Terminally Ill Adults (End of Life) Bill
Friday 29th November 2024
(2 months, 1 week ago)
Commons ChamberRead Full debate Terminally 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
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
(2 weeks, 1 day ago)
Public Bill CommitteesRead Full debate Terminally 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
(2 weeks ago)
Commons ChamberRead Full debate Terminally 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
(1 week, 1 day ago)
Public Bill CommitteesRead Full debate Terminally 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 (Third sitting)
Tuesday 28th January 2025
(1 week, 1 day ago)
Public Bill CommitteesRead Full debate Terminally 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
Q
Dr Clarke: I am Dr Rachel Clarke. I am a hospital palliative care doctor with a decade practising in a whole range of settings: the community, hospices, small district general hospitals and a large teaching hospital. I am also a former journalist and a current author who has written four best-selling books for the public about medicine in the UK. I campaign very actively for greater awareness amongst the public around the topic of death and dying. I have extensive experience teaching communication skills to medical students, junior doctors, nurses and other members of multidisciplinary teams. My personal view on assisted dying is that I am not opposed in principle, but I have significant concerns around the issues of consent and capacity.
James Sanderson: Good afternoon. My name is James Sanderson. I am the chief executive of Sue Ryder, a leading palliative and end-of-life care organisation, which also supports people living with grief and bereavement. I have recently joined Sue Ryder and have been there for six months. I was previously in NHS England as director of community health services, personalised care and palliative and end-of-life care. I am also the former chief executive of the Independent Living Fund.
Sue Ryder, as an organisation, has adopted a neutral position in regard to the assisted dying Bill. I am here today to provide information regarding the provision of palliative and end-of-life care and some of our concerns in relation to how the system is currently operating across the country.
Dr Cox: I am Sarah Cox. I am a consultant in palliative medicine. I have been in palliative care for over 30 years. I am also the president of the Association for Palliative Medicine of Great Britain and Ireland. It is a member organisation with over 1,400 members. Naturally, there are different views amongst our membership, but in polls over the last 10 years, the results show that about 80% of our members are opposed to the legalisation of assisted dying and about 5% are in favour. The reason for this opposition are many, but include the inadequate current provision of palliative care, which does not offer patients a choice, concerns about how the safeguards would be enacted in this Bill, and concerns about the impact of assisted dying on palliative care resources, funding and the workforce.
Dr Ahmedzai: Thank you very much for inviting me here today. My name is Sam Ahmedzai. I am a retired professor—a professor emeritus—of palliative medicine from the University of Sheffield. I have—not boasting, Sarah—39 years of experience in the speciality. I was one of the people involved in setting up the new speciality of palliative medicine back in the 1980s. My experience is of working in a hospice for nine years, and then 20 years as a consultant and professor at the University of Sheffield.
I am a clinical academic, so I very much take an evidence-based view of healthcare, and palliative care is just another kind of healthcare. For instance, I chaired the National Institute for Health and Care Excellence guidance on the last days of life. I was also clinical adviser to the NICE guidance NG142 on service delivery in the last year of life. I come from that background. I have experience of lecturing and working around the world as a visiting academic. For 10 years, I was the visiting Spinoza professor at the University of Amsterdam, where I lectured people who were delivering euthanasia in Amsterdam about what they could do through palliative medicine as well. That is where I am coming from. I am a supporter of changing the law, and I commend the Bill. It is the safest I have seen in the world.
The Chair
Members should indicate if they wish to ask a question and who they wish to ask.
Naz Shah (Bradford West) (Lab)
Q
James Sanderson: There are clearly gaps in the provision of palliative care. However, to start with a positive, I think that the provision of palliative care in this country is exceptional. We are leaders in many ways across the world in the way in which we support people who are facing those challenges in their lives. However, our findings in relation to palliative care show that, although about 90% of the population could benefit from palliative care, only 50% of people are currently able to access it.
One of our concerns is that the provision of palliative care across the country is quite patchy at the moment. I do not think there has been a thorough assessment of the level of palliative care in place—not just the provision of palliative care specifically, but how other services, such as district nursing services, interact with palliative care. In some areas, the provision of district nursing services for general care and support for people who may be at the end of their life is very strong and in other areas it is not so strong.
At Sue Ryder, there is one thing that we are really concerned about. In our survey, 77% of respondents said that they were concerned that the lack of availability of palliative care might enable more people to consider an assisted death than otherwise would. That concern went up to 84% for those who were in favour of assisted dying. We really need to look at the provision of palliative care and the specifics in the Bill that make reference to the fact that people should be offered what is available to them. We need to have a much clearer definition of what “available” means.
Naz Shah
Q
“I have studied the reports from, and spoken with medical and nursing clinicians from US and Australian jurisdictions and am satisfied that external coercion has never been reported or led to a prosecution.”
The state of Oregon carried out a survey of people who died under its assisted dying scheme in 2023. Its report stated that 43% of those who chose to die said they did so because they felt they were, and I quote directly from the term used in the survey, a
“Burden on family, friends/caregivers”.
Is that something you are prepared to see happen in the UK?
Dr Ahmedzai: It goes absolutely to the core of being British—we are always saying sorry, aren’t we? We apologise for everything. In everything we do, or everything we might do, we think we might be treading on toes and are always worried about being an imposition. All my professional life, I have come across patients and families in which there clearly is that feeling going on, usually with an older person or even a younger person who is drawing a lot on the emotional and physical resources of the family. It is natural that we feel a burden; it is impossible to take that out of human nature.
The issue is, does feeling that one is, or might become, a burden something that could influence a decision as major as looking for assisted dying? In that respect, I look to all those jurisdictions that have been offering assisted dying in different ways, and I have never seen a single case ever taken to the police or prosecuted. Evidence I have heard from other jurisdictions shows that, yes, it is possible—we all go through life feeling that we are a burden on someone—but it does not influence people in this particular decision. If anything, I am told that, in other jurisdictions, families are saying, “No, don’t do it.” They are exerting negative coercion—“don’t do it” coercion—but people are saying, “No. It’s my life. I’ve made my mind up.” They have mental capacity, and we respect that.
Sean Woodcock (Banbury) (Lab)
Q
Dr Clarke: Based on my clinical experience, I would push back on that in the strongest terms. I am the kind of doctor who believes there is nothing to be gained from sugar coating reality. We have to be absolutely honest with patients and the public about shortcomings, failings and areas where my profession and the rest of the NHS are getting things wrong.
It is my clinical experience that not only are the majority of doctors not necessarily trained in spotting coercion explicitly, but they are often not trained explicitly in having so-called advance care planning conversations with patients around the topic of death and dying, and how a patient would like the end of their life to proceed. It is almost impossible for me to overstate how much avoidable suffering occurs right now in the NHS not because of a lack of resources for palliative care—although that is an enormous problem—but because of a lack of confidence, skill and expertise among the medical profession writ large with these very difficult conversations.
We are all familiar with the idea of death and dying being a taboo in society. People are scared of it, and they hesitate to bring it up with their friends and family. In my experience, many medical students and doctors also suffer from that anxiety. They are scared, and they find it a taboo subject. What that means is that sometimes coercion occurs because the doctor—the consultant responsible for this person’s care—will not even bring up the fact that they think the patient is dying, because it is an uncomfortable conversation. Conversely, I have worked with senior hospital consultants in the NHS who have deliberately prevented our team from accessing their patients, because they believe that the hospital palliative care team wants to kill the patients, and that if I go and see the patient, I will give them a lethal dose of drugs.
These are the kinds of extraordinary misunderstandings and failures to prioritise patient autonomy that are happening now. That is even before we get started on conversations around whether someone would like to consider assisted dying, so it is a huge problem.
Dr Marie Tidball (Penistone and Stocksbridge) (Lab)
Q
Dr Ahmedzai: I have visited many of the jurisdictions around the world—such as Oregon, where I met the original judge who brought in the law, as well as the doctors, nurses and patients involved—and it was clear to me that if patients had not accessed palliative care, they were pointed towards it. Obviously, you cannot force anybody to go and have palliative care, but they were certainly informed about it.
In the Netherlands, I commend a system for doctors called SCEN—support and consultation on euthanasia in the Netherlands. These are trained doctors working for the equivalent of the BMA, I believe, who, as Dr Clarke has referred to, are going and supporting doctors who are not familiar with things. They often come from a background of palliative care and pain medicine, so they are making options available that other doctors in the process, for instance, have not brought up. In Australia, there is clear evidence that palliative care is becoming more available.
The European Association for Palliative Care produced a report more than 10 years ago in which it examined all the countries in Europe at the time, and it found there was evidence that palliative care was improving in scope and availability alongside the forms of assisted dying that were happening there. I am reassured that bringing in some form of assisted dying, particularly the form proposed here, would be a boost to palliative care.
One of the things I would like to see is that anybody who is involved in the process is constantly asking the patient, “What about palliative care? Have you actually accessed it?” Right now, if they have not raised their hand and asked for assisted dying, no one has that conversation with them. They are in a vacuum and a bubble, and not receiving palliative care, whereas this provision would possibly make it more available.
The Chair
Order. I do not want to squash any discussion, but I ask Members and the panel to bear in mind that we have until 3.15 pm for this session. I will be as lenient as I can with questions.
Dr Tidball
Q
Dr Ahmedzai: In the interests of brevity, yes.
Dr Tidball
Q
“entirely consistent with current medical practice and with compassionate care”
to raise assisted dying. You also said that raising the topic did not have adverse effects. How could clause 4 be strengthened to ensure that patients are presented with a range of treatment options at the end of life and relay any concerns that others have raised about suggestibility where this is mentioned in isolation?
Dr Ahmedzai: That is a complicated question. The first point is that right now, as Dr Clarke pointed out, it is scary to patients to be told that they may actually be receiving palliative care. When it has been mentioned—by an oncologist, for example—many patients say, “I do not want that. Don’t let them come anywhere near me or anywhere near my relatives.” It is not unusual that people may have an adverse reaction to just hearing about the service, but here the difference is that the person has actually asked for it.
I personally believe that it would be advantageous if there was formal training, as Dr Clarke has mentioned, specifically to have the kinds of conversations that we now talk about, such as about psychological issues and suicidal tendencies. It used to be thought that if you mentioned suicide to somebody, it would give them the idea, but of course it does not; it saves them, because they say, “Thank you. Yes, I was having those thoughts.” Bringing up assisted dying is never going to be harmful to the person, even if they had not thought of it. They will just say, “Well, it is not for me.”
Rebecca Paul (Reigate) (Con)
Q
Dr Cox: Professor Ahmedzai has talked about the evidence, which was written up to 10 years ago. There is actually more recent evidence, looking at the last 10 years, where European countries and American states have been assessed in terms of the development of palliative care services. That more recent evidence shows that although palliative care services have improved in those countries where assisted dying has been implemented, they have improved three times more in countries where assisted dying has not been implemented. The evidence from that study shows that the implementation of assisted dying is impeding the development of palliative care services.
The other thing we are really concerned about is the impact on funding. It is unclear how this is going to be funded. It looks as if it is going to be within healthcare, and if so, there will inevitably be competition with other aspects of healthcare, including palliative care, for those limited resources. There are finite numbers of doctors, nurses and side rooms in hospitals. If palliative care and assisted dying were funded from the same pot, I think there would be a massive detrimental effect on palliative care because we would be in competition for a limited resource.
I am also concerned about our palliative care workforce, which we know is already in crisis. Eighty-three per cent. of our members told the Royal College of Physicians in 2023 that they had staffing gaps, and more than 50% were unable to take leave because of those staffing gaps. Forty-three per cent. said that if assisted dying were implemented within their organisation, they would have to leave. This has a massive impact on palliative care, in terms of its potential to develop both our funding and our workforce, who are really concerned about this.
Rebecca Paul
Q
Dr Cox: The first thing to say is that palliative care is currently inadequate. Not only do we need to ensure that it does not decline, but we need to massively improve it so that this Bill offers patients a real choice. We know that effective palliative care can change a terminally ill person’s point of view from wanting to die to wanting to live.
We also know that 25% of people who die in this country do not have the palliative care they need. That is more than 100,000 people a year. Providing palliative care, which might make their lives better, reduce their suffering and even change their perspective on whether they would want assisted dying, should be our priority in reducing suffering in this group.
I do not know how we prevent this from happening. Making sure that palliative care has separate funding is important, because assisted dying and palliative care need to be separate in how they are delivered and in how they are funded.
Sarah Green (Chesham and Amersham) (LD)
Q
Dr Clarke: The fundamental principle is always that, by default, the patient has capacity unless there is clear evidence that they do not. We presume that patients have capacity. As doctors, we are obliged to ensure that patients have informed consent when deciding between different treatments. That means we need to lay out the whole array of treatment options, and the risks and benefits of each, to empower individual patients to make decisions for themselves.
Regarding the issue that has been alluded to of whether doctors should be prohibited from raising the issue of assisted dying, it is my belief that that would fundamentally alter the doctor-patient relationship. If consent is not informed—and it is not informed if we are not laying out all the different options to a patient—we are denying patients the opportunity to make decisions for themselves. A patient is always able to refuse every treatment, and in particular every life-prolonging treatment, that they choose to, provided they have capacity. We, as doctors, may think that a decision is unwise, but that is irrelevant, because those days of bad old paternalistic medicine are gone. The patient makes the choice. If a patient says, “I do not want chemotherapy. I do not want to eat. I do not want anything at all—no treatment”, we respect that, unless they lack capacity.
The elephant in the room with all of this is the capacity assessments. I would suggest that anybody who pretends that those assessments are easy and routinely done well in the NHS has not got enough experience of observing that happening. I teach capacity assessments to doctors and medical students, and it is often the case that they are very poorly conducted. The doctor often does not understand the criteria for assessing capacity. That is if it happens at all. Sometimes, a paternalistic doctor will decide that a patient is dying, and we should stop their antibiotics because they are clearly now at the end of their life. They have a chat with the family, who say, “Yes, we agree,” and nobody talks to 82-year-old Mrs. Smith and asks her what she feels about it, because they assume that she does not have capacity because she is old. I see that regularly. Sometimes, a palliative care team will intervene in those situations, because the professional and legal framework that is meant to guide this practice is just not happening. It is a very fraught and tricky area.
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 from day one of medical school onwards. Death is at the periphery of a medical school curriculum. Death and dying are not taught. You might get a week of palliative care in five years, and that has knock-on effects all the way through, at every level of seniority in the medical workforce.
Sarah Green
Q
Dr Clarke: Yes, I think that in the spirit of transparency and making this as safe as possible, it needs to be significantly strengthened. I would suggest that there need to be more safeguards in place. For example, if anyone in a hospital—whether staff, patient or family member—has concerns around a particular case, there should be mechanisms for those to be raised in a proactive way. Just as we have guardians of safe working and freedom to speak up guardians in hospitals, those opportunities to assess and appraise the safety in real time once a Bill is in place—I just do not think they are robust enough at all. The more we can have of that, the more that will allay people’s fears.
Daniel Francis (Bexleyheath and Crayford) (Lab)
Q
Dr Ahmedzai: You have caught me on the hop, because I cannot quote the level of training that doctors have received elsewhere, except for examples in the Netherlands, where there are additional doctors who are, through their medical association, trained specifically in assisted dying. I cannot tell you the number of years’ experience that doctors have in other countries. I felt that it was self-evident that you would want doctors who are experienced—three years, five years or whatever post qualification—and who have seen real life. It is up to the medical associations to stipulate how much experience, but I would not like the idea of a doctor immediately, having got their certificate of training, going off and making these kinds of decisions. That is why I suggested that ballpark figure.
Daniel Francis
Q
Dr Ahmedzai: Probably not, but this is a very, very special situation, and it may be, once it has become embedded in the health service, that that stipulation could move back.
I am so glad that Dr Clarke keeps coming back to training. One thing that is absolutely needed if this Bill goes forward is to take the topic of assisted dying out of being an optional training—where people might sign up for a course—to become mandatory. In the NHS, we do mandatory training for all sorts of things, including washing hands, lifting and basic life support. There should be basic dying support mandatory training as well. Why do we not have that? That kind of provision would become part of training doctors up to become good at those conversations that Dr Clarke is obviously involved in teaching, and in ensuring that they keep up to date with how the law is changing too. I would look to the royal colleges and the GMC to lead on those aspects.
Dr Simon Opher (Stroud) (Lab)
Q
Dr Clarke: I absolutely agree that in a small number of cases, palliative care at the highest level cannot eradicate all suffering, and cannot prevent a person from wishing to end their life and have assistance in ending their life. That is absolutely the case; I would say that it happens surprisingly uncommonly, in my experience, but it does happen.
Autonomy is the crux of the issue for me, because autonomy is predicated on having meaningful choices. Can you actually choose option a or option b? Let us say that option a is high-quality not just palliative care, but medical care in general—district nursing care or social care, for example. If that is not available to you, you are potentially being pushed towards “choosing” option b—the route of assisted dying—not freely and not autonomously, but because option a has been denied to you by real-world failures. We all know about those real-world conditions—we are all familiar with the latest winter crisis, where patients have been dying on trolleys in corridors, etc—that are preventing the actual option of a death in which dignity, comfort and even moments of joy can be maintained right up until the end of life, when that patient is getting the high-quality palliative NHS and social care that they need.
That is the crux of the issue. If you do not have that as a real option for patients, we can say that they are choosing autonomously assisted dying, but actually society is coercing them into that so-called choice because it is not funding the care that makes them feel as though life is worth living. That is why I think many of my colleagues are so concerned about legal change now. It is not because of an opposition to assisted dying in principle. It is because the real-world conditions of the NHS today are such that people’s suffering means that occasionally they will beg me to end their life, and I know that that begging comes not from the cancer, for example, per se, but because they have been at home not getting any adequate pain relief. Once you start to provide proper palliative care, very often that changes.
Danny Kruger (East Wiltshire) (Con)
Q
Dr Cox: I and my colleagues have concerns about the safeguards in the Bill. It is not just the capacity assessment; we also acknowledge that prognosis is incredibly difficult to assess accurately. 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.
The other thing that concerns me is that we are putting all these assessments on the shoulders of two doctors individually, followed up by a High Court judge. In any other clinical practice, when we are making very serious decisions, we know that shared decisions are much better quality, much more robust and much safer. In clinical practice, we make all these decisions in multi-professional teams. I would never make these decisions independently of my team, because the perspective they bring can help me to understand things that I am not seeing.
The thing that I am really concerned about is how it is possible for these doctors, even with training, to have a good understanding of all illnesses in order that they can identify prognosis—neurological, cancer and every other. How is it possible for them to really understand capacity when capacity is not an absolute; it does change and it is very complex to assess? How is it possible for them to see all cases of coercion, which can be invisible?
In addition to that, are those doctors going to be looking out for opportunities to refer to palliative care when they see somebody who has suffering that could be addressed and may change their mind? Are they looking out for untreated depression? We know that treatment of depression can result in people changing their minds about wanting to die. It is a lot to ask these individual doctors to do, and that really concerns me.
Kit Malthouse (North West Hampshire) (Con)
Q
Dr Cox: There are two differences that I would identify. The examples you give are of somebody who may be naturally dying and is being kept alive, so the difference is that you are withdrawing a treatment; you are not intentionally killing them. This is the first difference with assisted dying.
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—they are safer and more robust. Secondly, the moral distress associated with these decisions is much less if you share them. That is also a worry for me—what happens to the moral distress of the co-ordinating doctor and the other assessing doctor? They are carrying a lot of moral distress. My understanding is that a very small percentage of doctors will want to engage with this—maybe 1% or 2% of all doctors will want to be in those assessing positions. They are carrying a lot of that distress because they will be doing a lot of assessing.
Kit Malthouse
Q
Dr Clarke: I think that is not quite right, and certainly not what I intended to convey. There are rules. There are very clear legal and professional rules and guidance and protocols around how to have these conversations. However, in practice, the quality of the conversations is contingent on the confidence, expertise, training and background of the individual clinicians having the conversations. There can be a great deal of inter-doctor variability in how conversations are conducted. In terms of addressing that, I would suggest that in an assisted dying scenario the crucial thing is to make the guidance and training as robust as it possibly can be to reduce the inter-practitioner variability.
Kit Malthouse
Q
Dr Clarke: No, of course not.
The Chair
Order. We have half an hour left. Nine people have asked questions and there are eight people left who want to. If we want to get through the questions by 3.15 pm, people will have to be self-disciplined when they ask their questions.
To the panel, forgive me, but we need answers in as reasonable a time as possible given the circumstances. Dr Clarke, if you wish to answer the last point, feel free.
Dr Clarke: Of course we want as much autonomy for as many patients as possible. The issue is around safeguards. If, for instance, you say to a vulnerable patient who has just been told they have a diagnosis of terminal cancer, “Have you thought about assisted dying?”, I would suggest that stating it broadly like that is a form of pressure and that you are potentially unintentionally coercing that patient. The very act of raising assisted dying in that way will make that vulnerable patient think, “God, is this doctor telling me that my life is not worth living any more?” Autonomy is much more subtle and complicated than we assume from outside.
Juliet Campbell (Broxtowe) (Lab)
Q
“Sadly, only half the people who need palliative care receive it.”
In your opinion, who are the people who receive palliative, and who does do not?
My question to Dr Clarke is similar. You have talked about the population being
“carved up into two groups…those who deserve to live and those are expendable”.
Could you expand on that quote and the two groups you referred to, as well as the impact that has on their treatment and care?
James Sanderson: You draw a really important point about not just the provision and totality of palliative care across the country but the inequity of access. Unfortunately, we find that the diversity of people who are accessing care in hospices across the country is less than those who are dying in hospital—43% of people currently die in hospital.
One of the things we really need to do is move to a new ecosystem of palliative care that looks at supporting people in different settings. We need specialist provision in hospices to support people with significant needs, but increasingly hospices are reaching out beyond their walls into the community, and 80% of Sue Ryder’s work is in people’s own homes. People tell us that they want to die at home, so supporting people in their own homes enables us to access more diverse communities and get to people in their own setting.
Increasingly, one of the things we feel is necessary is the provision of support inside hospital. Alongside wards, we would bring support to that 43% of people who are currently dying in hospital, to ensure there is equality of access in all places, both in in-patient settings and in the community. You draw a really important point that we have to look at the totality of provision and ensure that, when someone is offered palliative care—the Bill talks about that provision being available—there is universal access, in terms of the type of palliative care available and the access for everybody in society.
Dr Clarke: My comment refers to the fact that there is an immense gulf between the theory of the NHS being a cradle-to-grave service—or a service that cares for us at the end of life as it does at the start—and the reality. The reality that I see every day at work in my hospital is patients coming into the emergency department from the community sometimes in utter, abject misery, in agony, with a lack of dignity. They have been forgotten completely. They are not getting healthcare or social care, and no one cares about them.
Even in the hospital, patients who have a terminal diagnosis are sometimes cast out into the corners of the hospital. There are hospitals, and mine is one currently, where we do not even have a 24/7 palliative care service face to face. Every night in my hospital, and every weekend from Friday to Monday, you cannot see a palliative care nurse or doctor, despite the fact that for a number of years that has been an NHS standard. That is an absolute disgrace and it shows how little people who are dying are truly cared for in a civilised society.
It does not necessarily have anything to do with assisted dying, except that if we do not address that simultaneously, some of those people will “choose” to end their life, because we as a society do not care about them enough to give them the care that might make life worth living. Surely that is a travesty for Britain.
Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)
Q
Dr Cox: My understanding of the plan is that in the Bill—forgive me, but I am sketchy on this—the aim is for the registration to be as a natural death. It would not be referred to the coroner, and “assisted dying” would appear on the death certificate.
I am also a medical examiner. My concern is that, as a medical examiner, I am obliged by law to scrutinise all deaths to ensure that a referral to the coroner is not required and to identify any learnings. What concerns me in that role is whether enough recording is happening around decision making and the process to do my job properly. With my medical examiner hat on, do I know what happened? I do not see anything written down in the Bill about the records that are to be kept. What happened when the patient took the substance? What happened afterwards? Were any actions taken in the meantime? That is not so much something I have thought about a lot with my palliative care consultant hat on, but as a medical examiner it concerns me.
Dr Clarke: For the sake of time, I do not have anything to add. I completely agree with that.
Jack Abbott (Ipswich) (Lab/Co-op)
Q
Dr Cox: In European countries and American states.
Jack Abbott
Q
Dr Cox: I suppose it depends who you are. If you live in one of the postcodes where you cannot get palliative care, if you are socially deprived, if you are a member of an ethnic minority or if you have a lung cancer diagnosis, you will not get very good palliative care in this country. I think that is awful.
Jack Abbott
Q
Dr Cox: The position we would ask you to consider is whether this is the right time to bring in a law to give people a choice of assisted dying, when they do not have the choice to have good palliative care.
Jack Abbott
Q
Dr Cox: The NHS is very different from any other jurisdiction—
Jack Abbott
Yes, so the direct comparison is not necessarily relevant. Is that correct?
The Chair
I understand that, but address it through the Chair.
Dr Cox: Palliative care may well have improved in this country over those years when it also improved in other countries where assisted dying was not available. What we are saying is that there has been chronic underfunding of palliative care, so where we are now is inadequate.
Tom Gordon (Harrogate and Knaresborough) (LD)
Q
Dr Cox: I accept that there will be people even with a very good palliative care system who would still choose assisted dying. We do not currently have the very good palliative care system that we need. That is the thing that concerns me.
Tom Gordon
Q
Dr Cox: I will give you some examples. 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. We need to make sure that communities have telephone advice services at night. One in three do not have any advice overnight for patients and their families to access. There are some concrete things that we could change to demonstrate that we are delivering a good service. But currently we are not.
Tom Gordon
Q
Dr Cox: I would love to see it continue. I am part of the commission on palliative and end of life care. There is no guarantee that the recommendations of that commission will be funded, and that is what concerns me. I would love to see that happen. Would it not be great if the two could happen simultaneously? But there is no guarantee that that will happen.
James Sanderson: I want to come in on your point and agree with Sarah’s points. Obviously, we welcomed the Government’s announcement of the additional funding for the hospice sector, but the Committee will be aware that the hospice sector currently receives only about 30% of its funding from statutory sources. We are therefore reliant on the good will of the population to raise money and support us in various ways, and through retail and other ventures that we have.
On the point about universality of service, we have in the Health and Care Act 2022 a requirement for integrated care boards to commission palliative care services that meet the needs of their population, but although there is guidance as to what that should look like, there is not universal take-up of that guidance and delivery of all of the stated services. Although that is outside the scope of this Bill, it comes back to the context of how much the overall position can be strengthened across the country. The context for anybody looking to make a decision is within the same space. As Dr Clarke said in respect of informed choice, if the context is the same for everybody, we can have more confidence that that informed choice is made at the right level.
Kim Leadbeater (Spen Valley) (Lab)
Q
To go back to your point, Mr Sanderson, it is important to acknowledge the fantastic work that palliative care professionals do. Indeed, it is extremely important that we are having these conversations, which is why we gave extra time to this panel of witnesses.
Dr Cox, on your point about the pressure on the individual doctors involved in the process, the Bill is very clear that if they do not have the relevant specialism, they must refer to a specialist in that condition, and they “can” refer to a psychiatrist. There is probably consensus that we maybe need to strengthen the Bill in that regard. When there are doubts around capacity, doctors probably “must” refer to a psychiatrist. That is something I am taking away from these sessions.
I was interested in the comments about the multidisciplinary approach. We heard about that this morning from colleagues in social work and in nursing. I would love to know your thoughts, Dr Ahmedzai, about the idea of a multidisciplinary approach. I think there is a lot of value in that.
Dr Clarke, on this concept around training, it worries me that we have seen this afternoon a very different picture painted by you and others compared with what we heard this morning, when we had doctors and nurses telling us that they regularly assess for capacity and coercion. They said it is part of their day-to-day work and they were very confident in their ability to do that. Training is fundamental, and this is an opportunity to look at gold-standard training. I would be interested to know your thoughts on that.
Dr Ahmedzai: You asked me about the multidisciplinary nature of this. I am really glad you raised that, because we seem to be focusing on palliative care as being very professional, and I would remind people that there are levels of palliative care. A lot of palliative care is given not by specialists like the three of us here but by generalists—either GPs, as we have heard, or by oncologists or geriatricians. When we talk about increasing palliative care and improving palliative care, it is not just about more doctors like us working at a specialist level.
The other thing is that it is not just doctors. We have to acknowledge that nurses are on the frontline; they do so much more than doctors. When doctors clock off at 5 o’clock in those sad institutions that still do not provide 24/7 cover, there are nurses at the bedside all around the clock. Then, there are social workers, physiotherapists and others. If we are talking about meeting the needs of people who may not necessarily have pain but have other forms of suffering or worries, which are not even physical—the loss of dignity and the loss of independence—nurses are so good at supporting people in that. A doctor will just get in the way.
What we need to do is make sure that we are addressing the reasons why many people choose this. I know, from speaking to people abroad, that it is loss of dignity and loss of independence. Is that not a legitimate reason for wishing that you were not a burden on somebody, or on the state even? It is really important that we consider that.
The other thing to bring in as well, if we are thinking about the big picture, is another elephant in the room: palliative care is not strictly speaking actually in the NHS—not all of it. A lot of it is outside of the NHS, for historical reasons from 50 or 60 years ago when decisions were made. Although there are excellent charities providing discrete areas of it, we rely so much on non-NHS services. You would never think of going to a charity to get your heart transplant or your kidney dialysis. We need to confront the fact that palliative care is fractured because of that history and the genesis of how palliative care came to be. It is not just NHS. We must think about the multidisciplinarity.
Dr Clarke: Regarding training and how much it is required, 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.
What is interesting as a palliative care specialist is that I and my team will be asked to get involved with patients in every possible bit of the hospital—surgical wards, medical wards, intensive care, emergency departments—so you actually see a huge number of patients being treated by many different teams and many different doctors, junior and senior, all of whom are having these difficult, nuanced conversations around the end of life with varying degrees of skill. Of course some doctors and nurses are superbly skilled at having them, and I would say that there are many who are not.
The reason training is so important is that it is a little bit like Donald Rumsfeld’s unknown unknowns. You might not even be aware of the fact that you have caused a patient or their family distress. In a conversation where fear is a dominant part—the patient is fearful of suffering misery and loss of dignity at the end of life, but they may not voice that—you as the doctor can be completely oblivious of the fact that you have sort of stamped over those unvoiced fears with your hobnail boots. You are not aware of it.
This idea that a vulnerable patient needs to be absolutely at the centre of any conversation you are having is quite radical in some parts of the NHS. It needs to be taught much more assertively from day one of medical school, so that vulnerable patients are always at the centre of the room. That is why I think the single most important thing for the Bill and its safety comes down to training and actually recognising that these conversations are difficult and nuanced. If we assume that, we are going to make sure that the Bill is as safe as it can be.
Lewis Atkinson (Sunderland Central) (Lab)
Q
James Sanderson: I welcome the provision in the report. What is necessary is a benchmarking of the current position. Rather than waiting a significant period of time to do a review, we need to benchmark the current state of palliative care and then base subsequent reviews on any changes. As I mentioned before, we also need to look at the wider context. If we look narrowly at the provision of palliative care, we will not properly see what goes on across the whole environment of the health service and social care.
We have mentioned the fact that district nurses and general practitioners are providing a huge amount of palliative end-of-life care, so it may not just be what goes on inside hospices and in palliative care teams in hospitals. I agree that that needs to look at the demographic information so that we are collecting details on who is accessing palliative care and where, and the certain types. All that is necessary as part of the review.
