the Bill today, but that we should as a House commit not to go another 10 years ignoring this topic, but to come forward in a considered way, ensure it is looked at properly, and do everything possible to have a system that is more robust, more caring and ensures good outcomes for people like Maria?
Mr Speaker
Order. Let me also say that we must try to keep to the time limits.
Ms Abbott
I agree with the right hon. Gentleman. As I said right at the beginning, I am not against assisting dying in any circumstances. If the Bill passes, we will have the NHS as a 100% funded suicide service, but palliative care will be funded only at 30% at best. The former Member for Dunfermline East, Gordon Brown, has said recently:
“we need to show we can do better at assisted living before deciding whether to legislate on ways to die.”
I represent very many vulnerable people in marginalised communities. I cannot vote for a Bill when I have doubts about whether they will be protected. We can come back, have a commission and craft a better Bill, but I will not be voting for the Bill today.
Mr Andrew Mitchell (Sutton Coldfield) (Con)
I want to make three brief points. First, I have completely changed by mind on this subject since I entered the House during the last century, because I have sat in my advice surgery with tears pouring down my face listening to constituents who have set out so clearly, speaking with such emotion, about how their mother, brother, father or child had died in great pain and great indignity.
I strongly support the Bill, and I congratulate the hon. Member for Spen Valley (Kim Leadbeater) on the excellent way in which she has presented it. I believe that we should give our constituents—our fellow citizens—this choice. I want this choice for my constituents; I want it for those whom I love; and I want it, perhaps one day, for myself.
Dr Scott Arthur (Edinburgh South West) (Lab)
Will the right hon. Gentleman give way?
Mr Mitchell
I will not, I am afraid. The current law forces people to plan their deaths in secret. Their bodies are found by their loved ones. Often, they die in the most horrific circumstances. They have no chance to say goodbye to their loved ones. It is devastating for their families. The former Health Secretary commissioned the Office for National Statistics to try to find out how many people who committed suicide every year were dying people. The figure was between 300 and 650.
Secondly, in our democracy, the Commons must make this decision. Only we, elected by our constituents, have the legitimacy to do this. It is not the DPP, the Crown Prosecution Service, the police, doctors or even unelected Members of the House of Lords—this House of Commons must make this decision. Let us be clear that all of us on both sides of the debate strongly support an increase in the quality and extent of palliative care. For me, the debate is about extending choice, in very narrow and heavily regulated circumstances under the Bill, as the hon. Lady so clearly set out—the choice not to be forced to end your life in pain and indignity. No element in the Bill talks about intolerable suffering. Many believe that the Bill is too narrowly drawn. I stand by the hon. Lady’s drafting. We should remember that in Oregon there has been no serious attempt to change or amend the law.
I had the privilege of speaking to an NHS consultant last year, the day before she headed to Dignitas. She said, “I love my country, but I object very strongly to my country forcing me to make this choice, and to having to travel unaccompanied to a foreign country to die.” The status quo is cruel and dangerous. People caught up in these circumstances have no transparency; there is no regulation, safeguards or oversight. The Bill contains a whole series of safeguards that are not present at the moment.
Thirdly, we are deciding today on a principle. If the Bill is voted down on Second Reading, that will be the end of the matter for many years, and we will do that in the knowledge that Scotland, the Isle of Man, Jersey and many other countries are likely to bring in legislation like this. There are 300 million people in 30 jurisdictions who have secured this ability to choose. There will be numerous safeguards. There will not be a slippery slope unless this Parliament agrees to there being one. If we agree to a Second Reading today it is, in my judgment, inconceivable that the Government Front Bench will not ensure we have the proper time to scrutinise the Bill.
This Bill goes with the grain of our constituents’ views—about 75%, according to the most recent polling. There is an opportunity and a chance, as the hon. Member for Spen Valley has set out, to consider in detail these matters ahead of Third Reading. As drafted, the Bill seems to me a very modest and controlled proposal. Let us not forget this: Oregon shows us that fewer people take these steps once they know they have this choice as a back-up.
I end with something I have never forgotten. Some years ago, I was listening in a debate to a young man who had recently lost his father. He had visited his father and seen him in great pain and indignity. He had seen him three days before he died. In the end his father put a bag over his head and used his dressing-gown cord to hang himself. That young man said to all of us: “If you are ever in this position, let’s hope that God will help you, because they certainly won’t.” Today, this House has the opportunity to ensure that they will.
Andy Slaughter (Hammersmith and Chiswick) (Lab)
It is a pleasure to follow the excellent speech of the right hon. Member for Sutton Coldfield (Mr Mitchell). In preparation for today I have had a number of discussions with my hon. Friend the Member for Spen Valley (Kim Leadbeater), and I want to put on record that the measured way she has dealt with the proceedings has been excellent. I do not know whether she has ever had moments of doubting whether this was the right thing to pick as a private Member’s Bill, but she has been an absolute credit to this House in the way she has dealt with these matters so far.
In 2015, in the last Chamber debate on this subject, I wound up for the Opposition Front Bench, but my interest in it goes back much further. Like all Members of this House, I have had hundreds of emails from constituents on both sides of the argument. Many ask me to oppose the Bill; those emails come from people of faith, and I wholly and entirely respect what they say, but they are the first people also to say that this is an individual decision for every individual Member of the House to make.
As I have been at the bottom of the list of speakers to be called for so many years, I have great sympathy for those who find themselves there today, so I will try to keep my remarks to one narrow point: the legal context of the Bill. There is a false dichotomy that the law as it stands is fit for purpose, that we go into the unknown with the Bill before us and that we should somehow keep the safety of the status quo. I think that could not be more wrong. There are no safeguards in the current law. The only sanction against coercion is ex post facto; we are leaving it to individual directors of public prosecutions to make decisions in individual cases after the event.
DPPs take that job extremely seriously, as anyone knows who has heard Sir Max Hill, the last DPP to speak on the subject. They have, at the instigation of the courts, set out guidelines—I think we know that it was an excellent Director of Public Prosecutions who set out the guidelines on this case. They have done everything they can, but it is not their responsibility; it is our responsibility, and the courts, up to and including the Supreme Court, have made that clear.
We assign in this Bill a role to the High Court as part of the process, but we are the final decision takers. That has been made clear not only by domestic, but by international courts; the European Court of Human Rights has said in every case in which such matters have come before it that the margin of appreciation should be put into effect and therefore it should not interfere with the law as we decide it. We cannot dodge our responsibilities and I know that we do not want to do that. We have a duty to put in place the best law we can, and that is not the law as it stands.
There are three choices for people who want to end their own lives. They can go to Dignitas alone, if they can afford to do that. They can attempt, and perhaps succeed in, suicide. They risk failing. If they succeed, they will have a lonely death. They may, as others have pointed out, simply have to resort to refusing treatment or food. The third option is that they can embroil their relatives or friends, at the risk of their being investigated or prosecuted. They also risk ending their lives too soon.
On safeguards, I do not follow the view of opponents of the Bill. At some times they seem to say that they are too complex, too expensive and that there are not enough resources. If we want to resource the Bill, we can. I do not think that those are the strongest arguments.
Andy Slaughter
I really do not want to, because of the time. I am sorry. [Interruption.] Should I? I will give way once.
Jonathan Davies
My hon. Friend talks a little about safeguards. I invite him and the House to reflect on the covid pandemic, when a lot of safeguards around a lot of things were relaxed. I worry that if we were to see another pandemic on the scale that we saw in 2020, people might feel that they were doing something patriotic by getting out of the way and freeing up a bed for a younger person. I invite him to reflect on that.
Andy Slaughter
In practice, a terminally ill person will need to formally consider their decision at least eight times under the provisions in the Bill. This is a starting point—a number of Members have made that point. I believe the Bill has already had more scrutiny than most public Bills we consider, but we have up to nine months before us to consider it further.
All the practical and legal considerations point towards the Bill. It may well be amended to change the safeguards or the way it operates, but we have the opportunity to do that. In the end, for me, that is not the decision. The decision is about two things: it is about human dignity and it is about agency. I would like to think that even at the end of life—no, especially at the end of life—when someone has their faculties but may be at their weakest ebb, they can still exercise that agency and still make decisions for themselves. They can have the longest life they can and they can end that life in the way that is most beneficial to them, their loved ones and their family. That is simply not happening, and by voting against the Bill today Members ignore those facts.
Kit Malthouse (North West Hampshire) (Con)
When I was a child, my parents shielded me from death. Centuries of art, literature and religion taught me that death was something noble or even slightly romantic. When I became an adult, I learnt pretty quickly that that was not the case. For far too many, it is anything but and certainly not noble. The deathbed for far too many is a place of misery, torture and degradation, a reign of blood and vomit and tears. I see no compassion and beauty in that, only profound human suffering. In 10 years of campaigning on this issue, I have spent many, many hours with dying and bereaved people, which has, time and again, reinforced my view.
I am a co-sponsor of the Bill and I am the co-chair of the all-party parliamentary group for choice at the end of life. I could give a speech to promote the Bill, but my hon. Friend—and I do call her a friend—the Member for Spen Valley (Kim Leadbeater) has done that remarkably well. In my speech I want to address some of the common issues that have been raised, and that will no doubt be raised during the debate, with which I struggle.
First, we will no doubt hear an awful lot about the overseas experience. I am married to a Canadian, and I can tell the House that they love their children just as much as we do. The idea that the Canadians, Australians, New Zealanders, Spanish and Austrians care little for their relatives, or indeed for the wider society in which they live, is frankly offensive. We should not pretend that somehow we are special or different. They have thought as profoundly on these issues as we have over the past 10 years. We can learn from them, and design a system for our own sensibilities and culture, as they have done. They all have different laws on abortion, some of which we would not pass in this House, but that does not mean we should not have abortion laws here. We are a 1,000-year-old democracy, and we should be able to design legislation that deals with this issue for ourselves.
The second issue that has been raised with which I have struggled regards the impact on the NHS and on judges. People are already dying; they are already in the national health service and entitled to care. Even if we think there will be an impact, are people seriously telling me that my death, my agony, is too much for the NHS to have time for, or too much hassle? It is even claimed that such matters would overload the judges—that I should drown in my own faecal vomit because it is too much hassle for the judges to deal with. We send things from this House to the NHS and to judges all the time. Is anyone suggesting that we should not create the new offence of spiking, which has come through this week, because judges are overworked? Of course not. They will cope as they have done with all sorts of things that we have sent from this House over the years, and we should not countenance the idea that some logistical problem will get in the way of our giving a good death to our fellow citizens.
I also want to address directly those Members who are considering voting against the Bill, to ensure that they are clear in their minds that a vote against the Bill is not a passive act. There are two states of being on offer today. I have to break some news to Members: whatever happens to the Bill today, people with a terminal illness will still take their lives. If the Bill falls today, we will be consigning those people to taking their lives in brutal, violent ways, as they are at the moment, and will see increasing numbers of our fellow citizens making the trip to Switzerland if they can afford it. We know that between 600 and 700 people a year are killing themselves in violent ways—shooting themselves, throwing themselves in front of trains, taking overdoses in lonely, horrible circumstances. As I said, many are going to Switzerland, but more than that are lying in hospital—I guarantee that there will be somebody over the river in St Thomas’ hospital now who is refusing treatment and starving themselves to death because they cannot face what is in front of them.
Sam Rushworth (Bishop Auckland) (Lab)
Does the right hon. Gentleman agree that we had a choice today? We have come here to debate assisted dying, but we could have come here to build cross-party consensus on how finally, once and for all, to fix palliative care in this country. We could have come to look at a funding consensus, as that does need to be cross-party. I agree with his point that voting no is also a choice, but what follows from that should be a cross-party consensus on how we fix palliative care.
Kit Malthouse
I agree with the hon. Gentleman, and what a surprise it is that the conversation about palliative care has started. We were not having that conversation before this Bill came forward. The evidence from the Health and Care Committee, published only in February this year, shows that palliative care and assisted dying go hand in hand.
Kit Malthouse
I will not give way.
Improvements also go hand in hand; medics from across the world told us that the two things are complementary. In Australia I discussed this issue with a palliative care doctor who was against the introduction of assisted dying when they were contemplating it. She now finds it an invaluable tool, and she embraces it as something that her patients want and need. My concern is that if the Bill is turned down, as it was in 2015, the conversation about palliative care will wither, as it has done for the past 10 years.
I want to share a story that has particularly affected me. Mark Crampton was a former police chief inspector who was suffering from chronic obstructive pulmonary disease. His COPD became too much for him, so he informed his family that he was going to take his own life. He took his oxygen tank and mask and late one night went out and sat on a railway embankment. He wanted a death that was instant and quick, and that he could rely on. He waited until 2 in the morning—heartbreakingly, he had worked out when the last train was going, so he would minimise disruption to the public—and then took his life in lonely circumstances in the middle of the night. By not passing the Bill, we would deny to Mark supervision, conversation, access to doctors, periods of reflection, advice. Even if he had been through all that and decided it was still too much, the Bill would give him a much better end than he actually achieved. Members should be clear, as I say, that whatever happens to the Bill, terminal people will still take their lives.
I have to say to the hon. Member for Brent West (Barry Gardiner), who says that hundreds of people dying in agony every year is a price worth paying for the good of society, that I find that an appalling prospect. A society that looks away from these people —like those in the Public Gallery who are living in terrible fear of what will face them, or who have watched their families die in fear—and says that that is okay for the good of the whole is a terrible, terrible prospect. We have a duty to assist them, as other countries around the world have done, and to find a way to make them comfortable in the end.
Kit Malthouse
I will not.
Finally, I want to talk briefly about rights. We hear a lot about rights in this debate—quite rightly. We hear about the rights and fears of the disabled community, who are specifically excluded from the Bill; we hear a lot about the rights and fears of the elderly, who are also specifically excluded from the Bill; we are even hearing about the rights of doctors, who are allowed to conscientiously object to participating in this process, if they wish. When are we going to have the conversation about the rights of the dying? Where do we put them in the ranking of rights, as they face their end? When do we grant them the autonomy and choice for which so many of them have campaigned over the years? Surely, as they come towards the end of their life, their rights have to be at the forefront of our mind. The last, best gift we can give them is control over the disease that is destroying them.
If we do not pass the Bill today, we are cornering all those people; we are trapping them, with the law, in their disease, and consigning them to an end of torture and degradation that they do not wish to go through. As I said before, we are a 1,000-year old democracy. It is not beyond us to design legislation that will give those people what they want, while protecting those whom we feel need to be protected. Like my right hon. Friend the Member for Sutton Coldfield (Mr Mitchell), I want this choice for my constituents, but profoundly I want it for myself and for the people in the Public Gallery who have worked so hard over the past decade to get us to change our minds.
I ask Members please to be clear that whatever happens today, terminal people will still take their own lives—all we are deciding today is how.
Several hon. Members rose—
Madam Deputy Speaker (Caroline Nokes)
With the reminder that there is no formal time limit, and if we wish to get in as many Members as possible, could Members please constrain themselves to about eight minutes?
Rachael Maskell (York Central) (Lab/Co-op)
This is hard, Madam Deputy Speaker. With compassion, we search for ways to best alleviate pain and suffering and ensure that those we love die in peace. Initiated by the Bill, focus has rapidly turned to caring for the dying and optimising every moment of the life that we want to hold on to; it breaks us knowing that at some point we have to let go. That was the mission of Dame Cicely Saunders, founder of the hospice movement.
Thankfully, most die in peace, but tragically not all. Funding for palliative care has regressed against rising demand in an ageing society with growing comorbidities. Hospices are paring back services. Research by the Anscombe Bioethics Centre in Oxford highlights how jurisdictions with assisted dying fall down the rankings on palliative care, while promised funding never materialises. When more than 100,000 people, predominantly in poverty, from minoritised communities or based on postcode, fail to access any palliative care despite needing it, or when those who access care do so from frequently overstretched services, unable to make timely or optimised interventions, or when, for most, care starts far too late, tragic testimonies follow, as we have heard in recent days.
We all know that the NHS is under significant duress, and just cannot do what it should. Social care is fragmented and costly, and palliative care is significantly underfunded and inequitable. This is a mess. Following Lord Darzi’s devastating report, we must give my right hon. Friend the Health Secretary the opportunity to reset health and care. I believe that that is what we on these Benches were elected to do.
With just 17 days since publication, this Bill has consumed us and that will only intensify if it proceeds. Instead, our focus should be on getting palliation right and then seeing what is really needed. We cannot do both as there is simply not the capacity. More than 70% of the public say that they want a commission on palliative and end-of-life care before we consider assisted dying. Other polls agree. Plans for a commission are well advanced.
Sir Roger Gale (Herne Bay and Sandwich) (Con)
I agree with the hon. Lady entirely: the way forward should be through better palliative care and not through assisted suicide. The Bill does not address the needs of children. Would she recognise that we also need better palliative care for children as well as adults?
Rachael Maskell
I completely agree with the right hon. Gentleman, who makes a pertinent point. After all, we would never write a prescription before making a diagnosis, yet this Bill does that. It is simply prescribing the wrong medicine. Extraordinarily, there is no critical analysis, not even an impact assessment, when such significant matters of life and death are at stake and when our broken health and justice system would be stretched even further.
My constituent was just 46 when she received a terminal diagnosis. She did not have long; the cancer was advancing and the prognosis would have qualified her for an assisted death. Had it been law, she would have consented. Now 54 and in remission, she pleads that the Bill should not pass. Palliative care consultants say that it is nearly impossible to prognosticate at six months; just 46% get it right. Experts say that the arbitrary six-month threshold is insecure. We must recognise its prematurity. Clause 2(2) says that someone for whom treatment only relieves symptoms but does not cure them would qualify for an assisted death if they were within the criteria. We understand someone declining chemotherapy, but the provision extends to any condition where a cocktail of drugs is sustaining life. The person involved may be only 18. That would not need a change in the law; it is written in the Bill.
My greatest concern is coercion. We live in a coercive society; the UK spends £40 billion on advertising and ever more powerful algorithms drive us to content online. We recognise coercion in relationships or elder abuse, but the Bill fails to safeguard against it when someone is dying and there is malign intent. People often recognise coercion only after years have passed, yet within a month someone could be dead. Malign coercion cases may be few, but as a clinician working at the fringes of life, I heard my patients frequently say, “I don’t want to be a burden,” or “I’d rather the money went to the grandchildren than on my care,” or “Somebody is more deserving than me.”
Intrinsic coercion is very real, not least where the law has changed—rapidly becoming an expectation, verbalised as a duty to die. In fact, not wanting to be a burden is cited as a major reason to opt for an assisted death, alongside loss of dignity, loneliness, and needing personal care, yet every day, disabled people live in this reality. We fight in this House to take away stigma and give dignity, equality and worth. That is why disabled people fear the Bill: it devalues them in a society where they fight to live.
We should understand why Disability Rights UK opposes and why Liberty opposes: to push back against the Bill is the cause of the progressive and the libertarian, not just the domain of the conservative. Under this Bill, a doctor may raise an assisted death with their patient—clause 4(2). Given the trust we place in doctors, not least when people are vulnerable, this is so significantly coercive. Let us suppose there is unconscious bias, which is well known in healthcare. Before people question that assertion, let me cite the industrial application of the Liverpool care pathway, and then, five and a half years after its ban, the covid “Do not actively resuscitate” letters. The evidence shows that disabled and ethnic minority people experience bias in healthcare. Those who stand for equality will recognise the safeguarding failures in the Bill. While not wanting to encourage suicidal ideation, rates are 6% higher in jurisdictions where there is assisted suicide.
On the process, two doctors—possibly unknown to the patient—ask a set of questions. It can take days to establish capacity in the courts, but it only needs a consultation. That is the same for assessing coercion and prognosis. Doctors are proponents of assisted dying. Risk increases in closed environments. At least the Isle of Man is considering a parole board-style approach; this Bill does not. The documentation of the decision fails in its rigour, not even seeking evidence for the decision. It is passed to a judge.
Sir James Munby, former family division president, describes,
“a scheme which does not provide for an open and transparent process but, on the contrary, permits a secret process which can give us no confidence that it will enable the court to identify and prevent possible abuses.”
In decrying how the Bill changes the role of the judge to one of certifying compliance, he states,
“the Leadbeater Bill falls lamentably short of providing adequate safeguards,”
describing the suspension of any appeal as an “extraordinary” omission, not least if the patient’s concerned relative or physician cannot take their case. That is backed by Thomas Teague KC, former chief coroner, who said the safeguards “will not hold” and that they
“amount to nothing more than arbitrary restrictions, with no rational foundation.”
Lord Sumption, former Supreme Court judge, highlights that once the law facilitates assisted suicide, it could be deemed discriminatory to deny others—disabled people—the same right. Barristers say they will take cases. They expect the law to change.
Rachael Maskell
I will press on.
Much would rely on regulations using the negative procedure, and some the affirmative. Even if not prepared within two years, clause 42(3) says the Act would be fully implemented. The Bill changes the role of the chief medical officer without any analysis, as is the case for doctors. During the 14-month Health and Social Care Committee inquiry, we heard how the clinician-patient relationship changed with assisted suicide. Record keeping and data collation is inadequate, as we found in Oregon.
Clause 18(9) highlights that the procedure may fail. The Bill is silent on how to manage such cases, but it should be explicit. We must acknowledge that it is not always peaceful. We learned in Oregon that some have seizures or vomit as the body rejects the toxic medication.
The Bill falls woefully short on safeguarding patients, too. It is too flawed to amend. It is a wrong and rushed answer to a complex problem. Today, we must be beyond reasonable doubt of error if voting for the Bill. Remember, the vote is not on the principle of assisted dying or on choice, but the principles detailed within the clauses of the Bill. Polling overwhelmingly says that if Members are in any doubt, the public expect them to vote against the Bill today. We can focus on optimising palliative and end of life medicine to build consensus and to discern what further steps need taking. For death, as with life, is too precious to get this wrong.
Madam Deputy Speaker (Caroline Nokes)
I call the Chair of the Health and Social Care Committee.
Layla Moran (Oxford West and Abingdon) (LD)
I congratulate the hon. Member for Spen Valley (Kim Leadbeater) on bringing the Bill. I commend her for the tone she has set in shepherding the debate and, indeed, I commend Members across the House with sincerely held views for the way we have done this so far—I hope it will continue.
Most things we do in this place have some bearing on life and death, but it is rare we discuss those concepts in their most visceral and direct forms. As a nation, we do not talk about death nearly enough, especially while we are well, but it happens to us all, so I welcome the chance to enable better conversations not just in this place together, but in people’s own minds for themselves. No matter how anyone votes today, I hope that we can all agree that this debate is a profound and proud moment for our democracy.
To that end, I want to be up front: I will be voting for the Bill today, because I want this conversation to continue. To those arguing the moral grounds and making the point that we are crossing the Rubicon, I sincerely respect their views. These are moral judgments. There will be Members who are making the moral case, and I want to hear them. But I urge those MPs who might be minded to vote for the Bill on principle, but are worried about the details—how we might change a word, the role of clinicians or MPs, or whatever it may be—to reconsider the question they are asking themselves today.
This is Second Reading. The media are asking all of us, “Are you for or against the Bill?”, but I urge hon. Members to think about the question differently. The question I will be answering today is, “Do I want to keep talking about the issues in the Bill?” I am asking myself if I want to keep grappling with the detail until I get to Third Reading, when I might reserve the right to vote no. They can decide the answer to that question for themselves.
Mr Cleverly
I appreciate the hon. Lady giving way, but she is misrepresenting what we are doing at this point. We are speaking about the specifics of this Bill: this is not a general debate or a theoretical discussion, but about the specifics of the Bill. My hon. Friend the Member for East Wiltshire (Danny Kruger) has highlighted numerous deficiencies, and I will provide one example. If the proposed legislation is such a good thing to alleviate pain and suffering—a right that we should be proud to pass—why are we denying it to children? If it is a positive, why are we denying it to children? We are discussing the specifics.
Layla Moran
The right hon. Gentleman might want to raise that issue in Committee, at a later stage. However, it is important for hon. Members to appreciate that they can vote yes today, and vote no later.
I want to come on to palliative care, which is really important. The message from the sector, patients and their families is crystal clear: palliative care is not good enough and we must do better.
Mr Lee Dillon (Newbury) (LD)
Does my hon. Friend agree that we are not talking about a choice between palliative care and assisted dying? The two can go hand in hand, but with the knowledge that if palliative care does not provide the individual with the comfort they require, the Bill would give them the option to decide how they want to end their life, rather than drifting away without being able to have a final cuddle or say a final goodbye.
Layla Moran
There needs to be a debate around palliative care. My concern is that we have not had any firm commitments from Government, other than woolly words, about how they are actually going to tackle the issue, and that a royal commission will push it into the long grass.
I say to the Secretary of State for Health and Social Care, who is in his place, that the gauntlet has been thrown down. If he wants someone like me to not vote for the Bill moving forward, he needs to do two things: he needs to put firm commitments on palliative care on the table and resolve them within the next one or two years, and then, afterwards, commit to bringing back a Bill like this one in Government time. Without those firm commitments, I will continue to make the case for wanting to see progress.
Imran Hussain (Bradford East) (Ind)
The hon. Lady and I come to this subject from different places, as I will be voting against the Bill. I agree with her and all the hon. Members who have spoken about the need to massively improve palliative care, but she says we can address some of those concerns at a later stage. How does one address coercion and guilt through legislation?
Layla Moran
These are conversations that I want to keep happening, but I say to those who are making the argument about the process and asking how we can make that better, what does a Bill that addresses assisted dying that they might vote for look like? If the answer is that there is none, let us be honest about that.
I want to end by giving a tiny amount of my time to someone who is in the Gallery today. Tracey, I cannot see you right now, but thank you for coming. I said to Tracey, my constituent, when we met that I would allow some of her words to be spoken today. Tracey was 58 when she was diagnosed with incurable stage 4 breast cancer, which spread to become a brain tumour in 2023. It was successfully removed, but Tracey lives every day knowing that her cancer is likely to return. These are the words Tracey wants us to hear:
“Despite this prognosis I can honestly say that I am a happy person now. I feel lucky to have made it to 60. There is just one black cloud on the horizon for me, and it is the way that I will die. I am terrified that I will suffer a long, painful death. If I knew I had the choice to have a good death, these worries would disappear. Please change the law so I can live what life I have left, safe in the knowledge that I have a choice about how and when I die. If you do this, I will be able to live even more happily today knowing that I do not need to worry about the prospect of a cruel and painful death.”
I will end by saying that there are sincerely held views being heard today. Let this be this Parliament that ensures, regardless of how we vote today, that we give people a good death.
Tonia Antoniazzi (Gower) (Lab)
I have led two Westminster Hall debates for the Petitions Committee on the subject of assisted dying. I have grappled with this subject, and I still do. When my hon. Friend the Member for Spen Valley (Kim Leadbeater) was speaking earlier, I had a packet of tissues, and I made swift work of them. It really is so difficult for so many us, with our personal experience and our own thoughts.
It is genuinely our privilege to be able to say that this is what we want or what we do not want. We may not be facing this right now in our lives, but when you are, you think about it deeply. I will be voting for the Bill today. I think about this all the time—I need to maybe get a bit of a life—because it really is something that bothers me. It is an honour for all of us in the Chamber to be able to debate this today, whatever our views. I have to say, this is just not easy. I want everybody out there to know that it is not easy. It is really difficult, and it is difficult for those on both sides of the debate.
I will get to the Bill now, because as has been pointed out, we are here to talk about the Bill, not to get overly emotional. I want to talk about how it impacts Wales. I hope we will be able amend the Bill to take consideration of these things, and I hope that we can look at this in detail in the Lords. I believe that the Bill should pass today, because we need to discuss it and know how it is going to work. As it is currently drafted, we will need to look to the Welsh Government to see if there needs to be a legislative consent motion, because it does not seem to engage with the Sewel convention in a substantive way.
Issues that have been raised with me include that the Bill places multiple duties on the Secretary of State in England around codes of practice and ensuring assistance within the NHS. The Welsh Government need to be happy with the Secretary of State in England deciding how services are to be provided within the Welsh NHS. There will need to be an amendment, which I suspect will then engage with the Sewel convention.
The need for subordinate legislation to enact the Bill is really complicated, and we need to see how it will be passed in this place. There are issues around the codes of practice, because some of them are devolved. I want to highlight that, because regardless of the emotional stories that we will hear today, we need to mindful that the Bill has an impact on legislation in Wales. It is very important that if the Bill does go through today, those discussions are had, because everybody’s life matters, and we have to get this legislation right.
I do not want to take up any more time, but I thank all my hon. Friends and, in particular, my hon. Friend the Member for Spen Valley, who has been an absolute gem.
Dr Ben Spencer (Runnymede and Weybridge) (Con)
Prior to my election to Parliament, as a consultant psychiatrist with a PhD in decision-making capacity, I would have met both criteria to be a medical expert assessor under clause 9(3)(b), so I have a particular perspective as someone who, in different circumstances, might have been called upon to make these assessments.
I strongly believe that we should respect and support the right to bodily autonomy for people with full decision-making capacity, subject to the caveat that it does not cause serious harm to others. I argued for this when I was on the working group of the independent review of the Mental Health Act 1983 and on the pre-legislative scrutiny Committee on the Mental Health Bill, which, among other things, aims to prevent people from coming to harm when suffering from severe mental illness. These reforms were debated in the House of Lords this week, and they demonstrate how Parliament should legislate in complex areas that balance individual autonomy and risk.
In contrast, as a private Member’s Bill, there is limited ability for scrutinising this Bill’s provisions. It has had no independent review, no pre-legislative scrutiny and no impact assessments. Many MPs support the principle of assisted dying yet have concerns about implementation, resource implications and safeguarding. That is why I, along with colleagues on both sides of the House, tabled a reasoned amendment calling for an independent review and consultation before a vote in Parliament, to provide a third way through. I thank the Members who supported the amendment, particularly the hon. Members for Shipley (Anna Dixon) and for Twickenham (Munira Wilson), for their work and their extensive and careful consideration.
Although the general debate on assisted dying may focus largely on the principles, legislation must address the limits to and the safeguards on consent. Should people be able to agree to a medically assisted death? If so, what restrictions, if any, should there be on people who can make this decision—age, capacity, terminal illness, intolerable suffering? And then, what safeguards are there to uphold these limits and to prevent abuse—assessments by two doctors, judicial scrutiny?
Given that the main argument I see in favour of assisted dying is the exercise of personal autonomy, I believe the most substantive issues we need to wrestle with are the limits that we set. Why is this Bill limited to the terminally ill and not those who are suffering without that being terminal? What even comes within the scope of terminal illness? With the refusal of treatment and medication, conditions such as type 1 diabetes and HIV can be designated as terminal, despite being fully treatable.
There are many questions, but in this Bill the most prominent problem is that, in a legal context, if the availability of assisted dying is limited only to those who are terminally ill, it is discriminatory either to those with or without terminal illness. Either their right to autonomy is greater than others’, or the value of their life is worth less.
We must also ask whether autonomy can be exercised where there is no choice. If good palliative care is simply not available, can we really rely on this as a true and free decision? I would argue that we cannot, and that this Bill does not safeguard against coercion through state neglect.
Dr Spencer
I usually would, but unfortunately that would impact on other Members who wish to speak. I apologise.
What is fundamental to me, given my interest in capacity, is that we have not considered how much human decision making is driven by altruistic intentions. “I did it for my children” is rightly a primary motivation in many settings, but as a society are we comfortable with a decision to seek a medically assisted death so as not to be a burden on one’s family or to save them money?
This will not impact on capacity. We cannot pretend that capacity assessments will be a shield for these moral concerns. Where is the line, if there is one, between indirect coercion and the natural human responses in a stressed family unit looking after a sick loved one?
I believe that we could introduce legislation on assisted dying that has fully reviewed and addressed these issues, but parliamentarians must deal with what we have in front of us today. Proponents on both sides of the debate frame this vote on Second Reading as a vote on the principle of assisted dying, but in reality it is a vote on implementation as put forward in this Bill.
As a former mental health doctor, I am proud that I was there for the most vulnerable. Today, I think about those without a voice in this debate or in the TV studios. I think about the elderly woman in the care home with mild cognitive impairment, who retains capacity but is nevertheless vulnerable to coercion and undue influence, or the sick mother whose child may lose their job or their relationship due to the burden of caring responsibilities. The Bill would not protect them. It risks placing implicit pressure on people already vulnerable at a time of life when they should receive our unwavering care and support. We should and must vote it down.
Dame Meg Hillier (Hackney South and Shoreditch) (Lab/Co-op)
In my brief remarks today, I want to touch on principle, policy and practice. We have to be very clear that we are having a debate not just on the principle, but on the Bill. The principle at stake is that we would cross a Rubicon whereby someone who is terminally ill, according to the definition in the Bill, is assisted by the state to die. That is a fundamental change in the relationship between the state and the citizen, and the patient and their doctor. If we have a scintilla of doubt about allowing the state that power, we should vote against the Bill today.
Like most of us, I came into politics partly to stand up for the vulnerable, and we have heard heartbreaking stories today about those vulnerable at the point of death. We have also heard—and I concur completely with my right hon. Friend the Member for Hackney North and Stoke Newington (Ms Abbott)—about those who are vulnerable for other reasons and who could be coerced or persuaded down this route.
I have had the privilege of being around the hospice movement for nearly 50 years, as my father established one of the first national health service hospices in this country. I saw what he did as a doctor in a world where death was not talked about, where surgeons would say, “We’ll whip this bit out and you’ll be fine.” He would be one of the first to have to tell the patient that they were actually going to die. The work that he did, on the back of giants such as Dame Cicely Saunders, is something we should be proud of. We were the first country in the world to recognise palliative care as a separate profession, and some of the tragedies we have heard about today arose from a failure in that system. A failure in palliative care and support is not a reason to continue.
I have personal experience of this. Many hon. Members will remember when my daughter was very ill a few years ago. I had not intended to speak about this today, but she was admitted to hospital as a teenager with acute pancreatitis. The Bill would not have covered her, but I did not know for five days—in fact, many months—whether she would live or die. For those first five days she did not sleep and she did not eat, and she was crying out in pain. I saw what good medicine can do. It palliated that pain and got her to a place where, although she was unable to eat for two and a half months, she was saved and her pain was managed. Our best friends were the pain nurses and the anaesthetists. I have other examples of another family member, but I do not have time to go into them today.
I hope my daughter forgives me for raising her personal situation in the House today—
Lola McEvoy
Will my hon. Friend give way? I pay tribute to her for the strength that she is showing. Indeed, I pay tribute to all Members on both sides of the House who are dealing with this very difficult issue. Does she agree that we already have assisted dying in this country? Legislation already allows for choice, proving that people would be able to die at home with carefully administered, practitioner-led pain management. Does she agree that the inconsistency of this application of good pain management at the end of life, causing compassionate legislators to feel that the only option is to vote for the Bill, is a failure of our existing national health system, and does she—
Madam Deputy Speaker (Caroline Nokes)
Order. Interventions will have to be short in this debate because many Members wish to speak, so perhaps that is enough.
Dame Meg Hillier
I thank my hon. Friend for that intervention. She is absolutely right. When we see the system working, it is great, but some of what we have heard today has referred to a failure of the system. That cannot be a reason for us to accept the Bill today. For more than 30 years I have been scrutinising the policies and actions of public bodies and seeing the mistakes that they make, both in the care sector when I was in local government and more recently as Chair of the Public Accounts Committee.
Mr Adnan Hussain (Blackburn) (Ind)
The time for us to make this decision is wrong, frankly. At a time when 44,000 terminally ill pensioners are set to lose their winter fuel allowance—indeed, many of them have lost it—we are discussing whether we will pass a Bill, a state-sanctioned Bill, dealing with a taboo that many of us are reluctant to talk about.
Dame Meg Hillier
Where I do agree with the hon. Gentleman is that the time is not right. We have not had the proper discussions about palliative care. Some of us have been trying to talk about it for many years, and we need to ensure that this debate does not stop today, but the Bill must stop today. It is not developed to deliver the palliative care resource that we need. I do want to touch on the policy, but let me first return to the point that I was making before the hon. Gentleman’s intervention.
We have seen many failures in the system, including contaminated blood, and whistleblowing in the NHS repeatedly shows such failures. There is great trust among those who support the Bill that these safeguards will deliver. I will not go into the details, because others have already done so, and I am sure that many more will, but we made coercive control illegal in 2015, and although the Bill refers to safeguards, I fear that that will not pick up coercive control. When we ruled it to be illegal, we thought that was a moment of progress in the House.
Given the time, I will now move on to some of the practical challenges. My constituents are struggling to see doctors face to face, and seeing the same doctor twice seems like a miracle in today’s Britain. My right hon. Friend the Health Secretary is trying to sort it out, but it will take a long time. We need to sort out our battling health service, we need to support palliative care, and we need to discuss what a good death is. Cicely Saunders campaigned and triumphed to ensure that we had one of the best hospice movements in the world.
If Members have any doubt in their minds about the impact of the Bill on people who do not have the same capacity as those who are talking about this in the television and radio studios, they should think of those in my constituency who have poor English, or the woman who came to see me a month ago with terrible pain in her gall bladder. Removing it would have been a simple daytime operation, but she did not understand what the doctor had told her, and she was not going to have her gall bladder taken out because she did not know what it meant to be without a gall bladder. Let me say this to those Members: if someone who was English, a bright woman in her 60s, was unable to challenge what was said to her and to have that conversation with a doctor, just think what passing the Bill today would mean for many more vulnerable people.
I thank the House for its indulgence.
Sir Edward Leigh (Gainsborough) (Con)
I pay tribute to the hon. Member for Hackney South and Shoreditch (Dame Meg Hillier), and I want to follow her in talking about palliative care. Let me start by reading an email that was sent to me only yesterday by a personal friend and constituent:
“I apologise for adding to the thousands of emails you will be receiving. I just wanted to tell you why I oppose the right to die Bill. I know you are aware of the experience I had when my husband was dying. In hospital we had a dreadful experience because they had no end-of-life care and he suffered. Once in the Hospice it was a different story and he received the loving care he rightly deserved.
My argument is that, instead of assisted dying, we should be spending much more money on end-of-life care and funding the wonderful Hospice movement. Thank you for reading this.”
I will read another letter, from a doctor, which I think encapsulates some of the problems that we encounter in this issue:
“Only recently, I was giving my condolences to a grieving woman who had lost her husband in the early hours. He had been given a few small doses of pain relief and mild sedatives over the last few nights for symptom control and had passed away peacefully at her side. She asked me in all seriousness, ‘Doctor, did the nurses give him something to make him die quicker last night?’ This was an awful lingering doubt that she had. I was able to firmly reassure her that, no, the medication would not have sped up his passing.
For her, and the vast majority of other patients, doctors are there to prolong life and palliate symptoms. Were this to change, then we would not be doctors in the eyes of many, but bringers of death, agents of a state which counts its weakest members as expendable and worthy of nothing but an early grave.
I do not want to be a member of a profession which has that reputation or role”.
Those are two witnesses who have written to me. I have taken an increasing interest in this whole issue of palliative care, and the law frankly—
Sir Edward Leigh
Will the hon. Gentleman forgive me if I do not? I know that many people want to speak. I just want to develop this argument, then I will finish.
The law is so unclear. I have talked to a number of palliative care specialists, and they say that we can give as much morphine as we want to a patient and we will not kill them, but there is real doubt in the minds of the public. A lot of the impetus around this debate, and the reason why people in opinion polls are apparently supportive of this measure, is that they are terrified of dying in pain. There is no need for this. When I talk to consultants and practitioners in palliative care, they say that they can manage pain. I was struck by a very touching email that was sent to me by a constituent, who actually supports the Bill on the grounds that when his wife was dying, and he was begging the doctor in a national health hospital to give her more morphine, the doctor said, “If I did that, I would be breaking the law.”
I can see the Health Secretary is sitting here, and I really think that if we are going to have a serious debate about this issue, we need to have something equivalent to a royal commission to determine what doctors can and cannot do. It is essential that we really reassure the public. There is tremendous interest in and huge doubt about this issue. Many people are conflicted, and we have heard many moving stories about people’s fear of dying in agony, but until we clear this up, I do not think that we can make the progress that this issue deserves. Yes, we have to fund our hospice movement seriously. It is very worrying that we are going to fund the NHS to fund death, but that we are not adequately funding our hospice movement.
Before we take this momentous decision, we have to be realistic about it: if the Bill were to pass at 2.30 pm, that would be it. I do not believe that a private Member’s Bill, which has only five hours of debate and on which many Members of Parliament will not be given time to speak, is the right mechanism. In the last Parliament, we discussed a certain subject that we all know about—it was a very different issue. We had hundreds of hours of debate, questions and scores of civil servants crawling over the issue. Surely this issue is even more important. Surely we should have had more than just two or three weeks to consider this Bill. We should be looking at the detail, because the devil is in the detail in respect of possible coercion, the facilities available to the hospice movement and the issues I have talked about, including the lack of clarity in the law as to how we can or cannot relieve pain. Can we not pause a moment? Those are the practical points that I want to make.
This is so important: the futures of so many vulnerable people are at stake. I was struck by the comment made earlier by the hon. Member for Brent West (Barry Gardiner) that we cannot consider this issue just in terms of individual hard cases. We must consider it in terms of society as a whole. What sort of society are we? Are we a society that loves our NHS, that loves life, that loves caring and that loves the hospice movement? Or are we a society that believes that there is despair? I will vote for hope at 2.30 and I will vote against the Bill.
Peter Prinsley (Bury St Edmunds and Stowmarket) (Lab)
I asked the ear, nose and throat nurse I have worked with for 20 years about assisted dying, and she said it is an essential change. There is no doubt in her mind. Like me, she has seen the unbearable distress that some head and neck cancers cause, and she knows of the very difficult deaths of some of our patients, despite excellent palliative care. It is this experience that has changed my mind. When I was a young doctor, I thought it unconscionable, but now I am an old doctor and I feel sure it is the right change.
I have seen uncontrollable pain, choking and, I am sorry to say, the frightful sight of a man bleeding to death while conscious, as a cancer had eaten away at the carotid artery. It is called a carotid blowout. I know the terrifying loss of dignity and control in the last days of life. I am speaking here of people who are dying, not people living well who have chronic or terminal diseases. We are talking about people at the end of their lives wishing to choose the time and place to die. This is not some slippery slope. We are shortening death, not life, for our patients. This is not life or death; this is death or death.
Coercion and manipulation have been spoken about and are no doubt feared, but the danger of no change to the law is a greater fear for those who are dying and wish to have choice. The very real fear of loss of dignity and control are at the heart of it. Do not underestimate that. There are strict safeguards in this tightly written Bill, and I fervently hope there will be the opportunity to refine them as it progresses.
Steve Witherden (Montgomeryshire and Glyndŵr) (Lab)
Assisted dying is already occurring in unregulated ways, with up to 650 terminally ill people taking their own lives each year, often in traumatic circumstances, causing additional pain for their loved ones. The Bill promotes freedom of choice at the end of life in a controlled and regulated manner. Does my hon. Friend agree that legal assisted dying would provide essential safeguards where there currently are none?
Peter Prinsley
I thank my hon. Friend for that timely intervention. Some may say that we do not have the resources to introduce this change, and many may say that we must invest in palliative care, which of course we must. But I see assisted dying as complementary to, not an alternative to, palliative care.
Melanie Ward
My hon. Friend briefly mentioned coercion, and the well-held fears of many of us in the House about the risk of coercion, particularly for vulnerable people. What does he make of the fact that in Washington state, where the relevant law is restricted to terminally ill people like this Bill, last year 59% of those who went through with an assisted death did so because they feared being “a burden” to “family, friends or care givers”? In Oregon, the proportion last year was 43%.
Peter Prinsley
I respect my hon. Friend’s report of the statistics, about which I have no further information.
Colleagues know the gravity of the law that we are discussing and might feel that the moral weight of such a change is simply too great to bear; they may fear that our wisdom is insufficient. But I urge us to be brave today and allow the Bill to progress in this new Parliament.
Finally, a prison chaplain told me only this week of a gentle old man he met in prison, serving life for agreeing against every instinct in a last act of love to suffocate his wife, who was dying in uncontrollable agony. We are a compassionate people and we can do much better than that.
Several hon. Members rose—
Madam Deputy Speaker (Ms Nusrat Ghani)
Order. Colleagues will realise that we have only a few hours to go. Without absolute speaking limits, if colleagues could keep their contributions to shy of five minutes, I will do my best to get in as many speakers as possible.
Tim Farron (Westmorland and Lonsdale) (LD)
The motives of those proposing the Bill are grounded in compassion—in the heat of this debate, I want to seriously acknowledge that—particularly the hon. Member for Spen Valley (Kim Leadbeater), who has conducted herself with great dignity throughout. Neither side has a monopoly on compassion—I will always be affected by watching my mum suffer at her death at the age I am now—so let us not think badly of one another’s motives; let us instead be courteous and let us be curious.
My opposition to the Bill is grounded in compassion. To legalise assisted dying would be to create the space for coercion that would undoubtedly see people die who would not otherwise have chosen to do so. There are no safeguards in the Bill that would prevent that.
Tim Farron
I had better not.
To be fair, no safeguards would be possible, even if we were not going through this hasty process. First, there is the risk of self-coercion. Many of us will have heard older relatives utter words similar to, “I am a burden to you. You would be better off without me.” We all know reasonably instinctively that people will present it as making a sovereign choice, but it will be a choice born out of coercion. Unless there is a clause in the Bill that I have missed to employ mind readers, no amount of doctors, safeguards or bureaucratic mechanisms will prevent those who self-coerce from opting to die simply because they assume that no matter what their loved ones say, everyone would be better off if they were dead.
To add to the stats we just heard from the hon. Member for Cowdenbeath and Kirkcaldy (Melanie Ward), we know that in Canada more than one in three people opting for assisted dying gave as their reason for choosing to die that they felt they were a burden on others. Honestly, I do not see how we need any further discussion to push us into the No Lobby than that clear evidence from where it is legal.
Secondly, there is coercive control. In the last Parliament, we passed groundbreaking and long-overdue legislation on domestic violence. As society’s understanding of that often hidden evil has developed, our eyes have been opened to one horrific factor in particular: that of insidious, manipulative coercive control. Thousands of people have been—and are today—victims of those who seek to manipulate their will, take over their lives and coerce them into believing that their perpetrator’s will is actually their will. We all know through our constituency casework of people who have been victims. One common theme is that victims often did not realise that they were being controlled until long afterwards. It can take years for the penny to drop. I do not need to spell it out, then—do I?—that for those coerced into choosing assisted dying, that penny will never drop. They will no longer be with us.
Thirdly, people will choose assisted dying because of their pain when they would not do if that pain was properly managed. Here is where the evidence from other countries becomes truly disturbing—in fact, terrifying. In the last decade, the countries in Europe without assisted dying increased palliative care investment by over three times more than those that had legalised it. In the United States, those states without assisted dying saw an increase in the size of their palliative care teams that was also three times greater than that in states that had legalised it. That is clearly no accident and no coincidence. Indeed, the group that have contacted me who are most vociferously against the Bill are palliative care doctors.
Sorcha Eastwood (Lagan Valley) (Alliance)
The discussion we are having—and I pay tribute to the hon. Member for Spen Valley (Kim Leadbeater) for the way that she has conducted it—almost implies that palliative care is of the same excellent standard across the UK. I have to inform the House that it is not, which is a matter of deep regret. I cannot stand by the Bill because many vulnerable, marginalised people will be impacted by it. I want to support and affirm life, and I want that to be with dignity.
Tim Farron
I thank the hon. Lady for her important and powerful intervention. Those palliative care doctors who have been in touch with me know that to opt for legalised assisted dying is to opt, inevitably, to divert resources away from palliative care—that is the evidence. I spoke to one of those palliative care doctors this week, who works in a hospice. She said:
“The only patients I care for, are those who are dying”.
We all know what is coming. Assisted dying means a shift in focus away from helping people to live in dignity and comfort, towards simply helping people to die. Then, it becomes a self-fulfilling prophecy. Let us not kid ourselves: palliative care is a postcode lottery in this country, especially for the poor and the old. If the motivation of those who choose assisted dying is to end their pain, we can be absolutely certain that those NHS trusts with the weakest palliative care offer will be those with the highest incidence of people choosing to die. In other words, it will not really be their choice at all.
An observation made to me by a senior oncologist just last week was that there are fewer more stressful situations in a person’s life than to be given a terminal diagnosis—I remember being with my mum as she was given hers—and to be told you are going to die. The oncologist then explained that among terminally ill people there is a vast amount of severe but undiagnosed depression and psychological illness. Similar but distinct from the danger of self-coercion, there is nothing in the Bill to safeguard against people who suffer like that from choosing to die before their time, yet in so many cases it will be people’s mental health that leads them to choose to die, not their physical condition. We simply cannot be all right with that.
Here we are, on the precipice of agreeing to sanction and support the deaths of people in despair. Our society has chosen a dystopian and contagious path if it chooses to facilitate the death of those who have a terminal illness rather than standing with them, weeping with them, valuing them and loving them against the desolation that any of us would feel if we were given a diagnosis of that sort. It is no wonder that the Government’s own suicide prevention adviser is strongly opposed to the Bill.
I totally respect that many of my colleagues in our corner of the House—my fellow liberals—will take a different view. I am opposed to the Bill because I am a liberal. Libertarians believe that personal liberty is so important that there can be no fetters on it. But I am liberal, not a libertarian. I believe that freedom is essential and that the rights of the individual underpin a decent society, but my rights must be held in check if they nullify your rights.
Since we know—we really do—that to legalise assisted dying is to permit people to die who will self-coerce, as a consequence of manipulative coercive control, outrageously not because of a real, sovereign choice but because of a heartbreaking Hobson’s choice due to inadequate palliative care, I have no right to impose that ultimate and most appalling constraint on the freedom of the most vulnerable in our society. I urge all of us to stand in defence of those most vulnerable people, to defiantly defend their liberty, to make a renewed commitment to world-class palliative care and to human dignity, and to reject the Bill.
Several hon. Members rose—
Madam Deputy Speaker (Ms Nusrat Ghani)
Order. In consideration of colleagues, please keep speeches under five minutes.
Dr Marie Tidball (Penistone and Stocksbridge) (Lab)
Today’s decision has been one of the hardest that I have had to make. In my career in disability law and policy, I chose not to focus on debates about whether disabled people should be born or whether we should die. Instead, I focused on enabling disabled people to live better, more fulfilling lives.
Today, I find myself voting in a way that I thought I never would. I will vote in favour of moving the Bill to the next stage of the legislative process. That has been a difficult journey for me. I have arrived here by looking at the evidence, reflecting on my own lived experience and listening to the many, many constituents who have written to me in support of the Bill, sharing their compelling and tragic stories of death—death which did not come with dignity or respect.
In reflecting on my own life, one moment from my childhood stood out. When I was six years old, I had major surgery on my hips. I was in body plaster from my chest to my ankles, and in so much pain and requiring so much morphine that my skin began to itch. I remember vividly laying in a hospital bed in Sheffield Children’s hospital and saying to my parents, “I want to die. Please let me die.” I needed to escape from the body I was inhabiting. That moment has come back to me all these years later. That moment made it clear to me that if the Bill was about intolerable suffering, I would not vote for it.
I have subsequently had a good life, a fulfilling life, a life where I have worked towards ensuring disabled people are valued by our society. But that moment also gave me a glimpse of how I would want to live my death: just as I have lived my life, empowered by choices available to me; living that death with dignity and respect, and having the comfort of knowing that I might have control over that very difficult time. For so often, control is taken away from disabled people in all sorts of circumstances.
In order to ensure that there is compassionate choice at the end of life, it is right that the Bill is tightly drawn around the final stage of terminal illness for adults and includes the strongest safeguards. The choice of assisted dying as one option for adults when facing six months’ terminal illness must be set alongside the choice of receiving the best possible palliative and end of life care, or it is no choice at all.
Having analysed the Bill closely, therefore, there are changes I would want to see in Committee to strengthen those options and ensure the way that choice is presented by medical practitioners is always in the round. People deserve dignity in death, and for those who do not choose to end their lives in this way, they and their loved ones should feel reassured and safe in the knowledge they will receive the very best of care. I would also want to ensure that the final stages of the Bill properly define “dishonesty”, “coercion” and “pressure”. I think it is necessary to embed mandatory language in the Bill around the need for a code of practice on palliative care, as well as improving the regulations on training for medical practitioners. I trust my hon. Friend the Member for Spen Valley (Kim Leadbeater) to champion those amendments and to continue to diligently listen to Members, as she has throughout this process.
However people vote today in this House—a decision of conscience—it is incumbent on all of us to commit to improve palliative, end of life and adult social care. It must be the start of the work that we do in this place to ensure the very highest standards in these areas. That will be a very great legacy indeed: giving people the dignity they need in the moment of death. For many of us across the Chamber, considering these issues has been extremely hard and upsetting. We have had to go to the very depths of our selves to understand what choice we will make today. While we may enter different voting Lobbies, we leave this Chamber shoulder to shoulder. I know we will all work in our own ways to make systemic change to improve the lives of our constituents, and people up and down this country.
Several hon. Members rose—
David Davis (Goole and Pocklington) (Con)
Thank you, Madam Deputy Speaker. I will try to keep it brief and stick with procedure.
The decision we are taking today must be, for most Members, one of the most painful decisions. It certainly is for me. I am someone who has changed his position. I am a believer in the sanctity of life, but I am also an antagonist to torture and misery at the end of life. Accordingly, I intend to vote for the Bill on Second Reading. I say to those who have made procedural comments that Second Reading is a point of principle, not a point of conclusion. I have changed my position because since the scandal of Dr Shipman and the murders he carried out, the behaviour of the health service has changed. I have witnessed, with constituents in particular, any number of people who have died slowly and in agony beyond the reach of palliative care—the hon. Member for Bury St Edmunds and Stowmarket (Peter Prinsley) made the point brilliantly—so that no matter how well we do it, we cannot fix that problem.
Secondly, I am going to disagree with my right hon. Friend the Member for North West Hampshire (Kit Malthouse): it is not insulting to critique what others who have tried this have done. The countries that have tried this provide a wide range of examples and outcomes. If on Third Reading I think that the outcome we are heading towards is Belgium, I will vote against; and if the outcome is Canada, I will probably vote against. If it is Australia, I will vote in favour. That is what the next stage of this process is about.
I say to both the Bill’s sponsors that it has a number of areas that they know I think they have to put right—about a dozen, in truth.
David Davis
I am afraid not, as I have only five minutes.
I will pick one of those areas, as it is technical and awkward. Clause 4(2) appears to give doctors the right to initiate the process. But after the “Do not resuscitate” scandal during the covid crisis, I do not want that at any price—I do not want the state initiating this process. That is critical for me. I am really making the point that the decision on Second Reading is about principle, not outcome.
The hon. Member for Spen Valley (Kim Leadbeater) has said that she will work hard to make the Committee work. I am sure she will, and she may succeed. But I say this to the Government. I understand perfectly well that they are trying to maintain a route of strict neutrality, but there is a distinction between neutrality and responsibility. They need to focus on responsibility. This Bill is more important than most of the Bills in their manifesto; I am not trying to be rude. Is the hon. Member for Clacton (Nigel Farage) here? He got mobbed over breakfast by people talking about this. More people in the Dog and Duck care about this than they do about most other things that we are doing, so it deserves four days on Report in Government time over the course of several weeks.
We do not need a royal commission. The House can do this, but it needs to be given the option. I say to the Government that the path of responsibility is to give us the time to get this right. If we get it right, it will be one of the things that we can be proudest of in the coming years. I reiterate that I want the Bill to succeed. It is more important than most Bills that we handle. It cannot be dealt with in five hours here and a few hours in Committee. I will vote for it today, but I want the Government to help me be able to vote for a good Bill at the end.
Madam Deputy Speaker
I ask Members to please face the Chair, so that we can pick them up on the microphones.
Anna Dixon (Shipley) (Lab)
I am honoured to have been called in this debate. It has been moving to hear contributions from across the House. Feelings have been particularly raw for me, as I witnessed my close friend Sharon dying of cancer over the last few months aged just 55. She had good access to palliative and hospice care, and died at home with her sister and niece. But even with that support, her final days were difficult. Her sister wrote to me:
“she was highly distressed, everyday she said she’d had enough and wanted to die—it was very undignified for her and it was heartbreaking to observe but be powerless to help.”
Each story we hear of loss and grief is unique. As legislators, we must consider everyone who will be affected, both directly and indirectly, by a change in the law. The public and the courts are rightly looking to Parliament to answer the question of whether the provision of assisted suicide should be a legal option. It is incumbent on us as parliamentarians to do the job properly.
Like many other Members, I have spent the past weeks listening to constituents and professionals in my Shipley constituency and experts in this place. I have read numerous reports and articles. As well as the moral and ethical dilemmas, there are many complex legal and practical considerations that need careful examination. I take a different view from the right hon. Member for Goole and Pocklington (David Davis), who has just spoken. I welcome the reassurances from my hon. Friend the Member for Spen Valley (Kim Leadbeater) and her commitment that the Bill Committee should take evidence, but I am not confident that a private Member’s Bill process will be able to adequately address the issues. That is why I have co-sponsored the cross-party amendment, tabled by my colleague the hon. Member for Runnymede and Weybridge (Dr Spencer), to call for an independent review and a systematic public consultation on these legal changes and for an independent assessment of the provision of palliative care.
With a background in health and social care, and specifically in ageing, I am particularly mindful of the context of the Bill and I wish to make three brief observations that concern me. First, we have heard many times about inequalities in access to palliative and end-of-life care. According to Hospice UK some 100,000 people die each year who could benefit from end-of-life care but do not receive it. Those who are non-white and from lower socioeconomic backgrounds are less likely to get care. Unless terminally ill people are confident of access to high quality end-of-life care, how can they make an informed choice about assisted dying? I believe that investment in palliative care must come before a change in the law is implemented.
My second point is about the failure to reform social care. Some people have to spend their life savings, including the value of their home, on care. Much of the responsibility for providing care falls to family members who fill the gap. Older and disabled people with a terminal illness may feel an unspoken pressure to go down the route of assisted dying to protect their inheritance, or because they do not want to be a burden. There is a real, direct risk of coercion. Annually there are 400,000 cases of domestic abuse against older people in England and Wales.
My third concern is that the NHS is on its knees, as outlined in the Darzi report, and an impact assessment is needed to understand fully the cost of implementation to the NHS. Do we have the doctors? What additional training is required? What is the opportunity cost of the necessary but lengthy process of establishing consent, capacity, and absence of coercion? Without that we risk making dying legal, but finding that it is available only to those who can pay.
I will conclude my remarks, respectful of the fact that many colleagues want to speak. I recognise that people can benefit from a potential change in the law—people such as my friend Sharon, for whom palliative care was unable to relieve her suffering. However, there are also many who could be put at risk by a change in the law, and other direct and indirect costs and consequences that need to be weighed up. I believe we should adopt the precautionary principle in this case, and without a proper public consultation and a detailed examination, I will be unable to support the Bill today.
Carla Lockhart (Upper Bann) (DUP)
Like many others across the House I come to this debate with personal experience. Many of us have been at the bedside of a loved one as they have neared the end of their life. For me that was on 11 June 2023, when my dad’s earthly journey ended. Terminally ill for five years with a painful, aggressive cancer, he had a faith that sustained him and a health service that sought to support, care, comfort and preserve his life. Consultants and medical staff went over and above to ensure that he got every opportunity to see his family, and particularly his grandchildren, grow up. Did I want to see my dad suffer? Absolutely not. Equally, though, those difficult times provided us with an opportunity to care for and express love for a person whose life we valued.
The root of my conviction is this: life in all its forms is of inherent worth and value. While I have come to that conclusion partly because of my faith, like all Members across the House I have listened carefully to the evidence in coming to my conclusion on the danger that this Bill represents. Each individual person is of extraordinary value, not because of their capacity, intelligence or appearance, or for any reason other than that they are human.
It is right that we should rage against death, with its suffering and pain, as it is not natural, but the Bill takes that rational fear to an irrational and dangerous conclusion. The answer to a fear of death or of dying badly, or even a desire for a good death, is not logically to legalise a means of bringing about death in a more efficient or sanitised state-sponsored fashion. We are having the wrong debate today. We should be debating how as a society we can improve an individual’s end-of-life experience through improved investment in end-of-life and palliative care, and the very best medical or hospice facilities. I strongly support efforts to that end, to improve how we provide for those who are suffering in their final months of life rather than seeking to end their life more quickly than is necessary, as this Bill does.
Tragically, at the moment one in four people do not have access to the care they need at the end of life. Many are unable to see their GP and get the pain medication they need as they face their last few months. It is a broken system, and one that the Government have pledged to fix. Surely that should be the priority, rather than introducing a state service that ends life. We need to debate how to properly fund the healthcare system we have, but the Bill would halt that debate and divert much-needed funding for better palliative care into ending life, not preserving it.
The Bill undermines the foundation on which our NHS is built—to preserve and protect life. It is not about individual pain; it is about a societal change that would end and devalue lives. It puts at risk the lives of vulnerable and marginalised people across our communities, with wholly inadequate safeguards against coercion. As has been the case in every country where such legislation has been introduced, it would see the rapid expansion of eligibility criteria, and it cannot protect against the unreliability of a terminal diagnosis. When we look at the complications of the drugs used in places such as Oregon, we see that it would not guarantee a good death.
Death is final. Today I have stood up for what is right, told the truth and warned of the dangers of this rushed and ill thought out Bill. I urge the same honesty from those who support it. This Bill is not the answer to end-of-life care, and that is why I and my Democratic Unionist party colleagues will vote against it.
Rachel Hopkins (Luton South and South Bedfordshire) (Lab)
I am glad to have the opportunity to speak in this hugely significant debate, and as a co-sponsor of the Bill to support my hon. Friend the Member for Spen Valley (Kim Leadbeater) in advocating choice at the end of life. Since I came into this place five years ago I have spoken many times about assisted dying and the desperate need for reform of the law, and I believe this Bill is a landmark opportunity to change the status quo once for all, so that mentally competent terminally ill adults have the right to choose a peaceful, safe and compassionate death.
We hold a responsibility in this place to legislate for all people across the United Kingdom—for society. The overwhelming opinion of the public is clear. A poll conducted earlier this year found that 75% of people would support a change in the law to make it legal for terminally ill adults to access assisted dying in the UK.
The current blanket ban on assisted dying forces terminally ill people to suffer against their will as they near the end of their life, while loved ones watch on helplessly. Some choose to avoid that fate and seek assisted death abroad, but that comes at a substantial cost of around £15,000 to travel to Switzerland for that purpose. That highlights systemic inequality, whereby only those with the necessary financial means have access to a choice over the timing and manner of their death.
Rachel Hopkins
I will continue, I am afraid.
As a humanist, I believe we have but one life and that we should live it well and make it meaningful. I believe that individuals should have autonomy in life. Similarly, I believe that at the end of life every person should have agency and the right to die with dignity and to a safe and painless death, on their own terms, subject of course to strong safeguards. I believe that the Bill contains stringent safeguards.
Although my humanist beliefs have contributed to my view, personal experience when young sparked my initial questions about the manner in which our lives end. My grandfather, Harold Hopkins, was an optical physicist and is remembered as one of the most innovative scientists of modern times. Many of his inventions are in daily use throughout the world, including zoom lenses, coherent fibre-optics and rod-lens endoscopes, which revolutionised modern keyhole surgery.
Unfortunately, my grandfather was not immune to the grip of a cruel terminal illness, and he sadly suffered greatly in the final weeks of his life, while battling prostate and secondary cancers, rendered blind during his final days, which was a cruel irony for a man who did so much to advance optics. But it was the haunted look on my father’s face when he arrived home having spent the final few days with Harold, who was in terrible pain and suffering before he finally died, that had a lasting impression on me. Surely, in a modern society, if we are able to live a good life, we must be able to have a good death.
My grandfather was just one of many who have faced such a fate. I have heard from many constituents and from other families—many who are here today—who have shared their own stories of watching their loved ones die in unnecessary pain and indignity. While many have raised concerns around the need for better funded and supported palliative care services in our country, I reiterate the point that the Bill does not represent an either/or proposal.
As my hon. Friend the Member for Spen Valley has said over the past few weeks, at its core this legislation is about not ending life, but shortening death. This is fundamentally an issue of dignity, compassion and humanity, and I encourage all Members across the House to use their power as elected representatives to alleviate the needless pain of thousands of individuals and their families by taking the first step towards providing choice at the end of life by legalising assisted dying.
Alicia Kearns (Rutland and Stamford) (Con)
To discuss matters of life and death is to recognise the gravity of one’s role as a Member of Parliament. The Bill before us seeks to shorten the suffering of the terminally ill—those with just six months to live—and no one else. For too many, death is not a singular moment but an excruciating journey of terror and agony as your body turns on you.
Arguments that we must wait for palliative care to improve in our country are a logical fallacy. The Bill does not prevent us from improving our palliative care system, contrary to what has been said today in the Chamber. In evidence to the Health and Social Care Committee, Hospice UK said that:
“it would be totally inappropriate for us to suggest or even imply that hospice and palliative care services can somehow address…pain in all circumstances.”
Imagine you have cancer that day by day is breaking every individual vertebra in your body, one by one, and there is nothing that can take away the pain—that is how my mother lost her life. Her last words were, “I cannot go on like this,” and, thankfully for her, there were only a few more days of pain; however, for others, there will be months more. Before they get to that six-month period, people will have suffered years of excruciating agony that palliative care cannot resolve. Yes, we must improve palliative care, and I will fight for that.
Arguments that this legislation would be the beginning of a slippery slope are not reflected by the majority of legislators, such as Australia and across multiple states in the USA, where such policies have not been expanded. Again, the Health and Social Care Committee has told us that where terminal illness was the basis—not suffering—as for this Bill, the law has not changed.
As a Conservative, freedom, choice and personal responsibility shape my decision making—until those freedoms cause harm to others. I do not see the role of legislation as imposing moral convictions. It is our job to protect choice. I say to those whose religious beliefs drive their arguments today that I will always defend their right to practise their faith and protect their own life choices. However, supporting the choice of others does not diminish the principle of compassion; it recognises respect for individual autonomy. To deny choice to others—especially those with only six months to live, where their personal choice does others no harm—is wrong.
To those concerned about the state mandating powers to decide who can and cannot live, I say that judges already exercise this power. They end lives in far more complicated cases, such as those of children on life support.
On arguments around procedure, we all have to be honest with ourselves: this Bill has been read far more vociferously than most Bills that go through this House. Most Bills over the past 20 years have come to Parliament with far fewer than 14 days to consider them: for the Police, Crime, Sentencing and Courts Bill, we had six days to consider 59 pages; for the Illegal Migration Bill, we had six days to consider far more. We have had sight of this Bill for longer than many others. The idea that a private Member’s Bill is not appropriate is also wrong. Social reform comes through private Members’ Bills: the abolition of the death penalty, the legalisation of abortion and the decriminalisation of homosexuality—all things I hope this House would unite on.
This is the start of the process of debate, and it would be a tragedy if the Bill were defeated today. Members should trust me when I say that I learned early in my career that when we hear promises that things will come later, that is a promise that no action will come at all. The High Court made it clear to my constituent Phil Newby, who has motor neurone disease, that we must make this decision. To those considering abstaining because this is so difficult—and I recognise that it is difficult—I say that we must not shy away from it. I ask colleagues to vote for the Bill in order to allow a long legislative process to proceed and, together, to commit to shortening the suffering of those who are terminally ill in our society, because they deserve that choice.
Paulette Hamilton (Birmingham Erdington) (Lab)
I congratulate my hon. Friend the Member for Spen Valley (Kim Leadbeater) on the way she has conducted this debate. I worked in the NHS as a district nurse for 25 years, working with many terminally ill people. I saw the whole range of human emotion in that time, from joy to grief—everything imaginable. I am also a mum, a daughter, a sister, a wife and a grandmother. I know how crushing it can be when someone we love is terribly ill and how helpless that can make families feel.
It is completely understandable that some would want to feel that they are regaining some control over their circumstances by pursuing an assisted death, but this Bill is not the answer. I simply do not trust that it can be implemented ethically or safely. There are too many blind spots, and it is being rushed through too quickly and with too little scrutiny. It would place enormous pressure on disabled, elderly and poor people to opt to end their lives so as not to be a burden on their loved ones.
The Bill would also do nothing concrete to uplift the hospice and palliative care sectors. All that we have had are promises. According to the Bill, the Secretary of State must ensure that assisted suicide is available. There is no accompanying duty to provide palliative or hospice care to everyone who needs it, leaving those essential services heavily dependent on donations and charity. That is simply unacceptable.
The exercise of coercion or pressure, which are prohibited by the Bill, is difficult—perhaps even impossible—to detect. Families and personal circumstances are complicated. It would take an enormous amount of resources to make this system robust enough to entrust the lives of our loved ones to it. The Bill allows doctors to propose assisted dying to patients. Some of the worst Canadian abuses originated that way. For example, a 51-year-old Canadian cancer patient was notoriously offered death instead of surgery. Even though our proposed system has its differences, this is still a risk that I am not willing to take.
The current law presents us with a clear boundary that can never be crossed. It avoids all slippery slopes, with no room for error. Assisted suicide legislation would replace that with an arbitrary boundary that is rife for misunderstanding, error and, at worse, abuse. Remember: this is all happening in the context of an NHS run into the ground by 14 years of Tory austerity, and the Government have simply not had the time to rectify it. It is not a fair choice as a result.
I will therefore be voting against the Bill and will continue to push for improvements in palliative and hospice care. That is the only way to ensure that no one from any community is left behind.
Sir John Hayes (South Holland and The Deepings) (Con)
I have known well only one person who committed suicide: my former professor. I learnt after his death that he had been haunted by imagined demons for most of his life and, in the later part of his life, hounded by heartless humans. Had assisted suicide been available to him, I am sure that he would have died much earlier. After those demons first visited him, he had a loving wife and three daughters, so he had moments of joy, though most of his life was punctuated by pain. I am just as sure, because I knew him well, that he would have voted against this Bill today, for all our lives are a mix of sorrow and joy.
I will not amplify the arguments about process, although I think it is immensely naive to assume that this Bill could be changed substantially in Committee. As a shadow Minister and a Minister for 19 years, I oversaw many Bills in Committee, and I know what Committees do. They calibrate, refine and improve legislation; they do not fundamentally alter the intent voted for on Second Reading.
Neither shall I talk too much about what happens in other jurisdictions, except to say that it is certainly true that everywhere it has been introduced, assisted dying has expanded—not always by subsequent legislation, but often through judicial interpretation. The idea that we should put this charming but rather naive faith in the judiciary to make these decisions subsequent to the House passing the Bill is just that: innocent—that is the most generous way I can describe it.
What I will talk about is simply this: the Bill would change the relationship between clinicians and patients forever. It would say to the NHS, “Your job is not only to protect and preserve life; it is sometimes to take life.” I am not prepared for our NHS to be changed in that way. Beyond that, the Bill would change society’s view of what life and death are all about. This is not just about individual choices, as hon. Members have said in their interventions and speeches; it is about a collective, communal view on how we see the essence of life and death.
Finally, we have had a civilised debate in this place, but it is very different out there on the mean streets, as each and every one of us knows. There are many cruel, spiteful, ruthless and unkind people in the world, and there are also many vulnerable and frail people. When those two groups collide, the outcome is not good for the second.
I fear this Bill. I will vote against it. I will vote for what a politician in another place once called “the audacity of hope”—hope that we can improve palliative care; hope that we can do better. I fear for the disabled and vulnerable people who would be affected by the provisions of this Bill, which—regardless of the good intentions of its advocates—I believe will fan the flames of fear.
Jake Richards (Rother Valley) (Lab)
I welcome the contributions to this debate from all sides of the House. This is Parliament at its best. I support the Bill and am proud to co-sponsor it. We have all received emails from constituents with harrowing stories of the agonising final days and weeks suffered by loved ones. I have no doubt that those stories will weigh heavily on each of us, however we vote today.
Fundamentally, I believe that if we are able to safely offer peace and empowerment to those at the end of their life, then we have a moral imperative to do so. We are lawmakers, and I also fundamentally support this change because our current legal framework is simply not fit for purpose. Our criminal law is a mess. Four former Directors of Public Prosecutions have told us that change is needed. It is pretty unprecedented for four former Directors of Public Prosecutions, the sole people who make decisions about prosecutions in such cases, to urge Parliament to take action.
In the 2014 Nicklinson judgment, the Supreme Court urged Parliament to take action because the law was not working in this area. The law is chaotic, particularly in how it relates to the argument around coercion. If we vote against this legislation today and it falls, do not think that vulnerable people at the end of their lives will not be subject to coercion this weekend and over the coming weeks. The police will investigate, a coroner will undertake an inquest into the circumstances of any suicide and a prosecution may begin, but all these processes will occur after the individual has died. This Bill would shift the emphasis of such inquiries to before the event, which is more logical, more rational and more humane.
Let me quickly deal with the procedural argument. As the hon. Member for Rutland and Stamford (Alicia Kearns) mentioned, private Members’ Bills were sufficient to reform our abortion laws, abolish the death penalty and change our divorce regime, and a private Member’s Bill was good enough when the issue was last before the House in 2015. I have read every single word of that debate, and there was not a single word of opposition to a private Member’s Bill being the mechanism for such change. Since 2015, there have been Select Committee reports and more evidence from around the world, as other jurisdictions move in the direction of assisted dying. One begins to wonder whether opponents to change are grasping at procedural straws, rather than taking on the principle, as we should at Second Reading.
I appreciate that the decision is difficult for colleagues and I respect views on all sides of the debate, but these moments do not come around often. I urge colleagues to seize the moment, shape the world around us and provide for compassion.
Sir Julian Lewis (New Forest East) (Con)
In the past I have voted against this type of measure, and for one overriding reason: namely, the impracticability of effective safeguards. Even if practical safeguards could be erected against external coercion, I have always felt that there was no prospect whatsoever of having effective safeguards against internal pressures on someone to request assisted dying or even euthanasia.
For example, as we have heard, an elderly person in a care home, knowing that the legacy they could bequeath to their children was being reduced by tens of thousands of pounds every few weeks, would be highly likely to feel obliged to ask to die. I cannot conceive of any safeguard against self-sacrifice of that sort, whether for financial reasons or in order no longer to be a burden on one’s nearest and dearest relatives and friends.
However, there is an additional point that I wish to inject into the debate. In my opinion, the key to this dreadfully difficult conundrum—about end of life care, pain and the possibility of assisted dying—lies, or should lie, in the ability of medical personnel to administer effective pain relief even if it shortens the patient’s remaining time. In my view, there should be no bar on the use of painkilling medication, if that is the only way to ease human suffering, even if it leads to a speedier death—hence the frequent references to putting dying people “on an appropriate pathway.”
It was therefore most alarming to me to read a very important paragraph in a letter sent to me in favour of changing the law and voting for the Bill by my constituent, the distinguished broadcaster Dame Esther Rantzen, in which she explains that doctors no longer feel able to follow this humane course of action since the atrocious Harold Shipman case, which was briefly alluded to by my right hon. Friend the Member for Goole and Pocklington (David Davis). If there has been such a change in regulations, as Dame Esther believes, it is imperative that that should be reversed. That is something positive that could come out of the imminent debate.
Another issue that has been touched on more than once is the uncertainty and the postcode lottery surrounding effective palliative care. Dame Esther’s view is that there are some people, who have some conditions, for whom palliative care never can be effective. Other people expressed the view that there is always a way in which painkilling medication can be used in order to prevent suffering. I suspect the answer to that riddle lies in the fact that that painkilling care, in some cases, might lead to a shortening of life.
Therefore, I conclude that there are three issues that should be in our minds. Can safeguards be effective? My answer to that, I am sorry to say, is still no. Can pain be alleviated sufficiently by palliative care? The balance of the argument is in favour of saying “probably yes”, but it is too uneven across the country and would certainly need the sort of investment that would be necessary to set up system that would work for assisted dying. Above all, have doctors the freedom to administer pain relief that may shorten life? We need to know the answer to that question, because if, since Shipman, they have been prevented from taking such merciful measures, that is a classic example of hard cases making bad law. Doctors need to be able to humanely ease people on their last journey, and the country needs to know where the medical profession stands on that central matter to this debate.
Jess Asato (Lowestoft) (Lab)
After spending almost a decade working to protect women and children from harm, my focus with any piece of legislation is the potential it creates for abuse and coercion. While I would once have been supportive of the principle of assisted dying, and might wish that option for myself, I have been increasingly unable to reconcile my desire to safeguard the most vulnerable with putting that principle into practice. I am concerned that if the Bill passes we will see people coerced, either by an abuser or by societal expectation, into ending their own lives.
We do not want to think about it, but abuse surrounds us—2.3 million victims of domestic abuse in the last year. One in six older people experience abuse. The definition of coercive and controlling behaviour includes behaviour that repeatedly puts someone down, telling them they are worthless. Victims describe this as a “drip, drip” effect, and it goes unnoticed. Not just because we do not want to think about it, but because it is hard for professionals to identify it without proper training and with the lack of specialist support. There is no mandatory training for judges on coercive and controlling behaviour, nor is there effective training for medical professionals. In a 2019 survey, 50% of healthcare professionals said that they did not feel they had received adequate training to identify a victim of domestic abuse.
It is also hard for victims themselves to realise they are being coerced until they have got free. We know that older people, especially those who are disabled, are particularly susceptible to abuse by a family member and less likely to be able to escape their abusers. Those who are coerced are often isolated from friends and family. If people are not required to tell friends and family they are opting for assisted dying, who will raise the alarm? How would any concerns be reported? Will judges be able to investigate the police records of those around a person who has requested assisted dying—family or carers?
I will always remember a conversation I had with a hospital-based independent domestic violence adviser, who was called to the bed of a lady in her 80s in her last days living with cancer. The lady disclosed to the IDVA that she had been abused by her partner of 50 years, and said “Thank you. I have never told anyone before, but now I am finally free to die, and I am grateful for the release.”
We know from the Monckton-Smith report that a third of female suicides could be linked to domestic abuse, and from the Killed Women campaign that as many as 130 women each year could be murdered by a partner or relative but have their deaths are recorded as suicide or accident. Every week, we hear of family court judges failing to spot coercive and controlling behaviour. In one case, a judge found that a man repeatedly calling his partner worthless and telling her to die was not controlling conduct.
Where is the discretion of gender in the Bill? Out of 60 documented cases around the world of euthanasia and assisted dying for people with anorexia, 100% were women. I have come to the view that no Bill, however drafted, could adequately sift those with a genuine desire to end their own lives from those doing it for all the wrong reasons. For that reason, I will vote against.
Siân Berry (Brighton Pavilion) (Green)
I thank everyone who has spoken so far. This has been a very respectful debate, and I do not think any of us here have not shed tears at the messages that our constituents have sent us this week. I have received so many profoundly moving letters, postcards, emails and other messages sent to my office, and numerous people have told me about their personal experiences of loved ones facing really hard choices at the end of their lives. It is very moving. This is a big decision for us.
Well-informed public opinion shows that a very large majority of people want the option to choose assisted dying in the circumstances envisaged by the Bill, and this level of public support reflects the fact that the law, as it stands, too often forces people to endure horrific deaths. I have heard so many stories from constituents of the trauma and pain that they have witnessed in loved ones. Too many people are affected by the current law in truly painful ways, and too many of those who are able to do so now seek unregulated, distressing and unsafe alternatives, because there are no legal options. Those who wish to end their lives at the point when their suffering from a terminal illness becomes unbearable may act too soon. They may take their own lives, and do so before they reach a point at which they require assistance—in secret, leaving a legacy of shock and confusion, instead of peacefully planning an ending to their final few months. Some of the testimony that I have seen from family members and partners who face the consequences of these secret decisions are truly heartbreaking, because the current law also makes it a prosecutable offence for anyone to advise or assist someone in this horrible situation in any way, thus putting at risk anyone who even knows.
Several people have also raised concerns about coercion with me, and I have listened very hard. I aim to cast a vote today that will protect people better. The hon. Member for Rother Valley (Jake Richards) made, very well, the point that the Bill will be a clear improvement on the current law in respect of safeguards against potential coercion for terminally ill people, and we should all listen to that argument.
Like the hon. Member for Gower (Tonia Antoniazzi), I do have one constructive point to make. I think we should be discussing it during the Bill’s ensuing stages, which I hope we will vote for. It concerns the time limit. Other jurisdictions already allow for different time limits, or no time limits for terminally ill people, or a separate time limit for a number of well-known, specific neurological diseases, in which the period of terrible suffering can be much longer than six months.
Siân Berry
I am sorry, but I have no time.
Like many other Members, my colleagues and I have heard many concerns expressed about the availability of palliative care. I hope that we are seeing the start of a much more open conversation about the practical problems that people face at the end of their lives—something we are generally not comfortable with talking about in this country—and about the provision that we do not currently make for people in anything like an adequate way. We must do better and, like other countries, make sure that we see improvements in palliative care at the same time as making this change. While we do not have to choose between the Bill and better palliative care, we do have to give dying people the right to choose which ending is right for them, so please, please, vote for the Bill today.
Lizzi Collinge (Morecambe and Lunesdale) (Lab)
I thank Members on both sides of the House for the care and consideration that they have given to this debate. If the Bill is given a Second Reading today, there will be further lengthy scrutiny, but I want to address what I think is a bit of a misconception about it, namely the ideas that patients taking the decision to die and doctors assessing capacity, coercion and consent are somehow new. We have heard the word “Rubicon”. There seems to be an idea that this is a completely new sort of decision, and that this is something unusual and outlying in medical practice. I want to challenge that, because, actually, patients, doctors and indeed High Court judges are already making life-and-death decisions every day. As my hon. Friend the Member for Bury St Edmunds and Stowmarket (Peter Prinsley) said, in this case we are actually talking about death-or-death decisions.
Let us take the example of withdrawal of treatment. One of my close family members who would not be covered by the Bill’s eligibility criteria starved herself to death through withdrawal of treatment. She had been unwell for many decades with a condition that would have eventually killed her. At one point she became unable to swallow. For many years she had relied on artificial nutrition, and when the type of artificial nutrition she needed changed to a more invasive process, she said, “Enough’s enough.” As a mentally competent adult under the current law, she was able to take that decision. People are already legally able to die early through withdrawal of treatment. I emphasise that she would not have been eligible under the criteria of the Bill, and I have no idea what she would have chosen if she had had a choice, but the fact remains that her capacity was assessed by a doctor and she was allowed under the current law to die early.
The BMA has told us that it regularly assesses for capacity, coercion and consent in, for example, abortion care and—as in the example of my relative—dying through withdrawal of treatment. The Bill and the safeguards it would put in place would give a stronger framework of protection than the existing law.
Under the Bill, two doctors would have to test for capacity, coercion and consent. That would have to be reviewed by a High Court judge and pauses for reflection are built into the process. If it does get to the point of an assisted death, the patient themselves must administer the approved substance.
Let us be clear about who the Bill is for. The eligibility criteria are extremely narrow—some have argued that they are too narrow. The Bill is for mentally competent adults who are nearing the end of their lives. They are dying, and they are dying soon.
Many people with a terminal illness will have a perfectly ordinary death managed perfectly well by palliative care. But we have heard in recent weeks—over many years, in fact—about the people who do need the Bill: the people for whom even the best palliative care simply does not work; those for whom merely the option of an assisted death gives them peace and comfort and a chance to enjoy the rest of their lives without fearing the manner of their death. With the safeguards contained in the Bill, who are we to deny them that peace? Who are we to decide what they must bear as they die?
We have the power through a robust legislative process to prevent human suffering. Good palliative care and assisted dying are not at odds. They are not in conflict. They both aim for the same thing: a good death, surrounded by people you love, with minimal pain and without fear. Today, we can vote for that in the sure knowledge that if the Bill passes its Second Reading, it will undergo further intense scrutiny to ensure that it is a good law that works as it is intended to do. This is the start of a legislative process, not the end. I urge colleagues across the House to vote yes.
Robert Jenrick (Newark) (Con)
I want to talk about two aspects of the Bill: what it could have done in terms of safeguards but does not; and what it does not do but could never resolve. On the first point, the safeguards—in particular the legal and judicial ones—are grossly inadequate. Bad law on trivial things is bad enough—I have seen a lot of that in my time in the House—but bad law on matters of life and death is unforgivable.
We have spoken about the role of doctors; let us think about the role of judges. The test to be applied is a low one: the civil law threshold, which is a balance of probabilities. This means that a judge could see real risk of coercion and still sign off an individual for assisted death. If the threshold of 50% or more was not reached, the judge would sign off the individual. The next of kin is not informed. There is no right of appeal, which is extremely unusual in English law, and the process is conducted in secrecy. It could be done on papers alone. Transparency is critical to the law. It is one of the oldest principles in our English legal system. As Jeremy Bentham said more than a hundred years ago, evil can arise in secrecy, and publicity is at the heart of justice. This is not a transparent process and that leaves it woefully open to abuse.
Secondly, all of us in this House want to believe that the laws that we pass are final, full stop, the end. That is not the case. I worry—in fact, I am certain—that as night follows day this law, if passed, will change; not as a result of the individuals in this Chamber or the other place, but as a result of judges in other places. We have seen that time and again. It may be on either side of the debate, but it will happen. If passed, the Act will be subject to activist judges in Strasbourg. They will change it fundamentally and we have to be prepared for that. I do not want to see that happen.
My last point is not about how we can improve the Bill; it is about something that we can never resolve as a House. The Bill is not so much a slippery slope as a cliff edge. When we walk out of this Chamber, or out of the gates of this building tonight, we will, in a way, walk into a different country if the Bill passes. There will be different conversations around kitchen tables. There will be different conversations had by couples lying in bed at night, or on quiet country walks where people talk about difficult things. They will not be conversations that make our country a better place.
More important, there will be people who do not speak about these things at all. There will be imperceptible changes in behaviours. There will be the grandmother who worries about her grandchildren’s inheritance if she does not end her life. There will be the widow who relies on the kindness of strangers who worries—it preys on her conscience. There will be people—we all know them in our lives—who are shy, who have low self-esteem, who have demons within them. I know those people. I can see them in my mind’s eye. They are often poor. They are vulnerable. They are the weakest in our society. And they look to us, to Parliament, to represent them, to support them, to protect them. In their interests, I am going to vote against the Bill today. Sometimes we must fetter our freedoms. We the competent, the capable, the informed sometimes must put the most vulnerable in society first.