Dr Cox: I agree completely that we need to be doing reviews now and in the future regularly on palliative care aspects. I also think there is an opportunity to write into the Bill other monitoring that would be really helpful in ensuring safety on an ongoing basis. That includes monitoring in terms of decision making—how often assessing doctors refer to others, how often they disagree and what happens after the declaration.
In the Bill there is, as far as I could see, no limit to the delay between the declaration and the request for the substance. That would be an interesting thing to look at in the future, because somebody could delay for six or eight months. Do we do another capacity assessment then? That is a tricky question. What about the taking of a substance? We have not talked about that. There are a lot of things we could look at in future that would be really helpful to monitor.
Lewis Atkinson
Q
Dr Cox: It is really difficult to know how many people who die by suicide because of their terminal illness would instead access assisted dying, and it is really difficult to understand the impact of assisted dying legislation on that. If we look at the evidence of suicide, we know that it is increased in people with serious illnesses, but it is actually increased in the first six months after diagnosis, not in the last six months of their lives, so it is about the trauma of the diagnosis. What we need for that is better mental health services, better support around diagnosis and earlier palliative care.
The other piece of evidence that I would offer to you is that the global picture of what happens to suicide rates after assisted dying legislation is introduced is confusing and mixed. But there are jurisdictions, for instance Germany, where after the introduction of assisted dying legislation the incidence of suicide has gone up year on year. I do not think we can say that introducing assisted dying legislation will stop those suicides.
Rachel Hopkins (Luton South and South Bedfordshire) (Lab)
Q
I was struck by the way the RCN talked—and you, Dr Clarke, used the word as well—about not being paternalistic, about having the patient at the centre of that conversation, and about ensuring that we listen to the patient and ask them, “What is it that you want?” That, for me, is all about autonomy. Do you agree? The emphasis must be on patient autonomy and their choice at the end of life.
Dr Clarke: One hundred per cent. Sometimes, those of us who work in palliative care almost see the extent to which we try to place the patient at the centre of everything as quite radical, when contrasted with a lot of the other medical specialities. My opinion about what is best for a patient does not matter; their opinion is what counts.
The power of the multidisciplinary team, and the reason for thinking that it may be worth considering amending the Bill so that there is a greater role for a multidisciplinary team, is this: the fact that everybody in that team brings their unique perspective. In my hospital, whenever there is a tricky issue regarding a palliative patient, we will have an MDT. There may be 10 people in the room, all discussing the issues. It might be that someone has decided that they want to withdraw their life-prolonging treatments, or they want to have life-prolonging treatment and, for whatever reason, it is really complicated. We will have the patient, their family, doctors, nurses, social workers and dieticians—a big group of people—in the room because that is the way to make the decision most safely and most effectively, in terms of enabling the patient to have the treatment that they wish to have. It is incredibly important to have that.
Rachel Hopkins
Can I ask Mr Sanderson to reflect on that, for the different context, Mr Dowd?
The Chair
No. Order. We have two and a half minutes to go. One other hon. Member wants to ask a question. I want them to come in.
Sarah Olney (Richmond Park) (LD)
Q
Dr Cox: I think it is a choice for the patient. It is always a choice for the patient who they want to involve from their social circle, whether that is family or friends. However, I think that if the patient wants the family involved, then they absolutely should be, and they should be part of those conversations and discussions.
Kim Leadbeater
Q
Dr Ahmedzai: Clearly, British people have had that option for many years, since Switzerland first offered that. It is clear that two things happen. One is that it selects people who are better off and more functionally capable—they can do it—so it discriminates against disabled people. Also, people tend to do it long before they need to, when they are still fit. That is because mostly, they want to go on their own, without dragging relatives along. It is doubly damaging to families who are going through an illness with somebody who is dying. They have to say goodbye to them long before they need to. However, that is because we do not offer that option here.
Kim Leadbeater
Does anybody else want to comment? Dr Cox?
Dr Cox: I am happy to. Of course we do not want people to have to make that choice. I will refer to everything I have said before: are they are making a real choice, and have they had access to really excellent palliative care?
I also make a brief point about the impact of the discussion around what dying looks like that the Bill has raised, and the fact that the stories that have been told have suggested to many members of the public that death is inevitably ugly, horrific and dramatic. Actually, that has made many people fearful, and they have been emailing me and saying, “I am now afraid of dying, and I wasn’t before.” They may then choose assisted dying before they need to because they have had a fear instilled in them that death is inevitably horrible and dramatic.
The Chair
Order. That brings us to the end of the time allotted to the Committee to ask questions. I thank our witnesses on behalf of the Committee for their evidence.
Examination of Witnesses
Sir Max Hill KC, Alex Ruck Keene KC and Sir Nicholas Mostyn gave evidence.
The Chair
Q
Sir Max Hill: Good afternoon. I am not sure how much by way of introduction you want, so please stop me. I was the UK independent reviewer of terrorism legislation 2017-18, and the director of public prosecutions 2018 to 2023—so I stopped 15 months ago. I am not a campaigner; I am here to bring any experience of criminal casework that I may have picked up along the way, as that was part of my diet as DPP. I have been quite close to the construction of the Bill, and I am happy to deal with any questions that I can.
Sir Nicholas Mostyn: I am Nicholas Mostyn, and I was a judge of the High Court family division, of the Court of Protection and of the administrative court until 2023, when I retired with the onset of Parkinson’s disease—which is a genuine slippery slope, unfortunately. I am now a podcaster and devoting myself to alleviating the hardships of people living with Parkinson’s.
Alex Ruck Keene: I am Alex Ruck Keene. I am a barrister in independent practice, and I need to emphasise that I am giving my evidence as a self-employed barrister, not on behalf of any organisation I am associated with. You will have seen from my written evidence that I am associated with quite a few different organisations, because my practice and career straddles both advising and appearing in court cases involving mental capacity. I teach law on the end of life as a professor of practice at King’s College London. I am also heavily involved in law reform in different ways; for instance, I was the legal adviser to the Independent Review of the Mental Health Act 1983. I also do an awful lot of training in the context of mental capacity of both healthcare and social care professionals.
Naz Shah
Q
Sir Max Hill: If the problem is anybody in future going on their own or accompanied by their loved ones to Dignitas, the answer is no—this Bill does not satisfy that. What we have learned from other jurisdictions around the world, where we see broader or multiple groups beyond the terminally ill who are entitled to use new legislation, has not been the model for this legislation, unless you and Parliament were to dramatically change it. The nuanced answer to your question is that this Bill does provide an opportunity for those in the category of being terminally ill, as defined in the Bill, to no longer have to resort, on their own or supported by loved ones, to going to Dignitas. So, yes, it can and will make a positive difference.
I should add, in answering this question, that my often-quoted personal experience is that 27 cases investigated as assisted suicide came across my own desk as the DPP —five to six cases a year. A substantial proportion of those cases did involve Dignitas, because an accompanying relative who had returned alone was then investigated, but a proportion did not involve Dignitas at all, because there had been deaths at home. Of all those 27 cases, I made the decision to prosecute in only one, which was the case of an individual who was 19 years of age encouraging another teenager to end their life. That was a correct and successful prosecution.
I will also add—because until 15 months ago I was a prosecutor, and prosecutors look to bring criminal cases whenever the law is broken—that there was an additional handful of cases in which, although I was not making the personal decision, I supported authorisation of charges for murder or manslaughter where it was clear that an individual’s life had been brought to an end not at the time of their choosing. It is perhaps important to remember that this Bill, as and when passed—that is a matter for Parliament—would not truncate the homicide jurisdiction in this country. It will still be possible to prosecute for murder in those cases when one would expect to be prosecuted for murder. I think it is important to say that, as a very recent former prosecutor.
Naz Shah
Q
Sir Max Hill: That small handful of cases involved an elderly couple where either he—it was usually a he—or she had chosen to bring to an end the life of their lifelong partner and, once that act had been carried out, claimed that it was an assisted suicide in circumstances where the surviving partner was merely carrying out the wish of the person now dead. There are a handful of cases in which that is clearly wrong and should not be accepted and where murder should be the offence brought before the court.
The point, though, is that throughout the time that I served as DPP—and, indeed, the time served by all my predecessors—we did not have the coercion offences created by the Bill, which I suggest would be a significant advance, and nor did we have a legal system in which the investigation was taking place before the death. It was the other way around. In each of the 27 cases I considered, the deceased individual was already dead, and that is when the scrutiny started. The major advantage of the Bill, if I can put it that way, is that that will be reversed, and scrutiny will be before death. In the case of coercion, where it fits the new potential clauses, prosecutions can—and, I am sure, will—be brought.
Dr Tidball
Q
Sir Max Hill: I think that coercion and the coercion clauses in the Bill should be read alongside the capacity clauses. What we are looking for, as required by clause 1(1) and clause 1(2), is a clear, settled and informed wish, voluntarily made without coercion or pressure. Those aspects were taken, at least in part, from the Crown Prosecution Service guidance on 1961 Act cases. Capacity involves understanding information, retaining it, using it and communicating it. If those hallmarks are not there, you may be in a situation where you should be considering coercion. I think you read the two together.
To answer your question directly, the criminal liability clauses—clause 24, and the new offences in clauses 26 and 27—are robust. As a matter for your scrutiny, they are aspects that we do not have in the law at present. There is, of course, the addition of clause 36, under which you cannot be a witness or a proxy to the procedure that is enshrined in the Bill if you are too close to the terminally ill person. That is another hallmark of the Bill that will hedge against coercion.
Dr Tidball
Q
Sir Max Hill: My inclination is that clause 26, which is part of the full body of the Bill, is the right place for this. As with the interpretation clause, clause 40, and as with the way we interpret statute as a matter of course, there are aspects of other statutory offences or Acts of Parliament that help us when we are seeking to determine what coercion is. The creation of the offence of coercion and control, now very commonly used in domestic abuse investigations and prosecutions, has brought us into this territory. It is not beyond the wit of anybody who seeks to use and interpret this Bill to also look for other parts of statute that deal with coercion.
I make the same point about capacity. What is in the Bill is very slender, one might say, because clause 3 simply invites the reader to look across to the Mental Capacity Act 2005. But that Act is very clear on what mental capacity is and how it is defined. I think what I am saying is that it is a drafting point, and I am not a parliamentary draftsman, but I do not have a problem with the definitions of dishonesty, coercion and pressure being in clause 26, where they are. It is not the only place one would look, though; there are other sources.
Dr Tidball
Q
Sir Max Hill: “Dishonesty” is a term of art in common use, but it is also a term of statute. Anyone investigating or, still more, prosecuting would understand what dishonesty means. I accept that there is a wider point—not so much for interpretation but for understanding—that this Committee may want to consider, of how much of that existing definition needs to be imported into the Bill. As with mental capacity, I would suggest that, beyond perhaps the odd footnote, it is not necessary for you as a Committee to define again what dishonesty means, because we have it elsewhere.
Alex Ruck Keene: On pressure, I think the Committee would be really assisted by having a look at the learning of the High Court judges exercising their jurisdiction under the inherent jurisdiction in relation to people who are said to be vulnerable. They have developed an awful lot of tools, where they are trying to look at people in complicated situations—potentially, but not necessarily, with impairments—who are caught up in what one person brilliantly described as being caught in a spider’s web. Those are the sorts of sets of tools used when judges are trying to work out what is going on, and whether it is the side of the line we consider to be acceptable or the side of the line we consider unacceptable—because “pressure” is doing a lot of work there.
Jake Richards (Rother Valley) (Lab)
Q
Sir Nicholas Mostyn: One per cent would be 6,000 deaths a year. If each took two hours to process in the High Court—you have to read it and hear the evidence; one of them has to be oral and you have to write a judgment—that is 12,000 hours. Each High Court judge does 1,000 hours in court—outside court, they do lots—so you are talking about nearly three quarters of the entire family division doing nothing but this. It is impossible, in my opinion, for this to be done by the High Court. It should be done in the Spanish way by a panel that is set up. In Spain, the chairperson of the regulator sets up a panel for each case—a doctor and a lawyer. They have to agree and they check that everything has been done lawfully. They do not make any value judgment about whether it is in the person’s best interest. They check that it has all been lawfully.
Interestingly, in 2023, 10% extra denials were done by the panel. I do not know whether that was because they were concerned about voluntariness or whether they were concerned about suffering—because the criterion is suffering there—but an extra 10% was done by the panel, so the panel was not just rubber-stamping. They denied an extra 10%. I believe that an ad hoc system like that, with a doctor and a lawyer doing a check, would be the best way of doing it. The High Court—trust me, I’ve just come from there—has not got the capacity to deal with 6,000 cases of this nature.
Jake Richards
Q
Sir Nicholas Mostyn: Can I just answer before he does?
Jake Richards
Yes—it’s just that otherwise I will be cut off. I was trying to get two questions in.
The Chair
Order. I said earlier that this is not a dialogue. Address your comments to the Chair, and I will decide who speaks and when. I do not wish to be rude, but everybody’s got to have their fair share.
Sir Nicholas Mostyn: I do not know if you have seen Sir Stephen Sedley’s memo, which came today. He has suggested that the Official Solicitor should be the checker of these facts, which seems a sensible idea. The Official Solicitor would be able to recruit more staff to do this. It would not be nearly as expensive as High Court judges, and it would be an efficient way of dealing with the problem. The advantage of the Spanish system is that you have a qualified doctor as well as a lawyer doing the checking. Remember—a High Court judge is not going to be a qualified doctor. That is a significant advantage in my opinion.
Danny Kruger
Q
Sir Max Hill: I am not sure about that. I would always default to the code for Crown prosecutors and the two tests that the prosecution must go through, regardless of the crime that is being investigated. The evidential stage test sets out what it is necessary to be able to prove—some people say to a reasonable level—to afford a reasonable prospect of conviction. One can well imagine that, in Dignitas cases, that hurdle or test is often satisfied. It was often satisfied in the cases that I considered, and could often be satisfied in the future, but the evidential stage test being satisfied does not always mean that a prosecution results. That is because prosecutors must then go to the public interest stage and consider the non-exhaustive list of factors that are set out in the public interest stage test together with other policy, which, in this area of law, has developed since the legal case of Purdy in 2009.
In common with many other forms of crime, there are some legal policy considerations that a prosecutor is entitled to consider. They start at the very obvious—for example, what is the age of the suspect? Here, one is not thinking about the deceased who has gone to Dignitas. What is the age of the suspect? What are their characteristics? Have they ever committed a criminal offence before? What is their proximity to the case? What motivation did they have, emotional or otherwise, to lend assistance that technically means they have committed the offence?
I am going through that because, as I said, a proportion of the cases I considered were Dignitas cases, and it was often at the public interest stage that I determined that a public prosecution was not necessary. That is because, after full investigation, it transpired that the surviving relative had acted wholly out of compassion and, may I say, love for the deceased and was not seeking any gain for themselves—far from there being any dishonesty before or after the fact. That would still remain the case. It does not follow that, were this Bill to pass and were people then to take elderly relatives to Dignitas, they would necessarily face prosecution, but the premise of your question is “Could they?” and the answer to that is yes.
Danny Kruger
Q
Sir Nicholas Mostyn: I do not agree.
Danny Kruger
Q
Sir Nicholas Mostyn: I think it is unlikely. I am sorry for interrupting you. I always used to say, “Don’t interrupt”, so I am sorry about that.
I fear that I will be one of the people, referred to by the lady who asked the first question, who has to go to Dignitas—frankly, I could afford to do that—because the Bill is not ever going to provide an assisted death for me. I will not be graphic about what the advanced stages of Parkinson’s are like, but the medical Members among you will be able to describe what is likely—not definitely; I do not want to say definitely—to await me. I am choosing my words carefully. It is either going to be a poor death here or to go somewhere like Dignitas. If my children took me as far as Calais, and then helped me after Calais—assistance only applies to within the jurisdiction—and drove me on to Zurich, I would be extremely surprised if any prosecution ensued.
Danny Kruger
Q
Alex Ruck Keene: I think there are two different questions. First, is any idea of capacity sufficient at all? I think that is an existential question that I am just going to park. Turning to the Mental Capacity Act itself, it is important to understand that there are three different bits of that Act in play. We have a set of principles: the presumption of capacity; the presumption that you have to provide all practicable support before you find someone to lack capacity; and the idea that you cannot, just because a decision seems unwise, say that someone lacks capacity. Then we have a functional aspect—in other words, can you understand, can you retain, can you use and weigh the relevant information, and can you communicate that decision? We also have what some people call the diagnostic element—in other words, is there an impairment or disturbance in the functioning of the mind or brain?
These are the three separate things, all of which we make work—more or less—in everyday practice. I say “more or less”, because yesterday I was on the advisory group for a project funded by the National Institute for Health and Care Research, which was funded in 2022 to try and increase the quality of mental capacity assessments in healthcare settings. We need to be under no illusions about how well we are doing it at the moment, but we make it work, more or less.
The Mental Capacity Act works more or less in the healthcare context, because every time we reach the view that someone cannot make a decision, we have an alternative—we can think about best interests. What we are asking the idea of mental capacity to do here is different, because there is no suggestion that, if you cannot support someone to make a decision, you will ever make a best interest decision in their name to assist death. It is also not obvious that the idea of a presumption of capacity should apply. 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? Also, it is not immediately obvious that it is right that the diagnostic test applies in this context. 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. That is where my concern came in when I was explaining it in my written evidence.
I want to be absolutely and totally crystal clear: as far as I am concerned, at this stage, this is policy development. I am so glad that evidence is being taken and the public is thinking about this, but a Bill of this nature needs to be drafted by the Office of the Parliamentary Counsel. I am really trying to get across the policy line, which to me is about what doctors need to be interrogating—or anyone else, as I would love it if other people were involved—is, can the person understand the information? Can they retain it? Can they use and weigh it? Can they communicate their decision? If they cannot, we do not need to start mucking around with, “Why not?” It is just that they cannot, and that is the central idea of capacity. It is the functional idea, but it is tooled for use in the Bill rather than, as it stands at the moment, just being cross-referred out to the Mental Capacity Act, raising a whole series of additional complexities.
My only other observation is that I spend an awful lot of my life trying to improve Mental Capacity Act practice more broadly. I would be massively concerned were a knock-on effect of the Bill’s seeking to deal with a very specific group of people to be that it starts inadvertently—it would be inadvertent—interfering with how we think about healthcare decision making more broadly in the context of those people with impaired decision-making capacity. It is an insulation point, a making sure you have the right tools for the job point, and a not having a knock-on effect on thinking about things more broadly point. Sorry for the long answer.
The Chair
I will move on to Sojan Joseph, but perhaps you can pick this up. We have eight people wanting to ask questions and half an hour, tops.
Sojan Joseph (Ashford) (Lab)
Q
Alex Ruck Keene: I think for many reasons it can. On the pure capacity side, this is, at one level, an existential question. This is not a healthcare decision but an existential decision. The more people we have who are able to bring their different perspectives—the social work perspective on the person’s social circumstances or the medical perspective on their medical condition—the better, so that we have as many eyes on the person and insights into the person as possible.
It is about trying to make sure that the decision goes back to whether we are really satisfied that the criteria set out at the beginning of the Bill are met. I personally think we should have MDTs, for instance, as you would have in a Mental Health Act detention, so that we have more than one pair of eyes on it from more than one discipline.
Jack Abbott
Q
Sir Nicholas Mostyn: I was sort of taken by surprise when she asked the me the question in the pub, and I would not have phrased it like that in court 50.
Jack Abbott
Q
Sir Nicholas Mostyn: Parkinson’s is such a complex condition. The medically qualified amongst you will know this—there are so many symptoms, and with the rate of development and the direction of travel, it is an enormously complex condition to know. That is why it is commonly accepted that you do not die from Parkinson’s, you die with Parkinson’s, and it is almost impossible to give a mortality rate as to when that is likely to happen—almost impossible.
When I was doing my research, I was slightly surprised to see that last year 6,000 death certificates had Parkinson’s written on them. They do say that the experts in Parkinson’s are the people with it, but the people you talk to are quite clear that it is impossible to predict and it is a really complex thing. That is why this arbitrary—I use the word technically—six-month period is a problem. If a doctor opines conscientiously and honestly, unless the Parkinson’s patient has already developed pneumonia, sepsis or something of that nature, or complications from falls—the common reasons for death—you will never get that six-month ticket. That is the thing; that is the problem.
Jack Abbott
Q
Sir Nicholas Mostyn: Neurodegenerative.
Jack Abbott
Yes, those with such conditions. Are they left out of this debate?
Sir Nicholas Mostyn: They are.
Jack Abbott
Q
Sir Nicholas Mostyn: It has been suggested that I want to expand the definition of terminal illness. I do not want to expand it. I want to redefine it so that it is more appropriately focused, in my opinion, on what this Bill should be about, which is the relief of suffering. That is what I believe the Bill should be about. You should get the permission to have an assisted death if you are suffering intolerably within five months of death or seven months of death—there should not be this arbitrary line.
Moreover, it should not be open to people who are not suffering, but who happen to have a six-month life expectancy. There are probably quite a few of them, for one reason or another, whose life expectancy is short, but their pain is well-managed. I do not believe that assisted dying should necessarily be available for them. I do believe very strongly—this is not an expansion, but in my view, a more appropriate focused redefinition of terminal illness—that it should be, as in Spain and in Holland, focused on suffering.
Rebecca Paul
Q
My second question, which is completely different—just to mix it up—is on a really interesting point in your written statement about how we need to give consideration to the national suicide prevention strategy. I found that really interesting, because the Bill potentially turns on its head the way we view suicide, and obviously we have been sending a certain message out there, particularly to our young people. Could you elaborate on the point you were making in your written evidence to the Committee?
Alex Ruck Keene: Gosh—yes. There is absolutely no way that you can stop people trying to challenge whatever Act is passed; there is no way you can stop people seeking to challenge that under the ECHR. We then get into this enormous argument about whether it is inevitably discriminatory. Courts to date have been very clear: “We are not going to get into this; it is for Parliament to decide whether to make assisted dying legal.” Once it is made legal for some people, but not for others, there is a difference in treatment. Whether it is discriminatory, and therefore contrary to articles 8 and 14 of the EHCR, depends on whether that difference is justified.
I am trying to be very careful in my language, because I try to do that. The Bill Committee and Parliament need to be very clear how, if you are going to limit this to a cohort of people—I feel acutely conscious that I am sitting next to somebody who would be excluded—it could be explained to somebody that they are not eligible and that there is a difference in treatment but it is perfectly justified. If you cannot do that, it will be discrimination.
The courts have been very clear that you do not have to have a system, but if you are going to have one—for example for social security benefits—then you need to have one that is non-discriminatory. That is the answer I can give to that. The one thing I can say is that you cannot stop lawyers trying to challenge. That is what they will do.
Sir Nicholas Mostyn: All laws discriminate; 69 mph is not an offence but 71 mph is. All laws discriminate. The question is whether it is justifiable.
Sir Max Hill: It is also a question of providing legal certainty, which is why the definitions in the Bill are so important. Provided that it is articulated clearly and within what the European Court so often calls the margin of appreciation, which it gives to sovereign states, then although I agree with Alex that a challenge may be possible, I cannot see a successful challenge to the Bill if it is drawn with the sorts of provisions we have here. Indeed, we have not seen local nation state examples of this sort being struck down by the European Court elsewhere in Europe, so I think it is very unlikely that we would see such a strike-down here.
Alex Ruck Keene: I really hate to get into it with such eminent lawyers, but there has not been a case in Strasbourg seeking to say that a limited class of case is discriminatory, so we just do not know.
Sir Nicholas Mostyn: I agree with that. I have changed my mind twice about this subject.
Alex Ruck Keene: Do you mind if I quickly touch on something else?
Daniel Francis
Q
Alex Ruck Keene: I should make it absolutely clear that all I am trying to do is make sure that whatever law is passed is a good law and has as few inadvertent consequences as possible. My concern here arises out of the fact that understandably the proponents of the Bill want to make it very, very clear that this is about people carrying out a final act, and no doctor is allowed to do something that involves going beyond that. At the same time we have a situation where doctors—I am using the word “doctor” slightly loosely, but for present purposes that is what we are talking about—have to be present and have to remain with the person. We know that there will be some people for whom there are complications.
My concern is to make sure that there has been sufficient consideration given to what exactly a doctor is meant to do at that point, because it seems to me that it ends up putting the person who is undergoing those complications in a horrible position. It is also—I am perfectly happy to use this phrase—putting the doctor in a position of extraordinary moral distress. Are they at that point supposed to try and rely on the doctrine of double effect and say, “All I am trying to do is treat the complication, not bring about your death,” but the Bill is saying, “No, you are not allowed to do that”? I understand entirely why the intention is to say that the doctor must always be hands off, as it were, but you need to super clear that you are going to put some people in some very, very difficult positions, and Parliament needs to be clear-eyed about that.
Dr Shastri-Hurst
Q
Sir Max Hill: I would not look at it on grounds of discrimination. What I would do is put that clause alongside what are generally referred to as the slippery slope arguments in other jurisdictions. In other jurisdictions—Canada might be one and some of the US states might be another—the provision of life-ending medication is expressed in a form of treatment by a doctor. This is not that. We are clear when reading clause 18 that it is not a permission to administer; in fact, it is a prohibition on administration. It is making available in certain tightly defined circumstances and then standing by—not necessarily in the same room, as stated in subsection (10)—while the self-administered medication takes effect.
Having said that, I am absolutely clear that there is only so far a Bill or Act of Parliament can go as primary legislation. There is then further distance that must be covered by the provision of practical and professional rules, under the auspices of the national health service here, to indicate precisely the circumstances in which this will physically happen. I do not see that as discriminatory; we are dealing with a tight category of defined individuals to whom this applies and it does not apply to anybody outside that, as we have just discussed. But it is not prone to the slippery slope arguments of something that is generally to be made available in the course of treatment. In fact, the Bill has been couched in a very different way.
Dr Shastri-Hurst
Q
Sir Nicholas Mostyn: I did. What particular aspect do you want me to address? The range is quite wide. In relation to the administration of the substance, it is interesting that in Spain, which is now in its second full year of doing this, take-up has been extremely low. There have been only 700 requests, with a quarter denied, and a quarter of the people died prematurely. Three hundred were granted, but of those 300, in 95% of cases the substance was administered by the doctor and auto-administered in only 5%. I am trying to work out why that is, culturally, in Spain. Maybe people go when they are extremely infirm, and that is the reason for it. I am not able to see the moral distinction between having the substance administered and auto-administration. On your question, there are devices that enable somebody who is locked in to end their lives by a blink of the eyelash, aren’t there?
Sir Max Hill: Yes.
Lewis Atkinson
Q
Sir Max Hill: I would say two things. First, it bears weight that, looking at all the provisions in the Bill, the additional level of scrutiny currently being called judicial scrutiny or approval is absent in all the comparative examples around the world. That already makes this a tighter pre-legislative model than we see in other countries that have gone down this route. That is worth remembering.
Secondly, while I am not a family lawyer—I was, but a very long time ago—I think that the family division of the High Court would be very well-placed to perform the sort of exercise enshrined in current drafting, which is not a rubber-stamping exercise, but a substantive consideration of heavily objective medical opinion arrived at by not one, but two doctors, one of whom is not the treating doctor.
I listen to and accept the question of pressure on the justice system generally. That is something the Committee will be concerned about because, if the Bill passes, we want something workable. I heed what Sir James Munby said. The sitting judiciary, for good constitutional reasons, is highly unlikely to say anything. But there is therefore merit in looking at clause 12, under the heading, “Court approval”, and performing quite a simple exercise, which for me would be going through subsections (1) to (6) inclusive and, where it says “High Court”, replace that with something else. Personally, I have an aversion to the word “tribunal”, which indicates a right and wrong or some kind of fault-based system—that is not what we are talking about here. But a panel, as Nick said, is the way to go—
Sir Nicholas Mostyn: A panel appointed by the Official Solicitor.
Sir Max Hill: Whether appointed by the Official Solicitor or not. Dare I say it—because I am sitting next to a very distinguished one—I do wonder about the recently retired members of the judiciary and the role that they could play under a replacement panel system.
Sir Nicholas Mostyn: That is what I had in mind—the Official Solicitor looking at the retired judges.
Sir Max Hill: Yes, so there is legal professional capacity among the retired judges—not that they would sit alone on a panel. It would bring with it the extra benefit of having suitably qualified medical professionals, like the Spanish model. So yes, I think that could be done. That is not the same thing as saying that the High Court approval model is fatally flawed and could not be introduced, but I do think there is a viable alternative, which is worth looking at.
Alex Ruck Keene: I have only one observation, and I said this in my written evidence but I also want to say it out loud. You have to think very carefully about what purpose any form of this oversight is actually serving societally, if the oversight panel, whether that be a judge or a panel, cannot decline to approve an application if it considers that the reason the individual is seeking assistance in dying is because of service provision failures by the statutory bodies responsible for meeting their health and social care needs. That is a question of principle, and I want to make sure that that is squarely before you.
Liz Saville Roberts (Dwyfor Meirionnydd) (PC)
Q
Alex Ruck Keene: We have capacity, but we also have to make sure that it is settled, informed and voluntary, and that we do not have things like pressure or influence going on. It is important to make it clear that we are not just saying that this is about all the weight going on capacity. For instance, if you have social workers involved—if you have, say, palliative care social workers involved, assuming it is a palliative care situation—they are going to be far better informed about what options might be out there than a doctor, potentially, depending on the doctor. Social workers more generally might well have more expertise in picking up signs of coercion or influence than a doctor, but I do not necessarily want to get into, “Some disciplines are good at X” and “Some disciplines are good at Y”—I have come across brilliant examples and bad examples in both zones.
It is partly about multidisciplinariness and also about the fact that you have more than one person trying to talk it through. When I train, I always try to tell people that 85% of capacity assessments are not all that difficult —they are just made difficult because you do not have time or you are not listening—but 15% are more difficult. I think a lot of these will be in the 15% zone, and in that zone, the more people you can have thinking about it, so long as they have an agreed framework within which to think, the more reliable, transparent and accountable the outcome is going to be.
The Minister of State, Ministry of Justice (Sarah Sackman)
Q
Sir Nicholas Mostyn: The former.
Sarah Sackman
Q
Sir Nicholas Mostyn: It will have the statements in schedules 1 to 4, signed by both doctors twice. This is where it gets slightly tricky. Is the panel expected to be a ferret and say, “This does not quite chime for me”? The Committee will have to consider how investigative the panel will be, or whether it will purely sit back, be passive and work on the material it has. Of course, under clause 12, it has to hear orally. That might get the alarm bells going, but I believe that the panel should be entitled to call for further evidence if it has concerns. As I say, I have been trying to find out why 10% of cases were rejected by the panel in Spain. There must have been some kind of procurement of further evidence by the panel in order to do that.
Sarah Sackman
Q
Sir Nicholas Mostyn: Article 10 of the Spanish law gives an appeal on a point of law to their high court, so I would have the same, with an appeal on a point of law to the High Court, but only on a point of law.
Alex Ruck Keene: Either way—it would have to be either way. It could not just be against a decision not to approve, logically, because the current model is very odd in saying that you can only appeal one way to the High Court.
Sir Nicholas Mostyn: Yes. Spain gives either side the right to appeal, so I agree with that, but it is confined to a point of law.
Sir Max Hill: I would only add that I wonder whether that is the only route through, namely leaving open a judicial review appellate process, or whether, for example, as we imagine with a number of commissioner-led processes already in this jurisdiction, the panel—or frankly, I suspect, panels, which might sit regionally, chaired perhaps by the retired judiciary—would have an appellate route to a national body, which you could call a national commission, instead of a judicial-review route to the Court.
There are a large number of commissioners, some sitting under the Home Office and some sitting under the Ministry of Justice—in a sense, I was a commissioner when I was the independent reviewer of terrorism legislation—with closely defined powers. There are many others who sit in an enhanced regulatory position—highly qualified individuals. You could describe them as national commissioners, if that is an appropriate term, and they would have superintendence over regional panels, and the power to appoint retired judiciary, perhaps with the assistance of the Official Solicitor, to sit on those regional panels, and then to have an internal appellate mechanism.
Sir Nicholas Mostyn: You have to have an appeals process of some type, because otherwise there will be judicial review. If there is no appeal, there is judicial review—so you have to have an appeal of some type or there will be judicial review.
Sir Max Hill: Yes, I agree.
The Chair
We have some Members who want to ask more questions; we have about six minutes or so. Jake Richards, you did have a possible question earlier on.
Jake Richards
Q
Sir Nicholas Mostyn: Relations who say, for example, “My father has been pressured by his new wife to do this”. If a father has given permission and the child has asked to intervene, there would be some process where the child would be allowed to become a party to the proceedings, because that will have to be specified in rules, and that person would then be the appellant.
Jake Richards
Q
Sir Nicholas Mostyn: Well, it does.
Jake Richards
It is an autonomous decision, so—
Sir Nicholas Mostyn: No, but it says, procedurally, they can determine their own procedure.
The Chair
Order. I am giving you an opportunity to ask a question, so ask the question, we will get the answer back and then we can move on. I do not want this dialogue, I am afraid.
Jake Richards
Forgive me, Mr Dowd. I meant that, in terms of the assisted dying process in the Bill, there is no automated mechanism for family members, or indeed any third parties, apart from the doctors, to have notice of this intention. Is there a concern, regarding this appeal point, that perhaps interested parties would not know?
Sir Max Hill: I would suggest that the key to this is in clause 12(5), and that is why I have recommended just striking out the words “High Court” and putting in the word “panel”, and then reading the whole of clause 12 as amended, with those situations in which there are steps that “must” be taken—and there are many—and those in which there are steps that “may” be taken.
In clause 12(5), following that logic, we would imagine that a panel, just as the High Court,
“may hear from and question, in person, the person who made the application”
but
“must hear from…the coordinating doctor”.
The appellate mechanism, which I agree there needs to be, will be looking sharply at the operation of that subsection. In other words, when the panel made its decision to refuse, on what basis did it make that decision and from whom had it heard? We can well imagine situations in which a co-ordinating doctor, having taken his or her own steps to ascertain the views of the nearest and dearest, would satisfy the panel as to what the views of the family are. The reverse of that is that there is no indication here that, having gone all the way through the panel, the family would have been made aware or considered at all. I think that that will be a rare scenario, but I am not a medical professional. I think you can cover that, perhaps with some changes here or there on what you impose on the panel as a mandatory duty and what you leave by way of discretion, subject to the rules of procedure that the panel would then adopt.
Dr Tidball
Q
Alex Ruck Keene: This is, for the moment, predicated on the fact that we are still in the High Court, as opposed to slightly making up policy on the fly about a panel. Assuming it is the High Court, it seems to me the Court has to be discharging a properly inquisitorial jurisdiction, which means it has to be armed with the tools to do that, which includes arming it with the tools to call for its own evidence. It also seems to me that the High Court would have to be armed with its own ability to not just receive evidence from one side and have someone testing it. That then brings you to the only player in town who could possibly do that, which would be the Official Solicitor as advocate to the Court.
I do not want to emphasise too much the question of resources, because if Parliament thinks this is sufficiently important, the resources will be voted through. But it is vitally important to note that the Official Solicitor is completely overloaded, and we would be asking the Official Solicitor to act as advocate to the Court in every single one of these cases. You could not have it be optional; you cannot say that it is some and not others. If it is going to be inquisitorial, the High Court has to have the ability to say, “This is one-sided; someone needs to tease it out,” so the Official Solicitor would have to be funded to be advocate to the Court and, if necessary, instruct lawyers in every single case.
Sir Max Hill: The model that I was espousing would not necessarily involve the Official Solicitor at all. It would make no draw on the administration of the Court or any officer of the Court, still less full-time judges. It would allow the appointment of recently retired judges, as we have in a number of scenarios—surveillance commissioners, for example—and a fresh administration. With that, as with the High Court model at the moment, there is the primary set of provisions, which Parliament must impose, and it is important that that is sufficient for what Alex called an inquisitorial function. Those are in part mandatory—those things that the panel must be satisfied about, which are set out in clause 12(3). Then there are those that are discretionary, which are set out in clause 12(5).
What sits between the two is very important. That is currently expressed as “Rules of Court”, but it would be the rules of the panel, or the commission that appoints the panels. In a court scenario, we are all familiar with criminal procedure rules and civil procedure rules; that is the secondary stage that is reached once the primary legislation has been fixed. That, too, would apply to the commission or panel process, but I do not necessarily think that it would involve using existing, paid judicial resources at all.
The Chair
We have one and a half minutes, so it will be a 10-second question and a 20-second answer; unless you can do that, I am going to call it to a close.
Dr Opher
Q
Sir Nicholas Mostyn: I would frame the law to define terminal illness in the way that it is defined here in clause 2(1)(a), but where the “person’s death in consequence” is referred to, I would delete clause 2(1)(b) and substitute “suffering intolerably”.
The Chair
Thank you. That brings us to the end of the time allotted for the Committee to ask questions. I thank our witnesses on behalf of the Committee; thank you for your forbearance.
Sarah Olney
On a point of order, Mr Dowd. I had my hand up at the beginning. I was really keen to ask a question in this session because it is pertinent to an amendment that I have tabled. Could you advise how best I can have the opportunity to ask my question?
The Chair
I am more than happy to speak to you afterwards. We have had lots of questions today and I tried to get people in as much as possible, but there has to be an element of self-discipline from the people asking the questions and interrupting. I am happy to facilitate if I possibly can, but I am afraid that there is also a responsibility on Members to look to other Members’ needs.
Examination of Witnesses
Dr Ryan Spielvogel and Dr Jessica Kaan gave evidence.
The Chair
We will now hear oral evidence from Dr Ryan Spielvogel, who is senior medical director for aid in dying services at Sutter Health, California, and Dr Jessica Kaan, who is medical director for End of Life Washington. Both witnesses will appear via Zoom. I call on Members to ask questions, but in view of the last point of order, I must be absolutely clear that I will interrupt if questions to the witnesses are too long. We do not have much time and people want to get their questions in—there has to be an element of self-discipline in that regard.
Kim Leadbeater
Q
Dr Spielvogel: Thank you all for having me today. I am Ryan Spielvogel and I am senior medical director for assisted dying services for Sutter Health in California. I have been an assisted dying physician for the past eight and a half years, since the law went into effect here, so I have seen many terminally ill people going through the process.
You asked specifically about coercion and capacity. Determining mental capacity is something that we use physicians to do every day. There are codified steps and processes for us to be able to assess a person’s capacity. Capacity for anything, for any procedure or medical intervention, is presumed—that the patient has capacity—until they are deemed to not have capacity. We do that through asking questions, determining their understanding of their disease process, asking them to repeat what their understanding of their options is, and making a decision and then telling us their judgment as to why they came to that decision.
That is something that we do every day. It is oftentimes informal. For instance, if I am prescribing someone blood pressure medication, I might not go through the entire process of assessing capacity, but in longer or higher-stakes conversations like end-of-life discussions, I usually do ask somebody to repeat back to me what they understand of their disease process, their options, what their decisions are and why they are making those decisions. That is basically exactly what I do in these conversations.
In terms of coercion, I understand the concern. It is a very valid concern that people have. I have seen this in many jurisdictions in the US, where different states are considering legalising assisted dying, but I will tell you that in practice it just does not happen. 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. People are just not that good as actors.
So we get the family out of the room. We dig deep into their concerns, their justifications and the reasoning behind their choices. It is often crystal clear, when you are speaking to someone who is suffering from a terminal illness. They are very focused on their symptoms, very focused on their quality of life, very focused on their suffering. I do not ever get the sense from them that their family, their doctors or anybody is coercing them into the decision. In fact, if anything, I have seen it many times the other way around. I tend to see it where the patient is really ready to let go, but the family is really not ready to let go, and the family puts up varying degrees of roadblock to the patient accessing assisted dying. I have seen many cases of people being coerced out of it; I have never seen someone being coerced into it.
Kim Leadbeater
Q
Dr Kaan: I echo exactly what Dr Spielvogel has said. As part of our medical training, we are trained to assess capacity in both small and big ways, depending on the size of the decision at hand, as he said. Throughout our medical training, we are trained to do that and to assess with a patient progressively over time, as we are seeing them in subsequent visits as well. This is really no different from that, although obviously the stakes are a bit higher than a blood pressure medication discussion.
We look at whether, for instance, the patient is able to voice a reason for making their decision. Do they have a logic behind it? Do they have a set of values that they can express? Is their decision consistent over time? We are looking at a longitudinal assessment, rather than just one fixed moment in time. Over the course of our assessments, it really does become clear in almost all cases that somebody either does or does not have the capacity to make this decision or any decision. This is really not outside the realm of what physicians are trained to do in any other case of medical decisions, especially large ones.
In the case of coercion, I agree that virtually all the time it is the opposite way: family members and loved ones are well-intentionedly trying to coerce or convince someone not to make this choice or not to proceed with this option, which they may have available, rather than pushing them to do it. I think the way to properly assess that is to ask open-ended questions: as Dr Spielvogel has said, to have them in the room alone, at least for a portion of the assessment, so you can have a one-on-one conversation; to ask the questions in various ways, so you are seeing the consistency of answers over time; and to look for non-verbal cues that may indicate that something else is going on. I have also never come across a case where I felt that a patient was being coerced into this decision by a family member, but rather the opposite.
Bambos Charalambous (Southgate and Wood Green) (Lab)
Q
Dr Spielvogel: The original version was called the End of Life Option Act. It legalised assisted dying in California when it went into effect in 2016. It was then amended in 2021, I believe; the effect of the main amendment was to shorten the waiting period. There was a 14-day mandatory waiting period between two verbal requests that a patient would give directly to their physician. What we found when we were studying it was that approximately 30% of people died during the waiting period.
There were many conversations with patients. The thought process behind the waiting period is that somebody is making a persistent, well-thought-out and non-capricious decision when they are asking for this, but there is a false premise there—[Interruption.]
The Chair
We were in the middle of your reply, Dr Spielvogel. Could you pick up where you left off?
Dr Spielvogel: I will make it brief. I was saying that it is an erroneous assumption that people start thinking about assisted dying the first day that they give their first verbal request. In reality, people have usually been thinking about it for weeks before that visit. Because of that, we did not see anyone’s decisions really ever change between the first verbal request and the second, 14 days later. That and the fact that 30% of people were dying during the waiting period led us to shorten the waiting period to 48 hours. That is the main change that we have had in our law since it was implemented.
Bambos Charalambous
May I put the same question to Dr Kaan?
Dr Kaan: You will know that throughout the United States there are a variety of aid in dying laws, all of them slightly different across jurisdictions. I practise in both the state of Oregon and the state of Washington, so I have to keep track of two slightly different laws.
In the state of Washington, where I am the medical director for End of Life Washington, we updated our law in 2023, mostly because we were trying to increase access to it for people who lived in rural communities or for people in underserved communities. Any healthcare system in the world right now has experienced a shortage of physicians, so the requirement for two physicians to do the certification was a barrier for people in those communities that did not have access to two physicians. One of the things we did to increase access in 2023 was to make it so that one of the two providers could be a non-physician: a physician assistant or a nurse practitioner with advanced training. One of the providers still needs to be a qualified physician, but that has increased access for those in rural communities and underserved communities. We are very proud of the fact that we have done that. Additionally, we shortened our waiting period for similar reasons, from 15 days down to seven days.
In Oregon, they shortened their waiting period. Well, they still have a 15-day waiting period, which has been stable since the start in 1997, but they also now have a provision whereby, if a patient is expected to die within those 15 days—if they are at the very end of their life and are not expected to be able to survive those 15 days—they can bypass the waiting period. I really like that provision, because there are patients who come very late in their process to this decision. It may not seem like much to us, who are healthy and relatively well, but 15 days for a dying person who is suffering and really wants this option is an incredibly long time.
Tom Gordon
Q
Dr Spielvogel: People often feel that at the end of life, just in general. I think that conscientious people will often think about their family and how their situation is affecting their family and loved ones. That is something that many people go through, so that is something that comes up relatively frequently. It is usually embedded within a laundry list of reasons that people are looking for assisted dying. When people bring it up with me, it is more of a commentary on what they do not like about their dying processes—that they are also feeling like a burden on their family. That is a red flag for me, though: when I ask someone, “Why are you reaching for this?”, and they say, “Well, I am a burden to my family,” it is a red flag for me as a physician.
This goes back to the argument about capacity and coercion, because we are trained professionals who listen for these things. This is not a rubber-stamp evaluation. When we ask people why they are looking for this, we really want to assess their judgment and see what their reasoning is. If they are saying, “I’m suffering intolerably. I’ve tried all the things that palliative care and my regular physician are offered me, but I’m still suffering irrevocably. Also, there is this other piece: I see what this is doing to my family,” that is totally valid. That is something that any of my dying patients might say, whether or not they are seeking an assisted death.
If that is the only reason, that is going to lead me to ask a lot of probing questions. It would be a red flag for me, but it is incredibly rare that something like that would be the only reason. Dying is a very complex process, and people’s thought processes during their own dying are equally complex. There are a lot of things that people think about during that time.
Dr Kaan: I echo Dr Spielvogel. It is common that among the lists of things that people mention as reasons, they may mention not wanting to be a burden on their families or not wanting to put their families through an onerous and prolonged dying process. Obviously, if that is the only thing that they are mentioning, it will definitely get them further discussion and exploration into what is going on and what other resources we can point them to, such as connecting them with social workers and available community resources for helping with caregiving.
However, I hear most commonly that people’s desire to save their families from a prolonged dying process comes from lived experience, where they themselves went through the process with a loved one such as a mother or father: they were caregivers, sometimes for years, and felt that it was a burden on them, although they were happy to do so and it was loving. They have that lived experience and they are looking to save their family from what their experience was. I think it is common that people feel some element of that when they are in a situation where they require heavy caregiving.
I think it also goes back to autonomy. People who are in their right mind and have the capacity to make this decision should have the autonomy to have their reasons and their value systems respected, whether or not we share them or see it in the exact same way.
Jack Abbott
Q
Dr Kaan: The thing I have been reading about that is concerning to me is the court approval that you seem to have written into your law. I heard your discussion this morning about how that might be done and whether it is a committee or the High Court and so on. I think that that is really going to limit access to this, and that makes the process a much lengthier one.
Again, these are people at the end of their life. People are not looking, by and large, to cut off a huge amount of their life; they are looking to shorten their death, not shorten their life. By making people go through a court appeal in addition to two qualified physicians, as well as the waiting period, I think that you are going to limit access for people who desperately want this option. It seems like that might be baked into your law, but I would say that that is a concerning feature to me. I think that you are going to limit access that way.
Dr Spielvogel: Something that it turned out was not in our law, but everyone thought that it was for a few years, and it really limited our practice, was that many people were under the impression that the physician could not bring up assisted dying with the patients, and that the patients had to bring it up themselves. That turned out not to be in our law, but that idea really hampered our ability to take care of patients, so I would strongly recommend that there not be anything like that in your Bill. People cannot make informed decisions for themselves if they do not know what their options are. While this is top of mind for all of you and for the doctors—we all know that this exists—even if this Bill becomes law, the general population is still not going to realise that it is an option.
I eat, sleep and breathe this. I am a primary care physician, and when I am going through the options with patients who are newly diagnosed with a serious life-threatening illness, I say, “Okay, here’s what disease-directed treatment would look like. We can continue with your chemo. Here are some side effects and complications that you might have, and here are the benefits of that. Here’s what palliative care or hospice care would look like.” Then I say, “I don’t know if you know this, but in our state we have this other option for people nearing the end of their lives when they have intolerable suffering. You can ask me to fill a lethal prescription for you to help end your suffering sooner.”
The number of times that people look at me and say, “You can do that? That’s an option here?” is astounding. I would say that nine out of 10 of patients I have conversations with have no idea that that is even legal. If they do not know it is an option, they are never going to ask for it. For physicians to do their jobs properly and deliver care to people, and for people to actually have a choice, physicians need to be able to discuss it with their patients.
Dr Kaan: I will just piggyback on that. I cannot count the number of times I have given a presentation or a talk to communities, and people—usually family members of someone who have died, not using this law—have come up to me afterwards and said, “Thank you for what you said. My loved one was interested in having this information, or wanted to talk to their doctor about it, but their doctor never brought it up, so we weren’t sure if we should be bringing it up.” It is a huge burden to put on patients and their loved ones if they have to bring it up themselves. I would highly caution against any sort of language that requires that, because it is just not fair to them. They are already going through so much and, as Dr Spielvogel said, you cannot have an informed decision-making discussion with a patient if they do not have all the options available for discussion.
The Minister for Care (Stephen Kinnock)
Q
Dr Kaan: That is a really important question, because this is a really important topic in the United States. Our laws are very clear that participation is voluntary, so there is no such mandatory training across medical training in general. It is always voluntary. If a physician or provider wishes to have training, they can seek it out. What is available and the standard of care differ from state to state. Certainly, in the state of Washington, where I am the medical director of the organisation that is most largely involved with this, the bulk of my job is doing training, mentoring and shadowing. There is no exam at the end of that process, but there is certainly shadowing and a feedback process.
I am also heavily involved with the Academy of Aid-in-Dying Medicine, which has been very active in creating professional training. We have a Journal of Aid-in-Dying Medicine, which is a peer-reviewed journal that puts out articles that are relevant to the topic. The Academy of Aid-in-Dying Medicine is now undertaking certification pathways, so each level of provider—social workers, chaplains, physicians and anyone else who might be involved in the aid-in-dying process—will be able to take these certifications. A more uniform education system will be available. We are just at the beginning of creating those, but it is very exciting, and we are very happy to have those out. A lot of resources are out there in the world already, in general, to train providers in how to do this well, and it would be really smart to have something in your Bill that outlines what the training should be, whether you will make it mandatory or voluntary and perhaps some sort of certification pathway.
Stephen Kinnock
Dr Spielvogel, I do not know whether you have anything new to add to that. If not, that is fine.
Dr Spielvogel: Without repeating anything that Dr Kaan said, I was just going to say that in addition to my assisted dying hat, I am also the programme director for the family medicine residency programme, so my main job is actually training young physicians who are becoming what you would call GPs.
We have instituted curricula as part of our residency programme here to train interested physicians in learning how to do assisted dying. We go through a whole process for that, including lectures, them shadowing me and me shadowing them, listening in on their conversations, giving them pointers and walking them through the steps of the process. They then do this with multiple patients through the course of their residency, so when they graduate, they feel confident in being able to offer this care. As with most medical training, this should be included in that part of the training process. All the other things, such as pathways in continuing medical education, are very important for physicians out there in practice who want to start doing this, but really getting this into medical training at its roots is vital for normalising the practice.
Speaking of which, something else I have heard a lot is that this might be distressing to physicians, or that physicians would not want to offer this care. I would like to say that 80% of our residents on our programme opt to receive this training. When we did a study on this of graduates from our programme who were continuing to offer assisted dying, 70% of the surveyed residents said that their assisted dying work was more rewarding to them than the rest of their primary care work—70% said that it was more rewarding.
I want to come back to the notion that physicians would feel burdened or that this would be some sort of psychological negative to physicians practising it, because it is actually quite rewarding work. It has led me to be a better physician to all my patients because it has helped me with having these difficult end-of-life conversations with them. That was a bit of a twofer, sorry—I added that on there.
Danny Kruger
Q
Dr Spielvogel: A lot. I have actually been quite surprised. Everybody is different. This is the whole point: different people have different goals, objectives and values. I have mentioned it to people who say, “No, I would never do that,” and I never bring it up to them again.
The Chair
Order. Do not interrupt the witness, please. Let him finish. You can then come back in with a question.
Danny Kruger
I apologise.
Dr Spielvogel: No problem. To answer your question more directly, I have had several people over the past couple of years who had no idea that it was an option and said, “That’s what I want to do.” They then went through the process with me.
Danny Kruger
Q
Dr Spielvogel: Yes. I think it could be made into a misdemeanour, a felony or whatever the equivalent is over there—sorry, I do not have the terminology. You could make it illegal to interfere with a patient’s right to make this choice. We stopped short of that in our most recent addendum to our law here, but I think that was a lost opportunity.
Danny Kruger
Q
Dr Kaan: You characterised it correctly in that I think that for people who have capacity, and who are making the decision to have this as an option, a part of their reasoning is that they want to save their family from an onerous caregiving experience. I think that is their right and it is part of their value system.
Of course, if that is the only reason, we are going to be exploring that. As Dr Spielvogel has said, that is a red flag. We are going to be exploring that, and exploring whether acceptable alternatives exist and what are the resources that the person may not be aware of. That is always part of the discussion. These discussions are always broad and multifactorial. But I think it is appropriate and okay for somebody to say, “I do not want my family to experience what I myself had to experience when I was caregiving for my elderly parents with dementia.” I have heard that many, many times. I do think people who have capacity should have their autonomy respected, in terms of the values that are driving them to make this decision.
We always want to work towards improving the social support for caregiving that exists in our society. There is certainly a lack of it here in the US, and probably there in the UK as well. Hand in hand with allowing people to make an informed decision about the option of having an assisted death, you should also be a strong advocate for social support and caregiving services at the end of life, because those really are important and needed.
Naz Shah
Q
Dr Spielvogel: That is a good question. I do not know the specific status of the Bill, but I would assume that it has itself undergone an assisted death at this point. That Bill is not really being supported by any of our advocacy groups or, by and large, the physicians who perform assisted dying, because it is, as you mentioned, very broad and not aligned with how we feel standard practice is going and where we would want it to go. That Bill did not receive support from many of us.
Naz Shah
Q
Dr Spielvogel: Can you clarify what you mean about kidney disease and the six-month prognosis, and the interplay with insurance there?
Naz Shah
Q
Dr Spielvogel: That is not factually accurate. When people go on dialysis, they automatically get Medicare, which is our version of the NHS, more or less. That is a national health insurance for people who are 65 and older or who have certain kinds of diseases. When you have end-stage kidney disease and you need dialysis, you automatically get Medicare and you get dialysis for the rest of your life, however long that is. People are often on dialysis for years. It is not that you are on it for six months and then you are off.
Naz Shah
Q
Dr Spielvogel: If you have a six-month prognosis to live, regardless of the condition, that would fall under this. That would make you eligible. That has nothing to do with insurance coverage for your condition. Insurance coverage is completely separate. It is not tied to this. All that prognosis does is to allow the individual to seek this care.
Naz Shah
Q
Dr Spielvogel: No. Insurance does not run out. There is maybe a misunderstanding of how medical insurance works in the US. Medical insurance does not run out. I think we are talking about two different things.
Naz Shah
Q
Dr Spielvogel: No, I actually do not think that you are right. When we are talking about lifesaving interventions such as chemotherapy or dialysis, that is not correct. They are bound by law to cover all things that are medically necessary. They do not say, “You have gotten six months of chemo. We are not paying for any more.” That is not how it works.
Sean Woodcock
Q
We heard from experts earlier about the paucity and lack of provision of care across the country. Certain people can get access to very good care, but too many people struggle to, particularly people of certain ethnic backgrounds, people on low income, and so on. Please correct me if I have misinterpreted your views, but from what you have said so far, it sounds as if you think that exercising the right to assisted dying because there is a paucity of appropriate care in your locality, or because you cannot afford it, is a perfectly legitimate exercise of autonomy, based on the society around you. Would that be a fair assumption of your views?
Dr Kaan: I think that is not an entirely fair representation of what I am saying. Yes, we do need respect for people’s autonomy and the reasons they may come to this choice, but I also think that from what I have heard this morning, it sounds like there is a conception that people choose assisted dying and then they do it. What I see, by and large, is that people want to have this as an option. It is an option among the other options of hospice palliative care or palliative treatments. The availability of this as an option often brings people tremendous relief from their suffering—just from the anxiety over how they might die, or what suffering might be in store.
I had a case of a woman with ALS, or amyotrophic lateral sclerosis. She was very afraid of how she might die with that condition, and she felt like she might suffocate to death. She was so focused on having the option of aid in dying because she was terrified of what might be in store for her. We were able to incorporate her into a hospice that offered comprehensive end-of-life care, including the option of aid in dying. We got her through the process, we had the medications available and she told me how much relief she felt from having it as an option, but ultimately she decided not to use it. She decided that she was getting really good care from her palliative care and hospice teams, and that her symptoms were well controlled. Although she was extremely grateful that she knew the medications were available should she decide to use them, she did not end up needing to use them or wanting to use them.
That is the reality of what is happening in a lot of cases where this is an option among other options. The availability of this option is, in and of itself, a palliative care treatment for many people. On whether or not wanting to avoid being “a burden” to a family member or to a caregiving team is a valid reason to pursue this, yes, I think that is a valid reason among many for people who have a value system that highly orders that.
Dr Spielvogel: I just wanted to add something, if I may. I have heard this argument—or rather, this concern—a few different times, and it strikes me as what is called a false dilemma logical fallacy: that there is either/or, when in reality there are many alternatives that people can choose from. Saying “If we don’t have all of these types of care, we shouldn’t offer this option” is like a hospital that does not have sufficient amounts of IV pain medications saying to a labouring woman, “Well, we don’t have enough IV pain medications, so we are not going to offer you a labour epidural, because that is a false choice.” That does not actually make sense.
Look at it from a patient’s perspective. Think about a patient who is dying from terminal cancer, is in lots and lots of pain and does not have any good options for their pain control. Imagine saying to that person, “We don’t have all of this care or this option over here available to you, so we are not going to allow you to have an assisted death”, even if they are telling you, “This is what I want. Why won’t you give this to me?”. It does not make sense to remove this as an option just because all of the options might not be available to everyone all of the time. It is a bit cruel when you think about it from a patient’s perspective.
The Chair
We have two minutes left before the evidence session finishes. Dr Simon Opher, please ask a very quick question and perhaps we could have a short response. I do not want to interrupt our witnesses at the end.
Dr Opher
Q
Dr Spielvogel: I literally had not formed any kind of opinion on this. When I was in medical school, it was not talked about. We did not talk about it; we did not discuss it; it just literally was not a thing, and then when it became law in California, I still had not really thought of it until my medical institution asked me whether I wanted to participate. I said, “Sure, I will give it a try,” and then with my first patient, I saw how amazingly transformative it was for him and his family. I had seen lots of death before then; I saw how tragic and traumatic it often was and how this was a dramatically different experience, and I became a convert.
Since then, I have seen many other physicians undergo the same journey with their patients. They have been very ambivalent to it until they have a patient who is asking for it. They go through it with that patient who they have known for a long time, and then they come out on the other end realising just how amazing this option is to the people who want it. Again, I am emphasising that this is a choice. For people who do not want this, they do not need to have it. For doctors who do not want to do it, they do not have to do it. But for the patients who want this, it is an incredibly powerful piece of agency.
Dr Kaan: The jurisdictions I work in have quite a bit more experience. In Oregon, of course, it has been legal since 1997, and it has been legal in Washington state since 2008. Both of those laws were actually started by voter referendum, so the general populace at large wanted this, and that is how these laws got started in both of those states. The general population has, by and large,, been supportive, and is growing more and more supportive of this as an option each year as it becomes normalised and clear that this is a practice which is careful, safe and has appropriate safeguards in place.
The medical community has also come along with that. In Washington state, we have now 15 years of practice with assisted dying. When this law was first passed, there was hesitancy in the medical community: this was an unknown, in many regards. We were the second state in the entire United States to pass this law and so the medical community was a bit hesitant. I will say that, in those last 15 years, we have seen a tremendous growth in the support of physicians and the medical community at large in wanting to make sure that this is an option for people and that they have access. Just in my own experience in Washington state—
The Chair
Order. I am sorry; I hope this does not sound rude, Dr Kaan —regrettably, there are procedures in Parliament that require me to do this—but we have come to the end of the allotted time for the Committee to ask questions. I thank the witnesses Dr Spielvogel and Dr Kaan for your contributions and time. This was very valuable.
Thank you to our witnesses and for all the contributions, and for your forbearance on this very sensitive subject.
Danny Kruger
On a point of order, Mr Dowd. I wonder, given the fact that we have had so many really helpful conversations and questions but not enough time for everybody to ask everything they wanted, whether it would be appropriate for Members who want to write to witnesses to ask for follow-up information or further questions could do so through the Committee, rather than us all deluging the witnesses with our own messages, some of which will duplicate each other. I appreciate that there is a capacity question for the Clerks, but it might be appropriate to ask the Speaker for a bit more resource to enable that to happen. I think that the hon. Member for Spen Valley broadly supports the idea; I do not know if others do, as well.
The Chair
Let us be clear. Witnesses can submit written evidence until the Committee reports to the House. It is open to Members to individually write to witnesses and invite them to give written evidence, if they so wish. My advice to the hon. Member is that if he wishes to look at this in a more formal way or through a more formal mechanism, he is to speak to the Committee Clerks, because it is beyond my remit.
We now come to motions (a) to (d) amending the sittings motion tabled by the Member in charge. I have selected the amendment tabled to motion (a) and will group all four motions and the amendment for debate. I will first call Kim Leadbeater to move motion (a), then Naz Shah to move the amendment. The scope of the debate is all four motions and the amendment.
Kim Leadbeater
I beg to move amendment (a), in the list of witnesses set out in the table in the Sittings Motion agreed by the Committee on 21 January 2025, after Mencap (Thursday 30 January, until no later than 5.00 pm), leave out “Representative of Senedd Cymru” and insert—
“Professor Emyr Lewis (Emeritus Professor, Department of Law and Criminology, University of Aberystwyth), Royal College of General Practitioners, Royal College of Psychiatrists.”
These amendments allow additional witnesses to be called to give oral evidence, including representatives from Disability Rights UK, the Royal College of General Practitioners, the Royal College of Psychiatrists, and an expert in Welsh devolution and constitutional matters.
As the sessions today have shown, hearing from expert witnesses is an extremely important part of this process, so I hope I have the support of the Committee in making these additions. On the motion to call additional witnesses tabled by my hon. Friend the Member for Bradford West, I respect the suggestion but I am confident that we have an eminently qualified witness to cover issues of coercion and domestic abuse in Professor Jane Monckton-Smith, who was suggested by my hon. Friend.
We have also heard today—and will hear from many witnesses over the next few days—from medical doctors, social workers, nurses, palliative care experts and geriatricians. That is around 50 witnesses in total. While I fully appreciate that a wide range of additional charities and organisations has valuable contributions to make, I would encourage them to submit written evidence so that the Committee has the benefit of their thoughts.
Regarding the start of the line-by-line scrutiny of the Bill, given the huge volume of evidence—both oral and written—that we have received and are still receiving, I have consulted with colleagues across the Committee and there is a consensus that having next week to absorb and evaluate the evidence, and to prepare any amendments in light of it, is extremely important. Consequently, we would begin line-by-line scrutiny on Tuesday 11 February, as per the amendment.