Florence Eshalomi (Vauxhall and Camberwell Green) (Lab/Co-op)
I start by commending the hon. Member for Runnymede and Weybridge (Dr Spencer) for outlining some of the complications with the legislation as it stands. I also put on record my admiration for my right hon. Friend the Member for Birmingham Ladywood (Shabana Mahmood), who has, in my opinion, been disgracefully singled out in comparison with others for her view of the Bill.
The Bill could be the most consequential piece of legislation that has been considered during my time in this House, and is at the heart of the matter of why I came into politics. Many Members have spoken about coercion and about providing a voice for people who often do not have one. It is that principle which has guided my decision to oppose the Bill. I know there are sincerely held beliefs on both sides of the debate. They can seem completely at odds with each other, but it is my firm view that everyone speaking today shares the same goal: a more compassionate society in which everyone can live and die with dignity. But true compassion should have equality at its heart. It is for this reason that I cannot support the proposals as they stand.
We must recognise the hard truth that health inequalities are wide and persistent. We know that black and minority ethnic disabled people have far worse health outcomes than the national average. I saw that at first hand when caring for my mother, who suffered with sickle cell anaemia. As a teenager, I would be by her side when she was in excruciating pain, explaining to a doctor who would not believe her when she told him that she needed life-saving medication. Sadly, that is still the reality today. I am reminded of the death of Evan Smith on 25 April at North Middlesex university hospital. Evan suffered from sickle cell too. He was in so much pain that he had to ring 999 from his hospital bed, because he was denied oxygen and basic care by the doctors. Put simply, we should be helping people to live comfortable, pain-free lives on their own terms before we think about making it easier for them to die.
Colleagues will be aware of clause 15 of the Bill, which outlines the provision for signing by proxy. I am worried that this could create issues for vulnerable groups who are more prone to coercion by family members. As many Members have said, assessing beyond doubt whether someone has been put under pressure or coerced would be difficult. If this legislation is passed, even the legal experts seem to be in disagreement on this, so I do not believe that there has been enough scrutiny. The risk of coercion will be highest for some of the most disadvantaged people in our communities. As a society, we risk pushing people to seek an early death. I cannot, in good conscience, support this.
My late mother lived with chronic illness all her life, and I knew that one day her pain would be too unbearable for her, but she did not let that limit her. She wanted to live. I do not believe that the Bill would protect the wishes of people in her situation, because freedom in death is possible only if we have had freedom in life. How can we possibly be satisfied that this Bill will deliver equality and freedom in death when we do not yet have it in life?
Madam Deputy Speaker (Ms Nusrat Ghani)
If colleagues continue to work with me, I will try to get in as many people as possible.
Liz Saville Roberts (Dwyfor Meirionnydd) (PC)
Diolch yn fawr iawn, Dirprwy Llefarydd.
I think the starting point for many of us today is how to resolve the dilemma of what we want for ourselves against the fear of enabling potentially terrible consequences for others. There is a rational fear of the reality of coercion, what drives decisions within families and what individuals feel is best for their family. There is a rational fear of how institutional pressures, lack of resources and, appallingly, the culture in the NHS might ramp up the convenience of death as an affordable option. This is not a new fear. The hon. Member for York Central (Rachael Maskell) mentioned Baroness Neuberger’s review of the Liverpool care pathway, which said:
“In order that everyone dying in the acute sector can do so with dignity, the present situation has to change.”
That was in 2013. We know, in the aftermath of covid, how little has changed.
Death as an institutional convenience has never been, and never will be, right. It is our duty to demand good palliative care and address the institutional and resource barriers to it, but that is not a licence to sidestep today’s moral question. The people of England and Wales now expect us as legislators to provide an answer in principle. It is our duty to provide that answer not only in principle, but in process. With that in mind, I will support the Bill on Second Reading if there is a guarantee of sufficient scrutiny to stitch together a complete garment out of what is presently threads and patches that could, as we have heard, be rent asunder in court. If Committee scrutiny cannot make the Bill robust, I will reconsider my support in future votes. Surely this House can ensure that there is both cross-party and small-party representation on the Committee, rather than conventional party proportionality—of course, today we have a free vote.
The implications for Wales, where health is devolved, cry out for proper consideration. I support the hon. Member for Gower (Tonia Antoniazzi) in her concerns about the Sewel convention and the need for a legislative consent motion in the Senedd. These concerns are equally true not just for Wales but for remote and deprived communities where ill and dying people already suffer disproportionately inadequate health services.
To close, I credit Iola Dorkins of Morfa Nefyn whom I have known for over 30 years and who is presently dying of motor neurone disease. She wears a brace that her husband has adapted to make more comfortable. Today, she is on respite in a hospice in Holyhead, which is 50 miles away from her home. That is the reality of people’s lives as things stand. We need a change in the law.
Dr Simon Opher (Stroud) (Lab)
I am one of those medical practitioners, sometimes known as a doctor. I have been a GP for 30 years, and every year I look after four or five cases related to palliative and terminal care, so I have a lot of experience in this area.
I would like to make some quick observations. First, a lot of patients who are dying of cancer ask whether we can curtail their life and finish it a bit early. That is a very common thing that they ask. I have had two patients go to Dignitas on their own, without family members, because the family members were fearful that they would be arrested on their return. We have been discussing giving a double dose of morphine. I think that almost all doctors in terminal care have probably done this—doubled the dose of morphine knowing that it might curtail the patient’s life. That is a big fudge. It puts me in a very vulnerable position. We need to resolve that.
I think we are getting a bit confused between palliative care and assisted dying. A lot of people who receive excellent palliative care still request assisted dying. They are not mutually exclusive. I totally support what everyone is saying about developing palliative care, because that is really important, but that should not go instead of assisted dying. The things go together. Assisted dying is one of our tools in palliative care, as I see it going into the future.
I have a couple of points about coercion, which people like me need to assess. If someone says that they feel like a burden, that is immediately not a good reason to approve assisted dying. Doctors are trained in assessing capacity, as has been said, but we are also trained in trying to find out the reasons someone wants to end their life. I think it is judging doctors harshly to say that they will not spot coercion. Interestingly, the only change in Australia was that they found that the judiciary review did not add much to the process. Otherwise, there does not seem to be a slippery slope, as long as the legislation is carefully done.
Joe Robertson (Isle of Wight East) (Con)
The hon. Member opened by referring to himself as a doctor and medical practitioner. Perhaps he could help with the difficulty I have with the Bill, which I would dearly like to support. There are provisions in it that allow the Secretary of State to bring forward regulations so that the independent doctor can be an alternative medical practitioner. There is also a section that makes the court look like an optional process, so I do worry that there are not protections in the Bill for two doctors. Perhaps he could help with that.
Dr Opher
I do think it is right for this Bill to require two doctors and a judiciary review, because this is new legislation and we must be sure that it is safe. These safeguards are incredibly important.
I will finish simply by saying that having been a doctor all my life, I have tried to empower patients to make their own decisions over their healthcare, and this is a great opportunity to do that. I had one patient who had a terminal diagnosis and hanged himself. The family were devastated. It was a horrible way to die. I felt that we had failed as a medical profession. Let us not fail as a Government, a judiciary and the Houses of Parliament. Please support the Bill.
Dr Luke Evans (Hinckley and Bosworth) (Con)
How do you want to die? How do you picture your own death? It is a question we rarely ask ourselves, but one that every one of us will face. For me, I hope it is with peace, surrounded by loved ones, free of pain and content with a life well lived. That is the gold standard. Good palliative care strives to make that ideal a reality.
Let me state unequivocally: we need to support palliative care. However, today’s debate is not about whether we support palliative care, but about what happens when we cannot provide a solution. What happens when palliative care does not or cannot work? The truth is that palliative care has limits. Let us consider the cases that keep doctors and surgeons awake up at night—the likes of the inoperable neck cancer, eroding away into the carotid artery. It is a literal bloody time bomb, and no one knows when it will go off. What is modern medicine’s answer to that? Keep dark towels nearby for the blood, and counsel a partner or family member on what it is like to find someone bleeding out. There is no cure, and no respite. What would you do?
Currently, for such patients we can offer no agency over their end; no alternative to that terrifying death. Can we truly say that that is compassionate? Should we not even offer those facing such suffering at least the chance of dignity in their death? That is what the Bill stands for. To reject it on Second Reading is not just to vote against assisted dying but to silence the debate for another decade and to say that the status quo is acceptable, and it is fine for those who can afford it to fly to another country to end their suffering while others are left here without recourse. I cannot accept that. What is this House for if not to empower people, and to give them the tools to shape their lives and, yes, their deaths? Today, we have the chance to put compassion into action—to offer choice to those who are facing the ultimate suffering.
I hugely respect Members who take a different view. I simply and gently say to them that there are consequences, too. Those intractable cases will still be there with no solution, no choice in this country and no resolution to their suffering. To those who understandably are a little unsure, I say that if they have doubts about safeguards or the implementation—I agree that some are valid—they should let the debate continue. For some Members it will a bridge too far; if necessary they should reject the Bill on Third Reading, but to stop it now is to stop the conversation entirely, take the choice off the table and remove a dying person’s agency. When all is considered, I ask again: how do you want to die?
Mr James Frith (Bury North) (Lab)
The Bill asks us to make a profound and irreversible decision on the principles of our health service and end of life care. With end of life care funded too often on a shoestring for many, the Bill takes our focus to ending life, not improving living as life draws to a close with terminal illness. I believe it poses significant risks. Our wider societal and cultural norms will be changed forever. Those who refuse to acknowledge that prospect now do so with the benefit of things as they are now. My point is that this concept changes immediately today if this Bill is passed.
The safeguards may sound rigorous on paper, but the strained state of our NHS means that many patients do not have a consistent relationship with a named doctor. We are attributed to health centres nowadays, not named doctors. Someone’s consideration of this decision could depend on which doctor they see—one who raises assisted dying as an option, versus one who refuses. That is a deeply troubling prospect. The ideation of assisted dying will become a ballot. We know our GPs have a range of views on assisted dying, so we cannot deny that who someone ends up seeing with their terminal illness might be how they end up. That could be at the doctor’s, possibly in the presence of a loved one who is under strain and in need of respite themselves, and the first suggestion is the beginning of a journey towards, yes, assisted dying. That is before we consider the forces of marketing and commercialisation, and the industry that will spring up if the Bill proceeds and is sewn into our NHS.
Neil O'Brien (Harborough, Oadby and Wigston) (Con)
Will the hon. Gentleman give way?
Mr Frith
No, I will not.
It is possible that we cannot imagine being the victim of coercion, or that as MPs our agency is so baked in to our experiences of living, that we cannot envisage a scenario where those who already claim to feel unseen are directed towards meeting their end sooner than it otherwise might have been. Our casework from constituents is already full of people struggling to access the rights that we have enshrined in law—access to justice, health, education support, the disaster in our special educational needs system—and of victims often of state neglect or state coercion, and the failure of safeguards that were once supported on paper and passed into law.
Disability rights groups and advocates have raised their voices, wanting us to talk about the dangers of normalising assisted dying. For many the Bill represents not a choice but a principle shift that undermines the value we place on protecting the vulnerable. It falls to us as the strongest to stand up and vote against the Bill. Passing the Bill today will not improve palliative and hospice care. My belief is that it will forfeit it. The end of life is complicated; end of life care often is not complicated enough. On reflection, my mother-in-law deserved a frank, trusted conversation about the risk of secondary illnesses and amputation that would follow with the automatic cancer treatment that she was given in her final months of life. We should expect more agility from our NHS, and while dying is the ultimate binary experience, end of life care should be more sophisticated and more personalised. Shortening those expectations with a system that endorses assisted dying would forfeit that too.
Finally, as legislators our responsibility is to protect the most vulnerable and consider all eventualities. We disagree on slippery slope arguments, but if the Bill proceeds it will be a moment of no return, and that is why I am not prepared to support it.
Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)
It is a privilege to speak in this debate, and the way in which the House has conducted itself on both sides of the argument is a credit to this place.
I stand here not only as a medical practitioner who worked as a surgeon for about a decade, but also as a healthcare barrister, so I have looked at the debate from both sides of the argument. I have been deeply moved by some of the stories I have heard about patients who are facing a terminal illness. I am also instructed by my own experiences—my personal experiences of my relatives, and of those patients whom I failed. I failed because I did not give them the good death that they deserved, despite the very best efforts of palliative care.
It is true that we can improve the palliative care offering in this country, but it is not a binary choice. It is not a choice of palliative care or assisted dying; it is a choice about someone having an option over how they want autonomy over their body at the end of their life. I understand the concerns raised in this House—I genuinely do—but this is not the point to cancel the debate. This is the point to engage in the debate. This is the point at which we move it forward, so that people can contribute to it in Committee and say how things can be improved, and so that we can work together to make a societal change, improve our society and support those who want that ultimate choice in those last days.
Paula Barker (Liverpool Wavertree) (Lab)
I am honoured to rise to lend my support to the Bill, and I am proud to support my hon. Friend the Member for Spen Valley (Kim Leadbeater) as one of the Bill’s co-sponsors.
Data shows that in my city of Liverpool 74% of people are in favour of assisted dying. I have been privileged to correspond with and meet so many of my constituents who have shared with me their views and personal stories, spanning both sides of this important debate, and I thank them all. As we have heard today, there are strongly held beliefs on both sides of the House. I absolutely respect those with views that differ from my own, and hope that they respect my views, even if we disagree.
Since long before I entered this place, I have been an advocate of assisted dying, with the appropriate safeguards, to alleviate unnecessary suffering. My own mum cared for my dad during his cruel battle with cancer. Sadly, not even the best palliative care could provide him with a good death—and I do believe that there is such a thing as a good death. At its core, the Bill is sensible, safe and compassionate. But above all else it places human dignity at its heart.
In respect of palliative care, the Bill is not an either/or. Along with many other campaigners for assisted dying, I fully support improving palliative care. It has been proven that end of life care has improved in several countries because of assisted dying reform. I hope that, if the Bill passes, the UK will also belong on that list. Palliative experts, including those opposed to law change, admit that some people’s suffering is beyond the reach of even the best palliative care.
I do not believe that if the Bill finally becomes law, it will create a slippery slope. As the right hon. Member for Sutton Coldfield (Mr Mitchell) eloquently said, terminally ill adults in Oregon have had a legal option for assisted dying for more than 25 years, and not once has it been expanded to include other groups.
Paula Barker
No. I am sorry, but I will not.
Every year, around 650 terminally ill people take their own lives, and countless others who are more affluent make the choice of the long, arduous journey to Switzerland, all without any protections in place. I do not want choice to be available only to those who can afford to pay. That is not just or equitable.
Finally, just like with many other private Members’ Bills that have gone before and looked to bring about social reform—such as those on abortion, divorce and the decriminalisation of homosexuality—this is an historic moment and an opportunity, if taken, to give real dignity to those who have reached the end of life and want a choice, while also respecting the views of those who do not want to take that choice.
Mr Peter Bedford (Mid Leicestershire) (Con)
This is a humbling subject to speak about. I put on the record my thanks to the hon. Member for Spen Valley (Kim Leadbeater) for bringing this important issue before the House.
I have witnessed at first hand the cruelty that a terminal diagnosis brings. As the son of a single mother, my grandparents were like second parents to me. Each struggled with their own incurable cancer diagnosis. At Christmas dinner in 2019, my nan, who could no longer eat and was clearly in a great deal of pain, turned to me and said she was “ready to go”. “It’s time now,” she added. That night, I reflected on how, as a society, we shy away from discussing death. We park it away and prioritise more immediate, palatable subjects, but it impacts members of our communities day in, day out— from terminal diagnoses to medical treatment and, ultimately, their final days. This really matters to me.
In my maiden speech, I pledged to campaign for people to have greater control in their final days and to afford those with terminal diagnoses the right to end their lives in dignity. This is not an argument against palliative care—some wonderful Macmillan nurses made my nan’s final months as comfortable as possible, and I absolutely agree with the many Members who have raised the issue today that we need to do more to support our palliative care sector—but good palliative care and a dignified end of life are not mutually exclusive.
Nor do I seek to control those who have strong religious beliefs. Those who believe that only God can take life have the complete freedom to wait for that moment. But that is their choice. [Interruption.] I am not taking any interventions. Many have legitimate concerns about safeguarding. Of course, the most vulnerable should not be coerced into making a decision. However, this Bill introduces specific offences for this. Indeed, combined with sign-off by two independent doctors, judicial oversight and a period of reflection, this means there would be robust mechanisms to protect the most vulnerable.
Mr Bedford
I am not giving way.
These details are vital, but so is our humanity. Being with my nan in the warmth of her home, as she was surrounded by her loving family after months of excruciating pain and no hope, I knew there and then that she should be able to choose her time to say goodbye to her family. Like so many others, she had had enough. An understanding and compassionate society should not stand in the way of her right to choose.
Members can see the profound impact this has had on me and my belief in the importance of end of life care and choice. It has enabled me to understand a crucial distinction at the heart of this emotive debate. This is not about shortening life; it is about shortening death.
I urge those Members who support the principle of this Bill, but who are concerned about the specifics of the safeguards, to support it on Second Reading. Further debate can be had in Committee, if hon. Members feel that changes are required. This Bill provides the choice to shorten death, which is a right that an empathetic and considerate society should afford its citizens.
Dawn Butler (Brent East) (Lab)
I thank my hon. Friend the Member for Spen Valley (Kim Leadbeater) for how this debate has been conducted.
Yesterday, we buried Tony Warr, a GMB officer and a really good friend. He was diagnosed with prostate cancer. He beat it once, but it took him in the end.
Earlier this week, the cancer community lost Nina Lopes. She had stage 4 triple-negative breast cancer and was given six months to live in 2018. Six months became six years, and she taught us how to dance through her @frodayss account.
As we have heard, it is not an exact science when someone is given a prognosis of six months to live. As a patron of Black Women Rising, a cancer charity that supports black and minoritised women through their cancer journey, someone who had been given six months to live recently told me, “I have had a good life, and I am ready to go.” Six weeks later, they are now fighting to live. The thing is, if we had focused only on the fact that she was ready to go and wanted to die, it would have all been very different.
As we have heard today, there are parts of the law that need changing around coercion, and around doctors being able to help people with their end of life treatment. However, I believe those safeguards and discussions can be separated from assisted dying and assisted suicide. I do not see why we need to have a combined discussion.
Everybody has the right to die with dignity and compassion. Whether or not this Bill progresses today, I hope those conversations will continue. After all, we are legislators, and we have the ability to do that. Eighty per cent of my constituents are against this legislation, and I will be voting against it.
Christine Jardine (Edinburgh West) (LD)
It is an honour to follow the hon. Member for Brent East (Dawn Butler). I also pay tribute to the hon. Member for Spen Valley (Kim Leadbeater). The spirit in which this debate has been conducted today is a tribute to her leadership on this issue.
This debate has been harrowing for all of us. However, to us falls the responsibility and the privilege of making this decision on behalf of those who go through experiences so harrowing that I do not think any of us can imagine them, even though we have heard their tales—I know that I cannot.
Until recently, I put it to the back of my mind that I have actually been in the situation of waiting to find out whether I would have a terminal diagnosis. I was lucky, as it went the other way. I do not know what I would have wanted but, as I waited, I thought about all the things I wanted to do and might be denied. People with a terminal diagnosis think about what they planned to do with their life, such as seeing their children and grandchildren grow and marry.
When we came here today, we were all aware of that, and we thought seriously about the implications and the need for palliative care, but it is not our job to say that we should not do this because palliative care needs to be improved and because the NHS cannot cope. Our job is to say that we need to improve palliative care so that the NHS can cope, and so that we can do this.
On the safeguards that are needed and included in the Bill, I believe they are there. For those with religious beliefs that mean they cannot countenance the Bill, I understand and respect their concerns, but I would not be standing here if I was not convinced that in this Bill we have the best opportunity to provide a choice safeguarded by medical and legal professionals and protected from that slippery slope. It happened in Canada because they did not have “terminal diagnosis” in the definition of the Bill from the beginning, but we do. If we vote the Bill through, it will go on to have the further and tougher levels of scrutiny that every piece of legislation in this place and the other place must go through. I respect everyone’s concerns and beliefs, but I also ask them, and all hon. Members, to respect those who have already been denied so much in their lives—those things I said they might want that they might be denied.
We have a choice today: we can lead a national conversation that examines the issue before all of us, dissect the Bill line by line and check its effectiveness, or we can vote to close it down today, and then the country and the families who are suffering will be denied the light they want to see thrown on the issue and the voice they want their loved ones or perhaps themselves to have.
Many of us have watched loved ones die difficult deaths, and we have over the past few weeks, months and years in politics heard harrowing tales and spoken to families who have had no choice but to watch their loved ones pass in the most harrowing of circumstances, or make an expensive—for many, prohibitively expensive—trip to Dignitas alone. I cannot help about those things they have been denied by the cruellest of fates, but surely we cannot deny them choice at end of life.
Catherine Fookes (Monmouthshire) (Lab)
I thank my hon. Friend the Member for Spen Valley (Kim Leadbeater) for the incredibly sensitive and thoughtful way she is conducting the passage of the Bill, consulting widely with terminally ill people and their families, medical staff, lawyers, faith leaders and those on both sides of the debate.
I have two very personal stories about why I support a change in the law. Last year, my dad’s health took a turn very much for the worse. He had sepsis, kidney failure and heart disease and had lived with Addison’s disease for almost 50 years. He was given the dreaded news that he only had a few months left to live. I would not have wished his last few weeks upon anyone. He was in agony and suffering—his breathing was difficult and he was in such pain. I struggled to see him suffer so much, but the nurses, doctors, carers and my incredible step-mum were all without fault and, thankfully, his palliative care was excellent. He was able to die at home with me, my sister and my step-mum by his side. Seeing him suffer so terribly convinced me that we need a change in the law so that people who are terminally ill have a choice.
My second story is from Australia where my brother lives. My wonderful sister-in-law Kelly sadly died of liver cancer that developed into bone cancer. She had a fractured left arm, pelvis and sacrum, and had cancer in her spine. At 54, Kelly was far too young to die. Her cancer was particularly painful and unforgiving. As she lived in Victoria, she was able to register for assisted dying. For her, it was incredibly comforting to know that if, and only if, she needed to, she could stop the suffering. She did not need it in the end, but she did have the option. In her darkest days—her fearful days—that brought her and my brother incredible peace of mind.
I heard similar stories of suffering in the hundreds of emails sent to me by constituents over the course of the past few months. People want and deserve access to both the best palliative care and a choice if they are terminally ill. The protections and evidence underpinning the Bill are strong. I was there for my dad’s final week when he was in so much pain, and I was there right at the end holding his hand. What a privilege to be with him at the end and to see him through. In memory of my dad and of Kelly, I support the Bill and urge all those across the House to support it, too.
Jim Allister (North Antrim) (TUV)
This is not an easy subject, nor should it be, because this is a matter of the taking of human life—the taking of human life, sanctioned by the state.
Our nation, through many wonderful charities and through Government, reaches out compassionately to those who are threatening suicide. They are urged to use the services of the Samaritans and to get all the help they can. I cannot square the circle where the state would then move to itself sanction suicide—indeed, to facilitate and, in fact, to promote suicide. And to do that in respect of those who are intrinsically the most vulnerable in our society. Anyone who gets a diagnosis of terminal illness is, by reason of that, obviously vulnerable. Many, in consequence, suffer depression and other difficulties, so they are among the most vulnerable in our society. Being vulnerable, they are among those most liable to fall under the foul influence of coercion.
Coercion comes in many forms. Anyone who has listened to domestic abuse cases will know that it can be very insidious, invasive and persuasive, because the coercer has the constant ear of those they wish to coerce. Add into that mix the fact that that person might feel a burden. We have all heard old people say, “I am a burden on society. I am a burden on my family.” Even when they are told, “No, caring for you is not a chore, but a privilege,” they still think they are a burden. If in that background—that matrix—there is still the pernicious influence of coercion, then the thought that people reach a reasoned, considered, independent opinion is a fallacy.
It is those people that this House should be protecting above all, but this Bill does not protect people in that situation. Oh, we are told, “two doctors and a judge”. The judge does not have to, but he might decide to hold Zoom call with the applicant, but he is not to know if sitting in the corner of the room, out of camera shot, is the coercer. Where is the protection in that?
I say to the House that this issue cuts to the very quick of our fundamental duty to be the protectors of the most vulnerable. There is no part of the state’s function to be promoting or assisting the end of life for people who could be in that condition, and we will never know how many are in that condition, so I cannot and will not vote for the Bill.
Ruth Jones (Newport West and Islwyn) (Lab)
It is an honour and a privilege to speak in the debate and to follow so many hon. Members who have made such powerful contributions. I thank my hon. Friend the Member for Spen Valley (Kim Leadbeater)—no longer in her place—for all her work on the Bill; colleagues from across the House who have worked together so collegiately; my constituents who have written to me in their hundreds; and the experts who shared their views with us.
Everybody in the Chamber wants a good death, but at the moment palliative care across the UK is chronically underfunded, mostly paid for with money raised by charities and a postcode lottery. I pay tribute to all the hospices that are working around the clock and doing an amazing job on very stringent budgets, especially St David’s Hospice and the Hospice of the Valleys, which do amazing work. However, we have to remember that although we are talking about people with very powerful stories—some of whom are here today—we legislate for all, and that means ensuring that our legislation is safe and future-proofed.
I have concerns about the Bill on issues such as presuming consent. My worry is that if the door is opened with this Bill, it will then be widened, as it has been in places such as the Netherlands, Belgium and Canada. These things will happen.
More than 65 private Member’s Bills were passed in the last Parliament. Not one of them had more than one sitting in Committee, where the average length of debate was 35 minutes; and just over a quarter had any amendments made to them at all. My hon. Friend the hon. Member for Spen Valley has said that she is willing to extend it, which I welcome; I will be pressing her on that to ensure it is safe. If the House votes to carry the Bill forward—I will be voting against it—scrutiny will be crucial at all points of its passage.
We have talked about terminal illness today, but intractable pain is something that people live with every day. That is another issue. In my 30 years as a physiotherapist, I have seen good deaths and bad deaths. We all want to ensure that we get the best for our constituents, so we need to ensure that end of life care is sorted. This has been a good debate, because we have talked—I have certainly talked to my family. My lovely mum of 89, who is disabled, housebound and widowed, said, “It’s all very well talking about assisted dying, but we need to talk about assisted living as well, because that is most important.” Quality of life is crucial here.
We need to ensure that we are here to legislate for all, which is why I will vote against the Bill today. I am grateful for the opportunity to explain.
Saqib Bhatti (Meriden and Solihull East) (Con)
I acknowledge the importance of this debate and thank the hon. Member for Spen Valley (Kim Leadbeater) for bringing it forward. Although I will be voting against the Bill, I still think this is an important discussion to have, not least because many of my constituents believe that it is the right thing to do. Of course, there are also many who feel that it is not the right thing to do. We have shown the very best of what Parliament can do here today.
I came to my conclusion not because of some sort of zealotry or evangelism. I completely acknowledge that there are people who go through very difficult situations where they lose their normal faculties and are in immense pain. However, we need to be clear about what we are discussing today: we are talking about wholesale change to how the state deals with death. That is really important. The Bill would place people, society and the medical profession in a number of scenarios, and put at great risk some of our most vulnerable people. That is part of the reason I will vote against it today.
The slippery slope arguments are valid in terms of the risk the legislation produces. We are talking about medicalising death, placing an undue burden on our health professionals and legitimising a role for the state in the death process.
Saqib Bhatti
I will not give way at this moment.
I have yet to be convinced that the legislation has sufficient safeguards in place. On slippery slopes, take Canada as an example: there, someone does not even have to have a terminal or fatal illness now; mental illness will be an acceptable reason for assisted suicide in 2027. Even though it did not start that way in Canada, that Pandora’s box has clearly been opened, and we risk embarking on that route today. The hon. Member for Spen Valley has said that there is almost a guarantee that this situation will not change, but she cannot guarantee that future Parliaments will not change the goalposts on this matter. The slippery slope argument is about exactly that: when we embark on this journey, that is where we may end up, as the goalposts start to move.
I am conscious of time, so I will end my comments shortly. We have had lots of conversation about the private Members’ Bills process, and the hon. Lady cannot guarantee that there will be sufficient scrutiny and safeguards. We have not had enough impact assessments or public consultation, and there has been very limited time to look at this piece of legislation. We are at serious risk of passing something that will do immense harm. I worry that in the future we will look back at this, after there has been abuse or coercion of some of the most vulnerable people, and we will come back to the House to discuss the damage that we have caused today.
Several hon. Members rose—
Kim Leadbeater
On a point of order, Mr Speaker. I seek your guidance on correcting the record. I said in my speech that I have consulted with the highest levels of the judiciary and the medical profession. I have received correspondence from the Judicial Office and wish to clarify my earlier comments. Although I have spoken to lawyers and judges, I should not have implied that the serving judiciary have in some way indicated their agreement with the Bill; they have not. The serving judiciary have been very clear that they have made no public comments about the Bill one way or the other. I apologise if I implied anything to the contrary.
Rosie Wrighting (Kettering) (Lab)
I rise to support this incredibly important Bill. Like many hon. Members, I have been contacted by hundreds of constituents on both sides of the debate. I have been moved by their personal stories, which bring home the impact that this legislation could have on them and their families, and I want to put on record my thanks to everyone who has contacted me. I fundamentally believe in the right to choose at the end of life, and that is what the Bill is about: giving dying people a choice on how they die. Anyone who does not want an assisted death can choose not to have one, and anyone who wants the reassurance of an option has it.
My constituents’ stories and the stories shared by hon. Members today have shown me that it is truly unacceptable to maintain the status quo. Without a change in the law, terminally ill people will continue to face the end of their lives with a very limited range of options. Some will travel abroad for help to die, but that is only an option for those with the financial means to do so. Choice at end of life should not be an option only for those who are financially stable or desperate. Death should be peaceful and pain-free, and the Bill gives us the opportunity to make that a reality. There is no doubt in my mind that the Bill, so carefully considered by my hon. Friend the Member for Spen Valley (Kim Leadbeater), would be an improvement for the lives and liberties of my constituents and those across the UK who are terminally ill. I urge Members to give it a Second Reading today.
I want to end with the words of one of my constituents, who wrote:
“We have some amazing care givers in this country who provide the most compassionate care in the most difficult of circumstances & that gives great comfort. But I feel no-one should be forced to know how the book ends when they are only part way through it without having the choice of putting it down and choosing one with a better ending.”
Vikki Slade (Mid Dorset and North Poole) (LD)
We do not need to choose between palliative care and supporting those who want to make their deaths better. It is so fantastic to hear Members from every part of the Chamber with a shared commitment to funding more palliative care, and I hope that the Secretary of State and his team hear that and will go further, knowing that they have our support in investing more. But until they do, we cannot condemn those who are at the end of life to terror, loneliness and being forced into horrible circumstances.
I have been concerned by some of the comments in the debate, so I re-read the Bill as I sat here. It has been suggested that mental health conditions would be included, but they would not—under clause 2(3). It was also suggested that people might not be offered surgery or other treatment, but they must, under clause 4(4). It is also worth noting the suggestion that a person being coerced could be protected by disclosing to the very family that might be coercing them. The provision for a witness in clause 5(2)(c)(ii) and the period of reflection would allow the independent person to be present at the appropriate time.
I have already shared publicly my own family’s death journeys—and I wear them on my jacket—but today is not about them. Today is about all those people who need this Bill. Last night I read the book “Die Smiling”, about Nigel’s journey to Dignitas. It ends with his final journey and a Facebook post, prepared before he made that agonising 20-hour journey to Switzerland with his wife and children. It moved me to tears. However, most people cannot afford that option. Most do not want to put their families at risk of prosecution; they want death on their own terms.
Gary lives in my constituency, and he asked me to tell the House his story of dying with liver cancer. He knows that the end stages will be brutal, and he wants to decide when enough is enough. He me:
“Death does not worry me at all. Dying a slow death with my dignity stripped away terrifies me. So when my time is right I will kill myself—alone and afraid. My sick dog will not have to die alone and afraid, but I am forced to do so. I want to die on my terms. How can this be right?”
Tracie, who was a palliative care nurse, told me:
“I’ve witnessed many end of life patients and I cannot say hand on heart that many of those patients had a peaceful death. I left palliative nursing as the emotional trauma became too much. There are neither the range of medication or symptom relief treatments available for many of the harrowing things people are forced to go through in their last days and weeks of their life.”
This Bill is about compassion and humanity, and we must listen to the voices of dying people.
Dr Kieran Mullan (Bexhill and Battle) (Con)
Today the focus is rightly on Back Benchers, so I will limit my remarks and—mindful of your advice on time, Mr Speaker—I will not be taking any interventions.
It is not for me to make the case for His Majesty’s Opposition, because we have not taken a collective view, and, like many other Members, I have struggled greatly with this decision. I do not believe there is a perfect choice to be made today, just different versions of imperfection, and my time working as a doctor in A&E has made me sympathetic to both sides of the argument. I have seen the pain in the eyes of relatives who want to ease the suffering of their dying loved ones, but I have also held the hand of frail elderly people, forgotten by their families, feeling themselves to be nothing but a burden. When we reduce it to its core, we are facing a difficult dilemma.
Access to assisted dying could reduce suffering for the terminally ill. That is a choice that some people would like to have, and some people would make that choice without any undue pressure. If we vote against this Bill today, they will not have that choice. I caution against avoiding facing up to this hard moral reality by arguing that whatever people may fear about dying can always be managed by modern medicine. For all that it can achieve, modern medicine cannot achieve everything. We have heard examples today of the worst illnesses that do more than cause pain. The hon. Member for Bury St Edmunds and Stowmarket (Peter Prinsley) and my hon. Friend the. Member for Hinckley and Bosworth (Dr Evans) described dying from a catastrophic bleed that takes a person’s life in a panicked final moment.
Of course, the treatments we may use to help people with pain often rob them of what they may sincerely feel to be their own independence and dignity. Some people may not want to spend their final days in a drug-induced state of semi-consciousness to manage their pain. Those minded to vote against the Bill should give that the greatest possible consideration. I do not think that the Bill’s opponents can deny it, any more than its proponents can deny that if this law is passed, it will represent the crossing of a significant legal, societal and moral Rubicon. Every other expectation that we have of the state is for it to help to extend and protect life, but we will instead be asking the state to procure the medicines, provide the staff, and sign off through the courts a process that is designed to lead—and will lead—to someone’s death.
A deep respect for the sanctity of life is not the preserve only of religious thinkers. Opponents of the Bill place great weight on that consideration. They argue that once we accept that the state and its citizens can play a proactive role in causing death, the debate will shift from whether it should do that at all to how and when it should. It may be that we pass this legislation and no other in future, but those who have the utmost concern about even the possibility of an expanded Bill may vote against this one as the surest way for them personally to prevent that from happening.
The Mother of the House, the right hon. Member for Hackney North and Stoke Newington (Ms Abbott), argued that coercion is not limited to the selfishly motivated relative directly pressuring a vulnerable person. It can be as simple as knowing that people in the same position as oneself could and did choose to die. Some Members worry that people will then ask themselves not just “Do I want to die?”, but “Should I want to die?”
So where does this leave us? All of us can make a sensible and reasonable case for our positions, and even point to care and compassion, as we see it, in support of our view. Taking all this together, I think it means that one thing more than anything else should be our guiding principle today: we should, above all else, vote with great humility, and with respect for each and every vote cast in whichever direction. I want to direct that sentiment to the country at large. There are passionate campaigners on both sides of the debate, with their own perspectives, who fear greatly the outcome today if it turns out not to be the one that they want. I say to them that as well as being MPs, those voting today are also sons, daughters, brothers, sisters, parents and grandparents. Each Member will have in mind what they would want for their families and themselves.
Our final decisions will come at the end of a great deal of thought and careful consideration. As the hon. Member for Vauxhall and Camberwell Green (Florence Eshalomi) said, if people listened closely enough today they will have heard us all speaking with one voice—the voice of passion, for those people and causes that we are trying to aid with our vote, even if those people and causes are different. That passion represents this House at its very best. That should not be forgotten. I hope that it is something on which we can all agree.
The Parliamentary Under-Secretary of State for Justice (Alex Davies-Jones)
This Second Reading debate on the Bill sponsored by my hon. Friend the Member for Spen Valley (Kim Leadbeater) provides the House and the country with an opportunity to discuss this complex and sensitive issue. I make it clear that I stand at the Dispatch Box today not as the MP for Pontypridd representing the views of my constituents, although I thank each and every one of them who took the time to contact me with their considered opinions. I stand here today as the Government Minister responsible for the criminal law on this issue in England and Wales, contained in the Suicide Act 1961.
As the Government remain neutral on this topic of conscience, and out of respect for my ministerial colleagues who are not able to outline their views in today’s debate, I will not be sharing my personal opinions on this matter. I will, however, be taking part in the vote. With all that in mind, I will keep my response brief and not take any interventions. The Government are of the view that any change to the law in this area is an issue of conscience for individual parliamentarians. It is rightly, in our view, a matter for Parliament rather than the Government to decide. Accordingly, the Government Benches will have a free vote should the views of the House be tested today.
If the will of Parliament is that the law in this area should change, the Government will of course respect their duty to the statute book and ensure that any Bill is effective and its provisions can be enforced. I thank my hon. Friend the Member for Spen Valley for bringing this important national conversation to the fore and for conducting her campaign with respect and integrity. I pay tribute to the campaigners on both sides of the debate, including Dame Esther Rantzen, Liz Carr, Nathaniel Dye and Baroness Grey-Thompson. They have all used their voices to advocate for what they believe and have contributed significantly to the important national conversation around death.
Regardless of views, the one thing we have in common is that we will all experience death at some point. Death is a topic that we do not tend to talk about very much, but these discussions have undoubtedly enabled families up and down the country to talk openly about their wishes and how they feel about their own death. That powerful honesty is a tribute to how Members of this House and campaigners have conducted themselves throughout, and I thank them for informing today’s debate.
Kit Malthouse
claimed to move the closure (Standing Order No. 36).
Question agreed to.
Question put accordingly, That the Bill be now read a Second time.
Division 51
Question accordingly agreed to.
Ayes: 330
Labour: 235
Liberal Democrat: 61
Conservative: 23
Green Party: 4
Reform UK: 3
Plaid Cymru: 3
Social Democratic & Labour Party: 1
Independent: 1
Noes: 275
Labour: 147
Conservative: 92
Independent: 14
Liberal Democrat: 11
Democratic Unionist Party: 5
Reform UK: 2
Traditional Unionist Voice: 1
Plaid Cymru: 1
Alliance: 1
Ulster Unionist Party: 1
Mr Speaker
Under Standing Order No. 63(2) only one motion relating to the committal of the Bill may be moved, and that has been done.
Terminally Ill Adults (End of Life) Bill (First sitting)
Tuesday 21st January 2025
(10 months, 3 weeks ago)
Public Bill CommitteesTerminally Ill Adults (End of Life) Bill 2024-26 Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 21 January 2025 - (21 Jan 2025)
The Committee divided: - Ayes: 8 / Noes: 14 - Question accordingly negatived.
The Chair
Good afternoon. In the Committee that I was in this morning, someone asked if they could remove their jacket, which seemed unbelievably spartan, but if any Member wishes to do so, they may. We are now sitting in public, so the proceedings at the present are being broadcast. Before we start, I have a couple of preliminary remarks. Please will you all turn off your mobile phones and other noisy electronic devices. I am also asked to remind you that tea and coffee are not allowed during sittings; if you want them, you will have to go outside.
We shall first consider the motion on the amendment paper tabled by the Member in charge of the Bill, Kim Leadbeater, which is to sit in private to consider matters relating to the sittings motion.
Kim Leadbeater (Spen Valley) (Lab)
I beg to move,
That the Committee do sit in private to consider matters relating to the sittings motion.
It is a pleasure to serve under your chairmanship, Sir Roger, and to be here for the first formal meeting of the Terminally Ill Adults (End of Life) Bill Committee. Ahead of the oral evidence sessions next week and the line-by-line scrutiny thereafter, we have two jobs to do this afternoon. One is to confirm the sitting times for the Committee and the other is to confirm the witnesses for oral evidence. Following discussions, I have taken the decision to have some of our sitting today in private. That is normal procedure for discussing witnesses and I think it is the right way to proceed, given that some of those discussions will probably involve conversations about the suitability of witnesses who are not here to speak for themselves. It would be inappropriate to discuss named individuals in such a way. Transparency is of course very important, but so is respecting individuals’ privacy. I hope that is clear to colleagues and to others.
I appreciate that members of the Committee and those viewing our proceedings may wish to know about the purpose and effect of this motion. Most Public Bill Committees are subject to programming, and the Programming Sub-Committee would discuss in private which witnesses to hear from. Similarly, Select Committees discuss in private which witnesses they will hear evidence from. Out of respect for the named individuals that we may call to hear evidence from, I propose that we discuss them informally in private. Once that informal discussion has concluded, the Committee will move back into a public session to formally consider the sittings motion. Any Member who wished to speak about the motion publicly or move an amendment would then be able to do so.
Danny Kruger (East Wiltshire) (Con)
It is a pleasure to serve under your chairmanship, Sir Roger. I look forward very much to the process of this Committee and to working with hon. Members to do what we can to ensure that a good Bill is presented back to the House.
I very much respect the points made by the hon. Member for Spen Valley. Nevertheless, I do have some real objections to the motion, which I encourage Members to oppose. The fact is that this debate was due to be held in public—in fact, people have travelled here in the expectation that they would be able to attend and observe our debate on the sittings motion—but last night, for reasons we do not fully understand, a decision was clearly made to table a motion that we sit in private. I would be grateful to understand why that decision was made so late.
My general point is that there is a clear public interest case. The public should understand why witnesses have been chosen and why other people have not, and if there are concerns about the witnesses, they should be aired publicly. This is the only time that the public are being consulted—that experts from outside Parliament have a chance to contribute to our deliberations. I fail to understand why those discussions cannot be held in public. The only argument that I can imagine—and the hon. Member for Spen Valley made it—is that Members might for some reason be uncivil or speak disrespectfully about potential witnesses, which I do not for a moment believe. I am sure that you, Sir Roger, or the other Chairs will keep us in order throughout our proceedings.
We are here to talk about the overall balance and particular qualifications of the witness list. Looking at the witness list that was presented this morning by the hon. Lady, I have very serious concerns, which should be aired publicly, about the list. It includes eight witnesses from foreign jurisdictions, who are being called to give evidence from abroad; all are supporters of assisted dying in their jurisdictions. There are no people speaking against the operations of assisted dying laws internationally. There are nine lawyers on the list—all of them, with the exception of three who appear to be neutral, in favour of a change in the law. There is not a single lawyer against this Bill. Sir James Munby was suggested, but I understand he has been removed. There might be a perfectly good reason for that, but he has spoken against the Bill.
There is nobody on the list from deaf or disabled people’s organisations, but the UN convention on the rights of persons with disabilities recognises the importance of engaging with such organisations in laws of this nature. With the exception of Dr Jamilla Hussain, there is no one on the witness list who can speak to the equality impacts of assisted dying.
The Chair
Order. I appreciate that the hon. Member for East Wiltshire, and indeed all members of the Committee, received the final version of these documents fairly late in the day, and I am not unsympathetic to hearing what any Member wishes to say, but now the hon. Gentleman is going rather further down the brief than he is probably entitled to. The motion on the amendment paper is very narrow. The Question is, quite simply, that the Committee should sit in private.
Danny Kruger
I understand, Sir Roger, and I accept your reprimand. I was trying to make the case that it should be acceptable for these arguments to be heard in public, but I take your point.
Let me address the specifics of the motion that we sit in private. The point has been made that it is appropriate and, in fact, common for Committees to consider sittings motions privately. In fact, Public Bill Committees that consider private Members’ Bills do not sit in private to consider a sittings motion. That should be the starting point. Members may claim—I think the hon. Member for Spen Valley did—that sitting in private is like a Programming Sub-Committee on a Government Bill, but it is not. Government Bills have a sittings motion that is agreed in the usual channels, between the Whips of each side, and often that does happen privately. The way it works then is that both sides suggest witnesses and agree to them. Those decisions then go to the Programming Sub-Committee, which usually takes a couple of minutes to rubber-stamp them. Then, crucially, the sittings motion goes to the whole Committee, which has the opportunity to discuss what was decided in the Programming Sub-Committee. That is the opportunity for public consideration of the schedule of witnesses in a Government Bill, as set out by the Programming Sub-Committee.
It has also been suggested that the proposal to sit in private today is rather like the private pre-meet that happens before particular evidence sessions, which I am sure we will do when we proceed to take evidence; we will have little private meetings to discuss which Members go in which order and who will ask each question. I fully accept that that is perfectly appropriate for a private discussion, but that is not what this sitting is. Today, we are discussing exactly who we are going to call and the overall timetable for our work. This is much bigger than a discussion about who is going to ask which questions. It is about who the witnesses are going to be.
In the very limited number of private Members’ Bills since 2010 that have had a large number—five or more—sittings, the sittings motions were debated in public. That is the way it works. I could list a whole load, but I will not bother the Committee with that detail. The fact is that we have had no discussion through the usual channels; there are no usual channels in a private Member’s Bill. Everybody in the Committee was invited to submit suggestions to the hon. Member for Spen Valley, which we all did, and we appreciated that invitation. She then made her choice. There was no discussion about who the witnesses should be. It was just a decision made by the hon. Member.
A list was informally communicated last week, which we also appreciated, although it was different from the list before us now. We did not have full advance notice of this list, which we only received at 10 o’clock this morning. It was not tabled in advance and was not on the amendment paper, so we had no opportunity to prepare amendments to the schedule of witnesses or to the timetable that we are discussing. We can table manuscript amendments—and that needs to happen—but the situation still procedurally disadvantages those of us who have concerns about the Bill. Last night, I and colleagues tabled a sittings motion, which I hope we will have the opportunity to debate, in the absence of one from the hon. Member for Spen Valley.
I am afraid that this issue reflects a general concern I have about the process, which is why it is so important that we debate the witness list before a public audience.
Kit Malthouse (North West Hampshire) (Con)
But we will be coming back to public—
Danny Kruger
I look forward to the opportunity to discuss the sittings motion, which I hope we can do publicly. On a general point about process, the Bill was written by a campaign group.
Kim Leadbeater
On a point of order, Sir Roger. That is categorically not true. The Bill was written with senior legislative expertise, along with myself as a sitting Member of Parliament and with esteemed colleagues. I take that point of offence quite personally.
The Chair
Order. A point of order has been raised; I had better reply to it—if only to say that it is not a matter for the Chair.
Danny Kruger
I apologise, Sir Roger, and I apologise to the hon. Lady for causing offence. I hope she will not be offended when points are made that she disagrees with.
Danny Kruger
I am happy to withdraw the suggestion that the Bill was written by a campaign group, on the basis of the hon. Lady’s assurance that it was written by herself. I hope it is not the case that there was significant input from campaigners. I do not see why there should not have been; I just mention it because the Bill came to us with no formal consultation. There was no impact assessment—
Kim Leadbeater
On a point of order, Sir Roger. Surely we are having a conversation about whether we sit in private or not. Can we keep to that matter?
The Chair
Forgive me: I am in the Chair and I will decide—but the hon. Lady is absolutely correct. Once again, I am afraid that the hon. Member for East Wiltshire is straying very wide of the motion on the amendment paper. I would be grateful if he would now come to his conclusion so we can start to move forward.
Danny Kruger
I absolutely will. In fact, I will finish there. The points I have been trying to make are simply in the light of the fact that if the hon. Lady’s motion is accepted, the public will no longer have the opportunity to hear any of our points on the sittings motion—on the process that we will be decide on.
Kim Leadbeater
On a point of order, Sir Roger. That, again, is factually incorrect. We have already said that there will be a private sitting for conversations about individual witnesses, including some that the hon. Gentleman has already started talking about, and then we will open again to the public so that everybody can hear the Committee’s conversations.
The Chair
Order. Once again, that is not strictly a matter for the Chair, so it is therefore not a point of order, although it is now a matter of record. We are going to spend quite a lot of time together and it would be helpful if, reflecting the tone of the debate that took place on the Floor of the House, we were civil and courteous to each other and that the debate was conducted throughout not only these proceedings, but right throughout the entire Committee stage, with customary candour and decency. If we can manage that, accepting that these are highly divisive issues and that strong feelings are held on both sides of the argument, we might just end up with a conclusion that would satisfy most, if not all, people.
Danny Kruger
I genuinely do not want to cause any distress or offence to the hon. Member for Spen Valley. I simply am doing my job, which is to represent my genuine concerns about the process that we are deciding on today. I think it is not appropriate to sit private, and I do not believe it is the case that we will have the opportunity to discuss in public the sittings motion. We are deciding that in private, according to her intention. There is not going to be the chance to debate publicly the list of witnesses or the timetable that we are to follow. So be it. If hon. Members in the Committee want to proceed down that line, that is what we will do. I look forward to that discussion, which I am sure we will have courteously, but I encourage hon. Members to vote against the motion.
Lewis Atkinson (Sunderland Central) (Lab)
I, like you, Sir Roger, hope that we can spend the next five or six weeks in the spirit of collaboration and that we do not get bogged down in procedural wrangling. We need to work across the Committee to get the best procedure we can.
The hon. Member for East Wiltshire made several points, including the precedent for private Members’ Bills. The relevant point here is that this private Member’s Bill is unique already by the fact that the lead Member, my hon. Friend the Member for Spen Valley, has agreed to take evidence—unlike in any other private Member’s Bill. Therefore, in some cases there may be a need to discuss the sensitivity of individual witnesses’ availability and personal circumstances. We cannot agree as a Committee just by calling witnesses in the abstract. We have to agree—as is outlined by my hon. Friend’s motion and indeed by the alternative motion in the name of the hon. Member for East Wiltshire—for them to attend at a specific time and at a specific place. I gently say to the hon. Gentleman that the Committee would do well to have a conversation in private about the individual availability and suitability of some witnesses.
The motion set out on the amendment paper to sit in private is to consider
“matters related to the sittings motion”,
not the sittings motion itself. My hon. Friend the Member for Spen Valley has clearly indicated that we will return to sit in public for the formal proceedings, which I support. That means that the hon. Member for East Wiltshire and any others who wish to place on record their observations can do so then. In the same way that the hon. Gentleman acknowledges happens in Select Committees and other forums where there is discussion about witnesses, how to call them and so on, I suggest that we spend a little bit of time in private to do so too, before agreeing—I hope with a level of consensus across this Committee—to return in public and to operate in public scrutiny as the hon. Gentleman suggests is appropriate.
I support the motion to sit in private for the consideration of these specific matters in initial discussion and then I support returning to public, as my hon. Friend the Member for Spen Valley has indicated, so that we can be subject to the right public scrutiny for the decisions that we make today.
Kit Malthouse
I was going to make exactly the same point. I think my hon. Friend the Member for East Wiltshire has fundamentally misunderstood what is happening. He referred to there being a discussion through the usual channels. What the hon. Member for Spen Valley has proposed is that we have that discussion now—she said informally—because we have not had the chance to do so before, and that we then return. Then my hon. Friend is free to say whatever he likes about whatever witnesses and table his own amendments as he wishes. There is no intention to conceal anything. If I might be so bold, I think he has misunderstood the process.
Naz Shah (Bradford West) (Lab)
Just following on from the speech of the right hon. Member for North West Hampshire, I would not read the situation as a misunderstanding by the hon. Member for East Wiltshire. I read the motion to sit in private not as an informal discussion, but as a very formal discussion. I am grateful to the lead Member for the Bill, my hon. Friend the Member for Spen Valley, who before this meeting explained to me what has now been explained here—about the issue of people’s availability, privacy and so on. But I do not suspect that we will be going into those details. If people are not available, we do not have to discuss why they are not. We do not have to discuss their personal lives. I am not sure that that is a good enough reason not to have a discussion in public. I trust colleagues across the Committee to be collegiate enough and big enough to refer to witnesses with respect. I think that is a given, considering the way in which we have conducted the Bill so far. I therefore do not support the motion to sit private.
The Chair
Mr Woodcock, of course I will call you if you wish to be called. I am rather keen to move forward if we can. Do you wish to make a brief intervention?
Sean Woodcock
I do wish to make a brief contribution. I am broadly sympathetic to the fact that there is considerable public interest in the Bill, so we would all broadly welcome as much public scrutiny as possible of all its aspects. However, I think the hon. Member for East Wiltshire made a meal of his argument, talking about the merits or otherwise of the various witnesses and casting aspersions, which I note he has withdrawn, on my hon. Friend the Member for Spen Valley, who is the promoter of this legislation. I will vote to sit in private, despite the fact that I am sympathetic to the idea that as much of the Committee as possible should be in public.
Question put and agreed to.
The Chair
Once the Committee has concluded its discussions in private, it may—although it does not have to—return to public session.
The Chair
I call Kim Leadbeater, as the Member in charge of the Bill, to move the sittings motion standing in her name, which is available in the room.
Kim Leadbeater
I beg to move, Date Time Witness Tuesday 28 January Until no later than 10.05 am Sir Chris Whitty (Chief Medical Officer for England), Duncan Burton (Chief Nursing Officer) Tuesday 28 January Until no later than 10.45 am The British Medical Association, The General Medical Council Tuesday 28 January Until no later than 11.25 am Association of Palliative Care Social Workers, Royal College of Nursing Tuesday 28 January Until no later than 3.15 pm Dr Rachel Clark, Dr Sam Ahmedzai (Emeritus Professor at the University of Sheffield), Sue Ryder, Association of Palliative Medicine Tuesday 28 January Until no later than 4.15 pm Sir Max Hill KC, Alex Ruck Keene KC (Hon), Sir Nicholas Mostyn Tuesday 28 January Until no later than 5.00 pm Dr Ryan Spielvogel (Senior Medical Director for Aid in Dying Services, Sutter Health, USA), Dr Jessica Kaan (Medical Director, End of Life Washington) Wednesday 29 January Until no later than 10.25 am Dr Greg Mewett (Specialist Palliative Care Physician, Australia), Dr Clare Fellingham (Deputy Director of Medical Services, Royal Perth Hospital, Australia), Dr Cam McLaren (Oncologise, Australia and New Zealand) Wednesday 30 January Until no later than 11.25 am Professor Tom Shakespeare CBE FBA (London School of Hygiene and Tropical Medicine), Dr Miro Griffiths (University of Leeds), Yogi Amin (Partner, Irwin Mitchell), Chelsea Roff (Eat Breathe Thrive) Wednesday 30 January Until no later than 3.00 pm Professor Jane Monckton-Smith OBE (University of Gloucestershire), Dr Alexandra Mullock (University of Manchester), Professor Allan House (University of Leeds), Professor Aneez Esmail (University of Manchester) Wednesday 29 January Until no later than 4.00 pm Dr Lewis Graham (University of Cambridge), John Kirkpatrick (EHRC), Lord Sumption Wednesday 29 January Until no later than 5.00 pm Hospice UK, Dr Jamilla Hussain (Bradford Teaching Hospitals NHS Trust and Hull York Medical School), Dr Jane Neerkin (Consultant Physician in Palliative Medicine), Marie Curie Thursday 30 January Until no later than 12.30 pm Dr Chloe Furst (Geriatrician and Palliative Care Physician, Adelaide), Alex Greenwich MP (MP for Sydney, Parliament of New South Wales), Professor Meredith Blake (University of Western Australia) Thursday 30 January Until no later than 2.00 pm Dr Amanda Ward, Professor Gareth Owen (Kings College London and South London and Maudsley NHS Trust), Professor Laura Hoyano (Professor of Law, Oxford University and Red Lion Chambers) Thursday 30 January Until no later than 3.00 pm Professor Nancy Preston (Lancaster University), Dr Naomi Richards (University of Glasgow), Claire Williams (Head of Pharmacovigilance and Regulatory Services, North West eHealth DipHE Adult Nursing, MSc Pharmacovigilance, and Chair, Greater Manchester Central Research Ethics Committee) Thursday 30 January Until no later than 4.00 pm People and families of those with relevant experience Thursday 30 January Until no later than 5.00pm Mencap, Representative of Senedd Cymru
That—
(1) the Committee shall (in addition to its first meeting at 2.00 pm on Tuesday 21 January) meet—
(a) at 9.25 am and 2.00 pm on Tuesday 28 January;
(b) at 9.25 am and 2.00 pm on Wednesday 29 January;
(c) at 11.30 am and 1.00 pm on Thursday 30 January.
(2) during further proceedings on the Terminally Ill Adults (End of Life) Bill, the Committee do meet on Tuesdays and Wednesdays while the House is sitting at 9.25 am and 2.00 pm.
(3) the Committee shall hear oral evidence in accordance with the following Table:
The motion incorporates an amendment that would involve an extra hour of oral evidence on Thursday 30 January so that we can hear from a representative of the Senedd, to ensure that we cover Welsh devolution, and—as other members of the Committee have advised—from a representative of Mencap.
The Chair
With this it will be convenient to discuss the following: “Thursday 30 January Until no later than 5.00pm Richard Robinson, CEO of Hourglass, Cherryl Henry-Leach, CEO of STADA, Sarah Mistry, CEO British Geriatrics Society”.
Manuscript amendment (c), after
“Dr Ryan Spielvogel (Senior Medical Director for Aid in Dying Services, Sutter Health, USA)”,
leave out
“Dr Jessica Kaan (Medical Director, End of Life Washington)”
and insert—
“Dr Ramona Coelho (Family Physician in Ontario Canada, founding member of Physicians Together with vulnerable Canadians)”.
Manuscript amendment (d), after
“Dr Miro Griffiths (University of Leeds)”,
leave out
“Yogi Amin (Partner, Irwin Mitchell)”
and insert—
“Ellen Clifford (Co-ordinator, UK Deaf and Disabled People’s Monitoring Coalition. Author and Visiting Research Fellow within the Centre for Applied Philosophy, Politics and Ethics at Brighton)”.
Manuscript amendment (e), after “Lord Sumption” insert “Karon Monaghan KC”.
Manuscript amendment (f), leave out
“Dr Chloe Furst (Geriatrician and Palliative Care Physician, Adelaide), Alex Greenwich MP (MP for Sydney, Parliament of New South Wales), Professor Meredith Blake (University of Western Australia)”
and insert—
“Dr John Daffy, previously head of infectious diseases at St Vincent’s Hospital in Melbourne, Dr Stephen Parnis, previous Vice-President of the Australian Medical Association, Professor Sinead Donnelly, a Consultant Palliative Medicine Professor in New Zealand”.
Manuscript amendment (g), leave out “Dr Amanda Ward” and insert
“Barbara Rich (Barrister) and Dr Philip Murray (University of Cambridge)”.
Manuscript amendment (i), at end of table, insert—
Naz Shah
On amendment (b), given the issue we are considering, I think it is important that the Royal College of Psychiatrists is involved. One thing that is very important to me is the issue of coercion, and the royal college would be able to shed light on that. One of the many reasons advanced for giving the Bill its Second Reading was that we would have further debate, and the royal college would add value to that.
On amendment (c), Dr Ramona Coelho is a physician with well-founded concerns about the operation of the law in Canada. She is a member of the Ontario Medical Assistance in Dying Death Review Committee, and she gave evidence to the Scottish Parliament Committee that considered the Assisted Dying for Terminally Ill Adults (Scotland) Bill.
On amendment (d), Ellen Clifford is co-ordinator of the UK Deaf and Disabled People’s Monitoring Coalition, and she has a key role in advocating for people with disabilities.
Danny Kruger
I want to speak in support of the proposed addition of Ellen Clifford. Last week, she won a High Court case against the previous Government for their consultation on benefits reform, so she is no friend of my party, but she is a powerful advocate on behalf of disabled people, and she represents the deaf and disabled people’s organisations that are so important in informing the Government on the implementation of policy that affects disabled people. I recognise that the hon. Lady has included some representatives of the disabled community, but I suggest that there would be particular value in hearing from Ms Clifford because of her role as the co-ordinator of the monitoring coalition of all these deaf and disabled people’s organisations across the country. She is the best person to advise the Committee on the operation of the Bill.
The Chair
Order. Before we proceed any further, let me say that the hon. Gentleman was in order, because I allowed him to speak, but it would be unhelpful if we started to cherry-pick amendments while going through them. Let the hon. Member for Bradford West speak to them—they are being taken together—and then any hon. Member who wishes to comment on any or all of them will have the opportunity to do so. Otherwise, we will have a very piecemeal approach.
The Chair
I do not wish to prevent the hon. Lady from speaking to any of the other amendments, because we have grouped them all. She was doing very well. If she works through them, that will tell other Members where she is coming from.
Naz Shah
Thank you, Sir Roger.
By adding Karon Monaghan KC, an eminent equality and human rights law barrister, amendment (e) would add balance among the lawyers in the Committee. I would also like to add James Munby, or someone from His Majesty’s Courts and Tribunals Service, because we need someone who can speak to court capacity issues in relation to the Bill. Professor Katherine Sleeman is a great expert on all these matters.
I am going through the list, and I am unclear what the Australian MP would add. If we remove the other two, there are other pro-AD Australian experts who will speak instead. If we replace those three, who are experts from—
Kim Leadbeater
On a point of order, Sir Roger. My hon. Friend has just mentioned two names that are not in her amendment, and I find that slightly confusing.
The Chair
Order. First, they are not mine. Please remember that you are addressing the Chair.
Secondly, the hon. Member for Bradford West has a list of amendments that she has tabled, to add some people and remove others. Patently, she cannot refer to people who are not on that list. If she works through it name by name, I think we will get to where we need to be.
The Chair
Are we working from the same list? [Interruption.] Order. Continue to work through the list and you will get to where you need to be.
Danny Kruger
I want to make a general point in support of the hon. Lady’s suggestions.
Naz Shah
I apologise. I thank everybody for bearing with me on this one.
Amendment (e) would insert Karon Monaghan KC after Lord Sumption. I have said that I would like her added because of her expertise.
Amendment (f) would insert Dr John Daffy, previously head of infectious disease at St Vincent’s hospital in Melbourne, Dr Stephen Parnis, previous vice-president of the Australian Medical Association, and Professor Sinéad Donnelly, a consultant palliative medical professor in New York. That is what I was speaking to when I was talking about having three people from one country and not having an alternative voice. I think it is really important to have an alternative voice, and I am not sure what added value the MP for Sydney would bring to the debate when we have so many people contributing from countries that are pro and delivering, rather than from those that have concerns.
Amendment (g) would remove Dr Amanda Ward and insert Barbara Rich, barrister, and Dr Philip Murray from the University of Cambridge.
The Chair
I think you have one more. Would you also like to speak to amendment (i)? It is on the other side of the amendment paper, which we nearly all missed.
Let me assist the hon. Lady: she wishes us to insert, at the end of the table in the sittings motion, a new set of witnesses on Thursday 30 January, to give evidence until no later than 5 pm.
Daniel Francis (Bexleyheath and Crayford) (Lab)
On a point of order, Sir Roger. Amendment (i) clashes with the sitting times on Thursday suggested by my hon. Friend the Member for Spen Valley.
The Chair
The hon. Lady may deal with amendment (i) and with the hon. Gentleman’s proposal. At this stage, let me simply call Kit Malthouse to speak to amendment (b).
Kit Malthouse
I rise to speak to amendment (b) and to the other amendments tabled by the hon. Member for Bradford West. As we discussed in private, I am concerned that the promoter of the Bill, the hon. Member for Spen Valley, has been through an extensive period of trying to collate everybody’s recommendations for the Bill and reach a list that is both manageable within the timeframe and a compromise for all of us on what we would like to see.
The odd adjustment here and there is fine, but we ought to bear in mind that in any one session we need to have sufficient time for people to speak. We have to be careful not to double up because we may or may not think that a particular witness might propose a view with which we are sympathetic, when we already have people who are covering the same subject. On amendment (b), for example, all psychiatrists are regulated by the General Medical Council, as I am sure the hon. Member for Bradford West knows, so effectively the royal college is a doubling up of expertise, which is not necessarily in the interests of time. Similarly, in amendment (c), the hon. Lady is proposing a physician from Canada—
Kit Malthouse
I will just finish, if I may. Our Bill is built on a very different legal framework from Canada’s. Drawing legislative parallels between the two seems like a cul-de-sac, not least because, as the hon. Lady will know, the legal framework in Canada is dictated by the charter of rights and freedoms, effectively a constitution, which has been used there to widen the scope of the law. Canada started from a very different place as well, so I am not totally convinced.
What the hon. Member for Spen Valley has tried to do with the list is to find overseas territories that are analogous to our own and have adopted a model similar to ours. We are therefore trying to learn lessons from the process of debate and legislative procedure that they went through—either to learn from them or to learn from their mistakes. For example, knocking out the Member of Parliament from Australia would be a mistake, not least because Australia has been through a number of iterations with its law. Most of Australia has a bar on doctor initiation of the conversation. The medical profession think that that is a big negative in Australia, as I understand it, so I would like to understand why, politically and in legislation, it was felt that that was needed or helpful, and why it was imposed.
On the other amendments, the hon. Member for Bradford West is making a value judgment about comparative expertise between Amanda Ward and whoever she wants to propose instead—Philip Murray. I do not know why she is making that value judgment, but as far as I can see, the names were properly submitted in the process. The hon. Lady obviously had the chance to submit names during the process. For better or worse, as she may see fit, the hon. Member for Spen Valley has come up with a list that is a compromise. That is not to say that the hon. Member for Bradford West cannot arrange briefings with any of these experts outside the formal process, for Members to attend should they so wish, or that she cannot seek advice from them during the process of the Bill.
My primary concern about the amendments is that we are opening up a whole area of debate where we could all have gone with our suggestions. I would rather stick with the list that we have, because I fear that the hon. Member for Bradford West is doubling up and making value judgments about expertise that are not necessarily warranted.
Danny Kruger
All the names that the hon. Member for Bradford West has suggested were indeed submitted, I believe, to the hon. Member for Spen Valley ahead of the deadline that she put to us at the end of last month.
Kim Leadbeater
On a point of order, Sir Roger. All those names were not submitted.
Danny Kruger
The hon. Lady can feel free to intervene on me without troubling the Chair. I stand corrected if that is the case. We only received the final list this morning. It was necessary to make alternative suggestions ahead of that, which was done. I am now supporting the hon. Member for Bradford West in making suggestions for slight adjustments, as she suggests is all that is appropriate at this point. The list is unbalanced. I had to do a very quick analysis, and of the almost 60 names that have been put to us, 38 of them are in favour of the Bill and the principle of assisted dying, whereas there are only 20 who are opposed. There is an inherent imbalance there. It is only a quick analysis that has been done, and we will be able to do more of that subsequent to this sitting, but that is my impression.
Dr Opher
The Bill as proposed is extremely similar to the Australian law, but it is not similar to Canadian law. Therefore, I do not see that bringing Canadian expertise into the Committee is of any use at all. I also back the right hon. Member for North West Hampshire when he said that in almost all situations we are just replacing one expert for another, so the only contentious bit is whether we have people from Australia in support of or against assisted dying.
A split of 38 to 20, with the other witnesses being neutral, is appropriate and actually reflects the vote in the House. I do not see that as a disadvantage. Are the witnesses really going to change what we are saying? We need to listen to them and learn from them, but having some of them against assisted dying is enough to give us due discipline and ensure we listen to exactly what the problems might be, so I disagree with the hon. Member for East Wiltshire.
Danny Kruger
Very quickly, let me say that 38 to 20—two to one—was not the split that happened on Second Reading. There was a much more finely balanced position in the House. I accept that the hon. Gentleman does not want to hear from Canada and I do not blame him—people who are in favour of the Bill are desperate to keep Canada out of it. Okay—let us look at Australia. There are many people in Australia—MPs included, if we could hear from politicians—who continue to profoundly oppose the Bill on the grounds that it is not working, it is dangerous and it is being expanded. Let us hear some alternative views if we are interested in foreign experience.
Several hon. Members rose—
The Chair
I am going to take the hon. Member for Spen Valley, who is the promoter of the Bill, last.
Sojan Joseph (Ashford) (Lab)
I want to talk about amendment (b). The right hon. Member for North West Hampshire said that all members of the Royal College of Psychiatrists are already members of the General Medical Council. But not everyone on the General Medical Council is doing the same job. Psychiatrists are experts whose day-to-day job is to manage people’s mental state, and deal with people with suicidal thoughts and depression. They are the experts.
I do not think that all members of the Royal College of Psychiatrists are for or against the Bill, so it would be reasonable to listen to those people who are experts in assessing people’s mental state and whether they are having suicidal thoughts—that is part of their job. I strongly support that part of the provision.
Tom Gordon (Harrogate and Knaresborough) (LD)
I want to touch on a few bits of language that have been used so far that just worry me slightly. When we talk about the value that experts can add to this process, it is not necessarily helpful for someone to try to say that some experts would be better than others in that regard. The phrase “best person” was used in one particular instance and there were comments about whether or not experts would add balance.
The list that has been collated has taken the lead sponsoring Member of the Bill a number of weeks and months to produce. Everyone had the opportunity to feed into that process over a period of time. And on balance, it is a list that captures a wide spread of views and different organisations.
During this sitting a number of points of order have been made to correct the record. In the spirit of the Second Reading debate on the Bill in the House of Commons, we need to try to make sure that we are mindful of any comment we make, so that we do not seem to try to say things that are not necessarily accurate.
The point that was made earlier about eight witnesses coming from foreign jurisdictions is important. My understanding of this whole process is that it is not about our trying to decide whether the Bill should go ahead or not; it is about trying to understand what would be workable. So, hearing from people in places that have already implemented assisted dying is far more useful than hearing from people in countries that have not done so. We have also heard from Members about which of those countries are more comparable to us.
It does not necessarily help us if someone takes us round in circles and talks about the point rather than trying to get on with the work. I fear that that is where we are at with these amendments. If we are now trying to rejig who will give evidence and at what time, that stops us from doing the important job of scrutinising the legislation and hearing from the expert witnesses that we want to call.
These amendments are not minor changes. Regarding the list that has already been collated, I know that it has taken a lot of time to establish when the witnesses on it are free and available to give evidence. I am not sure that those witnesses referred to in the amendment have the same level of availability in their diaries. So, on balance, we should proceed as the lead Member has been putting it, and putting it so well.
Lewis Atkinson
I agree with the comments of the hon. Member for Harrogate and Knaresborough. The hon. Member for East Wiltshire said at the start that the purpose of this Committee was not to relitigate the principle of the vote that we had on Second Reading. Yet in his comment just now, he talked about weighing up the numbers in favour or against, which entirely suggests that the issue of witness evidence selection exists in his head and that he is relitigating matters.
I come to the issues around the Australian amendment—amendment (f). Of course the expertise will come from people who are participating in the system. By definition, they are not ethically opposed to it, because if they were opposed to it on the basis of conscience, they would not be participating in the system in Australia. As the Bill makes amply clear, no medical professional or health professional here will be under any obligation to participate in the system here.
Therefore, in order for this Committee to do the serious work of making sure that the Bill is as robust and workable as possible, we need to hear overwhelmingly from people involved in this practice in other jurisdictions, to benefit from their expertise. We do not need to hear from people from other jurisdictions who are, in principle, opposed to this practice. Why would it be appropriate to remove the evidence of a palliative care physician involved in this practice in favour of a head of infectious diseases, whose relevance I do not see because they are not engaged in this practice? That just highlights my point.
I commend my hon. Friend, Kim Leadbeater, for the flexibility she has already shown today in adding names, and for the spirit that she has shown so far. The fact is that all these individuals may give written evidence that we will all consider. I am in favour of us moving on, getting our evidence sessions done and making progress, and dealing with the detail of the Bill, rather than using the selection of witnesses to try to relitigate the Second Reading debate.
The Chair
Order. We are now in formal session, so I gently remind the hon. Gentleman that in formal session we refer to Members by their constituencies and not by their names. I am the only person who uses names, because I can never remember constituencies.
Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)
I, too, commend the hon. Member for Spen Valley for her efforts in pulling together this list; it is an unenviable task, given the number of contributions that were made.
It is important that we do not let the perfect become the enemy of the good. There is a wide range of individuals and organisations that we would all benefit from hearing from, but given the time available to the Committee—which is much more extensive than most private Members’ Bills have, by some margin—we are not in a position to hear oral evidence from all of them. But there is an open invitation for everyone to contribute written evidence and for us, as my right hon. Friend the Member for North West Hampshire noted, to speak to engaged parties outside the Committee to feed into our thought processes and deliberations.
On the amendments tabled, I understand the reasons for amendment (b) on the Royal College of Psychiatrists, but I have to say that I disagree. The hon. Member for Bradford West said it was about coercion. I could understand if she were making an argument that we need to hear from the Royal College of Surgeons about the issue of capacity, so I do not think that this is universally confined to psychiatrists; it is something, as a surgeon, I dealt with every day when I was getting consent for operations. We have to think about how we get a wide range of opinions on the subject: we have the Chief Medical Officer, who can comment on such issues from a policy perspective; we have the BMA, which I am sure will send representatives who will be most able to deal with the questions that are to be asked; and, of course, we have the General Medical Council, which is the ultimate regulator and arbitrator of this issue.
The Committee is also about ensuring that this legislation is as fit and as robust as possible when it goes back to the House for consideration. That is where I think that having a legislator from a jurisdiction in which this has been implemented is crucial. Not having the member for Sydney in the New South Wales Parliament—where they have implemented this, and have dealt with some of the thorny issues that the Committee and subsequently the House will have to deal with—would be a mistake. Likewise, having more geriatricians and palliative care physicians is a better balance than having those with some other expertise—well-meaning as they may be, they are not necessarily dealing with this at the coalface. I do not support the amendments for those reasons.
Jake Richards (Rother Valley) (Lab)
I will not speak for long. I merely echo what my hon. Friend the Member for Sunderland Central said: this is not an arms race. It is not about who can get more experts with different views; it is about trying to get a wide-ranging and broad sense of different aspects of the Bill. The list that my hon. Friend the Member for Spen Valley has produced does that. I made suggestions that are not on it, by the way, but as the hon. Member for Solihull West and Shirley says, we cannot let perfection be the enemy of the good.
I want to push back briefly on some things that have been said about the lawyers and legal experts. I do not accept what the hon. Member for East Wiltshire says about whether they are for or against, and I am not sure that his numbers tally with my reading of their views. That goes to the subjectivity of this issue. It is not black and white; lots of people have complex views on it.
I am not sure whether amendment (g) was moved, but in any event the notion that issues such as ECHR compatibility cannot be handled by Lord Sumption, Lord Neuberger and Baroness Hale—three former Supreme Court judges and potentially the best legal minds of their generation—is frankly absurd. We all have roles and responsibilities, as members of this Committee and as Members of Parliament, to challenge their evidence and to push different cases. I have no doubt that we are all qualified and able enough to do so without hearing from a junior barrister and a junior lecturer. That is not in any way to belittle their expertise, because I have read endless commentary from both the suggested witnesses that is very valuable and could be put to the three former Supreme Court justices, who grappled with such cases time and again.
Danny Kruger
I think Baroness Hale has been knocked off the list. Am I right? I do not think we are going to have the huge pleasure of hearing from Baroness Hale.
Jake Richards
Well, we have had lots of lists, but Lord Sumption and Lord Neuberger are giving evidence, I believe; Lord Sumption is, anyway. These things can be tested and challenged, so the notion that we need to have others is slightly absurd. We have the law lecturer from Cambridge University as well.
Liz Saville Roberts (Dwyfor Meirionnydd) (PC)
Diolch yn fawr iawn. I put it on record that I am very grateful that we will be able to find time for a legal adviser. It will not be a representative of the Senedd, because it has become apparent that the Senedd itself will not provide a Clerk to advise us. That seems to be a weak point in the process of making legislation: I think that as legislators we should be able to receive advice on the issue that is non-political and is perceived as non-political, so we probably need to address that in future. It will not be a representative of the Senedd, but I will seek within the time to get a legal advisor who is recognised as an expert in this field.
Jack Abbott (Ipswich) (Lab/Co-op)
I want to briefly address the implication or inference that my hon. Friend the Member for Spen Valley, who is leading the Bill, has not produced an incredibly balanced set of witnesses, or indeed a scrutiny Committee. I put it on record that in principle I am in support of assisted dying, but I did not feel that I could support the Bill on Second Reading, as I had a number of concerns including the strength of the Bill. We will be listening to evidence and discussing the issue not on the basis of principle, but on the basis of the strength of the Bill, the deliverability of the Bill and the number of safeguards, among other things. We are not here to debate the principle—that is a really important point.
Points that have been made about the suitability or otherwise of the people coming to speak to us. It is wrong to imply that any of those individuals will use their personal feelings or principles and discount their neutrality. Are we really saying that the British Medical Association, the judges who have been mentioned or the chief medical officer will put their own views in place of their expertise and knowledge?
I should say for the public’s benefit, my hon. Friend the Member for Spen Valley ensured that all Committee members were able to submit hundreds of names for consideration. In my view, she has come up with a panel of witnesses who are incredible experts in their field and have long-standing expertise in these areas, and we should absolutely listen to them.
I am sympathetic to the right hon. Member for Dwyfor Meirionnydd, who said that we may need extended time to hear from more people. I know that my hon. Friend the Member for Spen Valley would certainly be sympathetic to that and that we can look to do so, if it is necessary. However, the perfect cannot be the enemy of the good. We have to ensure that we move this Committee along at a decent pace and hear from all these people.
Our job is to scrutinise the suitability of the Bill, not the principles. On that basis I oppose the amendment, although I am not against some of the names that have been proposed. Maybe there will be an opportunity to hear from them in future, but I do not think that we can get into a situation where we are removing some names and adding others. We would be here all week if we did, so I will be opposing the amendment.
The Chair
I now call the promoter of the Bill. I will then call the mover of the amendment.
Kim Leadbeater
I thank colleagues for their time this afternoon. It has been an extremely productive session. I am very proud of the tone of the debate: I think we have done a very good job, as we did on Second Reading, of showing this place in a good light.
I reiterate that there are a range of views in this Bill Committee, in the same way that there are a range of views across the House on this significant and deeply emotive issue. There are a range of views among the witnesses we will hear from, and I spent a huge amount of time ensuring that. Colleagues have given me more than 100 names of people they might like to hear from. I had my own list of people I would like to hear from, and many of them are not on the list of those who will give oral evidence.
I have tried to be extremely balanced, so we will hear from people with a range of views and opinions, but most importantly we will hear from people with expertise. That is the purpose of the Committee: to hear from people who can advise us on the detail of the Bill. We will go through this Bill line by line, and we need to hear from people who can help us to do that. We have some fantastic expertise on the Committee, but for many of us there are areas that we need to learn more about. It is important that the witnesses give us the information to enable us to do that, rather than—as numerous colleagues have said—once again going over the fundamental principles around assisted dying, because we did an excellent job of that on Second Reading.
At the end of our endeavours, we will produce a piece of legislation that will be re-presented to the House, and colleagues will again have the opportunity to vote on it however they see fit. There may be people in this room who vote differently from how they voted on Second Reading; there may be colleagues out there who do likewise, one way or the other.
I am very clear about this Committee’s role, which is to work on the Bill together, collegiately and collaboratively, irrespective of our different views, and re-present it to the House so that the House can continue to do its job. It is not just the Commons; the Lords will also have the opportunity to scrutinise the Bill and table amendments. I have always been open about the fact that this is about us working together. Where the Bill needs to be amended to make it more robust and alleviate people’s concerns, whether that is around coercion or capacity, that is now the Committee’s job. I stand ready to serve and to do that.
We have spent a lot of time this afternoon on this, and quite rightly so. As far as I am concerned, we are now in a position to move forward. I am very happy that we will hear from so many witnesses over several days, and I am happy that I have added more time to that so that we can hear from more witnesses, which I think is important. As colleagues have said, our job now is to get on with this really important piece of work.
Naz Shah
I thank my hon. Friend the Member for Spen Valley, the promoter of this Bill, because she has been very helpful. She has certainly added one of my key witnesses to her list, and I am grateful for that.
I want to respond to some of the points that have been made. One of the biggest issues for me is amendment (b), which would insert “Royal College of Psychiatrists”. My hon. Friend the Member for Ashford made the point that all psychiatrists come under the GMC, but not every member of the GMC is a psychiatrist. That speaks to the issue of coercion, mental health and capacity. That is the expertise that I am looking for in the line-by-line scrutiny of the Bill, and I would really like to hear from the Royal College of Psychiatrists.
I am happy to be guided by you, Sir Roger, because I am new to this process and I have not done a Bill of this nature before, but my only worry with the outside evidence and briefings is that they will not be on the record when we are looking at Hansard and seeing whether they have been taken into account. I would be happy to receive some assurance about that. Yes, we can organise lots of briefings and lots of experts, but does that not defeat the object of having this debate so robustly in the first instance?
The hon. Member for Harrogate and Knaresborough raised the issue of language, and the point about added value. I think that language is correct, because I do want to add value to this debate. I want value added, because it is important for my constituents that when I vote on the Bill on Report, I do so knowing that I have listened to all sides of the debate.
My hon. Friend the Member for Stroud asked whether this is a for-and-against argument. In particular, he said that we do not need to hear from those who are opposed, because we want to strengthen the Bill so that it can go through the House. Although I appreciate the sentiment, I put it to everyone that it is not about getting the Bill through; it is about getting the right information so we can scrutinise whether it is fit to go through the House. For that reason, it is important to hear from those who are opposed. It is naive to think that we only need to hear from people who are in support.
Naz Shah
Sorry—may I just make my point?
I need to know the other side of the argument in order to make a balanced decision. Those who are opposed to the Bill might have very valid concerns, while those who have expertise in support of the Bill might not give me the same arguments. I want to hear a balance. At the moment, I think there is a real discrepancy between the number of people who are for and against the Bill; it is not very close.
I appreciate that my hon. Friend the Member for Spen Valley, the Bill’s promoter, really wants to get this legislation through Parliament. I also value how she has taken part in the debate and been amenable to having discussions both in Committee and in our offices. I have given my reasons for tabling the amendment, and I particularly want the Committee to accept amendment (b), on the Royal College of Psychiatrists; that is my top amendment.
Question put, That the amendment be made.
“Thursday 30 January | Until no later than 5.00pm | Richard Robinson, CEO of Hourglass, Cherryl Henry-Leach, CEO of STADA, Sarah Mistry, CEO British Geriatrics Society”.—(Naz Shah.) |
Date | Time | Witness |
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Tuesday 28 January | Until no later than 10.05 am | Sir Chris Whitty (Chief Medical Officer for England), Duncan Burton (Chief Nursing Officer) |
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Tuesday 28 January | Until no later than 10.45 am | The British Medical Association, The General Medical Council |
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Tuesday 28 January | Until no later than 11.25 am | Association of Palliative Care Social Workers, Royal College of Nursing |
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Tuesday 28 January | Until no later than 3.15 pm | Dr Rachel Clark, Dr Sam Ahmedzai (Emeritus Professor at the University of Sheffield), Sue Ryder, Association of Palliative Medicine |
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Tuesday 28 January | Until no later than 4.15 pm | Sir Max Hill KC, Alex Ruck Keene KC (Hon), Sir Nicholas Mostyn. |
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Tuesday 28 January | Until no later than 5.00 pm | Dr Ryan Spielvogel (Senior Medical Director for Aid in Dying Services, Sutter Health, USA), Dr Jessica Kaan (Medical Director, End of Life Washington) |
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Wednesday 29 January | Until no later than 10.25 am | Dr Greg Mewett (Specialist Palliative Care Physician, Australia), Dr Clare Fellingham (Deputy Director of Medical Services, Royal Perth Hospital, Australia), Dr Cam McLaren (Oncologise, Australia and New Zealand). |
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Wednesday 30 January | Until no later than 11.25 am | Professor Tom Shakespeare CBE FBA (London School of Hygiene and Tropical Medicine), Dr Miro Griffiths (University of Leeds), Yogi Amin (Partner, Irwin Mitchell), Chelsea Roff (Eat Breathe Thrive) |
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Wednesday 30 January | Until no later than 3.00 pm | Professor Jane Monckton-Smith OBE (University of Gloucestershire), Dr Alexandra Mullock (University of Manchester), Professor Allan House (University of Leeds), Professor Aneez Esmail (University of Manchester) |
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Wednesday 29 January | Until no later than 4.00 pm | Dr Lewis Graham (University of Cambridge), John Kirkpatrick (EHRC), Lord Sumption |
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Wednesday 29 January | Until no later than 5.00 pm | Hospice UK, Dr Jamilla Hussain (Bradford Teaching Hospitals NHS Trust and Hull York Medical School), Dr Jane Neerkin (Consultant Physician in Palliative Medicine), Marie Curie. |
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Thursday 30 January | Until no later than 12.30 pm | Dr Chloe Furst (Geriatrician and Palliative Care Physician, Adelaide), Alex Greenwich MP (MP for Sydney, Parliament of New South Wales), Professor Meredith Blake (University of Western Australia) |
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Thursday 30 January | Until no later than 2.00 pm | Dr Amanda Ward, Professor Gareth Owen (Kings College London and South London and Maudsley NHS Trust), Professor Laura Hoyano (Professor of Law, Oxford University and Red Lion Chambers) |
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Thursday 30 January | Until no later than 3.00 pm | Professor Nancy Preston (Lancaster University), Dr Naomi Richards (University of Glasgow), Claire Williams (Head of Pharmacovigilance and Regulatory Services, North West eHealth DipHE Adult Nursing, MSc Pharmacovigilance, and Chair, Greater Manchester Central Research Ethics Committee)
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Thursday 30 January | Until no later than 4.00 pm | People and families of those with relevant experience. |
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Thursday 30 January | Until no later than 5.00pm | Mencap, Representative of Senedd Cymru |
The Chair
The Committee has agreed that the first day of line-by-line scrutiny will be Tuesday 4 February. The deadline for amendments to be considered on the Committee’s first day of line-by-line scrutiny is on Thursday 30 January. The first day of oral evidence will be Tuesday 28 January.