I hope that these amendments demonstrate the robust approach that the Committee and I are taking to our work, and I encourage colleagues to support them.
Naz Shah
I beg to move an amendment to amendment (a), at end insert—
“Richard Robinson, CEO of Hourglass, Cherry Henry-Leach of STADA, Standing Together Against Domestic Abuse ”.
I completely agree with my hon. Friend the Member for Spen Valley and I am grateful to her for adding Professor Jane Monckton-Smith to the witness list. I also absolutely agree that the evidence we receive is really valuable.
This is an amendment tabled yesterday by the Mother of the House, my right hon. Friend the Member for Hackney North and Stoke Newington (Ms Abbott) yesterday, to which I have added my name.
The reason for the amendment is that Hourglass focuses on domestic abuse of older people and it has particularly noted that the majority of such victims are female. Hourglass estimates that one in six elderly people are victims of coercion in the UK. This raises serious concerns that such people could be pushed into ending their lives if the Bill is enacted. Hourglass has not published a public opinion on the Bill.
Standing Together Against Domestic Abuse has said that
“We must echo concerns raised by the VAWG sector”—
the violence against women and girls sector—
“and disability activists about the bill’s current safeguards. There is insufficient clarity on what constitutes coercion and limited reflection on carer capacity to support someone terminally ill. Without robust measures, there is a real risk that assisted dying could be exploited as a tool for coercion or even femicide.
Statistics show that over 88% of unlawful ‘mercy killings’ are perpetrated by men towards women, often involving violent means. These troubling realities demand urgent consideration in shaping this legislation.
We also highlight the health sector’s role in identifying domestic abuse. With 80% of victim-survivors having their first or only point of contact in healthcare, it is critical that health professionals are equipped to identify and respond to abuse.
We call on the Government to ensure the proposed bill includes stringent safeguards and that healthcare systems are equipped to recognise and prevent the potential misuse of assisted dying. Femicide is already a crisis in the UK, and no law should inadvertently contribute to its escalation.”
All my adult life, I have had experience of dealing with domestic abuse and coercion, and I draw on that experience to speak to these amendments. Although Professor Jane Monckton-Smith is an expert, she is an academic. These two organisations work with people who have been victims of abuse.
In addition, we had an official meeting with the Clerk to discuss the proposals for Committee sittings. It was said at that meeting that we would only have witnesses who would give evidence, particularly in person, that would contribute to the deliverability and the workability of the Bill. Since then, we have had families added to the list of witnesses. That adds weight to the argument that we should have witnesses who are providing a service to victims directly.
Dr Tidball
I, too, support my hon. Friend the Member for Spen Valley and in particular I want to highlight the helpful addition of Kamran Mallick of Disability Rights UK. That augments an already comprehensive list of expert disabled people, which includes: Professor Tom Shakespeare, an internationally renowned disability rights academic; Dr Miro Griffiths, a Disability Studies scholar at the University of Leeds; and Chelsea Roff, the founder of Eat Breathe Thrive. On the panel, we will also have a representative of the Equality and Human Rights Commission, who will be able to give a good overview on the intersection between protected characteristics. Finally, there will be Jon Sparkes, the representative of Mencap.
I am really pleased that my hon. Friend has worked so hard to ensure that the voices of disabled people are integrated across a number of the panels that we will see over the next two days, and the addition in her amendment is really helpful. I commend her for it.
Kit Malthouse
I, too, support the amendment proposed by the hon. Member for Spen Valley, and in particular the addition of Jane Monckton-Smith. I have read her book; it is definitely worth a read and is pretty alarming. I will address why I do not think the Committee should support the amendment to the amendment tabled to add other witnesses.
Jane Monckton-Smith has done a huge amount of research in the area, and as well as being an academic who specialises in coercion and femicide—and the impact that coercion has on femicide—she is a former police officer, so has significant frontline experience. As part of her research she will have spoken with and interacted with many of the groups that the hon. Member for Bradford West is proposing to include—although maybe not specifically. I would prefer it if we stuck with the list that the hon. Member for Spen Valley has put forward, and not add the additional witnesses proposed.
Lewis Atkinson
I agree with my hon. Friend the Member for Spen Valley. Having agreed to extend the time on Thursday to hear devolution issues and from the Royal College of General Practitioners and the Royal College of Psychiatrists, by adding two further witnesses, the amendment to the amendment would reduce the time available on those options. In an ideal world we would like to hear from all sorts of people. The option of written evidence is available. We have got other evidence, and I want to ensure that Thursday’s session is focused on the proposals that my hon. Friend has made.
Naz Shah
There is nothing in my amendment that suggests Professor Monckton-Smith is not capable in her expertise. I am asking for other expertise to be brought to the table. Yes, there is the argument that people can submit written evidence—but so could every witness we have heard from today, and that we will hear from tomorrow and the day after. If that is the yardstick, is this just a tokenistic exercise? I would argue that for women in particular, who are the victims of domestic abuse—
Dr Tidball
I note that Laura Hoyano, who is giving evidence on Thursday, is a domestic abuse barrister. She has also been involved in inquiries on child sexual abuse, and has a great range of experience in that area. She will bring that to the table as a practising barrister working closely on such cases.
Naz Shah
I welcome my hon. Friend’s intervention and I recognise Laura Hoyano’s expertise. I would respectfully push back that, as a victim of domestic violence—as a person who has experienced it and campaigned on it for all my adult life—there is a difference between an academic who has studied it and people who have worked with victims, in particular elderly women. The expert is a barrister with experience of young people and children and domestic abuse, and Professor Monckton-Smith is also an academic—yes, she has been a police officer—but I would value a witness who has worked with victims of domestic abuse. That is all I have to say on it.
Question put, That the amendment be made.
Question negatived.
Main Question put and agreed to.
Amendments made: (b), in the list of witnesses set out in the table in the Sittings Motion agreed by the Committee on 21 January 2025, after
“Professor Aneez Esmail (University of Manchester)”
insert “Disability Rights UK”.
Amendment (c), in the list of witnesses set out in the table in the Sittings Motion agreed by the Committee on 21 January 2025, after
“Dr Lewis Graham (University of Cambridge),”
leave out “John Kirkpatrick” and insert “Baroness Falkner”.
Amendment (d), in paragraph (2) of the sittings motion agreed by the Committee on 21 January 2025, after “Wednesdays” insert
“starting on 11 February 2025”.—(Kim Leadbeater.)
Ordered, That further consideration be now adjourned. —(Kit Malthouse.)
5.30 pm
Adjourned till Wednesday 29 January at twenty-five minutes past Nine o’clock.
Written evidence reported to the House
TIAB 01 Ben Scott
TIAB 02 Michael Vidal
TIAB 03 Compassion in Care
TIAB 03(a) Compassion in Care (further evidence)
TIAB 04 Dr George Gillett, an NHS doctor and psychiatrist
TIAB 05 Dr Stephen Hutchison MD
TIAB 06 Dr Andrew Boorne
TIAB 07 Jess Carrington, Registered Social Worker and Best Interests Assessor
TIAB 08 Greg Lawton MPharm MRPharmS FFRPS MBCS LLM, Barrister and Pharmacist
TIAB 09 Australian Care Alliance
TIAB 10 Dr Peter Knight
TIAB 11 Dr Isky Gordon FRCR, FRCP, Emeritus Professor Paediatric Imaging, UCL, London
TIAB 12 Dr Peter O’Halloran, RN, PhD, Registered Nurse, Senior Lecturer, Queen’s University Belfast, Researcher in chronic illness, palliative and end-of-life care
TIAB 13 Rose
TIAB 14 Dr Rachel Fisher
TIAB 15 Nigel Andrew Gordon Jones, a retired Consultant General Surgeon
TIAB 16 St Gemma’s Hospice
TIAB 17 Sir Nicholas Mostyn
TIAB 18 Leah Locke
TIAB 19 Alison Taylor
TIAB 20 Dr Katharine Crossland
TIAB 21 John Forrester
TIAB 22 Don Stickland
TIAB 23 Christina Blandford-Beards
TIAB 24 Society for the Protection of Unborn Children (SPUC)
TIAB 25 Catholic Bishops’ Conference of England and Wales
TIAB 26 British Association of Social Workers
TIAB 27 Plunkett Centre for Ethics: A centre of Australian Catholic University located at St Vincent’s Hospital Sydney
TIAB 28 Dame Sarah Mullally, Bishop of London, Lead Bishop on Health and Social Care for the Church of England and former Chief Nursing Officer for England on behalf of the Bishops of the Church of England and the Archbishops’ Council
TIAB 29 Cicely Saunders International
TIAB 30 Lejeune Clinic for Children with Down Syndrome
TIAB 31 Voice for Justice UK
TIAB 32 Get on Downs - a Down Syndrome Support Group
TIAB 33 British Medical Association (BMA)
TIAB 34 Portsmouth Down Syndrome Association
TIAB 35 Better Way campaign
TIAB 36 Hospice UK
TIAB 37 Association of Catholic Nurses for England and Wales
TIAB 38 East Midlands Palliative Medicine Consultants and Specialty Doctors
TIAB 39 Marie Curie Palliative Care Research Department, University College London (UCL)
TIAB 40 Humanists UK
TIAB 41 Nuffield Council on Bioethics’ (NCOB)
TIAB 42 Marie Curie
TIAB 43 LOROS, the Leicestershire and Rutland Hospice
TIAB 44 Professor Emeritus Sam H Ahmedzai
TIAB 45 Professor Nancy Preston, Professor of the International Observatory on End of Life Care, Lancaster University; and Professor Suzanne Ost, Law School, Lancaster University
TIAB 46 Professor Alex Ruck Keene KC (Hon)
TIAB 47 Anureg Deb and Dr Lewis Graham
TIAB 48 Australian Centre for Health Law Research, Queensland University of Technology, Australia
TIAB 49 The Bios Centre
TIAB 50 The Orders of St John Care Trust
TIAB 51 Living and Dying Well
TIAB 52 Professor Katherine Sleeman, King’s College London
TIAB 53 British Islamic Medical Association (BIMA)
TIAB 54 Joint written evidence submitted by Chelsea Roff (Eat Breathe Thrive, UK), Dr Angela Guarda (Johns Hopkins University School of Medicine, US), Dr Philip Mehler (University of Colorado School of Medicine, US), Dr Patricia Westmoreland (University of Colorado, US), Dr Scott Crow (University of Minnesota, US), Dr Catherine Cook-Cottone (University at Buffalo, SUNY, US), Dr Anita Federici (York University, Canada), and Dr Agnes Ayton (Oxford Health NHS Foundation Trust, UK)
TIAB 55 Professor Allan House
TIAB 56 National Care Forum (NCF)
TIAB 57 AtaLoss
TIAB 58 Compton Care
TIAB 59 Dr Odette Spruijt, Medical Director, Launceston Specialist Palliative Care Service
TIAB 60 Rachel Pegrum, Independent Social Worker
TIAB 61 Abdul Rahman Badran
TIAB 62 Alan Thomas, Professor of Old Age Psychiatry, Director of Brains for Dementia Research, Translational and Clinical Research Institute, Faculty of Medical Sciences, Newcastle University
TIAB 63 Dr Julian Neal
TIAB 64 Dr Raymond Towey
TIAB 65 Multiple System Atrophy Trust
TIAB 66 Dr Adrian Tookman
TIAB 67 Royal College of Psychiatrists
TIAB 68 UK Medical Freedom Alliance
TIAB 69 Association of Anaesthetists
TIAB 70 Catholic Union of Great Britain
TIAB 71 My Death, My Decision
TIAB 72 Health Advisory and Recovery Team (HART)
TIAB 73 Kyam Maher MLC, the Attorney-General of South Australia, in his capacity as a member of the Legislative Council of South Australia
TIAB 74 Dr Calum MacKellar, Director of Research, Scottish Council on Human Bioethics
TIAB 75 Christian Medical Fellowship
TIAB 76 Christian Medical and Dental Association of Canada
TIAB 77 Christian Legal Centre
TIAB 78 Written evidence submitted on behalf of a group of anorexia nervosa sufferers and carers
TIAB 79 Dr Angelika Reichstein, Associate Professor in Law, University of East Anglia
TIAB 80 Dr David Randall
TIAB 81 Cruse Bereavement Support
TIAB 82 Compassion in Dying
TIAB 83 General Medical Council (GMC)
TIAB 84 Pathfinders Neuromuscular Alliance
TIAB 85 Royal Pharmaceutical Society
TIAB 86 Motor Neurone Disease Association
TIAB 87 Dr Simon Eyre
TIAB 88 Macdonald Amaran
TIAB 89 Patrick Pullicino
TIAB 90 Luis Espericueta, Researcher and lecturer in bioethics at the University of Granada, Spain
TIAB 91 Healthcare Professionals for Assisted Dying
TIAB 92 PSP Association (PSPA)
TIAB 93 Association for Palliative Medicine of Great Britain and Ireland (APM)
TIAB 94 Academy of Medical Royal College's
TIAB 95 Care Not Killing
TIAB 96 Dr Alexandra Mullock, Senior Lecturer in Law
TIAB 97 Rt Hon. Sir Stephen Sedley
TIAB 98 Carole O’Reilly
TIAB 99 Dr Hannah Denno
TIAB 100 Prof B Anthony Bell MD, Neurosurgeon, University of London
TIAB 101 Matthew Hoyle, Barrister
TIAB 102 Royal College of Nursing
Terminally Ill Adults (End of Life) Bill (Fourth sitting)
Wednesday 29th January 2025
(1 week ago)
Public Bill CommitteesRead Full debate Terminally Ill Adults (End of Life) Bill 2024-26 Read Hansard Text Read Debate Ministerial Extracts Amendment Paper: Public Bill Committee Amendments as at 29 January 2025 - (29 Jan 2025)
The Chair
Good morning, ladies and gentlemen. We are now sitting in public and proceedings are being broadcast. I remind Members to switch off electronic devices.
We will hear first this morning from three witnesses, all of whom join us online from Australia, where it is either early or late evening: Dr Greg Mewett, a specialist palliative care physician; Dr Clare Fellingham, deputy director of medical services for Royal Perth hospital in Western Australia; and Dr Cam McLaren, an oncologist in Australia and New Zealand. Will Members please keep questions as short as possible? We have until 10.25 am for this session, so we have very limited time.
Dr Mewett, would you be kind enough to introduce yourself and make a very brief opening comment?
Dr Mewett: I am Greg Mewett. I am a palliative care physician of many years’ standing. I live in Ballarat in central Victoria. I have been involved as a palliative care physician over many years and became involved in the Voluntary Assisted Dying Implementation Taskforce, which was charged with bringing the enactment of legislation into practice. I subsequently incorporated voluntary assisted dying into my specialist palliative care practice, and more recently have been appointed as a member of the Voluntary Assisted Dying Review Board in Victoria. I am here to assist in whatever way Committee members feel I can help.
The Chair
The Committee is deeply grateful to you. Dr Fellingham.
Dr Fellingham: My name is Dr Clare Fellingham. I am originally from the UK. I now live and work in Western Australia as a consultant anaesthetist. I also have a clinical fellowship in palliative care, and I am due to complete a master of bioethics—the study of applied ethics—this year. I chair our regional clinical ethical committee. I led the clinical implementation of voluntary assisted dying across my health service in 2021 and then became a voluntary assisted dying practitioner. I was a high-volume practitioner for two years, and I have recently scaled that back to work more with VAD Australia and New Zealand, which is the peak body that Dr Cam McLaren set up to try to represent and promote assisted dying throughout Australia and New Zealand.
I would like to contribute anything that I can, from a multifaceted position but with lots of lived experience in this space. I begin by stressing to the Committee that the law you are proposing only applies to people who are terminally ill. It is exactly the same as the laws that apply across Australia and New Zealand and very unlike the more permissive models that exist in Europe and Canada. It is so important to keep that in sharp focus. We are talking about giving dying people who do not have a choice, a choice, but it is not a choice between—
The Chair
I am sure we will come back to that. Dr McLaren.
Dr McLaren: I am Dr Cam McLaren. I am a medical oncologist and an early adopter of voluntary assisted dying. I was not involved with the campaigning for voluntary assisted dying. On the eve of its introduction in Victoria, I did the training thinking that it was just an extension or the next step in patient-centred care, as this was a patient-led adjustment in our legislation. In Victoria, our law requires a specialist in the area of disease that the patient has to be one of the two assessing doctors, and due to the low uptake among my peers, I became quite exposed to this. I have been involved in over 300 cases of application for voluntary assisted dying, and through that experience have contributed to the development and implementation of voluntary assisted dying laws in other states of Australia and also in New Zealand. I have spoken on the Isle of Man and at the World Cancer Congress in Switzerland. I am a founder of Voluntary Assisted Dying Australia and New Zealand, where I saw a space to improve the quality and safety of the provision of voluntary assisted dying care from a provider perspective. Thank you very much for having me.
The Chair
Colleagues will have noticed that there is a slight delay on the line. Take account of it when asking questions and ask them briefly, please.
Sarah Green (Chesham and Amersham) (LD)
Q
Dr Fellingham: Certainly. The training is very stringently developed, and very rigorously tested. Our management training practice, which is required of all doctors who want to practice assisted dying, was developed by our colleagues in the Australian Centre for Health Law Research at the Queensland University of Technology. It drew on extensive research that the group had conducted around the world to create an online training package that takes at least a day to complete and covers a huge amount of things that are of great concern. Not unsurpris-ingly, it includes things like how to assess capacity, how to detect coercion, how to assess for voluntariness, and how to determine the various different eligibility criteria that apply in our Western Australian law.
To be able to access that training and become a voluntary assisted dying practitioner, a person already has to be a doctor of quite some standing in their own specialty. They have to be a consultant in a specialty with at least one year of full-time practice under their belt, or a general practitioner with at least 10 years of broad experience. We are not talking about junior doctors being able to offer this; we are talking about doctors of significant clinical standing with a very broad range of patient experiences. They put themselves forwards and do that training, and then that training has to be refreshed and updated every three years.
I have five hospitals in my health network, and together with my colleagues I developed a very comprehensive package of training, education and awareness that is tailored for people who may have a role in this at various different levels, from a nurse on the ward all the way through to someone who actively taking part in the process. A very wide range of documents and training packages have also been developed by our Department of Health. In addition, all practitioners who work in this space are invited to become members of our community of practice, where we share peer education and experiences. We also have guest speakers from national and international viewpoints to continue to educate us as a group, and to ensure that our practice is consistent and in line with local and international standards.
The Chair
Do either of the other witnesses want to come in on that?
Dr McLaren: When we started this in Victoria, we saw a bit of a gap with the implementation. A lot of the education was surrounding the legalities of providing an assessment service in a way that conformed with the legislation, rather than that focused on the clinical skills and applications. I am quite proud of the role that we have had in rolling that out, in providing that peer experience, and in focusing more on some of the clinical skills that apply within a VAD context.
Naz Shah (Bradford West) (Lab)
Q
Dr Fellingham: A point of clarification: I work in Western Australia, rather than Victoria, but I can give you a view for Western Australia, which is significantly larger, so the problem you have alluded to is much more complicated. Would you like me to speak about the Western Australian context?
Naz Shah
I was talking about southern Australia, in particular. That is fine; we can move on. Thank you.
Dr McLaren: I can speak to the Victoria question, if you prefer. To answer your question, we have a state-wide service that supplies the medication across the state. Medication for pain relief is available through standard pharmacy access, so there are no barriers to accessing medication for palliative purposes in rural Australia. It is quite hard to get voluntary assisted dying medication dispensed to Mildura, which is many hours away from the single-state pharmacy, so access is more difficult for voluntary assisted dying than for palliative medication.
Naz Shah
Q
Dr Mewett: From a palliative care perspective, like Cam and Clare, I have been involved in assessing and having discussions with many, many patients who have requested assisted dying. These patients come from a whole range of socioeconomic backgrounds. In fact, if anything, they tend to come from a perhaps slightly higher, more well-educated background. There is no evidence in our jurisdiction of Victoria, where we have had five and a half years’ experience, that people who are underprivileged, less educated or vulnerable in some other way have readier access to or apply more for VAD.
The case you alluded to, like many cases that are reported from Canada, is certainly tragic in its own way, but such cases are an absolute minority compared with patients who are genuinely determined to have a choice about the way they die and when. Those are separate issues: one is a social welfare issue, and the other is a VAD issue. A patient such as that would not be found eligible, unless he was eligible under the strict criteria that apply in the state in which he lived.
Dr McLaren: As Greg touched on there, when that gentleman applied for voluntary assisted dying, that may have been one of his drivers, but it certainly would not have made him eligible. He did not access voluntary assisted dying, so the system worked. We do see higher socioeconomic status patients applying for voluntary assisted dying. That is evidenced in our Voluntary Assisted Dying Review Board reports, which show a greater proportion of people with higher levels of education. That data is freely available through the Victoria Government website.
The Chair
Dr Fellingham, you had your hand up.
Dr Fellingham: Ms Shah asked for some evidence, and I have just looked this up. Our Voluntary Assisted Dying Board reports from Western Australia are also freely available, publicly searchable documents. Each year, the board asks the patients’ reasons for accessing voluntary assisted dying. In order of commonality, the only ones over 50% are
“Loss of dignity, or concern about it…Loss of autonomy, or concern about it”,
and
“Less able to engage in activities making life enjoyable, or concern about it”.
What that reflects to me is that the type of people who seek access to assisted dying are those who tend to be, as my colleagues said, more health literate and more socioeconomically advantaged than your average healthcare consumer, and people for whom the existential reasons that upset them about their disease process are the primary drivers for seeking access to voluntary assisted dying. It is very rarely the absence of service provision or because they feel that they do not have any other choice.
Dr Marie Tidball (Penistone and Stocksbridge) (Lab)
Q
Dr McLaren: Throughout the roll-out of the voluntary assisted dying legislative process in the other states that I have been involved with across Australia, the main concern that has come from disability organisations is that they do not want to be found eligible for the sole reason of their disability, and that is involved in all our legislation—that people are not eligible purely on the basis of that. They also voice a very strong concern that they do not want to be found ineligible based on their disability either. They would like to have access to this in the event that they have a disability but then also develop a terminal illness. That has been a very strong voice throughout all the debates in Australia and New Zealand.
Dr Mewett: I wanted to reiterate that, of the 13 of us who were representing various people on the implementation taskforce in Victoria, we had one disability advocate who was a strong voice in ensuring that the laws were not discriminatory in any way against patients with any degree of disability. I would always indicate that this is a voluntary assisted dying programme. The word “voluntary” is not used often enough in this space.
The Chair
Dr Fellingham, do you wish to add to that?
Dr Fellingham: Just briefly—I will go back to the point that I was making in my introduction. It is extremely important to keep in very sharp focus that the law you are proposing in the UK is similar to the laws that exist in Australia and New Zealand and most of the laws in the United States, but it only applies to people who are terminally ill, and therefore people who only have a primary disability, a primary mental health condition, a primary dementing condition or a non-terminal condition such as anorexia or a whole host of other conditions, who are found eligible in the more permissive laws, simply would not be able to be found eligible. It is really, really important to keep it in very sharp focus that this law is only for terminally ill people.
Dr Tidball
Q
“For the avoidance of doubt, a person is not to be considered to be terminally ill”
just by those statuses.
I am very interested to hear about the implementation taskforce. I am personally keen that if the Bill passes into law, we monitor the impact on disabled people on an ongoing basis. Do you have any recommendations for how we can ensure that disabled people have a strong voice in that process, to keep the provisions in check and understand the impact, if any, on the culture within the NHS and other services?
Dr Mewett: Only that if there is an implementation taskforce—most legislation requires an implementation period; in our case, it was 18 months—a strong disability advocate is involved in it.
Dr McLaren: It would be to plant the seed of funding for research throughout the implementation and early stages of voluntary assisted dying legislation. Conducting qualitative research particularly in this area would be very revealing, to understand not only everyone’s reasons for applying for voluntary assisted dying but also those of marginalised groups and whether there are any other factors influencing their decisions.
That also extends to research conducted in culturally and linguistically diverse populations. We have a concern about health awareness, and particularly that what we affectionately call our gag clause—whereby our medical practitioners are not able to initiate conversations with patients about voluntary assisted dying—unfairly disadvantages people from culturally and linguistically diverse populations and those who have lower levels of health literacy in accessing information about the care available to them and their health options. We feel that that comes mainly from discussions with general practitioners. Not allowing those general practitioners to discuss the options with them certainly does not do them any favours.
Dr Fellingham: Both my colleagues have made excellent points that I was going to make. I think they have covered it very well.
Daniel Francis (Bexleyheath and Crayford) (Lab)
Q
Dr McLaren: We are undergoing our review at the moment. It was meant to commence after the first five years of operation of the Voluntary Assisted Dying Act in Victoria. That review has yet to be tabled or published. Certainly, the recommendations that we have submitted to it involve reducing or removing the so-called grace period, or waiting period. My experience, and that of an almost homogeneous group of practitioners, is that patients serve their own lock-out periods, grace periods and periods of reflection, as I believe you have called them, before applying. Subsequently, there are several logistical pauses throughout the process, which also instigate their own grace periods. The addition of further periods for reflection is, I think, superfluous and unnecessary.
Secondary to that, in all our Bills and Acts, we have an ability to bypass those waiting periods. Forgive me if I am wrong, but I did not see the capability to bypass any of those in your current Bill. If the person has a prognosis of less than seven days, they should be able to be expedited and not serve that time. I do not see the purpose of putting extra time on these people to apply for this.
I always say that people do not know that they have six months to live until they have six weeks to live. We as oncologists do not know that either. In a matter of one CT scan, we can change a person’s prognosis from 18 months to three months. All of a sudden, they start thinking about how they see their life ending, and then they have to engage in a process of application. Out of that three-month period, it might take a month to apply. My recommendation has always been to increase the prognostic eligibility criteria from six months to 12 months and to remove waiting periods, which patients will place on themselves regardless of the legislative requirements.
The Chair
Dr Mewett, you are nodding.
Dr Mewett: Yes—not nodding off, you will be pleased to know.
The Chair
It is not that late yet.
Dr Mewett: As I am a member of the Victorian VAD review board, as well as being here as a palliative care practitioner, I want to give you an insight. The review board is now a statutory body under the Victorian Act. We are in the process of finalising a number of recommendations to our Health Minister to make some adjustments to the law. I am not at liberty to go into detail, but many of those things, such as the gag clause and the waiting period, are really up for challenge. They have been shown not to be safeguards but, in fact, impediments and barriers to equitable and compassionate access to the scheme.
Dr Fellingham: I agree with Dr Mewett. They seem like a good idea, but they do tend to be barriers more than safeguards.
Daniel Francis
Q
Dr Mewett: One has to understand that although there are some broad similarities, there are a number of differences state by state, and now the Australian Capital Territory has legislation. In the ACT, they have passed legislation, although it has yet to come into practice, whereby one of the two assessing practitioners could be a suitably qualified nurse practitioner. In all the other states of Australia, each of the assessing practitioners has to be medically trained. Different states have different requirements. There is also, in some states, the ability for a suitably qualified nurse practitioner to be the administering practitioner in the case of practitioner-administered voluntary assisted dying.
The Chair
For the benefit of our guests, the next questioner, Stephen Kinnock, is our Health Minister.
The Minister for Care (Stephen Kinnock)
Q
Dr Fellingham: Our law was passed on 19 December 2019 and came into effect on 1 July 2021. Ostensibly we had an 18-month period, but of course something fairly dramatic in health happened in 2020. Despite that, what happened at Department of Health level began first. The Department of Health set up an implementation leadership team and gathered specialists together from all across Western Australia in various different aspects. They had eight different workstreams looking at the eight different parts of the Act that they had to operationalise—the pharmacology, the substance and what that was going to look like, the doses and how it was going to be administered, the set-up of the pharmacy, and things like that. Each of those eight workstreams worked everything out at a Department of Health level.
Approximately six months before the law was enacted—on reflection, that was probably not long enough, but covid was very much complicating everything at the time—they set up a working group with the clinical leads in the various health service provider organisations. We were then tasked with taking that broad overview and turning it into a service at the point of delivery, on the understanding that we understood the nuances and expectations of the different hospitals and health systems in which we operated.
I will not lie: it was an enormous task. I leant very heavily on our wonderful Victorian colleagues who had gone first. I do not know what I would have done if I had been the first to pave the way. Subsequently, I have been able to offer that level of assistance to each of the other states and territories that have gone after Western Australia, and then of course to the UK, Scotland and Jersey, which I have been working with quite a lot. There is a wonderful international, collaborative sense of information sharing and wanting to get this right, learning from experience and not reinventing the wheel.
The vast majority of the laws that apply across the whole of Australia and New Zealand are quite similar, and they are similar to what you are planning to legislate for in the United Kingdom. A lot of fantastic groundwork has been laid already, and it can be done even in a challenging healthcare context, like covid or our resource limitations.
Stephen Kinnock
Thank you very much for that very comprehensive answer. Is there anything that our other guests would like to add?
Dr Mewett: As I was on the very first implementation taskforce, running blind, I probably could not add much more, except to say that it can be done. One has to focus on the readiness of practitioners, the readiness of health services, the readiness of the population and a whole range of other issues, including the pharmacy service. We have a state-wide care navigator service, which assists patients and doctors in the space. We had to set up a lot of services, and that gave us the time to do so. It was very successful and very challenging, but fortunately we did not have covid in our way.
Danny Kruger (East Wiltshire) (Con)
Q
Dr Fellingham, I was interested in your point about the distinction between the Australian model and the model in Canada and elsewhere. You are suggesting that most people who seek assisted death do so for what I think you called “existential reasons”. It is certainly not because of an absence of care, although we do see evidence of that in many countries. Can you expand on why you think it is so important that we have the terminally ill definition in the Bill, rather than recognising pain and suffering as the reason for seeking assisted dying, when I think most of the public who support a change in the law do so because they recognise that many people would naturally want to avoid pain and suffering? Yesterday, we heard from people who said that that is the right reason and that we should write that into the law. Why should we not do that?
Dr Fellingham: That is a very good question and I am grateful that you have asked it. We absolutely have to keep at front and centre that pain and suffering are primary drivers for people seeking access to relief of suffering, whether that is at the end of life or in any interaction that they have with healthcare providers. I speak to remind you that these laws apply to terminally ill people, because I feel that that is a lot easier for us to understand and get our heads around, but it does not detract from the fact that suffering can be a feature of non-terminal illnesses. There are people who can suffer terribly for very long periods of time—dementia being a clear example, but one that would be incredibly challenging to legislate for at this early stage.
What is interesting about the parallels you draw between pain and suffering is that it is a quite common conception that pain is suffering and suffering is pain, and that people seek access to relief of suffering at the end of life because it is the physical symptoms that are the most debilitating. Of course, the physical symptoms can be horrendous—pain, nausea, vomiting, anorexia; there are a multitude—but they are symptoms that we tend to be really quite good at treating. We have a whole range of medications in our palliative care spectrum that are very good at treating those physical symptoms, so it is quite rare that people prioritise those when thinking about this.
But suffering is subjective and it is context-dependent. What suffering is to me might be completely different from what it is to you, even if we are suffering from what looks to be, from the outside, the same disease. Suffering and distress—the thing that makes us human: the existential overlay of our own interaction with the world and how that is impacted by our disease process—is an incredibly personal journey and one that is extremely challenging to palliate, and it is very, very distressing for patients, their families and their practitioners if we cannot support people who are suffering at the end of life. Does that answer your question?