Resolved,
That, subject to the discretion of the Chair, any written evidence received by the Committee shall be reported to the House for publication.—(Kim Leadbeater.)
The Chair
Copies of the written evidence received by the Committee will be made available in the Committee Room.
For the record, we are seeking a Committee Room in which our proceedings can be televised. I will try to find as much accommodation for public space as possible, because there may be considerable interest in the Bill.
Ordered, That further consideration be now adjourned. —(Kit Malthouse.)
Terminally Ill Adults (End of Life) Bill (Money)
Wednesday 22nd January 2025
(10 months, 3 weeks ago)
Commons ChamberTerminally Ill Adults (End of Life) Bill 2024-26 Read Hansard Text Watch Debate Read Debate Ministerial Extracts Amendment Paper: Notices of Amendments as at 22 January 2025 - (22 Jan 2025)
The Minister for Care (Stephen Kinnock)
I beg to move,
That, for the purposes of any Act resulting from the Terminally Ill Adults (End of Life) Bill, it is expedient to authorise the payment out of money provided by Parliament of:
(1) any expenditure incurred under or by virtue of the Act by the Secretary of State, and
(2) any increase attributable to the Act in the sums payable under or by virtue of any other Act out of money so provided.
The Government are of the view that the Bill is a matter for Parliament rather than the Government to decide. In order for the Public Bill Committee that is now scrutinising the Bill to consider the clause that would have spending implications, the Government must first table this money resolution. This is purely to allow the Bill to be debated in Committee, and the Government have taken the view that tabling this motion does not act against our commitment to remain neutral. Only the Government can table such motions, so tabling it allows further debate to happen. To assist that debate, the Government will also assess the impacts of the Bill, and we expect to publish the impact assessment before MPs consider the Bill on Report.
Madam Deputy Speaker (Ms Nusrat Ghani)
I call the shadow Minister, Dr Kieran Mullan.
Dr Kieran Mullan (Bexhill and Battle) (Con)
I am conscious of the limited time available and so will keep my remarks focused. I appreciate that it is not commonplace for Front Benchers to speak at length on money resolutions, but this is not commonplace legislation. I reiterate that His Majesty’s loyal Opposition have taken a neutral stance on the merits of the Bill, both in principle and in detail. The House has expressed its support for the introduction of assisted dying, and Members are currently considering the Bill in detail before it is presented back to the whole House for further consideration. The money resolution is a necessary part of associated legislation. Proponents of the Bill will welcome the Government bringing this forward, as it is not unheard of for Governments to withhold these resolutions in a manner that delays the progress of legislation.
Jim Shannon (Strangford) (DUP)
There are concerns from those of us who voted against the assisted dying Bill. I understand the process, and how it works with the money resolution coming forward, but on the day that this was finalised I asked a question, and the make-up of the Committee was 15 of those who voted for the Bill, and nine who voted against. A secrecy process has now been brought into the Bill, and we do not know what is happening. That is against the rules of this House. The second thing they have done is the issue of withdrawing the opinion of the judges, which is also out of order.
Dr Mullan
I hope that the hon. Member will appreciate that the money resolution is narrow in scope—I will perhaps bring the attention of the House to some tangentially related issues when it comes to the role of the Government in these proceedings.
As I said, proponents of the Bill will be glad of the progress that has been made, but this motion brings into sharp focus the fact that at some point the Government will need to fund, organise and provide assisted dying services to reflect any legislation that receives Royal Assent. As the Minister said, the money resolution will provide the legal basis for funding that service. I recognise that we are not yet at the stage when the Government can say with certainty what exactly those services and their associated funding will look like. There is time still for changes to be made, and we should not of course make an absolute assumption that any Bill will pass all its stages, as likely as that is, given the will of Parliament as expressed to date.
As the Bill proceeds, it will become increasingly important, and helpful to Members voting on future stages, to begin to have some idea of how the civil service and Ministers are envisioning enacting the legislation, not least in relation to the matter of resources before us today. The hon. Member for Spen Valley (Kim Leadbeater) estimated that up to 3% of adults may eventually choose assisted dying. In 2023 there were 577,620 adult deaths in England and Wales. If 3% of those were assisted dying cases, that would result in about 17,000 cases annually. Those are not insignificant numbers, and Members will recognise the considerable existing challenges with resources and personnel in the relevant areas of spending.
Although this is not a Government Bill, the Lord Chancellor has ultimate responsibility for ensuring the effective functioning of our legal system and judiciary, as does the Secretary of State for Health and Social Care for the delivery of this service, and how that will balance and interact with the other health services provided. I therefore have a small number of questions relating to resources, which I hope the Minister agrees will assist the House in better understanding how the Government are approaching such matters.
If information is not forthcoming today, it is crucial that the Minister sets out, in slightly more detail than he did earlier, at what point the Government will engage more fully with the detail of how they intend to resource the Bill, and start sharing their considerations. First, have the Government produced at the very least internal estimates of a potential range of the costs of delivering an assisted dying service, for both the NHS and the judiciary? If they have, will they share that with the House today? If they have not produced internal estimates, when do they anticipate doing so, and when do they intend to publish such estimates?
Secondly, have the Government identified potential sources of funding for the service? If they have, will that funding come from existing departmental budgets, or will it be allocated from outside currently allocated funding? In the latter case, where will those additional resources be drawn from? If the Government have not yet produced options for Ministers to consider on these questions, when will they do so, and when will they share them with the House?
Questions of resources relate to the impact on existing services of any decisions that the money resolution enables. The closer we come to the closing stages of the Bill, particularly ahead of any final parliamentary vote on a settled set of proposals, the more important it will be that Members get the benefit of answers to those questions, which can only come from the Government. It is important to say that it is perfectly legitimate for Members to decide that a better understanding of these issues is not an absolute necessity, and it will be for Members to decide whether they are happy to support legislation purely on principle. That may well be the position for many Members of the House, but I think most would agree that it would be preferable to be able to vote with, at very least, possible approaches and assessments of these matters, even if not definitive answers.
In conclusion, these are not merely procedural or technical issues. The Government’s tabling of this motion signals an acceptance that, should the Bill become law, the financial costs will need to be met, and that will not be a minor area of expenditure. This House has a duty to scrutinise every aspect of the Bill, and I urge the Government to provide a degree of clarity that only they can provide to assist Members in doing that. At this stage there has been a clearly expressed will of Parliament to introduce this service, and it is right for the Government to make legal provision for funding it in principle. However, the Government should enable Members to make decisions at future stages with as good an understanding as possible of how the legislation they may wish to support will translate into the real world.
Several hon. Members rose—
Madam Deputy Speaker (Ms Nusrat Ghani)
Order. Members should keep their contributions within scope. This is about the financial implications of the Bill if it is passed, so let us keep contributions within scope.
Kim Leadbeater (Spen Valley) (Lab)
On 29 November last year, in a debate widely described as showing Parliament at its best, this House sent the Terminally Ill Adults (End of Life) Bill into Committee for scrutiny by a majority of 55. It was the clear will of this place that the Bill should be allowed to proceed, in the knowledge that Members will have further opportunities on Report and beyond to decide whether it should be enacted. For that process to continue, the resolution before us today must pass.
Those who oppose the Bill on principle—something they are absolutely entitled to do—are seeking to suggest that there is something extraordinary or improper about this process, and on that they are simply wrong. This is a standard procedure that comes before this House all the time. Without it, there can be no Bill—that, I humbly suggest, is sadly what some people intend. This is not a blank cheque, as some Members have suggested. The right time to discuss the detail of what expenditure may be required is when we know the final shape of the Bill. At that point, if Members are concerned about the expenditure required, or indeed anything else, they can of course vote as they wish.
Sir John Hayes (South Holland and The Deepings) (Con)
The hon. Lady says that the right time to discuss the capacity of the judiciary and health service to deliver the Bill is presumably once it has completed its Committee stage, but should the Committee that considers the Bill have the impact assessment that allows it to scrutinise it line by line, mindful of the implications that it might have on our health service and our judiciary?
Kim Leadbeater
I respect the right hon. Gentleman’s question, but I would say that point is slightly out of the scope of the money resolution. However, I think it is a fair point, and I acknowledge that a lot of work is being done, as the Government said it would be, to look at the workability and operability of the Bill. I am working closely with Departments on those issues, and those conversations will continue, alongside the work of the Committee. I hope that provides him with some reassurance.
The other point is that I have never sought to stifle debate on the Bill or this really important issue; quite the contrary. I value it and I welcome it, but I do ask that it continues to be conducted in the same respectful and considered manner as on Second Reading. Where we disagree, let us do so with respect and without questioning each other’s motives or integrity.
Ruth Cadbury (Brentford and Isleworth) (Lab)
I congratulate my hon. Friend on how she has conducted this important debate. On stifling debate, does she share my hope that there will be no vote against the money resolution, because such a vote would end debate? While there was a strong vote in support of the Bill, there were many strong arguments for amendment and there was opposition. Does she agree that that debate needs to happen as the Bill proceeds and not be stifled and ended today?
Kim Leadbeater
I absolutely agree with my hon. Friend. Having done such a powerful job of debating this issue on Second Reading, it is crucial that we continue that debate in the right manner, as Parliament voted to do. It would be wrong for anything that happens today to put a stop to that debate and those discussions.
Let us not forget that the public are watching our deliberations carefully and that the issue we are discussing means a huge amount to many people. It is extremely serious and, for many, hugely emotive. We owe it to our constituents to treat it with the seriousness it deserves. I ask Members to consider carefully what it would say about us as a Parliament if such an important debate were to be curtailed as a result of procedural manoeuvring, which, sadly, is what I worry is being attempted by some colleagues today.
The money resolution is not about the pros and cons or the detail of the Bill; it will simply allow for proper scrutiny—including of any cost involved—to continue, and mean that the Bill Committee can begin its important work. I urge Members to support the resolution.
Several hon. Members rose—
Madam Deputy Speaker (Ms Nusrat Ghani)
To ensure that as many colleagues as possible can get in during the time allowed, there will be a speaking limit of four minutes.
Sir John Hayes (South Holland and The Deepings) (Con)
The hon. Member for Spen Valley (Kim Leadbeater) is right that this is not unprecedented; in fact, it is the normal procedure for a money resolution relating to a private Member’s Bill to be debated ahead of Report. That is not true of Government Bills, as you know, Madam Deputy Speaker. However, it is really important that we examine the detail of what we are presented with today, which is an open-ended commitment. The wording makes it absolutely clear that
“any expenditure incurred under or by virtue of the Act by the Secretary of State, and…any increase attributable to the Act in the sums payable under or by virtue of any other Act”,
money is so provided. The hon. Lady says that this is not a blank cheque, but it cannot get much more blank than that. Essentially, any moneys associated with the Bill—if it becomes an Act—will be provided.
Pertinent to this vote, we have to ask the question: where will that money come from? Presumably it can come only from existing resource, and one assumes palliative care; it will not come from A&E, surgical treatments or GPs, so it will presumably come from that source. One does not know, of course, but it is perfectly reasonable to ask that question.
Sir John Hayes
I will in a second.
On the judicial point, I simply say to the hon. Lady that the establishment of a judicial competence to deal with this system will be resource-hungry. To offer her a parallel example, when I took the Investigatory Powers Act 2016 through the House, we established what was then described as a double lock—it became a triple lock—which required a whole new judicial function to make it happen. It may well be that the same applies in this case, with immense cost and immense pressure on an already overstretched judiciary.
Therefore, in considering those precise matters—not the ethics of the Bill, which are an entirely different consideration, and highly questionable—it is absolutely right and pertinent to ask what this will cost, when, and how it will be delivered. Those questions have not been answered. I scanned the hon. Lady’s speech on Second Reading, and it contained no mention of scale or cost. That is why I am immensely sceptical about what we have before us. While I accept that the money resolution is not unprecedented, it is certainly not desirable.
Maya Ellis (Ribble Valley) (Lab)
A major argument in the debate on assisted dying has been about making it accessible to all, rather than only those who can afford to travel to access it. The argument is made about dignity in dying. I struggle to see the fairness, however, in pursuing spend to allow dignity in dying when we struggle to fund dignity in other areas of the NHS. I am sure that many midwives and those who have been through pregnancy and birth in recent years will agree that severely underfunded maternity services can lead to experiences completely lacking in dignity for mothers. The impact can last throughout the life of a family. In September 2024, the Care Quality Commission found that almost two thirds of inspected maternity units were unsafe to birth in.
We likewise know that the dignity offered to disabled people, those receiving palliative care and those in supported living is often far less than they deserve. One of the biggest flaws in the Bill, therefore, is the money resolution. I do not see how we can sign a blank cheque to guarantee dignity only in death when dignity in all parts of life is still so desperately in need of resources, and equally deserving.
Maya Ellis
I will not, if that is all right. Sorry.
At the other end of the spectrum, we need to be acutely aware that we are not today expanding overall budgets in the NHS, so what we agree to in this money resolution will put further strain on our already stretched NHS. That means that, for example, St Catherine’s hospice in my constituency, which already requires private fundraising for almost 80% of its income, will have further NHS funding pulled away to accommodate publicly funded assisted dying. It is prudent for us to make clear what we put at risk if we vote through the Bill, having agreed this money resolution. The resolution means that money for palliative care will likely be diminished. The House should consider that in the next stages of the Bill, given what it is supposedly designed to alleviate.
Finally, let us make it clear what we are agreeing to today. I have asked a few times, and never really got a clear answer, why making assisted dying legal has to go hand in hand with a commitment to funding assisted dying on the NHS. Most of us, including me, fiercely protect the idea of an NHS that is free at the point of use, but we risk maternity services encouraging women to pursue induced births rather than planned caesareans, partly because of resource limitations in the NHS. I caution against an agreement to spend money on guaranteeing dignity in dying when we lag so far behind on guaranteeing dignity in birth, and in many other areas.
Kit Malthouse (North West Hampshire) (Con)
I rise to support the money resolution, broadly for two reasons. The first is the significant risk to the reputation of the House. One of the greatest criticisms of this place is that we play games and do not take these issues seriously. We all accept that, as my right hon. Friend the Member for South Holland and The Deepings (Sir John Hayes) said, a money resolution is normally a technicality for private Members’ Bills. If the Bill fell at this moment, we would not only deny debate to those Members who expressed either soft opposition or soft support for it on Second Reading, but strike a hammer blow to millions of people in the United Kingdom who are looking to us for a sense of leadership and clarity on this issue.
I hope that there will not be a Division today, but if there is, I urge Members to vote in favour of the resolution. Those Members thinking of voting against should bear in mind that the message that would go out from this place would be that a matter of life and death—a matter fundamental to many people, and on which there are profound feelings on both sides of the debate, as we have seen—can be dismissed on the basis of a casual, technical vote on a quiet Wednesday afternoon. That would be a bit of a travesty. I hope that Members realise what is reputationally at risk.
Secondly, there is broad misunderstanding of what the Bill is designed to do. The hon. Member for Ribble Valley (Maya Ellis) said, in effect, that the money resolution offers a blank cheque. Well, the rest of the NHS is already a blank cheque. Over the years, things have evolved in such a way that Parliament gives Government Ministers permission, through estimates, to make judgments about how they prioritise spending on the services for which they are responsible; and the Chancellor makes judgments about spending for Departments. If this House starts micromanaging spending—saying what the Government should spend on particular drugs, treatments, crimes or interventions—we will end up in an unholy mess. I have yet to hear anyone in this House object, for example, to the creation of a new criminal offence on the grounds that it would be more costly for the police. I have yet to hear anyone in this House object to the NHS prescribing a new drug because it will be costly for the health service.
We must remember that the people we are talking about—the dying individuals who may want to make this choice at the end of their life—are already receiving treatment in the national health service. They are already reliant on expensive care services, drugs and so on, as well as social support mechanisms that cost the taxpayer. It is, of course, important that we see the overall impact assessment, but we should not pretend that the status quo is cost-free, because it is costly—not only in monetary terms, but in terms of humanity. We should not forget that we are attempting to put a price on quality of life, and on mercy at the end of life. I urge Members to reflect on that and support this motion.
Finally, let me address the misunderstanding by the hon. Member for Strangford (Jim Shannon). There was no attempt yesterday to create any air of secrecy about consideration of the Bill in Committee. There was a brief period in which we had hoped to have an informal discussion about witnesses, before the public sitting resumed, which is normal for Bill Committees in these circumstances. Unfortunately, that has been misconstrued, but I guarantee that the rest of proceedings will be open for the public to view.
Paula Barker (Liverpool Wavertree) (Lab)
My hon. Friend the Member for Spen Valley (Kim Leadbeater) has led this important debate with openness and transparency at all times, and has treated all views with dignity and respect. She is acutely aware of the strongly held beliefs on both sides of this debate. Many right hon. and hon. Members expressed the concern that there was not enough time to debate the Bill. It is important to ensure the maximum amount of debate on this important Bill, and to ensure that all views are heard. The public wish to hear a considered view from all parliamentarians in this place, and we owe it to them to ensure that the debate continues, while treating each other with dignity and respect, just as we did last November, when we saw this place as its very best.
A money resolution is standard for any Bill put forward by the Government or an MP. The wording is identical to any other money resolution for any other Bill. It is important that all Members are clear that this debate is not about the merits or otherwise of the Bill, and it would be incredibly disappointing if any Member sought to use it as such.
Mr Alex Barros-Curtis (Cardiff West) (Lab)
Does there not appear to be some confusion about the motion? It clearly says that this procedural motion has to be laid before the House
“for the purposes of any Act resulting from”
the scrutiny and debate that is to come. If hon. Members on either side of the debate, and on either side of the House, having considered the final version of the Bill, think that it should not be agreed to for monetary reasons, will not that be the time to vote no to the Bill?
Paula Barker
I will come to that point shortly. My hon. Friend the Member for Spen Valley has sought every opportunity to be inclusive, and has sought a wide range of views, because she knows the value of all voices being heard. If the resolution does not pass today, the Bill cannot progress. I remind right hon. and hon. Members that that is not what the House voted for in November, and it is certainly not what our constituents want.
Three full days of oral evidence from 50 witnesses will begin next week. That will be followed by at least eight full days of scrutiny. None of that will proceed if the resolution is voted down today. I appeal to Members across this place, regardless of their views, to let us have the long overdue, open and transparent debate that will enable Members to formulate a final opinion on the Bill, irrespective of what that may be. To stifle it would be to stifle democracy. We must remember that democracy is a slow process of stumbling to the right decision, instead of going straight to the wrong one.
Brian Mathew (Melksham and Devizes) (LD)
Let me start by saying that I am in in favour of the motion, so I will vote for it, if it comes to that. However, would the hon. Member for Spen Valley (Kim Leadbeater) and the Minister consider the inclusion of two social workers on the group, made up of two GPs and a High Court judge, that assesses requests for assisted dying?
Madam Deputy Speaker (Ms Nusrat Ghani)
Order. Your contribution has to be within the scope of what we are discussing, which is the financial organisation of the Bill.
Brian Mathew
There would be added expense. Social workers are trained in understanding family dynamics, and need desperately to be involved in these situations.
Kim Leadbeater
I take that point on board. I had a very productive meeting with the Association of Palliative Care Social Workers yesterday, and we had a useful conversation on that issue.
David Smith (North Northumberland) (Lab)
I would like to raise a couple of practical and principled concerns about the finances around assisted dying. First, on the practical, I welcome the comment from my hon. Friend the Minister that there will be an impact assessment in due course. However, until we see it, we have no idea what the measure will cost. We are being asked to approve a blank cheque for assisted dying. We have heard that the NHS is a blank cheque, but the NHS has a clearly defined budget. At this point, we do not have any sense of what the Bill will cost. If that were the case for any other legislation, we would be shouting about it.
The Bill represents a profound change to the very nature of our healthcare system, and we are simply guessing at the cost. That is not good for the Bill Committee’s ability to scrutinise, and not good for this place, or for the democratic and legislative process. In order to legislate well, we need a firm commitment. I am glad to have heard that the impact assessment will be published before Report. We have heard from my hon. Friend the Member for Spen Valley (Kim Leadbeater) that the motion is routine, and I accept that. However, the consequences are extraordinary, and that is why this is an important moment.
On the principle, whatever the cost, once it is assessed, and despite the Government’s recent financial boost for the hospice sector, palliative care is massively underfunded. The postcode lottery in the provision of end of life care has led to some of the horror stories that we heard on Second Reading. The hospice sector has only 30% of its funding provided by central Government, so this technical stage represents a commitment to taking potentially scarce funding from end of life care and allocating it to ending lives.
David Smith
I do not have time. That opens up the dark possibility of a race to the bottom—to looking for savings in the health and social care budget. Any Government would be tempted, where cost saving is a possibility, to push assisted dying as a cost-saving measure; we have seen that in jurisdictions such as Canada.
Finally, let me say this with humility and respect to my hon. Friends on my left. I fear that the Bill will lead to the marketisation of death and dying. We have learned from other jurisdictions that many medical services and clinicians do not want to be part of the delivery of assisted dying, for reasons of principle or because they fear that they will be sued. Independent private health organisations will have to take over to fill the space. Those businesses will have shareholders and annual reports. They will be driven by the desire to maximise profit, with death for the bottom line. They will advertise and seek to expand their market share.
David Smith
I am sorry; I am almost finished. This could seem like a tangential point to make on a money resolution, but, to summarise this and my other points, I fear the consequences of the relationship between money—this resolution in particular—and assisted dying. Although I will not be voting against this resolution, because I believe in the democratic process, I think we seriously need to consider the relationship between money and this Bill.
Dr Ben Spencer (Runnymede and Weybridge) (Con)
Unfortunately, this debate and the circumstances of this money resolution are a manifest example of the concerns I have raised about this Bill and the process of taking it forwards. Many Members talk about debate, and it is important that this issue is debated; however, what is critical is scrutiny—ensuring that we can properly scrutinise the Bill, the work that is put into a very complicated area of law, and what would be, if the Bill were to pass, a manifest change in the relationship between the state and its citizens.
This money resolution is in the name of a Treasury Minister, the response at the Dispatch Box on Second Reading was from a Justice Minister, and we have a Health Minister here today. We cannot say whether the Bill will be paid for by the Ministry of Justice, and what the liability will be. What is the health liability? How much will be in private hands, and how much will not? What about legal aid? There are all these spin-out costs from the Bill.
As a parliamentarian, I like to scrutinise. I want to see impact assessments; I want to see what the spending that I am being asked to vote for looks like, yet we do not have that information. Members have said that the Bill will come back on Report, and the Government are in a hokey-cokey position: sort of in, sort of out—what’s it all about? I am sorry, but I do not think that is good enough for something of such importance to our constituents and for Parliament to get right.
Antonia Bance (Tipton and Wednesbury) (Lab)
Last summer’s Labour manifesto included the words
“Fully costed, fully funded—built on a rock of fiscal responsibility”,
and they were words on which I was proud to be elected. Money resolutions are normally a formality, but not this one—not today. This resolution asks us to give a blank cheque to this Bill, which makes me nervous, because that sounds like something that we in this changed Labour party just do not do. When we put forward a proposal for public spending, we know how we will fund it.
Antonia Bance
No, I will not.
In the case of this Bill, we not only do not know how much it will cost or how it will be paid for, but we do not even know what the money will be spent on. Let us think of the questions that we do not know the answers to. What will be the cost of NHS doctors attending the final appointment and waiting while their patient dies? What will be the cost of a second doctor to sign off? What drugs will be used, and how much will they cost? Will assisted dying happen in hospitals, in hospices or in new, purpose-built facilities? How many will there be, and where?
Antonia Bance
No.
How much will those facilities cost? There are even bigger questions, too. Will this be an NHS service, or will we be contracting private providers? If it is an NHS service, which of my constituents will have to wait longer for an operation or a GP appointment because this Parliament will today authorise massive, unspecified spending in our cash-strapped NHS?
Antonia Bance
I will not—I have only a little time.
It is not just the health system that will take on new costs. Our civil courts are groaning under the strain of years of Tory underfunding, although my right hon. Friend the Justice Secretary is doing a brilliant job of putting our court system back to rights. However, this Bill will impose new unfunded and unknown costs on our courts. It blithely assumes that judges and courts will be available, yet the waiting time for a family court case at the moment is 10 months. That just will not work for the Bill. How much will the extra spending on courts cost?
Antonia Bance
I will not.
Those are all reasonable questions, and this House deserves to have many more answers than it has so far been able to get. According to the Hansard Society,
“To table a money motion, the Government must therefore assess how much money will be required and have some idea about where the funding will come from, although it is not required to set this out in the motion itself.”
That information is not in the motion, so will Ministers make that assessment available and set out where the funding will come from? I am glad to hear we have a timetable for the impact assessment, but it would be good also to see the delegated powers memorandum, given the scale of powers delegated to Ministers in the Bill.
Alongside others, the Minister is a member of the Public Bill Committee, and I thank him and all members of the Committee for their work on behalf of this House, scrutinising and seeking wisdom. I particularly thank the Minister for upholding the neutrality of this Government and our party towards the Bill in his acts on the Committee and in this House.
Those of us with concerns will not push this resolution to a vote today. I know that colleagues are desperate for there to be procedural game playing, but there is no such thing; there are in principle concerns and questions about practicalities. I do hope for some answers to my questions.
Liz Saville Roberts (Dwyfor Meirionnydd) (PC)
Can we just state what is really quite obvious? This House has voted for further debate in order to make workable and legally watertight legislation, and with that debate will come a full understanding of the resources needed for both England and Wales. Of course, in Wales, health is devolved and justice is reserved, and we need to understand the implications for that.
What has been a bit of an eye-opener for me, as a member of the Bill Committee—it is, of course, a larger Bill Committee for a private Member’s Bill than ever before—is the sense of the way in which this place operates. We have been given the role of producing workable legislation as best we can, on the advice of witnesses—there is a part of me that would like the Committee to receive more witnesses, but I am very aware that we have to move ahead with what we have been charged with doing: namely, producing that workable legislation—but we will not arrive today, next week or after we have heard from our witnesses at a complete, perfect, already-made understanding of what we need to do to make correct and workable legislation. For those things to be in place today, the House would need estimates and information that the Bill Committee has been charged with providing, which it will not be able to provide until we have heard the advice from the witnesses we are calling forward to give us a sense of what the resource needs and associated costs will be.
It will then be the duty of us all on Report and on Third Reading to ensure that the money and resources are sufficient for the legislation to be workable. With that in mind, I support this motion.
Daisy Cooper
Members in this House who have spoken against the money resolution say they are doing so because they have so many unanswered questions about the costs. Does the right hon. Lady agree that if Members vote against the resolution, they will never get those answers? That is precisely why the Bill should move forwards.
Liz Saville Roberts
Let us imagine what the public would make of our role in this place if this legislation were to fall at this point.
Madam Deputy Speaker (Ms Nusrat Ghani)
Order. We are going to drop the speech limit to three minutes.
Anna Dixon (Shipley) (Lab)
Colleagues will know that I put forward a reasoned amendment on Second Reading. In that amendment, and in my speech in that debate, I set out some of my concerns about how the private Member’s Bill process does not allow for sufficient scrutiny to develop complex legislation on such a sensitive matter. Indeed, such a once-in-a-generation approach to suicide, death and dying and these changes need to be looked at independently and in a formal public consultation.
This House was given reassurances, both by the promoter of the Bill, my hon. Friend the Member for Spen Valley (Kim Leadbeater), and the Leader of the House, in the light of which some colleagues voted for the Bill on Second Reading to allow the process to proceed. As part of that, reassurances were given about an impact assessment, which would have included an estimate of costs. I am pleased that my hon. Friend the Minister has given assurances that an impact assessment is forthcoming, but we do not yet have it. As a result, we are very unclear at this point how much assisted dying would cost to implement.
I therefore seek clarification from the Minister and others involved on a number of questions. Will assisted dying be offered free on the NHS? How many people do we estimate will expect to exercise their right under the Bill? There are a wide range of estimates out there, based on overseas jurisdictions.
Anna Dixon
No; I have very little time.
How much will it cost for the additional doctors, nurses and other healthcare professionals? How much time will be required to do a proper consultation? What about the lengthy paperwork? Will new clinics be set up, or will existing facilities be repurposed? What will be the costs of the lethal drugs? What about the oversight by the National Institute for Health and Care Excellence and other regulators? What about the training for healthcare professionals involved in the process, and the cost of oversight by the chief medical officer and the Registrar General, and any new data systems required?
It is clear that palliative and end of life care is in desperate need of investment; some 100,000 people die each year who could benefit from end of life care but do not receive it. If assisted dying is to be implemented, it is essential that there is equitable and free access to hospice care, so how much additional funding would be provided to hospices for palliative and end of life care under this money resolution or from elsewhere?
I fully support this Government’s commitment to fixing the NHS, establishing a national care service and providing additional investment, as they have already shown, to hospices. However, I would like the Minister to provide clarification to assist our understanding because, given our inheritance from the Conservative party, I am concerned like others that funding for assisted dying risks diverting essential resources away from end of life care, other NHS services and social care. I look forward to the Minister’s response.
Jim Allister (North Antrim) (TUV)
There is no more important function for Members of this House than that of being the guardians of public money. It is very hard to equate the performance of that function with signing a blank cheque, and yet that is what we are being asked to do today. One thing is abundantly clear: if this Bill passes, it will bring with it a huge financial burden in perpetuity.
Jim Allister
I would be happy to do so in a moment.
It is quite clear that the measures will impose huge costs on the health and justice budgets. Given the provisions in the Bill, is it impossible for that not to be the consequence, so when the Treasury Minister produces the financial information, will he include current Government expenditure on palliative care and suicide prevention, so that we can look at and balance what we are spending? The Bill invites the Government to move from funding charities to prevent suicide to becoming facilitators and providers of suicide.
Madam Deputy Speaker (Ms Nusrat Ghani)
Order. Mr Allister, we must confine our remarks to the money resolution for the Bill.
Jim Allister
Madam Deputy Speaker, I was seeking to do that by asking the Treasury Minister to give us a comparison. What is this Bill going to cost our health service and justice system? How does that compare with what we are already spending on palliative care and suicide prevention? Those are pertinent questions and we need the answers.
Carla Lockhart (Upper Bann) (DUP)
It is mind-blowing that there is no money to pay for winter fuel payments or to support the Women Against State Pension Inequality campaign, yet the House is about to approve the provision of a bottomless pot of money to create a state-funded, gold-plated assisted suicide service.
Jim Allister
I agree. We all have our views on the merits of the Bill, but fundamentally we have a duty to our constituents to handle public money properly. In handling that money, we must know how much the Bill will cost. When it comes to that financial statement, it must not be fudged or opaque; it must be absolutely clear and it must—
Madam Deputy Speaker (Ms Nusrat Ghani)
Order. I must now call the Minister.
The Minister for Care (Stephen Kinnock)
I thank Members for their continued contribution to the debate. The Government are of the view that the Bill is an issue of conscience for individual parliamentarians and it is rightly a matter for Parliament, not the Government, to decide. The money resolution allows the Bill to be debated in Committee, where its detail will continue to be scrutinised. As I have said, the Government will also be assessing the impact of the Bill and we expect to publish an impact assessment before MPs consider the Bill on Report. I therefore commend the money resolution to the House.
Question put and agreed to.
Jim Shannon (Strangford) (DUP)
On a point of order, Madam Deputy Speaker. The right hon. Member for North West Hampshire (Kit Malthouse) made a comment that I feel impinged upon my integrity. I have spoken to the right hon. Gentleman and he knows what I am referring to. I underlined and highlighted that the Terminally Ill Adults (End of Life) Bill Committee went into private session; some 15 Members, who support the Bill, voted for the private session and nine Members, who oppose the Bill, voted against the private session. The record must be corrected about what the right hon. Gentleman said about the comments I made about that. Facts are facts; they matter to me, as does my integrity.
Madam Deputy Speaker (Ms Nusrat Ghani)
Thank you, Mr Shannon, for letting me know you would be making a point of order. The Chair is not responsible for the content of Member’s speeches, but I remind the House of the advice in Erskine May on the importance of good temper and moderation in parliamentary language.
Kit Malthouse
Further to that point of order, Madam Deputy Speaker. There was no intent in my remarks to undermine the integrity of the hon. Member for Strangford (Jim Shannon). I may have misunderstood his remarks, but he implied that the Committee was adopting some kind of veil of secrecy over our affairs and I was pointing out to him that, in my view, that was a misunderstanding of what we were attempting to do yesterday. I am sorry if the hon. Gentleman was offended, as he knows I hold him in great affection and I had no intention to do so.
Madam Deputy Speaker
Thank you, Mr Malthouse. I can see Mr Shannon nodding, so hopefully your apology has been accepted.
Terminally Ill Adults (End of Life) Bill (Second sitting)
Tuesday 28th January 2025
(10 months, 2 weeks ago)
Public Bill CommitteesTerminally Ill Adults (End of Life) Bill 2024-26 Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 28 January 2025 - (28 Jan 2025)
The Chair
We are now sitting in public and the proceedings are being broadcast. Before we begin, I remind Members to switch electronic devices off or to silent. Tea and coffee are not allowed during sittings. Before we start hearing from the witnesses, do any Members wish to make declarations of interest in connection with the Bill? No.
We will now hear oral evidence from Professor Sir Chris Whitty, chief medical officer for England, and Duncan Barton, chief nursing officer for England, NHS England. Before calling the first Member to ask a question, I remind Members that questions should be limited to matters within the scope of the Bill. I also remind Members that time is tight, so please keep your questions to the point. We must stick to the timings in the sittings resolution that the Committee has already agreed. For this session, we have until 10.05 am. Will the witnesses please briefly introduce themselves for the record? If you are to give an opening statement, please keep it short.
Professor Whitty: I am Chris Whitty, the chief medical officer for England, and I am also representing the chief medical officer for Wales. One statement, which is on behalf of Duncan and myself, and all the CMOs, is that we are completely neutral on the principles of the Bill, which we consider are entirely for society and therefore for Parliament. Although we are answering technical questions, we will not be answering questions of principle, because we feel that is a societal question. We have made it clear to the medical profession, however, that individual doctors should be able to make whatever statements they wish. Obviously, doctors have strong views on all sides of this argument, as members of society do.
Duncan Burton: Good morning. I am Duncan Burton, the chief nursing officer for England. For transparency, I will say that I am also a volunteer trustee of a hospice.
Naz Shah (Bradford West) (Lab)
Q
“But if any provision of this Act has not been fully brought into force before the end of the period of 2 years beginning with the day on which this Act is passed, that provision (so far as not already in force) comes into force at the end of that period.”
My question is: do you believe that it would be safe to implement this legislation if those provisions had not been fully put in place?
Professor Whitty: If this Bill is passed—I want to stress that; I will say it once, but assume it applies for all the answers I subsequently give—we will clearly need both: a period to make sure that there is technical guidance and legislation, via secondary legislation, because obviously the primary legislation is the Bill; and necessary training for people to be able to do this in an appropriate and dignified way, if that is what Parliament chooses.
Naz Shah
Q
Professor Whitty: That is an absolutely critical question, because it is very important that if the Bill is passed, all parts of society, of whatever ethnicity and of whatever background, have equal access to the Bill—or not, as Parliament determines. That will require adjustment in a variety of ways. Some can be done at a macro level—for example, making sure that everything is translated into the major languages spoken in the United Kingdom—but a lot of it will be to do with the individual interactions that doctors, nurses and other healthcare providers have with individual patients, which must take into account their own starting point, their own knowledge and, most importantly, their own beliefs.
Lewis Atkinson (Sunderland Central) (Lab)
Q
Professor Whitty: I will give my view, and it might be useful to get Duncan’s view on the nursing side, because nurses will often be heavily involved in these discussions.
I would divide the kind of training that is needed into two broad groups: training that is essentially normal medical practice but may need some variation, and things that are clearly specific to this Bill. Issues, for example, around mental capacity—as determined by the Mental Capacity Act 2005—are dealt with every day, in every hospital up and down the country; every doctor and nurse above a certain level of seniority should be able to do that normally. It may require some slight adjustment. There is an absolute expectation within the Act, for example, that the more serious the decision, the greater the level of capacity that someone needs to have. That is already built into the principles of the Act and the way that things are done. I would extend that to the management of end of life, which should be a normal part of medical and nursing practice—we will all die eventually, and that has always been part of medicine, and always should be. That training should be generic, but may need some adaption.
There will then be some specific things that will be necessary for people to understand the legislation, including, in some cases—if this Bill is passed—if they are to take part in the final part of prescribing drugs to patients. It is much more likely that a very large number of doctors and nurses may get involved in the very earliest stages, because someone may raise an issue with their GP, nurse or consultant, who will need to have the basic understanding for that. In my view, the more detailed later stages will require some specific training. I think there will be a gradation of doctors: those who are happy to have the general, initial conversation; those who are happy to have the structured conversation that follows; and a minority who will be happy to go on to take part in the final stages.
It is very important that the wishes of the patient are respected. That is the central point of this. We must start with what is good for someone in their last six months of life, and for their immediate family, but we must also make sure that the wishes of healthcare professionals around this area are absolutely protected, when it comes to conscience and to choice.
Duncan Burton: I am mindful that there are two groups of staff who would potentially be working in this service, if the Bill is passed, but also of the wider workforce. At 2 o’clock in the morning, when a patient wants to have a conversation with somebody about end of life, it is going to be a nurse with them, or a nurse in a care home, or a specialist nurse providing cancer care, so we have to think about the training and support that is required for them, be that around signposting or explaining where they can go to access more information. There is an important part about the entire wider workforce that we need to think about.
Clearly, for those people who are working in such a service, we need to think about the safeguarding elements, and how we make sure there is support through safeguarding training and confidentiality—particularly mindful that some patients may choose not to tell their families about this. We need to think about how we enable and support staff in managing those kinds of circumstances and navigating the legal requirements through the Bill. We need to think ahead about what we need to do in undergraduate training for doctors and nurses, and in the curriculum.
Lewis Atkinson
Q
Professor Whitty: You are absolutely right: it is a completely normal part of medical and wider nursing, and other practice, but particularly medical practice, to consider issues of consent and capacity. It can be that someone says they do not want treatment that is clearly going to be lifesaving. A very well-known example is that of Jehovah’s Witnesses, who choose not to have blood products. If they are bleeding heavily, that is an issue that could lead to the end of their life. Provided they understand that and they have capacity, that has to be respected.
The alternative way—the other thing that doctors have to do—is to give people advice before they have major operations, chemotherapy or other drugs that may in themselves lead to the end of their life, but which also may lead to a benefit. Explaining to people the risks and benefits, including the fact that they may lose their life as a result of the next stage—if someone is at high anaesthetic risk, that is not a trivial risk sometimes with operations—is a very standard part of medical practice that you do from the point that you qualify. Obviously, as people get more senior, they tend to be more experienced in it—and, as with most things, if you get more experience, you generally get better at it.
Sarah Olney (Richmond Park) (LD)
Q
Professor Whitty: If I am honest, I think it would be extremely difficult. If I may, I will explain why, because it is a really important question. Let us take cancer. For the great majority of people with the majority of cancers that are diagnosed tomorrow, the doctor who is seeing them will say, in all confidence, “You have cancer and I expect you to be alive not just next Christmas, but for many years to come.” The fact that they have cancer is not in itself a demonstration that they are going to die. In fact, the majority will not. Almost 80% of people with breast cancer diagnosed tomorrow will still be alive 10 years later, for example.
Equally, there are people who may not have a single disease that is going to lead to the path to death, but they have multiple diseases interacting, so they are highly frail; it is therefore not the one disease that is the cause, but the constellation that is clearly leading them on a path inexorably to a death at some point in the foreseeable future. Exact timings are tricky—we might want to come back to that. I therefore think it is quite difficult to specify that certain diseases are going to cause death and others are not, because in both directions that could be misleading.
Sarah Olney
Q
Professor Whitty: At the extremes —most people are at the extremes—it is very clear what is going to happen. For most people, you can say with confidence, barring some extraordinary accident like being hit by a car on the way out, “You’ll be fine in a year, even though you have heart disease, cancer or whatever.” At the other extreme, there are people who are clearly dying and will die in the next two or three days, and virtually nothing will change that reality.
What we are talking about in the Bill, of course, is a point between those stages, but people will definitely reach a point where there will be an inexorable and, importantly for the Bill, unreversible slide towards a point of death. People can make a reasonable central view, if they are experienced in a particular disease, about when the death is likely to happen, accepting that there is a spread around that. I am sure that the general public and Members of Parliament fully accept that this is not a precise science. This is a central view, and there is a big academic literature around this. Some people will die significantly earlier than they are predicted to; a small number will die very significantly later; and some people will certainly die a bit later or to some degree later. The central view is usually reasonably accurate—that someone is now on a pathway from which there is not going to be a return.
Kim Leadbeater (Spen Valley) (Lab)
Q
Professor Whitty: Duncan, why don’t you take the first bit and I will take the second?
Duncan Burton: In terms of looking for signs of coercion, all of our nursing and clinical staff have safeguarding training, which already looks at things like whether people are under financial coercion or other forms of abuse. That training is already in place and it is extensive across the NHS and social care. If the Bill is passed, we will need to look at how we strengthen that training in relation to spotting the potential signs of coercion in this space as well. Given that that mechanism is already in place, I think that would be an extension, so it is important that we factor that in. I am also mindful, given the scale of colleagues we have working across health and care, that the time between the Bill being passed and its implementation is sufficient that we enable everybody to receive that additional training, if it is required.
Professor Whitty: In terms of strengthening the Bill, as a practitioner, I was relieved that the decision was for the Bill—if it stays this way—to stick with the Mental Capacity Act, and that was for two reasons. First, that Act is used up and down the country by doctors and nurses every day; they know it and they understand it. Although, as you say, it is a large piece of legislation, it is one that people have worked through in practice multiple times. If you ask six or seven doctors, “Does this person have capacity?”, in almost all cases you will get six or seven identical answers, because people are used to using it.
It additionally has the advantage of being tested in the courts. That has gone as far as the Supreme Court, and the various ambiguities that were inevitably in the legislation have been clarified by senior judges. Therefore, to practitioners like me, it feels like a piece of robust and predictable legislation. Within the legislation, it is very important that there are some situations where you will need to call for additional assistance. For example, if someone has a co-existing mental health condition, you will probably want to ask a psychiatrist additionally whether that condition is interfering with the decision taken to the point that someone loses capacity for this very important decision. The level of capacity has to be reasonably high.
My own view is that starting this way is the sensible thing to do. That does not mean there could not be arguments for some additional points, but I cannot immediately—again, as a jobbing doctor—see ones where I think, “This is going to make a big difference.” The fact is that this is founded on a very established bit of well-used and well-recognised legislation.
Kim Leadbeater
Q
Professor Whitty: The further you go up in the seriousness of the decision, the more you would do that. For example, if you were setting a finger that had been broken, you are not going to wait until a psychiatrist has said that you can do that. Within reason, provided that someone gives consent, you will do that. You will be much more cautious about moving forward with things like open heart surgery or deprivation of liberty if you think there is uncertainty. It should be clear. For the majority of people, it is very clear they have capacity or very clear they do not. There is a relatively small—but important—number in the middle where that is less clear and where additional views are relevant, particularly where there is a question of co-existing mental health issues. The fact of the mental health condition does not in itself mean that someone does not have capacity, but what has to be taken into account is, “Do they have the capacity for this decision at this point in time?” That is how the Mental Capacity Act works.
Rebecca Paul (Reigate) (Con)
Q
Professor Whitty: As we have seen in covid, the NHS, like any service, can swing very fast if there is a need for speed. In this case, I think most people in society would say that the key thing is to get this right. Personally, I would rather it was not running against a timeline. You would not want it to drag on forever, because then you have uncertainty for everybody, but I think Duncan and I would both say that two years seems a reasonable starting point. With some things, it might take longer than that to work out how we are going to provide this in the most safe and equitable way—for example, in dealing with minority and other groups. We need to get all that right and, at least at first pass, get it as close to good as we possibly can.
Equally, we may find when we first start using the legislation that there are some things that we had not considered at the beginning, and therefore we need to go back and improve on them because we just had not thought about them in the first way through the gates; that is why I hope that some of the more operational issues are done through secondary legislation and regulation. Inevitably, that is true for many bits of legislation, but it is particularly important here.
I go back to my very first comment: the central person here is an average citizen in their last six months of life. What we do not want is a system very difficult for them to navigate so that they spend their entire last six months of life—if the Bill is passed and they choose to take account of it; they are going to be a minority—stuck in a bureaucratic thicket. We need to keep this simple. My view is that the best safeguards are simple safeguards. Overcomplicating usually makes the safeguard less certain.
Rebecca Paul
Q
Professor Whitty: I think that there is a big difference between the Act coming into initial force—that is, “This is now where the law is”—and the service being provided. On the second of those, I would argue against putting a firm deadline, with a reasonable expectation that the NHS and others should be involved in trying to make plans for this as fast as possible. But if the Bill is passed, we are going to have to sort out multiple different things to get this to work. If we were three months away from being able to get something sorted out, I would not want to have a situation where it all had to start the following day. I think that would make it much harder to provide a safe, fair and secure service.
Duncan Burton: In my understanding, the Bill does not call out the NHS specifically in terms of providing this service. A number of steps would have to be gone through to understand the implications—the operational and training implications, as we have already discussed—to understand the timeline required. For the reasons Chris has outlined and as mentioned earlier, when thinking about the wider implications for the workforce there would need to be sufficient time to be able to work through those.
Rebecca Paul
Q
Professor Whitty: That is a key question, and to me that does seem something that Parliament may want to debate. That is not a question for us, but it is a point of principle one way or the other.
Liz Saville Roberts (Dwyfor Meirionnydd) (PC)
Q
Professor Whitty: First, I have had quite a lot of conversations—not just with the chief medical officer for Wales, but all the other chief medical officers and indeed a much wider range of the medical profession; I wanted to feel that I was giving a central view of the medical profession in terms of the practicalities. My view is that, in a sense, the principles of the Bill are no different between England, Scotland, Wales and Northern Ireland, although the legislation would apply only to England and Wales were it to be passed.
The operational questions we have been talking about will be either subtly or importantly different between the different jurisdictions for a variety of different reasons. I do not think that is a problem, provided it is in secondary legislation and it allows the different jurisdictions to do things in the way that best suits their own set-up. Again, as we saw during covid, different nations will choose to reach the same end state using slightly different practical routes.
Liz Saville Roberts
Q
Professor Whitty: Yes. I think in principle it would be better to be as close as possible, but if there were important practical differences why it was not going to start on the same date, the more important thing would be to get it right rather than to get simultaneous timings.
Daniel Francis (Bexleyheath and Crayford) (Lab)
Q
I also heard what you said about the scaling of decision making, but within the Bill, in some of those scenarios there is no mandating; the word “may” is used rather than “must”. I want to understand your viewpoint on whether it would provide stronger safeguards if those parts of the Bill were tightened to include “must” rather than “may”, and if the reference to capacity were replaced with a separate definition of “ability”, as proposed in our amendments.
Professor Whitty: I am probably not the best person to ask about the exact drafting of the Bill in terms of “may” and “must”, but I can answer the second part of your question, which is really important.
If there were no Mental Capacity Act, there would be an argument, which has been used for a long time, that the Bill would have to define what was meant with a fair degree of clarity. It would not be able to do that with just one clause; there would have to be quite a lot of clauses, if I am honest. All systems of this sort are going to be imperfect. The reason why I think it is sensible to base yourself on the Mental Capacity Act is that it is well used and well understood in practice by practitioners every day. Having a system with two completely separate groups of assessment, one of which has never been tested in the courts or used outwith this Bill, would lead to a whole set of potential complications and ambiguities, which are not there at the moment because we have a well-tested mechanism through the Mental Capacity Act.
People should move away from the Mental Capacity Act with some caution, because I think that will cause as many problems as it solves. It is not clear to me what problem people are trying to solve by doing that, given that the Mental Capacity Act clearly makes the point that the more severe the decision, the greater the degree of capacity that has to be assumed before people can actually take that decision. That is the foundation of some of the disquiet that people have had, but it is central to how the Mental Capacity Act works in practice.
Dr Simon Opher (Stroud) (Lab)
Q
“reasonably be expected within 6 months.”
Is that in line with your thoughts on the matter?
Professor Whitty: I think that is a reasonable point in time provided that, in taking that period into account, Parliament assumes that we mean a central view that this is six months, although it might be before that and it might be after. Other times would be equally reasonable, but if you are going to choose one, then six months is reasonable. It is generally very predictable that someone is going to die in the foreseeable future, but predicting whether that will be in five months or seven months is a lot harder, and there would be some caution.
Notably, in the countries that have chosen to go down an assisted dying route—a variety of different ones have been chosen—a significant minority of people die before they actually get to the point where that occurs because there is uncertainty in both directions. I think that period is as good as any other, but I want people to be clear that this is not an exact science where you can say, for example, “On 20 August.” It is not as tight as saying that a baby is going be born on a certain date. It has a wider spread of uncertainty around it. In the overwhelming majority of cases, that does not mean that it will go on for months or years longer, but there will be some degree of uncertainty.
Dr Opher
Q
Professor Whitty: Duncan may wish to comment for nurses. For doctors, we should be very mindful of the fact that for some doctors, as for some citizens, this is a point of very strong principle indeed, therefore there will be a gradation of people feeling that they can personally be involved in it. I suspect that if they themselves did not feel able to do it—because of conscience or choice, or because they did not feel that they had the necessary skills—the great majority would have no problem referring on, but it might be an issue for some people.
Personally, my view is that we should be able to have the range, provided that people are aware in general that, if one person cannot provide it and then does not wish to discuss it, there are alternative routes. But that really is a matter for Parliament and if Parliament says, “No, actually, that is unfair on the patient, because then the patient is having to go through an extra step,” that is an alternative and perfectly reasonable principle. Parliament is going to have to balance those two principles; that is not for me as a doctor. I just think that that range of opinion needs to be thought through when people are coming to that final parliamentary decision.
Duncan Burton: If I could add to that, again, I think that bit about the wider workforce and how we would support them is really important. We have situations like this already. We have advice professionally around things such as abortions and working in embryo services and fertility, for example, so we need to make sure that the safeguards for our staff are really clear. As Chris has said, our staff will have a range of views and opinions on this, as will the wider public. So the work you do in creating this Bill is really important in terms of the advice that we give to people about signposting and having those conversations. Actually, our clinicians are having conversations every single day about the choices that people have at the end of their lives.
Sojan Joseph (Ashford) (Lab)
Q
Professor Whitty: I would hope that most doctors are capable of identifying that someone has some degree—or a large degree—of mental health distress, or mental health illness, if you wish. What not all doctors will feel comfortable doing is actually deciding whether that is sufficient to interfere with someone’s ability to make a decision with full capacity. That is where help from colleagues from psychiatry, and mental health more widely, is going to be useful.
But that should be good medical practice, in my view, under all circumstances. This Bill takes it to a high level of need because of the seriousness of the decisions being taken, but that is part of medical practice. Duncan will have discussed with senior nurses, when he when he was operating clinically, “Should we actually get an opinion from a mental health colleague”—either a community psychiatric nurse, if it is that kind of question, a psychiatrist or others—“to make that assessment?”
That is really the question, but I certainly would not want to be in a situation where the fact that someone with a terminal diagnosis will have some degree of low mood in itself just rules them out from any kind of medical intervention—this, or any other. That should not be the case. They have to have access to whatever the state and the medical profession are able to provide—again, obviously, depending on what Parliament decides on this particular Bill.
Sojan Joseph
Q
Duncan Burton: I think you are absolutely right—anybody working in stressful environments. If the Bill is passed, we will need to make sure that we have sufficient psychological support for nurses and doctors working in these services, as we do now for many of our nurses and other professionals working in these kinds of situations. People working in end of life, or cancer nurses, for example, often have psychological support to help them deal with some very difficult conversations with patients.
We would need to look at that and make sure that sufficient support was in place for anybody working in these situations. We would also need to be mindful about the wider workforce, given the issues from such a debate as this and how the decisions to signpost people on to services might create—for some people—moral injury. We do need to think about the support in place for those people.
Jake Richards (Rother Valley) (Lab)
Q
Professor Whitty: It is entirely a matter for Parliament, at one level, but I can give a view. It goes back to the point that Naz Shah and others made earlier: the situations that people find themselves in are extraordinarily different—culturally, where they are in their lives, where their families are and a whole variety of other issues. Only the clinicians dealing with that person will really know all the different factors at play. If there is a good therapeutic relationship, and you would certainly hope there was, they should understand a whole variety of things that are very difficult for people sitting around this table to predict, however wise you are—although I am sure you are extraordinarily wise, to be clear. That was not my point. My point is that this is very difficult and I could not, at this point, write down a law that would be helpful to someone dealing with a whole range of different scenarios in which they are going to have to have an end-of-life discussion.
My own view, for what it is worth, is that I would do fewer things rather than more. That is partly because simplicity is the key to really good safeguards, in my experience. If the safeguards are really clear and simple, everybody understands them—if you ask six people, “What does this mean?”, those six will give you the same answer. The more complicated you make things, the more room there is for ambiguity and uncertainty—because different things are playing in—and the more difficult it is for the patient, their family and the medical and nursing professionals assisting them, to navigate the system.
Without in any sense wishing to curtail what Parliament might wish to do, I would make a plea for simplicity wherever possible and for accepting the extraordinary variety of people’s lives, which may have unpredictable consequences in terms of the way the end of their lives plays out.
Jake Richards
Q
Professor Whitty: I would certainly recommend that this is done by guidance or in secondary legislation, which can be adjusted if it turns out that it is not having the desired effect. Two things can change: first, we can spot things we had not thought of in the first place, however far-sighted each of us is. The second is that medicine itself changes, the diseases people suffer from change and so on.
An Act has to be durable and that is why I have my view about secondary legislation and guidance, which have the ability to adapt in a way that primary legislation cannot. The fundamentals obviously need to be in primary legislation, but these kinds of issues are often done better in secondary legislation.
The Chair
I am very mindful of the time, as it is now three minutes past 10. This will be the last question of the session.
Jack Abbott (Ipswich) (Lab/Co-op)
Q
“we must not undermine the provision of good end-of-life care for all including the outstanding work done by palliative care clinicians”.
Do we take it, by implication, that you are fearful that this Bill could undermine good end-of-life care? In your view, how might we mitigate some of those risks in the Bill?
Professor Whitty: I will give a view and then Duncan will be able, as chief nurse, to mention the parallel bit of advice that said similar things. I think all medical, nursing and health professionals very strongly believe that palliative care and pain alleviation, which is not the same as palliative care but overlaps with it, and end-of-life care, which is also not the same but overlaps with it, are essential, and in some areas are not to the high standard that we would hope for. That would be a common view across the medical profession.
My own view and hope is that the Bill should not make the situation either better or worse. It changes one particular aspect in a very important way, but it seems to me that on the principle that we should be improving end-of-life discussions, which is where end-of-life care starts from, as well as supporting further the alleviation of symptoms and the provision of palliative care, there would be no disagreement from anybody in the medical or nursing professions, any other professions or the general public. That must be fundamental to how the Bill is thought about—
The Chair
Order. That brings us to the end of our allocated time with these witnesses.
Professor Whitty: Duncan, do you want to say if you agree or disagree?
The Chair
Q
Duncan Burton: I absolutely agree with that. This is, obviously, a decision for Parliament, but it is clear that there is increasing discussion in society around death and dying, and I think that is important. It is important that we have discussions and support people with their choices at the end of life, so anything we can do to increase that is important.
The Chair
I thank our witnesses, Professor Chris Whitty and Duncan Burton, on behalf the Committee. I also thank Committee members for their short questions.
Examination of Witnesses
Mark Swindells and Dr Andrew Green gave evidence.
The Chair
Q
Mark Swindells: Good morning. I am here from the General Medical Council. The GMC, as the independent regulator of doctors across the UK, does not have a position on what the law should be on assisted dying. Similarly to what the chief medical officer said, we view it as a matter for wider society and, ultimately, Parliament. Having said that, we have looked at the Bill and, were it to pass, we would obviously be willing to work on things like the statutory code of conduct that it talks about to make sure the implementation works as well as possible.
Dr Green: Good morning. My name is Andrew Green. I am a retired GP, and I chair the medical ethics committee at the British Medical Association. We had a big survey of our members in 2020 and, on the basis of that survey, we moved from opposition to neutrality. All that means is that we neither support nor oppose any changes in legislation. That position has enabled us to reach out to people with a wide range of views and produce policy that we believe has broad support, looking particularly at the areas where it impacts on our members. We have had very positive engagement with legislators throughout the United Kingdom and the Crown dependencies, with the aim not of supporting the Bill, but of making sure that if it goes ahead, it works for doctors and patients. We have always believed that those things go hand in hand.
The Chair
Thank you very much. For broadcast purposes, can everyone make sure that they are as loud and clear as possible?
Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)
Q
“No registered medical practitioner is under any duty to raise the subject of provision”.
What are your views on the compatibility of that element of the Bill with the principles under Montgomery consent?
Dr Green: Both of these items came about because of things that were in our policy, and we are pleased to see them in the Bill. You are right that assisted dying must not become just another tick-box thing that doctors mention to patients. That must not happen, and that is why we believe that it should not fall within those two Supreme Court judgements that you mentioned. But there is another side to that coin: we think that there are some circumstances in which doctors should be able to mention this to their patients.
I will just explain why that might happen. The consultation shows that some patients find it very difficult to bring up sensitive subjects with their doctors, even when those are the most important thing on their mind. Doctors are aware of that, and I hope that we get very good at reading between the lines of what patients say to get at what is left unsaid. In those circumstances, we need to be able to open the door for the patient, so they can go into a safe space and have those difficult discussions. That is what we are talking about here.
As a clinician, it is very difficult to know when to have those conversations. When we are battling with that internally, the last thing we would want is to feel the weight of legislation behind us, so please do not pass legislation that makes it harder for doctors to understand their patients. That is why it is important that in particular circumstances we should be able to gently raise the subject.
Mark Swindells: The GMC sets guidance on decision making and consent, as you will know. That is based on the existing law, including the case law on Montgomery, so it puts a lot of weight on the patient’s autonomy, the patient’s role and the doctor’s role in supporting that in the provision of information on different options, including the option of no treatment. Our guidance follows the law, so were the law to change, we would look at it and accommodate. We do not have a formulated view on what the eligibility should be, but we know the BMA’s stance.
Dr Shastri-Hurst
Q
Mark Swindells: We have not done a forensic legal assessment of that nature, but obviously Montgomery is in case law, and Parliament has the power to set primary law. I listened to what the chief medical officer said and what Dr Green says about how restrictive or otherwise that might be in terms of the doctor’s role with the patient.
Jack Abbott
Q
Dr Green: Obviously, it would be great if we worked in a system where doctors had all the time they needed to deal with their patients. I believe that the Bill mentions a duty to provide information from the chief medical officer, and having read the Bill, to me it seems very much like this might be in the form of a website or leaflet. We believe that it is important that patients should be able to access personalised information, and we would like to see an official information service that patients could go to, either as a self-referral or as a recommendation from their GPs or other doctors. That would give them information not just about assisted dying, but about all the other things that bother people at this stage of their life, and it would mention social services support and palliative care. It could be like a navigation service as much as an information service. That might address some of your concerns.
Sean Woodcock (Banbury) (Lab)
Q
Dr Green: You are right: all medical staff have safeguarding training, and of course patients make important decisions often with the influence and help of their family members. Usually this influence is helpful, and it almost always comes from a position of love. The point at which such influence becomes coercion is difficult to find out, but my experience is that it is rare. I would recommend that you look at what has happened in other parts of the world that have more experience with this, because they have it as part of their training modules. Certainly, we would expect capacity and coercion training to be part of the specialised training that doctors who opt in would receive. I anticipate that the general safeguarding training should be sufficient for other doctors, who would obviously only be involved at that very early stage.
Kit Malthouse (North West Hampshire) (Con)
Q
As I understand it, the General Medical Council already has guidance on dealing with assisted dying if it is raised by a patient, and how doctors should handle that. How easy would it be to translate that guidance—the process struck me as something that does not hinder but also does not enable—into something more informative?
Mark Swindells: It is important to note that our guidance on assisted dying is framed in the current law, so it guides doctors to explain that it is not lawful for them to assist their patient to die. It talks about the importance of explaining other available treatment options, including palliative care; making sure that the patient’s needs are met; and dealing with any other safeguarding matters. Oure guidance does follow the law, so if the law were to change, we would obviously attend to that. It is not framed quite as you are suggesting, so I do not think that would lift and shift into what the guidance would need to be for doctors if this were to pass.
Dr Green: I do not have any experience with what you are describing, but it would certainly make sense to look at best practice in other areas.
Kit Malthouse
Q
Dr Green: As a general principle, I do not believe that unnecessary barriers should be put in the way of communication. This is such an important area for patients that it is vital that they form a good, trusting relationship with their key medical adviser, who would usually be a doctor. I also have to say that at the end of life, we depend a lot on our specialist nurses— Macmillan or Marie Curie nurses—and it might well be that they are the person whom the patient trusts most. Please do not put barriers in the way of understanding.
Kit Malthouse
Q
Dr Green: Indeed. I believe that in New Zealand—and I think in the state of Victoria, but I would need to check that—there have been official reviews that have identified those concerns, and they are looking to review the legislation.
Danny Kruger (East Wiltshire) (Con)
Q
I would like a quick clarification from Dr Green. In terms of the survey, my understanding is that the British Medical Association’s official position is to be neutral. The majority in favour of neutrality—moving away from an opposed position—were junior doctors and those not working with the elderly and the dying, whereas the great majority of doctors who work in palliative care and work with dying people remain firmly opposed to a change in the law. Is that your understanding?
Dr Green: There were some variations between specialities; that is true, but within all specialities, there was a wide variety of opinion. It is that wide variety of opinion that the BMA has based its policy on.
Danny Kruger
Q
I have a question for you, Dr Green, on the delivery of the service if it is brought into law. Is it your understanding that the Bill mandates the NHS to provide an assisted dying service? I appreciate that it is not clear in the Bill. Nevertheless, it does authorise the Government to pay for it and it establishes this right. My question to you is this: is this a medical procedure that we are proposing to legalise, and should the NHS provide it? If the answer is yes, should that be a separate service within the NHS or should it just be part of general practice?
Dr Green: We have not taken a view as to whether it should be inside or outside the NHS. That is not for us to take. We do believe that it should not be any part of any doctor’s normal job to provide assisted dying. In other words, it should be set up through a separate service with a degree of separation.
We believe that is important for patients, because it would reassure patients who may be anxious about the service that it would not just be part of their normal care. It would reassure patients that the service they were going into had proper quality and proper audit attached to it. It would reassure doctors, because doctors who did not want to have any part would not feel that it was part of their normal job, whereas the doctors who wanted to go ahead would be assured of having support, emotional support and proper training. Also, it should, hopefully, reassure the providers, who would then be assured that it would not be expected of them just as part of their normal duty. We believe a degree of separation is very important.
Danny Kruger
Q
Dr Green: I think we are always concerned about resourcing, and I can only back up what Dr Whitty said about the importance of palliative care.
Danny Kruger
Q
Mark Swindells: I would agree with you that there certainly needs to be really clear guidance for doctors on that scenario. We have not taken a view on whether that needs to be in the Bill, in regulation or in the statutory code of practice. What I would say is that we would be willing to participate in the setting of that. It would be very important to listen to the view of doctors and indeed patients who might be interested in taking such a course of action, to understand their issues.
Danny Kruger
Q
Mark Swindells: I am not trying to duck the question, but because we do not take a general view on whether the Bill should pass or not, we have not taken an established view on the delivery mechanism for it.
Lewis Atkinson
Q
Mark Swindells: We do get inquiries from doctors who are concerned that they are doing the right thing when it might become apparent to them that a patient wants to travel overseas to access assisted dying. We have taken legal advice, and on that basis, we guide doctors that it is permissible for them to provide the existing medical records to that patient, as you might under a subject access request, but to be really cautious about going any further in terms of recommending that or assisting the process more than that. That is based on our understanding of the existing law in the Suicide Act.
Dr Green: Of course, that leads to a further issue. As we heard from Dr Whitty today, this measure may progress at a different speed in Scotland and England and Wales. We also have the Crown dependencies, which are some way further ahead than the mainland Governments on it. That raises an issue for doctors who work in England and Wales but treat patients in the Crown dependencies. We would want clarity about the legal situation regarding a doctor in Liverpool who is treating a patient in the Isle of Man, should the law allow assisted dying in the Isle of Man.
Lewis Atkinson
Q
Dr Green: I do not think I ever suggested that doctors should recommend assisted dying. If I did, I apologise—
Lewis Atkinson
Sorry—I meant the provision of information for someone.
Dr Green: The provision of information would be very useful, because in a situation where a doctor was unwilling to have an initial discussion with the patient, it would provide a way for the patient to get that information that was in no way obstructive.
Lewis Atkinson
Q
Dr Green: We have not taken an official view on doctors recommending it, but I do not think it was ever in any of our minds that doctors would be recommending it as a course of action to patients.
Lewis Atkinson
Q
Dr Green: I am reluctant to make a statement on that in this forum. We will go away and discuss it, and come back to you.
Naz Shah
Q
The question that worries me is, to be able to fulfil all those actions in all cases, without fear of mis-determining, the two doctors would have to be specialists in all the relevant diseases. For example, if somebody has a brain tumour, lung cancer, or a different type of cancer, would the doctor have to be an expert in that to determine that the person is terminally ill?
From the GMC’s point of view, would we find ourselves in a situation where doctors are working outside their professional competencies and expertise? From the BMA’s point of view, how do we protect doctors from finding themselves having to diagnose life expectancy for a disease they are not a specialist in, or to determine capacity when they are not a specialist in that, or to determine a lack of coercion when they potentially do not know the patient and do not have experience of that? Finally, when the next step is taken and the court has to rely on the testimony of these doctors to protect the patient, can those testimonies safely be relied on by a court and by a judge, given all those concerns?
Mark Swindells: There are quite a few points there—let me work through them backwards. We have some existing guidance for doctors when they act as a witness—for example, in a court setting or a medical legal situation—that talks in general terms about the importance of being an appropriate witness. Inherent to that is some expertise and understanding of the topic they are assisting the court on. I suppose that those sorts of principles would be ones that, if the Bill is passed in this form—I say again, the GMC does not have a view on what the delivery mechanism or the Bill should look like—are applicable points from the guidance, which would read across.
You heard from the chief medical officer his caution with regards to going with a condition-based assessment for this sort of thing. We would not have a particular view on that, but there is one thing that I want to highlight. The Bill talks about specialism in the context and seeking advice from a psychiatrist. On the specialist register held by the GMC, there are five specialisms connected with psychiatry, so some clarity—whether the Bill is intended to cover any, or a particular one, of those—would be good.
I know that it is not restricted in the “independent doctor” and “coordinating doctor” roles in the Bill either, but we are aware that when doctors pursue a specialty, in the sense that they become accredited and go on to our specialist register, that does not fix in time their individual scope of practice or expertise. Many doctors will go into slightly different fields, or focus on one particular area, so one cannot necessarily rely on the specialist register as a current indication of a doctor’s area of competence in that way. On what the precise delivery mechanism is and the point you make about whether either of those two roles of doctor have seen the person, because we have not taken a view on what the law should be, we have not taken a firm view of any process or eligibility, but I note the point.
Dr Green: If I may, I will clarify my previous answer, having had a little more thought. I do not believe that it is ever appropriate for a doctor to recommend that a patient goes through an assisted dying process. My internal thoughts on whether it should be on the face of the Bill, contained in guidance or contained in good medical practice was the point that I was unsure about.
Lewis Atkinson
indicated assent.
Dr Green: With regard to the specific questions, no, I do not believe that a doctor has to be a specialist in the individual disease at stake to advise a patient about prognosis. I can only refer you back to what Dr Whitty said: that in the majority of cases, it is fairly clear—this applies to capacity, too—but in some cases, it is not so clear. What is important is that the doctor has the ability to seek further advice if they need it; it is not always required.
Dr Opher
Q
“registered medical practitioner who is unwilling”
to go forward with the assisted dying request
“must, if requested…refer…to another registered medical practitioner”.
Are you happy with that clause?
Dr Green: No, we are not, because we know from our survey that some doctors feel very strongly about this. The word “referral”, to a doctor, means writing a letter or communicating with another doctor to see, but some doctors would find themselves not able to do that. For that reason, we believe that there should be an information service for the doctor to direct to. There is a particular problem with the word “referral”. Doctors would not be able to be obstructive; they have the same duties under good medical practice as they do, for example, with termination of pregnancy requests.
Dr Opher
Q
Dr Green: We have not taken a view on the qualifications of the doctors involved. We had discussions about what grade they should be, for example, but we took the view that their skillset and training was more important than their grade or position.
Dr Opher
Q
Dr Green: We did not take a view on that. We thought that training and experience was more important.
Sarah Olney
Q
Dr Green: That is why it is important that doctors should be able to opt out at any stage of this. There are doctors who would find it difficult to do that, and it is important that their position is respected.
Kim Leadbeater
Q
Dr Green: What would happen is that the doctor would provide the patient—through their receptionist, through leaflets or through a telephone number—with somewhere they could get the information. You cannot just abandon a patient. They have to be sure that the patient has the ability to do what the patient wants to do.
Kim Leadbeater
Q
Dr Green: Yes. It is the “referral” word that is problematic for us.
Kim Leadbeater
Q
“respect competent patients’ right to make decisions about their care, including their right to refuse treatment, even if this will lead to their death”.
I am interested in how that fits in with those very difficult conversations. When a patient executes that right to refuse treatment, are those cases logged? Are they monitored or reported on?
Mark Swindells: There was an important piece of case law—I think in the 1990s—that clarified that a patient refusing treatment and subsequently dying is not an act of suicide. You are right that our guidance talks about the importance of a doctor explaining to the patient about the likely course of action in terms of the option for no treatment. Again, that is intertwined with the Mental Capacity Act 2005, and puts a lot of autonomy in the space of the patient, along with the consent case law that we covered before.
On the previous point about referrals, our guidance is similar to what Dr Green was saying: in the case of conscientious objection—for example, on abortion—the important point is that, from the patient perspective, they are not left with nowhere to go. If that assists, that may be a principle that helps and reads across.
Kim Leadbeater
Q
Mark Swindells: Yes. It would be important for the patient’s records to cover the points of consent and that the doctor has recorded that they have interacted with the patient that way. I do not believe it is centrally held or collated in any sense like that, but I may be wrong.
Jake Richards
Q
Dr Green: Yes, with the exception of the referral.
Jake Richards
Thank you. I just wanted to clarify that.
Dr Green: Of course, we would regard much of clause 4(4) as normal care in any case.
Jake Richards
Q
Dr Green: As Dr Whitty said, I think simplicity is the key here.
Liz Saville Roberts
Q
Dr Green: In terms of the cross-border issues?
Liz Saville Roberts
Yes.
Dr Green: I think the concerns are that patients, particularly those from the Crown dependencies, might be looking for some things—for example, report on life expectancy—from doctors on the mainland. I think it is clear that if a doctor travelled to the Isle of Man or Jersey to do the work there, the GMC would be happy for them to do so, but we would want a clear understanding that they would not be at risk of any other legislative problems—from the DPP, for example.
Liz Saville Roberts
And of course legislation is progressing in Scotland, which has different definitions from the legislation that we are discussing here.
Dr Green: Correct.
Liz Saville Roberts
Q
Mark Swindells: There are aspects in which the law will differ, including on capacity. As a UK-wide regulator, we have managed to attend to that in our guidance, so that doctors are as clear on their responsibilities as possible when they lie either side of a devolved border. There is a nuanced point with the Crown dependencies. In law, we are a UK-wide regulator, and we know that the Crown dependencies and Gibraltar will choose to use doctors who are on the GMC register. Officially, we do not legally cover those areas, but it does give us some regulatory purchase there. If a doctor wishes to remain licensed to practice on the GMC register, there is a commitment to follow our professional standards.
Sojan Joseph
Q
Mark Swindells: We do not hold data. I have seen the coverage of the Bill and the uncertainty. I think we would agree with a lot of what the chief medical officer said to you about the stepped decision that a doctor will make, depending on the importance of the situation. We try to capture that in our end-of-life care guidance. We also agree with the point about a doctor giving a central estimate. In the guidance we talk about, for example, issues with taking a second opinion where there is a greater degree of uncertainty, and the importance of doctors keeping up with the latest clinical knowledge on the efficacy of different treatment courses to come to that determination. We would agree that there is inevitably a degree of uncertainty in the central ground that the chief medical officer was talking about.
Kit Malthouse
Q
Mark Swindells: I do not believe that we use the word “refer”, but I will double-check. The word “referral”—this is part of the BMA’s position—has a particular meaning in the world of medicine. We talk about the importance, from a patient perspective, of not being left with nowhere to go, so there is some professional responsibility on the doctor to guide.
Kit Malthouse
Q
Dr Green: We would expect that to be done with sensitivity.
The Chair
Order. We have come to an end, but you may complete your sentence, Dr Green.
Dr Green: That was my complete sentence.
The Chair
Excellent. That was perfectly timed.
That brings this session to a close. On behalf of the Committee, I thank the witnesses: Mark Swindells, assistant director of standards and guidance at the General Medical Council, and Dr Andrew Green, chair of the medical ethics committee at the British Medical Association.
Examination of Witnesses
Glyn Berry and Professor Nicola Ranger gave evidence.
The Chair
We will now hear oral evidence from Glyn Berry, via Zoom—hello and welcome—and from Professor Nicola Ranger. We have until 11.25 am. Will the witnesses please introduce themselves?
Glyn Berry: Good morning. My name is Glyn Berry. I am a palliative care social worker and a lead allied health professional. I am co-chair of the Association of Palliative Care Social Workers.
Professor Ranger: I am Professor Nicola Ranger, chief exec and general secretary of the Royal College of Nursing. Previously, I was a chief nurse in acute hospitals for 10 years.
Rebecca Paul
Q
“There is a risk that without a more sustainable model of funding for palliative care, many people will choose an assisted death, as the only way to escape from unbearable suffering.”
Can you elaborate on why you say that?
Glyn Berry: Yes. As experienced social workers, working within the realms of a society that is quite often split into “have” and “not have”, we already see the despair and the difficulties that people encounter with inequitable care in palliative care services. We know that a lot of services are delivered by charities as well as statutory agencies and the trusts, and we know that the funding for palliative and end-of-life care is a real issue and has been heading that way for some years.
We would hate to see what has been happening in other countries in which assisted dying is already in place, where people feel that they have no option other than to apply for assisted dying, because they do not know what else might be out there for them. That is the role of a social worker when we work with our patients: we look at the bigger picture, not just at what is happening clinically. Obviously we depend hugely on our clinical colleagues and expertise, but our specialism, if you like, is to look at what else is out there for a patient—and for their family and friends, because they are as much a part of the patient’s journey as the patient themselves.
We also know that palliative and end-of-life care is hit and miss in terms of what people can access. Marie Curie reporting in 2024 showed that there are massive disparities in terms of better care for people at end of life or with a palliative condition, and they have a significant effect. What we say to people is that we will help them to live as long as they can as well as they can in palliative and end-of-life care situations, but that is really difficult when the resources are not there and things become a huge priority.
Rebecca Paul
Q
The Chair
Order. We are going slightly off topic, so could we have a brief answer?
Glyn Berry: It would be something that is equitable for everybody. At this moment in time, it is not. As I say, some people get it and some people do not. A sustainable model would give fair access to everybody.
Tom Gordon (Harrogate and Knaresborough) (LD)
Q
Glyn Berry: We work very closely with clinicians and other health professionals. We talk about a multidisciplinary approach, because a person is not just two-dimensional; everything about their life needs the input of others in these situations. As social workers, our expertise and strength is in being able to ask difficult questions and really dig into people’s thoughts, feelings and opinions, giving them an opportunity to say things that sometimes they have never said in a whole lifetime. Other areas are around assessing capacity and giving people the option of knowing that there is not just one way of doing things.
I have worked in a hospice setting for the last six or seven years. I see daily how social workers contribute to the wider MD team in terms of safeguarding, capacity and applications for deprivation of liberty, but we also do the psychosocial aspect of palliative and end-of-life care. We sit and talk with patients, we do advance care planning and we deal with practical aspects such as supporting the arrangement of funerals. For families in which the parent or primary caregiver is the person who is ill, we will work with external statutory agencies like local authorities to give support where there may be children or vulnerable adults who are being cared for by the patient, to have provision put in place for after the death of the person. We also provide pre-bereavement support for both the patient and the family, and post-bereavement support for the family.
We have quite an extensive skills catalogue to support patients and families, but one of our biggest skills we have is in communication and in not being afraid to go where other professionals may feel uncomfortable going. Having conversations about people wishing to end their life is not a new thing: we have those conversations quite regularly.
Tom Gordon
Q
Glyn Berry: In our association, we have a list of recommendations. We are very conscious that the Bill is very heavy from a clinical perspective. There are a number of things. We do not feel that the decision and assessment should be all on the shoulders of a health professional, the clinician. Some clinicians are fantastic with assessing capacity and being aware of the safeguarding aspects of situations, but not all are, and we feel that our expertise lies in that particular area.
When we look at the overview of the process set out in the Bill, it is very, very clinical. Nowhere does it talk about the clinician exploring the other aspects of a person’s life; it is very much around the clinical aspect, and quite rightly so, because these are experienced clinicians. We feel that we should be involved in these decisions from the capacity and safeguarding aspect, but also in seeing whether there are things we can do to help the person make a more informed choice. If their decision to take their life is based on the fact that they do not have secure housing, that their benefits or finances are all over the place, that they do not want to be a burden on their friends or family, or indeed that they have nobody at all, those are areas that are very familiar to us in our daily practice. We therefore feel that we are well placed to support the clinicians in the whole process.
Tom Gordon
That was a really comprehensive answer. I think the key point that you touched on is the multidisciplinary approach.
Juliet Campbell (Broxtowe) (Lab)
Q
Professor Ranger: I think there is something really important about having a big difference in the beginning with regard to palliative care and assisted dying, and pain management. It is essential that those two things are slightly separated, because it would be heartbreaking to think that pain management was the primary reason that someone wanted to be assisted to die. We should be able to control and support someone’s symptoms and pain.
I think the primary thing with regard to being referred to another organisation is autonomy. I absolutely agree with what was said earlier: you would want anyone who is considering assisted dying to be slightly separated out of their normal clinical pathway, so it is not part of mainstream care for someone in a hospital or an organisation. There is something really important about separating that out, both in the discussions around the decision making and in any care involved in assisting them to die. I think those two things do need to be separated.
Juliet Campbell
Q
Professor Ranger: Well, you would not really want any clinician to push this view on any patient. It has to come from the person themselves. That is the key thing around capacity and autonomy. I do not think that people should ever say to a patient or an individual, “Is this something you have considered?” It has to be led by the patient.
Dr Marie Tidball (Penistone and Stocksbridge) (Lab)
Q
Professor Ranger: It is vital that any of those barriers be removed and that we always maintain outstanding care at the end of someone’s life. The reality is that the majority of palliative care is given by nursing staff, whether it is in the community, in someone’s home, in a hospice or in a hospital. It is key that it be an expertise and a specialist practice in which someone has extra training and extra education. The skills of listening to patients, advocating for them and ensuring that they are pain-free at the end of their life—these are skills that nurses have now, and it is vital that our nursing members maintain them. They are often the one a patient will speak to at 3 in the morning when no one is there.
As Glyn said, it is vital that the wider team be included in the Bill. The Bill talks about the guidance and recommendations being for the chief medical officer, but I think it is absolutely vital that the chief nursing officer be a key part of the guidance and the drawing up of any care, because even in these circumstances it is nursing staff who will give the majority of the care.
Dr Tidball
Q
Professor Ranger: Safeguarding is part of our professional responsibility now. Whether it is for a child, an adult or an elderly person, part of our role is to be vigilant against financial misconduct, physical abuse and mental health abuse: any of those things is a responsibility of every nurse now. It is a very good and simple process. You do not have to investigate or give a judgment; you need to refer it to be investigated. That takes the pressure off an individual clinician. Our job is to be vigilant and to refer safeguarding anywhere we think that there is any form of abuse. I think that that process would remain and could be part of how we do things now.
Dr Tidball
Q
Professor Ranger: We would want more support. I am not going to say that we always get it right. Sometimes things happen that we miss and we do not report. I cannot say that we get it right 100% of the time. When the Bill talks about education and training for medical staff, it is absolutely vital that nursing staff are included because we will need to be vigilant around anyone feeling they are a burden.
The Bill would add other skills that we want to make sure that nurses are included in. Education for medical staff is absolutely pertinent for nursing staff, so that nurses build on skills they already have. There will be a difference between the care of someone wanting assisted dying and palliative care. Those are two slightly different skills and it is really important that they are not always lumped together. Being involved in assisted dying will require a specialist skill and specialist training, and we would very much want nursing to be included within that.
Dr Tidball
Q
Professor Ranger: I do. They are professionals, and I believe they would be able to.
Jack Abbott
Q
Secondly, what level of training would that person need in terms of time? We have, for example, been talking about a two-year process. If this new role came into effect, how long would that person need to be trained for to fulfil it adequately? Thirdly, do you have a sense of how many of these professionals we would need to make this a functioning system? Those are three separate questions.
Glyn Berry: To answer the first question, we feel, for the reasons I outlined earlier, that the role of an approved palliative care professional would sit beside the role of clinicians, balancing clinical and social observation and assessment.
In terms of the training, we, as social workers, already have continuous training opportunities to become best interests assessors, practice educators and approved mental health practitioners, so we envisage that the training would very much be along those lines. Doing those roles currently requires a course of training at university.
Our thoughts, at the moment, are that that would be for palliative care social workers, whether they are in charities, trusts or local authorities, or are independent, because that is where things sit with us at the moment and we know our roles. We like to think that it would roll out to other professionals, however, because assessing capacity is not specifically the role of the social worker; other professionals are able to, and do, complete capacity assessments.
It is quite difficult to answer your question in terms of numbers at the moment. If we were talking specifically about palliative care social workers, we currently have around 200 members in our association, but there will be other people out there who are not members and we do not know who they are. It is a role that could expand.
One of our other recommendations is that palliative and end-of-life care, as an aside to your question, is also brought into qualifying roles for people in training, such as doctors, nurses and allied health professionals, as well as social workers. We could see that happening in the future.
Kim Leadbeater
Q
I want to ask a bit more about what this end-of-life conversation looks like in your experience, because you are absolutely right; of all the people who are spending time with patients in their last few months of life, it is often nurses and palliative care social workers. You have a really important role to play.
I am also interested in what this would look like in reality. There has been talk of a kind of separation of palliative care and assisted dying, but, actually, I think we should be looking to embrace a holistic approach to end-of-life conversations and end-of-life care, which is what has happened in other jurisdictions. You might have a patient who has signed up for assisted dying but never does it because they have good palliative care and they work with their palliative care experts and specialists. Therefore, I think it is important that we do not try to separate these things.
I would like your views on that, but I think that one of the strengths is that having these conversations about death, about dying and about end of life is a really positive thing. Your members have an important role to play in that, so could you talk a little bit about the holistic approach that your members take?
Professor Ranger: You are right regarding the conversations and the care around dying. Having those conversations with people around pain management and symptom management is particularly the role of palliative care nurses. With assisted dying, I think the conversation is sometimes slightly different. It is talking more as a nurse in some ways, because the primary reason that assisted dying is often a discussion is a lack of autonomy, not pain. Therefore, the conversation generally tends to go in a slightly different way.
Symptom control, and being scared of pain, is understandable, and we absolutely have the ability to get that right for people, but when it comes to seeking assisted dying, the primary reason is usually autonomy, rather than pain and fear of dying. Therefore, in a practical way, I think an experienced nurse or doctor will start to gauge the difference in those conversations, because they are different. I think it is about being really clear around those conversations and really listening to what people have to say, and then having a way to be able to ensure that what an individual wants is something that you have got, and that you listen to.
I absolutely agree with Glyn about safeguards and all the things that we absolutely need to make sure are there, but the whole point of assisted dying is not to be paternalistic, but to respect autonomy. Whatever safeguards we put in with that, we have to be really careful not to ignore that right of autonomy, which is primarily what this Bill is trying to preserve.
I think it is about being really vigilant and listening. A primary role of a nurse is not to advocate their personal view, but to really listen to somebody else and to ensure that what they want is pursued. In all that discussion, it is really important that that does not get lost.
Kim Leadbeater
Q
Kim Leadbeater
Yes. It sounds as though you are saying that your professionals are trained to have those conversations, which is very reassuring. Glyn, do you want to add anything?
Glyn Berry: Just to say that I absolutely agree with Professor Ranger. My experience of working with palliative nurses, and nurses in general, is long, and I have historically had exceptionally positive experiences and continue to do so. I think that we learn from each other, and it is really important that we can have those conversations with the person and ask questions that they might never have been asked before, such as, “What is it that you want?”
Professor Ranger is absolutely right in terms of autonomy and the person having control, because once that diagnosis is given, it can be a downward spiral for a person and they feel that they lose control. Patients and families talk about that—about having no control over what is happening. In effect, that is true in terms of what is happening in the disease or illness trajectory, but it is so important to remind a person that they are still the person that they were before that diagnosis, that they will continue to be that person, and that they still have a voice. In both our roles professionally, and alongside other clinicians, that is what we seek to do all the time. That is why a multidisciplinary team approach is so important.
Ultimately, we could find that, once you have asked all the appropriate questions and you have put potential safeguards in place following conversations, a person may not choose that particular point to end their life—as you mentioned, Kim—and may continue to live to the end of their natural life.
Sojan Joseph
Q
Professor Ranger: Yes, we would want to see more support and protection for nurses. Of course, in the exploring of assisted dying legislation in Scotland, the second clinical decision maker is a nurse—so it a doctor and a nurse, whereas in England and Wales we are looking at two medically qualified practitioners. We absolutely want to make sure that the skills and support is there for nursing staff, and the ability—as I heard our medical colleagues saying—to not be involved in assisted dying absolutely has to be supported. It cannot be an expectation of the role; it has to be something you choose to proactively take part in as a conscious decision. It cannot ever be just an expectation of a nurse. We are absolutely adamant about that. The Bill cannot just support the needs of medical staff—nursing absolutely has to be included within that, both in skills and support.
Kit Malthouse
Q
Professor Ranger: It is difficult. If I am honest, we have probably not explored that enough within our thinking as a college. We know what we would not want to see, which is a situation where there is an expectation that it becomes part of a pathway. It has got to be something you actively seek and opt into. I think how that is administered probably requires more thought, if I am honest, but I would not want to see it becoming an expectation of a pathway, because then the pressure on the individual may change. That is something we need to safeguard against.
I am worried that we should not make it so bureaucratic for the individual that it becomes impossible to have their autonomy respected, but how that happens is something that needs further exploration. We would fully support making it as clear and unbureaucratic for the person as humanly possible. But we would not want to see it as a sort of pathway within our current setting, because there could then be a sense that this is something that is externally influenced rather than being something that someone actively seeks for their autonomy.
Danny Kruger
Q
Professor Ranger: It is difficult, but in my experience there are ways to try and get people palliative care, whether that is, as was said earlier, via other organisations outside the NHS and within hospice care. There are ways through the current routes to get people the care that they need.
Danny Kruger
Q
Professor Ranger: I do not think it is as good as it needs to be. We know that it is sometimes hard for people to access care. We know the struggles regarding hospices. We know far too many people die in hospital. We know there are real challenges in social care and the health service. I cannot say it is not without challenge.
Danny Kruger
Q
Professor Ranger: When you put it like that, it could be possible, but we would want to strive to have a system that does not leave anyone in distress.
Danny Kruger
Q
Do you think—I cannot decide for myself what the answer is—it should be possible for a care home director to exempt their whole service, that care home and the people who work in that care home, from being involved in assisted dying? That is where people live, after all. If somebody is having it there, it could affect the entire atmosphere of the place, and the work that all of the people there have to do. Do you think they should be protected as an organisation?
Professor Ranger: Particularly for nursing homes, I think that would be difficult. How and where people end their life probably needs further thought and further explanation. There is something about being really clear— if you are the leader of that nursing home, we would have to explore your ability to be able to advocate for the care that you want to be able to give in that nursing home. All of these practical things need further exploration.
It is difficult, because for someone who wants to end their life, if that is their home, they may want to be there. It is all of these practical things that probably need further thought and exploration, because I think it could be argued either way.
The Chair
Q
Glyn Berry: I do not think so. I think that the last question around care homes was a really good one. I am already thinking about the implications for registrations with the Care Quality Commission and what that would mean in terms of the process and the protection of staff, residents and families. It is a really helpful question to think about.
The Chair
That brings us to the end of the time allocated for the Committee to ask any questions. I thank our witnesses on behalf of the Committee, Glyn Berry, co-chair of the Association of Palliative Care Social Workers, who appeared via Zoom, and Professor Nicola Ranger, chief executive and general secretary of the Royal College of Nursing. Thank you all very much indeed.
Terminally Ill Adults (End of Life) Bill (Sixth sitting)
Thursday 30th January 2025
(10 months, 2 weeks ago)
Public Bill CommitteesTerminally Ill Adults (End of Life) Bill 2024-26 Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 30 January 2025 - (30 Jan 2025)
The Chair
We are now sitting in public and the proceedings are being broadcast. I remind Members to switch off any electronic devices. We will now hear oral evidence from Alex Greenwich, MP for Sydney in the Parliament of New South Wales, and from two witnesses joining via Zoom: Dr Chloe Furst, a dual-trained geriatrician and palliative care physician in South Australia and a board member of Voluntary Assisted Dying Australia and New Zealand, and Professor Meredith Blake from the University of Western Australia. Could the witnesses briefly introduce themselves for the record, starting with Alex Greenwich?
Alex Greenwich: My name is Alex Greenwich, Member for Sydney in the New South Wales Legislative Assembly, and I introduced our voluntary assisted dying laws.
Dr Furst: Hi, nice to see you all. I am a geriatrician and palliative care specialist in South Australia. I have been quite instrumental in the implementation of South Australia’s voluntary assisted dying laws. I am a practising practitioner with experience with over 150 patients.
Professor Blake: Nice to see you all. I am a professor of criminal law, and health law and policy, in the law school at the University of Western Australia. I have been writing, researching and presenting in the area of end-of-life choices for about 25 years.
The Chair
Before calling the first Member, I remind all colleagues that questions should be limited to matters within scope of the Bill. We have to stick to the timings set out in the programme motion. The first session will finish at 12.30 pm, so can we stick to the points and keep them as short as possible, please? Members who wish to ask a question have indicated that, and I will call them in no particular order. I will start with Simon Opher.
Dr Simon Opher (Stroud) (Lab)
Q
Dr Furst: The medications are completely effective. I have not experienced any failures. One of the things I feel quite comfortable reassuring my patients and their families is that this medication absolutely works.
In terms of oral administration—the default option in South Australia unless the patient cannot consume the medication or has problems with absorption—it puts them to sleep within a couple of minutes. They are heavily sedated, as if undergoing an anaesthetic, and then death ensures—that is, the heart stops and respiration stops. For about 95% of patients, that happens within about half an hour. There is a small, small percentage of patients who will continue to be sedated but circulation will not cease for some hours after that. We warn patients and, more importantly, their families that this may be the case, and that is an enzymatic issue.
The medication it is highly effective. Personally, I have not had any experience where patients have had complications—vomiting, respiratory distress or any other concerns. Certainly in South Australia, those have not been issues that have been reported to us. I think there have been a couple of cases of vomiting elsewhere, but the medication has worked in all cases, as far as I am aware, around Australia as well, so this has not been an issue.
IV administration is also highly effective. By the time the medication has been administered completely, the patient is deceased.
This works—it is peaceful. Patients say to me, “I want to go to sleep and not wake up,” and that is absolutely what happens. It is a very peaceful death.
Dr Opher
Q
Dr Furst: There have been no failures of treatment in South Australia, as far as I am aware. I am not aware of any other particular ones around the country that have been heavily broadcast to us.
Naz Shah (Bradford West) (Lab)
Q
Dr Furst: Every legislation within Australia is slightly different. For South Australia and Victoria, you are correct—well, there is pretty much no obligation all around Australia for a doctor to be present for self-administration. The reason for that is to give individuals autonomy over their death, and over the time and place of their choosing. We in South Australia do touch base with what we call the individual’s contact person to understand if there have been any complications and to check in after the death. A large number of our patients, though, will seek out support from a voluntary assisted dying nurse navigator, who is often present in the house just as a support person. We do also have a lot of feedback from them as to any complications, but the doctor often, or a nurse, will come at a later time to declare life extinct.
The reasoning was that we did not think that there would be complications and we wanted to give people autonomy. We work on a permit system in a lot of jurisdictions in Australia, so people have a permit; they get given their substance and they can take their substance at a time of their choosing. They might have the substance in their house for weeks or months, potentially. Again, there is no obligation to follow through with taking that substance, which we also think is quite important. We know that in Australia, about 30% of patients who have a permit or who are approved for voluntary assisted dying actually decide that they do not want to consume the substance, but it is about giving them that choice and autonomy, and the strength to maybe pursue other lines of therapy.
Naz Shah
Q
Dr Furst: I am in South Australia, but a recent survey by Palliative Care Australia surveyed over 900 palliative care specialists, and more than 80% of patients receiving voluntary assisted dying are actually getting combined palliative care and voluntary assisted dying. In our legislation in South Australia, there are key provisions for the monitoring of the funding to palliative care to ensure that no palliative care funding is diverted to voluntary assisted dying, but we feel very strongly that palliative care and voluntary assisted dying should go hand in hand. That is a feeling that is being seen around the country now. Palliative care physicians who are finishing off training now see voluntary assisted dying as part of their core business. It is no longer seen as something that should be provided by separate practitioners. It is really becoming quite integrated.
Professor Blake: I am coming in from Western Australia. We were the second jurisdiction in Australia to introduce voluntary assisted dying laws. Ours have been operative since July 2021, so we have had the opportunity to collect quite a lot of data. Year on year, the number of people utilising voluntary assisted dying in Western Australia is increasing. In the year 2023-24, there were 292 deaths by voluntary assisted dying, which represented 1.6% of WA deaths. I agree with Chloe and confirm her view around the palliative care side of things: 83.8% of those persons who accessed voluntary assisted dying were also accessing palliative care.
Sarah Green (Chesham and Amersham) (LD)
Q
Dr Furst: It has been a journey, certainly. Victoria started their voluntary assisted dying in 2019. I would be lying if I said that the palliative care community were completely on board with it at that point, but over the last five to six years there has been a real shift in mentality. We have seen that they can go hand in hand. Palliative care is about end-of-life choices. Voluntary assisted dying is about end-of-life choices. It is about putting the patient and the individual front and centre, and working with them. That is fundamental to palliative care. We have realised that voluntary assisted dying is a promotion of palliative care and it gives back choices.
Probably some of the older palliative care clinicians have not embraced voluntary assisted dying quite as much. That is probably very generalised, but certainly new consultants and new doctors that are coming through really see this as something that they want to do. I do not think that there is any animosity any more between the practitioners that choose to work in this space and those that do not. I get huge amounts of support from other palliative care physicians that do not necessarily act as practitioners. There is no real divide. It has been embraced, to be honest. In another five years, I think there will probably be very few palliative care practitioners who do not support this, unless they are true conscientious objectors for their own reasons—I guess, probably religious reasons. Palliative Care Australia and the peak medical bodies in Australia have generally shifted to see this as part of patient choice.
Alex Greenwich: The journey to voluntary assisted dying in New South Wales, and indeed across every Australian state, has benefited palliative care access and funding. In New South Wales, 85% of people who have accessed voluntary assisted dying are receiving palliative care. As part of the process, the co-ordinating and consulting practitioners also advise them on palliative care. The doctors are trained on the latest advances in palliative care. Baked into the principles of our legislation is access to palliative care for all citizens of New South Wales. Importantly, throughout our debate, whether Members supported or opposed the reform, our entire Parliament came together to ensure palliative care received an increase in funding and any access issues were addressed. The Australian experience with voluntary assisted dying is that it benefits and strengthens the palliative care system.
Professor Blake: Can I can I add to that? The Voluntary Assisted Dying Board in WA, as in all the other jurisdictions, produces a report. The very strong sentiment of the Voluntary Assisted Dying Board, and indeed within the Western Australia community, is that voluntary assisted dying is seen as part of the end-of-life journey. The board’s report states that the statistics and experience of Western Australians
“confirms…that voluntary assisted dying is an established and enduring end of life choice”.
For that reason, there has been quite a significant awareness that practitioners should be able to bring up voluntary assisted dying with the patient as part of that suite of end-of-life choices. That has been something that the evidence has suggested is very important, because if the practitioners are feeling that they cannot raise it in that context, that is having a detrimental effect on the patients who would like information on it. That has been our experience in Western Australia.
Jack Abbott (Ipswich) (Lab/Co-op)
Q
Alex Greenwich: Thank you very much for your question. At the outset, I will just stress that every jurisdiction should legislate the form of voluntary assisted dying that is appropriate to them. In New South Wales, that was six months for a terminal illness, or 12 months if that terminal illness was a neurodegenerative disorder. We had learned from the other schemes in Australia that that was going to be important because of the decline that occurs in neurodegenerative disorders like motor neurone disease, for example. It was because of that that we went down that path.
Professor Blake: I should add that in Queensland, there is no such distinction in life expectation between other diseases and neurodegenerative diseases. Queensland legislation is different: it sets a 12-month period of expected death, and the reason for that approach was in response to feedback from people living with neurodegenerative disease that they felt that they were being put in a different position to people suffering from, or experiencing, other terminal illnesses. The Queensland Parliament took a different approach to address that particular feedback.
Dr Furst: From South Australia’s perspective, we are similar to New South Wales; we have less than six months for all conditions bar neurodegenerative conditions, which is less than 12 months. As a clinician, personally, I think that 12 months for neurodegenerative conditions is really helpful, because—as you have heard—if you are looking at prognosis and trajectories, with things like cancer, a patient will be going along and then often have quite a steep and rapid decline. That six-month prognosis is quite noticeable, but for patients with conditions like motor neurone disease, their decline can be slow and very distressing to them. Also, when trying to balance the prognosis along with getting them through the process, 12 months is really helpful, so if there was any chance, I would be strongly advocating for that.
Kim Leadbeater (Spen Valley) (Lab)
Q
It is really valuable for us as a Committee to hear your reflections on the experience of the process of passing this legislation. How did you manage to keep that process patient-centred but also take into account the concerns around the broader societal issues, particularly when it comes to equality and human rights—those really important issues? What was that process like, and what are your reflections on it? Also, Dr Furst and Professor Blake, one thing that I feel really strongly about is having really good training around assisted dying, and end-of-life care and choice. Would you like to make any comments on what that looks like?
Alex Greenwich: Thank you very much for that question. I will take you through a little bit of the journey to voluntary assisted dying in New South Wales, what encouraged action, and then the safeguards that we put in place.
The New South Wales coroner had reported to us that there were a number of really horrible suicides of people with terminal illnesses who felt they had no option—that those were cruel and lonely suicides. That was backed up by paramedics and police who would arrive on site. Myself and my parliamentary colleagues decided, “We can do better, and we can regulate in this space.” Voluntary assisted dying in New South Wales is an important form of suicide prevention. What voluntary assisted dying does, in the model that we legislated, is ensure that a person who has a terminal illness and knows that it is going to be a cruel and painful end of their life is instead directed to a doctor—a doctor who will be able to take them through all of their palliative care options, provide and link them with social supports, and give them the choice to have a death that is better than their illness would otherwise provide.
It has been important to make sure that our legislation is limited to that cohort of people who are terminally ill and know they will have a cruel end of life. Our legislation is not about people with anorexia nervosa. It is not about people with a disability. It is not about people who are feeling a burden. It is about a very limited and narrow cohort of people who know that they are going to have a very cruel and painful end of their life, and want that control to know that they can have a death that is better than what their illness would otherwise provide.
We have ensured that decision-making capacity needs to be enduring. We have ensured that a person cannot be under any form of coercion. We ensured that we had a really strong period of implementation, from the time the Bill was passed to 18 months later, when it came into effect, to make sure that our health system and the various doctors required training.
In New South Wales, the experience of voluntary assisted dying is that it has been a form of suicide prevention, and that it has also been, as I explained earlier, very pro-palliative care. As I reflect on our parliamentary debate, it was also one of the first times that our Parliament had grappled with the concept of death. We were very honest about it, and we were very honest in having to admit that we are all going to die, that there are some people with some terminal illnesses who are going to die in a really cruel and painful way, and that we could provide them with an option of control, peace and respect. We believe, and our annual reports into our legislation indicate, that we have been able to provide that. I am happy to answer any further questions, but I will wrap up on that.
Professor Blake: Given that the Western Australia legislation has been in force rather longer than the other jurisdictions that have been talked about today, we have had the opportunity to reflect upon it—I am speaking here as a lawyer; I assume that is why I have been invited to talk—and that has revealed some of the very good things about the working of the legislation, but also some of the challenges that have emerged.
As Dr Furst has said, the legislation in all Australian jurisdictions varies slightly, but it follows a particular legislative model, and is highly prescriptive. It requires a number of requests and, in Western Australia, assessment by two different practitioners. In Western Australia, there is no judicial double-checking of that process. Although I note that that is contemplated within the UK law, that is not something that we have found to be necessary or even appropriate in Western Australia, and I think that would be the case in other Australian jurisdictions.
One of the issues we have experienced is that there is a struggle to get people to take up the training, whether that be medical practitioners or nurse practitioners. One of the thoughts around that has been the very prescriptive nature of the model, which requires a lot of work on the part of the practitioners. It is worth bearing in mind when looking at your piece of legislation that the more prescriptive it is, the more work it requires on the part of practitioners, and that is a lot of work. We need those people to undergo the training in order that the process is done properly and all the safeguards that are included within the legislation—and they are extensive—are respected. That is something to bear in mind.
We have prescriptive provisions around capacity and voluntariness and lack of coercion. I would add that we also have a requirement around residency. If we are looking at when the legislation has come before a tribunal or judicial body, the only circumstance—in Western Australia, at least—where it has come before the tribunal, which is the State Administrative Tribunal, has been where the practitioner has regarded the patient as not eligible on the grounds of not fulfilling the residency requirements. There has been no other ground on which a matter has been taken to a judicial body.
You asked about the training. That is an essential requirement for practitioners who are involved in making assessments and in the whole process. It is intrinsic to the operation of the Act. The feedback I have heard is aligned with what Dr Furst has said—that no divisions have arisen within the practitioners here, and that those who have chosen to do the training are indeed very valued and very much appreciated by the people who have accessed the scheme.
I will say two more things about the regulation. One is that in the report that has been handed down, the only negative feedback has been about delays. That has been identified as being due to a lack of education among health professionals. One of the recommendations of the report is that education really needs to increase so that people’s journey on VAD is not unnecessarily delayed and, perhaps, their wishes are not able to be granted.
The second thing is on conscientious objectors: 13.7% of applications for VAD in Western Australia from 2023 to 2024 were declined on the basis of conscientious objection. But in Western Australia, unlike some other Australian jurisdictions, if a practitioner declines to become involved in the process, they are required by law to give the patient an information sheet outlining options around voluntary assisted dying. That is actually mandated in the legislation.
I have probably said enough for now, so I will hand over to Chloe.
Dr Furst: I completely agree with Meredith that the training is fundamental. For most jurisdictions, it probably takes a full day. It is often an in-person event followed by an exam, which you have to pass. In South Australia, we had a whole lot of mandatory questions that you actually had to pass to be eligible, to make sure that you were upholding the legislation.
This is so different from anything else in medicine. In any other part of medicine that I practise, if I see a process that I think can be improved—if I see efficiencies that can be made or bits of the system that are not adding to patient care—I can choose to adapt the process as I see fit to give the patient the care that I want to give or that is compatible with what the patient wishes. That is so different from voluntary assisted dying, where, as Meredith said, it is so legislated, down to who can be a witness for various documents. As a doctor, the amount of documentation that is required for voluntary assisted dying is second to nothing. We just do not do that kind of documentation in any other areas of medicine. So it is quite different, and it really does require being quite precise around that documentation and making sure that you are meeting all the timeframes and guidelines. The training is hugely important in terms of the operational component.
There is also the training around end of life and conversations, and how you support the patient and the families. That is a lot harder to teach. That is, I guess, why people will fall into this, and why a large number of palliative care doctors will do it—because it is already second nature to them or they already have the relationship with the patient and they see these conversations as something they are good at and good at facilitating.
So there are two parts of that training that are really important, and then, as Meredith said, there is also the training we need to be giving to the rest of our workforce, and really all health practitioners. A patient might ask the social worker, the orderly or the dietician about assisted dying, and they have to know how they can respond and how they can connect that individual to the right practitioner. That is really important. We have done a lot of work in South Australia, as all the other jurisdictions have, around upskilling the whole workforce, because this is everyone’s role and job.
I also wanted to speak briefly on what we in South Australia call the gag clause. In South Australia and Victoria, we are not allowed to bring up voluntary assisted dying with patients, and that is really, really problematic. From my perspective, it leads to poor provision of care. In medicine, when I am talking to a patient, in every other area, if they needed treatment, I would be obliged, and it would be good practice, to tell them about all the treatment options that are available to them. If someone had cancer, I would want to be telling them about good palliative care, potentially surgery, and radiotherapy and chemotherapy, yet voluntary assisted dying is the one thing we are not allowed to talk about and is taken off the menu. Some people may not know that voluntary assisted dying is available to them. They might be waiting for me as the doctor to bring it up to them. I have brought up every other option for them; why am I not able to talk about voluntary assisted dying? I just think it is really important that we do not stigmatise voluntary assisted dying and that we see it as a valid option for people.
Professor Blake: To add to what Chloe said, in Western Australia practitioners can raise voluntary assisted dying as long as it is in association with other end-of-life choices, but the way the legislation is worded is confusing, so one of the recommendations in the most recent report is that that be removed altogether so that voluntary assisted dying is treated like any other treatment option. As Chloe indicated, the evidence was that treating voluntary assisted dying differently can compromise the whole end-of-life journey, because it interferes with discussion of other end-of-life options. The strong recommendation from the board is that it be removed altogether and that voluntary assisted dying be treated just like any other appropriate treatment option so that the patient has a true choice.
The Chair
Colleagues, before we continue, let me say that we have 13 questions and less than 30 minutes, so the question and the answer need to be no more than two minutes.
Daniel Francis (Bexleyheath and Crayford) (Lab)
Q
Dr Furst: Capacity assessments are taken every time a doctor sees the patient. In my state, that would be at first assessment—first request—then a consulting doctor would come and do another hour-long assessment of the patient and assesses capacity at that stage, and then I would come back as the co-ordinating doctor for a second or third assessment of the patient, and assess capacity. They would then be given their drug, if it is self-administered. We assume and hope that they retain capacity, and we strongly advise patients and families that, should they lose capacity, they will have voided their permit and they cannot take the drug, but there is less oversight of that. However, we know that the majority—over 80%—of these patients are connected with palliative care, so we often have community teams going in and seeing them, and we are still touching base with them, maybe more peripherally, and checking capacity as we are having conversations or as we are coming and doing home visits from a palliative care perspective. If it were deemed that the patient is quite delirious, the permit would be voided and we would remove the substance from the house. If it is practitioner administration, we are also, obviously, testing capacity right at the moment that we are administering the substance.
Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)
Q
Alex Greenwich: In New South Wales, our legislation deals with and goes through coercion in quite some detail, with pathways to assess it. It deals specifically, for example, with a situation in which someone is under coercion from a person who is a beneficiary of their will; obviously, the person seeking voluntary assisted dying then becomes ineligible. In the space of coercion, that is a key part of the training for a doctor who will be a consulting or co-ordinating practitioner. We have made it a criminal offence in New South Wales, and indeed our board will report on it and on whether eligibility for access to voluntary assisted dying has been denied to someone. Our most recent report indicates that it has.
The overwhelming experience is that having voluntary assisted dying in place is itself a safeguard from coercion for people with a terminal illness. If someone wants to end their life quickly, voluntary assisted dying through a regulated process is not the option that they are going to take. Someone engaging in voluntary assisted dying will be assessed against coercion and against decision-making capacity, and will have to make sure it is an enduring decision.
When we talk about coercion, and the concern that people may currently have in the UK about people with a terminal illness feeling in any way coerced, the experience in New South Wales and elsewhere in Australia is that voluntary assisted dying has provided a safeguard in that regard. Our legislation, the training and the reporting is very clear on that.
Danny Kruger (East Wiltshire) (Con)
Q
Dr Furst: I do not think that is the case. We are seeking out from relatives—within a month, normally—around any complications. As I said, we are also informally speaking to the nurse practitioners who are on site, but I do not think that that has been published as part of our state report. In terms of coercion, I would say that it is much more likely that patients are being coerced into invasive and intensive treatments, like cancer treatments such as chemotherapy, than being coerced into voluntary assisted dying.
Danny Kruger
Q
Mr Greenwich, you said a couple of things. You said that voluntary assisted dying supports palliative care in terms of funding. I read that although New South Wales committed to spending an extra 743 million Australian dollars on palliative care, in fact the budget was cut by 249 million Australian dollars in 2023; at the same time, New South Wales allocated 97 million Australian dollars in new funding to assisted dying. I do not understand how you think that palliative care benefited from this introduction.
You talked about suicide prevention. The fact is that unassisted suicide rises in states that have assisted suicide laws, because suicide is contagious. It is too early to tell what is happening in New South Wales, but in recent years in Victoria unassisted suicide rose by 50%, while in New South Wales, before it had this law, it stayed the same. Again, I do not understand how you think that this helps with suicide.
We have just heard about the so-called safeguards and we heard yesterday from Australian colleagues. Do you agree that the safeguards that were introduced were in fact impediments to access and that it would be the right thing to do to remove them?
Alex Greenwich: I will try in the time to answer all three of those questions and I am happy to provide more information on notice as well.
On the palliative care funding, it is accurate that New South Wales had a record boost in palliative care funding. Not all of that could be expended as the workforce was being trained up, but that commitment from all sides of our Parliament is there. You can always seek to improve palliative care funding; that in no way should be competing at all with voluntary assisted dying.
When it comes to the question of suicide, as I addressed in my opening statement, voluntary assisted dying is a form of suicide prevention. If someone wishes to end their life, voluntary assisted dying is not the process they are going to take. It is a process that provides a safeguard to ensure that people are getting full information on palliative care and getting social supports.
In terms of the safeguards in our legislation and being proposed in your legislation, it is really important that you have in your head and in your heart the experience of a person with a terminal illness who is going to have a cruel and painful death. We are talking about people who are dying and who want to have a death better than their terminal illness would otherwise provide them with. We are talking about a small cohort to whom we in New South Wales sought to give peace, dignity and control. We are really proud that we did.
Kit Malthouse (North West Hampshire) (Con)
Q
Alex Greenwich: Our experience in New South Wales was based on evidence from doctors and people with the lived experience of a terminal illness. It is an extremely confronting thing to be told that you have a terminal illness, to be told that you have six months to live or to be told, if you have advanced bowel cancer, for example, that your end of life will look like you are going to be choking on your own faeces.
In New South Wales, we decided that it is important that that person, who has been told that they have a terminal illness, is able to have a full conversation with their doctor about all their options—one of those options being that they could have a better death than their illness would otherwise provide them with. We decided that being able to really talk through with your doctor all your options—from access to palliative care, to social supports, to what the process of voluntary assisted dying looks like—was so important. We believe that it is working really well in practice. We would be concerned about gagging those conversations, as that would ensure that a patient is not receiving the full information about their end-of-life choices.
Kit Malthouse
Q
Alex Greenwich: Yes. In our legislation we make it clear that the doctor has to make sure that the patient is aware of their palliative care options, and we have referral pathways for psychosocial support as well. All that is prescribed in the legislation. Obviously, in the training for voluntary assisted dying a lot of that stuff is covered. In the legislation, we also define the things we want to have in that training.
Kit Malthouse
Doctors?
Professor Blake: In Western Australia, which was the second jurisdiction to introduce voluntary assisted dying—
Tom Gordon (Harrogate and Knaresborough) (LD)
Q
Alex Greenwich: New South Wales was last in the nation when it came to adopting voluntary assisted dying, and that was actually beneficial because we were able to draw on the experiences of particularly Victoria and Western Australia to make sure that things like the gag clause were not in place. With all respect to the introducer of the Bill, as a result of the Australian experience this is not a revolutionary law reform. It has been tried and tested, we have appropriate safeguards in place throughout Australia, and they work.
Rachel Hopkins (Luton South and South Bedfordshire) (Lab)
Q
Dr Furst: First up, a patient has to specifically ask me about voluntary assisted dying. They have got to use words that really imply that that is what they want. I will often ask any relatives to leave so that I can have a conversation just with them, to try and reduce the risk of coercion, and then invite the family back.
One of the practical things that I often ask the patient is when they started thinking about this. Is it something that they have always considered should be a right, or is it more of a new-found belief given their current suffering? I want to understand what their current suffering is. I ask specifically whether they feel a burden on their family and friends. It is an hour-plus long conversation to really understand them and their suffering.
Again, I make sure they understand all the other treatment options available to them and what good palliative care looks like. I will often be prescribing other medications as part of that good palliative care—opiates and anxiolytics. As a geriatrician, I am also making sure that their mood is also addressed, and that this is not a reactive depression. I am really doing a holistic and comprehensive geriatric assessment as part of that voluntary assisted dying assessment as well.
Dr Marie Tidball (Penistone and Stocksbridge) (Lab)
Q
Dr Furst: All around Australia, mental health as the primary terminal illness is excluded, so anorexia by definition is excluded. I have had a patient come to me with anorexia as their terminal illness requesting voluntary assisted dying. It is a relatively easy assessment because they do not meet the standard criteria, and I was able to explain to them that they were not eligible. But it opens the opportunity to have good, in-depth conversations with them about what they are going through.
I cannot talk to the learning disabilities question, other than to say that every time a patient comes to me the assessment is directed to the patient. I saw a patient today with motor neurone disease who is on continuous bi-level positive airway pressure and is using Eyegaze. The assessment and conversations I have with her are based around what she can do for me. I have had patients who have been able to put a thumb up and down, and I have had trachy patients. I cannot necessarily talk about learning disabilities, but as a holistic practitioner you are trying to make sure that the patient in front of you understands everything and is given the full opportunity to express their wishes.
Professor Blake: I would just say—
The Chair
Order. I can only take one answer. I am sorry, Meredith, but we have not got time. It is one answer to one question.
Sojan Joseph (Ashford) (Lab)
Q
Dr Furst: We have experience of those cases in palliative care, but I would still say that they are not eligible for voluntary assisted dying. None of us would feel comfortable, because the condition has to be irreversible. Capacity-wise, you would have to make sure that they had capacity, and I would question whether someone that is anorexic truly has capacity around their illness.
Lewis Atkinson (Sunderland Central) (Lab)
Q
Alex Greenwich: In New South Wales, and across Australia, having a disability or complex mental health issue like anorexia does not make you eligible at all for voluntary assisted dying. The legislation we are dealing with and you are dealing with is not for people with a disability or anorexia nervosa, and not for people who feel they are a burden. It is for people with a terminal illness who may want the choice of a death that is better than what the illness would otherwise provide.
We worked closely with disability groups in New South Wales. Their main concern was that they would be treated equally in terms of access to the law if a person with a disability had a terminal illness. The key point is that this legislation is a safeguard to those concerns. To the point about people who are starving themselves, that is happening today in the UK because people do not have access to voluntary assisted dying. They are starving themselves to death rather than accessing a regulated scheme where they can discuss all their options and choices.
Jake Richards (Rother Valley) (Lab)
Q
Alex Greenwich: If I think of our health system and how we adopted voluntary assisted dying, like all health systems we were under pressure following the covid pandemic. By legislating in this space you give your health system the priority of dealing with this, making sure doctors are trained to be able to address it and that there is a good implementation period. I believe the Bill has two years, and I think that is completely appropriate to make sure your health system gets up to speed. When it comes to end-of-life choices and healthcare, voluntary assisted dying provides a great deal of honesty and safeguards.
Sean Woodcock (Banbury) (Lab)
Q
Professor Blake: That is not the evidence that we have got.
Sean Woodcock
Let me just clarify. The state’s own report in 2023-24 had 35%.
Professor Blake: We have in a place a system whereby at least 20 case studies are examined by the board every year to look at the reasons behind the taking up of the option. As a means of checking up on how the system is working, that has proven to be very workable.
There are people who feel that they are a burden. People can feel that they are a burden, and that is part of their autonomous thinking. People have their own views of their own life. The system in place is adhering to the very well-established tests for valid decision making in healthcare generally. If we are talking about people making decisions because they feel like they a burden, well, people make decisions about their healthcare in all sorts of contexts. We have a system of ensuring that decisions are valid, which has proven to be long-standing and successful. That is that the person has capacity, that their decision is voluntary, and that they are informed of the relevant facts and information. That test has stood the test of time, and our legislation, and the legislation throughout Australia, seeks to replicate it.
I would add that with our voluntary assisted dying laws, there is a very clear emphasis on the information that the patient is entitled to. The information that the practitioner has to give to the patient is extensive. It must go through the palliative care options. It must go through with them what voluntary assisted dying involves, and it must also include discussion of, “What if the voluntary assisted dying moment does not work?”
The list of matters that must be discussed by the practitioner is very extensive. In no other sphere of medicine where a patient is working with their healthcare practitioner does this level of informed consent apply. In terms of medical practitioners ensuring that people have the capacity to make the decision, are making it voluntarily and have all the relevant information at their disposal, we cannot find anywhere, in any other context of healthcare, the level of safeguards and protections that we find in this sphere.
If there are people who are saying they are a burden, that does not mean that their decision is not voluntary. That does not mean that they do not have the capacity. It simply is an expression of how they feel. The key thing is not whether they think they are a burden; the key criteria are whether they have the capacity and whether their decision is voluntary and free from coercion. Health practitioners make those assessments all day, every day.
The Chair
Order. I remind colleagues that it is unacceptable for a Member to interrupt a witness once they have started answering. That brings us to the end of the time allocated for the Committee to ask questions. I thank all witnesses on behalf of the Committee for their evidence.
Ordered, That further consideration be now adjourned. —(Kit Malthouse.)
Terminally Ill Adults (End of Life) Bill (Eighth sitting)
Tuesday 11th February 2025
(10 months ago)
Public Bill CommitteesTerminally Ill Adults (End of Life) Bill 2024-26 Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 11 February 2025 - (11 Feb 2025)
The Chair
Will everyone ensure that all electronic devices are switched off or to silent mode? We now begin line-by-line consideration of the Terminally Ill Adults (End of Life) Bill. The selection list for today’s sitting is available in the room and on the parliamentary website. It shows how the clauses, schedules and selected amendments have been grouped together for debate.
I remind the Committee that a Member who has put their name to the lead amendment in a group is called first or, in the case of a stand part debate, the Member in charge, Kim Leadbeater, will be called to speak first. Other Members are then free to indicate that they wish to speak in the debate by bobbing. At the end of the debate on a group of amendments and new clauses and schedules, I shall call the Member who moved the lead amendment or new clause again. Before they sit down, they will need to indicate whether they wish to withdraw the amendment or the new clause, or to seek a decision. If any Member wishes to press any other amendment—including any of the grouped new clauses and schedules—to a vote, they need to let me know. I shall use my discretion to decide whether to allow a separate stand part debate on individual clauses and schedules following the debate on relevant amendments.
I hope that explanation is helpful. If any Member wishes to make a declaration of interest, they can do so now.
Daniel Francis (Bexleyheath and Crayford) (Lab)
On a point of order, Ms McVey. Yesterday, members of the Committee received notification that, in the last week, we have received a further 242 pieces of written evidence and 159 pieces of correspondence. Last week, I had read every word of the original 110 pieces of written evidence and 56 pieces of correspondence, as well as studying all the amendments and tabling amendments of my own. As I said, however, more than 400 pieces of evidence and correspondence have been uploaded during the past week, with no deadline by which further such evidence needs to be submitted. Given the large number of evidence submissions every day, Members may well struggle to keep abreast of it and be able to say that they have read every piece of correspondence before the tweaking of the Bill.
I find it difficult to believe that any member of the Committee has been able to read all the evidence submitted since last Tuesday. For instance, the written evidence submitted by the chief executive of my local hospice, which she blind-copied me into on 20 January, was available for members of this Committee to read on 7 February, 17 days after she submitted it. That suggests that, as well as Members struggling to keep up, the Clerks are struggling to keep up. Given the sheer volume of evidence, we will not be able to consider it fully before line-by-line scrutiny.
I therefore seek your advice, Ms McVey, on how we can reasonably expected to begin line-by-line scrutiny when in the last week we have been presented with more than 400 documents, in addition to new amendments.
The Chair
I thank the Member for making that point of order. It is normal practice for evidence to come in, and for it to be submitted as it comes in. However, due to the large amount of evidence and its substance, and to the importance of the Bill and this line-by-line scrutiny, I will seek the advice of the Clerk and will come back to him.
Naz Shah (Bradford West) (Lab)
Further to that point of order, Ms McVey. My concern is about written evidence that has been submitted but not yet read—I have certainly not been through the last batch of evidence that we have had. How do we proceed when, for example, we might have gone through clauses 1 and 2, or even up to clause 4 or 5, and we receive evidence related to those clauses? We will have already discussed them in Committee. We have been told we will only get five hours on Report, while on Second Reading more than 100 MPs, including me, were unable to speak. The evidence could inform amendments. I am struggling to understand how this will be workable. I would value your advice.
The Chair
I am pleased that people feel they are free to make those points. It is for the Committee to decide how fast to move through the Bill.
Sojan Joseph (Ashford) (Lab)
Further to those points of order, Ms McVey. I also assume that we are expecting more written evidence to come through. We Committee members are here for the whole day. I hear you say, Ms McVey, that this is normal practice, but considering the importance of the Bill, I assume there will be a lot more written evidence by the end of today. It would be good to consider how Committee members are able to go through that written evidence before we come back here tomorrow morning.
The Chair
As I expressed before, it is for the Committee to decide. Should Members feel they have not had enough time, it is for the Committee to raise a point on that. Should people wish to have an adjourn, they could move that and the Committee would vote on it.
Danny Kruger (East Wiltshire) (Con)
Further to those points of order, Ms McVey. I am grateful for your guidance, and I acknowledge your point that normal process is being followed in this Committee.
Nevertheless, further to the points made by hon. Members, last night we heard through the media that a very substantial change to the Bill will be introduced. We have not yet seen those amendments proposed by the hon. Member for Spen Valley, but we look forward to doing so. This goes to the same point: we are being asked to start line-by-line scrutiny today of a Bill with a huge amount of evidence that we have not yet been able to digest. Furthermore, substantial changes to the Bill that we voted on at Second Reading are being tabled. I appreciate that the process allows amendments to be tabled at any time through the course of the Bill as long as the clause is still ahead. Nevertheless, I value your guidance on whether it might be appropriate to seek an Adjournment so that we can consider the additional evidence, but also allow the hon. Member for Spen Valley to table her amendments, which change the whole scope of the Bill as voted on at Second Reading.
The Chair
I thank the hon. Member for his point of order. As I said, the Committee would have to move and vote on an Adjournment. These are significant points of concern and alteration for the Bill, but that is for the Committee to decide.
Sean Woodcock (Banbury) (Lab)
Further to those points of order, Ms McVey. My point of concern is similar to the one just raised, and is about the fact that on Second Reading a key plank of this proposed Bill was about the role of the High Court judges. We are aware of an amendment coming via the promoter of the Bill, my hon. Friend the Member for Spen Valley, to remove that completely and replace it with something else. I suggest that a lot of the evidence that we have seen, including the new stuff that has been mentioned by my hon. Friend the Member for Bexleyheath and Crayford, is based on the expectation of there being a High Court judge in that role; not on there being a new amendment. I suggest that we are missing vital perspectives on the way that any new amendment, and the Bill going forward, would work in the light of that. That is my concern.
The Chair
It is important that everybody has got their point on the record, and that they have said and raised their concerns.
Kit Malthouse (North West Hampshire) (Con)
Further to those points of order, Ms McVey. First of all, it is worth saying that the amendments tabled by the Bill’s promoter, the hon. Member for Spen Valley, are in response to evidence that has been heard by this Committee—oral and written. Certainly the Bill Committees that I have been on have had repeated information coming in as the Bill has evolved. That is an actual process.
It is worth also pointing out to Members that the Bill Committee is not the end of the process, and written evidence that will arrive throughout will be pertinent on Report, when the whole House will have that information available. Then members of the Committee can lead the debate and reflect on information or written evidence that has emerged even after Committee stage, once the completed Bill from that process is seen. It is perfectly possible for this to evolve as we get to Report and Third Reading in the light of evidence that arrives. That is the normal process through which all legislation goes.
Kim Leadbeater (Spen Valley) (Lab)
Further to those points of order, Ms McVey. I take on board people’s comments. There’s no two ways about it; this is a considerable amount of work for members of the Bill Committee to undertake. As has been alluded to, there are a wide range of amendments being proposed. The job of the Committee is to take evidence, look at those amendments, discuss and debate them, and then vote accordingly. That is the process that we are all here to undertake.
Kim Leadbeater
I beg to move amendment 178, in clause 1, page 1, line 3, after “person” insert “in England or Wales”.
This amendment provides that only persons in England or Wales may be provided with assistance in accordance with the Bill.
The Chair
With this it will be convenient to discuss the following:
Amendment 179, in clause 1, page 1, line 13, after “provided” insert “in England or Wales”.
This amendment limits the assistance that may be provided in accordance with the Bill to assistance in England or Wales.
Amendment 180, in clause 1, page 1, line 20, at end insert—
“(3) The steps to be taken under sections 5, 7, 8 and 13 must be taken—
(a) when the terminally ill person is in England or Wales, and
(b) in the case of the steps under sections 7 and 8, by persons in England or Wales.”
This amendment provides that steps under clauses 5, 7, 8 and 13 must be taken by and in respect of persons in England or Wales.
Amendment 182, in clause 4, page 2, line 21, after “person” insert “in England or Wales”.
This amendment limits subsection (3) to cases where the person is in England or Wales.
Amendment 193, in clause 7, page 4, line 8, at end insert—
“(ca) is in England and Wales,”.
This amendment, which is consequential on Amendment 178, provides that the coordinating doctor must ascertain whether, in their opinion, the person who made the first declaration is in England and Wales.
Kim Leadbeater
It is a great pleasure to serve under your chairship, Ms McVey, in this very important stage in the consideration and detailed scrutiny of the Bill.
We are discussing assisted dying for terminally ill adults who have a clear, settled and informed wish to end their own life, and who have not been subjected to coercion or pressure from anybody else to do so. These are very serious matters and deserve serious consideration, which is why I was determined that this Bill should have an unprecedented level of scrutiny. We have heard from a range of over 50 witnesses with differing views on the Bill and have received written evidence from many, many more.
I am grateful to everyone who has contributed in such a thoughtful and constructive way. It has been widely remarked—and I wholeheartedly agree—that the Second Reading debate on 29 November last year, when the House approved the principle of the Bill by a majority of 55, showed Parliament at its best. I hope and believe that this Committee, as it goes through the Bill line by line, will do so in the same considered, respectful and measured manner.
Danny Kruger
I completely endorse that last point made by the hon. Lady. Does she remember how many Members on Second Reading—including, I think, herself—made reference to the judicial stage of the process and specifically to the High Court judge? Over 60 colleagues have stated on the record that they voted for the Bill on Second Reading because of that safeguard. Does she acknowledge that point?
Kim Leadbeater
I do acknowledge that point—absolutely, as I have acknowledged, the role of a High Court judge is really important in this process. That role will remain with the amendment I have tabled. It will also take account of the very clear evidence we received during the oral evidence sessions from psychiatrists, social workers and other professionals who feel that they have an important role to play in this process. Indeed, I heard the hon. Gentleman say he agreed with that on the radio this morning. It is very important that we hear from those experts. There is no point in having witnesses if we do not listen to what they have to say.
The Chair
Order. I remind Members that they should keep to the amendments being debated.
Kim Leadbeater
Thank you, Ms McVey.
I hope and believe that the Committee will take the same considered, respectful approach that we have taken previously. We have been asked by the House to look at where the Bill can be improved and to amend it, so that Parliament can be presented with a piece of legislation that is robust and workable in order to meet the objectives it is designed to achieve. Most—if not all—the amendments tabled in my name, have been drafted with the help of parliamentary counsel and officials in both the Department of Health and Social Care and the Ministry of Justice. The Government are committed to making the Bill workable and operable, while maintaining a position of neutrality.
I am grateful for the tremendous hard work that has gone into this to make a well-drafted Bill even better. I know the Ministers on the Committee, although remaining neutral, will be here to explain, where necessary, why some drafting amendments were needed to meet their duty to the statute book. There is an old adage that says too many cooks spoil the broth. That may not exactly be parliamentary language, but we will have to bear it in mind as we go along. Over 300 amendments have been tabled—most of them with the intention of improving and strengthening the Bill. I thank all MPs, whether members of the Committee or not, for the time and effort they have put in.
We have a responsibility to maintain the integrity and coherence of the Bill as a whole, so it is evident that we will not be able to accept all amendments. Indeed, we may find ourselves rejecting amendments that sound entirely reasonable in themselves and that undoubtedly come from a good place, but that are perhaps better addressed elsewhere in the drafting. Others might have unintended consequences or create a degree of ambiguity or uncertainty that could undermine the legal authority of the legislation. That might be very good for the pockets of lawyers, but it does not make for good law.
The Chair
Order. I remind the Member that although a brief introduction is acceptable, we should be talking to the amendments in this group.
Kim Leadbeater
Absolutely, Ms McVey—thank you for allowing me to make some introductory comments.
Amendments 178 to 180, 182 and 193 simply clarify that only persons in England and Wales may be provided with assistance in accordance with the Act, and only medical practitioners in England and Wales can carry out the required roles at each stage of the process. Hopefully, this is a nice straightforward one to get us started.
The Minister for Care (Stephen Kinnock)
I thank my hon. Friend the Member for Spen Valley for her introductory comments. The Government will continue to remain neutral on the Bill and do not hold a position on assisted dying. I want to make it clear that I, along with the Minister of State, Ministry of Justice, my hon. and learned Friend the Member for Finchley and Golders Green, are speaking in Committee not as Members of Parliament, but as Government Ministers responsible for ensuring that the Bill, if passed, is effective, legally robust and workable.
To that end, we have been working closely with the hon. Member for Spen Valley and, where changes have been mutually agreed on by herself and the Government, we will offer a technical, factual explanation for the amendments. Therefore, I will not be offering up a Government view on the merits of any proposed changes put forward by other Members, but I will make brief remarks on an amendment’s legal and practical impact to assist Members in undertaking line-by-line scrutiny.
Rebecca Paul (Reigate) (Con)
May I ask how what the Minister has just said interacts with voting? He set out clearly his involvement in the Committee, so how does that impact any votes that he will take part in during it?
Stephen Kinnock
I am on the Committee as a Member of Parliament and I vote as such. When I speak on the Committee, I speak as a Government Minister in order to provide factual and technical explanations. As the Bill is a matter of conscience, I will be voting with my conscience on all the amendments as they come forward.
The amendments that we are now debating have been tabled by my hon. Friend the Member for Spen Valley in consultation with the Government. They relate to the location of the person seeking assistance under the Bill and are designed to ensure that the service can only be accessed by an individual present in England and Wales, with a view to preventing medical tourism.
I will take the amendments in turn. Amendments 178 and 193 would ensure that only a terminally ill person in England or Wales may be provided with assistance in accordance with the Bill. Further to that, a requirement is placed on the co-ordinating doctor to ascertain whether, in their opinion, the person who made the first declaration is in England and Wales as part of their first assessment. Amendment 179 would limit the assistance that may be provided in accordance with the Bill to assistance in England or Wales only. Amendment 180 would require the steps taken under clauses 5, 7, 8 and 13 that relate to both declarations and both doctors’ assessments to be taken by persons in England or Wales.
Amendment 182 would limit the provision of clause 4(3), where a person indicates to a registered medical practitioner their wish to seek assistance to end their own life, to cases where the person is physically present in England or Wales. It would prevent people who are outside of England or Wales from accessing assistance in accordance with the Act—for example, by online consultations from abroad.
As I said earlier, the Government will continue to remain neutral on the substantive policy questions relevant to how the law in this area could be changed. That is, as I have made clear, a matter for the Committee and for Parliament as a whole. However, I hope that these observations are helpful to Members in considering the Bill and the amendments tabled by my hon. Friend the Member for Spen Valley.
Amendment 178 agreed to.
Sarah Olney (Richmond Park) (LD)
I beg to move amendment 34, in clause 1, page 1, line 4, leave out “capacity” and insert “ability”.
This replaces the concept of capacity based on the Mental Capacity Act and replaces it with a new concept of ability which is defined in NC1.
The Chair
With this it will be convenient to discuss the following:
Amendment 36, in clause 7, page 4, line 7, leave out “capacity” and insert “the ability”.
This amendment is consequential on Amendment 34 and NC1.
Amendment 37, in clause 8, page 4, line 34, leave out “capacity” and insert “the ability”.
This amendment is consequential on Amendment 34 and NC1.
Amendment 38, in clause 9, page 6, line 27, leave out “capacity” and insert “ability”.
This amendment is consequential on Amendment 34 and NC1.
Amendment 202, in clause 9, page 6, line 31, leave out “capability” and insert “capacity”.
This amendment corrects a typographical error.
Amendment 39, in clause 9, page 6, line 31, leave out “capability” and insert “ability”.
This amendment is consequential on Amendment 34 and NC1.
Amendment 40, in clause 12, page 8, line 2, leave out “capacity” and insert “the ability”.
This amendment is consequential on Amendment 34 and NC1.
Amendment 41, in clause 13, page 9, line 31, leave out “capacity” and insert “ability”.
This amendment is consequential on Amendment 34 and NC1.
Amendment 42, in clause 18, page 12, line 23, leave out “capacity” and insert “the ability”.
This amendment is consequential on Amendment 34 and NC1.
Amendment 43, in clause 30, page 18, line 16, leave out “capacity” and insert “the ability”.
This amendment is consequential on Amendment 34 and NC1.
Amendment 44, in clause 40, page 23, line 26, leave out from “capacity” and insert “ability”.
This amendment is consequential on Amendment 34 and NC1.
New clause 1—Ability to make decision—
“The person is to be considered as having the ability to make a decision to request assistance to end their life if they can fully understand, use and weigh the relevant information in accordance with regulations made by the Secretary of State under affirmative resolution.”
This new clause defines the concept of ability which is intended to replace the concept of capacity. This new clause is intended to replace clause 3.
Amendment 45, to schedule 2, page 26, line 36, leave out “capacity” and insert “the ability to make a decision”.
Amendment 46, to schedule 3, page 28, line 1, leave out “capacity” and insert “the ability to make a decision”.
Amendment 47, to schedule 5, page 30, line 14, leave out “capacity” and insert “the ability to make a decision”.
Sarah Olney
It is a pleasure to serve under your chairmanship, Ms McVey. I thank the hon. Member for Spen Valley for her opening remarks. I am grateful to be called so early in proceedings, because I believe this is one of the really important issues before us. It is about whether or not somebody
“has the capacity to make a decision to end their own life”
as is stated in clause 1(1)(a). I believe that the word “capacity” in this context is potentially difficult to define. I note that in clause 3, all reference to mental capacity is assumed to refer to the Mental Capacity Act 2005, but I do not believe that that is sufficient for the purposes of the Bill. We heard plenty of voices to support my point of view during the oral evidence, so I want to reflect on that.
I think there are four separate concerns about using the Mental Capacity Act 2005 to judge capacity. The Royal College of Psychiatrists submitted its original written evidence in January, which we have all had sight of, and it said:
“Under the Bill as introduced, a person with a co-occurring mental disorder that is impacting their wish to end their own life would not necessarily be deemed ineligible; only those whose mental disorder was deemed to impair their capacity to make a decision to end their own life would be excluded.”
That means that an individual could have a terminal illness and also separately have a mental illness, such as depression; that would affect their ability to make a decision as to whether that terminal illness was sufficient for them to ask for assistance with dying.
Daniel Francis
The Mental Capacity Act is written to enable people to carry out day-to-day scenarios, such as buying a coffee or doing their banking, so that they are not challenged in every transaction in their life. It is therefore a very low bar to be deemed to have capacity. Does the hon. Member believe that it was written for this kind of scenario?
Sarah Olney
That is an absolutely relevant point. The Mental Capacity Act was not drafted in anticipation of it ever being used for this kind of scenario. Therefore, it is really incumbent upon us to weigh very carefully whether the Mental Capacity Act is the right way of assessing people’s ability to make this decision. As I was saying, it includes the presumption of capacity, and for a decision to end one’s life, an assumption of capacity to make that decision is a low bar, and we have lots of evidence.
Danny Kruger
I am interested in that point about the Mental Capacity Act not having been written with the Bill in mind. That is absolutely true for the minds of its framers and the Parliament that passed it at the time. It is worth noting, however, that we can see from the accounts and records of the Voluntary Euthanasia Society, which became Dignity in Dying a few years later, that it was lobbying at the time covertly—or behind the scenes—for the Mental Capacity Act to be framed in exactly that way. The Voluntary Euthanasia Society was very conscious that, when the time came to pass the law for assisted suicide, it would be very helpful to have a capacity Act on the statute book that had this very low bar. The society was delighted when the Act was passed in the way that it was, and it boasted at the time of the influence it had had on the Act.
Sarah Olney
That is a very interesting intervention. I cannot comment on that because I have no knowledge of how the Mental Capacity Act was drafted or the evidence that was taken.
Dr Simon Opher (Stroud) (Lab)
I do believe that the Mental Capacity Act enables people to make very serious decisions, such as stopping cancer treatment, so I would absolutely dispute the hon. Lady’s interpretation of it.
Sarah Olney
The hon. Gentleman puts his finger on the exact point: it allows people to make a decision about whether or not they want to continue treatment; it has not been used in this way before, and it was not intended to be used for that purpose. I understand the hon. Gentleman’s point: he was trying to say that to stop treatment is akin to making a proactive decision to end one’s life, but I would argue that it is not, and that is why the Mental Capacity Act is unsuitable for this purpose.
It was interesting to reflect on the oral and written evidence we received on this issue. Professor Sir Chris Whitty, the chief medical officer, stated in his oral evidence:
“Issues…around mental capacity…are dealt with every day…every doctor and nurse above a certain level of seniority should be able to do that normally. It may require some slight adjustment.”
He acknowledged that
“the more serious the decision, the greater the level of capacity that someone needs to have.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 30, Q13.]
However, the Royal College of Psychiatrists said that
“an assessment of a person’s mental capacity to decide to end their own life is an entirely different and more complex determination requiring a higher level of understanding.”
Sean Woodcock
During the oral evidence, we heard from three sets of psychiatrists who all cast doubt on the suitability of the Mental Capacity Act for decisions such as assisted dying. Is the hon. Lady’ s amendment an attempt to alleviate those doubts and put that right in the Bill?
Sarah Olney
Yes, that is exactly what I am aiming to do. The hon. Member makes an excellent point. There is a wide variety of views on this, but in actual fact, much as I do not wish to question Professor Sir Chris Whitty, and I acknowledge his seniority as the chief medical officer, he was very much the outlier on this. Everybody else who gave evidence on the sufficiency of the Mental Capacity Act to determine someone’s capability to make this decision for themselves cast doubt on the idea that the Mental Capacity Act was the right way of doing it.
Kim Leadbeater
That is not quite accurate. I think we did have other witnesses who absolutely said that they had confidence in the Mental Capacity Act, and I will speak about them in this debate.
Sarah Olney
I look forward to the hon. Lady’s further comments, but as I said, the psychiatrists were very clear that they did not believe that this was a sufficient safeguard, and we should acknowledge that.
I was unable to put my question to Alex Ruck Keene KC during the oral evidence session, but he kindly agreed to give further evidence in writing in response to a letter I sent to him later that day. That exchange of letters has been published as written evidence. It was his position that, in actual fact, Professor Sir Chris Whitty misinterpreted the Mental Capacity Act when he gave evidence. There is no such requirement in the Mental Capacity Act that states that the more serious the decision, the greater the level of capacity that someone needs to have. Mr Ruck Keene’s view is that that was the common law prior to the Mental Capacity Act coming into force, whereas in actual fact the Mental Capacity Act does not require that the more serious the decision, the more capacity someone needs to be judged to have.
Jake Richards (Rother Valley) (Lab)
I am sympathetic to the problem the hon. Lady has identified of people who have a terminal illness as well as other mental health conditions. Instead of rewriting the Mental Capacity Act for this new context, would it not be better to secure safeguards through clause 9, through which further assessments are potentially going to be mandated, if the amendment from the hon. Member for St Albans (Daisy Cooper) is agreed to, for those cases where there is doubt as to capacity? That would add a further safeguard rather than rewriting the established Mental Capacity Act and case law.
Sarah Olney
I have no intention of rewriting the Mental Capacity Act. It should stand exactly as it is and be used for the purpose for which it is intended. That is not the intention behind my amendment, which merely proposes that we should assess people’s ability to make the decision and not just their capacity. Many of those who provided evidence demonstrated that merely testing somebody’s capacity to make a decision is insufficient in this case.
Dr Opher
We also heard evidence that if we make this more complicated and introduce more terms into the Bill, then there will be less safeguarding for patients. That is why we are all here: we are trying to make this Bill safe for patients seeking assisted dying. Changing it from the Mental Capacity Act will make it less safe.
Sarah Olney
I heard Sir Chris Whitty in particular say that it would be preferable to have a more straightforward Bill that did not have too many bureaucratic hurdles for people to overcome. That was why he was keen for the Mental Capacity Act to be retained. However, I tabled the amendment precisely because, when people are thinking about whether assisted dying is an appropriate decision for them, I do not think that it is safe for them to be judged merely on the basis of their capacity. It is by no means my intention to increase bureaucracy; I am merely proposing that the Act is not sufficient in this case.
Naz Shah
Three psychiatrists gave evidence to the Committee in person: Professor Allan House, Dr Annabel Price, of the Royal College of Psychiatrists, and Professor Gareth Owen. All expressed doubts about the use of the Mental Capacity Act to assess whether a person was in a fit state of mind to undertake assisted dying. Does the hon. Lady agree that we should place great weight on the opinion of psychiatrists when assessing whether the Act should be used to assess applicants for assisted dying? It is a horse before the cart scenario, because the Act was not made for this context; when it was passed, we were not talking about the ability to choose to die.
Sarah Olney
I agree exactly with the hon. Lady’s point. The Act was not designed for this purpose, and it is essential that we carefully scrutinise whether it should be used in this way.
The Chair
Order. I remind hon. Members that interventions are just interventions; there will also be speeches.
Rebecca Paul
I welcome the hon. Member’s attempt to improve safeguarding in the Bill, which I agree is currently not at the right level. Does she agree that the Mental Capacity Act assumes in the first instance that, if there is no evidence to the contrary, a person has capacity, and that whether a person lacks capacity must be decided on the balance of probabilities? Unwise decision making does not indicate a lack of capacity, and supported decision making is considered to be acceptable. We need all to be clear that that is what the Act says.
Sarah Olney
The hon. Member is absolutely right. That would be another weakness of the Mental Capacity Act being used in this context: if someone is judged to have capacity, they are free to make an unwise decision, yet there is nothing in the Bill to provide a safeguard against people who might have capacity and make an unwise decision because their thinking has been obscured by mental illness, depression or something else.
Jake Richards
I have a few questions for the hon. Member. Who does she propose will decide whether a decision by someone who has capacity is wise or unwise? Does she also propose changing the law around patients’ refusing life-saving treatment? Should that be handled under the Mental Capacity Act, as it is at the moment?
Sarah Olney
I am grateful to the hon. Member for his intervention, but I am not proposing to change any legislation other than the Bill before us. All the other legislation to which he refers should remain precisely as it is, and for the purpose for which it was intended. He asks who is to say whether someone is making a wise or unwise decision; that is the job of the people who are instructed to provide assessments under the Mental Capacity Act. As was clear from my response to the hon. Member for Reigate, if someone has been assessed as having capacity, there must not be any further interference in their decision-making process, even if there are distinct concerns that that person may be deciding to end their life not purely because of their terminal illness but because they are suffering from depression. There is no other mechanism in the Bill to enable that further safeguard.
Dr Opher
I use the Mental Capacity Act almost every week in my work. As Chris Whitty said, in the majority of cases, whether someone has capacity is clear and indisputable. For a narrow proportion of people, it is more difficult to decide. The Bill takes account of that by using a panel to decide on those difficult cases of capacity. I would insist that most cases are very straightforward.
Sarah Olney
I have to ask the hon. Gentleman to clarify that. When he says he uses a panel, is he referring to the new amendment that has been proposed? I have not seen it yet and cannot comment on it, and have no idea if it will be adopted.
Dr Opher
If we are not sure about capacity, we must refer to psychiatry, so that a specialist organisation can make a more detailed assessment. However, most people do not fit into that category. Most people clearly have not got capacity or have got capacity, so this is a very narrow cohort.
Sarah Olney
If I may say so, the hon. Gentleman’s intervention precisely illustrates what other hon. Members were raising as points of order earlier. How can we properly scrutinise the legislation when new amendments are being tabled at the last minute that potentially change the entire nature of the legislation that we are attempting to scrutinise? It is very difficult then to speak about the amendments that have already been tabled.
Danny Kruger
Further to that point, the hon. Lady responded to the hon. Member for Stroud, who suggested that a doctor must refer to a psychiatrist in the event of concern over capacity. There is no such obligation in the Bill. There is the opportunity to do so—the second doctor may do so, if they choose—but there is no such obligation. That is something that we could definitely improve.
The hon. Member for Stroud, who is a GP, says that it is always obvious to him when there are issues about capacity. I assume he might think the same about coercion. I wonder if the hon. Lady is aware that one in six older people are subject to abuse—elder abuse. Does she think that the hon. Member for Stroud always spots the one in six of his older patients who are subject to abuse?
The Chair
Order. I remind everybody to stay within the scope of what we are talking about, which is capacity.
Sarah Olney
On that note, I will probably not respond to the hon. Gentleman’s comments about coercion, but I will pick up on what the hon. Member for Stroud said about using the Mental Capacity Act every week. I think that probably makes him unusual among MPs, if not GPs. I personally have no experience of using the Mental Capacity Act, which is precisely what gives rise to my anxiety. We in this room need to properly understand what the Mental Capacity Act means, yet most of us do not have the experience that he has in applying it. However, we are all collectively responsible for ensuring that the legislation is framed properly. I can only go on the oral and written evidence that we have received, and I am paying serious attention to all those who have said that they do not think that the Mental Capacity Act is sufficient. I lack the direct experience that the hon. Member for Stroud has of those matters, and that is the best that I can do.
Liz Saville Roberts (Dwyfor Meirionnydd) (PC)
We are discussing the balance of autonomy against considerations such as capacity and coercion. The Mental Capacity Act 2005 has been in existence for 20 years, so it has the advantage of being familiar. Would the hon. Lady agree that if we were to bring in clinical views from different professions, such as from doctors, social workers and psychiatrists, we would have different definitions in place, which would address some of the concerns about different applications?
Sarah Olney
That is an extremely wise observation. I regret enormously that there was not more opportunity, before the legislation was drafted, to have those discussions between experts, advisers and others who really know what the Mental Capacity Act means and whether it is sufficient for this purpose. The best that we can do now is reflect on the evidence that we have received. In many ways, that is what I am hoping to address with my amendment: to redefine “capacity” as “ability”, to transfer the responsibility for defining how ability should be assessed under the Act to the Secretary of State for further analysis and consultation, and then for that to be laid out properly.
When assessing people’s ability to make the decision, we want to take into account their ability to understand, retain, use and weigh information, and to communicate the decision. That will still be at the heart of an assessment of whether an individual is making the decision for the right reasons. A whole range of things might affect a person’s ability to make the decision. I have mentioned many times mental disorders such as depression, which is more common in people nearing the end of their life. Delirium, which is common in people with advanced illnesses, needs to be assessed. There is the complexity of people who have a physical terminal illness alongside a mental disorder; I think particularly of people suffering from an eating disorder, which is primarily a mental health condition but clearly has physical health implications. If the mental health condition is not treated or is resistant to treatment, the physical manifestation of the eating disorder can quickly become a terminal illness. That is a really important point that we need to reflect on.
The feelings of hopelessness that may come alongside a diagnosis of terminal illness may affect a person’s ability to weigh information. Anxiety can amplify their fears of future suffering, and types and doses of medication can affect capacity. All sorts of people can suffer vulnerabilities from external factors such as the lack of realistic alternatives like palliative care services; overt or implicit coercion; personal losses including bereavement; poor housing; financial hardship; and loneliness and social isolation. Understanding and responding to those vulnerabilities is at the centre of suicide prevention, but absent from the Bill.
We have to remember that the Bill would apply to people who are said to be within months of death but may not be, to those who may die within months but otherwise have a very good quality of life, and to people whose trajectories to death vary greatly. In his written evidence, Professor Allan House states that
“careful inquiry is justified because a statement about wanting to end one’s life cannot be simply taken as the result of a straightforward rational decision to choose one type of end of life care over others. Simply checking mental capacity and asking about coercion is not adequate.”
Tom Gordon (Harrogate and Knaresborough) (LD)
I understand the concerns my hon. Friend is raising about assessing mental capacity. Does she acknowledge that throughout this process mental capacity will be assessed not once but multiple times? What does she say to that?
Sarah Olney
I say to that what I have been saying throughout: a test of mental capacity is not sufficient for this Bill. For example, the Royal College of Psychiatrists states that the Mental Capacity Act
“is not sufficient for the purposes of this Bill. Extensive consideration needs to be given to what an assessment of mental capacity should consist of”
for decisions relating to assisted dying or assisted suicide—
“and, indeed, whether a determination through such an assessment can be reliably arrived at in this novel context.”
I believe that what the Royal College of Psychiatrists means by “novel context” is that no legislation of this type has been framed before and we do not have any precedent to guide us in terms of what an appropriate determination of capacity might be.
Dr Opher
I apologise to the hon. Lady for my continued interruptions, but I want to put across some important points. In our medical system, the Mental Capacity Act is currently used to test capacity in cases of withdrawing life support. Does the hon. Lady not agree that that is on the same level as assisted dying?
Sarah Olney
I have a suspicion that the hon. Gentleman may have made that point already in one of his many interventions. Withdrawing treatment is not the same as someone making an informed wish to have their death assisted. That is why we need to be very careful about considering whether the Mental Capacity Act is appropriate for that kind of decision. That Act is being used in a way it was not designed for. To use this definition of “capacity” is to accept the premise that this is just like any other treatment option and not qualitatively different, and fails to recognise the complexity and gravity of the decision.
The Bill also fails to consider that there may be a risk of assessor bias—that sometimes it may well be that a doctor who makes an assessment may well have their own views about the suitability of assisted dying as an option for that particular patient. They may be in favour of it, or they may be against it. If that were to sway them towards making an assessment against capacity, that could have lots of serious implications for the patient.
I have proposed amendment 34 because I think it is the best way forward at this stage, given the variety of evidence we have had and the real difficulty for us in this room of making an appropriate determination of the extent to which the Mental Capacity Act’s use may be modified for this purpose, or of coming up with something entirely new. I think the best way forward is to give the power to the Government—to the Secretary of State—to define the term “ability” in relation to this legislation at a later date.
Dr Marie Tidball (Penistone and Stocksbridge) (Lab)
With respect to the hon. Member for Richmond Park, I do not support her amendments, which seek to replace the references in the Bill to the Mental Capacity Act with the concept of “ability”. First, medical practitioners already know, regularly use and well understand the Mental Capacity Act 2005. As a result, as Professor Chris Whitty said in evidence, where practitioners conduct such an assessment of an individual separately, they are usually in agreement in their decisions about the outcome in relation to that individual. That was also mentioned by my hon. Friend the Member for Stroud.
Secondly, the term “ability”, unlike mental capacity, is not an existing concept in law that we can draw upon in the context of complex medical decision making about consent to medical treatment. I therefore do not accept that it is a low bar.
Dr Tidball
No, I will make some progress.
To replace the established concept of mental capacity with “ability” would create more problems than it seeks to solve, and is not underpinned by a clear statutory basis. Furthermore, the language the hon. Lady uses in her new clause 1 only echoes the wording of the second leg of the two-stage test in the MCA, in its language of fully understanding, using and weighing the relevant information. It does not, however, have the scaffolding and clarity of the five principles set out in the Mental Capacity Act, and it is a pale imitation of the second stage of the test of capacity, which is already in section 3 of the MCA.
Thirdly, the use and application of the Mental Capacity Act has been applied and litigated upon in our court system over the last 20 years, further nuancing its application in complex medical decision making and explicating, for example, the five principles in the MCA and the subsequent two-stage test for capacity. Contrary to what colleagues on the Opposition Benches have said already, it is used in cases where treatment is withdrawn. It is important to understand that in those circumstances, such withdrawal is not seen as an omission; it is seen as a deliberate act. It is therefore analogous to the usage in the Bill as proposed.
Fourthly, I have deep concerns that the use of the term “ability” and the concept expounded in new clause 1 imports an ableist approach, which I do not welcome, as someone who has worked in disability rights and policy for more than a decade and a half.
To return to my first argument, about the familiarity and usage of the Mental Capacity Act by medical practitioners, clinicians and the wider social care profession for two decades, many family members will be familiar with the term and used to using it as part of the wider care of people with learning disabilities, autism and mental health problems. The boundaries of those who are familiar with the concept go well beyond the walls of only medical practitioners.
In oral evidence, chief medical officer Professor Chris Whitty stated that the Mental Capacity Act
“is used up and down the country by doctors and nurses every day; they know it and they understand it. Although…it is a large piece of legislation, it is one that people have worked through in practice multiple times. If you ask six or seven doctors, ‘Does this person have capacity?’, in almost all cases you will get six or seven identical answers, because people are used to using it.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 33, Q7.]
To unleash the tiger of an unknown and untested concept of ability into a Bill that would benefit better from the well understood, measured and principled approach of the Mental Capacity Act 2005 does not best serve the patients that I know the hon. Member for Richmond Park seeks so carefully to protect. It is therefore worth laying out the paradigm that underpins the MCA and the principles it legislates for, and why it is so important to retain this at the heart of the Bill.
The presumption of capacity in the Mental Capacity Act exists because it is considered a fundamental principle of respecting individual autonomy, meaning that every adult is assumed to have the ability to make their own decisions unless there is clear evidence proving otherwise. This protects against unnecessary interference in people’s lives and ensures that they are treated with dignity and respect, even if they may have a disability or medical condition that could potentially impact their decision-making abilities.
I want also to reflect on the robust language in clause 2(3), which states:
“For the avoidance of doubt, a person is not to be considered to be terminally ill by reason only of the person having one or both of—
(a) a mental disorder, within the meaning of the Mental Health Act 1983;
(b) a disability, within the meaning of section 6 of the Equality Act 2010.”
That provision, the tightly drawn limit on the need for the person’s terminal illness to leave them with only six months to live, and the third stage of the test—using the Mental Capacity Act to understand their decision making—mean that we have a strong set of safeguards.
Dr Tidball
I will give way to the hon. Member for Richmond Park, who asked first.
Sarah Olney
The hon. Lady has moved on considerably from the point that I was going to make, so I took it that she was not going to take interventions. Although I would have liked the opportunity to respond to some of her points, I have kept my counsel. Since she has now given way, I want to make something of a point of order. The hon. Lady mentioned that she thought my use of the word “ability” was ableist, and I want to put on the record that I had absolutely no intention of it being interpreted in that way. I meant no offence, and I hope that the word would not have been considered in such a light. If that caused any offence, I apologise. I hope that the general meaning of the word “ability” is well understood in this context.
Dr Tidball
I am grateful to the hon. Lady for making that statement. That is not the assumption. As I will say later, the term “ableism” is very much grounded in a deficit model of disability, which assumes that somebody is not capable of doing something themselves—for instance, making important decisions—whereas the Mental Capacity Act starts from a different perspective: it presumes that the person will have the ability to do something until proven otherwise. That is why I feel that the concept of ability does not align well with what is needed in understanding and providing autonomy to people making very difficult decisions at the end of their lives.
Danny Kruger
The hon. Lady accurately quoted clause 2(3) about a person not being considered to be terminally ill “by reason only” of having a mental disorder or a disability. That word “only” is very important, as she acknowledged. Does she recognise that that explicitly allows for somebody whose judgment might be impaired by a mental disorder still to be eligible for an assisted death, because they would still be judged to have capacity under the terms of the Mental Capacity Act? That term “only” is in fact not a safeguard; it is an access to an assisted death for somebody with impaired judgment.
Dr Tidball
I appreciate the hon. Member’s intervention, but I do not agree. Taken together, the parameters around the six-month limit, clause 2(3) and the requirement for a mental capacity test cumulatively create a safeguard in the Bill.
Importantly, the MCA’s two-stage capacity test is already underpinned by robust safeguards, which address exactly the issue the hon. Gentleman raised. Stage one asks whether there is a disturbance or impairment in the person’s brain or mind, and stage two asks whether the disturbance or impairment is severe enough that the person cannot make a specific decision. That two-stage test already deals with the issue he raised. The references to the Mental Capacity Act in the relevant clauses of the Bill ensure, crucially, that we import that test too.
Elements of the language in the new concept of ability proposed by the hon. Member for Richmond Park appear to attempt to echo the second stage of the Mental Capacity Act test, as just described. That has four elements: understanding information about the decision to be made, retaining that information in the mind, using or weighing that information as part of the decision-making process, and communicating the decision by talking, using sign language or any other means. It is important to say that those core elements are built on the scaffolding of the five principles of the MCA, working in a progressive way.
Opposition Members talked about the unwise decision, but the principles in the Mental Capacity Act work collectively and cumulatively together. That is only one step, then, which is followed by the fact that decisions must be taken in the person’s best interest, and there is well-worn and well-trodden understanding of how we ascertain that. It is important that those things all work together. The issue is already addressed under the MCA; if we do away with the MCA, we lose not only the scaffolding of the five principles, but the important safeguards of the two-stage test.
Naz Shah
My hon. Friend made reference to that already being done, but where is the evidence that the capacity stage she talked about is actually happening? We had evidence from the Royal College of Psychiatrists and, as she said, Professor Chris Whitty. Where is the evidence that it is being done well, as things stand?
Dr Tidball
I do not have a list of the case law in front of me—I am sure it will be possible for that to be found for my hon. Friend—but it is done regularly. The Mental Capacity Act is used regularly in decisions about the withdrawal of life-support treatment. That is the case, and she is welcome to search for the case law.
Sarah Olney
The hon. Lady talks about the four tests and parts of the Mental Capacity Act; the point I was making was that we want to retain elements of the Act, although using it in its entirety is problematic in this context. The four functional tests about whether someone is capable of making a decision absolutely should be retained—as she said, that is well tested, it works well and people understand in a court of law exactly how to apply it—but some of the other elements of the Mental Capacity Act are problematic. That is why I seek to redraft “capacity” to “ability”—I accept that that might be a problematic word, but I hope the hon. Lady will take on board my earlier comments—and that is what is important. The hon. Lady is saying we should not take out those bits of the Mental Capacity Act that are valuable and important, and I agree.
Dr Tidball
I am pleased to hear the hon. Lady’s agreement. As someone who has worked in this space for a long time, I say that if she does not want to have the impact in law of putting in place a concept that would be ableist and take a deficit model of disability, we need those five principles that are already embedded in the Mental Capacity Act. We also need the stringent two-stage test, the second stage of which has the four elements that I set out. Only then can we be certain that we are approaching the paradigm of this complex and important decision making as one where we understand the autonomy and best interests of groups of people we all wish to best protect.
Dr Tidball
I will make some progress.
The concept set out by the hon. Member for Richmond Park is the bare bones of what is needed in the complex decision making required across various stages of the Bill. In such decision making, the MCA has a wide and well-used toolkit to determine capacity. That leads to my third point. The Mental Capacity Act has been applied and litigated in our court system over the past 20 years. The chief medical officer, Professor Sir Chris Whitty, said in his evidence that the Act
“has the advantage of being tested in the courts. That has gone as far as the Supreme Court, and the various ambiguities that were inevitably in the legislation have been clarified by senior judges. Therefore, to practitioners like me, it feels like a piece of robust and predictable legislation.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 33, Q7.]
He continued later:
“If there were no Mental Capacity Act, there would be an argument, which has been used for a long time, that the Bill would have to define what was meant with a fair degree of clarity.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 36, Q14.]
I do not see sufficient clarity in the hon. Lady’s concept as set out in the amendment.
At a later evidence session, Yogi Amin, a solicitor and partner at Irwin Mitchell, augmented Sir Chris Whitty’s argument by saying:
“I wholly recommend and support the idea…to defer to the Mental Capacity Act for capacity assessments. I have been working in this area for over 20 years, before and after the Mental Capacity Act came in, and I have done cases all the way up to the Supreme Court, as well as day-to-day different cases around the country. It is well understood how capacity assessments are done, and it is ingrained into the practice of practitioners generally and of legal practitioners in the courts.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 140, Q176.]
He continued:
“It is a well settled and understood approach to the law, and producing a new one would throw up a whole new conundrum, where people would be questioning how to approach it, etc. It is not broken—it works well.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 141, Q177.]
Finally, for further clarity, I will vote against the amendment because of the ableist assumption in both language and concept. Ableist language assumes that disabled people are inferior to non-disabled people and perpetuates deficit discourses about such groups. I believe that this does not take the approach that we see in the paradigm of the Mental Capacity Act, which puts disabled people’s choices, autonomy and control over their choices at the heart of this legislation.
Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)
I thank the hon. Member for Richmond Park for tabling the amendments. Fundamentally, I do not agree with them, but I am grateful for her good intentions. I understand the concerns that she has raised, and she makes an eloquent argument, but I fundamentally disagree.
In my view, the amendments would only lead to abandoning the well-established principles codified within the Mental Capacity Act. They would introduce a degree of woolliness and legal uncertainty by introducing of a new term that is, as yet, undefined. That would make the operability of the Bill so much harder and would move us away from the Mental Capacity Act, which has a heritage of some 20 years and is already well established in the use of advance directives around organ transplantation, the withdrawal of treatment and the decision to undergo major operations that can have life-changing or life-limiting consequences.
Danny Kruger
My hon. Friend says that the term “ability” is not yet defined, but it is set out quite clearly in new clause 1, tabled by the hon. Member for Richmond Park. It simply says:
“The person is to be considered as having the ability to make a decision to request assistance to end their life if they can fully understand, use and weigh the relevant information”.
It uses the language of the Mental Capacity Act on understanding and weighing information. The key distinction is that it does not allow for impaired judgment; it requires somebody fully to understand the information in front of them. It is very straightforward, and I do not think that it would be difficult to apply. Does my hon. Friend recognise that the terms are pretty clearly laid out?
Dr Shastri-Hurst
My hon. Friend makes incisive points clearly and concisely, as always, but I cannot agree. This is a short clause that is dealing with a hugely complicated issue that is presently codified within the Mental Capacity Act, which runs to some 183 pages. I do not think that it is as simple as saying that the new clause deals with the issue.
There is also the two-stage test, which determines both the functional ability to make the decision and whether that decision is impaired in any way. It would be an oversimplification to suggest that the provision as drafted would deal with those issues in a satisfactory way that would provide confidence not only—although most importantly—to those who are making a decision around an assisted death, but to the medical practitioners who are part of the process and the courts, which will have to grapple with the issues that will inevitably arise from a new definition.
Sean Woodcock
The Royal College of Psychiatrists highlights that a person’s capacity can change and is decision-specific. It therefore says that the Mental Capacity Act is not suitable for the Bill. What is the hon. Member’s response?
Dr Shastri-Hurst
The hon. Member is absolutely right that capacity can change. It is an evolving piece: someone’s capacity at one point in time will not necessarily be the same as their capacity on a future or a previous date. However, the whole purpose of the Bill is to put a series of mechanisms in place that assess capacity to ensure a robust decision-making process.
I should also mention that the Mental Capacity Act allows the capability of individuals to make an advance directive. Where they have capacity at a point in time to make a decision for a future date, capacity can be inferred at that future date for that decision. That is acknowledged within the 2005 Act.
Kit Malthouse
I have to confess that I am a little confused by the evidence to which my hon. Friend refers. Can he confirm that it is perfectly possible for me to be diagnosed with a terminal disease and make an advance directive, which may apply in three months’ time, that in those circumstances I would decline treatment and would wish to die at that point? The Mental Capacity Act is used to assess me in making that advance directive, having had my terminal diagnosis. If it is good for that decision, I struggle to understand why it would not be good for a similar decision to end my life in similar circumstances.
Dr Shastri-Hurst
As always, my right hon. Friend makes a very good point. The Mental Capacity Act allows for advance directives on a whole variety of choices, including withdrawal of treatment, decisions on care or financial elements, and decisions on having treatment as opposed to not having treatment. It creates that ability and it is deemed robust enough for those purposes. It must therefore follow that it is robust enough for the purposes of the Bill.
Sarah Olney
I just want to probe the hon. Member on the capacity to make a future directive. Is he saying that, under the terms of the Bill as drafted and its reference to the Mental Capacity Act, it would be possible to say, “I may not be eligible now—I may not even be suffering from a terminal illness—but at some future point, because I have capacity today to make this decision, I should like to choose assisted dying”? Would that decision then be honoured at that future date, without any further intervention or assessment?
Dr Shastri-Hurst
The hon. Member makes an interesting point, which I had already considered; in fact, I have tabled a new clause that would address it. It is not grouped with the amendments now before the Committee, but I will touch on it, if I may.
There is an argument that, if an individual with an advance directive has gone through the two-stage test in the Bill and then loses capacity, the advance directive should hold weight. My new clause 6 would deal with that point. Sections 27 to 29 of the Mental Capacity Act deal with exclusions from advance directives, including issues around voting rights, marriage rights and Mental Health Act implications. There may be a mechanism, for example, to exclude an advance directive that deals with assisted death, either through the Bill or through an amendment to the Mental Capacity Act. But I do not disagree with the hon. Lady; she raises an interesting point.
Danny Kruger
Is my hon. Friend suggesting—I think his new clause makes it clear, and I think my right hon. Friend the Member for North West Hampshire is making the same point—that it is inappropriate for an advance directive to authorise an assisted death? The Mental Capacity Act authorises somebody to decline treatment at a future point, so my hon. Friend is acknowledging that there is a difference between the principle of declining treatment and the principle of requesting an assisted death. Given his new clause, I do not imagine that my hon. Friend thinks that we should have advance directives that authorise an assisted death. If he acknowledges that, he must recognise that there is a distinction between declining treatment and requesting an assisted death.
Dr Shastri-Hurst
My hon. Friend makes a valid point. I have concerns about public confidence in the Bill without that additional safeguard, as this is such a consequential decision, but of course any advance directive would be predicated on having gone through those two stages first before capacity is lost. I feel that on this occasion additional tightening is necessary so that the public can be confident that a robust process has been gone through.
The MCA is a tried and tested piece of legislation used by practitioners up and down the country. The hon. Member for Stroud uses it every day in his practice; I have to say that I did not, but I was not consenting patients for surgery every day. Every time I did so, however, I had those conversations. Capacity lies on a spectrum: if I am doing major abdominal surgery, the level of capacity required to make a decision will be much greater than if I am removing a small bump or lump on an arm.
As well as having been tried and tested by medical practitioners, the MCA has been tested in the courts, as the hon. Member for Penistone and Stocksbridge said. It has been right up to the highest court in this land, it has been robustly tested and it has been found to be good legislation. The risk we now face is that it will be replaced not only with a new legal concept, but with an entirely different process for assessing capacity in this setting. Although there may be good intentions to improve the system, that will only add to the folly of it and overcomplicate the issue.
Kim Leadbeater
I am sorry that it has taken me a while to find the relevant provision of the Bill. The discussion on the advance directive is a really interesting one, and I am glad that we are having it. Is the hon. Member reassured that clause 18(4) is very clear that on the day that assistance is provided to a patient, a doctor has to assess once again their capacity to make the decision to end their own life, check again that there is a clear, settled and informed wish to end their own life, and indeed check everything again on the day, including capacity? I believe that that will negate the issue around the advance directive.
Dr Shastri-Hurst
The hon. Member makes a reasonable point. I agree with her on many issues, but on this issue I have some reservations. Clause 18(4) says:
“The coordinating doctor must be satisfied, at the time the approved substance is provided, that the person to whom it is provided…has capacity…has a clear, settled and informed wish to end their own life”.
Of course, under the wording of section 26(1) of the Mental Capacity Act, that decision can be made at an earlier time and deemed to have currency, once capacity has been lost, for its enactment at a later date. I think that there could be a minor tightening of the wording or reassurances from Government to address that, but it is an important point to raise and air.
The Chair
Order. Before we proceed any further, I remind hon. Members that we are discussing capacity and ability.
Naz Shah
I am just trying to understand what the hon. Member is communicating. Under the Bill, if somebody has anorexia, diabetes or kidney failure and has the capacity to make that decision because they meet the criteria for the capacity to refuse treatment, will that mean that they can decide to sign up to this option?
Dr Shastri-Hurst
The Bill is very clear in determining that it is for those who have a progressive illness, disease or medical condition that cannot be reversed by treatment. On my reading of the Bill, it excludes that category of individuals who choose not to engage with treatment that in ordinary circumstances would prevent the progression or deterioration of their condition. I therefore do not see it as analogous with the hon. Member’s scenario of someone who could have a long life expectancy if they had taken their treatment, but who chooses not to. That is not captured within the Bill, in my interpretation.
Naz Shah
I am struggling with this, because it is clear from the evidence from our witnesses that that is the case where somebody has anorexia, for example, and they make that choice. As has been referred to plenty of times in the context of the Bill, the Mental Capacity Act has been used, and is sufficiently used, for people to withdraw treatment. Personally, I think that that is a pretty false equivalence, because when a person’s life support machine is turned off, the decision is made not by the person receiving lifesaving treatment, but by their loved ones.
According to what we have heard this morning, if someone has the mental capacity to use the MCA to withdraw treatment for a condition, that will lead to a diagnosis of terminal illness. It could kill someone. If I refused to take insulin, and I was diabetic, I would have the mental capacity to say, “Actually, I’m not going to take this treatment, so can I make a decision?” I am just trying to check the hon. Gentleman’s understanding.
Dr Shastri-Hurst
With the greatest respect to the hon. Member, I think that she is conflating two issues. Someone can stop treatment under the MCA; over time, that will lead progressively to death, with some conditions—she gave the example of being a diabetic without insulin—but that would not be a terminal illness in reference to this Bill. The Bill is very clear that it is about an inevitable and progressive illness, disease, or medical condition that cannot be reversed by treatment. Diabetes, treated with insulin, is not a progressive condition that becomes a terminal diagnosis; it is terminal only by virtue of somebody refusing treatment, which therefore would not be captured within the Bill.
Rebecca Paul
I would like to understand why my hon. Friend thinks that diabetes could ever be considered reversible. It can be treated and managed, but surely we cannot turn back time.
Dr Shastri-Hurst
My hon. Friend makes a valid point—the Committee can see that I was an orthopaedic surgeon, not an endocrinologist. It is not necessarily a progressive condition; it is a condition that can be managed and maintained. It does not fall within the wording of the Bill. We are not talking about a condition that is inevitably progressive, and for which there is no treatment option available to pause, reverse or prevent its progression. We are talking about a relatively limited group of conditions that will inevitably lead to death when someone, for want of a less blunt phrase, has reached the end of the road in terms of their therapeutic treatment options.
Sarah Olney
I am conscious that the hon. Member for Ipswich sought to intervene before me, but may I press the hon. Member for Solihull West and Shirley slightly on his point? When I asked Professor Sir Chris Whitty during oral evidence whether there could ever be a defined list of conditions that he would define as terminal, he was very clear that there could not be. Someone may suffer from a range of conditions. Most people who develop cancer survive, so cancer is a terminal illness, but not for everybody.