Danny Kruger
Q
Dr Fellingham: In our law, in Western Australia, one of our eligibility criteria is that a person is suffering intolerably, in a manner that they consider intolerable, and that we have taken all reasonable steps to alleviate. The important thing about suffering is that it is a personal experience. It is not mine to judge as a clinician; it is mine to delicately and expertly tease out of a patient and to attempt to mitigate and treat to the best of my ability. Yes, suffering absolutely is what the patient says it is, and these laws are designed to honour individual patients who are dying. They are not designed for us as practitioners or clinicians looking in from the outside; they are designed to be supportive of an individual patient’s illness journey, and only they can know what the experience of that is.
Dr McLaren: It is a very good question, Mr Kruger. I think one of the distinctions is where the point of hope is and where the point of no return may be for that suffering. If you were to say that patients or people may apply for this or self-confess suffering in the absence of an end-of-life condition, that leads to questions about whether it applies to a 21-year-old with a decompensated mood disorder that could be treated or improved. When we are talking about patients within the last six months of their life, that suffering is very hard to come back from in the time that is given to them. It is about that recognition of the point of difference between hope for the future and a different type of hope—hope for improvement in symptoms or control of the situation, but not for physical improvement or a return to normal function or living. That is the real difference between legislating purely on the basis of suffering, versus in the context of suffering that will not get significantly better.
The point is that the line must be drawn somewhere. We have seen patients who have been ineligible under our laws where we have found immense suffering, and that is a difficult space to navigate in its own right, but those cases are going to happen regardless of where the line is drawn, and it needs to be in a place where people are comfortable to navigate on one side or the other. That is where the clinical education comes into the process, in terms of how we best manage that, recognise the suffering in the individual, try to make things better and work hand in hand with palliative care and other colleagues to try to improve symptoms for the patients who are not eligible under these laws.
Dr Mewett: As a palliative care physician, I spend all my professional life addressing people’s suffering in the context of an advanced, progressing, incurable illness. Palliative care, of course, approaches that from a range of different angles. I see VAD—assisted dying, voluntary —as an end-of-life choice among a range of end-of-life choices that people may or may not make. A minority of our patients will take that choice and have some control. They require and should have excellent palliative care up to the time that they die, whichever way they decide to die.
I think we should understand that despite the best palliative care in the world, there are still patients who suffer uncontrollably, unremittingly and intolerably. I believe that it is that small minority of patients who should have a legal option to take control of that stage when it is irreparable. It is not incompatible with palliative care; it is part of palliative care and an end-of-life choice, and not the philosophy of care that palliative care is.
The Chair
Colleagues, if we are to try to get everybody in, I will have to confine Members to one question each from now on. Panel, if you could, be kind and, without denying us the information we need, keep your answers as brief as possible.
Dr Simon Opher (Stroud) (Lab)
Q
Dr McLaren: Again, each of our states, as well as the Australian Capital Territory, has different legislation and therefore different processes. In broad speaking terms, say in Victoria, for example, a patient will express their wish to engage in voluntary assisted dying independently, and often they are connected to the state-wide patient navigator service, which will connect them with a doctor to receive that patient’s first request and become their co-ordinating medical practitioner. That doctor will then conduct the patient’s co-ordinating assessment and determine whether they believe the patient is eligible or ineligible. If the patient is eligible, the doctor will refer them on to a consulting doctor, or a doctor who acts as the consulting doctor, for a consulting assessment.
If that process is also approved and the patient is found eligible, they meet again with the co-ordinating medical practitioner to make a written application to engage in voluntary assisted dying. That process then goes to our review board, to ensure that it is compliant with the legislation, before we can apply for a permit to prescribe the medication. The permits are specific to our state; many other states, such as Dr Fellingham’s, do not require a specific permit for individual prescription. The permit will come back within three days, and then we write a prescription, which goes to our centralised pharmacy service. The pharmacy will wait for the patient or the contact person to contact the pharmacy and organise the delivery or dispensing of the medication.
In Victoria, self-administered oral medication will be dispensed to the patient, and that is then their property; they may use it immediately or never use it—that is completely up to them. They do not require medical attendance at that time, although I have provided that on many occasions, sitting with a patient and their family as the patient has taken their medication and died. If the medication is not used, the contact person nominated by the patient is legally required to return the medication to the pharmacy.
If the patient is unable to ingest or digest oral medication, we can apply for practitioner administration, which I believe your Bill does not currently provide for. This authorises a co-ordinating medical practitioner to administer the medication, either via a percutaneous endoscopic gastrostomy feeding tube or by other means, including intravenously, to the patient to bring about their death. I have certainly done that—I do not keep count, but I have engaged in that many a time.
Jack Abbott (Ipswich) (Lab/Co-op)
Q
Dr Fellingham: In the UK you are missing a number of the challenges that we have, such as the geographical challenges in a state as vast as Western Australia. You also have a golden opportunity to look, as you are, across every jurisdiction that already has laws in operation and cherry-pick the best bits of what is working well in those jurisdictions, and so create the very best, most robust and most patient-centred legislation you can.
The healthcare systems are broadly similar. We are both first-world, developed western countries. We are still operating in a context of resource limitation, but not resource limitation that is so prohibitive that it would make it particularly difficult to enact a law in the UK. The United Kingdom would be broadly able to follow any of the laws that exist in Australia and implement them very successfully.
Kim Leadbeater (Spen Valley) (Lab)
Q
Dr Mewett: There is no doubt that traditionally palliative care has eschewed any idea of voluntary assisted dying, for a number of historical reasons that I have spoken about in other fora and will not go into now. But it is changing, and there is a general change in attitude, especially among the younger palliative care training doctors and young clinicians, who see this as part of patient-centred care, honouring the patient’s autonomy and choice, while still addressing deeply their concerns and suffering in pain management and so on.
That will see a change. I do understand where it has come from. When one looks at it almost forensically, it does not stack up and will continue not to stack up to have someone saying, “Well, VAD is not part of palliative care.” VAD is part of patient choice and it will be part of palliative care ongoing. That will evolve over time.
I am sorry but I did not quite catch the meaning of the question about the multidisciplinary aspect, Ms Leadbeater.
Kim Leadbeater
Q
Dr McLaren: This was born out of when we started as a Victorian group. We were very individual and we interpreted the law in our own ways. We complied with it as best we could, but we did not have a centralised discussion board or peer group set up at the time. We have propagated advice through the other states to ensure that there are what we call community practices, where clinicians can discuss their cases and learn from each other.
Several months after, from I think June to November, we had no interconnection with other VAD-practising doctors. In November, we had a forum set up where we are able to connect and talk about difficult cases and how we would each interpret them. As the subsequent states came online, we were approached by some of the practitioners from other states saying, “We don’t really want to reinvent that wheel, so can we join your community of practice?” Because it was set up by our state government, they were unable to join, so I saw a gap in terms of creating an organisation where we could propagate that knowledge and not all start from scratch.
It initially started as a group of voluntary assisted dying medical practitioners, and we would discuss cases across the board and ask things like, “What would you do under your legislation?” and we all learned from that. Then we were approached by pharmacists, nurses and others involved in voluntary assisted dying provision, including legislators who wanted to contribute to the custodians of the voluntary assisted dying law, who are the people who actually run the projects. That then led to the creation of Voluntary Assisted Dying Australia and New Zealand, which is a multidisciplinary group of predominantly doctors, but we do have nurses, pharmacists and legislators involved. We have had two annual conferences where we discuss issues faced by many of our practitioners. That has been a great resource for people.
We are developing standards. We feel that in our legislation there was perhaps too much about instilling what the standards are. We feel as though the appropriate-ness of such things as telehealth should be regulated via standards rather than via legislation, which it currently is in Australia. These are the types of topics we have weighed in on and created position statements for in order to protect the laws that we believe in, uphold and like to think of ourselves as responsible practitioners of.
Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)
Q
Dr Fellingham: It is important to reflect that only people who are at quite a significant point through their own specialty careers are eligible to become assisted dying practitioners in this country. For instance, I was a consultant anaesthetist and I had already been practising for more than a year. I had lived experience of caring for patients both living and dying, both anticipated and unexpectedly, over a career spanning more than 10 years, before I came to the point of assisted dying.
To become eligible to offer assisted dying, I then had to undertake training developed in a special package by the Queensland University of Technology. That training package takes about two days to complete and there is an exam at the end before someone can become eligible. The exam has a 95% pass rate.
Once someone has qualified with that training, they are offered the opportunity to give their details to the state-wide care navigator service. The vast majority of people opt to do that. Once they do that, they basically become engaged in this incredibly supportive, collaborative and nurturing multidisciplinary team within a professional organisation that, in our state, covers all the assisted dying practitioners—the doctors—but also the care navigators, the pharmacy service, the individual voluntary assisted dying programme managers and the end of life choices co-ordinators, who exist in all our hospital systems.
Because we are all consultants in our own specialties, there is not the same level of supervisory oversight as we would give to junior doctors—there are not forms that we fill in; we do not accredit one another—but we do acknowledge that we are all learning and growing in this space. These are new laws: even the oldest in Australia has only been going for five years. Every single one of us is motivated from a place of wanting to support, collaborate, grow and learn from one another, and ensure that the care we are offering to people in this challenging space is of the absolute highest quality.
We have a really robust community of practice. We meet monthly. Half those meetings are online to allow our regional practitioners to join, and half of them are face to face. They are extremely well-attended closed sessions where, especially over the time that we have developed relationships with one another, we find an incredibly supportive space to share our experiences and to learn, grow and develop from one another.
In terms of CPD, we all have to maintain our professional registration. I have both general and specialist registration with our supervisory body, which is like the General Medical Council. I complete my mandatory CPD requirements each year, as per my specialist college. On top of that, I have just redone the refresher training, which is once every three years. That is just what was mandated in our state. If someone has not done VAD practice, they have to do the whole thing again. That is only for people who have been active in this space. That training is shorter—it is about half a day—but it is really a reflection of what we are doing on a weekly basis. We are living and breathing this work, and really strongly collaborating with everybody else who does it.
Kit Malthouse (North West Hampshire) (Con)
Q
The Chair
Who is best qualified to answer, please?
Dr McLaren: Greg, I might dob you in for the neuro-degenerative perspective, if that is all right? I have been involved in several of those cases but, as a medical oncologist, it is a little outside my field.
Dr Mewett: In most Australian states, the law was made so that a patient was eligible if they had a terminal prognosis of six months or less, except in the case of a neurodegenerative disorder—the most archetypal would be motor neurone disease, but there are a number of other neurodegenerative disorders for which prognosis can be made, including Parkinson’s—in which case it was 12 months or less. We have been trying to tease that out as part of our Victorian VAD review board work, and we could not find the logical or consistent reason why there would be two different prognoses for different disorders. We think it was because the advisory to the legislators thought that patients with neurodegenerative disorders might lose capacity to continue with the process earlier.
We and all our learned colleagues know, however, that patients with all sorts of diseases can lose their cognitive abilities during their disease, particularly with cancer and motor neurone disease. We do not see that as logical or reasonable. In fact, as Dr McLaren said, we are considering recommending that prognosis is set at 12 months, which is what Queensland legislated for and practices. A 12-month prognosis is reasonable for a whole range of reasons.
The Chair
Thank you very much. I have three questions remaining and five minutes, so we need brevity, please.
Lewis Atkinson (Sunderland Central) (Lab)
Q
Dr Mewett: I will say one thing briefly. Palliative Care Australia, which is our peak body, commissioned a report a few years back that studied the introduction of voluntary assisted dying legislation throughout the jurisdictions of the world. It concluded—this is a body that was not pro-VAD—that there was no adverse impact on palliative care services; indeed, it was often the contrary. Palliative care services were actually strengthened and enhanced because of the emphasis now being placed on more choices at the end of life. So I think that is an absolute furphy, as we say in Australia—you might say a red herring.
Palliative care services are not in any detriment. In fact, I would go on to say that this idea that palliative care doctors will leave in their droves if such legislation is introduced is just false. We respect conscientious objection in this space, and we have learned to live with each other and respect that people are entitled to set their own ethical limits.
Sojan Joseph (Ashford) (Lab)
Q
Dr McLaren: We were made aware of one situation in Queensland last year. The eligible patient was given the medication, but they ended up in hospital and died from their disease. Their husband then went home, took the voluntary assisted dying medication and died. That was obviously a tragedy and no one wants that to occur, so I do not want to be flippant in talking about it, and I hope my comments are taken in the way they are intended.
We know that spousal suicides occur when people die, and we have had one case across Australia compared with thousands of successful cases of voluntary assisted dying conduct. No other cases have been evidenced, so the rate of that is incredibly low. The voluntary assisted dying team in Queensland, on the same day that they became aware of that case, put in steps to ensure that it would not happen again, which I believe included the required return of the medication.
We also have to balance the autonomy of having the medication available to patients at 2 in the morning, when they have an exacerbation of their pain and say that enough is enough, instead of waiting for business hours when the doctors are available to come and sit with them. It is a very delicate balance and there will always be that risk. I think the balance is struck well and the safety can be upheld by still providing the patients access to their own medication.
The Chair
I am going to take one final comment from Dr Mewett, as we are practically out of time. I am sorry that there is one Member who has not been called.
Dr Mewett: To be absolutely clear, spousal suicide occurs with leftover palliative care drugs, and we had two cases of that in Victoria prior to voluntary assisted dying. It is hardly surprising that that may occur in a very rare number of cases.
The Chair
I am afraid that has to bring this session to a conclusion. Dr McLaren, Dr Mewett and Dr Fellingham, thank you for giving up your evening for us. The Committee is indebted to you. Thank you very much indeed and have a good night. While we are changing over, I call the Member in charge of the Bill to move a motion.
Kim Leadbeater
I beg to move,
That in the list of witnesses set out in the table in the sittings resolution agreed by the Committee on 21 January 2025 and amended on 28 January 2025, leave out “Professor Jane Monckton-Smith OBE” and insert “Hourglass”.
Unfortunately, we found out in the early hours of this morning that one of our witnesses is unable to join us this afternoon.
Question put and agreed to.
Examination of Witnesses
Professor Tom Shakespeare, Dr Miro Griffiths, Yogi Amin and Chelsea Roff gave evidence.
The Chair
Q
Dr Griffiths: How long do I have for the opening statement?
The Chair
It should be very brief, please, because the Committee will put questions to you and you will, I hope, have adequate opportunity to make the points you wish to make.
Dr Griffiths: My name is Dr Miro Griffiths. I am based at the University of Leeds. I hold several advisory positions on disability policy in the UK and across Europe. I am also connected to organisations such as Not Dead Yet UK.
My position is that I am overwhelmingly against the principle of and the clauses set out in the Bill, primarily because of my concerns about how it coalesces with the systemic injustices faced by the disabled people’s communities in the UK. I also have reservations about how it will affect the relationship between medical practitioners and disabled people’s communities. There are some deep concerns around issues of coercion that are not satisfied within the Bill. I also have reservations about the way in which we are navigating towards emphasising the trajectory of a health service that facilitates, and arguably accelerates, death over other forms of assistance within the community and within our health service.
Chelsea Roff: Thank you, Chair, and to the Committee for having me. I have been the director of a charity based in the United States, but now working in over 50 countries around the world, for the past 11 years. I am here in a personal capacity, and really I am here as a researcher.
My area of research has historically been the treatments and prevention of eating disorders, but last year it took a turn and I, along with my co-author, Dr Catherine Cook-Cottone, completed a systematic review of assisted death in eating disorders. Our findings really shocked me. We found that at least 60 people around the world have been euthanised or assisted in suicide—I am using jurisdiction-specific terminology there; I will use “assisted death” and “assisted dying” today—including in three jurisdictions in the United States, where I am from: Colorado, California and Oregon.
That is important for the Committee because those are jurisdictions where assisted death is legally restricted to terminal conditions. We saw anorexia nervosa listed by name as a terminal condition. Most alarmingly to me, in two of the states we could find no mention of documented cases in the annual state reports. Had a physician and her colleagues not written a paper and told the world about it, we would not know that those young women had died. In 100% of the cases we reviewed, the people were women, a third were between the ages of 18 and 30, and two thirds were under the age of 40. I have to emphasise that these were young women who did not have failing organs and did not have comorbid terminal conditions; in none—zero—of the cases we reviewed was there organ failure or comorbid conditions, and they had decades of life ahead of them.
I hope that I can be helpful to the Committee in sharing the evidence that we have uncovered internationally. The evidence is most relevant to clause 2, on the definition of terminal illness, and clause 3 on mental capacity, but it is also relevant to latter parts of the Bill, on reporting and on the approved substances used for this process.
The Chair
Order. I am going to have to urge brevity on everybody this morning, because of the time that we have not got.
Chelsea Roff: I am done.
Yogi Amin: Morning—thank you for having me. I am Yogi Amin, and I am a partner at Irwin Mitchell solicitors, where I head up the public law and human rights department. I have worked in the area of mental capacity law and public law for over 20 years. That includes on cases where there are disputes over medical treatment and safeguarding aspects. I have put a written note into the Committee this morning; I am sorry it is late, but it arrived just before I did. I can touch on some of the points in that note.
The evidence I give, and the information I have given, is in a personal capacity and should not be attributed to my employment or any organisation I am in; I am a trustee of the Royal Mencap Society. I am also a Law Society accredited legal representative, which means that as part of my practice I represent people who are vulnerable and come before the Court of Protection for decisions about disputes on mental capacity and best interests.
Professor Shakespeare: Thank you for inviting me. My name is Tom Shakespeare, and I am professor of disability research at London School of Hygiene and Tropical Medicine. I am a sociologist, and have done considerable qualitative research with disabled people.
I am here to say that most disabled people support the Bill. There are some very vocal people who oppose it—and they have every right to do so—but the Bill is supported by disabled people, probably because it is restricted to terminal illness, which I think is a good thing. I would oppose the Bill if it was relevant to all disabled people; this Bill is only relevant to people who are dying already. It defines terminal illness very clearly. For example, mental illness cannot be the sole criterion —so that would rule out people who have eating disorders, I think.
Obviously, we live in a difficult world and there is a lack of social support. I would like to see better palliative care, more hospices, and more options for disabled people and people who have terminal illnesses, but this legislation should be a tool in the toolbox for people who have terminal illness. They may not select it, but knowing it is there will give them the assurance that they will face death knowing that they have a way out and a quicker, better death if they choose that. Most will not, but some will and they should have that right.
Jake Richards (Rother Valley) (Lab)
Q
Yogi Amin: Reservations—no. In fact, I wholly recommend and support the idea as drafted 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. Certainly when I give training to advocates, doctors and so on, it is well understood how to apply the test. That could be adapted for this particular decision, which is done here. In the past couple of years, we had a decision in the Supreme Court which settled how to approach the question of capacity, and to disturb that would concern me.
Jake Richards
Q
Yogi Amin: 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.
The Chair
That was a specific question to Mr Amin, but it is an important issue. Does anyone else wish to come in, briefly please?
Chelsea Roff: One thing I would like to highlight in our study is that all 60 people who died—young women, mostly—were found to have mental capacity to make the decision to end their life, so I worry that mental capacity will not be an effective safeguard to prevent people with eating disorders from qualifying under the Bill.
I also note that Oregon and California, where I am from and where we have found cases, have an additional safeguard to mental capacity. That is, if there are any indications that the person might have a mental disorder, that person must be referred for a mental health assessment. It is important not to make a false equivalence between mental capacity and mental health.
We could, for instance, have a person who has a prognosis of six months or less, but their wish to die is emerging from severe depression, from suicidality. We saw very high rates of suicidality and depression: 89% were depressed and nearly half chronically suicidal when they died. Physicians emphasised, still, that the wish to die was not emerging from a mental illness, despite them having diagnosed mental illness.
Rebecca Paul (Reigate) (Con)
Q
Chelsea Roff: Thank you for that question. No, I do not think it is accurate, but I have to emphasise that laws in other countries have expanded through clinical interpretation, not just legislative amendment. There are clinicians—a very small minority—who disagree and who have characterised anorexia by name as a terminal illness, but they have also said that eating disorders qualify because of the physical manifestation of the disorder. You cannot disentangle a mental disorder from its physical effects. They cite terminal malnutrition; we have identified 25 cases between California and Colorado where malnutrition was listed as the terminal condition. I cannot rule out whether that was anorexia or something like voluntary stopping of eating and drinking, but I worry that it is the physical manifestations that will be cited and, without a mental health safeguard in the Bill, that puts a whole lot of people at risk.
The Chair
Dr Griffiths or Professor Shakespeare, do either of you wish to comment, because you have not spoken yet?
Professor Shakespeare: If you look at clause 2, the definition of terminal illness is very clear:
“a person is not to be considered to be terminally ill by reason…of…having one or both of…a mental disorder”
or “a disability”. I think that would cover that case.
Chelsea Roff: May I add one sentence? I think you have left out an operative word in that sentence, which is “only”. It reads,
“a person is not considered terminally ill by reason only of”—
Dr Tidball
Q
Professor Shakespeare: I would say that it is very important that the Bill is for terminal illness only. It should give a sense of safety to disabled people. In jurisdictions like Oregon, California and Montana, which Chelsea has mentioned, we have not had an expansion from terminal illness to, as it were, suffering. If you do not carry suffering in the Bill, you will not get into the situation that Canada got into.
I gave evidence because Canada was seeking—some people were seeking—to expand the coverage of their Act to all disabled people. They did so by referring to the Canadian charter of rights and freedoms and to the word “suffering”. They said, “Look, lots of people are suffering, not just terminally ill people”. Therefore, it is very important that it is only terminally ill people who are covered by this Bill. That, as I say, should give disabled people some support.
As you know, Marie, we talk about choice and control as being the principles of independent living. Disabled people should have rights over their lives. This applies to people who are disabled, yes, but terminally ill primarily. That is why they should have this law, which gives them choice and control over their lives. They are going to die anyway, but it removes the fear and reality of a difficult, unpleasant and undignified death.
The Chair
Dr Griffiths, do you want to add to that?
Dr Griffiths: This issue highlights a fundamental flaw with the Bill, which is the nonsensical division between a terminal illness and what constitutes being a disabled person. Section 6 of the Equality Act 2010 states that a disabled person is somebody who has a “physical or mental impairment” and the impairment
“has a substantial and long-term adverse effect”
on their
“ability to carry out…day-to-day activities.”
If you have a terminal illness, it is likely that you will be defined within the terms of what is outlined in section 6, so it is a fundamental flaw, because disabled people will be incorporated within this.
The issue also highlights this arbitrary nonsense about a six-month perspective. 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?
These concerns highlight fundamental flaws, but they also play into what a key issue: the campaigning that will continue after the Bill, if it is to succeed. You will get people who will say, “Why not five months, or seven? Why not other conditions that are not being highlighted in our current discourses?”
Sarah Olney (Richmond Park) (LD)
Q
Dr Griffiths: I think so—I think the coercion principles outlined in the Bill are incredibly weak in terms of the scrutinising and the process of how you judge whether coercion has taken place. We know that coercion is a complex issue, but put that against the context of disabled people’s lives; we are talking about disabled people who are struggling day to day to access sufficient support and to live in participatory, accessible societies. The feeling, then, of societal coercion—the feeling that this is a tolerable idea—highlights my concerns about coercion.
It also plays into the issue of support and assistance to understand what your rights are, not just in terms of what we are talking about here but broader disabled people’s rights. There is a lack of advocacy services available to disabled people, and there is a lack of support for disabled people to have accessible information about their rights. If you feel that assisted dying is your only choice—as opposed to accessing support or calling out discriminatory practices in, say, access to social care and healthcare—that highlights, again, situations where coercion will manifest. The infrastructure to support people either to respond to coercion, or to understand that they do not have to be in that position in the first place, is non-existent.
Tom Gordon (Harrogate and Knaresborough) (LD)
Q
Professor Shakespeare: When I read the Bill, I thought that it did have many safeguards. It has, for example, five opportunities for a conversation with doctors or other supporters. That is a good safeguard. I think it makes a criminal offence of dishonesty, coercion or pressure, so that would scare off people. Miro is quite right—there are people who might put influence on somebody, but I hope that they would be covered under clause 26 as having committed an offence. That would scare people who may have a particular view against assisted dying.
How can we make it stronger? We could have more of an advocate for the person who is requesting assisted dying—somebody who will support them, within the law, to make that decision or to think about their decision. We are trying to make sure that everybody who is thinking that this is for them has the opportunity to talk about it and to think about it. The time and the conversations are all about that, but maybe an advocate also would be the person who is requesting this step, who is not a beneficiary in any way of that death, and they could be a neutral party to give advice. I am not sure. However, there is a lot here. There are five conversations. I am not surprised that people thought it was strong. I think it is a strong Bill.
There is scope for doctors and other medical practitioners to act on their conscience and to withdraw from this. Miro made a useful point, which is that we do not want any disabled person frightened of their doctor or worried that their doctor, who has been supporting somebody else to die, might do that with them. In conversation, Marie, we have talked about an assisted dying service as being a part of the NHS, but I wonder whether it might be specifically around this. I think that it is worth considering whether the average doctor is the person to whom a person should take a concern or a wish to die.
So this is about advocacy and maybe having a specific service for people who want to go down that route. However, I think it is a strong Bill as it stands.
Tom Gordon
Q
Professor Shakespeare: I think the law is only one of the influences that might be involved. There is also physical health, mental health and social wellbeing. I think a multidisciplinary panel might be a better way of finding out. But I bow to my friend Mr Amin, who has a lot more experience of legal panels than I have.
The Chair
Mr Amin, do you want to comment?
Yogi Amin: The way the Bill is drafted, the judges reviewing the case are not making an order; they are declaring a plan that someone else has produced and has put in front of them. It is a strong, independent, legal and judicial safeguard, as part of the Bill. My written submission, you will note, says that the courts are well used to doing that. The courts have been doing it for many years. They have been dealing with disputes over facts, disputes over capacity and disputes over medical treatment. They are able to identify safeguarding issues. The courts and the judges are certainly able to do it. I am not speaking to the question of capacity. If the question is about whether to introduce something different from a High Court judge, I will wait to see it and scrutinise it, but as it is drafted at the moment, I would say that a High Court judge is a strong legal safeguard as part of the mix of safeguards in the Bill.
The Chair
I will come back to Marie Tidball, but I want to make it plain to the panel that, while questions are being directed to specific panellists, if anybody wishes to come in on something, do please indicate.
Chelsea Roff: To your question, Mr Gordon, about whether this is the safest Bill in the world, I know that due care has been taken to make that happen. One of my biggest concerns about clause 2 of the Bill is that it makes no distinction between a person whose illness can become terminal if they refuse or cannot access treatment—for instance, someone with diabetes. Type 1 diabetes affects 300,000 people in this country, and it often co-occurs with eating disorders. The way this is written would not prevent someone who chooses to stop taking insulin from qualifying as terminal.
In the US, we are seeing voluntary stopping of eating and drinking used to circumvent the terminal illness safeguard. I will quote the American Academy of Aid-in-Dying Medicine, which is the professional body:
“Legally, there is nothing in the letter of the law…that explicitly prohibits accepting voluntary stopping of eating and drinking as a terminal diagnosis to qualify for aid in dying.”
It describes this as a “legal gray zone” that would “essentially eliminate” the terminal illness criteria. There is nothing in this Bill as written that would prevent that, and we have to look at the letter of the law, because it expands through interpretation, not just amendments.
Dr Tidball
Q
Dr Griffiths: This plays into a broader issue around the reporting mechanisms associated with the Bill. I think there needs to be further robust action around how to collect data and allow it to be analysed, to see the trends that are occurring in why people are pursuing this option and how that may play into broader political and socioeconomic issues, such as a lack of services elsewhere or frustrations for disabled people and their families in trying to access particular services.
This goes back to a point that Tom made. While we may see popular opinion within disabled people’s communities, it is worthy of note that no deaf and disabled people’s organisation—these are organisations that are representative of disabled people who engage critically with the issues facing disabled people’s communities—has been in support of this. I would therefore encourage their representation on any form of advisory council. I would also request that disability studies scholars, who are often left out of the discourse around disability policy, are part of any form of mechanism to advise or scrutinise.
Professor Shakespeare: I think the council is a very good idea. It should reflect the range of views, as Miro says. In Oregon, disabled rights advocates have not, as I understand it, opposed the Act that they now have. Of course, it is mixed, but some disability groups are definitely in favour. There is a difference between organisations of disabled people and disabled people on this. Politically, the disability rights community are against assisted dying—they always have been. That does not mean that they reflect what ordinary disabled people want, and that is what is important. I think you should be interested in what people want, and they want this.
Sean Woodcock (Banbury) (Lab)
Q
Dr Griffiths: That goes back to my previous point around how coercion can manifest in various different ways. One can be exposed to the societal pressure to feel that your life is no longer tolerable because of the struggles that you have in terms of accessing services, provision and support. We know from data that we have people in the community who are struggling to see their GPs or consultants associated with their conditions and changes in their conditions. The coercion, I feel, will come from how society is organised, and does not respond to the injustices faced by disabled people.
Also, there is a broader, slightly different issue, which is that there is nothing in the Bill, in my view, that satisfies the concern that—if it were to pass—you would create a network of practitioners who are sympathetic to the principles of assisted dying, and therefore, when somebody comes forward to say, “I want to die”, they will be more receptive to those ideas that the individual has. They will therefore facilitate their process through that, which I think undermines any attempts to have objective scrutiny of coercion that may occur. There is nothing that stops you from saying, “I know that there are these certain people I can go to who have either been public or have supported others to have access to this service. Therefore, that is my best chance of gaining access.” That then collapses all attempts to address issues of coercion.
Chelsea Roff: To add to what Miro is saying, we have seen in our study a more subtle form of influence, and sometimes it actually comes, tragically, from the clinicians themselves. We saw 95% of clinicians tell the patient and their family that they had an incurable, irremediable illness with a prognosis of six months or less in some cases. That has an influence on a person and does not cohere with the evidence on eating disorder recovery— in fact, we have no good ways of making prognosis in eating disorders. The only good prognostic indicator we have is weight restoration.
I would also highlight—relevant to here, where we live —that the all-party parliamentary group on eating disorders just put out a brilliant report on huge gaps in the care system. I am working with a person and a family right now, who has been to the Court of Protection, whose eating disorder team presented her and used the term “not treatable” to the judge, as well as the term “in the end stage of her illness”, and predicted that she would die within six months. Eighteen months later, she and her family are still fighting for treatment and are being denied services. That is the kind of coercion I am worried about, which happens within a healthcare system that I know many of you were elected to fix. That is what so many people have called for—to fix a broken NHS. That is not my choice in terminology—I love the NHS, but I think that is what we need to be worried about.
Clause 4(4) especially to me reads like a formula for coercion. A physician could say to a young woman with an eating disorder, “You have a severe and enduring eating disorder”, which you will not find in any diagnostic text, but is used frequently in these cases and in the Court of Protection. They could say, “We have done all we can. The treatment options are exhausted”—again, you will find that in the Court of Protection—and, “Your prognosis is poor”. It leaves you with a feeling that you have nothing left to choose from, especially if you are struggling to access services.
The Chair
I mean no discourtesy to the Committee, but we have 20 minutes, and 10 Members wishing to ask questions, so we have to move this on I am afraid.
Rachel Hopkins (Luton South and South Bedfordshire) (Lab)
Q
Yogi Amin: As I said, I have worked in this area for over 20 years. I represent individuals week to week in this area and safeguarding is all across what is needed for these individuals. The professionals who are involved in their lives are regulated. We are talking about doctors who are meeting individuals, and they understand what it means to identify safeguarding triggers and where referrals are required. That makes it quite strong in this particular Bill.