The question of what is and is not a terminal illness is quite contested; it is not clearcut. As the hon. Member for Bradford West says, it is quite possible that diabetes could be a terminal illness if someone refuses treatment for it. I am not entirely clear why the hon. Member for Solihull West and Shirley is saying that it is clear from the legislation what is and is not a terminal illness. As we heard in oral evidence, it is not clear.
The Chair
Order. I remind Members that the Committee will discuss terminal illnesses, and extending the list relating to terminal illnesses, under a later clause. Let us remain in scope this morning and continue the debate on the amendments before the Committee.
Dr Shastri-Hurst
I will keep my answer very brief by saying that I will return to hon. Lady’s point when we come to the clause on terminal illness, when perhaps I can elucidate, improve and work on my responses in a way that is conducive to understanding.
Dr Shastri-Hurst
I am aware that the hon. Member for Ipswich is waiting to intervene.
Jack Abbott
I am grateful to the hon. Member; he has given way a number of times, and I am sure he wants to make some progress. To return to the scope of the debate—I am sure you will be delighted to hear that, Ms McVey—part of the rationale cited for making this change from “capacity” to “ability” is depression, and given what we are talking about, there is a very real possibility that someone will become depressed after diagnosis. In the hon. Member’s experience, are patients with a clinical diagnosis of depression currently deemed capable under the Mental Capacity Act of making potentially life-changing decisions about treatment or whatever it might be? Are there any scenarios in which he would offer or remove certain treatment because of their depressed state? What I am getting at is that there are a huge number of scales and considerations to factor in with depression, but does the Act allow us to look at those when it comes to depression?
Dr Shastri-Hurst
The hon. Member is right: there is a huge spectrum of patients when dealing with these complex issues, and it would be absolute nonsense to arbitrarily say that anybody with depression is unable to make an informed decision on any issue. There are individuals who have mild depression—indeed, I suspect that most people with a terminal diagnosis would have some form of depression or reactive disorder, whether formally diagnosed or not, because of their circumstances. That does not mean that they are unable to make a rational, informed decision; we have to look at each patient individually. The Act is a tried and tested piece of legislation that doctors up and down the country use every day. Doctors over the road in St Tommy’s will be using it at this very moment, and they are adept at knowing and sensing when they need to escalate, whether by getting the opinion of a psychologist or a psychiatrist, because they have concerns about underlying issues. The Act is a robust piece of legislation, and we should be using it to enhance this Bill, not introducing further complexity, which will only put us into a quagmire of uncertainty.
Danny Kruger
My hon. Friend does not want uncertainty, so perhaps he could answer this question very directly: would he be content to see somebody who is depressed, and indeed suicidal, successfully apply for an assisted death?
Dr Shastri-Hurst
My hon. Friend puts it with his usual candour. He asked a straight question, so I will give him a straight answer: I think there is a difference between somebody who is depressed and somebody who is depressed and suicidal. I have no personal moral objections if someone who has a terminal illness, who suffers from depression and who has capacity as set out through the two-stage test in the Mental Capacity Act, ultimately wishes to end their life because of their terminal diagnosis. If they are doing it because they are suicidal as a consequence of their depression, that is a different and distinct issue. We are talking about individuals who want to end their life because of their terminal diagnosis, not because of their mental disorder.
Jake Richards
I keep making the point that clause 9 adds a different element to this process. It says that, when undertaking the assessment, one of the two doctors
“may, if they have doubt as to…capacity…refer the person for assessment”
of their capacity by a psychiatrist. Does that reassure the hon. Member that there is a further layer of safeguards in this area?
Dr Shastri-Hurst
That is one of the additional safeguards in the Bill. This Bill has more in-built safeguards than any similar piece of legislation across the world. I think the hon. Gentleman makes a valid point: when a doctor has concerns about somebody’s mental state, they can escalate the case and seek further, specialist opinion.
Dr Shastri-Hurst
I will make some progress, if I may, because I think I have indulged your patience for far too long, Ms McVey.
I am cautious about introducing this new test. I may not have persuaded everyone, but I have set out my reasons. We risk making the system overcomplicated. We would move away from the well-established mechanism under the Mental Capacity Act and into tiger country, with untried and untested systems that the courts have not considered, which will inevitably lead to challenge. There is no need to do that, because we already have robust mechanisms in place and doing so will merely lead to ambiguity and potential complications.
This is not me reaching this conclusion in isolation. Of course, there will always be voices on different sides of the debate, and we can frame the evidence we have heard to favour one set of arguments over another. However, I am significantly persuaded by the chief medical officer, given his wide experience as not just a clinician but a public policymaker. In his evidence to the Committee on 28 January, he said:
“It is not clear to me what problem people are trying to solve by doing that,”
—he means moving away from the Mental Capacity Act—
“given that the Mental Capacity Act clearly makes the point that the more severe the decision, the greater the degree of capacity that has to be assumed before people can actually take that decision.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 37, Q14.]
It is that foundation that we are building on, and it is central to how these things operate in practice.
Although I understand the position of the hon. Member for Richmond Park, and I have a degree of sympathy with those who support the amendments, I invite them to reflect, in the time we have left for this debate, on whether the amendments achieve their stated aim. Do they make the Bill better or do they make it more complicated and convoluted? I say that they make it more convoluted and that, despite the best of intentions, they should not be supported.
Daniel Francis
My hon. Friend the Member for Penistone and Stocksbridge knows I am an ally on many of these issues, but I will humbly disagree with her on some matters. I am not a lawyer or a doctor, but like many people here I speak from lived experience. I speak as the parent of a learning-disabled child, so I see the kinds of decisions that have to be made day to day, and the kinds of arguments and conversations that have to be had with people who presume that my child has more or less capacity than she has. Believe me, that is a constant, daily battle for me and my wife.
My daughter has 12 words and a severe sight impairment, which makes it very difficult for her to make some of her decisions, as well as other complexities—predominantly her cerebral palsy, which caused a brain injury at birth. Therefore, in my own way, although I am not a lawyer or a doctor, I have become a bit of an expert on some of the capacity issues that people encounter day by day. This morning, as I do most mornings, I read to her the three choices for her breakfast. I give her a bit of time to think about them and then I repeat them. We get yes or no to those three choices, and that is the choice she makes. Because of her severe sight impairment, when I put those three options in front of her, I have to lift them up in front of my face so that she can see them; if I put them much lower down, she would not be able to see them and make a choice. She would be able to make the choice through pointing if it was within a certain range.
I have doctors calling my wife and me all the time, asking to have a conversation with my daughter, despite their having read the notes saying that she is an 11-year-old with 12 words and a severe sight impairment. I therefore query—I will refer to some of the oral evidence in a moment—how well some aspects of the Mental Capacity Act are currently being carried out. Equally, I deal with people who suggest that she has a greater level of capacity than she does.
I accept—I have had this conversation with the hon. Member for Spen Valley on a number of occasions—that this legislation would not be applicable to my daughter. However, we heard in evidence from Mencap that the vast majority of people with learning disabilities in this country are not in the same position. They are living their day-to-day lives, living in supported accommodation and making the kinds of decision we have discussed in this debate, such as buying coffee and going to the bank.
As a result of my 20 years as a councillor, and in the last 11 years since our children were born, I have become involved with a number of local disability charities, and I know the decisions that people make when their child is at that transition age. They are trying to understand the complexity of taking a power of attorney for a child, as well as other decision-making issues. I spend a lot of time with parents who do not put those measures in place, because they do not understand the complexity in terms of age. We could therefore have a young adult relying on doctors who do not know them and on a judge—I have not seen an amendment on that issue, so I am still talking about a judge—to make a decision about capacity.
Kim Leadbeater
I do not particularly have a question to ask my hon. Friend, but I want to pay tribute to him for engaging so positively with the scrutiny of the Bill and for the very personal experience he has shared with the Committee. I reassure him that I will do everything I can to work with him, as I have so far through this process, because his fears are real, and I hear them. We have a job to do through the Bill to solve the problems that exist for people who are dying, but we do not want to create other problems. I am happy to continue to work with him to ensure that we address as much of that as we can through the Committee.
Daniel Francis
I thank the Member in charge for her comments. That is the conversation we had when she invited me to join the Committee, and we will continue to have conversations as amendments come forward.
My concern is about some aspects of the Mental Capacity Act, which was not written for these scenarios, and the hon. Member for Richmond Park talked in particular about the statutory principles in it. I am not an expert on these issues, and my hon. Friend the Member for Stroud behind me is more of an expert on some of them. However, there is no obligation in the code of practice under the Act to consult carers involved in a person’s life. The code says:
“if it is practical and appropriate to do so, consult other people for their views about the person’s best interests”.
Therefore, given the way the Act and the code of practice are worded, there is no obligation in the scenarios I am discussing.
There is another issue I was going to raise before I took that intervention. Mencap does considerable hard work. At my local branch, there are many people whose parents are in their 70s and 80s and have cared for their child all their life. I am not being rude, but their child, who is in their 40s or 50s, does feel like a burden to their parents. They know the obligation their parents have to care for them for their whole life. I ask Members to consider what the Mental Capacity Act says: those adults are at a level of capacity to make decisions, but they have been supported in those decisions all their lives and do not—
Jack Abbott
We have spoken a lot today about further safeguards and provisions, beyond the Mental Capacity Act. However, I note that my hon. Friend has tabled amendment 339, which states that if a
“person has a learning disability or is autistic”
they
“must be provided with accessible information and given sufficient time to consider it”
and that, additionally, there must be a “supporter” or “advocate” with them. If that amendment was passed, would that satisfy some of my hon. Friend’s concerns about the Act?
Daniel Francis
I am hearing that that amendment will need some rewording, but it would address some of my concerns. I am working with Mencap, and further amendments will be tabled to later clauses of the Bill. I understand that one of our colleagues has also tabled amendments, which I welcome. However, I would still have concerns about the interpretation—and there are different interpretations—of the current code of practice when it comes to the involvement of carers and loved ones. Those concerns brought me to the place I came to on Second Reading. I did not seek to be the person standing here; indeed, a year ago, not only did I not believe that I would be a Member of Parliament, but I did not believe that I would be on this side of this argument. It is this particular point that has driven me to this position.
I will talk a little about evidence. The Law Society has a neutral position on the Bill, but it has said that, before the provisions become law, a comprehensive consultation should be undertaken to allow resident experts to share views on the appropriate definition of capacity for the purposes of the Bill. That is the position of the Law Society.
Kim Leadbeater
My hon. Friend cites some interesting observations from the oral evidence, and I welcome his doing so. I draw his attention to my amendments 186 and 198, which look at the training. This is something I feel passionately about. If the Bill were to pass, having gold standard training would be vital, as I said during that sitting. I will do whatever I can to embed that in the Bill, and I will certainly consider what that will look like in the instances that we are discussing.
Daniel Francis
I welcome that commitment and look forward to that discussion in due course.
Dr Hussain went on to say:
“Ultimately, I do not think the Mental Capacity Act and safeguarding training are fit for purpose.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 199, Q260.]
Professor Owen said:
“That conveys questionable confidence in the consent processes, of which mental capacity is part, in relation to the decision to end one’s life. It is significant evidence about the confidence that is out there among experienced practitioners.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 228, Q290.]
Dr Price said:
“I…refer back to Professor Gareth Owen’s oral submission, thinking about the purpose that the Mental Capacity Act was drawn up for and the fact that decisions about the ending of life were not one of the originally designed functions of it. We would need to think carefully about how that would then translate into a decision that was specifically about the capacity to end one’s life.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 268, Q349.]
Danny Kruger
I note the point about training, and of course we would all welcome the strongest possible training. As the hon. Gentleman implies, nobody has yet used the Mental Capacity Act to assess somebody for an assisted death; it would be completely uncharted territory for the whole system, including anybody providing training. How does he imagine that training might be designed to allow for the Mental Capacity Act to be applied in this case, when it would be completely novel?
Daniel Francis
As I say, I am not an expert on this matter from a legal or medical background, but those are the concerns that have driven me to the place that I am in.
Dan Scorer, from Mencap—as my hon. Friend the Member for Spen Valley knows, I was adamant that Mencap would give evidence to us—said:
“building on the previous question about the adequacy of the Mental Capacity Act, there is a question about the adequacy of training, awareness and compliance with that Act now.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 269, Q350.]
He clearly cited what many people know occurred during covid, with “do not resuscitate” orders and decisions being made on people’s behalf. That is what has driven me to this place, and that is why I will support the amendment. I also have further amendments on this issue later on down the line.
I completely understand what my hon. Friend the Member for Spen Valley said about training in relation to these decisions and scenarios. At the end of life, people should have autonomy and choice, but if that comes at the price of one person, in a borderline capacity decision that is made on their behalf, it will be one death too many.
Danny Kruger
It is a great pleasure to follow the hon. Member for Bexleyheath and Crayford, and I pay tribute to his powerful speech. I wish more people on our side of the debate and on the Committee had medical backgrounds, but I am glad that we have someone who has such direct personal experience of supporting people with learning disabilities. I am grateful to the hon. Gentleman for everything he said and I entirely agree with it.
I want to speak in support of new clause 1, tabled by the hon. Member for Richmond Park, to replace the use of the Mental Capacity Act with a new ability test. This goes to the heart of the Bill: it is absolutely crucial. Clause 3, which her new clause would replace, is in a sense the essence of the Bill. It is the shortest clause, but perhaps the most important one, because it determines the means by which somebody will be assessed to be capable of making this decision. It is a very important protection—and, at its simplest, this is a very confusing and complicated area. I will no doubt confuse myself in the course of my speech, but I have a simple observation to make, which the hon. Lady also made very well. We are dealing with the issue of impaired judgment; currently, under the Mental Capacity Act, it will be possible, through the terms of this Bill, for somebody whose judgment is impaired by virtue of a mental disability or mental illness to successfully apply for an assisted death. I do not think that is what the public want and I do not think it is what the House of Commons voted for. I think it is a misunderstanding of the principle of the Bill, which did win support on Second Reading.
The simple fact is that somebody’s judgment can be impaired under the Mental Capacity Act, but they could still have capacity. We have repeatedly heard points made about how the Mental Capacity Act applies in the normal conduct of life for disabled people—for people with mental disabilities. For instance, people can be anorexic, depressed or suicidal, and of course they can still consent to all sorts of decisions that affect their life, including medical treatments. A person can consent to have surgery on a broken leg while depressed; there is no difficulty whatever with that and of course that is appropriate. That is rightly the basis on which we currently judge capacity.
New clause 1 would build on the terms of the Mental Capacity Act. It would add to the principles of autonomy and of people being able to understand, use and weigh the relevant information. As I said in an intervention, the key point is that using this new test of ability would ensure that the person was fully able to do those things—fully able to understand, use and weigh the relevant information. In the case of impaired ability, they would not be considered to pass the test.
We hear a lot that this is the toughest Bill in the world, with the highest safeguards. It is worth pointing out that in Oregon, which this Bill is largely inspired by, there is an impaired judgment test. There is a capacity test similar to that in the Mental Capacity Act, but people are also required to demonstrate that there is no impaired judgment, and that is exactly what the hon. Lady is seeking to achieve. Her new clause would build on the terms of the Mental Capacity Act with these key principles about understanding information, but would ensure that it was a full understanding, with no impairment. It would strengthen the Bill without complicating it. In fact, it would significantly simplify it, because at the moment—this is the substantial issue with the application of the Mental Capacity Act—a huge complication is involved when we go into the forest of the MCA and try to apply it in these terms. When we try to navigate our way through the MCA in pursuit of an assisted dying application, there is a whole series of complications.
I will cite some of the evidence that we received. The Royal College of Psychiatrists, which we heard from, stated in its written evidence:
“It is the RCPsych’s view that the MCA is not sufficient for the purposes of this Bill.”
We also had evidence from King’s College London’s Complex Life and Death Decisions group, which is a group of world-leading professionals working on issues relating to the end of life. They say that use of the MCA for assisted suicide would be “an entirely novel test”. I note that the hon. Member for Penistone and Stocksbridge—and I think my hon. Friend the Member for Solihull West and Shirley—made the point that an “ability” test would be a novel term. I acknowledge that the term “ability” is not currently set out or recognised in law in the same way that capacity is, but as I said, it is clearly defined in new clause 1, as tabled by the hon. Member for Richmond Park. Of course it is going to be novel—we are talking about something that is entirely novel. Assisted suicide is a new measure that is being introduced, so of course we have to have a new measure by which we define who is appropriate.
Bambos Charalambous (Southgate and Wood Green) (Lab)
I am reading the text of new clause 1, and it is remarkably similar to the text of section 3(1) of the Mental Capacity Act, which says,
“For the purposes of section 2, a person is unable to make a decision for himself if he is unable—
to understand the information relevant to the decision,
to retain that information,
to use or weigh that information as part of the process of making the decision”.
It is not a novel concept—that wording is virtually the same as in new clause 1. I do not see why we need to have the new clause or the new definition, as it is already present in the Mental Capacity Act.
Danny Kruger
The hon. Gentleman’s intervention helps me to explain my point more clearly, which is that the new clause tabled by the hon. Member for Richmond Park builds on the terms of the Mental Capacity Act. It recognises the value of the terms, which have been well established in case law through the MCA—the ability to understand, use and weigh the relevant information.
The key difference is the word “fully”. The case law around the MCA allows for somebody to be deemed capacitous even though their judgment might be impaired. What is proposed in the new clause is the closing of that lacuna, so that it would not be possible for someone to get an assisted death if their judgment was impaired. That is the key difference.
It is also important to exclude the MCA because of the thicket of complications that it would entail. We have heard about the importance of simplification. A much simpler and better way to do the entirely novel thing that we are proposing, which is to authorise assisted suicide by the state, is to have a new definition.
Kim Leadbeater
I do struggle with that terminology. This is not assisted suicide by the state. The state is not involved. It is the person making an autonomous decision based on their choice at the end of life. I will say on the record that the term “suicide” is not accurate for the cases we are talking about. The people we are dealing with are not suicidal. They very much want to live; they do not want to die, but they are dying. It is important that we have that on the record.
Danny Kruger
I think it is totally valid for us to have this argument about terminology periodically. I will repeat the point that we have made before, which is that we are actually amending the Suicide Act 1961—or rather, we are disapplying that Act—in the process set out in the hon. Lady’s Bill. There is no getting away from the fact that we are talking about assisting suicide. I am afraid that I will continue to use the term, and I hope the hon. Lady will forgive me for that.
I am arguing that the MCA is a complicating factor in the process that is being proposed for the Bill; it makes things much more difficult and complicated. The point has already been made—the hon. Member for Richmond Park put it very well—that, in the case for the MCA, a lot of weight is being put on the evidence from Sir Chris Whitty, suggesting that the MCA works very well. I point out that Sir Chris made a significant mistake in his evidence, when he said that
“the more serious the decision, the greater the level of capacity that someone needs to have.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 30, Q3.]
There is no such requirement in the Mental Capacity Act. Of course, we would hope that doctors would take a serious decision more seriously than a trivial one, but there is no such requirement. I cite Alex Ruck Keene KC, who wrote to the hon. Member for Richmond Park after his evidence session; with the greatest of respect to Chris Whitty, the fact that he got that wrong does not inspire confidence in his comments that the Mental Capacity Act is well understood by doctors throughout the country. I very much echo that. We have had so much evidence on how the Mental Capacity Act does not work well in practice that I think it was regrettable for the chief medical to have made the Panglossian observation that every doctor interprets it in exactly the same way and it works perfectly everywhere.
The Mental Capacity Act does not detect coercion. We will discuss coercion more in subsequent debates, but that Act is certainly not the safeguard against it. Professor House made some comments to us about Down’s syndrome and about diagnostic overshadowing. That is a very important concept. I am afraid to say that it is frequently the case, regarding people with severe disabilities, that capacity—or, indeed, incapacity—is not correctly observed because the medical professional will not see beyond the more presenting of their conditions. Observing capacity in someone who does have disabilities is often mistaken; it is harder than it is regarding other people.
Lewis Atkinson (Sunderland Central) (Lab)
Can I clarify what the hon. Member is proposing by introducing a separate test for people accessing assisted dying? Say an individual is on a respirator at the end of their life. Under what the hon. Member is proposing, if they said, “Please turn this respirator off; I want to die”, he thinks that it is appropriate for capacity to be assessed under the Mental Capacity Act 2005, but somehow he thinks that that person should have a different legal test if they said, “I want to take a drug to end my life,” knowing full well that they would have exactly the same result.
Danny Kruger
The simple answer is yes, I do. I think it is a causatively different decision. In fact, this whole Bill entails causative differences between those decisions. I will come to that point more in a moment.
Professor Owen made an important point to us regarding capacity. He said:
“You might be talking about a kind of cognitive impairment that has not reached the threshold for a diagnosis of dementia; you might be talking about a kind of mood problem or an anxiety problem that is sub-clinical; or you might be talking about a level of intelligence that is not clinically a learning disability.”
He talked about
“pressure within a family, let us say, which is often not malign in its intentions, but it exists.”
and about situations
“where there is an impairment and also an interpersonal pressure”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 234, Q297.]
Although we are not talking at this point explicitly about coercion and family pressure, the issues around capacity and coercion are nevertheless intertwined, and it is often very difficult for doctors to determine what is really going on. Again, the challenges around capacity are intense.
The point has been made by hon. Members that under clause 9(3)(b), if the second doctor in the process is in doubt about capacity, they “may” refer the person to a psychiatrist, but the clause in fact refers to “a registered medical practitioner” who “has experience of” the assessment of capacity—so not a psychiatrist, but just someone who has experience, whatever that means, of the assessment of capacity. It is not totally obvious what that means. Amendment 365 has been tabled overnight by the hon. Member for Bath (Wera Hobhouse) which would mean that both the first and second doctor, and indeed the court, if we are allowed to have a court process, “must”—not “may”— refer the person to a psychiatrist. That is not just if they are concerned about capacity, by the way. The court, or whoever it is, must conclude that there is no
“impairment of judgment arising from a mental disorder or other condition”.
I very much welcome that amendment and I hope that we will pass that in due course.
Kim Leadbeater
On that point about clause 9(3)(b), as I think was mentioned earlier, an amendment has been tabled by the hon. Member for St Albans (Daisy Cooper)—an amendment that I would support and I hope the Committee will—that would indeed turn the “may” to a “must”, so that there has to be a referral to a psychiatrist if there is any doubt from either of those doctors.
Danny Kruger
That is excellent news. For the first time so far in the course of this debate, we have a strengthening of the Bill from the hon. Member. That is great news—we can chalk that up as a victory, and as good sense breaking out. I am grateful for that. Let’s see what more we can achieve.
The point that I want to make is that we are in the foothills of understanding the effects of depression, cognitive impairment and social pressure on the decision to end life. That is a point made strongly by a series of witnesses to us in both oral and written evidence: we are still very much in the early stages of understanding how capacity interacts with mental illness, disability and coercion. Then, into the mists of vagueness, we are proposing to insert this single clunking, clumsy question: “Is there evidence of incapacity?” I strongly suggest that the abuse of the Mental Capacity Act that we are seeing here is not a way of simplifying the process of ensuring that there are a small number of strong safeguards; it is a great complication of the process and introduces more complexity, as we see from the many additional things that clinicians should consider. That is in direct contradiction to the principle of the Mental Capacity Act, which simply asks the question: “Is there capacity?”
The point has been made that there is more to the Mental Capacity Act than simply the question of capacity. There are concepts of best interests and supporting decision making. As the hon. Member for Penistone and Stocksbridge suggested, it is a cumulative process. The Mental Capacity Act entails not only the question of capacity but the consideration of best interests and whether we are supporting the decision making of an individual. I am not sure how those terms apply in a situation of assisted dying. It is not similar or comparable to the sorts of decisions that the MCA is intended to apply to.
Lewis Atkinson
This touches on some of the evidence given by Mr Ruck Keene, particularly around the best interests decision. From my reading of this legislation, it is very clear that there is no possibility for someone to make a decision on behalf of or in the best interests of anyone else. As the hon. Member for Solihull West and Shirley mentioned earlier, there are a number of exclusions in the Mental Capacity Act. For example, someone is not able to make a best interests decision on someone getting married or adopting. Does the hon. Member agree that in order to have a guarantee, without any doubt, on the best interests point, an amendment could be included to clarify that nothing in the MCA would allow a best interests decision under this legislation?
Danny Kruger
That is absolutely right. I do not think best interests can apply in this case. That is why the Mental Capacity Act is being abused. As the hon. Member for Penistone and Stocksbridge said, it is supposed to be cumulative. We are supposed to consider all aspects of the Mental Capacity Act, and best interests should be part of a consideration—but how on earth does one make a best interests decision about somebody deciding to commit suicide? The hon. Gentleman is right that best interests are excluded in the Bill, so the Mental Capacity Act is not being used, except for this most basic, low-level bar to cross, which is the capacity decision.
Dr Tidball
For clarity, I agree with my hon. Friend the Member for Sunderland Central on what would strengthen the Bill. The exceptions only apply where the right and proper Mental Capacity Act process has been gone through and the person doing that assessment has arrived at the point that that person does not have capacity. It is only in that very narrow set of circumstances where they have determined that the person before them does not have capacity to make the decision at hand that they then go to the second look at whether making such a decision would be in the individual’s best interest. The specific exclusions listed in the MCA only apply in that stage.
What my hon. Friend the Member for Sunderland Central is suggesting is that we table an amendment that would add to the list of specific exclusions; that would further strengthen the two stages. First, there would be the full Mental Capacity Act tests that may determine that the person does not have capacity. Such an amendment would give us belt and braces in circumstances where the person does not have capacity. Under the Bill currently, the person would fall out of scope and not be able to seek assistance if it had been determined that they did not have capacity. A belt-and-braces approach would make sure that there is no circumstance in which it could be determined by a medical practitioner or any other that it was in their best interests to follow this course of action.
Under the Bill as currently drafted, those people who have not got capacity as a result of the Mental Capacity Act would not be able to have access to the provisions in the Bill. My hon. Friend the Member for Sunderland Central suggests that we augment that even further so that there can be no doubt that, where it has been determined that the person does not have capacity, following the Mental Capacity Act, we should also add a very clear exception—
Terminally Ill Adults (End of Life) Bill (Tenth sitting)
Wednesday 12th February 2025
(10 months ago)
Public Bill CommitteesTerminally Ill Adults (End of Life) Bill 2024-26 Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 12 February 2025 - (12 Feb 2025)
The Chair
Will everyone please ensure that all electronic devices are turned off or switched to silent? I like to maintain the flow of debate, so I remind everybody not to say “you” and “your”, as Members should speak through the Chair, and not to go out of scope. I will stop Members if that happens again today.
Clause 1
Assisted dying
Rebecca Paul (Reigate) (Con)
I beg to move amendment 23, in clause 1, page 1, line 19, after “coerced” insert “, unduly influenced”.
This amendment would include the absence of undue influence for the making of a person’s decision. This reflects the changes proposed in Amendments 24 to 33.
The Chair
With this it will be convenient to discuss the following:
Amendment 82, in clause 1, page 1, line 19, after “coerced” insert “, encouraged”.
This would add a lack of encouragement to the list of requirements for a person to make a decision to request assistance. This reflects the changes proposed in Amendments 83 to 92.
Amendment 113, in clause 1, page 1, line 19, after “coerced” insert “, manipulated”.
This amendment reflects the changes in Amendments 114 to 115 which require steps to be taken to establish that the person seeking assistance has not been manipulated by any other person.
Amendment 24, in clause 7, page 4, line 14, after “coerced” insert “, unduly influenced”.
This amendment is consequential on Amendment 23.
Amendment 83, in clause 7, page 4, line 14, after “coerced” insert “, encouraged”.
This amendment is consequential on Amendment 82.
Amendment 114, in clause 7, page 4, line 14, after “coerced” insert “, manipulated”.
This amendment requires the coordinating doctor to ascertain whether, in their opinion, the person has manipulated.
Amendment 25, in clause 8, page 4, line 37, after “coerced” insert “, unduly influenced”.
This amendment is consequential on Amendment 23.
Amendment 84, in clause 8, page 4, line 37, after “coerced” insert “, encouraged”.
This amendment is consequential on Amendment 82.
Amendment 115, in clause 8, page 4, line 37, after “coerced” insert “, manipulated”.
This amendment requires the independent doctor to ascertain whether, in their opinion, the person has manipulated.
Amendment 26, in clause 12, page 8, line 13, after “coerced” insert “, unduly influenced”.
This amendment is consequential on Amendment 23.
Amendment 85, in clause 12, page 8, line 13, after “coerced” insert “, encouraged”.
This amendment is consequential on Amendment 82.
Amendment 27, in clause 13, page 9, line 33, after “coerced” insert “, unduly influenced”.
This amendment is consequential on Amendment 23.
Amendment 86, in clause 13, page 9, line 33, after “coerced” insert “, encouraged”.
This amendment is consequential on Amendment 82.
Amendment 28, in clause 18, page 12, line 26, after “coerced” insert “, unduly influenced”.
This amendment is consequential on Amendment 23.
Amendment 87, in clause 18, page 12, line 26, after “coerced” insert “, encouraged”.
This amendment is consequential on Amendment 82.
New clause 5—Encouragement—
“(1) For the purposes of this Act, ‘encouraged’ means an act capable of encouraging suicide which would constitute an offence under section 2 (Criminal liability for complicity in another’s suicide) of the Suicide Act 1961.
(2) A person is not rendered ineligible to request assistance to end their own life on the basis of—
(a) an act of encouragement that they were unaware of when requesting and going through assisted dying, or
(b) an act of encouragement which was not specifically directed at that person.”
This amendment provides a definition of encouragement is consequential on Amendments 82 to 92.
Amendment 29, in schedule 1, page 25, line 22, after “coerced” insert “, unduly influenced”.
This amendment is consequential on Amendment 23.
Amendment 88, in schedule 1, page 25, line 22, after “coerced” insert “, encouraged”.
This amendment is consequential on Amendment 82.
Amendment 118, in schedule 1, page 25, line 22, after “coerced” insert “, manipulated”.
This amendment adds a requirement to the first declaration for the person to declare they have not been manipulated. It is linked to Amendment 113.
Amendment 30, in schedule 2, page 27, line 11, after “coerced” insert “, unduly influenced”.
This amendment is consequential on Amendment 23.
Amendment 89, in schedule 2, page 27, line 11, after “coerced” insert “, encouraged”.
This amendment is consequential on Amendment 82.
Amendment 119, in schedule 2, page 27, line 11, after “coerced” insert “, manipulated”.
This amendment requires the coordinating doctor to sign a declaration that to the best of their knowledge they believe that the person has not been manipulated. It is linked to Amendment 113.
Amendment 31, in schedule 3, page 28, line 9, after “coerced” insert “, unduly influenced”.
This amendment is consequential on Amendment 23.
Amendment 90, in schedule 3, page 28, line 9, after “coerced” insert “, encouraged”.
This amendment is consequential on Amendment 82.
Amendment 120, in schedule 3, page 28, line 9, after “coerced” insert “, manipulated”.
This amendment adds a requirement to the declaration that independent doctor has to sign, that they to the best of their knowledge they believe that the person not been manipulated. It is linked to Amendment 113.
Amendment 32, in schedule 4, page 29, line 5, after “coerced” insert “, unduly influenced”.
This amendment is consequential on Amendment 23.
Amendment 91, in schedule 4, page 29, line 5, after “coerced” insert “, encouraged”.
This amendment is consequential on Amendment 82.
Amendment 121, in schedule 4, page 29, line 5, after “coerced” insert “, manipulated”.
This amendment adds a requirement to the second declaration for the person to declare they have not been manipulated. It is linked to Amendment 113.
Amendment 33, in schedule 5, page 30, line 22, after “coerced” insert “, unduly influenced”.
This amendment is consequential on Amendment 23.
Amendment 92, in schedule 5, page 30, line 22, after “coerced” insert “, encouraged”.
This amendment is consequential on Amendment 82.
Amendment 122, in schedule 5, page 30, line 22, after “coerced” insert “manipulated”.
This amendment adds a requirement to the declaration that coordinating doctor has to sign, that they to the best of their knowledge they believe that the person not been manipulated. It is linked to Amendment 113.
Rebecca Paul
One of the major concerns that we have heard from members of the public and MPs relates to the importance of ensuring that appropriate safeguards are in place, so that people make genuine choices and do not request an assisted death because somebody else has pushed them towards it. For that reason, it is vital that subsection (2)(b) is as comprehensive as it can be. It currently refers specifically to a person having been “coerced” or “pressured”, which covers only the more direct kinds of influence, not more subtle ones. It seems clear to me that amendments are required to ensure that more subtle kinds of influence are covered adequately, and that clinicians do not just look for obvious signs of coercion or pressure when considering eligibility.
In her oral evidence on 29 January, Dr Mullock said:
“In terms of the Bill that we are discussing, one possible weakness here is that it identifies, only very obviously, problematic conduct in terms of coercion or pressure exerted by another person, and actually the kind of undue influence that might occur might be very subtle. More needs to be done to recognise that and the subtle encouragement that might take place, where a relative might frame their support for the person seeking to die in terms of, ‘This will be better for you,’ and, ‘Have you considered this?’ That is not necessarily an example of clear abuse, so when the person seeking to die then consults the doctor, they are not going to characterise what has happened to them as coercion or abuse. More needs to be done to discuss with the person whether or not they have been encouraged by the people around them.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 162, Q204.]
Amendment 23 would add the term “unduly influenced” to the clause. It is an important addition, as it is a recognised term in law. It is designed to ensure that relationships of dependence are considered. In some cases, there is no bad intent, but there is a power differential, subtle as it may be, and it is important that we recognise how strong it can be. A child not wanting to disappoint their parent; a wife not wanting to go against her husband’s wishes—there may well be no threats or explicit pressure, and there may be a lot of love shrouding it, but the influence is there and it is strong. That is why the concept is applied in probate cases to test whether someone has faced influence, domination or pressure that prevents them from exercising free and independent volition with regard to the act. It has also been applied in medical decisions, including over a refusal of treatment that can lead to death. For example, there was a case of a Jehovah’s Witness who refused a lifesaving blood transfusion under undue influence from her mother. It is therefore a natural addition to the Bill.
In important judgments, the courts have said that undue influence will have more impact on people who are very tired, in pain or depressed, and that
“a patient in a weakened condition may be unduly influenced in circumstances in which if he had been fit, he would have resisted the influence sought to be exercised over him.”
This legal concept could have been designed for the context of assisted dying. That is why it is important that the amendment is made. In her oral evidence on 28 January, Dr Cox said,
“I would say that you cannot always identify coercion. You can identify it when it is very obvious and extreme, but when it is very subtle, we cannot always identify it. After the event, there is nobody to tell us about coercion, so it is very difficult to monitor.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 73, Q90.]
I would also like to point out that California’s law prohibits coercion or undue influence, so there is established precedent in using this phrase in the safeguards of assisted dying law. If we have the ambition for our law—if it is to pass—to be the safest in the world, we need to add the term “undue influence” as a minimum.
Even with that additional safeguard, however, Dr Spielvogel rather worryingly said in his oral evidence,
“I have seen assisted dying laws go into practice across numerous states and have helped many, many people through this process, and I have never seen a case where I even suspected coercion.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 101, Q139.]
Richard Robinson of Hourglass, in his oral evidence, said,
“I think that coercion is underplayed significantly in cases of abuse of older people…One of the biggest issues we face is the fact that we have no idea of the levels of training that healthcare professionals and the judiciary receive to understand and recognise coercion. That leaves us in a situation where medical professionals say that coercion in these circumstances is minimal, but people need to understand what coercion is and how to recognise the signs of it in the first place, especially bearing in mind that the vast majority of cases that we see take place in the home and by family, rather than by professionals.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 158, Q196.]
Additionally, psychiatric and legal experts have said that undue influence is relevant in this context. In written evidence, Professor Allan House refers to undue influence as
“coercion in its less overt or threatening forms”.
He also draws attention to the great risk of undue influence in the case of couples seeking assisted suicide at the same time. The probate lawyer Tamasin Perkins, in an article on the Bill, says,
“Undue influence or coercion is depressingly common in the arena of contested wills and gifts.”
She suggests that the current law on undue influence could be usefully incorporated into the Bill. To those who worry that adding undue influence could make things more difficult for clinicians when assessing, I would say that it is absolutely right on something of this gravity that rigorous consideration is given to the possibility of undue influence.
I turn to amendment 82, which adds the term “encouraged” to coercion and pressure. This amendment is in line with Dr Mullock’s advice in both her written and oral evidence. It is important to note that encouraging suicide is currently a crime under section 2 of the Suicide Act 1961. It is also important to note that the Bill does not decriminalise encouragement, only assistance. Clause 24 decriminalises only the assistance component, not the encouragement component. Thus, if the Bill were to pass, encouragement of assisted dying would still be a crime. That is absolutely right and something that I fully support.
As encouragement of suicide is clearly recognised as a heinous crime, it surely must follow that when considering whether someone is eligible for such assistance to end their life, consideration is given to whether they have been a victim of such a crime. This feels like a rather basic safeguard that is missing from the Bill and must be rectified. As former Attorney General, Victoria Prentis, has written,
“maintaining the prohibition on encouraging suicide is key to protecting vulnerable people”.
She says it is a problem, though, that
“doctors and judges under the bill are not required to check whether the person’s decision is their own or whether they have been encouraged by others.”
She goes on to say that she hopes the Committee will support my amendment, and David Hughes—formerly of the Law Commission—says that keeping the offence of “encouragement” would help to prevent “insidious pressure”.
Tom Gordon (Harrogate and Knaresborough) (LD)
The hon. Lady uses the term “encouragement”. If I were in a situation where a loved one wanted to access assisted dying, and I said I supported their wishes, would that fall under the scope of encouragement? We do not want to end up in a situation where people who support their loved ones end up dragged through a legal process, when it is actually the case that they are there to enable their wishes, rather than pushing them to it. How would she differentiate between those?
Rebecca Paul
That is an important point. Obviously, case law becomes quite important in this. Supporting someone’s decision is very different from encouraging someone who was not in the place of wanting to go through with assisted dying. Again, these things do sometimes end up in the courts, because sometimes it can be a grey line. It is important that we have this protection. Right now, it is an offence to encourage someone to commit suicide, and we need to recognise that. That is the law right now.
Kim Leadbeater (Spen Valley) (Lab)
The hon. Lady makes an important point. The idea is that the Bill makes an exception to the Suicide Act. I fully support her point about the supportive nature of the conversations that would take place with families. If we use the word “encourage”, we are in danger of lacking clarity. Where is the line between encouragement and support? I would like her to expand on that, if she could.
Rebecca Paul
I do not think that we are trying to exempt something from the Suicide Act through the Bill; we are decriminalising something that is currently a criminal offence. Right now, it is a criminal offence to assist someone to commit suicide, and clause 24 decriminalises that. I totally support what you have done here, but your Bill does not decriminalise encouragement. I imagine that you have done that for very good reasons, which I support; we do not want people to be able to go round encouraging people to commit suicide. It is vital that there is protection for the vulnerable people we have talked about. You are absolutely right that what constitutes encouragement can be subjective and difficult to determine, but encouragement is already in the law, so we have to deal with it. It is already a criminal offence to encourage a suicide, so it does not make sense not to deal with it in this Bill.
Sean Woodcock (Banbury) (Lab)
I will do my best to abide by that, Ms McVey. My recollection of the oral evidence is that the practitioners from California made it very clear that there was not a great deal of coercion, but they had seen families put undue pressure on people to prevent them from pursuing assisted dying. Given human nature, I find it incredible that the pressure would go only in that way and not in the other. I see the proposals as ensuring that and safeguarding people who are at a very vulnerable stage of their lives. Will the hon. Lady speak to that?
Rebecca Paul
I completely agree. It is important to recognise that different people will have different views on levels of coercion. I have already quoted some of the witnesses; I found it quite jarring that certain witnesses who had facilitated assisted dying for hundreds—perhaps thousands—of people said that there were no cases of coercion. I find that difficult to believe, although I do not doubt for a second that they believe it.
Kim Leadbeater
The witnesses gave evidence in good faith, and I would be uncomfortable if we started to question the validity or truth behind their testimony.
Rebecca Paul
Just to clarify, I am not questioning that they were not telling their truth. I completely believe that, from their perspective, they honestly believe they have never seen a case of coercion. Maybe I am more of a glass-half-empty kind of girl than some other people, but I question whether that is really the case. In my 45 years on this planet, I have learned enough about humankind to know that these things do happen, but different people will take different views when it comes to detecting them.
Naz Shah (Bradford West) (Lab)
The hon. Lady has made some important points. I repeat something I said yesterday in response to another Member: the word “coercion” and the idea of encouragement were not even in the vocabulary in this place until very recently—only 10 years ago. I do not want to dismiss people’s expertise, but for me it is quite a leap of faith—I wonder whether she shares that idea—to believe that in that jurisdiction, zero people were coerced, when every other jurisdiction records people being coerced and people saying they feel a burden.
Rebecca Paul
I completely agree. The hon. Member has made some powerful points over the course of this Committee. The reality of the matter is, like the hon. Lady said, this has not really been considered fully until recent times. I think we are now all much more aware of the coercion and pressure that goes on. It is only right, when we are making this decision now, to be fully aware of that and have our eyes wide open to the realities.
At the end of the day, we are not legislating for when it works perfectly for that ideal candidate who absolutely wants to do this for all the right reasons and they are in pain, which is exactly what the Bill is designed for. We are legislating for that big group of people who are vulnerable, and who it may not work for. That is a much bigger group. We heard compelling evidence from Dr Jamilla Hussain, which really impacted me, about this big group of vulnerable people who could be detrimentally impacted. We must make legislation for the group that could be negatively impacted. They should be our focus.
Danny Kruger (East Wiltshire) (Con)
I am very struck by that last point. Does my hon. Friend agree that the purposes of these amendments build on the principle of the Bill? The Bill recognises the existence of vulnerable groups and attempts to introduce safeguards. It is not a free-for-all. The absolute purpose of the Bill is to ensure that vulnerable groups are protected.
My hon. Friend’s amendments support the principle of the Bill, which says that encouraging suicide remains illegal. By implication of the Bill, to encourage people to take an assisted suicide should be illegal too. My hon. Friend is actually building on the principle of the hon. Member for Spen Valley’s Bill, and I hope the Committee will not regard these amendments as in any way harmful to its purpose or as an attempt to make it more impractical in operation. They would make the Bill clearer. To the point made by the hon. Member for Spen Valley about overcomplicating things—I think the complications exist in the current text of the Bill, whereas my hon. Friend the Member for Reigate would be clarifying its purpose.
Rebecca Paul
My hon. Friend makes the point powerfully. I say to everyone in this Committee—we had this discussion yesterday—that I am not opposed in principle to the concept of assisted dying, but I see my role here as to protect the vulnerable. That is what I am trying to do, and I know everyone here wants to do exactly that. I cannot really see any downside to these amendments. Why would the Committee not want them included, if we want to protect the most vulnerable? Yes, it may put a bit more onus on clinicians, because they would need to look for a lower level of coercion. But that is absolutely right—of course they should have to do that. We are talking about assisted death. It is really important that we have a higher level of consideration.
Kit Malthouse (North West Hampshire) (Con)
I understand that much of the difference between us on this may founder on our perception of what is actually happening. She speaks of suicide, and to some of us—certainly to me—suicide is a healthy person taking their life, but what we are talking about is somebody who is seeking to take control of their inevitable death in these circumstances. For me, those two are qualitatively different.
I am concerned about my hon. Friend the Member for Reigate injecting an element of jeopardy into what should ordinarily be normal conversations with one’s family. For example, I could see a point at which, if I were in those circumstances and was thinking about seeking assistance to end my life, I would discuss that with my wife: “Darling, am I doing the right thing? Is it the best thing for the kids? I think I’m going to have a horrible death, and I’m trying to decide.” We heard from families—and have done over the last 10 years—who, very often in anguish support their loved one, even to the extent that they are willing to break the law. As my hon. Friend the Member for Harrogate and Knaresborough said, the line between support and encouragement is quite fine. If somebody were to come forward and say, “Well, I’ve spoken to my family. They all think I am doing the right thing”, could that not be interpreted as encouragement? I am conscious that we should not try to police what should be open and natural discussions between families in a way that injects jeopardy for them and the person to the extent that they might start to modify what they say to the doctor to ensure that they get the outcome they want.
Rebecca Paul
I thank my right hon. Friend for that very useful contribution. First, I am saying “suicide” because we are talking about the Suicide Act, and I cannot perform this role without naming the actual bit of legislation that we are talking about. I know people here are a little bit squeamish about the word “suicide”, but it has a clear legal meaning.
Rachel Hopkins (Luton South and South Bedfordshire) (Lab)
Will the hon. Member give way?
Rebecca Paul
Not yet; I am finishing my point. It has a clear legal meaning, and we must not put the blinkers on. I would suggest to Members that if they have an issue with the word “suicide”, they remember that this will actually result in the end of someone’s life. We must not be squeamish about using correct and accurate terminology in what we describe.
The second point made by my right hon. Friend the Member for North West Hampshire is a really good point: it is a fine line and it is really difficult. I have proposed this amendment not because I want “encouragement” specifically to be in the Bill, but because the encouragement of suicide is already a crime. I am being logical and taking what is already a criminal offence under the Suicide Act. If we do not include it in the Bill, it means that someone can commit a criminal offence against a victim, and that does not preclude the victim from being eligible for assisted dying, so I am suggesting a very logical amendment. My right hon. Friend makes a great point, but if we have an issue with the word “encouragement”, we need to take that up with the drafters of the Suicide Act, which was long before my time in 1961.
Sarah Olney (Richmond Park) (LD)
Does the hon. Lady agree on the value of her amendment, and the value of introducing the word “encouraged” into the Bill? Reflecting on what has been said about the “fine line” argument by the right hon. Member for North West Hampshire and the hon. Member for Harrogate and Knaresborough, the value of inserting this amendment is that, where it can be proven beyond doubt that someone has encouraged or actively sought to influence someone else to choose assisted death, that is a crime encoded in the law.
To the point made by the right hon. Member for North West Hampshire, in discussions among families about this possibility, and where spouses are supporting each other in this decision, it will never be demonstrated beyond reasonable doubt that a crime of encouragement has taken place. By putting it in law, where encouragement can be proven—and it must be proven—it can be prosecuted as the criminal offence that it would be.
Rebecca Paul
As ever, the hon. Lady so eloquently makes her point and I completely agree. I am not a lawyer but, given that the Suicide Act made the encouragement of suicide a criminal offence back in 1961, I imagine there is quite a lot of case law that would help define where that line is drawn on encouragement, but I would refer to better qualified people than myself.
Rachel Hopkins
I reassure the hon. Lady that her sweeping statement about us all being squeamish when talking about suicide may not be accurate. I would put it back to her: how squeamish is she when talking about assisted death, because we are actually talking about two separate things here? I reiterate the point made by the right hon. Member for North West Hampshire: a healthy person taking their own life by suicide is different from a terminally ill person, who is facing their death, ending their life by shortening their death. Would she accept that point?
Rebecca Paul
I am talking in legal terms, because we must use the right language. Under the law, I think what the hon. Lady said is not correct. I stand to be corrected by someone who is a lawyer, but given that we are amending the Suicide Act, I think technically an assisted death is the assistance of a suicide. I understand that the hon. Lady would like to reframe that and use different words to describe it. Maybe that could be done, but right now, under the law, it would be suicide.
Rachel Hopkins
If the Bill becomes law it would be a different situation, which is exactly what we are scrutinising.
Danny Kruger
What the hon. Member for Luton South and South Bedfordshire said is not the case at all. What the Bill would do is to exempt people who go under this new procedure from the operation of the Suicide Act. It would not create some new category of person; the law would just operate in a different way. I recognise that she is saying that, in her mind, there is a difference between somebody who is dying who has an assisted death and somebody who is healthy who commits suicide, but that is a completely arbitrary distinction in reality. Many people who have terrible diagnoses kill themselves, even though one might say that they are not actually dying and they could be treated. Should that person qualify?
Entering into the mind of someone who wants to take their own life is an absolute impossibility, and that is the whole problem with this Bill: we are trying to create distinctions that are impossible to police properly. It goes to the point of my right hon. Friend the Member for North West Hampshire about trying to police private conversations. That is what this Bill entails. We are inviting the state to intrude, in an absolutely impossible way, on what is going on in people’s minds. To go back to the point made by the hon. Member for Luton South and South Bedfordshire, there is no clear distinction between somebody who would choose assisted dying through a doctor’s prescription and one who would choose to take their own life without assistance. It is not possible to draw that distinction. In fact, we have seen so many times that people who might want to kill themselves one month change their mind a month later. I am afraid that this is the challenge with the whole Bill.
Rebecca Paul
I support my hon. Friend’s comments. Outside of this place, I speak about this topic in a manner that is as sensitive as possible. When we are talking about the legislative changes that are needed to this Bill and how it interacts with other legislation, I will use the correct legal terminology, because I think it is really important that we do that.
Dr Marie Tidball (Penistone and Stocksbridge) (Lab)
I appreciate the hon. Lady raising the need to use accurate legal language. Does she agree, therefore, that introducing “undue influence”, which is used regularly in the law of equity but not in the criminal law, would unhelpfully complicate matters, considering that coercive behaviour is defined in section 76 of the Serious Crime Act 2015 where it provides for an offence of controlling or coercive behaviour in that context? We have 10 years of case law. The hon. Lady rightly pointed to the importance of looking at case law and at how courts have dealt with this; the understanding of coercion in the criminal law offences is well known and well rehearsed, whereas the use of undue influence in the context of criminal law offences, which is what we are dealing with in clause 26, is not.
Rebecca Paul
I thank the hon. Lady for that point, but I do not think we are talking about criminal law here. This debate is not relevant to clause 24—it is relevant to eligibility. We are simply saying, through this amendment, that if a clinician thinks someone has been unduly influenced, they would not be eligible. I think the hon. Lady is crossing over to the encouragement point, but these are separate points.
Rebecca Paul
I am sorry, but I am going to give way to the hon. Member for Bexleyheath and Crayford, if he still wishes to intervene, as I am aware that he has been waiting.
Daniel Francis (Bexleyheath and Crayford) (Lab)
I want to bring us back to the points raised by the right hon. Member for North West Hampshire. I may have misread this, but I understand that, under the current law and under the law as it would stand if this legislation were introduced, it would remain an offence to encourage somebody to commit suicide with a 12-month diagnosis—perhaps someone with motor neurone disease or Parkinson’s disease, who may still be a loved one. I do not understand the counter-argument about not using the word “encouraged”: it would remain a criminal offence, unless I am mistaken, to encourage someone to take that decision if they had a diagnosis of longer than six months left to live.
Rebecca Paul
That is exactly right. As I have mentioned, I am not bringing in the concept of encouragement; it is already in the law and currently an offence. I am putting forward this logical amendment in order for the Bill to deal with that. If we do not do that, we have not circled the wagons.
Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)
I have no doubt that my hon. Friend speaks to the amendment with very good intentions due to genuine concerns about the safeguards. We have talked a lot about coercion. Clause 1(2)(b) sets out a requirement that the person,
“has made the decision that they wish to end their own life voluntarily and has not been coerced or pressured by any other person into making it.”
“Pressured” is an important word. If we look at the case law, there are the comments of Lord Nicholls in the case of Royal Bank of Scotland plc v. Etridge (No. 2) in 2002. He looked at two components of the concept of undue influence. There are acts of improper pressure or coercion, such as unlawful threats, which fit with the coercion element of the Bill as drafted. There are also relationships where one has acquired over another a measure of influence or ascendency, of which the ascendent person takes unfair advantage without any specific acts of coercion. Could my hon. Friend set out why she thinks “unduly influence” would add something beyond what “pressured” already does in the Bill?
Rebecca Paul
My hon. Friend is very knowledgeable about these things and is well qualified on the legal side. I value his contributions on this matter. The reason I want to include “unduly influence” is because it deals with those more subtle forms of coercion. Arguably, it could be included in “coerced or pressured”, but by including “unduly influence” in the Bill it becomes more explicit that a clinician has to be looking for it. In the absence of the language, clinicians will not be required to look for those more subtle forms of influence.
The provision is something that is included in the assisted dying laws of other jurisdictions. We have the opportunity here to learn and benefit from jurisdictions that have already implemented it. We heard various witnesses give us very useful evidence during the sessions. For example, California includes “undue influence” in the law. We should recognise that there is value in including it here. It is a well-established legal term that is used in myriad situations, so it is relevant that we include it.
Naz Shah
May I take the hon. Member back to the point of clause 24, and the issue of suicide and the terminology there? Perhaps the Minister could respond as well, although I am not sure how that would work in this Committee. What I think we are doing in clause 24 is to decriminalise encouraging suicide. That is my understanding. So can we have some clarity? Are we trying to decriminalise encouraging suicide? That is what clause 24 says, so in that case it would be absolutely right to talk about the word “encouragement”.
Rebecca Paul
Clause 24 decriminalises assistance to commit suicide, in order that assisted dying becomes lawful. It does not specifically decriminalise encouragement, which means that the Suicide Act 1961 still applies if someone were to encourage someone to commit suicide. It would therefore be a crime and have a sentence associated with it. However, the hon. Lady makes a really good point: it would be of great value at the relevant time to hear from the Minister on the legal point I am making. I hope everything I am saying is coherent and sound, but it would be useful to hear from the Minister.
Kim Leadbeater
The hon. Lady is doing an amazing job—and taking lots of interventions. As I have always said, I am very open-minded to whatever we need to do to make the Bill more robust. I am not a lawyer, like the hon. Lady—we have lawyers in the room, fortunately, who can provide guidance and assistance in that regard—but what has been made clear to me is that the law needs clarity.
The hon. Lady has already mentioned a couple of times that this change could be described as a lower level of coercion, or it could be argued that there is a lack of clarity there. I think the sentiment is absolutely right, and I really support that, but we need the law to be clear. And if legal colleagues are assuring us that the concept of undue influence would be covered under “coercion”—and I am kind of hearing that—then I think it would be covered. I think that point about the law being clear is really important. Does the hon. Lady agree with that?
Rebecca Paul
I thank the hon. Lady for that intervention. I know that she is wholeheartedly seeking to make sure that the safeguards in the Bill are as good as they can be, so I very much appreciate her recognising the positive intent behind my amendments.
It would be useful to understand whether those who are legally qualified believe that undue influence is already covered by “coercion”. I am not qualified to give a view on that, but if that were the case, that would provide some reassurance, and that could then maybe be included in guidance. However, I would want to see a legal opinion on that.
In the absence of such a legal opinion, putting that on the face of the Bill is the safest—and the right—thing to do at this point in time. I suspect that we will be voting on this shortly, before we can get a legal opinion, and given that we are talking about safety here, I would rather go for belt and braces and include “undue influence” on the face of the Bill.
Lewis Atkinson (Sunderland Central) (Lab)
Can I just clarify something? As my hon. Friend the Member for Penistone and Stocksbridge said, I understand that “undue influence” has an existing meaning, but only in equity law. The hon. Lady herself mentioned wills, for example, being challenged in probate. There, as I understand it, the burden of proof rests fully on the person challenging the will; there is not an active test that someone has not been unduly influenced. If the hon. Lady is to use undue influence as an existing legal concept, would she favour reversing the presumption on the burden of evidence? In addition, I think there is a distinction between actual undue influence and presumed undue influence in the case law. I wonder which of those she thinks we should be using when considering this amendment.
Rebecca Paul
I thank the hon. Member for that intervention. I think the point on probate is right; it is commonly used there, but it is not just used in that situation. My understanding is that, when it comes to decisions by clinicians with regard to withdrawing life-sustaining treatment, undue influence is one of the considerations.
Danny Kruger
Just to amplify that point, my hon. Friend is absolutely right. In the “Re T” case, the Court of Appeal judged that undue influence should be taken into account in medical decisions, so that is an existing principle in law. It feels totally appropriate to bring that in here, seeing as, as we have discussed, the principle already exists that it is wrong to encourage suicide, and that it is possible to have undue influence without coercion or pressure being present. To address the point made by the hon. Member for Spen Valley, I do not think those terms are adequate to include undue influence; undue influence can exist even when there is no evidence of coercion.
Rebecca Paul
I thank my hon. Friend for that intervention. The point that I would make is about an example that we talked about a lot yesterday, so I know that it resonates for many on the Committee. If someone is making a decision and a treatment is being withdrawn, or life support is being turned off, undue influence is already one of the things they consider, so when we are considering assisted death, surely, in order to be consistent, we would apply undue influence to that as well, rather than having a lower level. Why would we have a lower threshold for assisted dying compared with withdrawal of treatment?
Sarah Olney
The hon. Members for Sunderland Central and for Penistone and Stocksbridge said of existing concepts in law, “This is how they have always been used.” It was reminiscent of the conversation we had yesterday about the Mental Capacity Act 2005, and mental capacity being an established concept in law, and “This is the way that it is always applied.” Does the hon. Lady agree that although precedent and established usage are extremely important, the Bill is quite a novel piece of legislation, and it is really incumbent on us as a Committee to ask ourselves whether we need to approach this piece of legislation in a different way, compared with other pieces of legislation that have gone before; and whether, just because something has always been used in a particular way, it is still appropriate for it to be used in that way for this legislation, as a general principle?
Rebecca Paul
I completely agree. If we do not incorporate undue influence, we are at a lower threshold compared with withdrawal of life-sustaining treatment. That does not feel to me like the right position, but equally, this is a novel bit of legislation and we need to increase the safeguards further. Obviously, we shall be debating numerous amendments whose purpose is to raise that threshold. It is always very hard—how long is a piece of string?—to know exactly where to set a threshold. Different people have different views. My personal view is that in this Bill the threshold is too low, so we need to raise it by agreeing some of these amendments. So far, none of the amendments that have been suggested has been accepted. I really hope that during this Committee stage we will increase the safeguards.
Kim Leadbeater
Hopefully this will be my final point on this subject. I believe there is consensus in the room; no one is saying that undue influence is acceptable. The question is, where does it sit within the Bill in terms of definitions? That is where I would appreciate, along with the hon. Lady, advice from legal experts—and indeed the Minister—around whether we are confident that with the concept of coercion we are including undue influence. Does she agree that that clarity would be helpful?
Rebecca Paul
I absolutely agree that such clarity would be very useful. The hon. Member and I both want to ensure that undue influence is captured somewhere; I am less picky about where. As long as it gets covered somewhere in the Bill, that would be an improvement to the Bill, and I hope that everyone would really welcome that. I think everyone recognises the issue. I am not hearing that people are opposed to this; they recognise that there can be more subtle forms of coercion. If we can work together to find the best place for that to go in the Bill, I am very open to that.
The Minister of State, Ministry of Justice (Sarah Sackman)
It might help if I offer—with the usual caveat that of course the Government are neutral—the Government’s position with respect to what the hon. Lady has been discussing. It is important to point out that the terms “coercion” and “coercive behaviour” and “pressure” that are used on the face of the Bill appear in existing legislation without statutory definition. In other words, they are given their ordinary meaning and they operate effectively in that manner in the criminal law. The hon. Lady is absolutely right that clause 26, which we shall come to in due course, is a separate matter, but of course it will be important to review the Bill as a whole and to understand the interaction between the different provisions in clause 1, as we trace it through to the criminal offences.
It is the Government’s view that manipulative behaviour or undue influence—the terms that the hon. Lady is using—would come within the normal meaning as understood in case law by the judiciary of the terms “pressure” and “coercion”. In terms of the integrity of the statute book, there is a concern that by adding additional terms, we run the risk of creating confusion, because when it comes to the interpretation of those provisions, judges will be looking to understand and ascertain what Parliament meant by “undue influence” that was not currently covered by coercion. Given that those terms are commonly broadly interpreted, it is the Government’s view that the sorts of behaviours that the hon. Lady is describing—“undue influence”—would be covered by the terms used on the face of the Bill. For simplicity, given that our existing body of law interprets those provisions widely, and to ensure consistent application of the law in this context and other contexts where coercion arises, it is important from the Government’s point of view to retain the Bill’s current wording.
Rebecca Paul
It is helpful to understand the Government’s position. If the amendment is not made, I hope that the Minister is right, but one thing that I have learned in my time is that different judges will have different views on these things. Personally, I would prefer to see this provision in the Bill, as it would absolutely ensure that the protection is in place. We all know that decisions in the courts can sometimes go a different way from what we expect.
Naz Shah
I have a concern about what the Minister says. As one psychiatrist put it, the Bill is very novel and untested. The MCA has not been tested. Now the Government say that this will work, without consultation or any impact assessment. I struggle to understand that. Does the hon. Lady share my concern that this does not feel right?
Rebecca Paul
It is reassuring to hear that I am not the only one worried about this, so I thank the hon. Lady for that.
Danny Kruger
I understood the Minister to say that the judge needs clarity when they come to adjudicate on a case. We have heard through the media, although an amendment has not yet been tabled, that a judge will not oversee the process. Does my hon. Friend share my concern that we are setting up a legal system that will not provide proper legal oversight of the proposed measures?
Rebecca Paul
My hon. Friend’s point goes to the heart of the case, and to the point that I made earlier: it is extremely difficult when the Bill is a moving feast. We are tabling amendments to the Bill as drafted, but if substantial changes are made, that will impact some of what we did earlier.
Kim Leadbeater
We are looking at different amendments as the Bill progresses, but a judge would always be involved in criminal offences, which is what we are talking about now.
Danny Kruger
This is a very helpful conversation, and I am grateful to my hon. Friend for allowing all these interventions. It is right that there would be a judge in the event of a criminal offence. We are trying to ensure that we do not get to that point by insisting that in the early stages of the process, when a doctor makes their assessment—indeed, when a judge makes their assessment, if there is still that judicial stage, as we hope there will be—they are required to ensure that there has not been undue influence. It is important that, at that early stage, they are asked to check not just whether there has been coercion. I hear what the Minister says about the concept of undue influence hopefully somehow being incorporated in the definition of coercion or pressure, but we need to ensure that that test is applied at a very early stage. The first people who discuss the matter with the patient should ensure that there has been no undue influence, which by the way is about much more than outright coercion; it is about an imbalance of power in the relational dynamics within families, which as we all know can be very complicated. That is what necessitates the amendment.
Rebecca Paul
I completely agree with my hon. Friend. As always, he makes the point powerfully.
Naz Shah
Does the hon. Lady share my concern? My understanding is that, in normal parliamentary business, if the Government announce any changes to the law in the press first, they are usually rebuked by Mr Speaker in the Chamber. I appreciate that this is a private Member’s Bill, but a Guardian piece yesterday outlined how we will now scrap the involvement of a High Court judge and have a panel instead, with an amendment to be tabled to that effect. I am happy for my hon. Friend the Member for Spen Valley to clarify how the system is going to change.
Once we have debated the amendments on undue influence and coercion, we have debated them. We cannot then come back to them, because of the nature of private Members’ Bills. Does the hon. Lady share my concern that, as we said yesterday, the horse has bolted? We are having to go over things and we might not be able to revisit this issue, which is why it is even more important to have probing conversations on the record so that, if nothing else, we can refer to them on Third Reading, for which we have only five hours.
Rebecca Paul
I completely agree with the hon. Lady. We should not make the mistake of assuming that certain amendments will be accepted. Until there is a Division, we do not know what the Bill is going to look like. It is incredibly difficult to table amendments early on when we do not know whether other fundamental things are going to change. That is why it is important that we are really thorough and improve the safeguards as much as we can, clause by clause. I do not want to get to the end of this process without our having accepted any of the improved safeguards, only for the Bill to be turned on its head at the end when there is a Division on something fundamental. As the hon. Lady rightly says, we do not get the opportunity to come back and review the decisions we have made on the back of that.
Sarah Olney
Further to the point made by the hon. Member for Bradford West, is it not a further complication that if a question is put in Committee and considered settled, it cannot be revisited on Report by any other Member outside the Committee? It may well be the case that amendments that are accepted further down the line fundamentally change the nature of the Bill, and Members who are not on this Committee will be prevented from revisiting questions in respect of the early clauses because the matter has been discussed in Committee, is considered settled and cannot be revisited on Report.
Rebecca Paul
As a new MP—there are many in the room today—I am still very much learning the process; we have to contend with not quite understanding how the full process works. In two years’ time, I think that I and many other new colleagues would be in a different position and would fully understand all the interactions and the subtleties of the legislative process. But it is a challenge I have, which is why, right now, I will always table the most robust amendments that I think will safeguard the most vulnerable in our society.
Dr Simon Opher (Stroud) (Lab)
I would like to bring the Committee back to a certain amount of reality. What we are talking about is how we can assist clinicians to assess coercion and pressure. I like the way we have discussed this in a very good way, trying to make the Bill safe, but would the hon. Lady’s amendment make that any easier for the clinician? I do not think it would. The Bill is very clear as it is. I do not think there will be any implications if there are further amendments, because the Bill provides a statement of what we do; as a clinician, I would understand and be able to apply that.
Rebecca Paul
The hon. Member is absolutely right that the amendment would not make it easier for the clinician. My job is not to make it easier for the clinician to determine that someone is eligible for assisted death. It should be a robust, rigorous and well-considered process.
Liz Saville Roberts (Dwyfor Meirionnydd) (PC)
I find the hon. Lady’s point about the mechanism by which we are making this legislation to be very pertinent. I have been here for almost 10 years. As somebody from a small party, I suspect we are all experiencing how Bill Committees work from the outside, if you like. We need a note of humility. On the one hand, we are all here trying to make this Bill a piece of legislation that is as watertight as possible. That very much then comes over to the Government; I know we are here on a private Member’s Bill because of the nature of the ethical question with this Bill, and I am very comfortable with that, but none the less there is an immense responsibility in the next stages with the questions we raise. Perhaps it might be an idea not to push this question to a vote—although I leave that entirely to the hon. Lady—because that keeps the matter alive. There is an immense responsibility on the Government to listen to the issues that we can only touch upon here and to ensure they are all sewn together.
Rebecca Paul
I thank the right hon. Lady for that really helpful intervention. That is exactly the kind of advice that is extremely useful to us new MPs undertaking this process. I will have to make the decision on that question in a matter of minutes, and it is very difficult, but I will do my best to make the right decision.
New clause 5 seeks to define encouragement for the purposes of the Bill and includes some exclusions. We have already talked about some of the challenges with exactly what encouragement means, and clearly there are certain acts that we do not want to be captured by it. The aim of the clause is just to ensure that it is only intentional, targeted and effective encouragement that is covered. I am very open to working with the Government to ensure that the drafting reflects the intent; it may well be that some other things go in there to address some of the concerns raised by my right hon. Friend the Member for North West Hampshire around support being given by families. No one wants to see that included in this definition—I think we all agree on that.
In summary, I hope hon. Members will view these amendments, incorporating undue influence and encouragement into clause 1, favourably, in order to bolster the safeguards in this Bill. It is vital that subtler forms of influence are addressed, to protect patients and to ensure that it is not just the obvious signs of coercion that are looked for. I also welcome amendment 113, tabled by the hon. Member for Broxtowe, which is very much in the same spirit as amendments 23 and 82 and would insert the word “manipulated”. I hope we will debate it because, if accepted, it would certainly improve the safeguards in the Bill.
Naz Shah
It is a pleasure to follow the hon. Lady. Just to put it out there, to begin with on amendment 23, the Court of Appeal, in the case of “Re T (Adult: Refusal of Medical Treatment)”, held that undue influence was relevant to medical decisions and said that doctors must check for it. Undue influence is about power imbalance, rather than outright coercion.
That brings me nicely on to the points we discussed in some detail yesterday. The right hon. Member for North West Hampshire talked about having a conversation with his family, with his wife and children and so on. I will give another example. Say there is a woman who has been the victim of domestic violence—we know this happens; we know two women a week are killed in this country, to this day—and she is subtly encouraged: “Sweetheart, you’ve got a diagnosis and the option is to have this.” There is a fine line, and the fine line conversation has been mentioned quite often as well, but I would rather stay on the side of caution with that fine line conversation when it comes to domestic abuse, coercion and the power imbalance in a relationship.
Let me come back to that woman or elderly person whose loved ones have the conversation—and they indeed have the conversation; it happens every day. Ask any victim of domestic violence. On average, it takes a woman 40 attempts to leave an abusive partner—that is the fact—because we do not even recognise it.
I know somebody who recently left an abusive partner—that took three years of encouragement because she did not recognise that what was happening to her was about power and control. It is when power is juxtaposed with vulnerability that there is the potential for abuse. That happens—it happens every single day. Victims of domestic abuse are not just younger people; according to Age Concern, over 375,000 older people are at risk of domestic abuse.
The abuse of people is a cancer in our society, and that very subtle power imbalance is where the fine line is crossed. Given that the Court of Appeal has ruled and is already saying that medics have to look out for undue influence, I would argue that amendment 23 actually strengthens the Bill. My hon. Friend the Member for Spen Valley has repeatedly insisted that this Bill needs to be the tightest in the world. How does the amendment not complement her view? How does it not strengthen the Bill, to protect victims?
Sojan Joseph (Ashford) (Lab)
My hon. Friend mentioned domestic violence and vulnerable people. Do we not also need to think about the many people in hospital beds and nursing homes who may not have any relatives? They might get influenced or encouraged to choose this route by professionals because of the pressure on the NHS and hospices. Amendment 23 would strengthen the Bill in that respect as well.
Naz Shah
I would like to hope that that would never happen; I have a huge love of the NHS and of the people I know in it who make decisions every day, particularly given all the cuts—even more so, post covid. But there is that risk; I would like to hope that it is very small.
When it comes to mental health, the debate is similar to the one about capacity: it is the same conversation about whether something is fit for purpose. Just because something already exists does not mean that it will necessarily suit what we are doing here.
On International Women’s Day, the Minister for Safeguarding and Violence against Women and Girls, my hon. Friend the Member for Birmingham Yardley (Jess Phillips), eloquently reads out a list of victims of domestic violence who have been murdered. There are two a week—I make no apologies for keeping coming back to this. Only yesterday, there was an article about women’s charities that support victims of domestic abuse citing their concerns. The amendment speaks to those concerns. How could it not be supportive?
I am not convinced by the idea that the amendment would introduce an element of jeopardy. People make decisions with their families every day. We sit and have conversations. I speak from a position of privilege—as we all do in this place, frankly. We speak from positions of privilege about how we could have these conversations with our families. But we know that inequalities exist and that some people do not have those privileges. We know that society is unequal. We know that domestic abuse, elder abuse and mental health issues exist.
In my constituency, it takes 14 months just to get a child and adolescent mental health services referral for a young person; I appreciate that we are not talking about young people. My point is that there is a real backlog in the NHS—in terms of waiting times and pain medication, for example. Palliative care is not equal, as I said yesterday. I am genuinely asking Committee members: which bit of the amendment can we not support?
Sarah Olney
The hon. Lady is making a powerful speech. She referred to an article she read yesterday about domestic violence in relation to the Bill; it may have been the article by Sarah Ditum in the New Statesman, which I also read yesterday. It cited two cases in which people had been on trial for murder and had pleaded mercy killing, or said that they had carried out the killing of their spouse or partner on the basis that that person was suffering greatly at the end of their life. In both cases, when the evidence was examined, the men were found guilty of murder, because it was very clear that that was what had actually happened.
The article had a profound impact on me, because it demonstrated the risk that we are running: that people will be able to use the Bill in instances of domestic violence. We have to take that very seriously and consider the implications.
Kim Leadbeater
My hon. Friend is making some powerful and important points about, sadly, a lot of the ills in society, which we all deal with.
Let us take the example of a woman who has a terminal illness and is coerced and pressured by a loved one to end her own life. At the moment, we have no idea whether that has happened, because there is no legal framework around that dreadful situation. The Bill would create a legal framework, so that conversations would be had with that woman prior to that point and, hopefully, that point would never come. She would speak to two doctors, potentially a psychiatrist, and other experts to ensure that that did not happen. At the moment, there is no legal framework around that. The Bill also includes a criminal offence of coercion, for which someone could go to prison for 14 years. At the moment, that just is not there.
Naz Shah
I thank my hon. Friend, but I feel that the point is being missed. It is true that there is no framework, but for somebody to get to this point in the first instance they need to have a terminal illness. There is a framework around domestic violence, and domestic violence laws exist for everybody. Frameworks already exist for women fleeing domestic violence, and there is no shortage of attempts to try to get those legal frameworks right across society. That is why we had the Domestic Abuse Act 2021, why we have committed to halving violence against women and girls, and why the Prime Minister made a personal commitment in that regard—and rightly so.
There has already been a test case in which a judge said that medics have an obligation in this context. An hon. Member referred yesterday to assisted dying being a treatment, although I disagree, and we had that conversation later.
The Minister for Care (Stephen Kinnock)
That was a misunderstanding; I was talking about “treatment” as a legal term.
Daniel Francis
From what I understand from the promoter of the Bill, the argument is that we should put these measures in place to protect from coercion people who have less than six months to live, but we would not put those protections in place for people who have nine or 12 months to live. If we are putting the measures in place for someone with six months to live, why are we not doing so for someone with nine or 12 months to live?
Naz Shah
My hon. Friend makes a valid point. There has already been a test case, and the Court of Appeal has ruled that undue influence is relevant to medical decisions and that doctors must look at it. If that is already a ruling, I struggle to understand the resistance to adding the words “undue influence” to a Bill that, in the promoter’s own words, should be the safest in the world. A judge has already ruled on it. We already know that we are not going to get to a judge. I struggle to understand this.
Kit Malthouse
As the Minister pointed out, the concepts that the hon. Lady is trying to embed in the Bill are already covered by what is a settled legal interpretation and a framework that, over the last 10 years, has become used to dealing with those issues. Do not forget that families who are going through such situations will be advised and will examine the legislation quite carefully. I am nervous about injecting yet another level of consideration for them that might mean that conversations are interpreted—by them, but not necessarily in a legal sense—in a way that is not beneficial to the patient.
I understand the group that the hon. Lady is seeking to protect—that is what we are all trying to do. But what about the majority of people in such circumstances, who might say, for example, “Darling, I am thinking about taking an assisted death because of my horrible disease. If you were me, what would you do?” If I then say, “Well, painful though it is for me, I would do exactly the same thing,” how would families interpret that?
I also want to respond to the hon. Member for Bexleyheath and Crayford. He made a strong point, but I am not sure he is exactly right. I think that if at nine months I have a disease that is progressing, and somebody in my family says to me, “When it comes to it, Kit, you have absolutely got to take an assisted death. We really want you to,” and then when I get into the six-month period I do, and I tell the doctor, my interpretation is that would be covered under the Bill.
I think what the Minister was eloquently trying to establish was that we have to be careful about the clarity of the legal language, and not make it embroidered in a way that makes interpretation by laypeople as well as by lawyers more difficult and complicated. I will come on to this in the next grouping, but we must not use language in a way that skews behaviour, or that makes what should be healthy and fulsome discussions within families guarded and nervous.
Naz Shah
I have to respectfully disagree with the right hon. Member that this is a settled position. I also challenge, on the record, what the Minister said. I struggle to understand how the Minister and the Government can say that this is a settled position without having gone to consultation on the Bill and without having an impact assessment. That does not satisfy me. My role when I agreed to be on the Committee was to come in to scrutinise and help strengthen the legislation. In doing so, these are the things that I am pointing out, because the safeguards are not strong enough for me.
I come back to the Court of Appeal. This would be a medical intervention, albeit to end somebody’s life. It would be administering a lethal drug to end somebody’s life, and it would be done by medics. Medics are involved in every stage. If there is case law that has already established that doctors have to look at undue influence in medical decisions, then I say to every single person on the Committee: what are we resisting? When the Court of Appeal has already said so, why is the Committee debating keeping this language out because it makes things complicated?
Let us go back to the words of Dr Jamilla Hussain, who gave evidence to the Committee. She is a clinician, and she absolutely accepts that there are some people who would really benefit from this law. As a clinician, she wants to get there. Indeed, I spoke to Professor John Wright, and he said, “Naz, absolutely—this is where we need to be.”
Sean Woodcock
My hon. Friend is making a very powerful argument. She is absolutely right to focus on protecting the vulnerable people who this law might apply to. She has touched on medics. I also want to mention the state and its role in what we are talking about. For example, I am opposed to capital punishment, and I link this discussion to that because we are talking about the state providing an individual with a method by which they can end their own life, such as by handing them a pill. I am concerned that, if we are not taking these safeguards seriously, we are abandoning vulnerable people by allowing the state to aid and abet the misuse of the Bill against them. Does my hon. Friend share my concerns?
Naz Shah
I share my hon. Friend’s concerns about the Bill not being tightened and fit for purpose. We cannot afford for those people to slip through the net. One woman’s death is one too many. One older person’s death is one too many. That is the bar we have to set.
I come back to the words of Dr Jamilla: she said, “Yes, absolutely.” Every single Committee member, and anyone familiar with this debate, found it heartbreaking to listen to those who came in to give testimony about how members of their families died. Those stories will stay with us forever, and rightly so. That is why, in principle, I am supportive of where we need to get to with the Bill. However, as Dr Jamilla said, we cannot get there by ignoring this big lot of people with vulnerabilities and inequalities, who would absolutely need this legislation. We need to fix the inequalities first.
Let us be honest: as legislators, we know that we will not fix every ill in society, otherwise we would not need a police force. We would not need laws if everybody behaved as they should and supported each other. However, it is incumbent upon us, as legislators in this place, to try our best.
Nobody came to this Bill Committee thinking it was going to be a walk in the park. We certainly did not know that we were going to get evidence throughout it, and plenty of challenges are popping up. We came to this Committee—I came new to the subject—because it is of such importance. I sat in the Chamber for five hours on Second Reading, bobbing, but I did not get the chance to speak—and that happened to another 100 colleagues, who also did not get to speak. However, those who made contributions—whether they were for the Bill, concerned about the Bill or were clearly not going to support the Bill—did so because they feel very strongly about it. That is our responsibility.
I come back to amendment 23, which was tabled by the hon. Member for Reigate: we should really consider adding it to the Bill, because that would strengthen it. The amendment does not dilute the Bill, and it does not add another hurdle given that the Court of Appeal has already said that there is a responsibility to look for undue influence. I do not understand the resistance to the amendment, which I will support.
Jake Richards (Rother Valley) (Lab)
This debate has been very interesting and has reminded me of my life before being elected. When I was a barrister in court, I was often junior counsel and, by the time I stood up, all the best points had been taken. I feel a bit like that this morning.
I have some observations, the first of which is on what is in the Bill currently. My central submission is that the Bill does more than enough in this area, and that simplicity is what is required, especially when dealing with very complex and difficult subjects, which coercion is. There are two sides to the coin of coercion: one is about acts by third parties, such as family members or society at large, and the other is the individual making the decision.
Clause 1 is clear that, as part of the assessment made by the doctor, judge or panel, the person must have
“a clear, settled and informed wish to end their own life”
voluntarily. That precisely echoes words from the Crown Prosecution Service guidance on whether to prosecute that is currently in operation. That guidance has been in use for some time, and it seems perfectly rational and logical to continue that.
The focus of the assessment should be on the individual and whether they make the choice freely. Clause 1 makes that clear, and I presume purposefully echoes the language from the CPS guidance. It then says it must be established that the person has
“made the decision that they wish to end their own life voluntarily and has not been coerced or pressured by any other person into making it.”
That must of course be read with clause 26, which introduces a new offence:
“A person who, by dishonesty, coercion or pressure, induces another person to make a first or second declaration, or not to cancel such a declaration, commits an offence.”
That carries a sentence of up to 14 years in prison.
Jake Richards
I am very happy to share my CV afterwards. I practised as a barrister mainly in family law and Court of Protection law, but back in the day I also practised criminal law as a very junior barrister in the magistrates courts up and down the land.
I do not want to delve into the criminal element too much, because we are on clause 1, but it appears to me that the criminal offence set out in clause 26 is far stronger than the Suicide Act 1961, which talks of an act of encouragement. That is not included in clause 26, which talks about inducement—a much more holistic and wider concept than that of an Act probably drafted back in the late 1950s. In my submission, that brings the law far more up to date with modern concepts of coercion and pressure.
Rebecca Paul
The hon. Gentleman is making interesting points. This is probably more a question for the Minister. I have been focused on clause 24, in terms of encouragement, but clause 26 obviously makes coercion and pressure a criminal offence. The hon. Gentleman says he thinks coercion includes undue influence; does it include encouragement?
I seek clarification of whether undue influence and encouragement are captured in clause 26. When I tabled the amendments, I assumed not. If it is the case, how does that interact with the Suicide Act, which already makes the encouragement of suicide a criminal offence, and is probably not—I have not checked, so I would have to look—consistent with this? That needs to be looked at. It is easy to say that undue influence is included in coercion, but it has a knock-on impact on a lot of other things. We need to be really clear on that point.
Jake Richards
My answer to the hon. Lady’s first question is yes. In my view, clause 26 covers undue influence and encouragement—I could go on to state why.
My reading of the Bill is that clause 24(3) essentially removes from the Suicide Act persons who are by all the other criteria eligible for assistance in death under the Bill. The Act that will be created is, in my view, stronger in any event. That is why—I genuinely mean this respectfully, because the hon. Lady made good points in an impassioned speech—this argument about encouragement in the Suicide Act does not follow through. What we have here is a much safer and more modern piece of legislation, which is reflective of what we all think of when we think of coercion and pressure.
Rebecca Paul
Forgive me—I hope the hon. Gentleman will bear with me as I seek to understand this; he is obviously very learned in these matters. My understanding is that clause 24 takes out only the assistance piece, not the encouragement piece. I think the hon. Gentleman just said, if I am right, that encouragement now falls under clause 26, but encouragement is also captured in the Suicide Act 1961. That is my non-lawyer interpretation of reading the Bill. I am not saying that is absolutely right, but I would appreciate it if he could clarify that.
Jake Richards
My reading of the Bill—we are dealing with clause 1, but we will get to clause 24—is that clause 24(3) says:
“In the Suicide Act 1961, after section 2A (acts capable of encouraging or assisting suicide) insert”,
followed by the provisions in new section 2AA.
Juliet Campbell (Broxtowe) (Lab)
I have a question for the promoter of the Bill, my hon. Friend the Member for Spen Valley. We are having a lengthy conversation about coercion and pressure, and whether those two words are a catch-all for things that can be much more subtle and nuanced. That is the point of the amendment, and it is the point that I will make when I speak to the amendment I have tabled. Clause 26 suddenly introduces new language, with the word “dishonesty”, which brings in another type of coercion and pressure. Could we rethink the wording of clause 1(2)(b), which refers to a person who
“has made the decision that they wish to end their own life voluntarily and has not been coerced or pressured”?
The words “coerced” and “pressured” are insufficient to cover the safeguards that we are asking for. They are not a catch-all. We are asking for something much more nuanced, and for other words to be added, just as the word “dishonesty” appears in clause 26.
Jake Richards
I did not draft the legislation, but my understanding is that the reason why the word “dishonesty” appears in clause 26—I do not know whether the Minister wants to comment on this—is that when there is a criminal offence, there needs to be a mens rea. The person who has committed the offence needs to have been intentional or reckless in doing so. As I say, I was a criminal barrister only very briefly; I am sure my law tutors are shaking their heads.
Naz Shah
The principle of statutory interpretation means that by mentioning one thing, we exclude others, so it is my understanding that having the terms coercion and pressure in the Bill excludes undue influence. Will my hon. Friend, who has clearly gone through this in detail, also comment on the fact that section 2A of the Suicide Act says that encouragement includes pressure?
Jake Richards
With respect, I think my hon. Friend is wrong: it is certainly not an exhaustive list of factors to be taken into account. The courts—this is why we have a common law system—interpret the language used in legislation.
Naz Shah
To build on that, I referred to the Court of the Appeal earlier, but when it comes to someone giving their organs, I think from the age of 12 or 13—I will try to find the reference—the words “undue influence” are used in the legislation. It comes back to the crux of my argument; I would like to understand why my hon. Friend is so concerned, from a legal perspective, about putting in the words “undue influence”, when they already appear in legislation.
Jake Richards
The issue I have is that if we open the door to all different types of terminology, it will never end. The law is best served when it is clear, simple and straightforward.
Jake Richards
Let me just make this key point. Members have raised the case of Re T. I must admit that I do not know that case, but I believe it is a 1992 Court of Appeal case about a refusal of treatment, so it is 33 years old. The law has moved on. As the Minister said earlier, the terminology of coercion and pressure is much more modern, and is used in legislation that has been drafted in the last decade, rather than the Suicide Act drafted in the 1950s and that Court of Appeal case from the early 1990s.
Last night, I briefly went back to my law books—I sound like I am really missing my old job—and looked into where the concept of coercion is used across different jurisdictions and areas. This is what I read: “Coercion is a phenomenon the courts have experience of handling. Generally, coercion as a concept in our law involves applying pressure, whether physical, psychological or moral, to force someone to act against their free will or better judgment. This pressure can manifest in various forms, such as threats of intimidation and undue influence, and is recognised across criminal, family, consumer and contract law.” It is used in forced marriage legislation. It is used in criminal legislation. Case law has made it very clear that coercion is used interchangeably with duress, defined as a constraint on a person’s choice.
I feel that we are dancing on the head of a pin. The law has been drafted by one of the most senior parliamentary draftspeople. The Government Minister has confirmed that the Ministry of Justice deems this to be a sensible course of action if this legislation is to proceed.
Dr Tidball
Does my hon. Friend agree, as Max Hill did in oral evidence, that it would be helpful to have definitions of the three concepts in clause 26? Although we are discussing an earlier clause, it is important to thread the needle with this statute and ensure that we are looking ahead, as the hon. Gentleman has rightly pointed out.
Jake Richards
That sounds very sensible—I think my hon. Friend is talking about her amendment.
Rebecca Paul
I am so glad that the hon. Member has spoken, because this is a really important conversation. I appreciate that we are getting a little ahead of ourselves, so I will be quick before the Chair tells me off. Section 2A of the Suicide Act includes pressure when it talks about encouragement. That is why it is so useful to have this conversation—because that could mean that encouragement is captured by clause 26. There is some work to be done. I stand by the amendments—it is really important that we have them on the face of the Bill—but, when we get to the relevant point in Committee, we need to think about the interactions of clauses 24 and 26 with the Suicide Act. I am sure that the Ministers will want to look at that, but we may need to be very clear what is included in what, which may require some things in the Bill so that there is no ambiguity. Does the hon. Gentleman agree?