I am comfortable with the wording as you have it in the Bill, and I say that as someone who has worked in the area for many years. Lawyers will go to court and pick over words, but the way it is drafted, it is understood that there is voluntariness, as described in the Bill, and coercion. I do not think that additional words are necessary to describe what is required here—it is a voluntary, free-will decision, and coercion is defined. When we are talking about a doctor trying to understand that and a court then interpreting it, I think it is pretty clear what that is, so I am comfortable with the way it is drafted.
Generally, from a safeguarding perspective, there are, as Tom said, a number of points at which professionals ask individuals for a decision on this over a number of weeks, and it goes into months. There is quite a robust process. I point also to footnote 3 for paragraph 4 of my written evidence, where I have referred to the current existing law outside the Court of Protection, where it might be thought that the person has capacity but there are concerns about coercion and so on. There is, under section 42 of the Care Act 2014, the provision for safeguarding referrals. There is, under section 222 of the Local Government Act 1972, provision for a local authority where referrals are made to bring the matter before the court under the inherent jurisdiction.
The inherent jurisdiction does not go away; it is here and available where there are concerns over the safeguarding of an individual to allow them to make their own individual, free-will decision. It is not there to do anything other than protect that individual and have a safety net around them to ensure they can make individual, autonomous decisions. Nothing needs to be tinkered with in the current Bill, because that is there—Parliament has already provided for that. Have I answered your question?
Juliet Campbell (Broxtowe) (Lab)
Q
Professor Shakespeare: It is natural and right that somebody should discuss their wishes with a doctor who supports and treats them. I do not think there is a problem there. Marie’s suggestion that there should be a wider body to look at this is very relevant. At the moment, doctors refer women for abortions, and that does not stop them also supporting pregnant women. I do not think that women would distrust their doctor because they are sometimes involved, at some point, with an abortion decision. That is quite obvious. As my colleague Yogi Amin said, the Bill covers what the terminal illness is, and why we should support people to voluntarily exercise their choices. Lots of doctors will not be in favour of this, but they will be clinically professional and they will discuss with the person. I do not have a concern about that. You are more likely to be kept alive against your will than you are to end your life under this Act.
Dr Griffiths: My first point is that, for me, the Bill raises concerns because it relies on doctors’ interpretations of prognosis. If a doctor assumes that you have six months left to live, and is therefore going to start having a conversation with you about the possibility of assisted suicide, that draws into question how we allow assumptions to be made about whether an individual has six months left to live. That is particularly the case given that we have evidence that shows that, with certain interventions or mishaps surrounding prognosis, individuals can live for months, years and decades longer. The idea of bringing in the conversation from the point of view of the medical practitioner could, arguably, accelerate one’s death—if you take into account that their idea of prognosis might be flawed.
It also, I think, raises problems, because we know that many individuals with health conditions and impairments—irrespective of whether we want to create this false line between disabled people and people with terminal illness—do not have access to advocacy or representation in these kinds of processes. Having a conversation where there is extreme credibility and validity that rests on the medical practitioner could exacerbate issues around coercion.
We could take a moment of reflection. When we were going through the pandemic, the Parliamentary and Health Service Ombudsman highlighted how medical practitioners could think about “do not attempt resuscitation” orders and how they were utilised in the disabled people’s community. That has parallels with the issue we have here, where medical practitioners will be making assumptions about whether conversations or applications should be made.
Yogi Amin: Can I just raise one point on representation? I point Members to paragraph 10 in my written submission, which tries to make the important point that if we are involving courts, individuals need access to justice. They need access to advice, and that means legal aid. I point in that paragraph to the provision of non-means-tested legal aid, just like in the case of parents of children and the withdrawal of life-sustaining treatment. Those current rules are in place for parents, and a similar arrangement could be put in place for individuals who are brought before the court in this matter.
Liz Saville Roberts (Dwyfor Meirionnydd) (PC)
Q
Yogi Amin: If the legal panel is not a High Court judge, but it is a multidisciplinary panel, then it just draws upon the people in the local areas. The Court of Protection operates in England and Wales and the judges apply the law the same way. That is what the panel would do in this case. Are you more concerned about the make-up of the panel or how they apply it?
Liz Saville Roberts
Q
Yogi Amin: Are you talking about responsibility for resourcing it?
Liz Saville Roberts
Q
Yogi Amin: Oh, I see. I suppose if there is a multi-disciplinary panel, the judiciary would appoint the individuals. It would be a judicial body, essentially. I do not know if you are talking about a tribunal that is multidisciplinary, although I know people shy away from tribunals.
Liz Saville Roberts
I think there is a question, because we are a Committee on a private Member’s Bill, as to how we ascertain these details.
Naz Shah
Q
Dr Griffiths: There is no indication of how you would place the infrastructure for support for people whose discrimination or injustice is exacerbated through an intersectional lens—for example, the cross-cutting of different experiences—and how that can be attested for within the Bill. For example, if an individual comes forward to discuss with their doctor their concerns, there is no infrastructure for how that would be acknowledged with an intersectional critique.
There is also a concern that many within disabled people’s communities from particular backgrounds, such as women, are pre-exposed to further levels of injustice that are not accounted for, and their experiences of trying to access support for certain aspects of their life are compounded by inequalities. These issues are not addressed by the Bill. In my view, if this mechanism becomes available, the issues that some individuals face in terms of injustice will play into the consciousness of their decision to go forward with this. I cannot think of any clause or amendment that would address that issue in its totality.
Naz Shah
Q
Chelsea, thank you for your evidence. Eating disorders are classified as mental disorders under the Mental Health Act. The Bill explicitly states that a person cannot be considered terminally ill only because of a mental disorder. You have also talked about the withdrawal of insulin. Could you respond to both of these? Why do you believe that eating disorders would still meet the criteria under the Bill, and likewise for the issue of stopping insulin?
Chelsea Roff: There is a false distinction being made in the Bill between a mental disorder and its somatic or physical manifestations. Mental disorders, especially eating disorders—not just anorexia—impact the body, and have life-threatening consequences. We had 20,000 acute hospitalisations for eating disorders in this country last year, and we have massive gaps in care. Those are individuals who, if they were to choose to forgo treatment or could not access treatment because they were on a wait list for a long period of time, would qualify under this Bill.
I draw your attention to the evidence I submitted with Dr Agnes Ayton from the Royal College of Psychiatrists, and Dr Angela Guarda, a leading physician from John Hopkins University. I also draw you to our own case law in the Court of Protection where we have had physicians represent eating disorders as terminal conditions, as in the end stage of their illness.
I am grateful that you have drawn the connection to diabetes, because it is not just about eating disorders. Substance use disorders would have the same effect. Outside of mental disorders, HIV/AIDS is a progressive condition that cannot be reversed by treatment. Are you okay with a 19-year-old young man who decides to discontinue treatment qualifying under this Bill? Those are the questions you have to ask. I am not, in principle, against the Bill, but you have to look at the letters on the page, because they will be interpreted after the Bill is passed. Your constituents are depending on you.
The Chair
I am sorry, but we still have more Members and questions than we have time, so I am going to come down to one question per Member.
Kim Leadbeater
Q
“an inevitably progressive illness, disease or medical condition which cannot be reversed by treatment”.
It also says, for the avoidance of doubt, that this cannot be “a mental disorder” or “a disability”. I hear your concerns, and I want to support you and work with you on this. I am keen to know: what else do you want to see in the Bill that would reassure you that this is not about disabled people or people with mental disorders?
Dr Griffiths: I am conscious of time, so I will be very quick. My first point would be, why would you stick it at six months then? Why not have it at seven days, for example, as a way to take out our concerns? If you are talking about prognosis, let us go back to Chelsea’s point and the point that I made before. My condition is a neuromuscular condition. I have had meetings with clinicians where some have referred to it as a terminal illness, some have referred to it as a life-limiting condition, and others have referred to it as a progressive condition. The articulation of the ideas and the ways in which we think about conditions show the complexity of the issue. We are talking about terminal illness, and people who are terminally ill do constitute disabled people under the Equality Act, so you cannot make the distinction.
If you want to be quite proactive about it, then why not reduce the prognosis timeframe and make it as short as possible to take out the concerns about prognosis, and the concerns around whether individuals are going to live longer or could be facilitated access to alternative treatments to prolong life? I do not understand why we are fixated on a six-month prognosis because, as we have seen in other countries, as soon as you pass the legislation on six months, you will have individuals who say, “Why not seven months? Why not five months?” You will have campaigners who will say, “This does not include me and I have been campaigning for this.” There will be pressure to change and Governments will change. There is no guarantee that you can make that the eligibility criteria will be fixed.
Danny Kruger
Q
Professor Shakespeare: First of all, a terminal illness is defined as a “condition which cannot be reversed by treatment” I know that that does not mean a cure; you are not aiming at a cure—but it says, “cannot be reversed”. Surely that would not include things like HIV and diabetes because they can be reversed. They cannot be cured; they are still there, but they can be reversed with insulin, antiretrovirals or whatever.
I think, yes, terminally ill people are disabled people almost always, but that does not mean that all disabled people are terminally ill. Even if you have a disease or a condition—like Miro does or like other people do—that will probably result in your death eventually, you are not going to die tomorrow or in six months. You may die in 16 years or whatever. It is very difficult to define terminal illness, and that is why six months, I think, is used in this Bill.
Very recently, my aunt died. She was unconscious for the last month or so of having cancer and then she finally died. She would not have been able to express her will and her preference to have assisted dying, even if she wanted it. Therefore, I think six months when you can have capacity, you can anticipate, you know you are going to die but you want to have control in the manner of your death, is more useful than seven days or less, when you might be unconscious and you might not be able to express a will or preference.
Dr Opher
Actually, my question has already been asked.
Chelsea Roff: May I respond briefly? I want to address the question. I know it is not your intention for eating disorders to be included in this Bill, and I am grateful for that. When I started our research, I thought, “We just need stronger safeguards.” That was where I began, and after looking at 33 jurisdictions around the world, I have real doubt about whether safeguards are enough; I know how difficult it is to put it on the page, and I am seeing it expand and be applied through interpretation. I disagree with Professor Shakespeare, respectfully, that diabetes is a reversible condition. You cannot go back in time and reverse that condition.
I agree that you are doing this for a noble purpose, and there are members of my family that want this Bill to go through, and yet I emphasise to all of you on the Committee that the question before you is: could this Bill have knock-on effects for some of your most vulnerable constituents? How many deaths are you okay with? If the safeguards fail once, that is a human being who maybe, in a despairing moment, was handed a lethal medication instead of the care, the treatment and the help they needed. That is what we are talking about. You really have to get this right, because those people are depending on you.
Lewis Atkinson
Q
Yogi Amin: I have worked in a range of medical treatment cases over many years, covering different illnesses and conditions, and clause 2 reads fine to me. It works. It is clear. I do not consider that it needs any additional words. I can understand, when we go to court, that cases will come through and they will fall within those definitions, and it will be clear. I do not consider anorexia to come under a terminal illness unless it is right at the end of life, and that does not really fit within the parameters of the Bill, because we are not talking about right at the end of life. We have section 63 of the Mental Health Act, which deals with anorexia, and there is force-feeding that clinicians consider. That is my view on the anorexia side of things.
Doctors will provide the evidence on terminal illness. You heard from the chief medical officer yesterday, and they will provide guidance around all of that. Subsequent to the Bill, there will be secondary legislation and then the guidance. They will provide clear guidance that will then feed into this and the evidence that will be before a judge that says, “Yes, it is a terminal illness, and this is the prognosis” and so on. It is nothing different from what we produce in medical treatment cases before the court at the moment, where the doctors produce expert reports and give evidence. They explain the condition, the prognosis and their decision on capacity, and they explain what is in the best interests of an individual if they lack capacity. As I understand it, the Bill is crafted to produce the evidence as you go along the path here, and then eventually to the judge.
Chelsea Roff: May I add one sentence, because it is related to eating disorders? I would refer to a 2012 Court of Protection case, where a 29-year-old with anorexia was described as being in the terminal stage of her illness and multiple physicians described her death as inevitable. I would also refer to a 2023 case seen at the Court of Protection, which said, “I recognise with deep regret that it will probably mean that she will die.” She was also described as being at the “pre-death stage”. Again, that young woman is still alive and still fighting for services. Although I respect what Mr Amin is saying, and I agree with his interpretation, 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.
Yogi Amin: I do not think they were found to be terminal. They were described by a doctor in a case as being terminal, and that doctor may not have described it properly.
Chelsea Roff: Indeed, but a judge will be relying on doctors.
Jack Abbott
Q
Yogi Amin: Mr Conway was an extremely intelligent and brave individual who campaigned in this area. His strong view about autonomy led him to bring that case, and what he was arguing for in that case forms part of what you have here in the Bill. He was certainly asking for a process in which a decision could be made and some robust safeguards could be provided, which would end up with a court process, and that is what you have within the Bill. I also learned through that case, and others over the years, what the Human Rights Act, the European convention and parliamentary sovereignty mean here. On all three counts, the cases have always said that it is Parliament that makes the decision—so it is you who are deciding. I do not see a court overturning that.
The courts in the Conway case—the High Court, the Court of Appeal and the Supreme Court—were all very clear that it is a matter for Parliament. I really do not see the European Court of Human Rights overturning it in any way at all, and that is from my long experience. The margin of appreciation is very strong with this Parliament to make the decision. I also think, from a drafting perspective, the Bill very carefully defines the individuals—it has drawn the line. Certainly, the courts cannot do it; they cannot extend that line and they will always defer back to Parliament. If you craft the Bill as it is, I am very confident that it will be left here.
Terminally Ill Adults (End of Life) Bill (Sixth sitting)
Thursday 30th January 2025
(6 days, 6 hours ago)
Public Bill CommitteesRead Full debate Terminally 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 (Seventh sitting)
Thursday 30th January 2025
(6 days, 6 hours ago)
Public Bill CommitteesRead Full debate Terminally 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 will now hear oral evidence from three witnesses: Dr Amanda Ward, who holds a master’s and a PhD and is the legal adviser to the Scottish Parliament on proposed legislation changes; Professor Gareth Owen, who is a professor of psychological medicine, ethics and law and an honorary consultant psychiatrist at South London and Maudsley NHS foundation trust; and Professor Laura Hoyano, emeritus professor of law at Wadham College, University of Oxford. Before I call the first Member to ask a question, I remind all Members that questions should be limited to matters within the scope of the Bill. May I ask the panel to introduce themselves?
Dr Ward: I am Dr Amanda Ward. You have already introduced me, but I have been involved with law reform in this space for 13 years. I am also a member of the Law Society of Scotland’s health and medical law committee. I moved to Queensland 18 months ago and took up a research fellowship at the Queensland University of Technology. I am representing myself in an independent capacity today.
Professor Hoyano: Good morning. I am Laura Hoyano; I am a professor of law at the University of Oxford, where I have taught medical law and ethics for many years, as well as human rights. I was a barrister in Canada for a decade, where I practised medical law and human rights law among other things; I am currently a practising barrister at the Bar of England and Wales.
Professor Owen: Hello. I am Gareth Owen; I am professor of psychological medicine, ethics and law at King’s College London and am part of the complex life and death decisions group there. I am a consultant psychiatrist at King’s College London, a general medical hospital at which I am a liaison psychiatrist working with adults over the age of 65.
The Chair
We must stick to the timing of the sittings resolution, as decided by the Committee. We have a long list of people who want to ask questions, so it will be one question with one answer; if Members could indicate who they would like to answer, that would be helpful.
Before we proceed, Dr Tidball has a declaration of interest to make.
Dr Marie Tidball (Penistone and Stocksbridge) (Lab)
I just want to make sure that it is on the record that I have been taught by Professor Hoyano; indeed, well before I was elected, she was a colleague at work.
Jack Abbott (Ipswich) (Lab/Co-op)
Q
Professor Owen: I am somewhat reminded of the old adage that for every complex problem there is a simple solution that is false. We are dealing with complexity here—I think we have to accept that—but complex law or poor law will not provide good safeguards. If you step back and think about what the Bill is really about, at its simplest, it is about the decisional right to end one’s own life in terminal illness.
Associated with that is the concept of mental capacity. I have had over 20 years of research interest in mental capacity. When I look at the issues relating to mental capacity with the Bill, they are complex, but the other important point to understand is that they are very novel. We are in uncharted territory with respect to mental capacity, which is very much at the hub of the Bill.
Daniel Francis (Bexleyheath and Crayford) (Lab)
Q
Professor Owen: It is a bit more fundamental than that, actually. If you look at how mental capacity features in the Bill, the test or the concept that clause 1 rightly invites us to consider—rightly, I think—is the capacity to decide to end one’s own life. The Mental Capacity Act comes in at clause 3.
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. I can talk about the Mental Capacity Act in detail if you like, but that is the main point that I want to make.
Daniel Francis
The Chair may cut you off, but I am happy for you to continue if she allows it.
Danny Kruger (East Wiltshire) (Con)
Q
Professor Hoyano: I always have a problem when tort liability is ruled out by legislation. I think that the accountability of medical professionals, and indeed all medical practitioners in private practice, lies at the heart of how our national health service works, so I have a difficulty with that. I would have to ask Ms Leadbeater whether this is correct, but perhaps the intention was to ensure that members of the family who, for example, were against assisted dying in principle, would not be able to bring an action that could be vexatious against a doctor who had complied with the legislation and should therefore not be troubled with that type of litigation. It might be that that provision could be refined.
Lewis Atkinson (Sunderland Central) (Lab)
Q
Professor Hoyano: It is interesting that a number of Members of Parliament who are practising physicians pointed out in the debate that they have to evaluate freedom of decision making and absence of coercion in many different medical contexts. I point particularly to the withdrawal of medical treatment at the request of the patient, even if that will inevitably lead to death. It is considered to be a fundamental human right that lies at the heart of medical law that a patient has personal autonomy to decide what to do with their body and whether or not to accept medical treatment, provided that they have the capacity to do so and are acting without coercion from external sources. Doctors have to make those assessments all the time.
I suggest that it is perhaps a convenient fallacy to say that pulling the plug on a respirator or stopping artificial nutrition and hydration is a negative act, whereas giving a patient a syringe to end their own life is a positive act. I realise that with the Tony Bland case it was convenient to say that, but there is no doubt that most people on the street would say that pulling the plug on a respirator is a positive act, and yet doctors and nurses are required to do that every day in the NHS, because that is the patient’s autonomy. If there is any question about either coercion or capacity, the Court of Protection steps in and has the jurisdiction to make those decisions.
The Court of Protection should, I believe, be the court that is supervising this, not the High Court. Three levels of judges sit in the Court of Protection; I suggest that a High Court judge be specified, which would mean a statutory amendment to extend the jurisdiction of the Court of Protection. The Court of Protection makes decisions every day on whether a patient has the mental capacity to make decisions about their own medical treatment. It is accustomed to doing that, and one aspect of that analysis is whether the patient is being coerced externally.
Generally speaking, when a patient says, “I don’t want to be on a respirator any longer; I know I’m going to die,” we do not ask questions. As I understand it, it is not part of the protocol to say, “Are you doing this because you are worried about being a burden on the NHS?”, because their personal autonomy is the overriding principle governing medical decision making in relation to the patient. I hope that that answers your question.
Sojan Joseph (Ashford) (Lab)
Q
“are not confident that consent can act as an adequate safeguard”.
On mental capacity, it says:
“These decisions are opinions with a margin of error and are time specific. A person’s capacity can change”.
What is your view?
Professor Owen: That is important evidence, because it comes from a body of practitioners who are very used to doing mental capacity assessments. I think that the vast majority of that sample were consultant psychiatrists, so the pool, as it were, was one of considerable experience. 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.
It is true that psychiatrists—liaison psychiatrists particularly; I have had experience with this myself, clinically and in relation to Court of Protection matters—will be involved with assessing capacity to make decisions to refuse life-sustaining treatment. Those decisions can be quite vexed and can go to the court, and the court can struggle with them.
An important question for the Committee is the distinction—or the similarity and difference, but I think that there are key differences—between the decision to refuse a treatment that is life-sustaining, of which the Court of Protection does have experience, and the decision to decide to end one’s own life. They are conceptually different decisions. I can outline some of the similarities and the differences now, but it might be helpful to take submissions specifically on that question, because it is very important and I think that there is some confusion about it. If you would find it helpful, the complex life and death decisions group could write a statement to elaborate on some of the issues. In summary, I think that that evidence from the Royal College of Psychiatrists is significant, in terms of the confidence.
Sarah Green (Chesham and Amersham) (LD)
Q
Dr Ward: I was the adviser on the previous Bill in Scotland as well, under Margo MacDonald MSP and Patrick Harvie MSP. That was in session 4 of our Parliament; we then did not have a Bill in session 5, which is when we set up things like the cross-party working group on end-of-life choices and I did the PhD. Luckily, we saw a domino effect internationally in session 5; there were various jurisdictions legislating for it. When we came to draft this legislation in 2021, in session 6 of the Parliament, we had decades of data that we had not had when Margo made her first attempt back in 2010.
With the Assisted Dying for Terminally Ill Adults (Scotland) Bill, we have been working with international experts since 2021, and we have had various consultation processes. It is currently with the Health Committee of the Scottish Parliament. We set up a medical advisory group, chaired by Dr Sandesh Gulhane MSP: a group of almost a dozen practitioners in palliative care, mental health experts, geriatricians and other interested stakeholders. It produced a report for us on the medicinal aspects of the Bill.
That has been a four-year process. I understand that concerns have been voiced in this Committee that things have proceeded at pace, but I would argue that you are not pioneers. There is 20 or 30 years’ worth of data, which we have drawn on in Scotland, and there is four years’ worth of work in Scotland that this Committee and this Parliament could look to.
I would also make the point that the data is peer-reviewed and evidence-based. You really have to trust your international colleagues. The data is from Government bodies, from Health Departments, from independent academic peer-reviewed work and from independent review boards. We are now looking at fact rather than at falsehoods or concerns, as we were back in 2010.
Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)
Q
Professor Owen: I think the answer to that is “Probably not,” given the current workforce. Another relevant point is that even if you were to insert into the Bill a very clear requirement for a consultant psychiatrist to be involved if there were concerns about mental health, what would happen in practice would be very different. You can see this in Oregon, whose law has a requirement for, essentially, a psychiatric referral in the case of mental health concern. Those referrals basically occur in less than 5% of cases; I think it is similar in California. Even if you put it in law, there is the question whether it will happen in practice. On the data, it does not. I think that that is a relevant consideration.
Kit Malthouse (North West Hampshire) (Con)
Q
Professor Hoyano: I have to say that I have real concerns, as a practising barrister, about how the provisions as currently drafted could work in terms of judicial oversight. There are a number of unusual functions, if I can express it that way, being attributed to the court. I need first of all to stress that the High Court’s family division, and the Court of Protection, regularly engage with life and death matters, but they are doing so in the context of an adversarial and not an inquisitorial system. However, since the 19th century we have had the invaluable institution of the Official Solicitor, who has investigatory powers or functions and who serves in court as an amicus curiae—a friend of the court—to assist the court in understanding where the issues lie and in calling witnesses. I do not think that it is feasible at all, in our current system, to have the court call witnesses or question them directly until they have been examined and cross-examined, if appropriate; the court can then put in questions and ask for clarification, as would happen normally now.
If we are to have a judicial oversight function as opposed to a panel of experts—to be honest, I think we already have the panel of experts: the doctors who are already involved in the different stages leading up to the final stage—the easiest approach would be for the investigatory function to be assigned to the office of the Official Solicitor, preferably with an individual who has expertise in this field and will be able to get experience by dealing with these cases. I point out that Lord Justice Munby himself—Sir James Munby, as he now is—represented the Official Solicitor in the seminal case on termination of life support, the Tony Bland case. We have a lot of experience in that area, in dealing with end-of-life decision making with the Official Solicitor, but I think that that role needs to be built into the legislation with very specific tasks set out, including an investigatory function.
The other current difficulty is that it is not clear at all what the procedure would be. With great respect to the drafters of the Bill, I have never before seen such a delegation of the most essential procedural structures entirely to rules of court in terms of practice directions or rules of practice; we do not do it in the family division and we do not do it in the Court of Protection. Exactly what has to happen needs to be set out.
It strikes me that the intention may be for the court to, in effect, certify that all the procedures have been correctly followed at the preliminary stages. What is not entirely clear is whether the court itself is required to investigate whether the criteria are satisfied. It reads like that, but I am not sure whether it is supposed to be a review function or a primary decision-making function.
This becomes even more difficult because of the way in which the Court of Appeal’s functions are ascribed. The Court of Appeal does not have power to summon witnesses; the Court of Appeal does not have power to question witnesses. In the criminal division, which is where I am primarily practising now, the court can hear expert evidence de bene esse in order to determine whether it should send a case back for a retrial on the basis of newly discovered evidence that was not originally available, but that evidence will be called by the defence. The defence will be putting the evidence in, the Crown will cross-examine and the court will ask any additional questions it wants to, but to have an original jurisdiction —in effect, what we call a trial de novo: a trial all over again—in the Court of Appeal is wholly inappropriate to an appellate jurisdiction. That needs to be completely rethought.
There is also a difficulty in that the right to appeal is very lopsided: only a patient can appeal a denial, not anyone else. If anyone has concerns about the probity and thoroughness of the preliminary stages, or thinks that the High Court judge sitting in the Court of Protection has made an error of law or has failed to follow the procedures, that needs to be reviewed by the Court of Appeal. We need an even-handed approach.
I can understand the motivation of not wanting busybody people, as happened in one case in Canada in which a wife had a religious objection to assisted dying, and yet there was no doubt that the husband had satisfied all the criteria. She went all the way to the Nova Scotia Court of Appeal because of her religious objections; it turned out that religion was a source of great dissension in the marriage anyway, but her church was egging her on. I know that you do not want that kind of situation, but I believe that this legislation has to be completely even-handed for it to work and for the system to acquire public respect.
Dr Simon Opher (Stroud) (Lab)
Q
Dr Ward: Which clause are we looking at?
Dr Opher
Now you’re asking. Let me check.
Dr Ward: In the interests of time, let me say that I moved to Queensland a year and a half ago, as I mentioned at the beginning, and took up an academic fellowship at the Australian Centre for Health Law Research. That university was tasked by the Government states of Victoria, Western Australia and Queensland with developing the training for assisted dying implementation there. The modules in that training very specifically go through coercion, how you detect coercion, how you discuss it with patients and cultural considerations around it. They cover everything from capacity to the administration of drugs. They are very robust training modules that healthcare practitioners must satisfy at a pass rate of 90%. We rely heavily on the training to make sure that coercion protection is in place.
Dr Opher
It was clause 26, sorry.
Professor Hoyano: Under the Canadian system, the provinces each have a college of physicians and surgeons. However, what has happened is that everyone has worked collaboratively across all 12 jurisdictions, plus the federal Government. We now have the Canadian MAiD—medical assistance in dying—curriculum, which was developed by the Canadian Association of MAiD Assessors and Providers in consultation with experts from across the country. It is providing a comprehensive, bilingual, nationally accredited training programme that is evidence-based and is based on the learning that has happened in Canada since the legislation was first enacted.
There is also a model practice standard for MAiD and a companion document, “Advice to the Profession”, which all the medical colleges have signed up to. It helps practitioners to align their practice with the official guidance and assists health professional regulatory authorities to ensure that the public is protected. Coercion lies at the heart of these documents.
The regulations for the monitoring of medical assistance in dying require—and this is something else that I suggest be changed—that in Canada there has to be an annual report from the federal Government, which is very granular in detail, from right across the country. It happens at least once a year; there was one year in which we had two reports going into all the details. On coercion, we know that in 2023, when they examined the reasons for ineligibility, there were 41 cases across the country in which the physicians determined that the person had not made a voluntary request without external pressure, and it was therefore declined. We need to know is what is happening out there, and I do not think that a report every five years is going to help. We need to enlist all the medical professions involved in signing up to very detailed codes of practice, but we also need the training that Amanda has referred to as essential.
The last point that I would make is that McGill University is launching a national palliative care hub that is available to any practitioner in the country and from which they can receive guidance and support with helping and advising patients who are receiving palliative care. One of the options is, if the patient desires it, how to deal with these requests.
Dr Ward: Now that I have had a look at clause 26, may I answer the Member’s question? I think it is a very well drafted provision, and it is very similar to what we have in Scotland. In particular, I know we are concerned about people being coerced into assisted dying, but internationally it is actually the converse. Some jurisdictions are considering putting provisions in their Bill because family members are trying to put undue pressure on others not to make an assisted dying decision.
On my understanding of the reporting in Kim’s Bill, it is just not a five-year review: the Registrar General, the chief medical officer and the Secretary of State are involved. Again, I commend the Member in charge for the reporting procedures being very robust in the Bill.
Kim Leadbeater (Spen Valley) (Lab)
Q
I notice that you have also spoken a lot about misinformation; how do we tackle that? How do we make sure we are dealing with facts rather than speculation? In particular, how do we provide reassurance to marginalised communities and people with disabilities, who are understandably nervous about this change in the law? When it comes to safeguards and protections, what does best practice look like?
Dr Ward: To take your last point first, we must involve them in the process and have an open dialogue with them. That means not just in the consultation process, when you are considering passing legislation, but when you have your implementation taskforce, on which you must make sure you have representation from across all the stakeholders involved, including people with disabilities and people with terminal illnesses.
I would point to the fact that best practice is about balancing the autonomy, dignity and compassion that the Bill aims to achieve by giving people the option of assisted dying, while also protecting vulnerable people who feel that there are worries and concerns. However, having worked in this area for 13 years and seen people who would really benefit from having this option, and living now in a jurisdiction that has it, I would point out that some of the most vulnerable people I have seen are the terminally ill who want and need this choice. It is about taking a holistic and evidenced-based approach.
You as a Committee will hear from the great and the good across the board, and I am pleased that the Committee is taking account of lived experience, because that is very important to inform the decision-making process. It is about making sure that we are going to the source of evidence and using peer-reviewed data and Government data. Again, as I said earlier, you really need to trust your international colleagues who have gone before you on this. We need to consider what the Bill does versus inaccurate perceptions of or speculations on what it might do. The task here is to consider what is in front of you, not what might happen down the road.
Tom Gordon (Harrogate and Knaresborough) (LD)
Q
Dr Ward: Look: assisted dying is the same as any other healthcare choice. It is always going to be limited. We are not going to reach everyone that we absolutely would want to. There are people who want to have this option and this choice who will not qualify under a terminal illness definition, but we have to draw the line somewhere. We looked at international evidence from Commonwealth countries that are very closely linked to Scotland and the UK. We drew the line with the definition that the person has an advanced progressive illness from which they are unable to recover and that will cause their premature death. For us, that demands the support of Members of Parliament in Scotland and the support of the public.
I really stress the fact that each jurisdiction has to legislate according to its own constitutional, societal, legal and cultural considerations, which is what we have done in Scotland. That is the definition that is working for us now. Previously, there were more liberal attempts that did not gain the support of the House. We believe that we have arrived at a situation that is very similar to the definition of terminal illness here in Westminster, and that is both safe and compassionate but also draws the line so that people who should not be able to access this do not.