Jake Richards
Yes. As I say, the amendments are perfectly reasonable; it is sensible to raise them and it is good that we are having this conversation. I have looked into this carefully and I take it seriously. I feel that the square is squared—or the circle goes all the way round, to mix my metaphors—but that does not mean that we should not look into this further when we get to the relevant clauses.
Danny Kruger
I am worried about the constant suggestion that we look at these issues later. The fact is that we do not know what the Bill will look like later. We do not know what amendments will be tabled or what will be agreed. It is always possible to revisit amendments that have been passed in the earlier stages if subsequent amendments make them otiose. The point is that we should not pass this opportunity to strengthen the Bill if we can.
On the point that the hon. Member for Rother Valley was discussing with my hon. Friend the Member for Reigate about the Suicide Act explicitly referring to pressure as a subset, as it were, of encouragement, that Act specifies that encouragement is the general, catch-all term and includes pressure. I think the hon. Gentleman is suggesting, and other hon. Members have suggested, that it is the other way round: that coercion or pressure somehow include encouragement. Surely encouragement is the broader term—it exists in the current law on suicide. What is the problem with using that term in addition to coercion and pressure, consistent with existing law? It is a broader and more sufficient term.
Jake Richards
On the first point, in fairness, the hon. Member for Reigate was talking about a clause that we are going to consider and the link between two different criminal offences in the 1961 Act and clause 26 of the Bill.
On the second point, the Bill—to coin a political phrase—needs to be fit for the future. The language used in legislation over the last decade when we are considering coercion—I use that word automatically because that is the language we use now—is much more appropriate than “encouragement”, which is slightly archaic, to be honest. Perhaps we need to look at the Suicide Act as well—although not in this parliamentary term; that is for the second term. [Laughter.] I have nothing further to add.
Juliet Campbell
I rise to speak to amendments 113 to 115 and 118 to 121, which would require steps to be taken to establish that a person seeking assistance has not been manipulated by another person.
The amendments would require the co-ordinating doctor to ascertain whether, in their opinion, the person has been manipulated, and would account for additional ways that a person can be influenced by another person into choosing an assisted death. Pressure and coercion may leave an individual feeling that they have no choice but to take that path; however, manipulation can make the person think that they made the choice themselves. Coercion is an overt and clear means of controlling someone, whereas manipulation is a hidden, psychological and deceptive means of control.
Dr Opher
We are all in this together. We all want the safest Bill possible, so we should defer to the legal side to form the safest language. I am not a specialist on this legal subject but we all want the same thing and we are arguing about words on which we perhaps just need to take advice, to make the safest possible Bill.
Naz Shah
In response to the intervention of my hon. Friend, we are here to make the Bill as safe as possible, but this is a new thing. When the Bill returns to the House, I have to make a decision on whether to support a new Bill that is of such huge magnitude to our communities and the whole country. This Committee is the only process available to us, and words matter.
I support the amendment tabled by my hon. Friend the Member for Broxtowe. The concept of manipulation, as she set out, is very important. I come back to the issue of abuse, particularly in respect of women. I have never heard the phrase “Fifty Shades of Manipulation”—that is an interesting one—but this happens every day, across society. I encourage people to talk about these words. We, as parliamentarians, benefit from that: we are better people for understanding other experiences, because different people bring different experiences to this conversation. I have certainly learned a lot, and it strengthens the House itself when we speak from positions that we have debated. That is the whole purpose of us being here. I am not concerned by talking about adding language—I hope my hon. Friend the Member for Broxtowe shares my view—because that is point of us being here in the first place.
Juliet Campbell
To reply to my hon. Friend the Member for Stroud, I understand that the writers, promoter and sponsors of the Bill want it to be as simple as possible. The thought is that if we make it as simple as possible, there is less room for confusion and misinterpretation, but there are times when we can make things so simple that we allow far too much interpretation. Words such as those that the hon. Member for Reigate wants to be put into the Bill are really important. Manipulation is really important. Coercion and pressure are not measures of every type of controlling behaviour that happens to individuals.
Kim Leadbeater
I am very supportive of the sentiment behind my hon. Friend’s amendments, and she is making some really good points. Again, the question is about the simplicity of the language that goes in the Bill. The CPS guidelines on coercion and coercive control includes behaviour that is
“highly manipulative such as: ‘love bombing’ where the suspect will intermittently do what appears to be loving acts, seeking to present these as interrupting or negating the course of conduct”,
so there is language in there about manipulation. I hope that provides some reassurance that manipulation is seen to be part of the broader concepts of coercion and coercive control in the eyes of the law.
Juliet Campbell
I thank my hon. Friend for looking that up so swiftly. I still think that those additional words need to be included in the Bill. “Coercion” and “pressure” are used as a catch-all for manipulation, but the Bill does not allow people who are using it in their everyday life—doctors, clinicians, nurses and social workers—to understand that.
Naz Shah
I thank my hon. Friend for being so generous with her time. To come back to the CPS’s terminology, does she agree that, in an ideal situation, the Bill would be so safe that we would not need to look at that CPS definition? The Bill would be so tightly defined that nobody could be prosecuted for coercing somebody into taking the option of assisted death.
Juliet Campbell
I absolutely agree that we do not want people not to understand what the Bill allows them to do or not do. We spoke earlier about making the Bill simple enough for professionals to understand so that they know how to deal with particular instances, but it is not here to make life easy for professionals; it is here to ensure that anyone who is vulnerable—anyone who has six months to live, or for whatever other reason—is protected.
A continuous theme of our debates and all our conversations is that we must make safeguarding as tight as possible so that people are protected. I believe it is not too much to ask to include those additional words to ensure that the wording is as tight as possible and protects the people who need our protection every single day.
Danny Kruger
It is a pleasure to follow the hon. Lady. May I say how much I agree with what she has been saying and the purpose of her amendments, which I will be supporting if we get the chance, as I will the amendments in the name of my hon. Friend the Member for Reigate?
I do not want to repeat what I said yesterday, but my general point is that we make decisions in a context. We are directly influenced by the people around us. I want to highlight the very powerful phrase that my hon. Friend used. She said that love can shroud decision making, and the influence and pressure that is applied to us can be shrouded in love.
Professor House, who gave evidence to us, talked about the enmeshment of people’s decision making with the influence of their loved ones and people around them. The fact is—hon. Members have made this point—that power dynamics in families are complicated, and where there is an imbalance of power, there is risk. The Bill implicitly acknowledges that through the safeguards that it attempts to create, but I do not think they are strong enough.
I know that my right hon. Friend the Member for North West Hampshire is concerned that strengthening the Bill in this way will create an opposite risk, which is that a family member who was behaving perfectly properly could somehow be dragged into a prosecution, or that the application would be denied on the basis of a reasonable conversation that had taken place between loved ones—“My darling, do you think I should do this?” It is a lovely fictional conversation, a sweet exchange between a loving couple, but saying to somebody that you agree with the decision they have made and that you would support it, or that you are content with it or understand it, is not the same as undue influence—it is not even the same as encouragement. It is similar to the debate we will be having in due course about the role of the doctor making an overt suggestion of an assisted death, rather than consenting to a suggestion that has been made by the patient.
Kit Malthouse
My hon. Friend is asserting that those two things are different, but obviously, those assertions would be tested in court. If a person were to appear in front of the co-ordinating doctor and say, “Doctor, I want an assisted death and my husband thinks I should do it,” is that interpreted as encouragement? Is it support? Under the current legal framework, that would be interpretable and inquirable. However, as I said to my hon. Friend, I am not necessarily nervous that families would be dragged into some kind of legal conflict. I am concerned that they would seek to not get there at all, because the insertion of those words would make them so nervous about the conversation that they would become guarded.
We know from other jurisdictions that over time, people will come to understand this process. As I will refer to during our debate on the next grouping, they will also start to understand what they should not say, if we put into the Bill that there are things that will play negatively if they are revealed to the relevant authorities. My concern is that unless we keep the Bill simple and clear, and leave families and medics the space to have free, frank and open conversations that—from the medical point of view—cover the full range of options, we will start to restrict and police the conversation, and therefore make it that much more difficult.
Danny Kruger
The risk of gaming—of patients playing the game, and doctors seeking out words to say or not say—is an issue throughout the Bill. That is a general problem with the Bill; thankfully, it is not just a free-for-all. However, in the scenario that my right hon. Friend suggests, that is exactly my concern: if the patient says that their spouse agrees with them or encourages them, that should be a red flag. Under the current Bill, it is not clear that it would be. There is no obligation on the doctor to record that there has been undue influence or to push back, because at the moment, the doctor is looking only for evidence of coercion. As I will come to later, that bar is too low to use, so if the doctor hears those words, I would like him or her to start asking questions, to push back, and to satisfy himself or herself that there has been no overt encouragement or undue influence. That is the point of what we are trying to do.
Naz Shah
To come back to an earlier point—I want to make these points, simply because it is really important that we get them on the record—my hon. Friend the Member for Rother Valley talked about undue influence and encouragement perhaps being archaic terminology. However, just last year, the Digital Markets, Competition and Consumers Act 2024 cited undue influence, as did the Anatomy Act 1984. Acts passed by Parliament in the last few years have used that terminology, so does the hon. Member for East Wiltshire share my concern about the resistance to having those words added to this Bill?
Danny Kruger
The hon. Member is absolutely right—undue influence does exist in law, including in laws that have been passed very recently. I recognise that the hon. Member for Rother Valley is not impressed by laws that are more than 10 years old, but I hope he might be satisfied that a law passed last year is sufficiently up to date and modern for him to regard as morally valid. Undue influence is an existing term, and we should apply it in this case.
Kim Leadbeater
On that point, and in response to the comment made by my hon. Friend the Member for Bradford West, although I stand to be corrected by my hon. Friend the Member for Rother Valley, I do not think that he said that undue influence was an archaic term. I think it was the word “encouraged”.
Danny Kruger
If we are going to rule out the word “encouraged” on the basis of archaism, I do not know what we are going to do with the language. It is a perfectly acceptable term. We are still governed by the Suicide Act, to which the Bill refers and in which context it is framed, so it is appropriate to remember that the Act specifically prohibits encouragement and includes pressure within that concept. The two terms co-exist in the same section of the Suicide Act, so the idea that we cannot have more than one word, and that that is somehow confusing, is wrong.
Rebecca Paul
In the light of my hon. Friend’s points, I have an interesting fact that he might enjoy: “encourage” was added to the Suicide Act by the last Labour Government in 2009, and replaced “aids” and “abets”, so it is not that archaic.
Danny Kruger
My goodness, 2009 might be in the mists of history for the hon. Member for Rother Valley, but it was the last Labour Government. That is very good to know, and I am grateful to my hon. Friend.
The hon. Member for Spen Valley made the point, which is quite often made in defence of the Bill, that there is currently no framework to spot coercion, therefore the Bill creates greater protections for people. The fact is that, as the hon. Member for Bradford West said, there is no law that currently allows assisted dying, so no framework is necessary to prohibit encouragement or inducement to an assisted death—the opportunity does not exist. I think everyone must acknowledge that, if we pass the Bill, we may open up a new avenue for abuse, and it is necessary that the Bill close it off. That is right and appropriate.
Coercion and abuse no doubt go on and are tragically common, but the answer to that problem is not to legalise assisted suicide and put a regulatory framework around it with limited protections against coercion and influence. We have to deal with the terrible cancer of abuse and coercion that exists in our society, as the hon. Member for Bradford West said. If we are concerned about undue pressure in families, that should be our social mission. If we are to have an assisted dying law, let us make it as strong as possible. As I say, we are potentially opening up a new avenue for abuse within families.
Kim Leadbeater
For me, the law needs to change for a number of reasons, and we will talk about some of them as Committee proceedings continue: autonomy, dignity, personal choice and bodily autonomy. In terms of this issue, we heard from families who faced police investigations as a result of a loved one taking their own life. Not only were they dealing with the trauma, grief and loss of their bereavement, but they faced often months and months of police investigation. In the oral evidence sessions, we heard from Pat Malone, who was in that situation after his brother took his own life. Surely the hon. Member has to acknowledge that that is a problem. It is not the only problem, and it is not the only reason for the Bill, but he has to acknowledge that we as legislators have a duty to correct it.
Danny Kruger
I am sure that the hon. Lady will acknowledge that those investigations will still happen, because not everybody who commits suicide will be subject to the Bill; not everybody who is terminally ill and wants to take their life with the assistance of their loved ones will be caught under it. I am sure she acknowledges that it is therefore still appropriate to have safeguards against assisted suicide outside the law—in fact, the Bill strengthens those safeguards. Those will still continue. I also regard it as appropriate and necessary to have a law against assisted suicide, for all the reasons that we have been discussing.
The hon. Lady is right that it is appropriate for Parliament or the authorities in general to ensure that cases such as those we have discussed, and that have been powerfully testified to us, are handled sensitively. In an overwhelming number of cases, the police do handle them well and sensitively. It might be that we need to improve the guidance around prosecution, and that is an important question. I certainly do not want the families of people who have taken their own lives to be harassed and chased through the courts, and I think we would all agree on that. In that respect, the guidance for the CPS and the police will always evolve.
Naz Shah
The hon. Member may recall that we heard from the former head of the CPS in the oral evidence sessions, and I asked him whether the Bill would address concerns about such prosecutions. I absolutely agree with my hon. Friend the Member for Spen Valley that we want to address that. However, this Bill is not the route to address those issues unless they fall into that six-month bracket.
Danny Kruger
I think that is right. I do not accept the claim that this Bill is somehow a response to the problem of abuse, coercion or the pressure to end life in families. Tragically, in jurisdictions that have an assisted dying law, the number of unassisted suicides—suicides that happen outside of the law—go up, because no law can catch all the people who might want to take their own lives. Thankfully, there is no blanket support for any assisted suicide; all the jurisdictions have some restrictions.
More significantly, if the state said that some people’s lives are not worth living and that it is an acceptable choice for them to end their own life—which is not what the current law says; we have legalised suicide, not actually endorsed it—by passing a law that endorsed the choice of some people to take their own life, we would be sending a signal that we agree that some people’s lives are not worth living. The social consequence of that is clear in the evidence from other jurisdictions: suicide in the general population goes up as a result of an assisted dying law.
Kim Leadbeater
On that point, the evidence does not clearly show that there is a direct relationship between those two things; there are other factors and no way of knowing that. On the concept of ending one’s own life and giving people the choice under the provisions of the Bill, what would the hon. Gentleman say to people who frame that concept very differently—as a way to shorten their death? Those terminally ill people, in my experience—I have met many of them now—do not view this as a way of ending their life, because they want to live, but the reality is that they are dying and want to take control of what their death looks like. How would he respond to that?
Danny Kruger
First, there might not be a causal link between assisted suicide laws and the increase in unassisted suicides in those places, but there is such a clear correlation that it is difficult to understand what else might be going on—unless there is something in the water in Canada, Australia, New Zealand and the Netherlands that is not there in other countries. It might be that those countries have such a disrespect for the frail, elderly and ill that they are taking their lives. However, I think there would be a direct social impact from the signal that this law would send into our culture, which is very concerning.
I hear the hon. Lady use that phrase quite often about people wanting to shorten their death rather than their life, but I am afraid to say that it is absolutely meaningless. We are here to make law. Death happens: you are either alive or you are dead. People might want to shorten their death, and might use that phrase, but what they are doing is shortening their life. There is no conceptual difference and certainly no legal difference between those two things. Trying to say that some people’s motivation for suicide is legitimate and some people’s is not makes no sense. This law will allow them to shorten their life and have assistance in committing suicide, and there is no other way to describe it in any terms that make sense. I do not regard the distinction that the hon. Lady makes as valid.
Our obligation to ensure that the Bill sets out what it is claimed that we all want it to do, which is to ensure that people are not pressured unduly into taking an assisted death, means that we should put that in black and white. The hon. Member for Rother Valley said that the current term is more than enough, and we had a bit of an exchange about that. I emphasise that it is a clear principle of the statutory interpretation of law that courts will look at not just the words that are in the Bill, but the words that are not. The decision to include some words and not others is regarded as significant by courts. If the term coercion is there but not influence, it is appropriate for the courts to conclude that influence was not intended by Parliament. It might be the case that the term coercion is interpreted to include influence, but if so, let us make that clear.
Sean Woodcock
I am grateful to the hon. Gentleman for giving way while he is in full flow. One of the areas that I have been confused about in this debate is that the Minister said—I have no reason to dispute it—that coercion is a clear term, so the courts know where they are with it, because they are already dealing with it. However, we have also heard from proponents of the Bill that it is about making life easier for the professionals who are involved. I mention that because, overhanging all of this is the fact that the Bill as it stands—as it passed Second Reading—has a High Court judge intervention. We are told that an amendment is coming that will remove that for a potential panel of professionals—
Terminally Ill Adults (End of Life) Bill (Twelfth sitting)
Tuesday 25th February 2025
(9 months, 3 weeks ago)
Public Bill CommitteesTerminally Ill Adults (End of Life) Bill 2024-26 Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 25 February 2025 - (25 Feb 2025)
The Committee divided: - Ayes: 8 / Noes: 15 - Question accordingly negatived.
The Chair
Electronic devices should be turned off or switched to silent. The only cups that I should see are those filled with the water provided in the room—no tea or coffee. Let us continue our line-by-line consideration of the Bill.
Clause 1
Assisted dying
Naz Shah (Bradford West) (Lab)
I beg to move amendment 281, in clause 1, page 1, line 20, at end insert—
“(c) has met with a palliative care specialist for the purposes of being informed about the medical and care support options.”
This amendment would mean that illness, disease or medical condition etc, the progress of which can be managed or controlled by treatment are not characterised as terminal illness.
The Chair
With this it will be convenient to discuss the following:
Amendment 299, in clause 7, page 4, line 17, after “(g)” insert
“and the condition in subsection (4) has been met”.
This amendment is consequential on Amendment 298.
Amendment 298, in clause 7, page 4, line 26, at end insert—
“(4) The coordinating doctor may not take the steps set out in subsection (3) unless they receive confirmation from a palliative care specialist that the person has had a consultation with that specialist about the palliative care options available to them.”
This will require the coordinating doctor to be of the opinion that the person has had a consultation with a specialist in palliative medicine.
Amendment 304, in clause 9, page 5, line 41, leave out “any available” and insert
“the person’s experience of specialist”.
This amendment would require the assessing doctor to discuss the person’s experience of specialist palliative, hospice or other care.
Amendment 311, in clause 12, page 8, line 14, at end insert
“and
(i) the person has had a consultation with a consultant who is a specialist in palliative medicine.”
This amendment would require that a person has had a consultation with a specialist in palliative medicine before the High Court could issue a declaration.
Naz Shah
Amendment 281 would ensure that the patient receives advice on palliative care options from a specialist in the field. Medicine is fast-paced, with innovative and new medicines becoming available in quick succession. Although those in the profession try to keep abreast of developments, it is hard to maintain the depth of knowledge necessary in all specialties. A co-ordinating doctor may or may not have specialist knowledge in palliative medicine. Some courses may provide the opportunity to learn more, but others only touch on palliative medicine—covering it in less than a day of a five-year medical degree. Specialists who are leading in this field of medicine, innovating advances and working to palliate a patient’s symptoms at the end of life will have far greater knowledge of the specialism. Even in this wider debate, many who work in a different field of medicine or in general practice have simply got their facts wrong when speaking about palliative medicine—not through intent but because they have drawn on their own, perhaps out-of-date, experience or simply do not have the competencies to understand all that palliative care can provide.
Pain and symptom control techniques are advancing; in our debates on this Bill, people have articulated instances of poor care rather than what clinical experts are able to achieve. It is therefore essential that a patient has a consultation with an expert in the field of palliative medicine, who can alleviate a patient’s fear, support them with a plan for the end of their life, and discuss how pain and symptoms can be managed. Hearing an alternative approach to the end of life can be life-affirming, help people discuss their fears and concerns about dying, and provide a patient with what they are seeking physically, psychologically, emotionally, socially and perhaps spiritually. Specialists in palliative medicine are trained to home in on the challenges that people naturally have on receiving a diagnosis of terminal illness and are skilled at supporting a patient to explore what end of life could look like for them.
If the Committee does not pass this amendment, it would be placing itself above palliative care specialists when talking about such matters. It would undermine the need for such a specialty in medicine, like a GP who may not know the breadth of palliative medicine options for their patients. The Committee must not assume that it knows those options. Rather, it should enable those with a specialist understanding of palliative medicine to deploy their skills in this process by working through palliative care options with patients before the consideration of a path that will end with an assisted suicide.
Amendment 299 is consequential on amendment 298, which would ensure that a person has a consultation or consultations with a palliative care specialist. Amendment 298 would further embed this into the practice of managing the end-of-life process to provide the patient real choice over their options at the end of life, as what can be achieved through the practice of high-quality palliative care is often significantly different from people’s perceptions—even those of clinicians. Palliative care, like so many fields of medicine, continues to advance in its application and in the steps that can be made available to palliate a person’s pain and symptoms. When pain is difficult to control using oral or intravenous pharmacology, other interventions, such as a nerve block, can result in the absence of pain. A specialist is required to provide such a procedure, but for most people who are in receipt of palliative care, this option is rarely made available. Palliative care is about not just pain and symptom control, but the holistic journey of a patient at the end of life.
Danny Kruger (East Wiltshire) (Con)
The hon. Member mentions the principle that palliative care is a holistic service. Does she agree that, given that the Bill’s advocates—including the promoter, the hon. Lady for Spen Valley—emphasise the need for a holistic range of opportunities for end-of-life care, palliative care needs to be central to that? Rather than suggesting that there is an either/or between palliative care and assisted dying, the advocates of the Bill have often stressed the importance of having both options. Does the hon. Member for Bradford West agree that it is strange that the Bill does not require palliative care consultation as part of the range of services that are offered to patients when they are having their consultation?
Naz Shah
I completely agree, which is why the amendment tabled by my hon. Friend the Member for York Central (Rachael Maskell) is very important. I urge the Committee to accept it, as it would ensure the provision of a palliative care consultation. As my hon. Friend the Member for Spen Valley has always said, it is about having a holistic approach—we need to get back to that.
In the evidence sessions, we heard that palliative care social workers can play a pivotal role in supporting patients. Those from other professions—psychological services, chaplaincy services, physiotherapists, occupational therapists and speech therapists—along with specialist nurses and medics can all contribute to the care of a patient at the end of life. In discussions with palliative care specialists who listened to the debate on 29 November, they were perplexed by the symptoms that were graphically described in the case studies, and cited poor care as the reason for them. Many such symptoms can be controlled, and they were shocked that such examples of poor care were presented as a reason for assisted death, rather than for making good quality palliative care available to all patients.
We further heard evidence, especially from Dr Jamilla Hussain, that access to palliative care is inequitable. We know that those from minoritised communities and from low socioeconomic backgrounds have poorer access to good palliative care, and that people can have poor access depending on where they live, and on the day of the week or the hour of the day. Through this amendment, we want to ensure that everyone who is seeking an assisted death, or who has it suggested to them, as this Bill allows, is able to access a consultation or consultations with a palliative care specialist, who can dispel the myths while supporting them with their end-of-life plan.
Kim Leadbeater (Spen Valley) (Lab)
My hon. Friend talked about the stories that we heard on Second Reading. Does she acknowledge, as Dr Sarah Cox from the Association for Palliative Medicine said, that there are cases where palliative care cannot meet a patient’s needs? We have a lady in the Public Gallery this morning whose mother had a horrible death, having had ovarian cancer and mouth cancer; she had to have her tongue removed, so she could not eat and drink, and she essentially starved to death. We have to be careful not to dismiss those cases, because they are real stories of real human beings, and we have to acknowledge the limitations of palliative care.
Naz Shah
I absolutely agree. Nobody in this Committee, from what I have heard over the weeks of evidence that we have taken, is suggesting in any way that we are dismissive of people who actually need an assisted death and would benefit from the Bill. As I have said previously, and as Dr Jamilla said very clearly, there are some patients who clinically would benefit from an intervention such as an assisted death. I came on to this Bill Committee to ensure we have the best legislation and safeguards in place. The Bill currently does not ensure that people are aware of the options. This amendment would ensure that people have considered all options and can make an informed choice. If there is no requirement to speak to a specialist, I am afraid the Bill would do a disservice to those who might want to use it to seek an assisted death by not presenting them with those options.
In evidence from the representative of the Royal College of Psychiatrists, we heard an example of somebody who was in lots of pain and decided to seek an assisted death, but changed their mind once they understood that their pain could be alleviated. That is what this amendment is about. I urge the Committee to vote for it, because it is fundamental that we enable people to make an informed choice and to understand the services and options available to them.
Sojan Joseph (Ashford) (Lab)
Does my hon. Friend think that giving everyone access to palliative care would resolve some of the concerns about coercion and consent?
Naz Shah
My hon. Friend comes from a mental health background, and I appreciate his expertise. We have talked a great deal about coercion—we have debated it for hours and hours—and I agree palliative care specialists, who deal with such issues as their day job, can provide that intervention and support the patient by establishing a much stronger relationship with them. I added my name to this amendment because I feel very strongly that palliative care must be a central part of the Bill if it is to provide patients a real choice at end of life. There should not be an assumption, as there is in the Bill as drafted, that assisted death is the predominant option once a person embarks on this pathway.
Let me return to the matter of minoritised voices. Dr Jamilla submitted written evidence, and spoke passionately, about the options available to people from black and minority ethnic communities. She said that they feel very much ignored. As I have said previously, palliative care is not fit for purpose because there is postcode lottery: provision depends on where a person lives, whether they have a hospice nearby, what the hospital options are and so on. There is a fear among ethnic minority communities of being pushed towards assisted death.
Sarah Olney (Richmond Park) (LD)
Does the hon. Lady agree that the purpose of this amendment is to ensure the Bill delivers for the people for whom it is intended, such as the person the hon. Member for Spen Valley spoke about? It would put in place protections for the people for whom there is a choice, and that where those choices exits, they are laid out in full and properly examined before a final decision is made.
Naz Shah
I completely agree. It is imperative that those options—pain options and care options, including with the family—are explored in detail. The last time that I spent time in a hospice was when my brother-in-law was dying of cancer, and I remember that, as a family, we were very much involved in those conversations. Having such expertise empowers not just the patient but the family. Losing somebody who has a life-threatening condition is a difficult time for families and loved ones. When the wraparound model of palliative care, with specialist nurses and doctors, is good, it can be amazing. I have heard plenty of stories about when it is good. Last week, I mentioned a friend of mine who lost her husband last year, and she said that the palliative care nurses and doctors could not do enough. That gives the family confidence to explore the options. In that instance, that person would have benefited from this Bill—she encouraged me to support it.
As Dr Jamilla said, some people would absolutely benefit from the Bill, and they cannot be dismissed, but how do we legislate to cover people who do not have equal access to palliative care or to healthcare? There is discrimination. The covid experience that we went through recently showed the impact of inequalities. Disabled people, people with mental health conditions, elderly people, and people from black and minority ethnic communities, say that they were DNR-ed—subject to “do not resuscitate” orders. There is already a lack of trust in services, so we need to strengthen palliative care.
There is a fear among these communities that they will be pushed towards assisted dying. A consultation with participants from Pakistani, Roma, Nigerian, black Caribbean and Indian backgrounds revealed overwhelming mistrust, which is deeply rooted in the experience of discrimination and the disproportionate impact of covid-19. As one participant put it,
“They are doing this to save money…to kill us off.”
To get confidence among communities back, we need specialists people can rely on. That is what the amendment speaks to, and I hope that the Committee will support it.
Danny Kruger
I rise to briefly speak in support of amendment 281, moved by the hon. Lady and tabled by the hon. Member for York Central (Rachael Maskell).
At the moment that somebody seeks assisted death through a consultation with a doctor, they stand at a fork in the road: they can either proceed towards the assisted death about which they are inquiring, or turn towards other treatment options. On Second Reading, almost every Member on both sides of this debate stated that we need more palliative care, and everybody emphasised the value of providing good palliative care to all who need it. The amendments in this group would simply give force and power to the clear call of the House of Commons for a strong, realistic palliative care option as an alternative to assisted death, and I would be astonished if members of this Committee chose to vote them down. They give clear expression to the will of the House: that palliative care should be offered, and that it should be apparent that a patient has clearly understood their palliative care options.
I implore members of the Committee to consider what they would be communicating if they rejected the amendments. They would be saying that this is not a fork in the road, but a one-way street: there is only one way that someone is likely to go, and that is onwards to an assisted death. If that is the will of the Committee, it should vote the amendment down. If it thinks, as so many people said on Second Reading, that there should be real choice, and that palliative care should be explained and properly available, then I implore the Committee to support the amendment.
Dr Simon Opher (Stroud) (Lab)
I thank my hon. Friend the Member for Bradford West and the hon. Member for East Wiltshire for their speeches. I also thank my hon. Friend the Member for York Central (Rachael Maskell), who is a fantastic campaigner for excellent palliative care, for tabling the amendment.
I cannot disagree with almost everything that has been said: people need to be given real choice, and they certainly need to be given the choice of palliative care. As the hon. Member for East Wiltshire said, people need to be offered palliative care. That is absolutely crucial to the Bill. However, the amendment would make it a requirement that a patient has met someone in palliative care. What would happen to a patient’s autonomy if they did not wish to see a palliative care doctor? Would they be excluded from the process? It is incredibly important that people have real choices with respect to palliative care in this process.
I note to the Committee the fact that clause 4(4) states:
“If a registered medical practitioner conducts…a preliminary discussion”
with a person, they have to also discuss with that person
“any available palliative, hospice or other care, including symptom management and psychological support.”
That is in the Bill. It needs to be offered.
I have had patients who have not wished to see a palliative care consultant. It is their autonomy to make that choice. I do not think that it is a wise choice—I think almost every doctor would try to push them towards palliative care—but we must not exclude those patients from accessing an assisted death if that is what they want. That does not mean that people should face a fork in the road, as the hon. Member for East Wiltshire just mentioned. This is not an either/or: sometimes people can receive excellent palliative care and still request an assisted death, as my hon. Friend the Member for Spen Valley said.
I absolutely agree with many of the things you have been saying. I totally agree that we need better palliative care—although, actually, we have pretty good palliative care. In 2017, palliative care in this country was the best in the world, and we need to rebuild back to that again. But having a requirement that someone has to have seen a palliative care consultant will weaken the Bill. I urge the Committee to reject the amendment.
Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)
It is a pleasure to serve under your chairmanship, Mr Efford. I start by gently pushing back on what my hon. Friend the Member for East Wiltshire said about this being a fork in the road. I do not see the Bill giving patients that ultimate option. They have the choice to opt for an assisted death while continuing with their palliative care all the way along; in fact, they could then decide that they did not wish to have an assisted death, although that opportunity would be open to them. I do not think that the choice is the binary one that has been presented; I am sure that was not the intention, but I just wanted to gently push back.
Rebecca Paul (Reigate) (Con)
I appreciate your giving way. The point that we are trying to make is that it is important to provide the information about palliative care. I understand the reservations of the hon. Member for Stroud about forcing someone to see a palliative specialist, but wording can be tweaked or changed to allow that choice. The key thing is that the opportunity to meet a palliative care specialist is provided so that the patient has the option, if they so wish, to seek that information.
At the end of the day, I think we can all agree that information allows people to make the right decision for themselves. Rather than getting too hung up on the exact wording of the amendment, I suggest that—this applies to quite a lot of the amendments—we think about the spirit of what we are trying to do.
The Chair
Before the hon. Member for Solihull West and Shirley continues, I should point out that when Members say “you” or “your” they are referring to me in the Chair. It has happened a couple of times. We all do it—we all make mistakes—but please make the effort not to use “you”.
Dr Shastri-Hurst
I am grateful to you, Chair, and to my hon. Friend the Member for Reigate for her intervention. She is right: it is absolutely critical that patients are given the full information in order to make an informed choice. I do not think any of us would disagree with that. But actually that goes entirely with the wording of the Bill as it stands. The hon. Member for Stroud has already highlighted the relevant provision—clause (4)(4)(c), which states that the initial discussion must explain and discuss with the patient
“any available palliative, hospice or other care, including symptom management and psychological support.”
Therefore a requirement to have those discussions is already stipulated in the Bill.
My hon. Friend the Member for Reigate makes an interesting point about who has that discussion. But are we saying that only a palliative care specialist is capable of having those discussions? Of course, those who work in the field are highly trained individuals, but we must not be unfair or do a huge disservice to other healthcare practitioners who provide excellent palliative care in this country.
My father was a general practitioner for more than 40 years. He provided a huge amount of palliative care throughout his career, both in the community and in hospices. Look at Marie Curie’s own website, which talks about the provision of palliative care in this country and very much about primary care provision and secondary care provision. Within secondary care, of course, are the specialists—clinical nurse specialists, occupational therapists, physiotherapists; I could go on. But of course, as the hon. Member for Stroud will know particularly well given his former profession, there is another body of general practitioners, community nurses, district nurses, advanced nurse practitioners, pharmacists and social workers, who are all involved in this process.
I think the amendment comes from a good place; at first blush, I can see absolutely where it is coming from. But despite that, it leads us down the bureaucratic thicket that Chris Whitty spoke about.
Naz Shah
Professor Sleeman’s evidence to me around palliative care says:
“‘Essential’ services are not provided: A good example is that our study of community services that are provided to people with advanced illness found that just 1 in 3 areas consistently provides a 24/7 palliative care telephone advice line—even though this has been a NICE recommendation since 2011…Another example is that the most recent NACEL audit (National audit) found just 60% of hospitals provide a 7 day face to face palliative care service— even though this is also a NICE recommendation, and was a recommendation in the One Chance to Get it Right report (that came out of the Neuberger review—around 2015.)”
I appreciate the hon. Gentleman’s important point, but does he agree that not every GP is able to keep abreast of all the palliative care advances being made, which palliative care consultants would know about?
Dr Shastri-Hurst
I am grateful for the hon. Member’s intervention, which leads on to the point I was going to make. We are getting bogged down in nomenclature about what speciality is involved when this is actually about training. It is about whether the individual having the conversation has the requisite skills to have a meaningful conversation. Clauses 5(3)(a) and 8(6)(a) stipulate that the co-ordinating doctor or independent doctor
“has such training, qualifications and experience as the Secretary of State may specify by regulations”.
That is the key part. This is about ensuring that people having incredibly sensitive, challenging and difficult conversations with patients about choices available to them at the end of life have the requisite skills and knowledge to do so. That may not be applicable to each and every general practitioner, but those having those conversations should have that knowledge.
Danny Kruger
My hon. Friend is making a thoughtful speech, but I am concerned that he suggests that the skills required are simply the skills of conversation. The skills required are the skills to understand the patient’s condition and lay out very clearly to them their prognosis and the treatment options available to them.
With all respect to my hon. Friend’s father and other GPs, I cannot accept that every GP is fully qualified to understand the dying trajectory of the patient before them—perhaps my hon. Friend will confirm his belief that that is so. If that is true, what is the point of the palliative care profession? We have GPs already and are now introducing psychiatrists and social workers into the mix; I do not understand why on earth it should be regarded as unnecessary to include professionals in palliative care—the key skill that we all recognise as so important in this space. Why not?
Dr Shastri-Hurst
I fear that my hon. Friend may be oversimplifying what I was saying. Perhaps I was not clear enough, so I will elucidate. I was certainly not suggesting that the required skills were merely those of being able to have a consultation and a conversation. I was talking about having the skills to have the information that needs to be imparted and the knowledge that underpins that and being able to articulate that within a consultation. It is a much wider picture than just having the communication skills—it is having the knowledge that underpins that. I am saying that that is not necessarily the domain only of someone who works in palliative care. There are a number of specialists who work within this field—it is a multidisciplinary field—and they all bring their expertise. The issue is about ensuring that anybody having these conversations has the knowledge base to conduct them properly.
Dr Shastri-Hurst
I will try to make some progress. I want to move on to the other point I want to address, which is around bogging down the whole process with layer upon layer of bureaucracy. We are talking about a relatively small group of patients who are in the last six months of life and are then battling against the system that is meant to be helping them. If we put in layer upon layer and hurdle upon hurdle, it will become a much more difficult system for people to navigate. That does not mean that it would be a less robust system, but it would be a more difficult system. We are trying to make life easier, not harder, for those patients. This comes back to the central point that Professor Whitty made in his evidence about overcomplicating Bills: we overcomplicate Bills out of good intentions, but rarely make the safeguards more robust—in truth, we make them less safe.
Juliet Campbell
I want to go back to the point about making the Bill more complicated by putting layer upon layer on it. My hon. Friend the Member for Bradford West spoke about health inequalities and how not everyone is given the same advice to the same level. If we were to introduce a palliative care specialist we would guarantee that everybody was given the same advice and information. We could therefore help reduce the health inequalities and inequalities of access to information that we know exist in our healthcare system.
Dr Shastri-Hurst
The hon. Member makes a valid point. The reality is that, regardless of specialty title, there will be individuals who are better placed to have certain conversations and discuss certain issues than others. I look back at my own clinical practice: some colleagues would have had a better bedside manner than others, for example. I do not think this comes down to the name of the specialty; it comes down to the underpinning skills and knowledge. That is the point I am trying to make.
We can get bogged down by saying, “Everybody has to see a palliative care specialist”. Of course, that is open to people: if they wish to have a referral to a palliative care specialist, they can see one. However, as the hon. Member for Stroud said, some people may not want that. We cannot be removing the autonomy of patients when their decision-making process is that they choose not to engage with that. They may want to speak to their GP because they have had a relationship with them over 30 or 40 years and have the patient-doctor relationship that is so important when dealing with these important discussions. Perhaps they would feel less comfortable having that discussion with a clinician they had just met for the very first time.
Dr Shastri-Hurst
I will give way because the hon. Lady has been very patient.
Naz Shah
I am grateful to the hon. Gentleman, who is being generous with his time. I want to bring in something that is very real for me at the moment. As a result of a hit and run, I have nerve pain for which I receive steroid treatment. I had treatment a couple of weeks ago and suffer from pain at the moment. My doctor is not a specialist in nerve pain; he has to refer me to a musculoskeletal service and I have been waiting for over a year for surgery.
I mention that because we already have care pathways for specialisms such as nerve pain. My hon. Friend the Member for Spen Valley referred earlier to somebody who had cancer and it was a horrible experience. I would like to have thought that in that instance they would have been offered tube feeding. However, to go back to the point, the GP does not necessarily have the skillset. My GP, and there are lots of them in that practice—it is a brilliant practice at Kensington Street—has to refer me on. That is the point of the Bill. The amendment speaks to developing an established care pathway. If we are to pass this legislation into law, we must ensure that there is a care pathway to explore palliative care.
At the moment clause 4(4), which my hon. Friend the Member for Stroud referred to earlier, says this has to be explored in the wider term. However, what that looks like is not a specialty. For some people with cancer and palliative care needs and six months to live, their trajectories could be—
Dr Shastri-Hurst
I am grateful to the hon. Lady for her intervention. She makes a number of points. First, may I say that I am sorry about her own health issues? I think she hit the nail on the head when she said that the GP may not be able to offer that service. For instance, take shoulder injections. Some GPs can do a shoulder injection with steroids; some will refer to the hospital for it. My father was a GP who could do them, but others would have referred to me when I was an orthopaedic surgeon and I would have done them in clinic.
This will not be right for every single general practitioner; the issue is about having a cohort of general practitioners who have the skill and ability, and about having a flexible system that works for patients. It all circles back to the training point. The individuals who do this have to have the requisite skills. That, of course, will be set down in regulation.
The other point that the hon. Member for Bradford West made is that clause 4(4)(c) says that any clinician having that discussion must be able to explain
“any available palliative, hospice or other care.”
It therefore follows that if the clinician is unable to do that because of a lack of skill or knowledge, they should refer on to somebody who can do it. That is the fundamental principle of having informed consent and discussion with patients. If a clinician cannot provide that information, they ask for somebody who can. That was not uncommon in my practice: if I had something that was outside of my area of knowledge or specialist interest, I would refer it to a colleague. That is how those conversations take place.
The Bill as it stands allows that flexibility for patients without confining them. But it gives them the very welcome option of a palliative care referral; that is entirely open to them—it is not closed off from them. Of course, they will be fed into the palliative care route anyway, following the trigger of their terminal diagnosis. They will be going on the journey, and having further conversations around their end of life care. Those are the points that I wish to make.
Rebecca Paul
A thought has suddenly been triggered: we are talking as if the provision of this service is undertaken by the NHS, but what are my hon. Friend’s thoughts if the service were being delivered privately? How does that interact with his automatic assumption that there would be a referral to a palliative care specialist?
Dr Shastri-Hurst
I do not think that offends the principle at all. Whether I was working within the NHS or the private sector, if a patient requested an onward referral to a different specialist, I would action that. If I did not have the requisite skills or knowledge, or felt that they would be better served by a different speciality, I would refer on to another clinician. I do not see how it would be treated any differently in the NHS than it would be privately. I am afraid that I do not follow that argument.
Kim Leadbeater
It is a pleasure to serve under your chairship, Mr Efford. I will address the amendments in two different ways. I will start by looking at the technical issues around amendment 281, and then I will look at why I believe, as other colleagues have said, that the amendments are not necessary given what already exists both in the Bill and in terms of good practice in our health service.
First, I worry that amendment 281 will not have the effect that my hon. Friend the Member for York Central (Rachael Maskell) intends. Clause 1(2), to which the amendment relates, provides an overview of the other clauses in the Bill, and therefore cross-refers to sections 5 to 22. Clause 1(2) does not impose duties on persons in and of itself. The duties are set out in the later clauses to which it refers. Adding an additional subsection to clause 1, as proposed by the amendment, would not result in a requirement that the person must meet a palliative care specialist. That is a technical detail to reflect on.
In addition, the term “palliative care specialist” is not a defined term. Palliative medicine is a designated speciality of the General Medical Council, and a doctor can apply to be entered on to the GMC specialist register for the speciality provided that they have the specialist medical qualification, training or experience. However, the current wording of the amendment means that it is not clear whether it is seeking to require the person concerned to meet with one of those specialist doctors, or whether a meeting with another medical professional specialising in palliative care—for example, a specialist palliative care nurse—would suffice. There is no equivalent specialist register for specialist palliative care nurses. It is a technical issue, but an important one.
I also point out that my hon. Friend the Member for York Central has put an incorrect explanatory note with the amendment, which refers to terminal illness. That might just be an error, but I wanted to point that out.
Coming on to the broader grouping of the provisions: as has been said by colleagues, the amendments are tabled with really good intentions by someone who cares passionately about the palliative care sector. But they are not necessary given the process that is already set out by the Bill. Both doctors already have to discuss all treatment options, and must make a referral if they have any doubt about the diagnosis. It is very clear from clauses 4 and 9 that both the co-ordinating doctor and the independent doctor must discuss all treatment options with the patient, so they will have all the options laid out before them. That is really important because we have to think about what happens in reality. This initial discussion, in many cases, may actually take place with a palliative care doctor, and in many cases it will be highly likely, given the nature of the conditions we are talking about, that the patient may already be receiving treatment or advice from a palliative care team.
We seem to have created a narrative where this conversation is happening in isolation. Actually, as other colleagues have alluded to, we have a patient-centred approach in our healthcare. This person does not just suddenly arrive and have this one random conversation. I am sure medical colleagues will correct me if I am wrong, but if a doctor is dealing with a condition of which they have very limited knowledge, one of the first things they would do would be to refer to a specialist.
As is covered in clause 9(3)(a), if the doctor has any
“doubt as to whether the person being assessed is terminally ill,”
they must
“refer the person for assessment by a registered medical practitioner who holds qualifications in or has experience of the diagnosis and management of the illness, disease or condition in question;”
Clause 9(2)(a) also states that both doctors must assess the patient’s
“medical records and make such other enquiries as the assessing doctor considers appropriate;”
They can speak to anyone they want to, and they would in reality—of course that is what they would do. They would not sit there and think, “Oh, I don’t know enough about this condition so I will just keep going.” They would refer to specialists.
It is also really important to acknowledge what goes on at the moment. I was looking at some research last night: NHS England also has comprehensive guidance on personalised palliative and end-of-life care through a comprehensive personalised care model. None of this stops with the introduction of assisted dying as a choice for people. It would continue to happen. Patients are already getting that really good level of care.
Danny Kruger
The hon. Lady is making a very good speech about how things should work and how things do work, in many cases, when the NHS does its job brilliantly. First, I want to correct the hon. Lady: subsequent amendments do impose the duty that is consequent to these amendments to clause 1, so it would be an obligation. Surely that is the point to make: what if the doctors are not as brilliant as she suggests? What if there is not an expectation that they should definitely seek expertise that they do not have themselves? To the point made by my hon. Friend the Member for Reigate, what if this service is provided outside the NHS by an independent charity or private provider set up explicitly to facilitate people’s assisted death requests, and has no intention of referring people to palliative care if they do not ask for it themselves? Would she be content for a private provider to refer somebody for an assisted death without a palliative care referral?
Kim Leadbeater
I do worry about the lack of faith in our professionals. We have medical practitioners on the Committee and we have heard stories of the very good practice that happens, so it concerns me that we are so cynical about our system. Ultimately, we have to put faith in our professionals to do their job and to take that patient-centred approach, as I firmly believe they do. Dr Sarah Cox from the Association for Palliative Medicine said in her evidence to the Committee:
“In clinical practice, we make all these decisions in multi-professional teams…shared decisions are much better quality, much more robust and much safer.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 74, Q90.]
I absolutely agree with her, and that would continue to be the case.
Kim Leadbeater
But it does not say that at all. It actually says that they have to refer, and that they have to consult with other people. That is part of the process. That is exactly what happens now. Professor Aneez Esmail, who is the emeritus professor of general practice at the University of Manchester and who has been a practising GP for over 30 years, told us in his evidence to the Committee:
“In terms of holistic care, currently when I look after dying people I never do it on my own; I am with district nurses, Macmillan nurses, or on call to a palliative care consultant. There is already a team of people looking after dying people…palliative care…works very well and it works in a multidisciplinary way. I think that this legislation will allow a much more open discussion and proper monitoring. It will improve training, guidance and everything else. People say that it will enhance palliative care, and that is what I think will happen.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 171, Q219.]
Indeed, as was referred to by the hon. Member for Solihull West and Shirley, if we consider the training included in the Bill, which doctors will undergo as part of the introduction of assisted dying, evidence from other jurisdictions shows that these are very detailed conversations where health professionals work together in the same way as they do at the moment in end of life care and decision making. As I have said repeatedly, the training is fundamental. I agree absolutely with Dr Rachel Clarke, who told us:
“If there is one thing that I would say to the Committee regarding making the Bill as robust, strong and safe as possible, it is: please consider seriously the matter of education and training”.––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 71, Q85.]
I agree 100% and I have embedded that in the Bill.
Sean Woodcock (Banbury) (Lab)
My hon. Friend quotes Dr Rachel Clarke. I was profoundly moved by her evidence. She was very clear that she wanted to talk about the NHS as it is, not as we would like it to be. Despite the efforts the Government are putting into bringing down waiting lists, there is still extreme time pressure on doctors. There are extreme waiting lists for people to access specialist care, which may impinge on the ability of doctors to carry out what my hon. Friend is asking. Does she accept that?
Kim Leadbeater
That brings me on very nicely to my next point, so I thank my hon. Friend for his intervention. At the moment, the Bill accommodates a two-year implementation period, which is really important because it will take time to put the procedures in place: it will take time to train people and it will take time to work holistically with the overall healthcare system. It could end up being longer than two years. If that is the case to put all the robust systems in place—to improve things, and to work holistically with palliative care and other aspects of the NHS—then that is the right thing to do, and I would be open-minded to a conversation about that.
To finish, I also note that the General Medical Council’s “Good medical practice” guide, which is the framework of professional standards, already provides that in providing clinical care a doctor
“must refer a patient to another suitably qualified practitioner when this serves their needs”.
This is what doctors do: they refer if they need extra advice; they take a holistic approach.
Kit Malthouse (North West Hampshire) (Con)
I just want to quickly point out that we have a check on the conversations that happen in the first stages. In clause 8, which covers the second doctor’s assessment, that second doctor must be satisfied that the individual has a “clear, settled” and, critically, “informed” wish to end their own life. So, there will be a doctor who is verifying that the person is informed properly about their options. My concern about the amendments is that, as the hon. Lady says, we are inserting now a third doctor into a system which, with regard to the panel, will already have three, four or five specialists involved in the assessment of the care.
Kim Leadbeater
The right hon. Gentleman is absolutely right. It feeds into comments that have already been made about how difficult we are making the process. I agree that this should be a difficult process—it should be a robust process, with thorough checks, safeguards and balances throughout—but we are in danger of forgetting the dying person at the heart of the process.
Kim Leadbeater
I am going to finish, if I may.
We need to be really careful that we take a person-centred approach, as happens now. Doctors, medical practitioners and healthcare professionals quite rightly take a holistic patient-centred approach. That approach will be further enhanced by the robust training the Bill incorporates, and by adding the extra layers of safeguards and protection. Really importantly, it would open up conversations about death and dying.
The Minister for Care (Stephen Kinnock)
It is a pleasure to serve under your chairmanship, Mr Efford.
As previously stated, my role, and that of the Minister of State, Ministry of Justice, my hon. and learned Friend the Member for Finchley and Golders Green, is not to give a Government view, given that the Government remain neutral on the Bill, but to outline the legal and practical impacts of amendments tabled.
The amendments are intended to add a new step in the process set out in the Bill, requiring consultation with a palliative care specialist. The purpose of amendment 281 is to require a person to have met a palliative care specialist before completing the required steps and assessments to end their life. The purpose of the amendment is to ensure that the person has understood the full range of end of life options available to them. Our assessment suggests that the present drafting, adding a subsection to clause 1(2), would not achieve that effect without further amendments to other clauses in the Bill. The amendment would increase demand on palliative care specialists and, should Members decide to amend the Bill in this way, we would need to work with the NHS and other provider organisations to assess how to operationalise it.
Amendments 298 and 299 would require the co-ordinating doctor to have received confirmation that the person seeking an assisted death has had a consultation with a specialist in palliative medicine about palliative care options before they are able to make a first statement under clause 7(3)(a). That would mean that a co-ordinating doctor would not be able to make a statement following a first assessment, and therefore refer a person to the independent doctor for a second assessment, unless the person had had a consultation about palliative care options with a palliative care specialist. As with previous amendments, the amendment would increase demand for palliative care specialists, and we would need to work with the NHS and other provider organisations to assess how to operationalise it, should hon. Members decide to pass amendments in that area.
Naz Shah
I have a few concerns about what we have just heard in relation to the amendment. One of them is in relation to Dr Cox’s evidence. What Dr Cox actually said was:
“The second difference, I would say, is that you are absolutely right that we do make those decisions with patients—with their families, if they wish—but in a multi-professional team. I would almost never make those decisions as an individual doctor without the support of my colleagues, for several reasons. First, as I have said already, that makes for much better decisions”. ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 74, Q91.]
Danny Kruger
To pick up on that point about Dr Cox, I think it is critical that the hon. Member for Spen Valley cited Dr Cox in support of the hon. Lady’s contention that the Bill is adequate. Dr Cox, in her evidence, was saying that there is a problem with the Bill because it does not require the multidisciplinary consultation that we all think needs to happen. Dr Cox was suggesting that the Bill should be amended in order to ensure that the NHS does its job properly, and that multidisciplinary consultations are held. Her evidence was not in support of the Bill as it stands.
Kim Leadbeater
On the point made by the hon. Member for East Wiltshire, the Bill does not replace what already happens, and what Dr Cox was saying was that those conversations are already happening in a multidisciplinary way. We do not take that away.
Naz Shah
One of my concerns is that although the Government position in relation to the Bill, as they have said, is neutrality, the Government, in my opinion, have taken a position without an impact assessment, which might suggest that there is some ambiguity. Would the Minister therefore support redrafting potential amendments to include that? If it did specify a doctor or nurse, would the Government then, in their tidying-up, be prepared to accept that amendment?
Daniel Francis (Bexleyheath and Crayford) (Lab)
Referring back to Dr Cox, she said:
“We need to make sure that the 75% to 90% of people who are dying and need palliative care are getting it. We need to make sure that there is not inequity in palliative care, so that you do not have to be white and rich and have cancer to get good palliative care. We need to make sure that hospitals have seven-day services. Seven-day-a-week cover is unavailable at 40% of hospitals.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 78, Q101.]
Does my hon. Friend agree that we need an inequality impact assessment to understand the current position and to get that right, in line with the Bill?
Naz Shah
My hon. Friend is absolutely right. Without the impact assessment, how do we know what we are dealing with? That would be a normal way of progressing a Bill and dealing with amendments such as these. It feels as though we have just talked about something when the Government have already had a position on it, or have supported a particular position on an amendment.
To conclude, I will press the amendment to a vote, simply because it is important that we explore every option. We are already specifying what doctors have to do. I maintain again that there are 100,000 people in this country who do not access palliative care as it is. Palliative care is crucial when we are talking about end of life and people who have had a diagnosis of less than six months to live.
We will talk about illness and diagnosis in the next round of amendments, but on this amendment, I do not think that ensuring that somebody has at least explored that option is, as the hon. Member for Solihull West and Shirley repeated at least three or four times, “bogged down”. For me, it is not bogging down when we are talking about providing assisted death. The Bill is the biggest legislation on a conscience vote since 1967 in this House, and I do not care how long it takes. I feel very strongly that if we are to deliver a Bill that my hon. Friend the Member for Spen Valley said has the tightest safeguards in the world, then this debate has to happen. These conversations must happen and be explored not just for us here as parliamentarians, but in order for us to go away and say that we have done the best we can.
Question put, That the amendment be made.
The Chair
I point out that this is an opportunity to discuss clause stand part, not to cover the ground of amendments that have already been debated.
Danny Kruger
I will be quick, Mr Efford. I appreciate that we have been exhaustively over the detail of the amendments. I deeply regret that none of the amendments that were tabled to introduce stronger safeguards has been accepted. I want to take this opportunity to explain briefly what the Committee has done by rejecting those amendments and what we will be doing by agreeing to the clause without the amendments. I will not seek to divide the Committee on the clause, because I recognise that it enables the whole Bill to proceed, as the House wished on Second Reading, so I recognise that the principle of the Bill is represented in the clause. We wanted to tighten it, but have failed to do so.
Jack Abbott (Ipswich) (Lab/Co-op)
I say gently to the hon. Member that—particularly on the previous clause—I have been very sympathetic to several of the amendments. Candidly, however, with due respect to all the hon. Members across the House who submitted this, I do not think that they have been particularly well written. I think that they leave quite a lot of ambiguity in a lot of areas. We had a discussion in the week before the recess, on a number of areas, about the word “only”. I heard it suggested earlier that the principle is about the spirit in which things are taken.
The reality is that I am very sympathetic to a lot of what is proposed, but a number of the amendments leave quite a lot of open ends. That has been a particular issue. I have been very open and have said that in principle I am supportive of assisted dying, but that I could not support it because the Bill was not strong enough in its current state. I do not think that the amendments tabled so far will strengthen the Bill; in fact, they might leave a lot of open ends, despite the very good intentions behind a lot of them.
Danny Kruger
I am grateful to the hon. Gentleman for explaining why, having opposed the Bill on Second Reading, he now seems to be supporting it. I wish I had heard, during our debates in the past two weeks, his specific objections to the amendments. If he felt, as he says, that the Bill is not strong enough, we would have welcomed his own amendments to strengthen the Bill in a form of words that he would find adequate. Perhaps that is what we will hear from him.
Jack Abbott
I did articulate a number of times where I felt that some of the amendments were not tight enough in those areas.
Danny Kruger
The hon. Gentleman has been on his feet; I appreciate that and am very grateful for his contribution to the debates that we have had.
I simply want to make the point that what the House voted for on Second Reading was the principle of assisted dying. What many members of the public who support the Bill think they are getting is a Bill that is safe—a Bill that is restricted explicitly to people at the very end of their life, who face extreme pain and suffering as they die; who are fully informed of what they are doing; who face no questions of external or indeed internal coercion; who have the absolute ability to understand what they are doing. Those are the things that people want to see in the Bill; those are the things that we have sought to effect through the amendments that we have tabled, and which the Committee has rejected.
Very explicitly, as a result of the rejection of these, I believe, very plainly written amendments, the fact is that under this Bill you can be depressed and suicidal and still regarded as having capacity to have an assisted death. You can be very marginalised—you can be a prisoner, you can be homeless—and still be regarded as eligible. You can have been influenced or encouraged by others and still be eligible. You can do it because you feel a burden. You do not need to be in any kind of pain. You do not need to be in the tiny proportion of cases that palliative care cannot help. As the hon. Member for Spen Valley accepted in the previous sitting, you can seek an assisted death for the sole reason of saving your family money, and you would be granted an assisted death on those grounds. The fact is that in rejecting these amendments, the Committee has decided and has demonstrated that the Bill is much wider than the campaigners portray.
I want to end with this point. I think there are two ways of approaching assisted dying—two essential framings of a Bill to legalise it. One is an autonomy Bill, which simply says that if people seek help to commit suicide, within certain broad parameters they should be able to do so, and there is no question of other people interfering with that choice; if they sign the requisite paperwork, they should be able to have an assisted death. The alternative is what we might call a safeguarding Bill—one where eligibility for the procedure is strictly limited and there are very strong, robust safeguards in place to protect the most vulnerable people.
The hon. Lady, and Members speaking in support of the Bill, have repeatedly emphasised that this is a safeguarding Bill. They want this Bill to be built around safeguards for the vulnerable. They respect the arguments that we make about the dangers that an open-ended assisted dying Bill would create. But the fact is that, as we have seen in the course of the debates on this clause, this is not a safeguarding Bill; it is an autonomy Bill. It is one that allows people to proceed to an assisted death because they want one, if they meet certain very loosely drawn criteria.
Kim Leadbeater
The reality is that this Bill is both. Of course it is about personal autonomy, choice and dignity for people who are coming towards the end of their life, but it has to be safeguarded as well. It is both. If I may say so, I think that the hon. Member makes quite an unfair characterisation of the robust, powerful debate that has taken place in Committee during the time that we have spent together. I think it has been extremely well informed. People have listened intently to other points of view and opinions, and it does the Committee a disservice to suggest otherwise.
Danny Kruger
We are all being very courteous, and it is absolutely right that we should be. I have absolute respect for the good faith of every Member here, but let us not use cotton wool in these debates. I am sorry to say that I do not accept that the Committee has listened—well, it might have listened closely, but it has not accepted a single amendment, including amendment 281, which would have put into law the principle in which the hon. Member for Bradford West believes, which is that palliative care should be an option. Why was that not accepted? The Committee has decided that it will proceed with the Bill as it is.
The fact is that the Bill will give maximum autotomy, within very broad parameters, to patients, many of whom will be very vulnerable. It is an autonomy Bill masquerading as a safeguarding Bill. When we attempt to strengthen the safeguards, they are described as bureaucratic hurdles. If the Bill becomes law, I worry about what will happen to the very limited safeguards that do exist. What we see elsewhere will happen, which is that the safeguards that do exist are treated as bureaucratic hurdles. They are in fact treated, and explicitly described, as we heard from the Australian witnesses, as barriers to a human right. What were safeguards become discrimination. I am afraid that that is the road we are going down.
The point about autonomy is often made. As I say, I think that this Bill actually has autonomy at its heart. The hon. Member for Spen Valley is right to make that point. That is really what is going on here. She wants people to be able to request help to commit suicide—to end their lives. The fact is that for the most vulnerable people, creating this option, especially when we have now switched off the obligation to seek a palliative care pathway and directed people straight down the road towards an assisted death—
Danny Kruger
I am sorry if it offends Members, but the fact is that the Bill in its present form, with the amendments rejected, will place no obligation on doctors to refer people to palliative care or to seek a palliative care consultation. Many will do so, of course—many good doctors will do exactly that—but they will not be obliged to. If we are imagining that every doctor will be as brilliant as the best doctors, I am afraid that I will have to talk about the Liverpool care pathway and the many tragic scandals that we are constantly dealing with. It is simply not the case that the option of a palliative care consultation equates to the absolute expectation that it will happen.
Danny Kruger
We have debated that issue; I apologise.
My concern is that the Bill, which is masquerading as a safeguarding Bill but is actually an autonomy Bill, will end in less autonomy for the most vulnerable patients, who will find themselves on this conveyor belt, internally pressured and encouraged to seek an assisted death when it is not in their interests. I invite the Committee to reflect on what we have done, but as I have said, I do not propose to divide the Committee on clause 1 stand part.
Rebecca Paul
Under our current law, assisting someone to commit suicide is a criminal act. Clause 1 of this Bill is where we cross the Rubicon, moving away from well-established principles into a new era in which the state is empowered to help individuals to die.
This monumental decision is one for Parliament in the coming months. However, what we must do on this Committee is bolster the safeguards so that the Bill is truly as safe as it can be. Our priority must always be the vulnerable: those who could be coerced into something that is not in their best interests, and those with no one to advocate for them or protect them, who could end upbeing pushed into a process because that is the easiest and cheapest option for everyone. This law must work for everyone, not just the privileged few.
That is why I am so disappointed that at the end of nearly three days of debate, there has been not one improvement to the safeguards—not one. We asked for amendments to exclude people with impaired judgment and the depressed and suicidal; this Committee said no. We asked to protect those who are unduly influenced or encouraged by others to seek assisted dying—
The Chair
Order. We are not discussing the amendments again now. This debate is about clause 1 standing part of the Bill.
Rebecca Paul
Thank you, Mr Efford. I am perplexed as to why some of the straightforward improvements to the safeguards have not been accepted. That should give us all pause for thought. If everyone here wants this to be the safest assisted dying service in the world, we must learn from other territories and improve the safeguards. Our priority should not be to make the service as accessible as possible, with as few barriers as possible, or to make it as easy as possible for medical practitioners to sign off. Time and again, throughout our proceedings, the importance of autonomy has been given as the reason why amendments cannot be accepted, but surely that must be balanced against what is in someone’s best interests.
It is clear that in other areas of medicine a best interests approach is taken, for example under section 63 of the Mental Health Act 1983, which states:
“The consent of a patient shall not be required for any medical treatment given to him for the mental disorder from which he is suffering”.
A patient can thus be deemed to have capacity, and yet still receive treatment that they have refused, for example in the force-feeding of a young girl with anorexia. Those who argue for full autonomy would no doubt rail against this best interests approach. However, I suggest that it is always worth considering what we would want to happen if it were our daughter.
This is not an easy balance to get right—I completely concede that—but right now the Bill has no best interests component. That means that if anyone inadvertently qualifies for assisted dying but should not, for example an anorexic girl who has refused treatment, there is no safety mechanism to take her out of scope. The amendment tabled by my right hon. Friend the Member for Braintree (Mr Cleverly) would have gone some way to addressing that.
Clause 1 will profoundly change how society views suicide. Data from overseas territories indicates that introducing assisted dying can actually increase the number of unassisted suicides. In Oregon, whose system this Bill is specifically based on, non-assisted suicide has increased by a statistically significant amount. That demonstrates the seismic shift in attitudes that accompanies this, so when we tell our young people that suicide is not the answer and to seek help, we must do so knowing full well that the key message will be undermined by the availability of an assisted dying service, which may be plastered across billboards and advertised on daytime TV.
Rebecca Paul
I thank the hon. Member for his intervention, but I respectfully suggest that that is not the case and there is data. Professor David Paton found a 6% increase overall, and interestingly it was 13% for women.
Kim Leadbeater
I would be interested to know whether that data shows a link or a direct causation effect.
Rebecca Paul
I thank the hon. Lady for raising that point. I think that what has been looked at is the number of unassisted suicides. The hon. Lady makes the good point that obviously we need to look at all the different factors that could be part of that, but I am just making the point that when we look at territories that have introduced assisted dying, we find that at the point at which it is introduced, we generally see, in most territories, an increase in unassisted suicide. I do not think that we should rush to disregard that. We need to recognise that in helping a small group of people at the end of their life, which undoubtedly this Bill will do, there will be a price to be paid. That price will be paid by our young people and other vulnerable groups.
I will not vote in favour of clause 1—I do not think that there will be a Division on it anyway—but I will not oppose it either, for the reasons that my hon. Friend the Member for East Wiltshire set out. I understand that it is the key clause in order for us to progress and continue the debate, which is what Parliament wishes us to do, but I hope that the Committee will be more receptive to improving the safeguards as we progress through the Bill. The amendments really were tabled in good faith. We did our best to write them in a clear way, but obviously the private Member’s Bill process makes that more difficult. This is not a Government Bill, but we are all doing the best we can to table amendments that would improve the safety of the Bill.
Naz Shah
I just have some concluding remarks. None of the amendments was voted for. I feel that in the clause 1 stand part debate, huge opportunities have been missed. I have talked a lot, throughout the debates, about the issues of people from ethnic minority communities. Opportunities were missed to safeguard disabled people and people from ethnic minority backgrounds.
My hon. Friend the Member for Ipswich made a point about amendments being clear, and about ambiguity. The truth is that if the amendments were supported in principle, they could have been tidied up by Government. There are some good amendments that could have been clarified by the Government. In principle, they were good options. I struggle with the whole narrative throughout the debate on clause 1: “Yes, we accept the principle, but we are not going to do it because it is ambiguous or the wording is incorrect.” There is lots of wording that we will debate throughout the rest of the Bill that is not quite clear, and that is the whole point of going through this exercise. Going forward, I encourage us, as the hon. Member for Reigate did before me, to do as we have been doing, with sincerity, in trying to make this Bill the best in the world it can be, as my hon. Friend the Member for Spen Valley intends.
Stephen Kinnock
I will make some brief remarks on the legal and practical effect of clause 1, as amended, to assist hon. Members in making their own assessment. Clause 1 sets out the eligibility criteria that a person must meet in order to request to be provided with lawful assistance to end their own life under the provisions of this Bill. A person must be terminally ill; this term is defined in more detail in clause 2.
Clause 1(1) sets out a further four requirements, which require that a person must also have the necessary capacity to make the decision, which is to be read in accordance with the Mental Capacity Act 2005; be aged 18 or over; be ordinarily resident in England and Wales and have been resident for at least 12 months; and be registered as a patient with a GP practice in England or Wales. This clause provides that, in particular, clauses 5 to 22 of the Bill require steps to be taken to establish that the person has a clear, settled and informed wish to end their own life and has made the decision that they wish to end their own life voluntarily and has not been coerced or pressured by any other person in making that decision.
The clause, as amended by the insertion of new subsection (3), will ensure that the service can be accessed only by an individual ordinarily resident in England and Wales. That amendment, amendment 180, has been drafted to give effect to the policy intent of my hon. Friend the Member for Spen Valley for this legislation: that it is to apply only to those in England or Wales and is not to be accessed via medical tourism.
As I have said, the Government remain neutral on the substantive policy questions relevant to how the law in this area would be changed. The clause is a matter for the Committee and Parliament to consider, but the Government’s assessment is that the clause, as amended, is workable, effective and enforceable.
Question put and agreed to.
Clause 1, as amended, ordered to stand part of the Bill.
Clause 2
Terminal illness
Danny Kruger
I beg to move amendment 399, in clause 2, page 1, line 22, leave out “, disease or medical condition” and insert “or disease”.
This amendment ensures that a terminal illness under the Bill can only be an illness or a disease and not a medical condition.
The Chair
With this it will be convenient to discuss the following:
Amendment 400, in clause 2, page 2, line 1, leave out “, disease or medical condition” and insert “or disease”.
This amendment is consequential on Amendment 399.
Amendment 401, in clause 2, page 2, line 5, leave out “, disease or medical condition” and insert “or disease”.
This amendment is consequential on Amendment 399.
Amendment 11, in clause 2, page 2, line 7, leave out from beginning to first “of” in line 8 and insert—
“(3) A person is not to be considered to be terminally ill by reason”.
This amendment amends clause 2 to say that a person cannot be considered terminally ill by reason of having mental illness or a disability.
Amendment 181, in clause 2, page 2, line 8, leave out from “ill” to end of line 10 and insert—
“only because they are a person with a disability or mental disorder (or both).
Nothing in this subsection results in a person not being regarded as terminally ill for the purposes of this Act if (disregarding this subsection) the person meets the conditions in paragraphs (a) and (b) of subsection (1).”
This amendment clarifies that the purpose of subsection (3) is to emphasise that only having a disability or mental order does not make a person “terminally ill” and therefore eligible for assistance.
Amendment 283, in clause 2, page 2, line 10, at end insert—
“or one or more comorbidities alongside a mental disorder within the meaning of the Mental Health Act 1983”.
This amendment would set out that a person who has a co-morbidity with one or both of a mental disorder or a disability is not considered terminally ill by virtue of those comorbidities alone.
Danny Kruger
I said in the last debate that this is either a safeguarding Bill or an autonomy Bill. [Interruption.] Or that it is both, but the claim has been that it is a safeguarding Bill and that there are very strong safeguards. If so, and if we are going to stress the safeguards, as I think we should, that means being very clear about who is eligible. It means having proper, meaningful guardrails showing who is inside and who is outside the scope of the Bill. I suggest that the Bill’s guardrails are not strong, safe or impermeable; they are broken fences. We need to mend those fences in this Committee in order to make the Bill safe.
This group of amendments includes a set in my name that would restrict eligibility to people with terminal diseases or illnesses, and another set that would build stronger safeguards explicitly for disabled people and people with mental disorders. The purpose of the two sets of amendments is the same, but they approach the challenge from opposite ends. I will speak first to the amendments in my name.
Quite simply, I want to remove the words “medical condition” from the definition of terminal illness. The reason for that is straightforward: some medical conditions are likely to also amount to a disability. As Fazilet Hadi, the head of policy at Disability Rights UK, told the Committee in evidence, there is a “huge overlap” between disability and terminal illness. The distinction between the two is notoriously blurred, and there is a reason why no disability rights organisation backs this Bill: it is here in this innocuous phrase “medical condition”. Removing that phrase will provide an additional degree of protection for some disabled people, which I think is a good enough reason to do it.
There is another group of people whom we do not hear from much in these discussions, but about whom we should perhaps be most concerned, because there are so many of them—they are almost all of us. I am talking about the frail. Frailty is an important word in this debate. I refer hon. Members to the briefing submitted in recent days by the British Geriatrics Society; it is a powerful document that highlights an essential challenge for this Bill. What is frailty? Is it a disability? Is it a terminal illness? Is it both? Is it neither? It can be noted on a death certificate as a cause of death and, even if it is not listed as a cause of death—this is a crucial point—it is the most common dying trajectory for people in the UK. More people are frail as they approach the end of life than are not.
Kim Leadbeater
I am interested to know where the hon. Member has got the idea that someone is going to scrap the six-month prognosis from.
Danny Kruger
Well, if the hon. Lady will say that she will never, at any stage, support a proposal to extend it beyond six months, I will be very glad to hear it. My concern is that we already have amendments tabled to do exactly that, which we will be debating shortly. I hope they will be rejected, but my confident expectation, on the basis of other countries, including the Australians who gave evidence to this Committee, is that the six-month safeguard will soon be seen as a barrier to a human right, because there is indeed no logical basis for such an arbitrary date.
The people who currently deal with the six-month prognosis, in the context of benefits and pensions, campaign that it is arbitrary and unworkable—rightly, I think—so I am afraid that I confidently expect the six-month barrier to be challenged in due course. If the hon. Lady is prepared to say that she would never do that, however, I would be very reassured.
Kim Leadbeater
Would the hon. Member agree that the purpose of the Committee is to look at the Bill before us? That is why we are here. I understand his concerns, his reservations and his nervousness about what might happen in future, and that is an important conversation to have, but the purpose of the Committee is to look at the Bill as it stands today; that should be the focus of our deliberations.
Danny Kruger
Yes, but I simply state on the record that I believe that this is not the end, but the beginning of a wider Bill that would follow if we passed this one. I am encouraged by what the hon. Lady says, or implies: that she does not want to go further than this Bill.
My plea to the Committee is straightforward. Let us confine eligibility to the people who the campaigners talk about: those with diseases or illnesses that are genuinely terminal. We can do more to strengthen that definition with later amendments, but, first, we have to remove the gaping hole in the fence that is this term “medical condition”. Let us remove that term.
Tom Gordon (Harrogate and Knaresborough) (LD)
Marie Curie’s definition of a terminal illness is
“an illness or condition which cannot be cured and is likely to lead to someone’s death”.
It is obviously one of the best-known end of life charities, so how does the hon. Member reconcile the differences he has with its professional expertise?
Danny Kruger
I am very happy to use the word “condition”—we all use it quite casually, including me—but we are concerned about legislation here. As I explained, if we include the term “medical condition”, courts could interpret that as a development—an addition—to the existing law on terminal illness, which refers only to illness and disease. The courts would be right to conclude that Parliament meant more than illness or disease, which is why it is important to be explicit about what we are talking about: illness or disease.
I think we should remove that term, but if other Members do not, I would like to understand why. The hon. Members for Harrogate and Knaresborough or for Spen Valley might have some suggestions, but I would be grateful if somebody could clarify, explicitly, what is meant by “medical condition” that is not caught by the terms “illness” or “disease”. What are the meanings of the three terms, and why do we have to have “medical condition”? It might well be that there are conditions that would not be captured by “illness” or “disease” that would be appropriate.
Lewis Atkinson (Sunderland Central) (Lab)
On that point, I will quote directly from Chris Whitty’s evidence to the Committee:
“there are people who may not have a single disease that is going to lead to the path to death, but they have multiple diseases interacting, so they are highly frail; it is therefore not the one disease that is the cause, but the constellation that is clearly leading them on a path inexorably to…death”.––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 32, Q5.]
From my perspective, it is about that “constellation” where death is clearly going to happen as a result of a combination of different conditions, illnesses or diseases. That it is where that is very clear, and, because of the six-month eligibility in the Bill, we have that nailed down. That is the importance of including the term, because it is not one disease that leads to death; it is the constellation of diseases and illnesses that will inexorably lead to death.
Danny Kruger
I am grateful to the hon. Gentleman. I thought that might be the case too, and I was wondering about that, but I am very concerned about some of the evidence that Professor Whitty gave. I regret that the hon. Member for Spen Valley has removed the role of the chief medical officer from the process that she is designing by introducing the new commissioner, but I will not be sorry to see that particular chief medical officer excluded from the process. He has made significant mistakes; he had to write to the Committee to explain that he had misrepresented the Mental Capacity Act, and, on his evidence, the Committee voted to reject certain amendments.
I am concerned about what Professor Whitty said, but if the reason for including “medical condition” is to reflect the fact that there might be multiple diseases or illnesses that, together, mean that somebody is terminally ill, that is what should be stated in the Bill. It could very well include “a combination of illnesses or diseases that amount to terminal illness”. My concern is about this new concept of a medical condition, which, as I have said, implies something different from a disease or illness.
The Bill would say “the person’s death in consequence of illness or disease”—if we remove “medical condition” —so that would be the qualification or eligibility. If there is a number of illnesses or diseases that amount to a fatal prognosis, that would be captured in the clause, even once we have excluded medical condition, because the singular “illness” or “disease” would, as I understand it from our guidance on statutory interpretation, include the plural. If it is about there being a number of illnesses or diseases that add up to a fatality, the Bill as I propose to amend it would be adequate to the scenario that the hon. Member for Sunderland Central described and that Professor Whitty accounted for. The question is, what is additional illness or disease, or illnesses or diseases, that are captured by the term “medical condition”?
Kit Malthouse
Let me give a quick example. Amyotrophic lateral sclerosis is described as a condition rather than a disease or an illness. ALS is not dissimilar to motor neurone disease, but nevertheless people regard themselves as having a condition rather than a disease.
Danny Kruger
Again, I am interested in that, because I would be surprised if that condition were not adequately captured by the term “illness” or “disease”. If not, we should seek further clarification, because we need to be very specific. Illness or disease has been adequate; it is adequate in the current law on terminal illness for eligibility for benefits and pensions. I await clarification on what is added by the term “medical condition”, because my concern is that it opens the door to frailty. Going back to Chris Whitty’s evidence, I am concerned at his suggestion that frailty should be an eligible condition for an assisted death.
I will wrap up shortly so that hon. Members have time to speak to other amendments, but I will quickly refer to amendment 181 tabled by the hon. Member for Spen Valley and amendment 11 tabled by my hon. Friend the Member for South Northamptonshire (Sarah Bool), which attempt to do the same thing as my amendments. They seek to protect disabled or mentally ill people, but they do so explicitly by disapplying the provisions of the Bill for those groups, or they attempt to do so. Only amendment 11 actually does, while amendment 181 fails to do so, in my view.
Let us look at subsection (3), which attempts to protect disabled people and those with mental disorders, but which, on closer inspection, is ineffective or even meaningless. In statutory interpretation, the first phrase,
“For the avoidance of doubt.”
indicates that the subsection does not add anything to the Bill except clarity. It is intended not to change the law that is being enacted by the Bill, but to clarify the meaning of the Bill. My point is that it does not add anything—in fact, it signals that the clause can be disregarded. It is like an explanatory note and not actually relevant to the Bill. Its effect therefore negates the point that it tries to make. In including it, the hon. Lady protests too much and exposes the weakness that the clause fails to overcome. It invites a court to disregard the protection it pretends to offer by stating that that protection has no force except what is elsewhere in the Bill.
Kim Leadbeater
I agree with the hon. Member to some degree in terms of the legal drafting. I have been advised that the expression “for the avoidance of doubt” is not generally used in a Bill if the Bill is already clear, which this is—I have been reassured by parliamentary counsel about that—but I was keen, having met disabled people and disability rights activists, to have it very clearly in the Bill that by virtue of having a disability, a mental health condition or a mental disorder, someone would not be in scope of the Bill. It was a very clear drafting decision and I stand by that decision; I think it is the right thing to do so that we are clear who is not covered by the Bill.
Danny Kruger
I am grateful to the hon. Lady; it is helpful to understand her thinking. Her amendment is an attempt to further clarify her purpose, which is to communicate that we cannot have an assisted death only because of a mental disorder or a disability. I know that other colleagues will speak to that point more explicitly.
My point is that
“For the avoidance of doubt”
is a massive signal to the courts that the subsection is meaningless. The advice was right that it is not usual to include that phrase, as it signals that nothing is being added. My concern is that it does not add anything, and the inclusion of the word “only” further demonstrates the hollowness of the protection that it purports to offer. The fact is that someone will still be able to get an assisted death because of a physical illness that derives from a mental disorder or disability. That is my concern with the later parts of the clause, but I will leave other Members to make that point.
Dr Opher
There is a lot to talk about in this group and I thank you, Mr Efford, for calling me to speak. I would also like some confirmation about the term “medical condition”, and I agree with the hon. Member for East Wiltshire that we need to absolutely nail that. I am still to be convinced on the question of a condition that does not come under illness or disease but would come under “medical condition”, so I agree that we need to be very clear about what that means.
Frailty is very often diagnosed in older people and I fear that “medical condition” could be equated with that, which would open up the Bill. We need to decide whether we want to do that. Personally, I would not support that in any way. If this is an opening for that, we need to close it, so I agree with the hon. Member in that respect.
Some of the other amendments do not materially add anything to the Bill. On changing “an inevitably” to “a typically”, I do not think that would change the Bill—in fact, I think it would weaken it slightly, so I would not support amendment 123.
Both amendment 11 and amendment 181 talk about how we can exclude mental health issues as a cause for seeking assisted dying. My personal feeling is that the Bill is strong enough as introduced to exclude that. I point people to clause 2(3):
“For the avoidance of doubt, a person is not to be considered to be terminally ill by reason only of the person having one or both of—
(a) a mental disorder, within the meaning of the Mental Health Act 1983;
(b) a disability, within the meaning of section 6 of the Equality Act 2010.”
I think that is pretty tight; I do not think that people with anorexia could be given an assisted death under this legislation. That is my personal view, and I am happy to be persuaded otherwise if the whole Committee thinks we need to tighten up the measure significantly. It is important to make that very clear so that the Bill cannot be amended away from what we wish it to be. I think all of us would say that we do not want patients with anorexia to be able to access assisted dying—I have not spoken to anyone who does not agree—so the question is how we nail it down in the Bill.
Sarah Green (Chesham and Amersham) (LD)
I have great sympathy with amendment 11 in particular, which is clearly motivated by a desire to ensure that having a mental illness or disability alone does not qualify someone for an assisted death under the Bill. It is worth saying that clause 2(3) already does that and, therefore, the amendment is not necessary. However, the hon. Member for Spen Valley has tabled amendment 181, which further tightens that language. In my view, amendment 181 strengthens the Bill by simplifying the language to make it absolutely clear that a person is not considered to be terminally ill if they have a mental disorder or a disability alone. The chief medical officer, Professor Whitty, encouraged us to keep this simple, and that is precisely what amendment 181 does. Therefore, I support the amendment.
Rebecca Paul
I rise to speak to amendment 11, which stands in the name of my hon. Friend the Member for South Northamptonshire. This is one of the areas of the Bill where we all agree on what we are trying to achieve, so it comes down to making sure that the drafting does exactly what we all intend in order to protect people.
The definition of “terminal illness” in the Bill has two components. The first is that the person has an inevitably progressive and irreversible condition; the second is that their prognosis is less than six months. An issue raised in our evidence sessions is that there is a risk that a person with a mental disorder or disability will meet that definition if they are suffering physical symptoms that mean that they satisfy both parts of the test; a possible example could be a young woman suffering with severe malnutrition as a consequence of anorexia. With respect to the point that the hon. Member for Stroud made, I agree that anorexia on its own would not qualify, but the issue arises when there is a physical manifestation from that disorder such as severe malnutrition or even diabetes, which can co-occur, as we heard in the evidence sessions.
It is clear that that is not the intention of the hon. Member for Spen Valley or anyone on the Committee, as evidenced by the inclusion of subsection (3). I thank the hon. Member for making that point; it is much welcomed. However, in oral evidence, Chelsea Roff said that
“we have case law in the UK where people with anorexia are being found to be terminal. We have to take that reality into account.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 153, Q194.]
Before I get into amendment 11, which aims to address the issue, it is important to understand what clause 2(3) is trying to do. It reads as follows:
“For the avoidance of doubt, a person is not to be considered to be terminally ill by reason only of the person having one or both”
of a mental disorder or a disability; it refers to the relevant bits of law. As my hon. Friend the Member for East Wiltshire has set out, the words “for the avoidance of doubt” make it clear that this is a clarifying subsection that does not make any change to the rest of clause 2. It appears to be clarifying that mental disorders and disabilities alone will never qualify someone for assisted dying—I think we all concur with that—unless they also have a physical condition that meets the terminal illness test, namely that it is inevitably progressive and irreversible and that the person has a prognosis of less than six months.
This is where the problem lies. If someone has a physical condition arising from their mental illness, such as severe malnutrition resulting from anorexia, and if the physical condition meets the definition of a terminal illness, they will qualify. As the Royal College of Psychiatrists said in its position statement:
“The wording of the Bill could also be interpreted to include those whose sole underlying medical condition is a mental disorder. While anorexia nervosa, for example, does not itself meet the criteria for terminal illness as it is not an ‘inevitably progressive illness, disease or medical condition which cannot be reversed by treatment,’ its physical effects (for example, malnutrition) in severe cases could be deemed by some as a terminal physical illness, even though eating disorders are treatable conditions and recovery is possible even after decades of illness.”
To remedy the issue, amendment 11 would remove the words “For the avoidance of doubt”, to make this a legally effective clause, rather than just a clarifying one. That means that it is providing an additional safeguard to those with mental disorders and/or disabilities. It would also remove the word “only”, to ensure that a physical condition resulting from a mental disorder or a disability will not make a person eligible for assisted dying. The amendment is further bolstered by amendment 283, tabled by the hon. Member for York Central, which would make it clear that comorbidities arising from a mental disorder do not qualify a patient for an assisted death.
I thank the hon. Member for Spen Valley for tabling amendment 181 to try to address the issue, but I do not believe that would quite solve the problem, which is quite a tricky one. “For the avoidance of doubt” would still be there, as would “only”. The sentence beginning with “Nothing in this subsection” makes it crystal clear that if a condition meets the six-month condition and the rest of the definition, it will be considered a terminal illness. There is therefore no exclusion for physical symptoms manifesting from mental illness or disability, which I think is what we are all trying to get to.
In my view, the only amendment that would address the issue is amendment 11, tabled by my hon. Friend the Member for South Northamptonshire. It would remove both “For the avoidance of doubt” and “only”, and would therefore better ensure that a physical condition resulting from mental illness or a disability does not make a person eligible for assisted dying.
Naz Shah
Sorry, I mean amendment 11. Thank you, Mr Efford.
I think it will be helpful to spell out what the Bill currently says, and what it would say if amendment 11 were adopted. I will also set why the amendment would provide a much stronger safeguard than amendment 181, which was tabled by my hon. Friend the Member for Spen Valley.
Clause 2(3) states:
“For the avoidance of doubt, a person is not to be considered to be terminally ill by reason only”
—I stress the word “only”—
“of the person having one or both of—
(a) a mental disorder, within the meaning of the Mental Health 1983;
(b) a disability, within the meaning of section 6 of the Equality Act 2010.”
If amendment 11 is agreed to, clause 2(3) will read:
“A person is not to be considered to be terminally ill by reason of the person having one or both of—
(a) a mental disorder, within the meaning of the Mental Health 1983;
(b) a disability, within the meaning of section 6 of the Equality Act 2010.”
That may seem a very small change, but it is an extremely important one.
The Bill, as presented to Parliament on Second Reading, would allow someone to qualify for assisted dying if they had a mental health condition such as anorexia nervosa and a physical condition such as malnutrition. To put it with absolute bluntness, that means that somebody with anorexia nervosa could stop eating until they suffered so badly from malnutrition that two doctors prognose that the patient is likely to die within six months. That person, under the Bill, would then qualify for assisted dying.
Kim Leadbeater
This is a really important discussion and I am so glad that we are having it—some brilliant points have been made. As someone who has worked with people with anorexia, I am very aware of the sensitivities of the condition and the issues around it. Would my hon. Friend agree that, as part of this discussion, we have to consider the capacity assessment of people with eating disorders? It is a very serious mental health condition; it would require a lot for somebody with anorexia to pass the capacity threshold for making a decision of this magnitude. It is certainly the sort of instance where I would be very surprised if a doctor did not refer to an eating disorder specialist. Does my hon. Friend agree that we have to look at the condition and how the patient should be cared for holistically?
The Chair
Order. I remind hon. Members that there are a set of amendments in the next group about anorexia. Let us not go too far down this road.
Naz Shah
I absolutely agree with my hon. Friend that there need to be specialists—we will come to that debate later. Let me bring our debate back to the amendment we are discussing. I understand that the Bill is drafted so that people who suffer mental disorders, such as anorexia nervosa, cannot qualify for assisted death—when my hon. Friend the Member for Spen Valley sets that out, I have absolutely no reason to doubt it—but that is not enough to safeguard people with such disorders. As we know, people with anorexia can and have stopped eating until they suffer advanced malnutrition, which is a physical disorder. In some cases, that malnutrition becomes so advanced that doctors will prognose death within six months.
If we wish to protect people with anorexia and other eating disorders, we must rewrite the Bill. We must ensure that people who have those disorders, and who also have a physical disorder, cannot qualify for assisted dying. I must underline that this is not a hypothetical point or some clever objection that has been dreamed up without reference to the real world. It has actually happened—not once, but dozens of times in countries that have assisted dying.
Kim Leadbeater
My hon. Friend is making a powerful point. Does she agree that the reporting and data around assisted dying are fundamental? That is why it is important that, if the law is to change in this country, we get that absolutely right. What we propose in the Bill is closest to the laws in Australia, and in my understanding there have been no assisted deaths of people with anorexia in Australia. However, my hon. Friend makes a valid point about the accuracy of reporting; we do not know whether those examples were people with anorexia who happened to have cancer as well. We just do not know, and that is not good enough.
Naz Shah
I absolutely agree that if the Bill is to get through Parliament, it has to have those mechanisms and safeguards in place, but I am sure we will come to those later. If we do not know with any reasonable degree of accuracy how many cases there have been worldwide, we cannot say where the majority of such cases have occurred. When we are told that there have been zero assisted deaths of people with anorexia in Australia, I would err on the side of caution—another witness said that there were zero deaths involving coercion.
I understand that my hon. Friend’s amendment 181 also attempts to change clause 2, but the change would still allow people to qualify for an assisted death if they had a mental disorder alongside a physical disorder. I have no doubt that this stems from a compassionate desire not to exclude—for example, someone who has mild depression and a major physical illness—but its effect is to create a major risk for people suffering from both a mental health disorder that affects their eating and a physical disorder caused by not eating. To avoid that risk, the Bill must be much more tightly worded than it was when presented to the House on Second Reading, and it must be much more tightly worded than amendment 181 would make it.
We must make it much harder in the Bill for people to qualify for assisted death by way of having malnutrition caused by an eating disorder. It is a complex problem, and I believe no one amendment will solve it completely. I have submitted two amendments with the aim of making a contribution. Amendment 11 would also make a significant contribution to solving the problem, and I urge all Members to support it.
I turn to amendment 181, tabled by my hon. Friend the Member for Spen Valley. Although the Acts mentioned in clause 2 define mental illness and disability as being taken from the clear medical model, it is not clear if she is further suggesting that a new definition should be used—for instance, the social model. Someone could have a significant impairment under a social model of disability, and for the purposes of the Bill, not consider themselves to be a disabled person. Therefore, they could qualify for an assisted death, thus rendering the provision of no worth.
It is therefore unclear what my hon. Friend is similarly proposing with regard to mental illness. Amendment 11 is needed to provide assurance that if someone does have a mental illness, then it is tightly defined and would preclude them from being able to access an assisted suicide, in case the reason they are seeking it is the mental illness and not the terminal diagnosis. I will speak further on that later.
If amendment 181 was agreed to, the clause would read that a person is not to be considered terminally ill
“only because they are a person with a disability”.
There are two obvious problems with the amendment. First, the amendment removes references to the Equality Act 2010 and the Mental Health Act, which previously defined who did and did not have a disability or a mental health disorder, but having removed those definitions, it does not then define disability or mental disorder in the Bill. What definition will medical practitioners, and indeed applicants, use to determine who does or does not have a disability or mental disorder?
Kim Leadbeater
In terms of the removal of references to the Equality Act, I was not aware when the Bill was initially drafted that cancer is actually classed as a disability. Given the fact that in some countries 70% of assisted deaths are for cancer patients, it would seem ridiculous to exclude cancer patients from having the option of assisted death. I hope that goes some way towards explaining that point.
Kim Leadbeater
The concepts of a mental disorder and a disability are well understood, and those terms are well used. In the eyes of the law, we would not need to provide a definition of those in the Bill, but the removal of the reference that would include people with cancer is an important thing to do.
Danny Kruger
The fact that cancer is included in the Equality Act definition does expose a concern about the Bill. It suggests that there is a real connection there, which is of concern. I think the solution is to accept the amendment 11 and ensure that disabled people and those with mental health conditions would not be eligible for assisted dying, and then to introduce a further amendment—either now, as a manuscript amendment, or later—to exclude cancer from the definition. That is a tidying-up exercise that could be done in light of the point that the hon. Member for Spen Valley made about the reference in the Equality Act. The most important thing is that we tighten the clause to protect disabled people.
Terminally Ill Adults (End of Life) Bill (Thirteenth sitting)
Tuesday 25th February 2025
(9 months, 3 weeks ago)
Public Bill CommitteesTerminally Ill Adults (End of Life) Bill 2024-26 Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 25 February 2025 - (25 Feb 2025)
The Committee divided: - Ayes: 8 / Noes: 15 - Question accordingly negatived.
The Committee divided: - Ayes: 8 / Noes: 15 - Question accordingly negatived.
The Committee divided: - Ayes: 8 / Noes: 15 - Question accordingly negatived.
The Committee divided: - Ayes: 8 / Noes: 15 - Question accordingly negatived.
The Committee divided: - Ayes: 8 / Noes: 15 - Question accordingly negatived.
The Chair
Before we start, I remind colleagues about the use of the second person—that is, the word “you”. Can you please refrain from using “you” unless you are actually directly addressing me? As for interventions, they should be a vignette, not a disquisition—in other words, a sketch, not an oil painting. I will remind Members if their sketch becomes an oil painting.
Clause 2
Terminal illness
Amendment proposed (this day): 399, in clause 2, page 1, line 22, leave out “, disease or medical condition” and insert “or disease”.—(Danny Kruger.)
This amendment ensures that a terminal illness under the Bill can only be an illness or a disease and not a medical condition.
Question again proposed, That the amendment be made.
The Chair
I remind the Committee that with this we are discussing the following:
Amendment 400, in clause 2, page 2, line 1, leave out “, disease or medical condition” and insert “or disease”
This amendment is consequential on Amendment 399.
Amendment 401, in clause 2, page 2, line 5, leave out “, disease or medical condition” and insert “or disease”
This amendment is consequential on Amendment 399.
Amendment 11, in clause 2, page 2, line 7, leave out from beginning to first “of” in line 8 and insert—
“(3) A person is not to be considered to be terminally ill by reason”
This amendment amends clause 2 to say that a person cannot be considered terminally ill by reason of having mental illness or a disability.
Amendment 181, in clause 2, page 2, line 8, leave out from “ill” to end of line 10 and insert
“only because they are a person with a disability or mental disorder (or both).
Nothing in this subsection results in a person not being regarded as terminally ill for the purposes of this Act if (disregarding this subsection) the person meets the conditions in paragraphs (a) and (b) of subsection (1).”
This amendment clarifies that the purpose of subsection (3) is to emphasise that only having a disability or mental order does not make a person “terminally ill” and therefore eligible for assistance.
Amendment 283, in clause 2, page 2, line 10, at end insert
“or one or more comorbidities alongside a mental disorder within the meaning of the Mental Health Act 1983”.
This amendment would set out that a person who has a co-morbidity with one or both of a mental disorder or a disability is not considered terminally ill by virtue of those comorbidities alone.
Naz Shah (Bradford West) (Lab)
Before we adjourned, I was talking about the two obvious problems with amendment 181. The first is that it would remove references to the Equality Act 2010 and the Mental Health Act 1983, which previously defined who did or did not have a disability or mental disorder. The amendment would remove those definitions, and the Bill would not define disability or mental disorder. What definition would medical practitioners, and indeed applicants, use to determine who does and does not have a disability or mental health disorder?
I appreciate that, as my hon. Friend the Member for Spen Valley explained, that was done on the basis of advice she took to remove the references to the Equality Act because people with cancer could also declare themselves to be disabled people. However, that leaves a real opening, which weakens the clause even further. I cannot understand why we would remove one clear definition but not provide a replacement. That is a serious concern.
However, there is a bigger problem with the clause as it would be changed by my hon. Friend’s amendment. In referring to someone who could not be disqualified from assisted dying, the clause would still use the word “only”—again, I emphasise the word “only”. That leaves the door open for individuals with mental health disorders or disabled people to qualify for an assisted death based on the physical consequences of their condition. If the goal is to prevent people with mental illness or disabled people from qualifying, this amendment fails to do that. It weakens, rather than strengthens, the Bill’s safeguards.
As we heard in oral evidence, there are now 60 documented cases of individuals with eating disorders who have died by assisted death internationally.
Lewis Atkinson (Sunderland Central) (Lab)
Does my hon. Friend accept that nearly all those cases were in jurisdictions whose schemes bear no resemblance to the one proposed in the Bill?
Naz Shah
I accept that the majority of those 60 cases are in such jurisdictions, but to me it does not matter whether it is the majority or one—one death is too many, as I am sure my hon. Friend will agree. In Oregon, the evidence was that it was two, but it is also important to reflect on the fact that Oregon does not record these things. There is no record of the people who had anorexia—by and large, it is women—and who felt that they fit the criteria for assisted death, or that they were on a trajectory to fit it, because they had decided not to eat. So we cannot exactly rely on the two cases that have been found—and those were found only because of the research that was carried out. That does not quite satisfy the question.
Sarah Olney (Richmond Park) (LD)
Does the hon. Lady agree that it really does not matter what happens in other jurisdictions? The question is, does this legislation prevent people who are currently suffering from anorexia from seeking an assisted death or not?
Naz Shah
I completely agree with the hon. Member.
Coming back to the physicians who justified eligibility by citing the physical complications of anorexia, not just the mental disorder itself, we know that in all 60 of the cases that have been cited, the person did not have a terminal illness other than the one that was caused by anorexia, because that then fit the definition. Under the Bill, the same could happen here. I say in response to the hon. Member for Richmond Park that eating disorders or substance use disorders could still qualify if a doctor determines that the resulting physical deterioration meets the criteria for terminal illness. I will speak to anorexia in much more detail when we debate a further amendment that I have tabled.
Amendment 181 would also remove references to the Equality Act and the Mental Health Act, and the Bill would not define disability or mental disorder. That raises serious concerns, so I will not support the amendment. I encourage Committee members to strengthen the Bill in this regard and not weaken it. The Acts define mental illness and disability as taking a clear medical model, and again it is not clear whether my hon. Friend the Member for Spen Valley is further suggesting that a new definition should be used—but I am going over ground that I have already been over.
Daniel Francis (Bexleyheath and Crayford) (Lab)
The amendments before us have left me in a significant quandary, as some Members are aware. I am concerned that while their proposers are genuinely seeking to improve the Bill, legal loopholes may remain.
Prior to Second Reading, the Equality and Human Rights Commission produced a briefing note on the Bill. It included a section relating specifically to discrimination and equality considerations, which stated:
“It may also particularly impact disabled people. We recognise that this bill is focused on assisted dying for adults who are terminally ill, and does not propose access to assisted dying on the basis of disability or chronic conditions. However, there is not always a clear line between terminal illness and disability. Disabled people can also suffer from terminal illness, and illness may itself amount to a disability. Parliament should note that the exclusion of disability as a standalone criterion for accessing assisted dying does not mean that the rights of, and protections for, disabled people do not need to be considered in relation to this bill.”
I note that amendment 181, tabled by my hon. Friend the Member for Spen Valley, seeks to clarify these matters, but I remain concerned that, with its reference to
“only because they are a person with a disability”,
it would retain the ambiguity that she is seeking to remove. I understand the legal advice that she has received on this matter. My view is that although the amendment would remove the reference to the Equality Act, that Act still sets out that disability is one of the specified protected characteristics. Paragraph A9 of the Government’s guidance on the Equality Act reads:
“The Act states that a person who has cancer, HIV infection or multiple sclerosis (MS) is a disabled person. This means that the person is protected by the Act effectively from the point of diagnosis.”
I remain concerned about this point. I have previously raised my concerns about the language used on Second Reading and, if I had spoken then, I would have raised this point. We have heard throughout the Bill’s passage that being a disabled person does not make someone eligible for assisted dying, but I have just diagnosed three disabilities in the Equality Act that may or may not be eligible under this Bill.
Danny Kruger (East Wiltshire) (Con)
The hon. Gentleman is making a very important point, and he picks up the observation by the hon. Member for Bradford West that there is a link, through the Equality Act, with disability. It is absolutely right that we address that. Does he agree that the way to do so is not to accept amendment 181 tabled by the hon. Member for Spen Valley, which would retain the dangerous words “only” and “for the avoidance of doubt”, but to accept amendment 11, which would exclude those words and ensure that someone could not get an assisted death by reason of disability or mental illness? Because of that concern, perhaps we need to table a further amendment to exclude the Equality Act from the operation of this clause, and I await the Chair’s ruling on whether that is possible at this stage. Amendment 181 does not refer to the Equality Act, although the Bill does, so we should follow that point. Rather than accepting that amendment, which would not move us forward, we should accept amendment 11. I hope that that is clear and that it might satisfy the hon. Gentleman’s concern.
Daniel Francis
I will return to that. I understand what amendment 11 seeks to do, but I think we should have a hybrid, because I do not think either amendment would completely achieve what we want. I will seek the Minister’s advice in due course. I understand the legal advice to my hon. Friend the Member for Spen Valley on this matter, and I understand that all the amendments have been tabled in good faith, but I am concerned about the loopholes that could remain.
We heard on Second Reading that assisted dying will not be available to disabled people, but let us imagine an individual who does not consider themselves to be disabled. If they were diagnosed with cancer tomorrow, our current legislation states that they would be disabled from the point of diagnosis. They could live with that cancer and receive treatment for a considerable time, while continuing to have no other disability. When they receive a six-month prognosis, they would be eligible for assisted dying due to the same disability they have had for a very considerable time, and it would remain the only disability they have had in their entire life. I remain concerned that my hon. Friend’s amendment still talks about disability, potentially leaving that loophole.
Kim Leadbeater (Spen Valley) (Lab)
My hon. Friend makes an interesting point, but the purpose of the Bill is that a person with a terminal cancer diagnosis and six months left to live would have the choice of assisted death. As we have heard, they might have seen the suffering of relatives with a similar cancer, and they might have seen what their death looked like. I understand that people might disagree, but that is the purpose of the Bill.
Daniel Francis
I hear that point but, looking at my postbag, the people who berate me for not supporting the Bill often talk about their loved ones with motor neurone disease or Parkinson’s, which I understand from oral evidence will be exempt. We need to make it clear which disabilities and conditions will be eligible, and I am not sure that the amendments before the Committee nail it down. I am concerned that the wording would lead to potential loopholes and legal challenges.
We should still be concerned about legal review of the Bill, based on indirect disability discrimination. The Equality Act says that indirect discrimination happens when a rule, a policy or even a practice that applies to everyone disadvantages people with a particular disability, compared with people who do not have that disability, where that cannot be shown to be justified as being intended to meet a legitimate objective in a fair, balanced and reasonable way.
If we accepted this amendment to allow the inclusion of cancer and some other disabilities set out in the Equality Act, I believe it would be argued in due course that other disabilities meet the criteria for assisted dying and, despite the promises made to this Committee and to the House in good faith, the loopholes would allow the criteria to be widened.
Other amendments in this group retain the reference to the Equality Act 2010, which could equally result in legal challenges down the line, for the reasons my hon. Friend the Member for Spen Valley outlined this morning. I am not deliberately being difficult, but I am not sure that any of the amendments would completely achieve what they seek to achieve.
I await the Minister’s view on the matter but, as things stand, I am concerned that we will take the clause back to the House without completely satisfying Members’ aims. By allowing those with cancer to seek assisted dying, there could be a loosening of the rules for other disabilities. I fear there could be manuscript amendments on this matter, but I await the Government’s view on the robustness of these amendments if they were to be accepted.
Lewis Atkinson
I want to come back to the Bill as drafted. The key factor in clause 2, for me, is the focus on terminality. That is what determines eligibility: that death is reasonably expected within six months. The clauses that we are discussing, subject to amendment, merely clarify—rightly, because this is important, and I too will wait to hear the Government’s guidance—that solely having a disability or a mental disorder does not in itself provoke eligibility. I fear that we are overcomplicating matters; the focus on terminality is in the name of the Bill. It is the Terminally Ill Adults (End of Life) Bill, and that is what we are focusing on today. I urge Members to think about that point when they consider the amendments, including amendment 181 from my hon. Friend the Member for Spen Valley.
Dr Simon Opher (Stroud) (Lab)
I would like to make a short comment. It is very important that the Committee does not get too hung up on anorexia, because the Bill is very clear about what is excluded. Deprivation of nutrition is always reversible. Someone who is anorexic and about to die would go into multi-organ failure and be unconscious and unable to give any sort of consent. Before that, the nutritional deprivation is reversible and therefore not covered under the Bill.
Danny Kruger
I just wanted the hon. Gentleman to comment on the reality in our NHS at the moment that people are described as terminally ill with anorexia. They are given the label of being terminally ill and put on palliative care pathways because it is assumed that their condition is not reversible. Doctors today, in this country, are concluding that people with eating disorders are going to die and are treating them accordingly. Is he aware of that, and how does it affect his comments?
Dr Opher
I am not aware of that. I believe that this is always reversible until a person goes into the absolute terminal stage of multi-organ failure. Before that, we can reverse nutritional deprivation. I do not accept that point, and I think it is important that we look at the Bill in all its detail. I think it has enough safeguards to exclude someone with anorexia.
The Chair
I have received a manuscript amendment from the hon. Member for East Wiltshire that he wishes to move. As the hon. Gentleman knows, a manuscript amendment requires a very high bar and exceptional circumstances. I do not believe that exceptional circumstances are present, and he will be aware that further amendments can be proposed to the clause for consideration on Report. That is my decision on the matter.
The Minister for Care (Stephen Kinnock)
It is a pleasure to serve under your chairship, Mr Dowd. Although it is for Parliament to progress any Bill, the Government have a responsibility to make sure that legislation on the statute book is effective and enforceable. For that reason, the Government have worked with my hon. Friend the Member for Spen Valley; where changes have been agreed mutually between her and the Government, I will offer a technical, factual explanation of the rationale for those amendments. That applies to amendment 181 in this group.
This group of amendments is linked to how the Bill’s definition of a terminal illness applies to those with a mental disorder or disability. Amendments 399 to 401 would remove the term “medical condition” from the Bill’s definition of a terminal illness, so that only those with an inevitably progressive illness or disease would be able to request to end their life, rather than, as under the current drafting, those with a “disease or medical condition”.
The amendments could narrow the scope of those who may access assisted dying services. However, clinical advice suggests that the use of the terms has changed over time, may not be used consistently and remains debated in both medical and lay circumstances. Removing the term “medical condition” may lead to disputes or protracted debates about whether a particular condition is or is not a defined disease or illness, despite there being medical consensus around whether it will lead to death within six months.
Danny Kruger
I am grateful for that clarification, but it rather concerns me. Can the Minister elucidate exactly which conditions might fall into the category of medical condition that would not be captured by “illness” or “disease”? Does he accept the point that I made in my speech—that the interpretation of the law by the court will be that the phrase expands the definition of a terminal illness beyond illness or disease, as it is in the current law? What are the new conditions that will be captured by the term?
Stephen Kinnock
What the hon. Member will have picked up throughout this debate, on every day that we have met, is that the Government are concerned about adding or taking away terminology that delivers clarity, stability and familiarity.
I have to say that I am quite torn on the hon. Member’s amendment 399, because I absolutely see where he is coming from. It is one of those situations in which my position as a Government Minister is made somewhat more complex by my personal view that his amendment is perfectly reasonable. My instinct—speaking personally as a Member of Parliament, rather than as a Government Minister—is that the remaining terms in the Bill, if we removed “medical condition”, would continue to cover the waterfront or spectrum of conditions. It is possible that this is a case in which there has been an overabundance of caution on the part of the Government. I am delivering the Government’s position, but I want the hon. Member to know that that will not necessarily determine how I vote if this amendment does go to a vote.
Danny Kruger
I was going to remind the Minister that he is, in his strange Jekyll and Hyde personality, speaking as a Minister but voting as a Member of Parliament, so if he has given the Government’s view that my amendment is not acceptable, but he personally thinks that it is, I hope that he will vote for it.
Stephen Kinnock
It is a well-made case; I am still reflecting on it, because of the somewhat complex nature of my role on this Committee, but I am inclined to support the hon. Member’s amendment.
Amendment 11 also seeks to amend clause 2(3). Our assessment of the effect of this amendment is that a person who has a mental disorder and/or a disability may not qualify under the Bill as terminally ill, even if they have an inevitably progressive illness and can be reasonably expected to die within six months. There might be concerns from the point of view of the European convention on human rights and the Equality Act if the amendment were passed as currently drafted, because its effect would be to exclude people from the provisions of the Bill if they had a disability or a mental disorder. That may not be the intention of the hon. Members who tabled the amendment.
I turn to amendment 181. In executing our duty to ensure that the legislation, if passed, is legally robust and workable, the Government have advised my hon. Friend the Member for Spen Valley in relation to the amendment. It clarifies that a person who seeks assistance to end their own life based only on a mental disorder or a disability, or both, would not be considered terminally ill for the purposes of the Bill. Such a person would therefore not be eligible to be provided with assistance to end their own life under the Bill. Someone who has a disability or a mental disorder, or both, and who also already meets all the criteria for terminal illness set out in the Bill would not be excluded by the amendment, as drafted. The amendment therefore brings important legal clarity to the Bill.
Amendment 283 sets out that a person who has one or more comorbidities, alongside a mental disorder within the meaning of the Mental Health Act 1983, would not be considered terminally ill by virtue of those comorbidities alone. The reality of modern healthcare is that many patients, not least those towards the end of life, will be dealing with several conditions or comorbidities. The term “comorbidity” in a clinical context can sometimes be used to distinguish the main problem that someone has experienced experiencing from additional but less serious problems, but it can also be used by those specialising in one or more other aspects of a patient’s care to distinguish their area of focus from other issues.
In the context of the Bill, the essential test is whether any morbidity, comorbidity or otherwise, meets the requirements in the Bill. Although it is unlikely that a terminal morbidity would be thought of as a comorbidity, it is not inconceivable that it might be, for the reasons that I have set out. The phrasing of the amendment, notably the term “alongside”, potentially increases that possibility. The effect might be that a condition that would otherwise be considered terminal would instead be considered a comorbidity alongside a mental disorder. The amendment would prevent a person with a mental disorder who would, but for the amendment, have been considered terminally ill from accessing assisted dying services under the Bill.
As I have said, the Government have taken a neutral position on the substantive policy questions relevant to how the law in this area could be changed. However, to ensure that the legislation works as intended, we have advised the sponsor in relation to amendment 181, to further clarify the Bill such that only having a disability and/or mental disorder does not make a person terminally ill and eligible for assistance in accordance with the Bill.
Jack Abbott (Ipswich) (Lab/Co-op)
Most of the discussion on amendment 181 has centred on the word “only”. Just to get clarification on this point, would someone with an eating disorder who was later diagnosed with a terminal illness still be able to access an assisted death, if that were required under the amendment?
Stephen Kinnock
My answer to that question is yes. My understanding is that so long as the terminally ill, six-month criteria are met, that person would qualify for assistance under the Bill.
Jack Abbott
Just to be absolutely clear for everyone in the room, and in case I was not specific enough, if that terminal illness is a result of the eating disorder, rather than, say, of that person also being diagnosed with a terminal illness such as cancer, would they be covered under amendment 181?
Stephen Kinnock
My understanding is that amendment 181 is clear that the qualification for accessing assisted dying has to be based on the definitions in the main body of the Bill. If passed by the Committee, the amendment will make it clear that an eating disorder does not qualify for access to that service. There has to be another, clear definition that does qualify under the terms set out in the main body of the Bill.
Kit Malthouse (North West Hampshire) (Con)
I just want to illustrate to the Committee that people with eating disorders, certainly as they come towards the end of their life, are already subject to quite assertive action by the state. For example, over the past few years, generally, where hospitals have detected that an individual is effectively trying to starve themselves to death, they have applied to the Court of Protection and got orders for forcible treatment. In that application, it is determined that that person does not have the mental capacity to make decisions about their own medical care.
I do not want the Committee to labour under the illusion that people with anorexia or other eating disorders are going to wander up and suddenly ask for an assisted death. If there has been a detection that they are trying to get themselves eligible by effectively causing organ failure by starvation, the system would have intervened well before then, effectively to force them to be treated.
Stephen Kinnock
The right hon. Member makes an excellent point. I think it goes back to our basic view that there are some amazing health professionals in our healthcare system who do fantastic work. Eating disorders are a truly tragic condition and, of course, there is all sorts of support in place. It is not always perfect or exactly how we would want it to be, but I think it would be a false move for the Committee to think that this is an either/or situation. This is a both/and situation. Of course it is not always perfect, but I think we should pay tribute to our amazing health professionals, who look after all sorts of people with all sorts of conditions, including eating disorders.
Dr Marie Tidball (Penistone and Stocksbridge) (Lab)
Does the Minister agree that the language of clause 2(1)(a)—
“cannot be reversed by treatment”—
is reassuring? Indeed, the written evidence from Professor Emily Jackson notes:
“Someone with a condition that is not inevitably progressive, or which could be reversed by treatment, would be ineligible under the Act.”
That covers the case raised by my hon. Friend the Member for Ipswich.
Stephen Kinnock
My hon. Friend makes an excellent point. She brings us back to the fundamental point made in the Bill, which is that it has to be “an inevitably progressive illness”. Eating disorders do not fall under that definition: that is very clear. I hope that that explanation and the observation that I have made on the other amendments are helpful to members of the Committee in their consideration.
Kim Leadbeater
I will keep my comments brief, because we have had a very thorough discussion today. I will first speak briefly to amendment 123, tabled by my hon. Friend the Member for Broxtowe. Amendment 123 would change “an inevitably” progressive disease to “a typically” progressive disease. [Interruption.] Is that the next grouping? Oh, I am peaking too soon—my apologies, Mr Dowd.
I will come back to my hon. Friend the Member for Broxtowe, but let me turn to amendments 399, 400 and 401, on the exclusion of “medical condition”, which the hon. Member for East Wiltshire submitted a few days ago, before the end of the recess. I looked at them over the weekend and was very interested to hear his reasoning for them today. This is the purpose of the Committee; I have listened carefully to what the hon. Gentleman has said, and he has made some valuable points. All along, I have taken the view that this legislation must not only be the strongest anywhere in the world, but be very clear in its intentions and leave no room for ambiguity regarding who is entitled to request assistance under its provisions.
I am very comfortable with the definition of terminal illness in the Bill, but across the world—I have done lots of research into this, as I know other colleagues have—some jurisdictions use the term “medical condition” or, actually, just the term “condition”, and others do not. Many in Australia do, but in New Zealand, for example, which has a similar law to what is being proposed here, “medical conditions” do not feature, nor do they in a number of states in America.
While I do not necessarily think that it would definitely be problematic to include the term “medical condition”, I appreciate the argument that the hon. Gentleman has made. We have to be as cautious as possible to ensure that the Bill achieves its purpose but does not create a lack of clarity. That point has been very well made.
The advice that I have received from officials is that, as the hon. Gentleman suggested, “medical condition” does not have a clear legal definition and could therefore be seen as imprecise. That does worry me. The purpose of the Bill is clear—it is in the title. It is to give choice to terminally ill adults at the end of life. They must have a clear, settled and informed wish, and be expected to die within six months, in circumstances that are inevitably progressive and cannot be reversed by treatment. The hon. Gentleman has, I believe, helped to make that even clearer, and I am grateful to him for doing so.
Naz Shah
My hon. Friend is making her points very clearly. The last words of amendment 181 are:
“Nothing in this subsection results in a person not being regarded as terminally ill for the purposes of this Act if (disregarding this subsection) the person meets the conditions in paragraphs (a) and (b) of subsection (1).”
Does that not demonstrate that the amendment does not change the test for terminal illness?
Kim Leadbeater
My apologies; I am speaking to amendments 399, 400 and 401. I will be happy to come back to that point at the appropriate time, but I first want to finish my comments on those amendments.
As I have said, the hon. Member for East Wiltshire has done a good job this morning of improving the clarity of the issue. That shows that the Committee is doing its job and working effectively. I am therefore open to supporting those amendments.
Danny Kruger
I am delighted to hear it. I am grateful to the hon. Lady and to other hon. Members who have indicated their sympathy for the amendment. I look forward to the Division and to the Minister’s decision.
May I follow up on a point made by the hon. Member for Bradford West? I do not know whether the hon. Member for Spen Valley would like to intervene to help me understand the point. Amendment 181 would redraft clause 3(2) to make it clear that a person does not qualify as terminally ill
“only because they are a person with a disability or mental disorder”.
It would add to clause 3(2) the following additional sentence:
“Nothing in this subsection results in a person not being regarded as terminally ill for the purposes of this Act if…the person meets the conditions in paragraphs (a) and (b)”.
Does the hon. Member for Spen Valley agree that that will essentially mean that the clause does nothing? It confirms the terms of eligibility set out earlier in the Bill, and confirms that a person would still be eligible to receive an assisted death if they had conditions that were a consequence of a mental disorder or a disability. If she feels like intervening on me, I would like her to help me understand what that additional sentence adds. To my mind, it negates the purpose of the clause.
Dr Tidball
I stand here as a disabled woman. Under the Bill, as a disabled woman, I would not —by reason only of being a disabled woman—be eligible to have access to assisted dying. The amendment clarifies that I would not be eligible only through being a woman who has a disability. However, if I develop a condition that means that I have a terminal illness, leaving me with only six months left to live, I would be permitted to have that choice. It is right, I think, that I should have that choice. As I said in my Second Reading speech, this is about giving people access to a good death and living a good death. This is about giving that choice, where they choose to make it, to disabled people, while building in sufficient safeguards so that this is not something pressed upon them—
The Chair
Order. I do not like to intervene when a debate is going on, but as I indicated earlier, Members’ interventions have to be just that: interventions, not mini-speeches or disquisitions. Can we please keep interventions short and precise?
Danny Kruger
I am grateful, Mr Dowd. I recognise the force of what the hon. Member for Penistone and Stocksbridge is saying. To be clear, the amendments that I am supporting would not deny disabled people any of the other rights that are being awarded in the Bill. She is absolutely right that a disabled person with a terminal illness would qualify just as much as someone who was not disabled. That is absolutely right.
The purpose of the amendment is to ensure that people whose illness is a direct consequence of a mental disorder in particular would not be eligible. The reference to disability is because of the confusion, which I expect the hon. Member for Spen Valley recognises in current law and guidance, about where the distinction between disability and terminal illness lies. That is our concern. The purpose of the amendment is to ensure that people would not be deemed as eligible for an assisted death in consequence of disability or mental illness. I know that is what the hon. Lady is trying to do with the amendment, and with the clause that it amends, so we are on the same page. Our concern is that, by including the words “For the avoidance of doubt” and the word “only”, we will be leaving quite a large loophole, through which, I am afraid to say, some vulnerable people might fall.
I look forward to the Division on the amendments. We have not been able to discuss them all in close detail, but I am grateful to Members for the debate that we have had.
Amendment 399 agreed to.
Juliet Campbell (Broxtowe) (Lab)
I beg to move amendment 123, in clause 2, page 1, line 23, leave out “an inevitably” and insert “a typically”.
This amendment changes the definition of what it is to be terminally ill from having an “inevitably” to a “typically” progressive illness, disease or medical condition that cannot be reversed by treatment.
The Chair
With this it will be convenient to discuss the following:
Amendment 9, in clause 2, page 1, line 24, after “reversed” insert
“or the progress controlled or substantially slowed”.
This amendment would mean that illness, disease or medical condition etc, the progress of which can be managed or controlled by treatment are not characterised as terminal illness.
Amendment 48, in clause 2, page 2, line 2, leave out
“can reasonably be expected within 6 months”
and insert
“is expected with reasonable certainty within 6 months, even if the person were to undergo all recommended treatment”.
Amendment 282, in clause 2, page 2, line 2, leave out
“reasonably be expected within 6 months”
and insert
“be expected with reasonable certainty within one month, even if the person were to undergo all recommended treatment.”
This amendment would restrict the scope of assisted dying to people who, with reasonable certainty, would die within one month, even if they were to undergo all recommended treatment.
Amendment 51, in clause 2, page 2, line 2, leave out from “expected” to end.
This amendment would remove the six-month time requirement for a person to be eligible to request assistance under the Act.
Amendment 234, in clause 2, page 2, line 2, leave out “within 6 months” and insert—
“(i) in the case of a neurodegenerative illness, disease, or medical condition, within 12 months; or
(ii) in the case of any other illness, disease, or medical condition, within 6 months.”
This amendment changes the definition of a terminal illness for the purposes of the Act to include neurodegenerative illnesses, diseases or medical conditions where a person’s death in consequence of such an illness can reasonably be expected within 12 months.
Amendment 10, in clause 2, page 2, line 6, at end insert
“, providing the treatment does not alter the overall prognosis of the condition.”
This amendment, which is linked to Amendment 9, would mean that illness, disease or medical condition etc, the progress of which can be managed or controlled by treatment are not characterised as terminal illness.
Amendment 402, in clause 2, page 2, line 6, at end insert—
“(2) A person who would not otherwise meet the requirements of subsection (1), shall not be considered to meet those requirements as a result of stopping eating or drinking.”
This amendment means that someone who is not terminally ill within the meaning of subsection (1) cannot bring themselves within that definition by stopping eating or drinking or both.
Juliet Campbell
The amendment would change the definition of what it is to be terminally ill, from having an “inevitably” to a “typically” progressive illness, disease or medical condition that cannot be reversed by treatment.
The limits of medicine, and where they manifest in our healthcare system, have been repeatedly discussed and have come up in oral and written evidence. The Bill’s supporters have frequently used the argument that our current medical care is limited to highlight the benefits of assisted dying, by stating that even with the best care available, not everyone can be prevented from experiencing significant suffering as their life comes to an end. However, such an understanding of the limits of medicine is not consistently applied in the Bill. The truth, as is repeatedly corroborated in the written evidence, is that in many cases we simply cannot reasonably know how long a person could survive.
Witnesses have explained that predicting whether someone is inevitably terminal is often not a certainty. Even when a disease is considered advanced or at the end stage, there are variables—such as an individual’s response to a treatment, access to care, new clinical trials, medical intervention, or a person’s overall resistance —that can influence the outcome. When practising medicine, doctors often use terms like prognosis, life expectancy, or expectation, rather than definitive statements on the degree of someone’s terminal prognosis. The variables in prognosis make the amendment necessary.
The term “typically” better acknowledges the limitations of the knowledge of medical practitioners. In written evidence, Dr Chris Paxton, a retired GP of 38 years, says:
“No doctor can accurately predict if a terminally ill patient has six months or more to live. I have seen many patients being told they have only months to live, continuing living many years after their ‘terminal’ diagnosis.”
The concept of a condition being “typically” terminal acknowledges that although a disease usually leads to death, there may be exceptions where individuals survive longer than expected, or even achieve remission.
The process of assisted dying must maintain honesty and transparency with patients who are seeking assisted death. A declaration of certainty is implied by using the word “inevitably”. In her written evidence, Dr Ariel Dempsey, who is currently studying end of life care, says:
“Physician prognostic estimates are variable, optimistic/pessimistic, uncertain, and more often than not, inaccurate. For example, a prognosis of 6 months is required for hospice eligibility in the U.S., yet it is not uncommon for hospice patients to live beyond six months, even without life-prolonging treatment.”
For individuals seeking assisted death, the use of the word “inevitably” can lead to an over-reliance and overconfidence in the judgment of their doctors. If someone believes without question that they will inevitably die within six months, an assisted death may seem like an obvious and minimally life-limiting choice. The problem is that a claim that someone’s death is imminent and inevitable within six months simply may not be true.
Not only does the use of the word “inevitable” risk embedding dishonesty in our law, but it risks doctors who agree to engage in assisted dying and end of life care becoming overburdened with the responsibility of proclaiming an individual’s prognosis. Having considered the circumstances that surround a person’s illness, a doctor can only give a prognosis that is typical and give a typical indication of their life expectancy.
Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)
Will the hon. Lady give way?
Juliet Campbell
I have almost finished, so I will carry on.
If we give doctors the essentially impossible task of proving that death will inevitability occur in six months, there is a risk of an individual being advised to stop treatment, to accelerate them artificially into a serious or terminal state or speed it up to ensure their eligibility. As medical intervention is so key in the prognosis of a seriously ill patient, it makes no sense to me to use language that is not consistent with real-life medical experiences or reasonably within the scope of medical diagnosis.
Tom Gordon (Harrogate and Knaresborough) (LD)
It is an honour to serve under your chairmanship, Mr Dowd. I speak in support of amendment 234, which is tabled in my name and seeks to ensure that people suffering from neurodegenerative conditions are not excluded from the dignity and autonomy that the Bill seeks to provide. The amendment would extend the eligibility period for those with neurodegenerative conditions from six months to 12 months—a simple yet crucial change that could alleviate needless suffering and ensure fairness in our approach to end of life care.
The intention of the amendment is to change the law to match that in five of the six Australian states. The wording mirrors that found in those jurisdictions. Conditions that would be affected by the change include motor neurone disease, Huntington’s disease, multiple system atrophy, progressive supranuclear palsy, Parkinson’s and many others. Although Alzheimer’s is a neuro-degenerative condition, those with Alzheimer’s would not be eligible for an assisted death should the amendment pass because they would not have the mental capacity.
Daniel Francis
Does the hon. Gentleman agree that those with early-stage dementia or Alzheimer’s could pass the mental capacity test in the Mental Capacity Act 2005?
Tom Gordon
They would need to come within the definition of a terminal illness. I will come that later in my speech.
We must recognise the reality of neurodegenerative diseases. There are other conditions where prognosis follows a clear trajectory. People with conditions such as MND and Parkinson’s experience a slow but relentless decline. Their suffering can be profound long before they meet the six-month prognosis requirement that is currently in the Bill.
Let us look at some real-life stories. Mary Kelly is a bright and sharp-witted woman from Middlesbrough. Diagnosed with Parkinson’s last year, Mary knows that she faces many years of deterioration. She said:
“It would make the world of difference to know that assisted dying was legal and available. I’d know if I’m not finding joy, I can end it peacefully. It would make the intervening years so much more peaceful, loving, and relaxed.”
Parkinson’s-related dementia affects a third of those with the condition. If Mary loses capacity before a doctor confirms her eligibility, she will be denied the very right that the Bill aims to uphold. If we do not amend the Bill, people like Mary will lose their autonomy precisely when they need it most.
We must also consider the experience of people like Phil Newby, who was diagnosed with MND a decade ago. Phil fought to challenge the UK’s ban on assisted dying, taking a case to the High Court in 2019. He is the last living person who took one of the court cases involving assisted dying. Phil knows that the uncertainty of prognosis leaves too many in limbo. He said:
“People with neurodegenerative diseases often suffer a cognitive decline in the later stages. Twelve months would give a much greater chance for a civilised death to those suffering from the most devastating illnesses.”
We must ensure that those voices are not ignored in this conversation.
Imagine a scenario in which someone with MND applies for an assisted death. They tell their friends, family and loved ones. They begin to make preparations, including signing the written declaration, but they cannot get approval until a doctor says they have six months left. They wait. Their condition gets worse. They suffer choking fits, have feeding tubes fitted, and experience a slow and cruel deterioration. Finally, they receive approval from the first doctor, but before they can get to a second doctor, they begin to lose capacity. They are still suffering. Their family know their clear and settled wish, but they have no chance of a second approval, and especially no chance of approval from a panel. They will be potentially consigned to a death of agony and pain, despite everyone knowing that it is not how they would like to die. Their family must watch on, helpless.
The loss of competency is one of the greatest fears for those with neurodegenerative conditions. The Bill currently states that a person must have full mental capacity at the time of their assisted death, which is an important safeguard. However, people who develop MND can have their decision making impaired, and around 50% experience some form of cognitive decline. In New Zealand, where there is a six-month limit, many people lose their decision-making capacity before they can proceed. By contrast, in Victoria in Australia, where there is a 12-month limit for neurodegenerative conditions, only 7% lose competency. If we do not amend the Bill, we risk condemning those people to a fate they fought to avoid.
We must also recognise the difficulty in predicting life expectancy for those with neurodegenerative conditions. Prognosis is not an exact science. I am fairly sure that everyone agrees on that—people have made those points repeatedly. The Court of Appeal has acknowledged that a six-month prognosis cannot be made with certainty for many terminal illnesses. That is one of the most difficult things that I have had to grasp as part of the Committee. To impose what could seem like an arbitrary threshold on those with unpredictable conditions is unfair and unnecessary.
Moreover, let us look at international examples. Many UK residents who have to travel to Switzerland for an assisted death do not have six months or less to live. If we end up with a six-month limit, we will still see people having to travel to Switzerland or other jurisdictions to ensure that they have access to an assisted death. I worry how people in this country would feel about that —particularly those families who might wish to accompany their loved ones on that journey, with the legal consequences that could follow.
Recent polling shows that two thirds of Brits support an amendment that would allow people with neuro-degenerative diseases access to an assisted death. We know that 85% of people living with multiple system atrophy who gave their views in an MSA Trust survey support such a change in the law. This is not a minor or niche concern. Every year, motor neurone disease alone kills 2,200 people in the UK, which is six people per day. Some 45% of people living with MND say they would consider an assisted death if the law changed. It is not a hypothetical scenario: these are real people, making real choices about how they wish to live and die.
My amendment would not overload the system. Experience from overseas tells us that jurisdictions such as Victoria and other Australian states already have a 12-month system for neurodegenerative conditions, and it works. New Zealand, which maintains a six-month limit, has seen people unable to qualify, and is looking at what it can do to ensure greater access. We must also listen to the written and oral evidence from expert witnesses. Professor Meredith Blake and Chloe Furst testified to the importance of a 12-month eligibility period, not just for fairness but for the practicality of allowing patients to navigate the process in time.
Everyone wants to see a Bill that is about dignity. If it is truly about that, we must ensure that it works for those who need it most. It is not about opening the floodgates or trying to expand the criteria. It is about ensuring equal access. From speaking to colleagues across the Committee, I know that a lot of thought and consideration has gone into this issue. With that in mind, I will not push the amendment to a vote, but it is important that the voices of people with neurodegenerative diseases are considered as part of the process.
Rachel Hopkins (Luton South and South Bedfordshire) (Lab)
It is a pleasure to speak under your chairship, Mr Dowd.
I rise in support of amendment 234. I acknowledge the point made by the hon. Member for Harrogate and Knaresborough about not pushing it to a Division, but it is important to hear why it would benefit the Bill if it was agreed to. It would allow a terminally ill person with a neurodegenerative illness, disease or condition who has fewer than 12 months left to live—rather than six—the right to choose an assisted death. I speak as a humanist, because I am very alive to many members of the public, and some MPs, wanting a wider scope of eligibility to cover intolerable suffering. In fact, some want no timescales, and an amendment has been tabled for that. I believe that my hon. Friend the Member for Spen Valley, who introduced the Bill, has had people speak to her and say the Bill needs to go further.
Like all of us, I want to make this a good Act that will have strong safeguards while allowing people choice at the end of life, and I want it to command the support of the House. I reflected on whether we need to have such a wide definition to cover intolerable suffering, and I thought that a change to 12 months for those with neurodegenerative diseases would be a good way to reflect the breadth of voices we have heard in debates on the Bill. It is an appropriate compromise. One of the things we have seen over the course of our Committee debates is the real pulling apart and consideration of what this legislation will mean in practice.
As the hon. Member for Harrogate and Knaresborough set out so well, a 12-month timescale for those with neurodegenerative diseases would mean that people could make decisions while they still have mental capacity. As he rightly said, their condition would so often see a cognitive decline before six months. The Motor Neurone Disease Association—another organisation that supports people living with terminal neurodegenerative diseases—highlighted problems with the six-month criteria and the inequity that arises.
Again, I reference the testimony of medical practitioners from Australia, where some states have eligibility criteria for assisted dying that includes an illness, disease or condition that is expected to cause death within 12 months. It is out there in practice, so it is not a new concept. Professor Meredith Blake said in oral evidence:
“Queensland legislation is different: it sets a 12-month period of expected death, and the reason for that approach was in response to feedback from people living with neurodegenerative disease that they felt that they were being put in a different position to people suffering from, or experiencing, other terminal illnesses.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 211, Q270.]
I will draw my remarks to a close, but there is a personal reason why it is important to me that we reflect on 12-month eligibility: the case of Diane Pretty. Diane Pretty was from Luton, albeit she lived in the neighbouring constituency, and some 25 years ago she was diagnosed with motor neurone disease. She tried to change the law then so that she could access assisted dying, such was the pain and suffering that she endured because of her terminal illness. What she said is fundamental and at the heart of what we are trying to do here, 25 years later:
“I want to have a quick death, without suffering, at home and surrounded by my family.”
In the end, Diane Pretty was not successful, and she died aged 43 on 11 May 2002. She did not have a choice. She could not choose the death she wanted. Much has been said about rushing the Bill, but that was over 20 years ago, so the debate has been going on for many years. That is why I speak in support of amendment 234, so that those with neurodegenerative terminal illnesses, whose death is reasonably expected within 12 months, can access assisted death.
Rebecca Paul (Reigate) (Con)
I will speak to amendments 9 and 10, which were tabled by my hon. Friend the Member for South Northamptonshire (Sarah Bool). Members will spot the trend: I have been speaking in favour of a lot of her amendments.
Amendments 9 and 10 would make sure the Bill does what it aims to do: ensure that assisted death is available only to those who are genuinely at the end of life. Under clause 2, a person is terminally ill if they have a prognosis of less than six months and if they have
“an inevitably progressive illness, disease or medical condition which cannot be reversed by treatment”.
That wording gives rise to a risk of unintended cases meeting eligibility criteria.
In Oregon, conditions such as anorexia, diabetes, arthritis, HIV/AIDS and hernias have all qualified for assisted death. That is partly because the Oregon law uses the language of “irreversible”, just as the Bill says
“cannot be reversed by treatment”.
Conditions like diabetes arguably cannot ever be “reversed”, which suggests something more akin to “cured”; they can only be managed. The definition of terminal illness is now broader than it was ever intended to be.
Tom Gordon
Prior to being elected to Parliament, I worked for a type 1 diabetes charity—I feel like I have been saying that a lot recently. When we talk about diabetes, we often do not consider the fact that there are different types, including type 1, type 2 and gestational. They are not all akin, or the same. Furthermore, the NHS in its own language has referred to it as “a lifelong condition”, rather than a disease or anything that is terminal. How would the hon. Lady reflect on that?
Rebecca Paul
I thank the hon. Member for that thoughtful intervention, and I completely concede that it is not entirely clear, and there are different sources that describe it differently, which, for a non-medical person like myself, makes it difficult. There are certain websites, including NHS England, that may reference it as “progressive”, but equally I am sure that there are other sources that do not describe it in the same way. The hon. Member for Harrogate and Knaresborough makes a really good point, and he will see that I quite often talk about things arguably being the case; I am not saying that it definitely is—I am just highlighting that there is a risk, because if people disagree on whether it is progressive, that is when we have an issue. I see this as an opportunity to tighten up any of that potential risk.
I would say the ordinary person on the street would not expect diabetes to ever fall within the definition of a terminal illness, yet there is a risk that it could do, for the reasons I have explained. That means that the drafting of clause 2 is not quite tight enough in my view.
Kim Leadbeater
Just before the hon. Lady moves on, we may actually have come to a very sensible position based on the other amendments we have been discussing—amendments 399 to 401. I have done a little bit of googling, and diabetes generally is referred to as a “condition”. It might be referred to in other ways as well, but maybe that would be another reason for us all to support amendments 399 to 401.
Rebecca Paul
I thank the hon. Lady for that extremely good news. That would definitely be helpful and provide some reassurance.
Amendments 9 and 10 are essential to ensure that those people who are never intended to eligible for assisted dying under this Bill are kept outside of it. Amendment 9 seeks to ensure that it is not just illnesses that can be reversed by treatment, but illnesses where the progress can be controlled or substantially slowed by treatment, that are ineligible—diabetes being the classic case, which can be slowed and controlled by treatment. Amendment 10 further bolsters that by ensuring that treatments that improve prognosis are not disregarded under clause 2(1)(a).
The problem that we have with clause 2 in its current form is that it fails to distinguish between those who are truly at the end of their life and those who only become terminal if they do not access treatment. There is no requirement for a person to be receiving medical care when their prognosis is assessed, which means that many manageable but irreversible conditions—like diabetes, potentially, and chronic kidney disease—could qualify as terminal if treatment is stopped. Let us take the example of someone with type 1 diabetes, like my hon. Friend the Member for South Northamptonshire (Sarah Bool), who tabled these amendments. If she were to stop taking her insulin, she might meet the criteria for terminal illness under the Bill and qualify for an assisted death—I mean, I certainly hope she would not. Without treatment, type 1 diabetes could arguably be an inevitably progressive and irreversible condition that would result in death within weeks or months.
Dr Opher
There is nothing inevitable about a diabetic getting worse; they just need to take the right treatment, so I would say that “inevitable” is a key word. I respect what the hon. Lady is saying about the amendments, and they do have some value, but I do think it is covered by the current language—
“inevitably progressive…disease…which cannot be reversed.”
I think “inevitable” and “cannot be reversed” are enough of a safeguard to make this a good clause.
Rebecca Paul
I know the hon. Member has a huge amount of experience on this matter given his career, so I thank him for that contribution.
It must not be forgotten that it is the nature of such illnesses for there to be periods of unwellness, when people are at their lowest ebb, and it is our job to protect them from something that could sound appealing at that moment in time. The crux of this issue is that—subject to the point that the hon. Member for Spen Valley made about the improvements that we may now see following the amendments that we have just discussed—the Bill makes no distinction between a condition that is inevitably fatal and one that could be substantially slowed with treatment.
Dr Shastri-Hurst
My hon. Friend is making a valid argument, but I want to pick up the point made by the hon. Member for Stroud. He talked about illnesses that are inevitably progressive and cannot be reversed by treatment. For type 1 diabetes—I think that is what my hon. Friend the Member for South Northamptonshire (Sarah Bool) is addressing, as opposed to other forms of diabetes—a person either has insulin or does not.
The Chair
Order. Interventions should be pretty short, and Members really should be asking a question of the Member who has the floor, not making a mini-statement. Will they stick to that, please?
Dr Shastri-Hurst
Forgive me, Chair. I will come to the point. If the person does not have insulin, the diabetes could be treated by administering it. Does my hon. Friend accept that, in those circumstances, it would fall within this clause?
Rebecca Paul
I thank my hon. Friend—another doctor. I would suggest that diabetes cannot be reversed, but can be managed with treatment. All I am trying to do is make sure that that piece is picked up. I think we all agree that we would not expect diabetes to fall within the terminal illness diagnosis.
No fewer than 15 clinicians and medical researchers mentioned diabetes in written evidence. Other conditions are mentioned too. Two consultant physicians—Rosemarie Anthony-Pillai and DP Whitehouse—say that those on medication for heart failure could qualify if they stopped taking their medication. Dr David Randall, a consultant nephrologist at the Royal London Hospital, sets out in written evidence the example of a young man who has benefited from a kidney transplant but stopped his immunosuppression medication. That would lead to transplant rejection and, likely, death within a few months. Would he qualify as terminally ill if we were not to agree to these amendments?
Lewis Atkinson
The examples that the hon. Lady gives of the refusal of life-preserving treatment—for example, stopping insulin—would inevitably lead to death, so why does she believe that anyone in such a situation would need to seek voluntary assisted dying?
Rebecca Paul
I am sharing the content of written evidence. People working in this arena—medical professionals and clinicians—have taken the time to submit written evidence, which suggests that they see a risk, so this is something that we need to think about. The hon. Gentleman could be right when he asks why someone would seek assisted death in that situation, but it is more about if someone technically qualifies. Obviously, we are still yet to get through the Bill, and there is lots for us to debate, but we want to ensure that people are not put on that pathway if they are not actually terminally ill and their condition can be managed. People could be in a low place, and we need to provide support. This comes back to my point about the balance of best interests. It is really difficult to set the right level, but we need to think about best interests and protect people at their lowest point.
In Oregon, conditions such as anorexia, diabetes, arthritis and hernias have qualified for assisted death, not because they are inherently fatal but because treatment was refused or was unaffordable. We also need to think about situations such as supply chain issues with certain treatments. Situations that we do not want to happen could arise, and we need to think about what that means for this Bill.
Some lawyers and doctors in the US have advised patients on how to bypass the terminal illness criteria by refusing food and water until they become terminal—we have talked about that quite a lot today. There is some evidence of that happening. Cody Sontag, an Oregon woman with early-stage dementia, had few symptoms and was not eligible for assisted death, but after she refused food and water for a few days, her doctor ruled that she met the six-month prognosis requirement.
It is important that we carefully consider young women suffering with eating disorders, but I appreciate we have spoken about that group a lot today, so I will be brief. In Chelsea Roff’s evidence, she set out that at least 60 people around the world have been euthanised or assisted in suicide where anorexia nervosa has been listed by name as a terminal condition. In 100% of the cases, the people were women, a third were between the ages of 18 and 30, and two thirds were under the age of 40. Roff said,
“I have to emphasise that these were young women who did not have failing organs and did not have comorbid terminal conditions…they had decades of life ahead of them.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 139, Q175.]
UK courts have already ruled that treatment can be withdrawn from young women with anorexia, acknowledging that the likely result will be their death, after doctors framed their condition as terminal or untreatable. These examples powerfully demonstrate why it is vital these amendments are accepted, so that these conditions do not lead to a person qualifying for assisted death, if they can be managed sufficiently with treatment. In oral evidence, Dr Miro Griffiths asked us,
“What constitutes six months left to live, particularly if you are engaging with technological devices, medical assistance and so on? For example, I have a progressive condition that continuously makes me weaker and has respiratory complications and so on. If I remove the ventilator that I use at night, if I remove my other medical devices and if I stop my engagement with therapeutic services, does that constitute me having a terminal illness, because my rapid acceleration towards death becomes more evident?”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 142-143, Q179.]
In written evidence, Pathfinders Neuromuscular Alliance warned that for those with conditions like muscular dystrophy, access to treatment is essential. It said,
“It would not be unreasonable therefore to suggest an individual with neuromuscular respiratory failure could die within six months—and yet they might also live 20 to 30 additional years in this state.”
In written evidence, a group of leading physicians and researchers, including experts from John Hopkins University and the Royal College of Psychiatrists said,
“The Bill’s definition of terminal may not adequately distinguish between a condition that is inevitably fatal and one that only becomes terminal without adequate care.”
They added,
“Under this Bill, patients with incurable but treatable conditions could become terminal if they are unable to access timely treatment or choose to forego life-sustaining care.”
It is therefore vital that the definition of terminal illness is tightened to avoid unintended consequences. These amendments would ensure that the Bill applies only to those who are generally at the end of life, without prospect of recovery. I urge the Committee to give consideration to accepting them.
Naz Shah
First, I will speak to amendments 9 and 10, then to amendment 234, and then to my own amendments 48 and 402. I hope it is in order to note that the hon. Member for South Northamptonshire (Sarah Bool), as the hon. Member for Reigate already mentioned, is a type 1 diabetes sufferer. Amendments 9 and 10 both concern matters of which she has a personal understanding.
Amendment 9 would mean that an illness, disease or medical condition, the progress of which can be managed or controlled by treatment, would not be characterised as a terminal illness. The amendment provides that instead of saying that the illness cannot be “reversed” by treatment, the Bill should say that its progress cannot be “controlled or substantially slowed”. The amendment is clearly a most important one. It seeks to prevent illnesses that can, in fact, be treated effectively from being classified as terminal illnesses.
The amendment would work to mitigate two very serious risks posed by the Bill. First, it would make it more difficult for someone who, for whatever reason, wished for an assisted death to qualify for that process by failing to follow a reasonable course of treatment. I do not say that the amendment would make it impossible for anyone not to do so, but it is an important safeguard. It would also provide a safeguard against the expansion of those conditions that would qualify people for assisted death.
My hon. Friend the Member for Spen Valley and members of the Committee have repeatedly praised the Oregon law, but we surely do not want to follow that example in every way, since we know that in Oregon, sufferers of anorexia have been able to access assisted dying. Again, I do not say that the amendment would make it impossible to expand the list of conditions, but it would make it harder. My hon. Friend has said repeatedly that she wants the Bill to have the strongest safeguards of any assisted dying law in the world, so I hope that she will join me in voting for amendment 9.
Naz Shah
I agree very strongly with the sentiments expressed by my hon. Friends the Members for Spen Valley and for Penistone and Stocksbridge, and I hope that the Committee can later return to the state of palliative care in this country.
I underline that the matter of the six-month prognosis was not some minor detail on Second Reading; rather, it was a central plank of the arguments made by those who said that we should pass the Bill because its safeguards were the toughest of any assisted dying law in the world. It is less than three months since my hon. Friends spoke those words, and yet we are already discussing an amendment that would remove the six-month prognosis.
Kim Leadbeater
We need to be fair to the hon. Member for Harrogate and Knaresborough, who has said that he will not press the amendment to a Division. Indeed, it would not be something that I would support if he did do so, for the reasons that my hon. Friend has stated. I also think that we need to give him credit for ensuring that the voices of people with neurodegenerative conditions, such as MND, Parkinson’s and Huntingdon’s, are heard. They are an important part of this debate, whatever our views might be on the tightness that is needed in the Bill.
Naz Shah
I thank my hon. Friend, and my hon. Friend the Member for Penistone and Stocksbridge, for making it clear that they would not vote for the amendment. I also thank the hon. Member for Harrogate and Knaresborough for bringing forward an amendment that discusses those issues. However, whether it is withdrawn or not, it is an amendment that we are debating and talking to.
The hon. Member for Harrogate and Knaresborough, who tabled the amendment, no doubt feels very strongly that the conditions of patients with neurodegenerative diseases make a case for relaxing the six-month prognosis to 12. There may well be a good case for doing so, but we can only consider the case for extending the prognosis to 12 months because of the challenges created by neurodegenerative diseases if we have first considered that extremely complex subject.
We cannot say that the Committee has studied the difficult subject of neurodegenerative diseases and how they would affect the administration of the Bill. We have not heard from witnesses on the subject, and we have not been able to ask them questions. We did solicit evidence on whether neurodegenerative diseases would affect the ability to self-administer lethal drugs, but we have not had time to study the written evidence.
I appreciate that the hon. Member for Harrogate and Knaresborough is not going to press the amendment to a Division, which leaves some of what I wrote earlier obsolete. I appreciate the hon. Member’s efforts. We are sent here by our constituents to represent them to the best of our ability. I certainly try to do that, and I know my hon. Friend the Member for Spen Valley always tries to do that—I have no doubt that the hon. Member for Harrogate and Knaresborough and all others are trying to do that. We vow to represent our constituents, and had the amendment gone to a Division I would not have been able to support it, simply because we cannot make those difficult decisions without being properly informed. We cannot make up our minds to change the Bill because of a complex set of diseases.
Jack Abbott
Just as a point of clarification, I remember asking one of the witnesses at our oral evidence sessions about this very issue—Sir Nicholas Mostyn, an esteemed judge who has written and spoken about the issue extensively. We asked his views about neurodegenerative diseases and extending the time to 12 months, so it was something that we were aware of and discussed as a Committee. In fairness to the hon. Member for Harrogate and Knaresborough, it has not come completely out of the blue.
Naz Shah
I agree that we did hear that, but we did not hear from experts in the Bill, and at that point it was not discussed. While I acknowledge my hon. Friend’s point that we did speak to Sir Nicholas Mostyn, we did not have further evidence, and this measure was not in the Bill when we took evidence from those witnesses.
Tom Gordon
I find this a little bit baffling, because we had a comprehensive list of witnesses that we were able to circulate in advance. The format in which those oral evidence sessions were held was really helpful and informative. We were able to ask questions, and as the hon. Member for Ipswich mentioned, we were interacting with people and families. We heard from Pat, who gave oral evidence about his sister who had to go to Dignitas. Again, it was not just a small figure; a number of people brought this issue up. Could the hon. Member reflect on that?
Naz Shah
The crux for me is that at Second Reading, when the Bill was voted on, many Members cited that one of the central planks to that debate at the time was the six-month prognosis. The amendment would increase that to 12 months. As I have said, my concerns are that we are only three months on from that conversation and we are already trying to expand the Bill, which is why I would not support the amendment. I have said quite a bit on amendment 234, so I will leave it.
I will now speak to amendment 48, which I tabled. Under the current wording of the Bill, a person is terminally ill if their death
“can reasonably be expected within 6 months.”
My amendment would change that so that for a person to be considered terminally ill their death would have to be
“expected with reasonable certainty within 6 months, even if the person were to undergo all recommended treatment”.
One of the risks that confronts the Bill is that of misdiagnosis. That is not some remote possibility. Let me go into detail. As hon. Members know from the evidence brought before the Committee, prognosis is not a precise science. Even with physical illnesses, determining life expectancy is highly unreliable. Government data from the Department for Work and Pensions reveals that one in five people given six months to live are still alive after three years. A study spanning 16 years found that doctors wrongly predict how long terminally ill patients will survive in half of cases. Out of 6,495 patients who were predicted to die within six to 12 months, more than half—3,516, to be precise—lived longer than expected. If the Government themselves cannot accurately determine terminal illness for benefits, how can we rely on such predictions to justify ending lives?
Studies cited in written evidence submitted to the Committee have found that clinicians are routinely inconsistent and inaccurate in their prognostic assessments, often underestimating survival. Professor Katherine Sleeman, a palliative care specialist, underlined that point in her evidence to the Committee. Doctors face considerable difficulty in prognosing whether somebody is in the last six months of their life. Professor Sleeman cites studies based on large samples of patients for whom doctors prognosed life expectancy. The studies found that 47% of the patients whom they predicted to have six months to live in fact lived for longer than that—in some cases considerably longer.
I would argue that there is a danger in using the standard of prognosis currently in the Bill. The current research into doctors’ prognoses indicates that almost half of their estimates that a patient has six months to live are incorrect. We do not want people to choose assisted dying on the basis that they have only six months to live when a very high proportion of them will in fact live longer if they are not given assistance to die by taking a lethal drug or drugs.
My amendment would hold doctors to a higher standard of certainty. Under that measure, they would be explicitly held to prognosing that death would occur with “reasonable certainty” within six months, and that that would be true even if the patient underwent all recommended treatment.
Sean Woodcock (Banbury) (Lab)
I think we all accept that prognosis is quite difficult, but one reason why I think this is fundamentally important is that a member of my constituency Labour party was given a prognosis of 12 months in 2012. Last year, they were out delivering leaflets for me in the general election. That is why it is so important that we make sure we get this right. I am sure that my hon. Friend has examples of her own. Is that what is guiding her to press this amendment?
Naz Shah
It is absolutely what is guiding me. I am sure we all know people who were told that they had six months to live and have lived a lot longer. We have heard stories of people who were told that they had six months to live and lived beyond 20 years more. We have heard lots of tragic cases, for example in the world of Dr Jamilla Hussain, that would really benefit from the Bill’s being available to them. But equally, there are other families whose loved ones have survived—and not just survived, but thrived for years and years. In fact, a close friend of mine, who happens to be a constituent of my hon. Friend the Member for Spen Valley, was diagnosed not to live very long. It was an emotional time for her daughters. Eighteen and a half years later, she is still alive, well and thriving.
Naz Shah
I thank my hon. Friend for his intervention. Actually, there is nothing in the Bill that suggests that. We can only imagine and try to empathise as much as we possibly can with any person who has been given a diagnosis of six months to live. In that six-month process, they might not wait; as my hon. Friend, who is a doctor himself, has said, this is about autonomy. They might not wait until they get to a position where there is a lot of suffering; they might not wait to see those six months out. They might decide they do not want to take that risk, when actually they might have lived another 15 years, another year or another two years. That is the point of this amendment.
Kim Leadbeater
My hon. Friend is making a powerful speech and it is good to have this debate. May I ask her opinion on two things? One is that, as my hon. Friend the Member for Stroud has alluded to, the research around the world shows that between 30% and 40% of people who sign up for assisted death never actually do it, because they do get better or because the treatment makes their condition manageable—or because they have a death in a different way. What are her thoughts on that? The other thing to point out is the number of people who we know, sadly, are taking their own lives because they are terminally ill at the moment. I go back to the point that I make quite regularly: no one is monitoring that—
The Chair
Order. As I said before, these are interventions seeking clarification. They are not mini-speeches.
Kim Leadbeater
Just to clarify, my understanding is that it is between 600 and 700 people who take their own lives; it is suicide.
Naz Shah
If we take that number, then that 30% or 40% who do not take that decision is maybe a few hundred people. However, the truth from Professor Sleeman’s evidence is that we are talking about thousands of people who are misdiagnosed every single year. She was talking about 3,516 who lived longer than expected. Yes, I recognise and value my hon. Friend’s comment that 30% or 40% of people do not take up assisted dying, but—perhaps I will talk about this when I move on to the next amendment—there is also a risk. If we go back to the Bill promoter’s intention to make the wording tighter, then surely this is a safeguard that she would support, just to ensure that we are making it as tight as we possibly can.
Jake Richards (Rother Valley) (Lab)
Can my hon. Friend clarify for me what she means by “reasonable certainty”, and how that differs from the clause as drafted? Can she also explain why, in her amendments, normal language around the burden of proof, such as “on the balance of probabilities” or “beyond reasonable doubt” is not used?
Naz Shah
First, this is not an issue for a tribunal, where it would be on the balance of probabilities; it is not an issue for a court of law or a criminal court, where we would be using proof beyond reasonable doubt. What I am trying to demonstrate is that doctors, in those diagnoses where they do get it right, have much more certainty. It might be that people have six months to live because they have different types of cancer. I am certainly not a clinician or an oncologist, but I know from the evidence we have had and from speaking to people that some people’s diseases—the specialists know better—have a trajectory of plateauing out and then dropping right at the end and some have a jagged kind of decline. Some of those diseases can be predicted with much more clarity than others. On the surface of it, in September, it might be the case for somebody that that is within the time—as for one lady who was told that she would not have more than six months to live. She is the founder of the Music of Black Origin awards and I was with her last week. She was absolutely fighting; she was not supposed to make it to that day. It is for the medics to decide—it is not for me to decide—but I would like medics to have much more certainty than they currently do, so that we would not have 47% of cases being misdiagnosed. That is what I am trying to get to, but I thank my hon. Friend for his intervention.
I argue that there is still a danger of using the standard prognosis that is currently in the Bill. The current research into doctors’ prognoses indicates that about half of their estimates are incorrect. My amendment would hold doctors to a higher standard of certainty. Under the measure, they would be explicitly held to a prognosis that death would occur with reasonable certainty within six months, and that that would have to be true even if the patient underwent all recommended treatment.
To go back to my hon. Friend’s intervention, this amendment is about raising the bar for how our medics make decisions. I submit that it would be a stronger test than the one currently included in the Bill. My hon. Friend the Member for Spen Valley has frequently stated that she wishes to create a Bill with the toughest safeguards in the world. I keep coming back to that, because the whole purpose of speaking to all these amendments is to put in opportunities to try to strengthen the Bill. By their nature, all these amendments reflect hon. Members’ concerns. This amendment would tighten the prognostic standard required of doctors and would therefore contribute towards tightening the Bill’s safeguards. I hope that hon. Members support it.
Finally, I turn to amendment 402. I will repeat a lot about anorexia, but it is an important amendment. I have tabled it for a simple but extremely important purpose: to prevent people from qualifying for assisted dying by stopping eating and drinking to the degree that they develop severe malnutrition, such that a doctor would give them a prognosis of six months to live. It specifically aims to protect people with severe eating disorders, including anorexia nervosa, and would also protect people with a severe wish, as one of the psychiatrists who testified before the Committee put it, to “hasten death”. I hope that my hon. Friend the Member for Spen Valley, and all other Committee members, will support this amendment.
Let us make no mistake: the Bill, as currently drafted, has a horrible loophole that all of us should seek to close. We know that anorexia sufferers and other people with eating disorders can and do stop eating to the point where they are dying of malnutrition. We should not allow such people to qualify for assisted death. Unfortunately, that is not a hypothetical danger; it is happening.
We know from the evidence that the Committee has received that that has happened in other countries. A group of eight experts on eating disorders submitted written evidence TIAB54 to the Committee some weeks ago. The experts included Chelsea Roff, who has been referred to many times in this Committee, and who gave clear testimony before the Committee, as well as seven medical doctors from hospitals in the UK, the US and Canada.
I hope that all Committee members have read the evidence, but I would understand if they had not, because we have had nearly 400 pieces of evidence to go through and very little time to read it. It seems to me, however, that if we are trying to write the best possible Bill, with the strongest possible safeguards, we have to pay the written evidence of experts the attention that it deserves. In their written evidence, that group of experts said:
“Patients with severe eating disorders frequently experience profound psychological distress and may express a desire to die. While this may appear to reflect a clear and informed wish, it is often a symptom of their psychiatric condition, which is remediable with appropriate treatment.”
The experts found that at least 60 patients with eating disorders received assisted death in several jurisdictions worldwide, including the US, Canada, the Netherlands and Belgium. I stress the phrase “at least 60” because we cannot be entirely sure that that is the full total. It is sadly the case that some jurisdictions are much more painstaking and transparent in the data they publish on assisted death than others.
In itself, it is tragic that people died in that way, but two things surely make the fact even worse. There are certainly men with eating disorders, but this is a problem that disproportionately affects women and girls. We know that the incidence of anorexia nervosa is much higher among women than among men in every age group. That is tragic. In every case we know of where a person with an eating disorder received an assisted death, that person has been a woman. I say it again: we cannot allow the Bill, as currently written, to stand. The Labour Government was elected with a mandate to reduce violence against women and girls. We surely cannot pursue that goal while at the same time increasing the vulnerability of women and girls who have eating disorders. There is nothing in the Bill as it currently stands that would stop doctors signing off on assisted death for someone who had starved themselves into malnutrition.
The courts in England and Wales have already begun accepting that some people with anorexia have reached a terminal stage. In the Court of Protection case, The NHS Trust v. L & Others, which took place in 2012, a 29-year-old with severe anorexia was described in the ruling as follows:
“The prospects of her recovery overall approach zero…given that it is extremely unlikely that Ms L will recover from her anorexia…in best interests to move to palliative care if L…in terminal stage of her illness.”
The right hon. Member for North West Hampshire raised the Court of Protection. There are 10 cases where the Court of Protection has made rulings. Of them, only one case, in 2012, ruled that the young lady could be force-fed.
Kit Malthouse
My understanding is that it is the other way around. In all but one case, force-feeding was decided by the courts. In the case the hon. Lady is referring to, L, the court did wrestle over that particular issue and realised that, such was the advanced stage of the patient’s condition and the complexities of force-feeding, it could not quite bring itself to authorise it. My understanding is that in all bar one case force-feeding has been authorised.
Naz Shah
Actually, it was the other way around and I am happy to provide a reference to the right hon. Gentleman. Nine cases found lack of capacity, but still not in the best interest. One of the girls was 19 years old. The judge found that they lacked capacity to make decisions about their treatment. The question of whether they had the capacity to decide to end their life is completely different and not something we have asked judges to rule on before. The judge’s ruling clearly implied the capacity to refuse force-feeding even if it resulted in their death. I am happy to provide the references for that. It was against their best interest to force-feed them. Tragically, in nine of the 10 cases the judges accepted that that would inevitably lead to the deaths of those young girls.
My hon. Friend the Member for Spen Valley has repeatedly stressed that her Bill is modelled on the Death with Dignity law in Oregon.
The Chair
Order. With the greatest respect to Members, this is not a dialogue; this is a debate. This is not chit-chat. It is a very serious issue and interventions of that nature are not helpful.
Kim Leadbeater
On a point of order, Mr Dowd. If something is said that we know not to be correct, what should we do?
The Chair
That is ultimately a matter of opinion. If the hon. Lady wishes to ask the hon. Member for Bradford West a question and get clarity from her, that is fine, but this is becoming a dialogue. People cannot hear what is being said. I want the Committee to be run in an appropriate fashion. We have rules of debate in the House and I am trying to apply them. Otherwise, there lies perdition and chaos.
Naz Shah
I am happy to withdraw that comment, given the welcome intervention of my hon. Friend the Member for Spen Valley. When intervening on me in a previous sitting of the Committee, she stressed that most of the assisted deaths of people with eating disorders took place in the Netherlands and Belgium. The survey that Ms Roff and her colleagues carried out did find that the Netherlands and Belgium had more assisted deaths of people with eating disorders than Oregon, but it also found that Oregon itself had more than one such case. California and Colorado have also accepted people with eating disorders as subjects for assisted death. I remind hon. Members that, as I noted earlier, Oregon has a considerably smaller population than England and Wales. In 2023, the last year for which we have full data, Oregon had a population of just 4.25 million. By contrast, England and Wales had a population of 60.85 million—more than 14 times higher.
Perhaps it is the case that Oregon has had two assisted deaths for anorexia sufferers, as one witness told the Committee. In England and Wales, we have 14 times the population of Oregon. If it became legal for sufferers of advanced-stage anorexia to take their lives by assisted dying, we would almost certainly have more cases than Oregon.
Dr Opher
Does my hon. Friend not believe that an eating disorder is reversible? Under the Bill’s provisions, if someone has a condition that can be reversed by treatment, they would not be appropriate for assisted dying. Is she saying that eating disorders are not reversible?
Naz Shah
Absolutely not. That is not the point that I am making. Eating disorders are reversible, but it has been found that where this kind of legislation has been enacted, across the globe, somebody who has anorexia and decides not to eat then falls within the scope of assisted dying because it becomes a terminal illness.
Danny Kruger
I do not want to cut off the hon. Lady in full flow, but I want to echo her points. The hon. Member for Stroud has made his point before and we have had an exchange on it. There is quite a lot of research, to which I refer him, that shows how people in the UK, being treated by the NHS, are having diagnoses of terminal anorexia. It is happening. I refer him to Professor Agnes Ayton, the campaigner Hope Virgo and the eating disorders all-party parliamentary group in this place, which is looking at that. It seems bizarre to us, because of course someone can resume eating, but the fact is that anorexia is treated as a terminal illness in parts of the NHS today.
Dr Opher
Actually, there is a lot of debate about whether terminal states of eating disorders actually exist or not, so they cannot be said to be a real thing in that way. Some people in the profession think they certainly do not exist, so I would contest the point made by the hon. Member for East Wiltshire.
Naz Shah
I thank my hon. Friend for his intervention, but the truth of the matter is we have 10 cases that have gone to the Court of Protection. In nine of those 10 cases, judges ruled that the young people—women and girls, one was only 19—did have the capacity not to take treatment.
Kit Malthouse
Just to clarify, what I said earlier was slightly incorrect—I misread my briefing. While the hon. Lady may be right that the court decided not to proceed with force-feeding, a number of those applications were by the individual to stop the force-feeding. While the court decided that, on balance, that was the right thing to do, in all those cases since 2012 the individual was not found to have capacity to make decisions about their own condition; the decision was made by the court for them. That means that, under the terms of the Bill, they would not qualify. Some of those cases were quite complicated. A number of them, as I read it—
The Chair
To some extent, there is an issue here of repetition. Standing Order No. 42 gives me the power to stop potential repetition. I do not want to use it—I do not want to interfere with the debate—but I am afraid we are getting to the point of repetition. If I need to invoke Standing Order No. 42, I will.
Naz Shah
I thank the right hon. Member for his intervention, but my understanding is that the judge found that those individuals lacked capacity to make decisions about their treatment; whether they had the capacity to decide to end their life is a completely different test. I apologise in advance for repeating this, but it is not something that we have tested. They had the capacity to refuse. The judge ruled that they could not be force-fed. Tragically, in nine cases, while not force-feeding those young women would lead to their death, the judge insisted that force-feeding would not be in their best interests. That is what happened in those cases.
Kit Malthouse
I stand to be corrected, but my understanding is that in the seminal case that the hon. Lady is talking about, the case of The NHS Trust vs. L, the court decided not to force-feed L because the prognosis was that force-feeding would precipitate her death.
Naz Shah
I thank the right hon. Member for his intervention. I have talked about that case, and the court concluded:
“The prospects of her recovery overall approach zero… Given that it is extremely unlikely that Ms L will recover from her anorexia it is…in her best interests to”
move to palliative care, as it was considered a terminal illness. In some ways, that makes my point for me: she was diagnosed as terminally ill. The purpose of the amendment is to close that loophole. The majority of these cases are young girls and young women. I do not want them to get to a stage where they qualify under the Bill because they have a terminal illness due to refusing food, because that can be treated. That is the point that I am trying to make.
Let us say that only one or two people with anorexia have an assisted death if the Bill becomes law without my amendment. I hope that every member of the Committee would agree that even one such death would be unacceptable. Some might say, “Oh, but we must not make the perfect the enemy of the good.” That has been said in the debate, or sentiments have been expressed that reflect that sentence.
That is a good argument to make when we are trying to persuade our teenagers to finish their homework for school and so on. It does not wash for me when we are trying to create a Bill with the strongest possible safeguards for vulnerable adults, and it is too close to the arguments made in favour of brutal actions across the globe. We say things like, “To make an omelette, you’ve got to crack a few eggs.” If we want to make the Bill the best it can be, we cannot use such arguments. Perfection is not the enemy of the good—perfection is absolutely what we should be pursuing in this Committee.
Reference was made to one of the witnesses who gave oral evidence. I remember being aghast at the idea that these two people who died in Oregon were somehow a red herring and that there had been only two. It was really disappointing, and I was extremely angry at that comment. That is not something we should be doing or the standard we should be setting. We cannot be saying that.
There is nothing good about letting people who have sadly reached an advanced state of malnutrition be given assisted dying. Surely we can agree on that. If this Bill does not include my safeguard, it will do two things. First, it will increase the dangers of anorexia. People already develop anorexia to such a degree that they perish of malnutrition. Allowing such people to apply for assisted dying will mean that more severe anorexics die. If we do not adopt my safeguard, we run the further risk that those who are not anorexic, but wish to hasten death, stop eating in order to qualify for an assisted death. Both of those would be truly malign. I would hope all Members of the Committee will accept my amendment to protect those who would otherwise be at risk of starving themselves to an assisted death.
I also want to bring to the Committee’s attention a public letter that has been released this afternoon by nearly 40 individuals who work in the field of eating disorders. They have said, on the amendment to which I am speaking:
“This amendment states that mental illness alone does not qualify as a terminal illness, but as the legal text (“Nothing in this subsection…”) makes clear it has no effect beyond restating that the condition must meet the requirements of clause 2(1). If a doctor holds that a mental illness meets the test in clause 2(1) for terminal illness, this amendment will do nothing to prevent that.”
They further say:
“Eating disorders are treatable. They are life-threatening when left untreated or poorly treated, but this risk is preventable, and deaths from eating disorders are not inevitable. As campaigners, clinicians, charities, and organisations working with those affected, we urge the committee to take these concerns seriously and ensure this bill does not put people with eating disorders at risk of premature death under the guise of assisted dying.”
On my amendment 402, they say:
“Amendment 402: Explicitly states that a person cannot be deemed terminally ill because they have stopped eating or drinking.”
On amendment 48, they say:
“Amendment 48: Clarifies that a person is only considered terminally ill if their death is reasonably certain within six months, even with all recommended treatment.”
They are supporting those amendments, 9, 10, 48, 402 and 11. On that note, I will finish.
Sarah Olney
I rise briefly to speak against amendment 234 in the name of my good and hon. Friend the Member for Harrogate and Knaresborough. I will keep it brief as I know he is not going to press to a vote.
First, the Bill that was voted on on Second Reading was a Bill for terminally ill adults in the last six months of their lives. I do not believe attempting to amend the scope of the Bill in Committee is what the House has asked us to do. I think the House voted for a Bill that was specifically for people within the last six months of their lives and that to be amending it—although I accept he is not putting it to a vote—is not in order.
Secondly, I want to reflect on Professor Sir Chris Whitty’s oral evidence to the Committee about how difficult it is to determine when somebody is within six months of the end of their life and how much more difficult it would be to determine whether someone is within the last 12 months of their life, notwithstanding that we are talking about a very specific category of people. For me, that really does give rise to the fear that we would not be able to make a specific determination on whether somebody was in the last 12 months of their life. There would be a risk that people actually have many years left to live. In the case of motor neurone disease, for example, we have seen prognoses of between two and five years, so we risk shortening people’s lives unduly. Furthermore, people might not want to make the prognosis, and therefore people who would like to have the right to end their life in their final 12 months because they have a neurodegenerative disorder might be denied that right, because it is impossible to come to such a determination.
Danny Kruger
I will be as quick as I can be. I recognise the powerful contributions that have been made on a number of the amendments. I pay tribute to the hon. Member for Broxtowe, who made a very interesting speech in support of her amendment 123. I was struck by her point that we should do what we can to reflect the reality of clinical situations in people’s lives. I very much respect the power of the arguments she made. My concern is that by changing “inevitably” to “typically”, her amendment, although it might reflect reality more closely, would widen the scope of eligibility. I am afraid I will not support her amendment, but she made an important speech about how things actually work.
I will speak briefly in support of amendment 282 in the name of the hon. Member for York Central (Rachael Maskell), and of amendments 48 and 402 in the name of the hon. Member for Bradford West. At the end, I will refer quickly to the amendments in the names of the hon. Member for Harrogate and Knaresborough and of my hon. Friend the Member for Runnymede and Weybridge (Dr Spencer). All those amendments, with exception of the last ones, fit the Bill to the campaign—they make the Bill more accurately applicable to the people whom the campaigners have been campaigning for and whom everyone has the most sympathy with.
Amendment 282 in the name of the hon. Member for York Central would restrict eligibility to people with a one-month diagnosis only. I stress that the amendment is probing and I do not propose to press it to a vote on her behalf. She tabled it and I am speaking to it to make the point that, if we are serious about the Bill being for people who are dying and not for people who are not—for people at the very end of their life, as we hear so often—we need to be much stricter about the period of prognosis. I will not repeat points that have been made by other hon. Members, but the fact is that the six-month test is literally as good as tossing a coin. It has a less than 50% accuracy. In particular for advanced cancers and neurological conditions, accuracy is very low.
Jack Abbott
A line has to be drawn in the sand somewhere. Will the hon. Member define what an adequate timeline would look like for him to be satisfied?
Danny Kruger
The hon. Member invites me to suggest that I think it would be possible to draw a safe safeguard. I do not. I think that one month is better than six months, because with one month we can have more accuracy and doctors are more genuinely right when they say that someone is close to death at that point, while six months is much more inaccurate and 12 months is notoriously inaccurate. If we restrict the Bill by using a time limit, that limit should be as close to death as possible in my view.
Kim Leadbeater
Does the hon. Member agree that if we were to reduce it to one month, there would be absolutely no way to have the robust process set out in the Bill—or, indeed, I would argue, to have any sort of robust process?
Danny Kruger
I accept that, which is why amendment 282 is probing only. It is trying to demonstrate the point. I recognise that even the expedited process is likely to take up to a month to get through, so that would be difficult. Nevertheless, if our intention is to restrict this to people who are literally in their last days, which is frequently what we hear, I think it would be appropriate to restrict the time.
Danny Kruger
I am not. I think we have allowed six months to creep into common legal parlance because of the Social Security Contributions and Benefits Act 1992; we now recognise in law that it is possible to have certain rights and entitlements on the basis of a six-month prognosis. I presume that is the basis of it. It does feel like a reasonable period, and I understand the rationale for it, but given the difficulty of prognosis and the intense seriousness of what we are doing, I think it is inappropriate and dangerous.
Another way of achieving greater safety—less precise but perhaps more generous to people who want an assisted death—is to tighten the definition of terminal illness to mean those whom doctors think it is reasonably certain, rather than reasonably expected, will die within six months. That is the intent of amendment 48 tabled the hon. Member for Bradford West. The amendment also insists that the condition is terminal even with “all recommended treatment”, so that somebody could not make themselves eligible by refusing treatment. That is a very important point that the hon. Lady is trying to insist on.
By the way, that does not mean—and I hope people will not conclude that it does—that someone is required to have every treatment that might be possible, including invasive and unpleasant chemotherapy. The point is that it would have to be treatment recommended by the doctor: if the doctor recommends it, then it is appropriate. A doctor might be offering chemotherapy, but they would not be recommending it in all circumstances.
For the avoidance of doubt—an important phrase— I think that the hon. Lady’s amendment 402 is very important too. Just in case nutrition is not seen as treatment—perhaps it is arguable that it may not be—it is very important that we specify explicitly that declining food or drink does not qualify someone for an assisted death.
Naz Shah
Does the hon. Member agree that one point that is really important in this afternoon’s debate is that a person has a right to refuse treatment, and indeed food and water, if they have capacity, but that malnutrition is practically reversible? The argument has been made by doctors in Oregon around the voluntary stopping of eating and drinking that doctors cannot legally force a person with capacity to eat, and if they refuse food, their condition can be considered irreversible and terminal. That is the crux of the point. Does he agree with me?
Danny Kruger
I think so. The hon. Lady is absolutely right that there is this difficult loophole that somebody may have capacity and be refusing food and drink and would therefore potentially be eligible. In the Bill as it stands, we have an expedited process for people whose prognosis is only a month. There, the 14-day waiting period could be reduced to just 48 hours. If a person stopped eating and drinking, their death would almost certainly happen within a month. In other words, a person who is not terminally ill could make themselves eligible for an assisted death within 48 hours simply by refusing sustenance. It is very important that we recognise that and explicitly exclude it.