Naz Shah (Bradford West) (Lab)
Q
Professor Owen: This is an essential question. I work clinically in the over-65 age group, where there is a lot of terminal illness, some of it in the last six months. You have to understand the population. The population is typically over 65 and frail. There can be a terminal illness, very typically with comorbidity. That comorbidity is often mental health comorbidity. Depression is at rates of 20% or thereabouts. Delirium and cognitive impairment is very common and often not picked up. There is patchy safeguarding, patchy access to social care and, as I know you have been hearing, patchy access to palliative care.
That is the ordinary person in the NHS. I know people who select into assisted dying are not necessarily that mean person, so to speak, but that is just a picture of what it looks like for me when I go to work. That is where one starts. Now think about burden. Well, this is a group that do feel very burdened. You might think some of that is excessive; some of it maybe is natural, given the life stage. So it is a mixed picture.
When it comes to pressure and coercion, I know you have been grappling with this a lot as a Committee, and I know there have been some amendments that address this. We have talked about clause 26 particularly in relation to this. Of course, when it comes back to the training question, you can take evidence on the state of safeguarding and how people are really able to assess coercive control, domestic violence and so on.
I would like to draw attention to something else that I am not sure has come so much to the attention of the Committee, which is not the offences or the criminal side of this; it is the common or garden capacity assessment side of it. This relates really to clause 1. It is the issue of how you deal with interpersonal pressures on somebody in a situation where there may be a mental health problem and there may not even be a diagnosis. 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. But it is there and it is interacting with a form of pressure within a family, let us say, which is often not malign in its intentions, but it exists. It is a very overvalued relationship, for example, with a strong sense of loyalty to somebody, or an enmeshment, for example.
What you have are situations where there is an impairment and also an interpersonal pressure. They interact and they amplify each other. That can have an important consequence in terms of the functional ability of mental capacity. Outside of the assisted dying context, when you look at that in the Court of Protection, which has been struggling with quite a lot of cases like this, that phenomenon of interaction that I am talking about between interpersonal pressure and impairment is recognised. It struggles with it. I have been involved in some research to try to structure the understanding of it, but it is not at the point where it is a kind of training manual that you can lift down from the shelf and roll out across the workforce. It is much more in a kind of research and development phase.
So it is important to draw attention to pressure not necessarily as malign in its intention, but which nevertheless operates in these situations and can have a subtle impact on the functional test of decision-making capacity. To bring us back to what the decision-making capacity is that we are talking about, it is the decision to end one’s own life.
Bambos Charalambous (Southgate and Wood Green) (Lab)
Q
Dr Ward: I heard the session yesterday and would agree with the comments that were made there, particularly around proportionality. Article 2 is an absolute right —the right to life—whereas article 8 is a qualified right. Again, it is about that balancing act. The courts have been very clear that we need to protect vulnerable people, and I feel strongly that the Bill straddles that very well by giving choice but in a very limited set of circumstances.
On the Equality Act, there have been some claims made—this happened in Scotland—that the definition of disability in the Equality Act would cover people who are terminally ill. That that is not my reading of it, and that position is widely shared by the people advising us in Scotland on the legal capacity. That is all I have to say.
Professor Hoyano: I would only point out to the Committee that the common law entrenched the human rights of the patient a long time before the Human Rights Act 1998. We must remember that we do not just have to look at the European convention and Strasbourg. The common law has been very active in entrenching fundamental principles of the rights of the patient, particularly their autonomy in decision making regarding their own body, since long before the HRA.
The Chair
Time allows us to ask more questions. Three people have indicated that they wish to come in. I will start with Danny Kruger.
Danny Kruger
Q
Professor Hoyano said that the person in the street would not see the difference between a patient requesting to die by the withdrawal of treatment versus the active administration of fatal drugs, whereas I think you said, Professor Owen, that you did see a profound difference between that decision on the part of the patient and also, presumably, the act on the part of the medical professional, in the case of either the withdrawal of treatment or the administration of fatal medication. You said that you would be happy to draw that out; could you do so?
Professor Owen: Yes. I am happy to try now, but also to do it further with some written submissions if that would be helpful, because it is such an important point. First, for the man on the street, or the person on the bus, one thing to remember—this comes out in the public opinion polling—is that when you ask about assisted dying, some people think that that is access to palliative care. There is a degree of misconceptions that are out there in the public that are important to bear in mind.
On the distinction between the decision around the refusal of life-sustaining treatment and the decision regarding assisted dying, what are the similarities? Well, they are both about life and death. What are the differences? 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.
So you can discern a number of differences. Could you reduce those differences to one thing and one thing only, and be particularly precise about it? Probably not. I think you are talking about differences that cluster and group, and which we overall accept as a difference of kind.
The other issue here that is important is intention. When you are assessing somebody’s decision to refuse a life-sustaining treatment, the doctor there does not have the intention to end a person’s life. That would be a concerning intention were it there—and sometimes it is looked for, actually, if it is disputed. But of course, when a doctor is involved with a process where somebody is seeking assistance in the ending of their life, it is quite difficult to say that the doctor does not have an intention to end life.
One could go on with a discussion of the differences, but the similarity is that we are talking about life and death.
Kim Leadbeater
Q
Let me come back to the content of the Bill, and to some of your points, Professor Owen. In terms of capacity and coercion, I think we are absolutely having these really important conversations. What concerns me a little bit, though, is whether we are saying we are not confident that two doctors, potentially a psychiatrist and an oncologist, and a judge can make assessments of capacity and coercion between them. What does that mean for things that are happening at the moment? We have talked about the withdrawal of end of life treatment and those things; those assessments must be being done now, all the time, but at the moment there is no legal framework around that. Surely, putting a legal framework around that and having all those multidisciplinary people involved has got to be a positive thing. Professor Hoyano, I would appreciate your thoughts on that.
Professor Hoyano: As I say, whereas I completely respect Professor Owen’s expertise in this as a psychiatrist, for me as a lawyer the question of capacity is a yes or no, necessarily. But capacity is always determined by the Court of Protection in respect of the decision that must be made by the person concerned: do they have the capacity to do it?
When we are talking about a determination of capacity, and also about coercion—which of course is part of capacity in a sense, because capacity is the autonomy of decision making—you are going to be having a very focused inquiry. It is not an inquiry into whether a person has capacity to manage their financial affairs. I probably do not have that capacity, but on something like this I would have capacity. It is important to recognise that it is a yes or no question, which the law has to draw and does draw, depending on the expertise of psychiatrists like Professor Owen, but also forming its own judgment from its own experience, which is why I think the Court of Protection really is the place where this should be.
There is one aspect of the Bill that worries me a lot, and that is the number of people who will be excluded by the provision that the medication must be self-administered. This would mean that Tony Nicklinson, who went all the way to the House of Lords to try to get the right to die, could not have it under this Bill, because he was paralysed. He was a tetraplegic, basically—he was paralysed from the neck down, with limited movement of his head, from a stroke. He lived for seven years with that condition and he would not have been able to self-administer. In fact, when he was denied by the House of Lords—anyone who has seen the Channel 4 programme will have watched him wail in despair—he refused all nutrition and hydration from that point until he died. That was the death he did not want, and I think we need to recognise that there are problems like that. In 2023 in Canada, across the entire country, only five patients opted to self-administer the medication—only five. Even when patients were capable of doing it, they wanted the doctor to do it instead, so let us remember that as well, please.
Dr Ward: Can I make a quick point about self-administration? This is something that in Scotland we looked into in great detail. In Scotland, we chose self-administration specifically because it does not just include ingestion or swallowing. There is a range of ways in which you can self-administer the medication, and I am happy to provide that information to the Committee if that would be helpful.
Lewis Atkinson
Q
Professor Owen: Good question. On the point about that interaction issue, it is not just me picking it up; it is the courts and the Court of Protection particularly. If you are interested, it is footnote (11) in the written submission from the Complex Life and Death Decisions group. The point that you make is well taken from my point of view. You have two doctors, essentially, doing the assessment. Some doctors can be very good at assessing social circumstances; some are not so good. I think it would be preferable to try to get a law that gets sight of social circumstances; one way of doing that may be to insert a requirement that a suitably experienced social worker is involved, so that there is some sensitivity to those contextual, relational, interpersonal effects, which, as I know you are aware, can be very subtle. A lot of these things are extremely difficult to pick up. They are easy to miss and, even when you are aware of them, there can be dilemmas about what to do with them.
Professor Hoyano: Might I add a postscript to that? A model that we could consider in this context is CAFCASS—the Children and Family Court Advisory and Support Service—in the family courts. It is a body of experts—civil servants, in effect—but they are independent and they are accustomed to dealing with specific context with social workers, for example. They investigate what should happen to a child in public law or private law proceedings. It occurs to me that something like that—a report from an equivalent body to the solicitor’s office, which I mentioned before—could be a very good way of building that in, because I completely agree that social workers are likely to be more professionally attuned, by virtue of their training and experience, to looking at the wider context.
Dr Opher
Q
Dr Ward: That picks up on the previous question, which my learned colleagues answered. Good legislation sets a baseline and a legal framework. You can take a kitchen sink approach to legislation, and you will end up with something that is completely unworkable in practice. There is an awful lot that guidance needs to pick up and should pick up. I understand that only certain things are appropriate for secondary legislation, but you should not try to legislate for every eventuality in a Bill.
On my reading of the Bill, there is nothing that prevents a multidisciplinary team from being involved with this. The Bill sets the baseline: there must be a minimum of two doctors. What happens in practice—and this should be picked up in guidance and secondary legislation—should be developed in conjunction with professional bodies: clinicians, allied health and social work. They are the appropriate people to develop that guidance, not legislators. I would say, “Be cautious about how much you put on the face of the Bill, because you might end up with something that is unworkable.”
Naz Shah
Q
Professor Owen: There are a lot of gaps. Take that point as I intend it—I do not say it as a downer on this project; I say it because it is true. There are just a lot of gaps. We are going into uncharted territory, so you might think it would be good to have more of a map before we start. This is one area where there are evidentiary gaps. It is not clear how those sorts of interactions should be assessed, what sorts of threshold should be set or what kind of training should be available. There has been a lot of talk about training; training is all very well and good, but you need to know what the point and purpose of the training is. The training has to be valid before you can roll it out. There are lots of gaps here.
That relates to the question of mental capacity assessment. It is often said, “Why are we worried about mental capacity? We have so much experience of doing it in health and social care contexts; we have the Mental Capacity Act, the Court of Protection and all this experience.” We do, and that extremely important work has been done since the parliamentary discussions you had about the Mental Capacity Act all those years ago. In some areas, it is being done reasonably well: in relation to treatment and care residents’ decisions, one can talk about a body of professionals who understand the concepts, can do the assessments and can achieve, at least when trained, good levels of agreement, so you can get the system to work.
But 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. That can be shown empirically in other areas where the decision making is unsettled. The question of how well capacity assessment works is actually matter-specific. That should not surprise us, because the whole concept of mental capacity is that it is matter-specific. That is the whole functional idea of mental capacity. The matter here is of the decision making to end one’s own life.
The Chair
That brings us to the end of the allocated time for the Committee to ask questions. I thank the witnesses on behalf of the Committee for their evidence.
Examination of Witnesses
Professor Preston, Dr Richards and Claire Williams gave evidence.
The Chair
Q
Professor Preston: Hello. I am Nancy Preston, professor of supportive and palliative care and co-director of the international observatory on end-of-life care at Lancaster University. I am the co-lead for the European Association for Palliative Care taskforce, where we try to prepare guidelines for clinicians in countries where there is permissive legislation on assisted dying to help people whether they are involved or not involved.
Dr Richards: Hello. I am Dr Naomi Richards. I am a senior lecturer at the University of Glasgow, and director of the end-of-life studies group there, which is a research and teaching group.
Claire Williams: Hello. I am Claire Williams and I am chair of the Greater Manchester research ethics committee. My background is one of nursing, but my focus for many years has been on ethical decision making in clinical research. That work inspired the proposal that I submitted. As you are aware, the proposal outlines a committee-based model for decision making in assisted dying cases, offering an alternative framework to that which places sole responsibility on a High Court judge. I believe that approach is far too narrow for such a complex and sensitive matter, and it is simply too much to expect one person to carry that burden alone. The proposal really shifts responsibility from that one individual judge to a panel of professionals, ensuring that decisions are made collectively with robust safeguards in place.
The Chair
I ask colleagues to ask one question, indicating who you wish to answer. If there is time at the end, I will open the floor for further questions.
Sean Woodcock (Banbury) (Lab)
Q
Claire Williams: I am not familiar per se with the types of drugs that will be used for assisted dying cases. In terms of my experience in research ethics, we make life and death decisions on a daily basis and decide whether we would offer patients the opportunity to take very experimental drugs. That is particularly difficult when dealing with terminally ill patients. What is so beneficial with using a committee-based model is that those decisions can be made collectively—decisions that are very similar and have real parallels in terms of ensuring that patients have fully consented, that they have capacity and that there is no coercion involved in recruiting them to clinical trial. That is how I see those parallels and how I feel assisted dying cases should be considered.
Jack Abbott
Q
Professor Preston: The decision to go into palliative care is often made more by a clinical team, recommending that there be changes in the goals of care and what we are to aiming do. There are two big European studies looking at that at the moment, in chronic obstructive pulmonary disease and cancer. It is about trying to get triggers so that those changes in care can happen, because people cannot make decisions unless they are informed and they are aware.
Equally, when it comes to assisted dying, we have done interviews with bereaved families and healthcare workers in the United States, the Netherlands and Switzerland, and also with British families who access assisted dying through Dignitas. We hear from the family members that it is something they have really thought about for a long time. It might come to a crunch point where they know they are potentially going to lose capacity, they are potentially going to lose the abilities that are important to them—although for someone else, losing them may not be an issue.
That is when people start to seek help. They usually first seek help from one or two family members. There is often secrecy around that, because you do not want everyone talking about it. It is quite exhausting to talk about. It is a decision you have made. Then they seek help from healthcare professionals, and that is where they get a varied response depending on who they access. It is a bit of a lottery, because it only a minority of doctors will be willing to do this. That is where the challenge comes in.
Dr Shastri-Hurst
Q
Professor Preston: The submission was with my colleague, Professor Suzanne Ost, who is a professor of law, and that very much came from Suzanne.
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. It would be a bit like if you go to A&E with a child and they have a fracture. The presumption there is to ask, “How did this happen?” and “Do we need to rule anything out?”, rather than just assuming “Well, they have just fallen over” and that things are exactly as said. There is an element of that, where we are not presuming capacity, but are actually going into it and switching it around within the training to ask, “Do they have capacity?”. I think that would be a change within the Mental Capacity Act.
Lewis Atkinson
Q
Dr Richards: There are two things that I would like to say about this. The first is that it is individually specific, which probably will not come as a shock to you. The evidence shows that the people who request assisted dying are people who have a particular preference for control in their life, and they have had this preference across their life, so it is part of their identity. In that sense, it is a personal preference as opposed to a deficit in palliative care, which is what we hear a lot about.
The second thing is that, with regards to autonomy, proponents of assisted dying are very keen to emphasise that this is an autonomous decision, which it is, and would have to be by virtue of the law. However, that does not mean that families, loved ones and close social relations are not really embedded in that decision making. It is important to think of autonomy as relational rather than as an isolated making a decision not in relation to others. It is also important to think about the impacts on the family when you are thinking about the guidelines that would go along with any legislation.
Danny Kruger
Q
What we do know is that there is a combination. In two thirds of deaths in Belgium, I think, and in the United States, where I have visited, the first drug that is used is an anaesthetic, and then there is a paralysing agent. A paralytic drug is introduced, which often gives the impression that the patient is having a peaceful death, but we do not actually know what is going on beneath the surface. I am afraid to say that, from studies into people who have been on death row who have been legally executed, there is often evidence of brain trauma. Can you speak to this at all? We know that in a minority of cases real complications occur—it often takes a very long time for the patient to die, and there is vomiting and all sorts of distress. How can we improve what we know about the actual process of dying, and how can we reduce these terrible complications?
Claire Williams: I can only apologise, because I am here to give evidence about a model for collective decision making rather than about my experience with regard to these drugs. As you say, the potential side effects and prolonged deaths are something we will need to consider for these cases. We need to take evidence from other countries that have had this experiences. Apologies, but I cannot comment on this particular aspect.
Kit Malthouse
Q
Dr Richards: Assisted dying is quite categorically different from the end-of-life scenarios you are talking about there, so you would expect a very different set of safeguards. It is a misunderstanding to think that assisted dying is of a piece with other life-ending decisions. It is really something quite different and requires a different framework.
Dr Tidball
Q
Dr Richards: Quantifying dignity or respect—
Dr Tidball
Or real-life examples?
Dr Richards: So the question is: what is the evidence on trying to find out about this interactional space where you are asking about people’s motivations? Is that right?
Dr Tidball
Q
Dr Richards: By holistic processes, I assume you mean the multidisciplinary team conversations that we talked about in the previous session.
Dr Tidball
Yes.
Dr Richards: Maybe Nancy knows the evidence on that. Talking about gaps in research, I am an anthropologist, so I am interested in the discourse and the conversations that are happening, and I think there is a lack of evidence about that. We have a lot of evidence where it is tick boxes, for example, about motivations and procedure being following. We have less qualitative, in-depth, interactional evidence about that kind of holistic decision making.
Professor Preston: We have done some research where we interviewed doctors and healthcare workers who have had those conversations. The majority decide against it, but they are still having those conversations. We also heard the experience of the bereaved family, and what it was like to have those conversations. On the whole, the conversation is predominantly about palliative care—“Can we do something different? How can we meet and assess your needs?”
In some cases, the doctors in palliative care, particularly in Switzerland, certainly would never suggest assisted dying, but if the patient asks for it, they equally do not advise them how to get an assisted death. In some cases they said they sort of consciously blocked the conversation, so that the person timed out and could not have it. The emphasis is perhaps the other way in places like the Netherlands and Belgium, where it has been around longer and is much more integrated into other services, such as care homes and palliative care, as part of a holistic assessment.
I remember visiting a team in the Netherlands, and when they got a new patient they said, “We assess them for their preferences about whether they want to die, about resuscitation, about advance care planning and about euthanasia.” My jaw dropped; I was British—this was illegal. They do it in such a natural way. They said, “We need to plan that for them, because we need to understand what is right for them.” They are not suggesting it—they are just trying to take it on board. I would say that the predominance of the conversation is about palliative care, but if the patient wants the assisted death, they either might assist—which is rare—or suggest how they go to a right-to-die association. But more likely they will still tell them how palliative care can help.
Naz Shah
Q
“Consider whether there should be a stated exception to the usual presumption of capacity under the Mental Capacity Act 2005 in the Bill.”
What kind of standard do you think Parliament should consider adopting instead of the use of the Mental Capacity Act, and why do you think that?
Professor Preston: Again, this came from my colleague Suzanne Ost, who is a professor of law. As Naomi said, this is something very different from choosing to consent to an operation or even a research study. This is finite—it is a finite decision, so therefore the assessment should be a bit more. What I will say about mental capacity is that we had a PhD student who assessed mental capacity decisions by hospice care staff—particularly doctors, but also a lot of the nursing team who were making the decisions. She was a lawyer, and her conclusion was that it was incredibly well assessed. That was in terms of safeguarding—so, when people were going back to what we might consider unsafe homes—but that is what the person wanted, because their life was that unsafe home. I am talking about social deprivation and things like that. The people in this particular team were very good at assessing that and applying the Mental Capacity Act, according to her research.
Rachel Hopkins (Luton South and South Bedfordshire) (Lab)
Q
Claire Williams: I absolutely agree that a panel/committee approach would have better safeguarding for patients, because the decision is being made collectively with legal expertise and with other healthcare professionals—that might be palliative—or ethicists like myself. It is having that collective view, ensuring that everybody is happy and that that is exactly what the patient wants. I believe it should be a committee/panel-based approach for the final decision. As I said before, expecting a High Court judge—just one individual—to make that decision alone is hugely burdensome and not an approach that we should be taking.
Tom Gordon
Q
Professor Preston: There is a bigger and bigger conversation in a lot of these countries, including the Netherlands and Switzerland, that this is not about healthcare. I know that sounds a really strange thing, but it is about self-determination and a life choice. I remember someone saying to me, “Well, you wouldn’t check who I’m marrying.” They feel it is such a personal choice. I think patients do bring this up. They bring it up all the time now. Studies in Spain have shown that if a patient has a desire for hastened death, the best thing you should do is explore that desire. Why do they have that desire? How can we help you? Are there other needs we can meet? Most people will not want to then go ahead and have an assisted death. This is a minority of people. Could you remind me of the rest of your question?
Tom Gordon
If you have systems where assisted death is offered outside the healthcare setting, as in some of the countries around the world that you have mentioned, how does that limit people’s access to it? Do you think that has an impact?
Professor Preston: I think it almost enhances their access to it. At the moment, they get lost in the system. They are usually trying to find these two magical doctors—in a lot of countries, you still have to find those two doctors. Most doctors, even if they approve of the idea of assisted dying, do not want to be part of it. They might assess, but they might not prescribe. They might prescribe, but they would not administer. Trying to find those doctors to do it is really quite challenging. That is what we get back from the bereaved family interviews. How do you navigate a system where you cannot access the people you need to get to? People go doctor shopping—they are going to multiple doctors until they get the right answer.
If you keep it safer, outside of healthcare, people can talk to their doctor—they will mainly talk to their nurses, because they are the ones who do end-of-life care predominantly—and they can say, “Actually, that is not something we can do, but if you want to see, we have a stand with information about it. This is the service you can go through.” It is the same with the GP—things like that. I think it might actually make it easier for people to navigate. That is where I came to the idea of keeping it outside. It is a supportive way for patients and families because, on top of all this, they are dying. They are having a really difficult time and we are trying to get them to navigate services that are incredibly difficult when you are trying to find two doctors.
Just finally, on top of that, it is quite secret who does this. Doctors do not want to tell people. I have had people who do this—who might just assess and may not prescribe or administer—and they do not want people to know in palliative care because it does not go well for them. They are concerned that people will not like it. I do research in this area, and some people think that means that I am trying to push for assisted dying. I am not; I have a neutral stance. I will say things pro; I will say things against. But it is quite difficult for people involved. There is a bit of a taboo—there is a secrecy. It makes it even harder to say in the Bill, “Recommend another doctor.” It will be a challenge to find that person.
Dr Richards: May I add something? The evidence suggests that one of the implementation challenges with assisted dying is finding doctors willing to participate—consciously participate—in this practice. However, I think what you are asking there is about a more Swiss model of assisted dying. There is a reason that the Swiss model of assisted dying has stayed in Switzerland and gone nowhere else—it has not transferred or translated to other jurisdictions, because of its uniqueness and the practical challenges of disentangling it from a healthcare system.
It is important to recognise that, but we are also talking a little about disentangling assisted dying from palliative care. It is important to recognise that the majority of people who request assisted dying—who receive assisted dying—are within palliative care. They are already in that, as I am sure you have heard already. To disentangle assisted dying from the specialist communication around end of life would seem to be a self-inflicted problem of design, in my view, because it is safest being held there by the experts for those who want to get involved in it. It is safest being held in the healthcare system. As I say, there is a reason why the Swiss model is the only model where that happens outside a healthcare system. That is localised to Switzerland.
Dr Opher
Q
Claire Williams: Again, those safeguards would need to be in place. There would be concerns if they were not actually giving the drug to the patient, and seeing the patient take the medication. Yes, robust safeguards would need to be in place.
The Chair
Could you make it a supplementary? I want to get Kim Leadbeater in, and then we can come back to it.
Kim Leadbeater
Q
Dr Richards: In covid, we did research in care homes, and there was real concern about “do not resuscitate” orders and emergency care plans that were blanketed across the care homes. Care home staff were traumatised by that, so there are real issues. We know that there are real issues day to day in how people are treated within the NHS. I think it is unconscious—I do not think people are intending it—but we know that people are treated differently and that different things are done. That is partly why we think a system outside that would protect them, because then you are not within the healthcare team that is treating you and giving you advice about such things, whereas if you are having to opt into a system where you have to do something more, they will not feel like it. That does not happen in the hospital. It is about trust.
One of the issues in Switzerland—I must just add, the same Swiss system is being adopted in Germany and Austria, which already has a panel—is that they are trying to protect these people by keeping it one step removed, so that people do not feel that they are trying to be persuaded to an assisted death. Most hospitals in Switzerland will not allow assisted dying to occur, because they do not want a lack of trust in their patient group. Instead, they will sometimes allow the right-to-die associations in to do this and there are just a few hospitals that allow their staff to do it. It is all about trust.
Kim Leadbeater
That is really helpful.
Dr Richards: I do not think there is any evidence that there is a loss of trust in doctors post legalisation—I just wanted to add that.
As I said in response to the earlier question, this is a categorically new thing that would be coming into society, which would cause cultural change in how we approach, think about and anticipate dying. It is a big deal—I know you all know that. Accompanying it, therefore, there needs to be really sensitive information delivery that is appropriate across society and that will alert people to this. In particular, if you are going to have a system where doctors are not allowed to raise it with patients, people need to know about it. That is one thing.
Reducing people’s fears is also important. I mean, there are so many misconceptions about assisted dying, even among people who have spent quite a lot of time reading about it and researching it. It is a very simple thing, but the discourse in society has been going on for so long that there is a lot of misunderstanding.
Kim Leadbeater
Q
Dr Richards: Misunderstandings of what it is? Fundamentally, that it is not based on the principle of autonomy and that it is something that can be done to you, without your consent. You would not want the general public to think that. At a very basic level, it is understanding that assisted dying—the very phenomenon that that term encapsulates—is a phenomenon that starts with the patient. It is a request made by the patient because of their subjective assessment of their quality of life as they are dying. At a very fundamental level, you would want to communicate that to the public. It is a huge piece of work to have to create an informational context that is variegated according to the starting position of people’s knowledge base around it, and to bring in something that does not scare the public and so they see it as something that can be positive.
In jurisdictions that have legalised, even post-legalisation there continue to be elements that resist it. However, you start to see positive stories of the kind of ceremonial aspects that can come when you can time death. There is a whole cultural piece around new rites—new rites around dying that are being created when people choose to have an assisted death, and the new dying time or space that is opened up there, as well as the intentional actions that can happen from people’s social groups. Post-legalisation, it is not just fear—I think you get a balance of stories coming through—but it is something that you need to attend to.
Liz Saville Roberts (Dwyfor Meirionnydd) (PC)
Q
Dr Richards: I think you probably know the answer is that it is not patient-centric. In Marie Curie’s “Better End of Life Report 2024”, which was a representational survey with bereaved relatives, a third of people did not think that their relative even knew that they were dying. We still have a long way to go in communicating to people that they are in a terminal phase, so that they can find whatever residual value is in that period of time for themselves and their family. So, no, definitely not, but that is what we are striving for. I am sure that that is what all healthcare professionals are striving for.
In terms of assisted dying, it would be so explicit. It is categorically different from other kinds of conversations that are much more open-ended, like goals of care conversations at end of life. This is really quite specific, to the extent that you can actually give doctors a form of words to use, because their request for this procedure needs to be so categorical and there needs to be no ambiguity around that.
In a way, this conversation about assisted dying is actually different because it is very up front, it has to be very categorical and it has to be documented. In that sense, it is extremely patient-centric, and there would be no using euphemisms, which happens in end-of-life care, when what doctors think they have told their patients they do not hear. They have heard something else, because euphemisms change according to—well, you do not even have to go so far as to talk about different communities or cultural groups; they change from one person to another. I think this would require quite specific language. It would bring things into a much less ambiguous kind of territory.
Juliet Campbell (Broxtowe) (Lab)
Q
Professor Preston: I think it is about having that additional consideration. When additional consideration for, perhaps, social deprivation or about people from minority groups is in the training and is at the forefront of people’s thinking, they can address it.
I will give you an example. We did a study looking at access to palliative care. I know you have heard a lot about there being a postcode lottery and things like that. One of our areas is one of the most deprived coastal communities in the country, and yet it had equal access for people across all areas of society, because they brought in people to target anyone from those socially deprived areas.
Equally, at the beginning of the first wave of the pandemic, at one of the big London hospitals, we analysed the data because we were concerned about access to palliative care services. Were people accessing it during the pandemic? We also looked by ethnicity. What we found was that not only during the pandemic, but pre-pandemic, if you were non-white, it took—I don’t know—three or five days longer to get that referral.
We had an idea that from some of the research we had done on social deprivation, people are making assumptions. It is not about people making horrible decisions, but they are making assumptions: “Oh, they will have a big family—the family will look after them. This will happen or that will happen.”
The nurse consultant, Claude Chidiac, went in and did training for the staff and said, “Don’t assume that just because people come from an Afro-Caribbean family that they have got this big family.” Within a year, when the second wave happened, the difference had gone. It can be at the forefront of training and you can make people really think about it. I would say—I think someone said it yesterday—that there is almost an inverse inequality, because I think those families and those communities will be really trying to protect people from even thinking about going for it.
Daniel Francis
Q
Claire Williams: Again, I can only apologise, as my evidence is about a committee-based, panel approach to decision making rather than what happens at that point of end of life. I do not know whether somebody else is able to come in.
Professor Preston: I can take that if you want.
Daniel Francis
Thank you, Professor Preston. Sorry—if you agree, Mrs Harris.
The Chair
I wondered who was chairing for a moment.
Professor Preston: We raised that concern about doctors staying with people for prolonged periods of time. I think it will come down to what “self-administered” means. In our written evidence, we said that, in Switzerland, that has increasingly meant setting up an intravenous drip and the patient opens the port. In that case, you are talking about different drugs and it would be much speedier. But we have data on oral ingestion from Oregon, and I think 30% of cases took an hour to die. Most of us know that in the NHS, an hour with a doctor will be pretty unlikely, even if they are in another room. Most assisted deaths across the world occur in a home or a nursing home, so you do not have doctors there—we are not talking about GPs being out for prolonged periods of time. The method of administration may change that as well.
The other thing is that doctors are not used to being with patients at the end of life—it is nurses and healthcare assistants. So you are actually bringing in a new role for them to be with someone as they die. I am not saying that they have not had that experience, but they are not the traditional healthcare workers who are at the bedside. Again, that would need to be accounted for in the training so that they are more used to being around people who are at the end of life. They will have had some experience, but it is very much in the realm of healthcare assistants and nurses.
Naz Shah
Q
Dr Richards: It would have to be. Those examples that you have just given would not mean that it was not an explicit conversation.
Danny Kruger
Q
Professor Preston: I think we suggested a panel. I submitted some evidence after the last Select Committee inquiry about a panel that could operate outside. Lots of the reasons I gave were about helping to navigate, helping to identify doctors and helping to support people who feel vulnerable within the NHS.
What increasingly came out from the idea of a judge is the question of what exactly their role is and the fact that there is no right of appeal. However, if you had a panel, that would give a much more thorough understanding of what is happening. The additional safeguard is that the panel could say there needs to be a palliative care consultation. You would have to be sure the doctors who are doing it are, based on their register, qualified to have a palliative care conversation so that all options have been explored.
My fear is about if we do not specify what training is or what these people’s expertise is. Most doctors do not know too much about palliative care or what the options are. You do not need to see a palliative care doctor, as a palliative care nurse can talk you through it, but the additional power of that panel is that it could be answerable to the court or some other sort of assisted dying tribunal.
Lewis Atkinson
Q
Dr Richards: The Bill covers terminal illness only. It includes people with six months left to live, so it would not include the phenomenon of old age rational suicide, which is where you want to end your own life for reasons of the accumulated losses of old age, or because you feel you have lived a completed life. This really relates to people who are in what is called the fourth age of life. It is a social and cultural phenomenon that there are people in the fourth age of life who want to wrap things up on their own terms, but this is a separate phenomenon to people who are in a natural dying phase of life and want to accelerate that. It is different.