I will refer quickly to other jurisdictions where this specific situation occurs and the voluntary stopping of eating and drinking is used to qualify for legal drugs. A peer-reviewed article in the Journal of the American Geriatrics Society discusses this case—it may be the one referred to earlier. The authors noted that if anyone can access VSED—voluntary stopping of eating and drinking—then anyone can qualify for medical assistance in dying. In Colorado, 12 people qualified for assisted suicide based on a diagnosis of severe malnutrition.
The American Clinicians Academy on Medical Aid in Dying, an organisation of doctors who provide assisted suicide, acknowledges this loophole. Its guidance states that
“there is nothing in the letter of the law”
to prevent voluntary stopping of eating and drinking from being used in this way. It adds that that would
“essentially eliminate the criteria of terminal illness,”
because a person could always qualify as having terminal illness if they stopped eating and drinking. That is obviously not what the Bill’s sponsor and drafters wish. I hope they will consider accepting the amendment to close that loophole.
I will not repeat points made very eloquently by my hon. Friend the Member for Reigate, but I echo the need to ensure that the Bill is not for conditions that, although they cannot be reversed by treatment, can nevertheless be controlled or substantially slowed. I will therefore support the amendments in the name of my hon. Friend the Member for South Northamptonshire.
I pay tribute to the hon. Member for Harrogate and Knaresborough and to the people he speaks for in tabling amendment 234. I recognise absolutely that the MND Association has pointed out that the six-month rule would not work for all MND sufferers. It successfully persuaded the last Government to change the rules on benefits in recognition of that point, and its evidence to us, it has requested a clear and workable definition for assisted suicide. It was not very clear on what that would be, and there are practical problems with extending to 12 months, specifically the one we have with six months—the difficulty of prognosis, which would be twice as bad. I also refer to the evidence from Professor Sleeman, who made the point that a non-neurologist would find it particularly difficult to make an accurate 12-month prognosis for MND.
The main reason to object to the principle of the amendment—I appreciate that the hon. Gentleman is not moving it, but it is an important principle to discuss—is that it makes no sense at all to have two different prognosis periods. Of course, we can see where it will go. The fact that the amendment has been tabled and selected, that it is in scope, and that people will support it in this Committee or beyond, or outside Parliament, is evidence of where things go. We saw it very clearly in the evidence we heard from witnesses from Australia, who pointed out that there is no logical reason to have two prognoses—one for cancer and one for neuro-degenerative disorders. Their response was, “Well, let’s make it 12 months for everyone,” and of course that is the way things would go.
I finish with a tribute to the great quixotic effort of my hon. Friend the Member for Runnymede and Weybridge, who is not on the Committee. Runnymede is the home of Magna Carta; the spirit of liberalism lives on in my hon. Friend, a genuine liberal who wants to scrap the period of prognosis altogether, because he genuinely believes in absolute autonomy. I have been trying to make the Bill live up to its claim to be a Bill for safeguarding; he wants it to live up to its claim to be a Bill for autonomy. In principle—in logic—he is absolutely right. If we think that some people should have access to suicide assisted by the state, then why should person A get it and not person B? Needless to say, I disagree with him.
Lewis Atkinson
I rise to speak in favour of the current, tightly drawn eligibility criterion of a six-month terminal diagnosis. I agree with my hon. Friend the Member for Bradford West that that was a central plank of the Bill as introduced and as debated across the House on Second Reading. I therefore rise to speak against all the amendments tabled to the clause.
Dying people want to put their affairs in order. That includes thinking about the death that they want and how they want to spend their time with their family. Dying people do not want to die, but they do not have an option to live. I feel that the way we talk about death perhaps has not been fully reflected in the debate we have had on the amendments.
In my mind, the evidence from elsewhere is very clear that those who seek assisted dying seek approval for it, going through the safeguards—significant safeguards, as set out in the Bill—so that they can spend the remaining time with their family, with enhanced feelings of control and autonomy, removing some of the fear that causes them to ask, “What if I will have no way out of inevitable pain?” That does not mean, of course, that people wish to die more quickly. The fact that the Bill sets out a six-month eligibility criterion does not mean that people will rush to end their own lives as soon as it is possible to do so. It means that six months is the threshold at which they can start potentially exploring the options and getting through the onerous—rightly onerous—process of eight different stages of capacity checks, three different stages of approval, multiple doctors and so on, so that they have the option. Indeed, as my hon. Friend the Member for Spen Valley set out earlier, a significant proportion of people who have been approved for assisted dying elsewhere do not take up that option, because their end of life is not painful—and that is fantastic—or can be managed through palliative care. That is something that we would all want. However, knowing that they have the option significantly increases their quality of life, their ability to relax with their families and their ability to spend time with their loved ones.
Naz Shah
My hon. Friend is making a powerful speech, and I agree with what he says about autonomy. As I said earlier, autonomy does not necessarily have to lead to pain, and it could be that I do not want to get to that stage. People will never know whether they could have lived longer. Does he not agree?
Lewis Atkinson
Sensible amendments have been tabled elsewhere in the Bill—not to the clause that we are debating—that would strengthen the initial conversations and ensure that people make informed decisions and have access to, and conversations about, all the forms of support, psychological or otherwise. I think that those will address my hon. Friend’s point.
In terms of the eligibility criteria, Chris Whitty was clear that there is diagnostic uncertainty in both directions. He said that
“a significant minority of people die before they actually get to the point”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 37, Q15.]
of the six-month prognosis. Because of that uncertainty, if we attempted to make the criterion much less than six months, we would end up excluding people. From all the conversations I have had, it is clear that once people have a terminal diagnosis, they want to put their affairs in order; doing so means that they can enjoy their final months with their families. We must not reduce eligibility and limit access to those whose disease unfortunately progresses more quickly than they would like and the prognosis suggests. I therefore oppose amendment 48, in the name of my hon. Friend the Member for Bradford West.
The amendment talks about “recommended treatment”. In all my years in the NHS, shared decision making has been a key principle. No one other than the person in question can make the decision about what trade-off they are willing to accept. Invasive chemotherapy may have a 20% chance of elongating my life. Am I willing to accept a 20% chance? Am I willing to accept a 30% chance? What I decide is right for me may be different from what other individuals decide, so a doctor is not in a position to say, “You should accept this because it will give you a 10% chance,” or, “It will give you a certain level of pain that I’m willing to accept.” We each have to make those decisions ourselves.
Lewis Atkinson
No, I will make some progress.
I feel that the amendment risks pressuring people to accept courses of intervention against their will, and I do not think it is consistent with the important principles of autonomy and consent. Because of the safeguards, approvals and reflection periods built into the Bill, going through the process of approval will clearly take in excess of a month. That is why amendment 282, in the name of my hon. Friend the Member for York Central, which would limit the eligibility to one month, is fundamentally not compatible with the safeguards in the Bill, as my hon. Friend the Member for Spen Valley made clear. To me, six months is absolutely the right balance. It reflects people’s wish to put their affairs in order and allows for prognostic uncertainty on the downside—someone given six months may actually only have two or three months to live—but it still allows the operation of robust safeguards and reflection periods.
I turn briefly to the other amendments. I commend my hon. Friend the Member for Broxtowe for the points she made. I share the concern that replacing “inevitably” with “typically” would risk weakening the definition of “terminal illness” and expanding access to other conditions. I fear that “typically progressive” is a weaker interpretation, so I cannot support the change, because I support a tightly drawn Bill with tightly drawn eligibility criteria. For the same reason, although I have sympathy for the amendment tabled by the hon. Member for Harrogate and Knaresborough, I think it goes beyond the scope of what the House discussed in November and the contours of the current debate.
Amendments 9 and 10 refer to disease being controlled or substantially slowed. Those are not recognised medico-legal terms. What is the definition of “substantially slowed”? Who would define it? Is it something that takes 20%, 50% or 100% longer? We talk about the risk of inserting undefined terms and of court interpretation, and I fear that introducing such an amendment would give rise to that.
The people best placed to make decisions about whether the treatment will suitably slow the progression of the disease are the dying people themselves. They are the only people who should do that—fully informed, of course, by their medical and clinical teams. Each of us, when the end is nigh—it will come to me, as it will to us all—has to make that decision ourselves, not on the basis of a recommendation mandated in law or some definition of “controlled” or “substantially slowed”. It feels that the legislature would be putting in primary legislation decisions that I should make about the treatment that I should accept, so I am not in favour of those amendments.
I finish with reference to amendment 402. Although earlier I wanted to make progress, I do not want to rule out any further interventions, if my hon. Friend the Member for Bradford West or others would like to come in. I recognise the concern, and we need to talk about people with anorexia with the respect, dignity and seriousness they deserve. I have heard it said—I think my hon. Friend said it—that there is nothing in the Bill to stop that being the case, and I fundamentally disagree for many reasons. First, as the Bill sets out, capacity is checked eight times. The Court of Protection has repeatedly found that people with anorexia do not have the capacity to make decisions about stopping eating. Although a best interest test may have been made, that is not relevant, as set out in the Bill. People have to have the capacity to request an assisted death, checked eight times. My hon. Friend the Member for Spen Valley has already set out that she is minded to accept—or will accept—amendment 6 to clause 9(3)(b), so that, if there is any doubt about capacity, a psychiatric opinion “must” be sought.
Like my hon. Friend the Member for Bradford West, I considered the written evidence saying that, in instances of a patient with anorexia, psychiatric input is absolutely necessary. Absolutely—in every case where someone has anorexia, under an amended clause 9, psychiatric opinion must be sought as to capacity. That is before we get to the further set of amendments to clause 12.
Lewis Atkinson
That is not my understanding, and I have sought some clarification, including from Professor Hoyano, who provided oral evidence to us, and I believe that that was not her understanding either.
Given the “must” in clause 9 regarding psychiatric referral to a third tier panel—which, let us remind ourselves, is not in place in any of these jurisdictions from which figures are cited around potential deaths of people with anorexia—I feel there are significant safeguards. Furthermore, we have just agreed to amendment 399 tabled by the hon. Member for East Wiltshire, clarifying the “medical condition” piece, which provides a further safeguard.
I respect the need for us to consider these matters carefully, but I urge a degree of holistic thinking when we talk about individual clauses. Some of the statements being made—that there are no protections in place—just do not fly, to me, given the Bill as a whole.
Dr Tidball
My hon. Friend is correct in his interpretation of the judgments in those cases, but does he agree that the evidence given by Chris Whitty to clarify his statement was helpful in clarifying that the application of the test for capacity is heavily orientated towards the gravity and complexity of the decisions to be made? That is also underpinned, as my hon. Friend underlined, by the amendment tabled by my hon. Friend the Member for Spen Valley.
Lewis Atkinson
I do, and I thank my hon. Friend for bringing my attention to that; I was struggling to put my hands on it.
In my view, clause 2 does a difficult job very well in tightly drawing eligibility criteria so that the Bill does what it says on the face of it—that it allows access for terminally ill adults, at the end of their life. By having a six-month prognosis, rather than anything else, it allows individuals to put their lives in order and have the best last months of their lives possible. I therefore speak against the amendments and in favour of the clause as drafted.
Stephen Kinnock
As usual, I will make brief remarks on the legal and practical impact of amendments, while emphasising that the Government continue to remain neutral on the Bill and on assisted dying more broadly. This series of amendments, which I will take in turn, seeks to change the definition of “terminally ill”, either widening or narrowing the cohort of people able to access assisted dying services.
Amendment 123 would change what it is to be “terminally ill” for the purposes of the Bill from having an “inevitably” to a “typically” progressive illness, disease or medical condition that cannot be reversed by treatment. That would widen the pool of those able to access assisted dying services by reducing the level of certainty that a doctor must have that the illness, disease or medical condition in question is progressive—from one that is “inevitably” progressive to one that is “typically” progressive.
Amendment 9 seeks to amend the definition of “terminally ill” such that it would not include a person who has an inevitably progressive illness, disease or medical condition that can be reversed, controlled or substantially slowed by treatment. The effect of the amendment is that such a person would not be eligible for lawful assistance to voluntarily end their own life. Should the amendment be accepted, the effect would be to restrict the eligibility for assisted dying services to a narrower category of patients than is currently set out in the Bill. The amendment may make assessment of a person’s prognosis and eligibility under the Bill more extensive, as it would be likely to require an assessment of a broader range of treatment options.
Naz Shah
I apologise to my hon. Friend the Member for Sunderland Central; I was actually incorrect. The girls did not have capacity, so he was correct. However, in the cases that went before the court, those nine girls did not have capacity yet the judge made a decision that they should not be force-fed to keep them alive, and they should be allowed to die. Perhaps the Minister could comment on how the amendment would not meet that criteria. Would it fix that loophole?
Stephen Kinnock
I thank my hon. Friend for her intervention. I am just talking about the amendment to reduce the time from six months to one month. I will come on to the issue of eating and drinking in a second.
As amendment 282 would reduce the time within which the person is expected to die from six months to one month, it would also limit the number of people with a terminal illness who would be eligible for assisted dying under this legislation. Furthermore, there may be very challenging workability issues in delivering a service within one month, given the other time-dependent safeguards elsewhere in the Bill.
Amendment 51 would remove the requirement for the patient to have a six-month prognosis to be defined as “terminally ill”. If agreed to, it would expand the pool of people eligible for lawful assistance to voluntarily end their own life beyond those with a life expectancy of six months or less. In other words, it would remove the timeframe requirement of when death can be reasonably be expected.
Amendment 234 would widen eligibility to include cases of neurodegenerative diseases, illnesses or medical conditions where a person is reasonably expected to die within 12 months. Matters such as this are for the Committee, and ultimately for Parliament, to decide, but it is clear that the effect of the amendment would be to broaden the number of people eligible for lawful assistance to voluntarily end their own life under this legislation.
Amendment 10 would provide that, if treatment exists for a person’s progressive illness, disease or medical condition that alters the overall prognosis of that person’s condition, they are not terminally ill and would not be eligible for assisted dying services.
Amendment 402 would exclude a person who would not otherwise meet the definition of “terminally ill”—namely, being diagnosed with an inevitably progressive illness with six months or less to live—if that person meets that definition as a result of stopping eating or drinking. The effect of the amendment would be to prevent a person from being defined as “terminally ill” as a result of their own actions of stopping eating or drinking, or both. The Government’s analysis suggests that this may also exclude people who are terminally ill under the definitions of the Bill and who are, for various reasons, unwilling or unable to eat or drink. For example, it may include those with conditions such as oesophageal cancers, which could result in their being unable to eat or drink.
Furthermore, it is unclear whether someone who is on intravenous fluids or being fed through a feeding tube would be considered to have stopped eating or drinking under the amendment. I think that addresses the concern expressed by my hon. Friend the Member for Bradford West, but she is welcome to intervene again if she would like to. The amendment could therefore lead to uncertainty over the person’s eligibility for assistance under the Bill.
The Government have taken a neutral position on the substantive policy questions relevant to how the law in this area could be changed. Questions around the definition of terminal illness and who should be eligible to access voluntary assisted dying under the legislation are matters for the Committee and for Parliament as a whole. However, I hope that these observations are helpful to the Committee in considering the Bill and the amendments tabled by various Members.
Kim Leadbeater
Colleagues will be pleased to know that, despite my copious notes, I do not intend to speak for very long, because I believe we have had a very thorough and robust debate on these issues. The Minister makes a valuable point on amendment 402, which I do not think anyone else raised. Coincidentally, it relates to the person in the Public Gallery this morning, whose mum had a horrible form of cancer and had to have her tongue removed. She would have stopped eating or drinking, but it was not a choice; it was an inevitable result of her condition. She would have been excluded from having an assisted death, which I am sure is not the intention of my hon. Friend the Member for Bradford West.
We have had an excellent debate and covered a lot of ground. I do not intend to add anything more on this group of amendments. I will only say that if we get a move on, we might be able to get through clause 2 before we close at 5 o’clock.
Juliet Campbell
I beg to ask leave to withdraw the amendment.
Amendment, by leave, withdrawn.
Amendment proposed: 9, in clause 2, page 1, line 24, after “reversed” insert
“or the progress controlled or substantially slowed”.—(Rebecca Paul.)
This amendment would mean that illness, disease or medical condition etc, the progress of which can be managed or controlled by treatment are not characterised as terminal illness.
Question put, That the amendment be made.
Danny Kruger
I beg to move amendment 12, in clause 2, page 2, line 2, at end insert—
“(c) their illness, disease or medical condition is found on a list that the Secretary of State may by regulations specify.”
This amendment would require an illness, disease or medical condition to be specified in regulations that may be made by the Secretary of State to be considered a terminal illness under the Act.
The Chair
With this it will be convenient to discuss amendment 13, in clause 2, page 2, line 10, at end insert—
“(4) Regulations under subsection (1)(c) are subject to the affirmative procedure.
(5) The Secretary of State may, where they consider it appropriate, make regulations that expire after twelve months from their being made to include temporary additions to the list under subsection (1)(c).
(6) Regulations under subsection (5) are subject to the negative procedure.”
This amendment is consequential on Amendment 12 and specifies regulations under that amendment must be made by the affirmative procedure. Temporary additions could be made by regulations subject to the negative procedure.
Danny Kruger
I will be fairly brief in speaking to the amendments, but they go to the heart of things. We have tried to tighten the Bill by excluding medical conditions from the definition of a terminal illness; I am very pleased that the Committee has accepted that tightening. We have also sought to exclude illnesses that are consequent on mental disorders and disabilities; we have not succeeded with that tightening. We have further sought to tighten the Bill by circumscribing the prognosis period more precisely.
The amendments would tighten the Bill further by explicitly listing the illnesses that qualify. The argument is quite straightforward. The problem that we are trying to address is that, under the Bill, it will be up to doctors and potentially to the court—or a panel, if that is where we go—to decide whether a particular condition is terminal. It would be set by case law and by medical doctors deciding what conditions qualify.
Lewis Atkinson
I rise to speak briefly in opposition to the amendments. When the chief medical officer gave oral evidence to the Committee, the hon. Member for Richmond Park asked him:
“Is it possible to come up with a list of illnesses that are terminal that would qualify under the legislation?”
The response was very clear:
“If I am honest, I think it would be extremely difficult.”
It is difficult in both directions, because some illnesses or diseases can be terminal, but are not necessarily terminal. People can live with prostate cancer for many years. Setting out in the Bill a list of specific diseases or illnesses that would be eligible risks achieving exactly the opposite of the amendment’s intention. To quote Professor Whitty again:
“Equally, there are people who may not have a single disease that is going to lead to the path to death, but they have multiple diseases interacting…I therefore think it is quite difficult to specify that certain diseases are going to cause death and others are not, because in both directions that could be misleading.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 32, Q5.]
Further to the point that the hon. Member for East Wiltshire made about on judicial oversight, my understanding is that giving power to the Secretary of State to make a list that includes only some diseases is absolutely inviting action through the courts on the reasonableness of why one disease is on the list while others are not. We would end up in much more of a legal quagmire than we otherwise would. The safeguards that we have talked about, as to eligibility criteria, terminality and capacity, are in the Bill as drafted. Those are the safeguards that we need. A list would further muddy the water and would create confusion.
Stephen Kinnock
I have some brief comments to make. Amendments 12 and 13 seek to further define a terminal illness for the purpose of the Bill; I will set out some details about their effect. The amendments would add a requirement that a list of a terminal illnesses for which people are eligible to seek assistance under the Bill be specified in regulations made by the Secretary of State. The effect would be that only a person who has an illness, disease or medical condition listed in regulations, and who meets the other eligibility criteria, would be eligible to be provided with lawful assistance to voluntarily end their own life.
I draw the Committee’s attention to the chief medical officer’s oral evidence given on 28 January, which was well articulated by my hon. Friend the Member for Sunderland Central. The CMO said that multiple diseases may interact, making it
“quite difficult to specify that certain diseases are going to cause death and others are not”.––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 32, Q5.]
It is also the case that many illnesses, diseases or conditions that may be terminal in one case may not be so in another. Committee members may therefore wish to consider where a focus on specific illnesses or diseases, rather than on the facts of an individual case, could aid clinicians in their decision making.
The amendments also include a discretionary power for the Secretary of State to make regulations that expire after 12 months in order to make temporary additions to the list of illnesses that meet the definition of terminal. It is not clear what types of illnesses, diseases or medical conditions are intended to be captured in such regulations. I hope that those observations on the purpose and effect of amendments 12 and 13 are helpful to the Committee in its considerations.
Danny Kruger
I sense that the wish of the Committee is probably not to accept the amendment, so I do not propose to press it to a Division, but we have just heard quite clearly, in response to the amendment, that the Bill is essentially permissive. Once again, we have declined to put clear parameters around the eligibility for this new law. We have heard specific conditions mentioned so many times in the course of the debates over the preceding months. It is a shame that we are not prepared to state those conditions clearly in the Bill, with the opportunity for Parliament to amend them over time.
I end by echoing a point that the hon. Member for Spen Valley made about the importance of good data. I hope that if the Bill passes, we will have the best data collection in the world. I am afraid to say that data collection is not good in other jurisdictions. Nevertheless, it is possible to see how often in Oregon, Australia, Canada, and Europe, albeit in a minority of cases, conditions that most people would not recognise as deserving of assisted dying, including anorexia, arthritis, hernias and diabetes, are listed as causes of death. Indeed, so is frailty, as I discussed earlier.
My fear is that if we pass the Bill, we too—if we do data collection properly—will have a shameful appendix to the annual report showing that people have had an assisted death for reasons that most people would regard as inappropriate. I will leave it there. I beg to ask leave to withdraw the amendment.
Amendment, by leave, withdrawn.
Amendment made: 401, in clause 2, page 2, line 5, leave out “, disease or medical condition” and insert “or disease”.—(Danny Kruger.)
This amendment is consequential on Amendment 399.
Amendment proposed: 402, in clause 2, page 2, line 6, at end insert—
“(2) A person who would not otherwise meet the requirements of subsection (1), shall not be considered to meet those requirements as a result of stopping eating or drinking.”—(Naz Shah.)
This amendment means that someone who is not terminally ill within the meaning of subsection (1) cannot bring themselves within that definition by stopping eating or drinking or both.
Question put, That the amendment be made.
Terminally Ill Adults (End of Life) Bill (Fourteenth sitting)
Wednesday 26th February 2025
(9 months, 2 weeks ago)
Public Bill CommitteesTerminally Ill Adults (End of Life) Bill 2024-26 Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 26 February 2025 - (26 Feb 2025)
The Chair
Will everyone ensure that all electronic devices are turned off or switched to silent mode? Tea and coffee are not allowed in the Committee Room. We will continue line-by-line consideration of the Bill. I gently ask people to abide by my exhortations yesterday.
Clause 3
Capacity
Daniel Francis (Bexleyheath and Crayford) (Lab)
I beg to move amendment 322, in clause 3, page 2, line 13, at end insert—
“except that—
(a) for the purposes of an assessment of capacity under this Act, a person must be assumed not to have capacity unless it is established they do have capacity, and
(b) section 1(3) of the Mental Capacity Act 2005 shall not apply.”
This amendment reverses the burden of proof in the Mental Capacity Act, so that those assessing a person’s capacity would not be able to assume that the person has capacity without evidence.
The Chair
With this it will be convenient to discuss the following:
Amendment 49, in clause 3, page 2, line 13, at end insert—
“(2) The burden of proof for an assessment of a person’s capacity is the balance of probabilities as required under section 2(4) of that Act.
(3) For the purposes of any such assessment, the principles set out in subsections (2) to (4) of section 1 (The principles) of that Act apply.”
This amendment would set out the burden of proof for capacity assessments as being the same as the Mental Capacity Act 2005 and apply the principles from subsections (2) to (4) of section 1 of the Mental Capacity Act 2005.
Amendment 50, in clause 3, page 2, line 13, at end insert—
“(2) An assessment of a person’s capacity under this Act must include, but is not limited to, an assessment that the person understands—
(a) the options for care and treatment of the terminal illness, including—
(i) the extent of prognostic certainty of their illness or condition, and
(ii) the likely effects on day-to-day functioning, symptom management, and pathway to and experience of death of—
(A) relevant and available care and treatment including palliative care, hospice or other care,
(B) withdrawal or absence of care and treatment, and
(C) requesting assistance in ending their own life under the terms of this Act.
(b) a decision to proceed under this Act does not prevent or make unavailable any care and treatment provision that would normally be provided.
(c) the person’s decision to proceed under this Act must be theirs alone and not bound or directed by the views or decisions of others.
(d) the person is able to change their mind at any stage of the process for requesting assistance to end their own life under the provisions of this Act, regardless of previous decisions.
(e) a decision to proceed under this Act will lead to the provision of a substance that is reasonably expected to end someone’s life following administration and is reasonably expected to be irreversible.
(f) relevant legal consequences from proceeding with a request for assistance to end their own life, including life insurance and categorisation of death certification.”
This amendment would set out certain non-exhaustive requirements for a finding that a person has capacity.
Amendment 398, in clause 3, page 2, line 13, at end insert—
“(2) The following provisions of the Mental Capacity Act 2005 shall not apply to this Act—
(a) sections 1(2) to (4)
(b) sections 2(2) and (4).
(3) Section 2(1) of the Mental Capacity Act 2005 shall apply to this Act as if it read as follows—
‘For the purposes of this Act, a person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter.’
(4) A person shall be considered not to have the capacity to make a decision to end their own life unless it is proven beyond reasonable doubt that they do have that capacity.”
This amendment disapplies several principles of the Mental Capacity Act: the presumption of capacity, the duty to help someone reach capacity, the irrelevance of an unwise decision, the application of the balance of probabilities, and the diagnostic test. It retains the functional test of capacity and requires that capacity be proven beyond reasonable doubt.
Clause stand part.
Daniel Francis
It is a pleasure to serve under your chairmanship, Mr Dowd. I accept that we had a long debate on issues relating to mental capacity in respect of the amendments tabled by the hon. Member for Richmond Park, but we heard in oral evidence significant representations and concerns regarding how the Mental Capacity Act 2005 would work in connection with assisted dying. The purpose of the amendment is to reverse the burden of proof in relation to capacity.
In general—rightly, as I have said previously—a person is assumed to have capacity unless it is shown that they do not. As we have heard, that is a deliberately low bar in order to preserve the basic human right to participate in society and to ensure that normal daily life does not require us all to prove that we have capacity every time we make a decision. The downside of that assumption, however, is that in situations of limited or unreliable evidence, or a very borderline case, the person has to be assumed to have capacity. It is surely clear that that could put many people into real danger if such an approach were taken with assisted dying.
We should not be afraid to say that a person who is terminally ill is potentially vulnerable. Depression and stress are common and understandable responses to a terminal diagnosis and, whether we like it or not, some people in our society will prey on the fragile for their own gain. Our job is to confront the risk of someone being given access to an assisted death not because that is their considered wish, but because no conclusive evidence is available to the doctors at the time of the assessment, or because someone is controlling or coercing that person and able to persuade them in favour of an assisted death that they do not truly want by hiding any signs of their impaired capacity until it is too late.
On previous amendments, I have spoken from my personal perspective. As parents of a child with a learning disability, our greatest concern is what will happen to our child after we have gone. That is the principal thing—the sole thing, I think—that keeps my wife and me up in the night: what will be that determination for our daughter one day? I hope that her twin will remain with her, and that her twin will be the person who makes those decisions for her, but that may of course not be the case. I know that we may have to entrust the state or others to make those determinations for her in due course.
Every parent of a child with a learning disability considers that determination every day. I know that it weighs on their minds not only in connection with this clause; the decisions about their child will also weigh on their minds when we get to clause 4. I am not talking about my daughter’s case, because she does not have enough capacity, but for those people who do have enough capacity—we know from the evidence that the majority of people with a learning disability do have enough capacity—the decisions that may be made for them in due course will weigh on their minds.
In those circumstances, I suggest it is appropriate and reasonable that the assisted dying process maintains the other principles of the Mental Capacity Act, but reverses the presumption in favour of capacity in order to keep people safe. We have heard that doctors are familiar with the Act, including in cases where people sometimes do and sometimes do not have capacity. On that basis, it is not a great leap for them to look for evidence that a person does have capacity, rather than the opposite. That is a normal exercise of their judgment. It is a compassionate and common-sense approach.
I remind Members of what I have said previously about the position of the Law Society: the issue of what capacity should mean, and how to assess it, is central to the Bill. The Law Society considers that the Bill should be clearer in its approach to capacity for the purposes of ending a terminally ill person’s life. Although expert opinion may reasonably differ on whether to use the Mental Capacity Act approach or to introduce a stand-alone definition, the utmost clarity is required if the Bill’s safeguards are to be robust and effective. The Law Society’s recommendation is that before the clause becomes law, a comprehensive consultation should be undertaken to allow relevant experts to share views on the appropriate definition of capacity for the purpose of the Bill.
I will not quote everything again—I have quoted it all previously—but we have heard oral evidence on this matter, including concerns about how the Mental Capacity Act may be interpreted, from Professor House, through Baroness Falkner, Fazilet Hadi, Dr Hussain, Chelsea Roff, Professor Owen and Dr Price, to Dan Scorer of Mencap. My amendment is a compassionate and common-sense approach that would provide reassurance to members of the public. I invite the Committee to support it.
Amendment 398, tabled by the hon. Member for Reigate, goes further than my amendment, and beyond its scope, but I have some sympathy with it. I will repeat some of what I have said previously, in that I remind the Committee of the statutory principles of the Mental Capacity Act:
“A person must be assumed to have capacity unless it is established that he lacks capacity…A person is not to be treated as unable to make a decision unless all practicable steps”—
that remains a grave concern of mine—
“to help him to do so have been taken without success”,
and a person
“is not to be treated as unable to make a decision merely because he makes an unwise decision.”
I remain happy to stand corrected, as I have continued to ask for clarification on this matter, but my point that doctors or other professionals would have to take all practical steps to help them to make a decision related to assisted death has not been challenged. The matter was clearly considered to some degree previously, given that clause 62 of the Mental Capacity Act 2005 states:
“For the avoidance of doubt, it is hereby declared that nothing in this Act is to be taken to affect the law relating to murder or manslaughter or the operation of section 2 of the Suicide Act 1961…(assisting suicide).”
I also challenge whether the Bill’s authors have considered all the scenarios outlined in chapter 3 of the Mental Capacity Act code of practice, entitled “How should people be helped to make their own decisions?”, and particularly those relating to the involvement of family members and carers. Similarly, in chapter 4, “How does the Act define a person’s capacity to make a decision and how should capacity be assessed?”, the code states at paragraph 4.50:
“For certain kinds of complex decisions (for example, making a will), there are specific legal tests…in addition to the two-stage test for capacity.”
Those tests are laid out, but they do not include this scenario.
As I did yesterday, I refer to the Equality and Human Rights Commission paper provided to Members in advance of Second Reading:
“A vital factor in determining how to manage access to assisted dying will be the concept of mental capacity in the context of a decision of this nature and gravity. It will be important to ensure that all decision-makers involved in the process have a full and clear understanding of the law around mental capacity under the Mental Capacity Act 2005. Sensitive consideration must be given, in particular, to the interaction between mental capacity, mental health issues, learning disabilities and conditions such as autism. Clause 30 of the bill states that the Secretary of State ‘may’ issue codes of practice…However, it does not oblige them to do so.”
For those reasons, I remain concerned about continuing to use the full definition under the Mental Capacity Act 2005. I therefore commend the amendment to the Committee.
Dr Simon Opher (Stroud) (Lab)
I thank my hon. Friend the Member for Bexleyheath and Crayford for his sensitive and well presented amendment. I have a couple of things to say about it.
My hon. Friend says that the Mental Capacity Act is a low bar, but in the Act it is important that when we assess people for mental capacity we look at the gravity and complexity of the situation, and therefore take more consideration of deeper understanding of the issues if the gravity of the decision is very enhanced. There is scope within the Mental Capacity Act to take in these types of assisted dying assessments.
Daniel Francis
I hear that. There are different decisions, whether it is buying a coffee or seeking an assisted death. Would my hon. Friend concur that, for some individuals in those scenarios who may be by themselves because of the circumstances of their lives and about whose capacity there may be doubt, the doctor must presume in the first instance that they have capacity, and that the doctor must assist them in making a decision?
Dr Opher
Yes, I totally accept that. The Mental Capacity Act is set so that we assume capacity and look for evidence of lack of capacity. The great danger with the amendment is that it would change a whole raft of very well used provisions. As Professor Whitty said, the Act is used up and down the country every day; I have used it myself many times, and taught it as well. If we change the emphasis from the presumption of capacity to the presumption of incapacity, which is what my hon. Friend is suggesting, that is a major change in the Act.
Naz Shah (Bradford West) (Lab)
Given what my hon. Friend has just said—that he accepts the premise of my hon. Friend the Member for Bexleyheath and Crayford that the doctor would have to assist—can he help me to understand where that leaves the issue of autonomy if a doctor is, as he has agreed, allowed to assist in the decision?
Dr Opher
The way the doctor assists, if making a mental capacity assessment, is to try to tease out the four concepts. Does the patient understand what they are being asked to agree to? Sometimes mental capacity assessments are very straightforward and last five minutes; sometimes they last an hour. I have done one that lasted about 90 minutes because it was really important to tease out whether the patient genuinely understood what they were doing. That is the sort of assistance I am talking about. It is not about trying to persuade them to make a decision that I think is the right decision; it is just making sure that they understand it, can remember it and so on.
Dr Opher
Well, that was disputed by other psychiatrists. We are asking questions about whether the Mental Capacity Act is safe and correct for the Bill. This whole Committee is about making the Bill safe. None of us would dispute that. However, I think that if we accept the amendment, the Bill will become less safe because the amendment would change a massive piece of legislation and therefore have a number of repercussions that we do not understand.
Danny Kruger (East Wiltshire) (Con)
Chris Whitty made the same point that the hon. Gentleman has just made: that there would be knock-on effects and that the Mental Capacity Act works very well currently. Does the hon. Gentleman acknowledge that Chris Whitty himself misrepresented the Mental Capacity Act in the evidence he gave to the Committee? He had to write to us subsequently to clarify his comment, and his clarification contradicted the hon. Gentleman’s implication that the Mental Capacity Act has different thresholds for different levels of decision. Does the hon. Gentleman acknowledge that it does not? The Act has one threshold: capacity as it defines it. Some doctors may have longer conversations than others depending on the severity of the case, but the threshold is the same—Chris Whitty misrepresented it.
Dr Opher
I agree that the threshold is the same: does the patient have capacity or not? That is the single threshold. We often do mental capacity assessments for inheritance, control of bank accounts and that sort of thing; sometimes we do a very quick mental capacity assessment about the refusal of treatment. How long we take depends on how important the decision is. I suggest that a doctor assessing someone’s capacity to make a decision to end their life would have a serious, long discussion—up to 90 minutes, or possibly even two hours—to make sure that the doctor is convinced that the patient has capacity. The threshold is the same—it is about whether they have capacity—but that does not mean that the conversation is the same. In clinical terms, it is very clear that a conversation on those grounds would be much more involved than, for example, whether a person sees a dentist or not, or other conversations like that.
I totally understand the concerns that the amendment has been tabled to cover; however, my main point is that if we accept the amendment, it will make the Bill less safe. The reason for that is that, as I have said before, if we change something that is well used, and repeatedly used, it will make the interpretation much more complicated. We will have to re-train all the doctors and, I think, it will not protect patients.
Sarah Olney (Richmond Park) (LD)
At risk of repeating something said in a previous sitting, does the hon. Gentleman accept that the amendment is not trying to amend the Mental Capacity Act itself, and it is not trying to change how the Mental Capacity Act is used in the majority of situations in which it is already used? All it is trying to say is that in this particular circumstance the Act needs to be applied in a different way. We are not trying to rewrite the Act in itself or any aspect of the way in which it is currently used.
Dr Opher
I understand what the amendment is trying to do; my argument is that it will not achieve that because it will muddy the waters of a mental capacity assessment, which will make how we do it less safe. I would also like to return to Professor Whitty’s comments and to say that in the majority of cases mental capacity is very clear. It does not actually take very long to assess whether someone has mental capacity.
The Chair
Can the hon. Gentleman be allowed to fully answer the questions that the hon. Member for East Wiltshire and the hon. Member for Richmond Park asked, before we have an intervention on another point?
Dr Opher
It is really important to understand that for the majority of people mental capacity can be assessed reasonably quickly because it is very clear whether they have it or do not have it. What we are talking about, I think, is a small proportion of patients in which it is unclear whether they have mental capacity. There is scope in the Bill for those circumstances, when the patient should be referred to an enhanced level of mental capacity assessment by a psychiatrist or a psychological nurse. In that way, it makes it much safer. We do not need to redesign the Act for that small number of patients because we already have a very safe route to assess capacity.
Naz Shah
I thank the hon. Gentleman for giving way; he has been generous with his time. I do not know whether the hon. Gentleman has seen the evidence from Alex Ruck Keene KC on mental capacity. He sets out very clearly the myths around mental capacity, one of which is that mental capacity is well understood. He argues that it is not. How would the hon. Gentleman respond to that?
Dr Opher
I think that in most cases mental capacity is very well understood, and it is very clear, as I have said. I would say that, as practising clinicians, almost every GP has to do it. I would not sign up a doctor in training if they could not do it. I think it is a little bit rich to suggest that we cannot assess capacity. I agree with many of the comments that have been made about assessing capacity in more difficult cases for most doctors, and I think we do need an avenue, in those situations, to get further opinions.
Naz Shah
The hon. Gentleman said it would be rich for people to say that capacity cannot be assessed. That is not the case. I am not convinced about that, and I am not sure, from the evidence I have seen, that anybody is saying that anybody is not capable of assessing capacity per se. Would the hon. Gentleman agree that the argument is about assessing capacity for this Bill in particular? That has not been tested. The Royal College of Psychiatrists is very clear, as are many other experts, including legal experts, that the Bill has not been tested for that purpose. Therefore, the Mental Capacity Act does not meet the purpose for the Bill.
The Chair
Order. I will give people the opportunity to explore this issue but, as I have said, interventions are not mini speeches.
Dr Opher
I feel that the Committee has been through these points quite extensively. There is clearly a disagreement in our beliefs; I accept that, but it is very important to make the Bill as simple as possible, because that is the best safeguard. I believe that the Mental Capacity Act is the right test for whether people have capacity. I reiterate that if there is a doubt in the clinician’s mind, there should be an avenue to get an expert opinion on capacity.
Kim Leadbeater (Spen Valley) (Lab)
Is my hon. Friend reassured, as I am, that although we are focusing here on one conversation, we know from the provisions in the Bill that there will be multiple conversations? There will be a doctor, a second doctor, a psychiatrist, and then oversight by an expert panel. It is not just one assessment of capacity; there are multiple occasions. Does that reassure my hon. Friend, and hopefully other colleagues?
Dr Opher
It does reassure me, and I think it should reassure other Committee members. Having eight different people doing a capacity assessment is a very thorough safeguard for capacity. We have gone through the arguments many times in this Committee, but I do not feel that changing the polarity of mental capacity will do anything to make patients in this situation any safer. That is why I do not agree with the amendment. For fear of being interrupted any more, I think I will leave it at that.
Sarah Olney
I apologise for arriving late; thank you for calling me to speak anyway, Mr Dowd. I rise to speak in favour of amendment 50, which stands in the name of the hon. Member for Runnymede and Weybridge (Dr Spencer) and to which I have also put my name. I am conscious that we have been through many of the arguments about the Mental Capacity Act today and at an earlier sitting, but I am keen to press the amendment to a vote, because I think it would address some of the issues that have arisen.
The point of dispute appears to be whether the Mental Capacity Act, as it is currently operated for all the purposes for which it is used—I have no doubt that it is a very effective piece of legislation that is widely used and understood by clinicians everywhere, as the hon. Member for Stroud says—is the appropriate measure and tool to use for the Bill. This decision that people are embarking on is like no other, so I think it right and proper to consider whether the Act is the appropriate way to measure whether people are able to make it.
It is useful to reflect on the experience of the hon. Member for Runnymede and Weybridge, who drafted the amendment. I am conscious of the comments that the hon. Member for Ipswich made yesterday about poorly drafted amendments. My understanding is that the hon. Member for Runnymede and Weybridge has extensive expertise in the area; he is an expert in mental capacity assessment, and I dare say that if he were in the room he would have many useful and interesting things to say. That is why I think his amendment bears greater weight, to the extent that one Member’s amendment should be regarded as any better than another’s.
Key to the Mental Capacity Act is the capacity test, which is about the ability to understand, retain, use and weigh the relevant information. The amendment attempts to address what it means to make an informed decision. Dr Annabel Price, who gave oral evidence to the Committee in her role with the Royal College of Psychiatrists, said that people planning to make the decision of seeking an assisted death
“would need to be able to understand the impact of the substance they are taking and what the likely positives and negatives of that are…The informed consent process is different from a refusal of treatment, and the informed consent process feeds into the capacity assessment.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 277, Q361.]
The point, which has come up in previous debates, is whether an informed decision to refuse treatment can be regarded as the same as an informed decision to end one’s life. My personal view is that the two things are quite different, and that a different standard of capacity should therefore be brought to bear on the decision.
I support amendment 50 because it sets out in detail how the Mental Capacity Act should be used specifically in relation to this decision. As I said in an intervention on the hon. Member for Stroud, it would not change the Act or tamper in any way with how it is currently used; it would merely specify the particular ways in which it should be used in relation to the decision.
I hear what the hon. Member said about doctors’ use of the Act, as well as what the chief medical officer said. I am also conscious of what the hon. Member for Bexleyheath and Crayford has said about the variety of experience that he has, as a parent, with professionals’ understanding of the Act. That came across in a lot of the oral evidence. As the hon. Member for East Wiltshire said, the chief medical officer himself had to clarify the remarks that he made to the Committee in oral evidence. The chief medical officer implied that there were different ways of applying the Act depending on the decision to be made, but there are not—that was a very clear clarification. That implies that there is a difference in the way doctors approach the use of the Act. We cannot have a difference of approach when it comes to a decision of such momentous importance as the decision whether someone has the capacity to choose to end their life.
The amendment reflects the fact that there is value in attempting to standardise how the Mental Capacity Act should be used in relation to the decision. That is why we should agree to it: it is important that Members of this House make a clear statement in the Bill about what we expect doctors to do as they approach an assessment of capacity. We should specify the minimum understanding of capacity to choose an assisted death, which includes an understanding of the likely process of all treatment options, including non-treatment and prognostic uncertainty.
In her evidence, Dr Rachel Clarke said:
“I would not be the first person to make the observation that sometimes doctors can be very pleased with their own abilities at a particular practice, and that practice might be having a conversation where you are assessing someone’s capacity.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 80, Q103.]
Doctors have different assessments of their own ability to assess capacity. That is why a standardised approach, as set out in amendment 50, is so important. I stress how important it is that Parliament be the place where the standards for what MPs expect as an assessment of mental capacity are set. We should be the ones to determine them, rather than leaving them to the vagaries of individual clinicians.
The assessment of capacity and the explanation of treatment options to the person considering an assisted death need to include the extent of prognostic certainty about their illness or condition. We spoke yesterday about the difficulty of knowing whether someone has six or 12 months left to live, and of knowing the extent to which they are going to deteriorate. We also covered in detail the relevant and available care and treatment, including palliative care, hospice care or other care. That needs to be part of the conversation about somebody’s capacity to make the decision.
Amendment 50 states that
“a decision to proceed under this Act does not prevent or make unavailable any care and treatment provision that would normally be provided.”
It would therefore be clear that somebody had assessed the full range of their options. The amendment makes clear a fundamental issue that I do not think is otherwise covered by the Mental Capacity Act, or at least not to this level of specificity, which is that
“the person’s decision to proceed…must be theirs alone and not bound or directed by the views or decisions of others.”
We have talked about the importance of that issue in relation to the Bill as a whole, but it would be valuable to include it in the clause as a specific requirement for assessing somebody’s capability.
Doubts have been expressed across the Committee about whether the Bill goes far enough in assessing the extent to which somebody might be under duress or coercion. Putting such a provision in the Bill, as part of the capacity assessment, would be an important and essential safeguard. Once someone has made the decision to seek an assisted death, is the doctor or assessing person confident that the person could unmake the decision or change their mind at any stage?
Dr Opher
As my hon. Friend the Member for Spen Valley said, there are eight different opportunities for assessing capacity in the process, the last of which is before the patient takes the medicine that will end their life. At all those stages, it is possible to stop the process, and the patient is in total control.
I do not disagree with anything in amendment 50, but I believe that everything in it is already in the Bill, under other clauses. I do not think that the amendment would add anything to the Bill; it would actually make assessing capacity more confusing, from a legal perspective.
Sarah Olney
What I would say in reply to the first part of the hon. Member’s intervention is that there are plenty of opportunities for the person to change their mind—although I might slightly indelicately point out that there will eventually not be a further opportunity; that is the point of what we are trying to do—but that does not necessarily mean that the person has the capacity to make the right decision at each of those opportunities. That is what the doctors will need to assess.
I return to my earlier point: it is important that Parliament specify, by way of this amendment, precisely what it means by assessing capacity. In the context of all the evidence we heard that there is not necessarily a standardised approach across the medical profession, it is important that the standardised approach be specified in the legislation. Clause 3 is the appropriate place to specify it.
The other major point is that patients need to understand the process by which the assisted death will be enabled. The Bill states elsewhere that it will be by the ingestion of an “approved substance”. It is important that we understand exactly what that means, or what it might mean. We will doubtless get on to talking about the approved substance and the proper legislation around its use.
We did not speak much during the oral evidence sessions about the use of the approved substance, but it is important that people understand that any medical procedure can fail, including with an approved substance, and we do not know how long the substance will take to be effective. Nor do we know what the patient’s experience will be after taking the approved substance. It is important that they understand, to the extent that it is possible for a doctor to give them the information, what they are undertaking.
In his evidence, Professor House said:
“It is a striking feature of the Bill that informed consent is not really specified properly. The doctor is required to ask the person what they want to happen in the event of complications without having previously explained to them what all the complications might be…There is no standard informed consent form related to the Bill, for example—of the sort that you would expect to sign if you were having a serious intervention in the NHS.”––[Official Report, Terminally Ill Adults (End of Life) Private Member’s Bill Committee, 29 January 2025; c. 169, Q216.]
He said that informed consent was very underspecified in the Bill. The amendment could start to address that. It is important that people have the capacity to understand what they are undertaking—not just that they are choosing an assisted death, but all the potential attendant risks and complications.
I return to my opening point, which is that it is important that Parliament specify a standard by which mental capacity can be assessed in relation to this specific decision. I feel that I have made the point a number of times, but I will make it once more: we are not proposing to rewrite the Mental Capacity Act or tamper in any way with how it is currently used. We are merely setting a higher bar—a higher standard for how it should be applied in this particular case, because of the very specific nature of the decision that patients are being asked to make in this particular circumstance.
Naz Shah
I will pick up on some of the points to which my hon. Friend the Member for Stroud referred, given his expertise. We heard from three senior psychiatrists during the evidence sessions, who were very clear; I have already mentioned much of their evidence. The Royal College of Psychiatrists’ written evidence states:
“It is the RCPsych’s view that the MCA is not sufficient for the purposes of this Bill. Extensive consideration needs to be given to what an assessment of mental capacity should consist of for AD/AS prior to the passing of legislation and, indeed, whether a determination through such an assessment can be reliably arrived at in this novel context.”
It goes on to say that the capacity to end one’s life is “entirely different” from assessing for the capacity of deciding treatment.
The Bill moves us into new territory. We need a definition that meets the criteria of what we are assessing, which is to end one’s life. That has never been applied in this country. The Mental Capacity Act, as it stands, requires assessors to presume that someone has capacity until incapacity can be proven, as my hon. Friend the Member for Bexleyheath and Crayford referred to in moving amendment 322.
Dr Annabel Price, Professor Allan House and Professor Gareth Owen all expressed doubts about the use of the Mental Capacity Act to assess whether a person is in a fit state of mind to undertake assisted dying. Because there is nothing in the current medical assessment that requires careful explanation of these factors, there is a real worry that there will be no opportunity to change them. It is outside the experience of the Mental Capacity Act, the Court of Protection, the associated research and practitioners on the ground.
Professor Owen said:
“I have looked at mental capacity a lot in research, and there is no experience”.
The reference to the Mental Capacity Act in clause 3 puts us into an area where there is no experience of the central capacity issue under consideration. He said:
“It is very important that Parliament be clear-eyed about that.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 226, Q287.]
He further said that we are in “uncharted territory”, because the ideas in the Bill are very novel. That is the hub of the Bill: it requires assessors to assume capacity as a starting point. To make the Bill the safest in the world, that is not the yardstick that we should be applying, according to very senior psychiatrists across the country.
Alex Ruck Keene KC also provided evidence to the Committee. He set out some of the myths in a video. There are a few things in this for me. One is the article in The Telegraph, which senior psychiatrists alluded to, that suggested there was a shortage of specialist psychiatrists. We have already had a conversation about the shortage of judges, but we are now having a conversation about the shortage of psychiatrists. Should the measure remain in the Bill as it stands? I would like to understand from the Minister whether that is something that has been assessed, given that we do not have an impact assessment.
Alex Ruck Keene referred to the National Institute for Health and Care Research, which funded a number of research projects in 2022 under the umbrella topic of implementing the Mental Capacity Act in practice—the rationale being that
“The Mental Capacity Act…is designed to empower and protect people who may lack the mental capacity to make their own decisions about their support and treatment, ranging from everyday issues to more serious, life-changing decisions.”
Evidence has highlighted several aspects of the way that the assessments are being carried out that are not compliant with the Mental Capacity Act. If we already have issues with how the Act is being implemented in the everyday work of the NHS and psychiatrists, how many mistakes will be made if the Bill goes through as it is? How much potential is there for mistakes to be made when assessing the capacity of those who are most vulnerable?
The Care Quality Commission in its most recent “State of Care” report in October last year said:
“The Mental Capacity Act 2005 (MCA) directly affects the lives of millions of people. Everyone providing care to people over the age of 16 must be familiar with this vital piece of legislation, which introduced rights and protections for people who may lack mental capacity. A decade after the House of Lords report, we continue to find a lack of understanding of the MCA among providers.”
That is the most recent research, and it is telling us that we have not got this right.
The Mental Capacity Act was passed over 20 years ago in 2005, but is still not understood properly or being applied for the reasons it was supposed to be. If we have not got that right in 20 years, how can we as a Committee be assured that the legislation will be applied properly when it is applied to something that it has never been applied to before and that has not been tested? How can we say that we should be rejecting an amendment that would change that and raise the bar for people? Ultimately, this affects people who are vulnerable; I will come on to that in more detail in the next group of amendments.
That is a real concern, which is why I urge Committee members to support amendment 322 to get the safeguards right. We spent hours talking about capacity, but the amendments to clause 1 were not accepted. This amendment comes from experience, and I really appreciate the personal experience of my hon. Friend the Member for Bexleyheath and Crayford on this issue, because he speaks about the reality. We are not the experts, and we should be relying on the experts who give us their witness testimony.
Daniel Francis
In the evidence from Mencap and in large swathes of the written evidence, we have heard grave concerns from communities representing people with learning disabilities about how this legislation was enacted during covid, particularly with “do not resuscitate” notices. Evidence shows that people with learning disabilities were far more likely to have those placed on them. The written evidence we have suggests that that is due to a misinterpretation of the Mental Capacity Act or bias within the medical community. Can my hon. Friend comment on that?
Naz Shah
My hon. Friend makes a very valid point. Another issue that we have not got to yet, but that we will be looking at, is the doctors who do not want to take part in this process. We must consider whether there will be a bias; he is right to point that out. Will there be a subconscious bias towards helping people? My hon. Friend the Member for Stroud suggested earlier that doctors assist a person to reach a decision, according to the Mental Capacity Act. This is the crux of it for me: when a doctor is assisting a person in their best interests to come to a decision about treatment, for example, that is a different test from what we are testing here.
Lewis Atkinson (Sunderland Central) (Lab)
I share the concerns of my hon. Friend the Member for Bexleyheath and Crayford about the use of DNRs—what happened during covid to people, particularly those with disabilities, was a disgrace. Does my hon. Friend the Member for Bradford West accept that this is an entirely different situation, however, in that people must actively seek it, be tested multiple times, and express a wish for it? The situation with DNRs involved medical professionals making decisions on behalf of a patient without their input.
Naz Shah
Apologies. My hon. Friend is right that those were different situations, but I remind him of the evidence that we heard from Dr Jamilla, for example. I am glad that he reminded me of this point, because although what happened in covid was done under different circumstances—I agree that what happened with DNRs was a “disgrace”, in his words—that is where the trust in NHS providers was lost. That leads me on to my next point: where there is no trust, there is vulnerability, and that vulnerability, in turn, affects capacity.
That brings me to what Alex Ruck Keene said about vulnerability. If people feel—as they did during covid-19—that they have been DNR-ed and that, as some have said, “They’re going to kill us off!”, then the vulnerability directly impacts on their capacity. I accept that, as my hon. Friend says, these are different situations, but the argument is strong and speaks to supporting this amendment.
There is a myth that mental capacity is well understood, but we have gone through that—there are a lot of myths about mental capacity. The reason that mental capacity is always difficult to assess, according to Alex Ruck Keene, is because 85% of capacity determinations by those who actually understand the law are relatively straightforward—that concurs with the point of my hon. Friend the Member for Stroud—with difficulty arising usually because of not having enough time or not listening to the person. Some research was conducted into the experience of liaison psychiatrists through an interview study across three jurisdictions, which concluded that there are four key sources of difficulty in capacity assessment, spanning both clinical and ethical domains.
Those four sources included, first, a difficulty determining whether the decision is the patient’s own or driven by illness. That is important because we are talking about people who are terminally ill, so their decision-making processes may be impacted because of that, or because there is a vulnerability—either could be possible. The 15% of mental capacity determinations that are difficult include for such people. There may also be, secondly, a difficulty in applying ethical principles or, thirdly, a difficulty in avoiding personal bias. Again, that speaks to the point of my hon. Friend the Member for Bexleyheath and Crayford—if doctors are already signed up to this Bill and believe in it, will they have a personal bias? A lot of doctors and psychiatrists—according to the last article I read—are saying that they do not agree with it.
Rebecca Paul (Reigate) (Con)
I rise to speak to my amendment 398. I recognise that much debate about capacity has already taken place, so I will do my best not to be too repetitive, but it is an important topic and I want to cover a few things.
Fundamentally, I consider the bar for the capacity to make a decision to seek an assisted death to be far too low if, as we have already discussed, the approach currently proposed in the Bill is adopted. The Committee has received powerful written evidence that the Mental Capacity Act, as it stands, is not suitable for assisted dying. The Royal College of Psychiatrists says in its written evidence:
“It is the RCPsych’s view that the MCA is not sufficient for the purposes of this Bill.”
The former president of the Royal College of Psychiatrists, Baroness Hollins, says:
“The Mental Capacity Act has proved very difficult to implement and doctors have not been found to be good judges of capacity.”
The eating disorders expert Chelsea Roff says:
“The MCA is not fit for purpose for determinations of capacity in life-ending decisions.”
I do not think it is contentious to say that there should be a higher standard for ending one’s own life than for other courses of action. Baroness Hale has called the Mental Capacity Act threshold “not a demanding one.” The Royal College of Psychiatrists says in its written evidence:
“While we are of the view that a person’s capacity to decide treatment can be reliably assessed, an assessment of a person’s mental capacity to decide to end their own life is an entirely different and more complex determination requiring a higher level of understanding.”
Even if the Mental Capacity Act is working well in some other contexts, it does not necessarily translate well to assisted dying. Professor Gareth Owen told the Committee in oral evidence that although the Mental Capacity Act is quite reliable in current practice,
“in areas of decision making where the decision itself is unsettled or conceptually much more profound or novel—I would suggest that the decision to end one’s own life has those characteristics—you cannot expect there to be such levels of reliability.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 239, Q303.]
The Mental Capacity Act definition of capacity was not created with such a monumental decision with respect to assisted dying in mind. Although I note Chris Whitty’s recommendation that it is the starting point, I do not think it can be the end point. Further provisions are needed to ensure that it is fit for purpose, given the significance of the decision being made. Professor Owen said:
“I have looked at mental capacity a lot in research, and there is no experience of the decision to end one’s own life. It is outside the experience of the Mental Capacity Act, the Court of Protection, the associated research and practitioners on the ground. The reference to the Mental Capacity Act in clause 3 puts you into an area where there is no experience of the central capacity question under consideration. It is very important that Parliament be clear-eyed about that.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 226, Q287.]
Dr Sarah Hooper, a retired oncologist, says that
“the patient in question may undoubtedly have ‘capacity’ for most important decisions. However, in the early days after a cancer diagnosis their ability to make clear judgements is nevertheless likely to be impacted. This kind of decision (for assisted suicide), once acted upon, is plainly irreversible. It is a very bad time to make that kind of decision.”
It is true that the Mental Capacity Act is used for decisions to stop life-sustaining treatment, but, as Professor Owen said, we should not simply equate that with assisted dying. As he pointed out:
“One is a refusal; one is a request. One is traditionally considered to be about bodily integrity—it is the so-called shield of the person, or the patient, against the intervention on the body that is being made by the medical profession. You are giving the patient an important right, which is a shield-like right. That contrasts with a request for assisted dying, which is a request. You are involving other people in an act that is an act of ending one’s life. That is not something that the medical profession has been comfortable with, going back thousands of years.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 236, Q288.]
I also draw attention to a great deal of written evidence making the point that the current Mental Capacity Act is not as well understood by medical practitioners as we hope or expect. Alexander Elphinston, a retired solicitor, says,
“from my experience doctors and other medical practitioners often applied the test of mental (in)capacity incorrectly.”
Victoria Wheatley, a palliative medicine consultant, says,
“I have observed a tendency to overestimate a person’s mental capacity in the absence of obvious features to the contrary.”
Alan Thomas, a professor of old age psychiatry at Newcastle University, says:
“The preferences of the assessor bias the capacity decision towards the assessor’s preference.”
I will move on to the specific issues with the current definition of people who lack capacity under the Mental Capacity Act when applied to assisted dying, all of which my amendment 398 attempts to address. Part of my amendment does exactly the same as amendment 322, tabled and already eloquently spoken to by the hon. Member for Bexleyheath and Crayford, so I will be brief on those overlapping bits.
Under the Mental Capacity Act, there is a starting presumption of capacity. That is too lax a standard, as the Royal College of Psychiatrists says in written evidence. I quote:
“The presumption of capacity may be problematic in the context”
of assisted dying, given that the consequence would be the person’s death. This is literally a matter of life and death, and the presumption of capacity must not apply; the work must be done to assess capacity properly and thoroughly. Professor Preston said during the evidence session:
“I think the aim is to have that bit of extra concern, so that we do not presume capacity, but instead almost presume that there is not capacity.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 241, Q307.]
I think those are wise words, and my amendment and amendment 322 seek to give that protection.
Both amendments also disapply section 1(3) of the Mental Capacity Act on helping a person to make a decision. The hon. Member for Bexleyheath and Crayford has already made his point powerfully about that, so I will not add anything further.
There are some differences where my amendment 398 goes further than amendment 322. First, given the uniqueness and irreversibility of the decision, there should also be a higher threshold of probability. As it stands, a person should be treated as having capacity if that is more likely than not, which is sometimes referred to as the “51% sure” approach. It would be much safer if doctors and judges had to establish beyond reasonable doubt that an applicant has capacity, given the significance of the decision. In my view, 51% sure is just not good enough for such a monumental decision, and amending this part of the Bill would ensure a more rigorous and comprehensive assessment.
Secondly—for me, this is one of the biggest issues with the current approach—the Mental Capacity Act requires an impairment of, or a disturbance to, the mind or brain for someone to be considered not to have capacity, irrespective of whether they can make a decision. Under the Bill currently, even if someone cannot understand, retain or use the information to make a decision—they cannot communicate that decision—they will still be deemed capacitous in the absence of an impairment, or a disturbance, of the mind or brain. In the real world, a doctor could assess a patient who gives the impression of being confused, illogical, erratic or inconsistent—everything about them could scream that they are not in a good place to make the decision—but they will still be considered to have capacity if there is no identifiable impairment of, or disturbance in, the function of the mind or brain at that point in time. That potentially puts those with depression, anxiety, learning disabilities or eating disorders, or even those in physical pain, in danger of being considered capacitous.
In oral evidence, Professor Alex Ruck Keene said,
“If I doubt that you have capacity to make the decision to take your own life, or end your life, but I cannot prove it, is it logical or are we required to proceed on the basis that you do?...In other words, I think you cannot understand the information, but I cannot prove the reason that you cannot understand it is that you have an impairment or disturbance.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 90, Q120.]
According to his written evidence to the Committee, this means that someone could be approved for assisted dying even if they did not understand the relevant information, as long as they do not have an identifiable impairment of, or disturbance in, the mind or brain. He wrote,
“the Committee may well feel that it would be problematic that such a person should be considered to be eligible for the receipt of assistance in dying.”
In a letter to the hon. Member for Richmond Park, Professor Alex Ruck Keene KC said,
“no matter how intensive the scrutiny of the person’s capacity, this would not address the issue of the situation where the person appears not to be able to understand, retain, use and weigh the relevant information but that is not caused by an impairment of, or disturbance in, the functioning of their mind or brain.”
That is why my amendment seeks to remove this diagnostic element, so that section 2(1) of the Mental Capacity Act for the purposes of this Bill only would read as,
“a person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter.”
That would provide better protections for this life and death decision, and I hope it addresses the issue raised so powerfully by Professor Alex Ruck Keene KC.
As I close, I would like to make reference to amendment 49, tabled by my hon. Friend the Member for Runnymede and Weybridge, which sets out starkly the deficiencies of the current capacity test if it remains unamended for the purposes of this Bill. If autonomy is what counts, and we are using the Mental Capacity Act as gatekeeper for assisted death, then the Bill in its current form means that: a person is assumed to have a capacity as a starting point; a clinician only needs to be just over 50% sure that a person has capacity; unwise decision making is not taken into account in determining capacity; and supported decision making is acceptable—for example, for those with learning disabilities.
I ask the Committee members whether they are comfortable with that. If not, then as a minimum, amendment 322 should be accepted, but ideally my amendment 398 should also be, as it goes even further to increase the threshold for capacity and it addresses the significant issue with the diagnostic leg of the test. I am pleased to say that Baroness Finlay, who established and chaired the National Mental Capacity Forum, supports my amendment. Unlike the current drafting of the Bill, my amendment requires that a person is not assumed to have capacity in the first instance. It requires capacity to be proven beyond reasonable doubt, that unwise decision making is considered in assessing, and that a person is not helped to make a decision. I hope the Committee will support it.
Danny Kruger
I am pleased to follow my hon. Friend the Member for Reigate, who set out with incredible clarity the challenges here and the opportunity we have to build on the Mental Capacity Act, and to fulfil its purposes and the purposes of the Bill to ensure that capacity is properly assessed. I will speak to all the amendments in the group very briefly; I certainly will not repeat material points that have been made already. To clarify, I do not propose to push amendment 49 in the name of my hon. Friend the Member for Runnymede and Weybridge to a vote, although I will speak to it briefly. I hope we will vote on the other amendments.
Dr Opher
On tightening capacity assessments, which is what the amendment is trying to do, I would point out that there are a number of amendments coming up that would mandate training for doctors who are registered to assess capacity—for example, amendment 186. In addition, amendment 6 would mandate psychiatric referral if there was any doubt of capacity. Does that not satisfy the hon. Member?
Danny Kruger
It pleases me but it does not satisfy me. I am encouraged by it, but I am not fully satisfied. Obviously, it is insufficient. The hon. Gentleman and the hon. Member for Spen Valley put great faith in the training that we are going to introduce. Well, I hope they are right. Let us certainly do as much training as we can— likewise, let us get as much data as we can—but the provision set out is not sufficient, not least because the training will be in the application of the Mental Capacity Act, which we are saying, even if properly applied, has all sorts of problems with it, as my hon. Friend the Member for Reigate explained.
Yes to training and yes to the option of the referral—that should be mandatory, and I think there is a proposal to effect that. Every additional safeguard is welcome. It goes back to my point about whether we are being thorough or simplistic. I am not sure. If I think there are four assessments, but the hon. Member for Stroud thinks there are eight, does that not fail Chris Whitty’s test of being simple? If eight is in fact thorough, would nine not be even more thorough? The suggestion that we have hit it at the perfect sweet spot and that to veer one side is to introduce all sorts of bureaucratic hurdles seems unrealistic. Surely we can apply a little more rigour to this exercise.
Lewis Atkinson
I know that we have interacted before about our fundamental difference on the ventilator test: someone saying, “I want to die, please turn off my ventilator” as opposed to, “I want to die, please let me take this substance.” Although we may have a fundamental disagreement on whether those things are the same or different, if he still thinks it is appropriate for the Mental Capacity Act to be used as a one-off test, with no other safeguards, for turning off a ventilator, then why is it appropriate in that situation but not when tested multiple times in this instance?
Danny Kruger
I recognise that this is a vital point; I am not surprised that we keep returning to this important distinction. I do think that there is a vital distinction between accepting treatment and declining a treatment. In fact, the treatment proposed here is not a treatment at all—the British Medical Association specifies that it is not a medical treatment. The termination of life deliberately does not apply to a particular condition, whereas a ventilator, or any treatment that one might decline or withdraw, is specific to a particular condition or illness. There is a difference in purpose, even if the effect—which is death—is the same.
To the hon. Member’s point on whether the MCA is appropriate in cases of withdrawal of treatment; well, there we do seem to have a substantial body of clinical practice over many years, to which I am not aware of many objections. My non-expert view is that it is probably appropriate to continue with the MCA in those cases. I do not have an objection there and I am certainly not making that argument. It may well be that it is appropriate, and I am sure we will constantly review the applicability of that particular test in those circumstances. It might well be that some of the problems that I am identifying with the proposed law may also apply in cases of withdrawal of treatment—but I am not aware of that, because I do think they are substantially different. Even if it were perfectly acceptable to apply the MCA in cases of withdrawal of treatment, that does not mean it is appropriate in this case, because they are fundamentally different scenarios. I do not detect that I have satisfied the hon. Member, but it is always good to have the exchange.
I will conclude my challenge to the suggestion that the MCA is universally understood and properly applied. The Court of Protection case of Patricia, a patient with anorexia nervosa, has been referred to a number of times in the course of our debate. We heard evidence from a group of anorexia sufferers who wrote to the Committee to say:
“The judge in the Court of Protection case of Patricia…stated that he had changed his mind several times while considering the evidence. He then came to a different view on capacity from the treatment team. This single case exemplifies how complex the processes described under Clauses 7, 8 and 12 of the Bill in relation to assessment of capacity are likely to be”.
We are not talking about a straightforward process. It is clear from all the evidence we have had that there is a real problem with the way that the MCA would apply.
I want to make a rather obvious point, which is that when the MCA was debated and passed 20 years ago, assisted dying, or assisted suicide, was not on the table; it was not part of those considerations, as far as I am aware. It turns out that Dignity in Dying was on the case back in those days, although I think it was still called the Voluntary Euthanasia Society then. That group was conscious of what would come—I do not think that others were—and I detect that it is quite pleased now with the influence applied then to ensure that the presumption of capacity would be very useful one day when it came to passing an assisted dying law. It was not the intention of the House of Commons or of the Committee that considered that Bill that in fact they were establishing a test that would be applied in the case of assisting suicide and changing the terms of the Suicide Act. I am sure that if that had been the case, it would have been commented on, and I daresay the Mental Capacity Act would not be in its current form, or there would have been some addendum to that effect.
My hon. Friend the Member for Reigate referred to the very powerful evidence from lawyers, Baroness Hale and the Royal College of Psychiatrists about the challenge here. I want to quickly say, in support of amendment 322 in the name of the hon. Member for Bexleyheath and Crayford, that my hon. Friend the Member for Reigate made a powerful argument about impairment; it is striking that the MCA only applies when there are cases of impairment of, or disturbance in, the functioning of the mind or brain—I will not repeat the point she made, but I urge Members to reflect on it.
I will quote Ruth Hughes, a barrister specialising in mental capacity law and inheritance. This refers back to the point that my hon. Friend the Member for Reigate and I discussed in an earlier sitting about the clear opportunity that the Bill affords people to seek an assisted death for the sole purpose of saving their family money. Ruth Hughes says:
“If the…Bill is passed, then this will lead to some of the most vulnerable people dying for others’ financial gain. That is certain…Although in general I would, of course, accept the importance of the presumption of capacity, in relation to assisted dying, I consider that, the burden of proof for capacity should be reversed so that it is necessary to establish capacity to decide to die positively.”
Amendment 322 is tabled for that very obvious reason: there is a clear financial advantage for family members, and, I am afraid to say, there are many other distressing motivations that people might have that are not intended by the Bill’s promoter, the hon. Member for Spen Valley. It feels absolutely appropriate that we reverse the burden and have a much higher test of eligibility than that afforded by the Mental Capacity Act.
I want to make another point, although I do not know how hon. Members will feel about it because a lot of people do not accept that we are talking about suicide, even though it is in the terms in the Bill that we are amending the Suicide Act. The assumption of capacity in somebody taking their own life is what is proposed if we adopt clause 3: we are proposing that somebody has capacity if they end their own life. That implies directly that somebody who is standing on a window ledge or a bridge, about to commit suicide, is assumed to have capacity and to be making a rational decision, which other people should support. I say that directly, because there is a direct read-across with the whole topic of suicide prevention, which obviously we all strongly believe in. How can we say that somebody who is about to take their own life, unassisted, does not have capacity and is not making a settled and informed wish? In which case, why should we stop them or try to wrestle them back from the edge?
Tom Gordon (Harrogate and Knaresborough) (LD)
When people are in what is often termed a “crisis”, that would indicate that they are not in a situation where they have capacity. I do not see how the hon. Gentleman can think that it is reasonable to make a comparison between these two things; they are entirely different, and I am sure everyone here would broadly agree with that—I think, on this one, he is sort of on his own. Would the hon. Gentleman be able to offer any further insight into why he thinks that two wildly different situations are analogous—one is in a medical context where people have all the safeguards, and that layer of security and checking, and the other is someone who might be doing something in a moment of desperation?
Danny Kruger
The connection is explicitly in terms of the Bill. The Bill disapplies section 2 of the Suicide Act, which makes it illegal to assist somebody to commit suicide. It says that that section no longer applies. This Bill assists people to take their own life—I will not use the word “suicide” if people do not like it. There are other eligibility criteria: I totally acknowledge the hon. Member for Harrogate and Knaresborough pointing out that someone has to have a diagnosis of terminal illness, but that is not the point I am making. I am making the point that, under clause 3, we are saying that somebody who wants to take their own life has capacity, according to the very low bar of having a settled and informed wish. We are assuming capacity in the person who wants to end their own life. I suggest that that presents a real challenge to our national suicide prevention strategy—I will leave that point there, but I welcome any challenges to it.
Liz Saville Roberts (Dwyfor Meirionnydd) (PC)
I question whether the hon. Gentleman is making a false equivalence here in the very title of this Bill relating to terminally ill adults.
Danny Kruger
There are huge challenges around the definition of terminal illness, as we have already acknowledged—but if the right hon. Lady thinks that somebody who is terminally ill should be allowed to jump off a bridge or out of a window without anybody saying, “Wrestle them back,” she should say so. We think that, whether someone has capacity or is in their right mind or not, they should not end their own life. That is the settled view of this country. That is what the law determines. Currently, it is illegal to help someone to do that. We are proposing to change that, to enable people to help somebody to do that in a medical setting.
The implication of clause 3 is very clear: if one has a settled wish, ending one’s own life is something that we regard as acceptable. It will be very difficult to apply the principles of national suicide prevention when we have acknowledged that suicidal people have capacity. I will leave that point—it is not receiving a great echo of affirmation—but I have not heard any objection to it, other than a lot of head shaking.
Jack Abbott (Ipswich) (Lab/Co-op)
Upcoming amendment 339 to clause 4 addresses that specific point. The hon. Gentleman has been asked this a number of times today, but would he be satisfied if that amendment was passed?
Jack Abbott
Essentially, the amendment would require that if a person is autistic or has a learning disability, they must be given accessible information and sufficient time to consider it. Additionally, there must be at least either a supporter or an independent advocate there. That amendment was tabled by my hon. Friend the Member for Bexleyheath and Crayford and will be discussed later.
Danny Kruger
I would indeed support that amendment; it would go a long way to addressing the concerns that we have here. When we discuss clause 4, I will come on to some suggestions for how we can make sure that people with learning disabilities are properly supported, particularly people with Down’s syndrome.
To finish, I will speak to amendment 50, also tabled by my hon. Friend the Member for Runnymede and Weybridge. If we are going to proceed with the MCA, we need to have it on the face of the Bill, to ensure standardisation —hon. Members have confidently asserted that it happens anyway, although the evidence we have been presented with demonstrates that it does not in all cases. Let us be much more explicit about the requirements that are needed. We should specify the minimum of what needs to be understood for capacity, including understanding the likely process of all treatment options, including non-treatment, and prognostic uncertainty. It is not acceptable, in my view, to have all of that worked out later by clinicians. Parliament must clearly say at this stage what is important.
While Members are looking at the quite extensive terms of amendment 50, it would be good to know what in that list they would object to and why any of it should not be included. It does not change the Mental Capacity Act; it preserves the integrity of the Act. It simply specifies more precisely and gives clear guidance to doctors to ensure that they do the best job they can. Lastly, it states that the patient must have full understanding of the consequences of
“requesting assistance in ending their own life”.
That includes the potential for medical complications at the end. That is a point that has been touched on a little in debate, but I will quickly say a word on that.
It is very important, in my view, that we are clear about what the patient should do, what the doctor should do, what the patient is entitled to do and what the doctor will do, in the event of complications at the end. This is not an abstract question. The Association for Palliative Medicine of Great Britain and Ireland gave evidence to us, stating:
“It is important to highlight the lack of scientific evidence for the effectiveness, failure rates or complications of any ‘approved substance’”,
and pointing out that the proposals in the Bill fall quite short of
“the usual practice of approving treatments in the UK, which mandates careful assessment of drugs and their combinations.”
We do not know how that will be applied in this case. It is a point for later in the Bill how we consider which drugs should be used, but it is relevant at this stage to insist that patients are made fully aware of the drugs that will be used and their potential complications. We often refer to Oregon as an inspiration for the Bill, and the law in Oregon requires the applicant to be fully informed by the attending physician of the
“potential risks associated with taking the medication to be prescribed”.
It might be worth considering that.
Professor House, in evidence to us, pointed out that informed consent—which is obviously a principle of the Bill—
“is not really specified properly. The doctor is required to ask the person what they want to happen in the event of complications without having previously explained to them what all the complications might be.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 169, Q216.]
So I think it is important that we specify that those complications are explained to them clearly at the outset.
This is not an abstract point. Sarah Wootton, chief executive of Dignity in Dying—my least favourite organisation—wrote in her book “Last Rights”:
“We have to move away from idealised, sanitised, nursery-rhyme accounts of what death can be…towards truthful, no bullshit, plain-spoken explanations of what could happen.”
I do not think Dignity in Dying applied that test when putting those disgraceful adverts in the tube, showing people dancing round their kitchens anticipating their lovely death, but she is right that we need to be very clear about what actual death can be like with these drugs.
I want to end with a reference to the work of Dr Joel Zivot, an American academic. The only proper study that can be done into people who have been given lethal drugs to die, using any of the drugs that will be used in this case, is of people who have been executed in the United States. Of course it is not possible to do many studies into the after-effects on people who have had an assisted death, but there have been some studies of people on death row. Dr Zivot’s point is that there is real evidence of what looked like trauma, distress and pain suffered by people as they died. Even if they themselves look peaceful—because often the first drug that is administered is a paralytic, so they are rendered immobile, and they may look very peaceful—it is evident that in some cases there is real distress going on beneath that peaceful exterior. We need to do a lot more work on understanding which drugs would be used and what their effects would be, and that needs to be properly explained to patients. All of that would be captured in amendment 50.
Dr Opher
We are talking about a whole different area now, but I would say that, as a medical professional, if someone is gaining consent to a treatment it is in their code of practice under the General Medical Council that they explain all these things. We do not need to write it into the Act; that is already in existence. A more general point is that there is a lot of stuff already in the public domain on doctors’ behaviour that does not need to be restated in the Bill. The more we write, the more likely it is that it will be less safe for patients. I would keep it very simple.
Danny Kruger
I really want someone to explain this point to me: how can it make it more unsafe for patients to state the safeguards explicitly? How can it possibly make it harder, or more dangerous, if we specify what—as the hon. Gentleman said—is good practice currently, which the best doctors already do? I greatly respect him and his medical practice, but is he really saying that every doctor conforms perfectly to the GMC guidance? There are obviously clear problems with the way in which some doctors operate, and this is uncharted territory. Surely for the sake of doctors, as well as patients, it would be appropriate to specify explicitly how they should conduct these assessments, what communications they should make and what patients should be properly informed of. I cannot see how that makes it more dangerous.
Kim Leadbeater
I want to concur briefly with my hon. Friend the Member for Stroud; I have done a lot of research into this, believe me. We have the GMC, the British Medical Association and organisations that represent medical practitioners. They have very lengthy codes of conduct and behaviour codes. What we cannot do—and I have tried—is to include all that in the Bill, and we have to be cognisant of that in some of the amendments that we make.
Danny Kruger
I challenge the hon. Lady, and I would welcome her response to this: we clearly can specify some things that can be done, which is what my hon. Friend the Member for Runnymede and Weybridge has done in half a page with amendment 50, which clarifies explicitly what information the patient should receive and what they should properly understand. How does including this list of pieces of information make the Bill more dangerous for patients?
Kim Leadbeater
I am not saying that this amendment would make it more dangerous, but it would overcomplicate things. That is the point that my hon. Friend the Member for Stroud was making. We need to have a very clear piece of good law, and I think the Bill already covers the points in amendment 50 and others, which I fully appreciate have been put forward in good faith. It is the clarity of the law that sometimes has to be the focus. I absolutely concur with the hon. Member for East Wiltshire on safeguards, but unfortunately I feel that we will probably never get to a point with the Bill where he is happy with the level of safeguards, and maybe he is prepared to acknowledge that.
Danny Kruger
It is unlikely that I would ever vote for an assisted dying law but, if we are going to have one, I want to make it as safe as possible, which we all want. On those terms, in the spirit of a Bill that is going to pass, why not include these specific pieces of information? The hon. Lady says that, while it would not make the Bill more dangerous, it would overcomplicate it. Again, how does it overcomplicate it to add a few clauses specifying information that must be clearly communicated?
Kit Malthouse (North West Hampshire) (Con)
Amendment 50 requires that whoever is medically assessing capacity is also able to understand the legal implications. The final point of the amendment says that they have to understand what the insurance implications are likely to be, which would mean that they would have to inquire into the individual’s financial circumstances. They possibly might need to understand what provision they have made for their family.
It also references what the designation of death is likely to be, which again requires them to decide there and then what they will write on the death certificate, when it happens. As the hon. Member for Stroud said, much of what is in amendment 50 is already either in the Bill or implied by it. As Ministers have said before, we have a duty to the statute book not to embroider it to the extent that it becomes overcomplicated and unworkable. I do not think that any of us would necessarily argue with the points in amendment 50, other than perhaps the last one about legal expertise, but clarity leads to certainty, which leads to safety.
Danny Kruger
By that logic, the safest, clearest Bill would be one that simply authorised an assisted death without any of these checks whatsoever. My right hon. Friend made the point that this amendment requires the doctor to discuss with a patient all the implications of their death. That is perfectly appropriate—in fact, if that is not being done at some stage in the process, and if that is not clear in the Bill, it absolutely should be. Otherwise, how can we be sure that the person is making a settled, informed decision, with all considerations taken on board?
I am sorry if that imposes a little extra burden on the doctor. One of the great challenges of the Bill is that, if we are to do it properly and genuinely make it a Bill that is strong in its safeguards, a whole lot of people will have to do a whole lot of work. There will be a huge demand on all parts of the public sector. This is required, I am afraid. I do not accept that the content of the amendment is either already in the Bill or implied in it. There might be some remote piece of GMC guidance that touches on this, which we would hope is properly applied, and I appreciate the point about embroidery. Nevertheless, this is not embroidery; this is upholstery—it is necessary for the Bill to be strong.
Sarah Olney
I want to pick up on a point that the hon. Member made before the previous intervention about the rights of the doctors themselves. This is an important point that we do not consider enough. We talk a lot about the rights of the patient, quite rightly, but this Bill will provide the means by which another person can get involved in someone’s death. It is really important that the legislation protects the rights of that person—the doctor involved—as well. Does he agree that providing greater clarity about the standard required to assess capacity will help the doctor to protect their own rights, perhaps in response to legal challenge from families, and that it is important that we consider the rights of the doctor as well as the patient?
Danny Kruger
The hon. Lady is absolutely right. It is an interesting irony of the Bill that it is presented as the free choice of individuals, but actually it imposes all sorts of obligations and repercussions on other people—the very term “assisted” conveys that. Many other people will be affected by the decision to take an assisted death. She is right that it would be very helpful for the doctors to be confident that they have done their job properly because they have a clear list of communications they are expected to make.
My understanding is that doctors are indemnified against legal challenge in consequence of decisions they make around this; that is an interesting point and one that I am uncomfortable with, but we will come to that later in the Bill. Leaving lawsuits out of it, from the point of view of the doctor’s professional conduct and their peace of mind, it would be very helpful for them to have it clearly specified what information they are required to convey.
I am grateful for Members’ interventions, and I appreciate the good faith and good sense that has been spoken, but I have not yet heard any reason for objecting to this amendment, other than the possible question of its being otiose and not necessary. That is not a sufficient reason to object to an amendment. We should not be objecting simply on drafting grounds. There can be tidying-up exercises later if there is repetition. I have not heard objections to the content of the amendment, and I would very much welcome Members’ support.
Danny Kruger
Exactly. A few more words of clarification should not be regarded as burdening the Bill or creating bureaucratic obstacles for doctors and patients; the amendment actually specifies more explicitly what is going on. It is almost akin to the debate we had on amendment 181 and those dangerous words “for the avoidance of doubt”; that is essentially what this amendment does, but it goes further, because it imposes clearer obligations on doctors to do their job properly.
Jake Richards (Rother Valley) (Lab)
Much has been covered today, and the issue of capacity was debated at length when the Committee considered clause 1, but I do have some observations.
I am sympathetic to the assertion that there should be changes to presumption and burden. Those are things that I have considered and spoken about with the promoter of the Bill and, outside the Committee, with experts who gave evidence to the Committee. I have spoken about them publicly as well; I am very sympathetic.
At the heart of this, we have two options. We could change the burden and presumption in the Mental Capacity Act 2005 for the purposes of assisted dying, rewriting 20 years of case law and medical practice. There is certainly some value to that, but that would be a radical departure from current medical practice, and there are other concerns. The alternative is to put in place rigorous processes and training around the Mental Capacity Act to ensure that it is implemented properly. After some reflection, I err on the side of the latter option, for a number of reasons.
First, I accept that there is debate among psychiatrists about this issue. We heard evidence from some who deem the Act not to be suitable for this new realm—I accept that we are entering new grounds, and I will come back to that point—but many psychiatrists and lawyers working in this area would deem it uncomfortable and unnecessary to depart from the Act.
Secondly, there is an oddity in changing presumption. There is an oddity in someone having to prove that they have capacity to fulfil their own desire. That oddity is one of the reasons that the Act is drafted as it is. It is partly—there are two sides to this coin—to ensure that there is no discrimination, partly to comply with the Human Rights Act 1998 and human rights more generally, and partly to ensure that we do not end up in a medical situation that is patrician, whereby medical doctors take an intrusive view of capacity rather than meeting the individual as they are.
Thirdly, the Bill, when amended—I will come on to the amendments that give me some comfort—will offer more safeguards than the Mental Capacity Act. Amendment 5 to clause 9(3) would ensure a further level of assessment. My hon. Friend the Member for Spen Valley has indicated that she will support that important amendment, as have all members of the Committee. If there is any doubt, there will be a further assessment by a psychiatrist. That goes some way to reassuring me that it is not necessary to rip up the burden or change the presumption in this area.
I want to make an observation about burden of proof, presumption and the nature of the assessment. Professor Whitty clarified his evidence. It is right that the burden and the presumption do not change, but of course the nature of the assessment rightly changes according to the circumstances. Every assessment of capacity is somewhat different, which is why amendment 50 is too prescriptive, in my view.
Of course, we can consider incredibly serious cases involving deprivation of liberty or the ability to conduct litigation. I have worked with parents whose children are being removed and looked at whether they have the capacity to make decisions about how they present their case. It is very dangerous to compare the severity and the profound nature of different circumstances, but let us not pretend that the Mental Capacity Act is not used to assess the most complex issues of capacity every day.
I am very sympathetic to amendment 50. I have met the hon. Member for Runnymede and Weybridge, who tabled it, and the hon. Member for Solihull West and Shirley to discuss it, but I stress that such a prescriptive provision is not appropriate for primary legislation when we are entering new ground. I accept, as hon. Members with different views have said, that we are entering new territory and that this is difficult. I accept that psychiatrists and medical practitioners will have to think long and hard about the nature of the capacity assessments, especially under clause 9(3), when that is activated. That work will have to be done. It has been set out in primary legislation through some of the training clauses, which have already been referred to.
There is no doubt that there will be a lot of work and consideration, but I do not deem it appropriate to have a clause drafted by one psychiatrist, albeit an undoubtedly esteemed and experienced one: the hon. Member for Runnymede and Weybridge, who tabled the amendment. Rather, the work needs to be done as the Bill is implemented over a two-year period. It needs to be done as part of a full consultation with psychiatrists, once the Bill has been passed, and that should be set out in guidance. That is what would usually happen with deprivation of liberty. I do not think it appropriate for primary legislation to set out the factors for a capacity assessment.
Jake Richards
We need to be careful when we say that the Mental Capacity Act is misunderstood, full stop. Let us be clear—
Jake Richards