After you legalise assisted dying for terminally ill people, you will still get older people taking their own life. The highest demographic for completed suicides is people over the age of 70. It is a phenomenon around the world, but it is a qualitatively different phenomenon to people in a natural dying phase. If we look at the data on who requests assisted dying, it is people who want control and agency, and they may even have thought about it as a mode of dying that they want to access before they even had a terminal illness. They might have always imagined that, but that is in conjunction with various forms of suffering that they will be experiencing. It is not just personal preference; they are also suffering, and suffering is very multi-faceted and multi-dimensional at end of life. It has various different components, not just physical.
The Chair
Before we move to the next panel, is there anyone else who has pressing questions, or would you prefer to have a five-minute comfort break?
Naz Shah
Q
Dr Richards: I do not really understand why the case of terminal anorexia would be different to any other case in terms of the conversation. It would be necessary to have a very explicit conversation with somebody requesting assisted death; it does not matter what their illness is.
On the issue of anorexia, the numbers are really tiny. In the Oregon model, which is what is in the Bill, you are talking about one or two people in the history of assisted dying. It is a very minor issue to get focused on. I have seen so much about this in the press and being discussed here. If you are very concerned about terminal anorexia, I am sure you could do some tinkering with the Bill so that people would not be eligible for assisted dying, but in terms of the empirical data in jurisdictions that have legalised the Oregon model, which is what this is, there are one or two cases.
This should not be given a huge amount of time, because it is a distraction from the fact that really we are talking about a new mode of dying, which is a cultural response. Just as palliative care is a cultural response to suffering at the end of life, so is assisted dying. It is a different track; it is offering something different. Different types of people will want to go for that. It is a response to the protracted dying trajectory that we see now, which is new. In the history of human dying, we have never taken so long to die before. There has never been so much medical intervention at the end of life, and assisted dying is a cultural response to that. To get fixated on the two people with terminal anorexia who have accessed assisted dying in the States is a bit of a red herring.
Kim Leadbeater
Q
Professor Preston: We have heard lots of evidence about training schemes around the world. To be honest, I think they are still developing, but we can look at the good elements of those and at what has and has not been evaluated. We can do it almost like action research, where you are learning as you go, and we can improve the training as we go.
Most people do not die under palliative care. This Bill will affect general care; it will affect specialist care, but not in palliative care. We need to train those people as well, because they will be having a lot of these conversations. We are doing that training now, which is about how we talk to someone in a compassionate way. How do you help people to understand that they can be involved in the decision making? What might the goals of care for you be, and what might a goals-of-care conversation look like?
We have lots of this training already. Palliative care has huge expertise in this with advanced care planning and the rest of it, so it is about getting some of that incorporated. It is not just about saying, “This is what an assisted death would look like. This is how it would process.” It must be more than that, and we need to help people to explore their end-of-life choices. How do you want to die? Do you want to die at home? Do you want the cat on the bed? It is about all those things that are really important to people, but we must have that conversation and explore them, and it is quite hard to get clinicians to have those conversations. There will be a special group of people who can manage this; they will need training and support.
The Chair
I thank the witnesses on behalf of the Committee. We will suspend until 3 pm, which gives us six minutes.
The Chair
Q
Pat Malone: My name is Pat Malone, and three members of my family died in dreadful circumstances, two of them by suicide, and I think the circumstances of their deaths would be useful for the Committee to know before any decisions are made.
Liz Reed: I am Liz Reed. My brother had an assisted death in a hospice in Queensland, Australia. Their law is very similar to the Bill—the assessments, the focus on coercion—so I am here to share how the law works in practice for a dying person and their family.
Kit Malthouse
Q
Pat Malone: I am not familiar with the situation in Australia. The two suicides in my family were outwith the law, and the third death I was going to talk about was a natural death—we would call it a natural death—so I am sorry but I cannot make a comparison.
Liz Reed: The system in Australia is, as I said, quite similar to what is being proposed here. It felt like throughout that process for my brother, Rob, it was really caring and respectful. He was able to change his mind, which he did, in terms of dates and when it would happen. His views and the views of his family were also taken into account and, through the process, he was treated like a person with autonomy whose choices were being respected.
The Chair
Q
Julie Thienpont: I am Julie Thienpont, and my husband and I were living in Spain at the time. My husband was diagnosed with mesothelioma and given three months left to live, so he opted for assisted dying. It was quite a rigorous process in Spain. It only came into law there in 2021, and he was one of the very first people in the south of Spain to take the opportunity of assisted dying.
Tom Gordon
Q
Liz Reed: As I said, my brother died in a hospice in Australia, where the hospices are extremely well funded, and the care he received was sensational. The team and the staff in that hospice made the time he had in there. Obviously, it was not amazing, because he was dying, but for a really difficult situation, it was comfortable for his family, and he had young children. You could not fault the care and access to the medication. We as a family, after he died, went back to the hospice to say, “This was changing for us and for him.”
But it did not change what was happening to my brother. He went from a hospital to a hospice, and he had a date planned for his death. He then actually changed his mind and extended it, because it was better than being in a hospital and the hospice care was great, but he still landed at the same point of saying, “This is not living.” It was not what he wanted, and not what he wanted. From a personal perspective, when he was diagnosed, we said, “You’ve got to come home.” But actually, I think, “Oh my God, what would have happened to him? How long would he have had to go on? How long would his children have had to watch him?” He was only 39 and his children were young, and they did not have to—they still remember their dad. For him, for his wife and for our family, I would not change anything.
Lewis Atkinson
Q
Pat Malone: In all three cases, it would have improved their lives and their deaths. My father died at the age of 85 from pancreatic cancer. He asked me to help him kill himself while he was in hospital in the last three or four weeks of his life. Obviously, I was not able to do so. He suggested that I put poison in his water, which I had no idea how to action. I spoke to his consultant and asked whether he could do anything to hasten his end, and he said, “No, no, no, I can’t.” After that, he lasted another three weeks and he had a horrendous death. It has scarred our family to this day.
My brother contracted the same disease, pancreatic cancer, and having seen my father die, he—having gone to six doctors and asked them whether they could help him end his life; he was under home hospice palliative care at that time—contrived his own suicide. Unfortunately, he asked his wife to sit and hold his hand while he died, as a result of which there was a police investigation into collusion. She and her daughter, who was also in the house at the time, were not cleared for eight months, during which they were interviewed repeatedly about anomalies and what they did or did not know. It was absolutely unconscionable to pile that on top of their grief, at a time when they had just lost their father and husband.
My sister’s death, having seen those two deaths, was much easier. She got motor neurone disease and was not really suffering in the way that my father and brother had been. She knew that her end was going to be as a live brain in a dead body, and that was the horror that she faced. From the beginning, she was fixed on going to Dignitas, which she did. It was not easy because, after the example of my brother’s family, she would not allow anybody in her family to have anything to do with the arrangements that she had to make, which were quite complicated and became ever more difficult for her. First, she could not drive a car any more and was going around on a mobility scooter, gathering endless documents and having all the tests that you need to have. Ultimately, she said, “This is my golden ticket.” When she was accepted by Dignitas, she said that it was the greatest relief of her life. She said, “I know I am not going to get cancer or dementia. I’m going to die painlessly at a time and place of my choosing.”
That is exactly what she did, but she died 1,000 miles from home. She should have died in her house with her family, and her dogs on the bed. She should not have been denied that. Had this Bill been enacted in her time, it would have been a much easier operation. The problem with this legislation mainly is that it is so long overdue. There are people now who are in that position. You may think our family is star crossed because we have had three deaths like that, but I think we are just a normal family. It is happening all the time. Chris Whitty talked on Monday about how we should not rush into this. We are not rushing into it; we are at the back of the queue, really.
Rachel Hopkins
Q
Julie Thienpont: Guido had decided right from the word go, even before he got sick, that that was the way he would want to end his life, if there was a possibility of it. He was from Belgium originally, so he expressed a wish that if ever he needed it, he would like to go back there.
The law in Spain is very similar to the Bill, which I have read through countless times. There are a lot of similarities. There were very rigorous checks. It involved much paperwork, counselling and family liaison. The difference was that it went before a board, so it was a panel that would allow or not allow the decision—it was not decided in a court. That would be the main difference, but the process was rigorous. It was slightly difficult for me, because although I can speak Spanish, the terminology was frequently more difficult, so they very kindly translated for me. They explained everything: what would happen and how it would happen, if it happened. It was a big celebration for Guy when he was actually granted this. They also told us that he could change his mind after he had made the decision, should he wish to. He did once. It was me who asked him to do that, because I did not feel he was sick enough, which sounds a bit silly, I know.
He was an intensely private person. The palliative care in the part of Spain where we were is excellent, but it was quite irrelevant for him because he had already expressed that he wanted to die at home. We lived up a mountain; we were quite remote. Being such a private person, he never wanted to be in a situation where somebody else had to see him in any vulnerable situations, especially with personal hygiene and so on—even me, although I was able to help him in many ways. I had to do a lot of procedures for him, after being trained to do so, but he was more than happy with the situation of having assisted dying once it was granted. He did not need any other sort of care, although we still had a nurse coming every few days and the family doctor came up at least once a week. That does not sound much, but he did not want her any more often than that.
Danny Kruger
Q
Pat Malone: She would not qualify, because there was no telling how long she would live as a live brain in a dead body, as she said. It could have been months or even years, so she would not qualify in any case under this Bill. However, you have moved mountains to get to this point, so the last thing in the world I want to do is pile more requirements on the Bill. I would like to see some stuff stripped out of it, actually, to make it easier, but I am not going to ask for that because we desperately need to get away from the status quo. This Bill gets us away from the status quo.
Naz Shah
Q
Julie Thienpont: Maybe I said “counselling”, but it was not a session of counselling. It was somebody asking my opinion to check that I was 100% behind Guy. His son also did that by proxy—via us—because he was in a different part of Spain. They wanted to ensure that he had talked it over with family members. It was not hastened along, because he had been given a short life span, so it did not take terribly long. He had to wait about three weeks before the initial ball started rolling, and then two weeks later a family doctor and nurses from the hospital came round for form filling, reading through, translating and signatures, and again another two weeks after that. Each time, I believe it went before a panel. We did not, but the paperwork had to go before a panel. They were left in no uncertain terms that that was the way he wanted to end his life.
It was a very peaceful, serene and beautiful death, as opposed to what it would have been like. He was able to speak to his relatives in Australia, his brothers in Belgium and other family members, and I was able to hold his hand. Guy had always been a bit of an old cowboy, and he always said that he wanted to die with his boots on. I am proud to say that that is what he did. At the end, we were holding hands, and I said to him, “Don’t be afraid.” He said, “I’m not afraid,” and he winked at me just before he closed his eyes.
On the process, perhaps I should have said that it was intravenous, so he had a drip in each arm. It was quite a quick process—maybe 10 to 15 minutes, which I thought was quite quick—but we had had lots of time that morning, you know. It was a beautiful end—the wink especially. I am left with very good memories of such a peaceful death, which was going to happen regardless. He was at peace with it, so that helped me.
Naz Shah
Q
Liz Reed: I understand the big focus on coercion. It is very similar in Australia. The difference between the Queensland Bill, specifically, and the Bill proposed here is that, in the Queensland Bill, coercion is punishable both ways: you can be punished for trying to coerce someone into an assisted death but also for trying to change their mind the other way. Those safeguards are in place because you hear anecdotally from practitioners that, broadly, people are being coerced out of this.
In our experience, the day before my brother died our mum said to him, “Are you sure?” She was not trying to coerce him, but was she trying to make him go on longer? Absolutely. That is her son, and that is completely natural and normal. She did not want to see him die. His response was, “This isn’t living.”
Naz Shah
Thank you very much.
Pat Malone: As far as my brother and sister were concerned, there was no check for coercion. There needs to be, as in the Bill, but there are many more safeguards in the Bill than there are now. The people who are contemplating suicide now have no safeguards at all.
Dr Opher
And he was having excellent palliative care, so what was in his mind, do you think? Why did he decide on that option?
Liz Reed: He knew he was dying. He was diagnosed in October 2022. Just to be clear, in the period before his health started to really deteriorate, he had a great time. He went fishing, he went to the beach—it was like an advert for Australia, how great his time was. He quit his job, he was with his young sons, and he had a lovely time. But his treatment stopped working. He had had every treatment and, even though he was on the pathway and had started the voluntary assisted dying process, he was still having immunotherapy. He wanted to live. His family wanted him to live. But he got to the point where he knew he was absolutely not going to live, and that it was a matter of time. He said that he was afraid not of dying, but of dying in an awful way. He was worried his lungs were filling up with fluid. He thought he might have a heart attack. He was afraid of that happening; he was not afraid of dying. He was not depressed but he knew what was coming. He felt, in his own words, “I’m just sitting here waiting to die.”
He had had experience of a friend whose wife had died, and she got so bad that her young son could not visit her any more because it was too frightening for him. My brother’s children will remember who he was: this big, 6-foot-6, rugby-playing, fun dad. He got to choose: “Actually, I’m ill enough, I’m frightened of what might come down, which I know is going to happen anyway, and I choose now.”
Kim Leadbeater
Q
Liz and Julie, I am interested to know whether you think any aspects of the processes that you went through in Australia and in Spain could have been done better or improved. Is there anything from your experiences that we could learn from to enhance what we are trying to do here?
I also have a question for all three of you—and Pat, goodness me, to come here and tell your story after everything you have been through is unbelievably brave, so thank you. What impact did these different types of death have on your grief and on bereavement? We are talking about different types of death, so I think it will be helpful to think what that looks like for people.
Julie Thienpont: It is a very good question, because I think it did impact my grief. There is not anything that I would change, for definite, about that, but I think I mentioned that I had not tried to talk Guy out of it the first time around, but I did say, “Don’t be so hasty, because you’re not as sick as you could be.” He was still getting up and dressed every day and managing pain, so we had that discussion. On the only day that I ever knew him to stay in bed a little bit longer, I knew he was thinking about phoning to say that he was ready, and he called me to him and said, “Come and sit with me. I want to ask you two things.” The main one relevant to this is: “Don’t try and talk me out of it this time. I’ve made the decision. Don’t try and talk me out of it, because I don’t want you to be impacted in that way.” The second one was to “be strong”.
Both those things have impacted my grief, because I was so strong for 12 whole months and I just thought, “Yes, we’ve gone through that. It’s been great, and”—not “great”. Sorry, I am using the wrong terminology, but for me, it was so good to know that he died so peacefully and he was at peace with himself. That happened and I thought, “Right, now I’ve got to do the ‘be strong’ bit,” so I did that. I did want to talk him out of it again, but I did not, and I was very strong, and then all of a sudden, one day, grief did start to creep in, obviously. Suddenly I thought, “Hang on, he’s not coming back.” That is a normal grieving process, but it held off a little while.
The pathway that the grief I experienced took was that every day I had a different memory of us sitting somewhere, being somewhere or doing something. During the last months that we had together, knowing that he was going to die—sorry to sound like a bit of a romantic—our love intensified so much. You know that everything you do, it is probably going to be the last time you do it. It is almost like an unbreakable bond between you: you are both in this situation together and you are going to get through it, you are going to be strong, and you are going to be there for each other. I think that carried me so far, because those four months that he lived were the best four months, in the sense of our closeness and how supportive and caring we were for each other. It makes me smile now. When I think of his passing, I smile. Yes, I do get upset and I miss him a big lot, but I smile because everything worked out the way he wanted it to.
Kim Leadbeater
Thank you so much.
Pat Malone: My experience with my father was entirely different. My daughter, who was seven at the time, reminded me recently, when I was putting my thoughts together for this, that in his last weeks she had visited him, and I had taken her into a side room and told her not to expect to see the grandpa that she knew, because he was very, very ill and he did not look anything like she would expect. She said she was very thankful that I did that, because she was stunned and shocked when she saw him. He was like a 1,000-year-old corpse, he was moving, and his eyes were yellow, and that is how she remembers him—she does not remember any of the good times. My sister, who lived close by, was with him most of the time, and she just sat by his bed and prayed for his heart to stop.
We were all shell-shocked when he did finally die. As I say, that informed the decisions that were made about suicide by my sister and brother. Had he been a farm animal, we would have been prosecuted for causing unnecessary suffering, but he was a man so he was not entitled to that sort of consideration. I remember him in that horrible ward breathing his last. The only time he moved in the last days was to cough up blood. For a man who had asked to be relieved of that burden, who had asked for an act of mercy, a week before, and it had been denied him—I cannot understand how anybody would deny a dying man a deliverance.
When my brother died, he and my sister-in-law had been together since they were 11 years old. He was only 53, so they had already known each other for 40 years. She had shared his suffering while he was being driven around the country looking for diagnoses and, ultimately, looking for doctors who would help him commit suicide. His weight had gone from 18 stone to 8 stone, and he was bright yellow as well. He was suffering all the time and she was suffering with him. She was relieved as well as grieving when he actually died—and then the police were at the door. The investigation went on until his inquest eight months later. The police were as helpful and sensitive as they could possibly be. Vicky got the impression that they wanted her to give the wrong answer—when they said, “Did you know what he was going to do?” she said, “Yes, I did”; to “Could you have stopped him?” she said, “Yes, he was weak as a kitten”; and to “Could you have resuscitated him?” she said “Yes,” because she had had some nursing training, and so on—and with every answer they just collapsed a little bit more.
Ultimately, at the inquest there was an anomaly in his suicide note. It was written in two different colours of ink, and the police investigated whether it could have been written at different times, possibly by different people. Giving evidence at his inquest, the police said that they thought his pen had run out—there was a squiggle at the top where it changed from black to blue—and they said that they were not proceeding with any idea that there had been positive involvement in his suicide.
I have a note of the transcript of what the coroner said, which reads: “I don’t want to make any more of this than I absolutely have to. I simply record therefore that Michael Malone took his own life. He did so quite deliberately and having made appropriate preparations, and so it’s not a case of my saying that he did so while the balance of his mind was disturbed, because it clearly was not. It was a decision that he took and I have every sympathy with that decision in so far as a coroner is allowed to say that.”
The police were very sympathetic. The coroner was very sympathetic. Danny Kruger is very sympathetic. But sympathy only goes so far, and I am glad that this Committee is now looking at exactly the people who matter first in this issue, who cannot be here to talk for themselves.
Liz Reed: In answer to the first point, about anything we would change or do differently, I think actually my brother’s case was dealt with really well and there were checks and balances along the whole way: “Does he meet the eligibility criteria?”—obviously—“but also, does he want to?” His wife was involved in the process with him, and he was checked constantly. A doctor administered for him, and he had met him already. He knew him and had a rapport with him. He had a few jokes with him at the end. So from that perspective, I do not think so. It is slightly different in Australia, in that it does not have to have a High Court judge, so the process feels a bit more streamlined than it is here, and maybe the access would be slightly different because of that.
In terms of the grief, I think anyone that knows someone who has been through a terminal illness knows that there is a level of anticipatory grief that comes with that—the waking up every morning thinking, “Has it been tonight? What happens next? What’s today?” Because when someone is in the final stages of their life, which my brother was, there is always something every day: “Oh, he’s got to have fluid drained from his heart today,” or, “Oh, this has happened.” There is always something, so that grief starts coming on before the person has even died.
The day my brother died we sat outside in the courtyard and had a glass of champagne. He chose a Bob Dylan song that he wanted to die to. It was extremely peaceful. It was seconds. And he got to say all the things, have all the conversations, speak to our parents—that sort of real American “closure”. That is what he got, and we were not sitting around thinking, “I wish I’d said this. I missed it,” or, “I was off doing something with the kids.” We were all there: my mum, my dad, me, his wife. We sat there and held his hand—and what a gift.
Sarah Olney (Richmond Park) (LD)
Q
Liz Reed: I do not think so, no. I do not think it would have changed his mind. I am someone who is real squeamish, so I probably would not want to, because of how I feel about all that kind of stuff, but it would not have changed anything for him—no, absolutely not. But I think there is a comfort in having a doctor there administering that, “This is going to go as it should,” and there is a calm that comes with that.
Julie Thienpont: Guy being intensely private, as I mentioned before, he would have preferred less people around him at the time. There were two nurses, the family doctor and the administering doctor. They prepared the scene and put the drips in—they had to put one in each arm—and they had to be there in order to witness the whole thing. He would have preferred to have been able to do it himself, but I do not think the fact that it was administered by somebody else impacted in a negative way for him.
The Chair
Pat, I think you wanted to say something.
Pat Malone: Yes. My sister died under the Swiss method, which meant self-administering a cup. She had motor neurone disease, and she was slowly losing the use of her limbs. She went earlier than she needed to because she wanted to be sure that she would be able to swallow and lift her arm. She could probably have put it off for some months—an indeterminate period—but she died before she needed to in order to be sure that she could self-administer.
Sarah Olney
Q
Pat Malone: I cannot speak for her, but there were many, many problems. Bizarrely, the last package of documents that she sent to Dignitas got caught up in the postal strike, and they were all irreplaceable original documents. I do not know if you remember, but around that time—this was the winter of 2022-23—there was a postal strike, and it particularly affected international mail. For nine weeks, the documents were held up in a sorting office, and they could not find them. She was getting more and more concerned, because her horror was that she would miss that deadline. In actual fact, Dignitas agreed that in the final analysis she could hand carry the last of the documents she needed when she came to Switzerland, and she was still able, but her horror when she thought she was going to miss the bus was quite palpable. Yes, if a doctor had been able to do it, she might well have chosen that option.
Dr Opher
Q
Pat Malone: As I mentioned to Mr Kruger, I am loath to meddle in any way with the Bill. I think that as it is the Bill is the best we can do at this time.
The Chair
Order. I am going to let you continue, but that question is out of scope. Is there anything else you want to say, Mr Malone?
Pat Malone: I have said that as far as meddling with the Bill is concerned, I would like to see it pass as it is without too much delay.
Lewis Atkinson
Q
Pat Malone: I think that both my sister and brother had more than adequate palliative care. My sister, particularly—she was taken under the wing of the Macmillan nurses, even though she did not have cancer, and they were absolutely marvellous. Her GP was brilliant as well: behind her all the way for the whole year. She could not really have done it without her.
The NHS was excellent. In fact, my sister was used as a diagnostic tool, or diagnostic test, by NHS surgeons who were teaching medical students. She would be put in front of medical students and they would be asked what was wrong with her. Given that MND is normally associated with young men with brain trauma and so forth, it encouraged them to widen their appreciation of these diseases. It meant that she met NHS specialists at a particular level. She really wanted for nothing. She had a stairlift put in her house in short order. She had the mobility scooters and all the gimcracks that you have in your bathroom to help you get out of the bath and so forth. Above all, from the Macmillan nurses in Blyth, she had moral support. These are no-nonsense people who will walk through a wall if there is something that you need, and that is wonderful to have.
So there was no palliative care issue with my sister. She never needed any pain control. She had everything she needed. It did not change her mind one bit. I would like to see palliative care divorced from the idea of assisted dying. What she needed was assistance to die. What my brother needed was assistance to die. Palliative care was a side issue. It obviously comes into it, but if you could look at assisted dying on its own, I think that would be useful.
The Chair
Are there any more questions?
Julie Thienpont: Would it be okay if I said something?
The Chair
Of course. Please do.
Julie Thienpont: This is hearsay, of course. I live in Guernsey now. It is a small island, so we know a lot of people. A lot of people know each other. I had something published in the Guernsey press fairly recently. A friend of mine had a relative in the local hospice, which is excellent—it is absolutely beautiful and the palliative care and the teams are second to none. However, her relative who was in there saw the newspaper and said, “Oh, my goodness! I wish this Bill would come to pass here. I wish it would have been in time for me.” He said, “I am getting excellent treatment, but I am sitting here waiting to die. My family are coming every day to watch me wait to die.” He lived for five more days and he actually expressed that even though his care was excellent, he really wanted to die sooner on his own terms.
Kit Malthouse
Q
Liz Reed: Rob’s experience was that this law only came in in Queensland in January 2023, post his diagnosis. But it was an issue that had been in the press; he knew it was coming in and from diagnosis he thought it was something he might consider, and so he approached his doctor with that.
In terms of my view on whether doctors should bring this up—we are coming from a position of privilege where we have access to media; he knew this was going on, and I am sure there will be plenty of people who do not know. I do not really know, to be honest, where I sit on that. For our family and for my brother, it was absolutely the right thing to do. I cannot really answer.
Pat Malone: Some regulation and some guidance would not go amiss. My sister had fantastic support from her GP. She did a lot of extra work to meet the requirements of Dignitas, and my brother had exactly the opposite. When he went to his GP, for a long time he was told, “Oh, it’s just indigestion. Try Gaviscon.” Even when he went to his GP, in the light of his understanding of my father’s death, to say, “I think I’ve got pancreatic cancer,” his GP said, “No, it’s not—it’s just indigestion,” and so forth. It would not have mattered; an early diagnosis would have made no difference at all. But the GP was not very helpful and did not want to get involved.
When my brother died, my sister-in-law called the GP and the GP called the police. Before my brother was cold, the investigation started. If there was some way you could say to doctors, “This is what you can do, and this is what you can’t do. If you do not want to get involved, leave it to somebody who does because there are plenty of people who will”, and if that could be quantified somehow by a code of conduct—perhaps among the doctors, rather than in the Bill—that would be very useful.
Kit Malthouse
Q
Julie Thienpont: No. He made up his mind long before he was even sick. He felt that his mother had quite a traumatic passing, and said that she expressed a view that, had it been an option, she would have taken it. He had said from then, “That is the way I want to die. I want to die that way. I don’t want to be lingering in a bed, whether I am in pain or not. I don’t want that to happen.” That may not be something that I would choose, but that was his absolute choice—I have no doubt whatsoever. He said that to the team who had been looking after him when he first broached the subject, and I think they first of all thought he was not terribly serious. Then, when they realised he was, he said, “It’s my life, it’s my death—I want to choose.” I think that is what it is all about: allowing people that option to choose.
Kim Leadbeater
Q
Prior to your personal experience, you might have had a different view or friends and family who had different views. For me, speaking to people who have had the experiences you have had, it becomes very clear that we have problems with the law as it stands, or the lack of the law as it stands. Would anybody like to share their own journey about that?
Pat Malone: From my standpoint, I did not give it a lot of thought until it started impacting on the family. But I understood exactly why my sister and my brother committed suicide. I would hope that this Bill could be enacted when my time comes.
Liz Reed: I had not given it a huge amount of thought; I am relatively young. I suppose if I was asked at the time I would have said, “Yes, sounds fine,” but I think I had also grossly misunderstood what it would mean for someone to go to Dignitas. There is a flippant comment that goes around—I can remember my dad saying it: “Oh, I’ll just go to Switzerland.” It is just not that easy. People I know and have met, like Pat, have had family members go to Dignitas, and it is actually a deeply traumatising experience. People’s lives are cut much shorter, they cannot enjoy their time and so on. I absolutely agree that I had not given it much thought.
I remember, on the day my brother died, getting back to where we were staying; I sat there and thought, “What would have happened to him?” I wrote to my MP, to say, “Hello, I am just wondering what would have happened, out of interest.” That is how I got involved. Had he been here, what would have happened to him and how long would he have had to limp on? You hear enough stories of people begging to die at the end of their lives, and I am really thankful that he did not have to.
The Chair
May I offer all three of you the collective condolences of everybody on the Committee? I thank you for your bravery in attending today and for speaking to us. Thank you very much.
Hon. Members
Hear, hear.
Examination of Witnesses
Dan Scorer, Professor Lewis, Dr Mulholland and Dr Price gave evidence.
The Chair
We will now hear oral evidence from Professor Emyr Lewis, emeritus professor at the department of law and criminology at Aberystwyth University; Dr Michael Mulholland, honorary secretary at the Royal College of General Practitioners; Dr Annabel Price, from the Royal College of Psychiatrists; and Dan Scorer, head of policy, public affairs, information and advice at Mencap. Could you please introduce yourselves, so that we know who you are before you start giving evidence?
Dan Scorer: Hi. I am Dan Scorer from Mencap, the learning disability charity. We work across England, Wales and Northern Ireland. We support 4,000 people with a learning disability with their care and support needs, as well as providing information and advice services across the three countries. We also campaign for better support for people with a learning disability, and their families, across health, social care, employment, social security and cost of living.
Dr Mulholland: Hi. I am Michael Mulholland. I am a GP in Buckinghamshire and the honorary secretary of the Royal College of General Practitioners, the professional membership body for general practitioners. We have 54,000 members across the UK.
Our current position as a college is that we oppose a change in the law regarding terminally ill adults; that was ratified by our council in 2020 when we last had a survey of the membership. Seeing that there were changes in the legislative landscape across the UK in 2023, our council asked for a group to be convened to look at where our college should be going. We created a committee that looked at that and created a list of principles, which I will be referring to in any evidence I give today. In our council, we are currently undergoing a review of what our position should be. We have a membership survey that is live at present, and we will be bringing that to our council in March this year to decide the college’s position.
Professor Lewis: Hello, I am Emyr Lewis. I am a lawyer from Aberystwyth University, and I am here to talk about the legal and constitutional aspects relating to Wales that arise from the Bill.
Dr Price: Good afternoon. My name is Dr Annabel Price. I am here representing the Royal College of Psychiatrists, a professional medical body responsible for supporting psychiatrists through their careers, from training through to retirement, and I represent 21,000 members.
I am an old-age liaison psychiatrist, working in a general hospital setting. I also provide psychiatry input to my local hospice, and I teach palliative care at the University of Cambridge. I have a research background in mental health at the end of life, and particularly mental capacity for terminally ill adults requesting assisted dying.
The Chair
Thank you. Liz Saville Roberts, Danny Kruger has kindly forfeited a question in order for you to have two, so I will call you first.
Liz Saville Roberts
Q
Professor Lewis, I am glad to say that the Committee appreciates that scrutiny is necessary for Wales-related aspects of this private Member’s Bill. What are the risks of insufficient scrutiny?
Professor Lewis: Because this is a private Member’s Bill, it will not have gone through the process, which a Government Bill would have done, of having discussion between Governments as to how this might be sorted out. That impacts on Wales. So it is really important to have a session that focuses, albeit briefly, on Wales. I am grateful to the Committee.
This is an England and Wales Bill because certain criminal offences are matters on which the Senedd in Cardiff cannot legislate, and that includes offences that relate to suicide. However, apart from that, the impact of the Bill on devolved matters, if it became law, would be substantial—on the health service in Wales, on social services in Wales and on Welsh society generally. It is important that you take account of that. Indeed, certain aspects of the Bill seem to me to require a legislative consent motion to respect the Sewel convention.
Liz Saville Roberts
Q
Professor Lewis: As I am sure you are aware, the Parliament here in London can legislate about anything at all—absolutely anything. However, where the power to legislate is given to the devolved legislatures, the Sewel convention states—in the Government of Wales Act, in section 176, I think—that the Parliament in London will
“not normally legislate with regard to devolved matters”.
That is what is said. Therefore, there are certain aspects of this Bill—I will give you brief detail on that—that, in my opinion, relate to devolved matters. The first is clause 32. This is a very broad clause that would give the Secretary of State very broad powers for the implementation of the Bill within the NHS, including within the NHS in Wales. It seems to me unarguable that that is a matter both on which the Welsh Government ought to be consulted and which would require legislative consent from the Senedd.
The second is a cluster of clauses that impose specific functions on Welsh Ministers and on the chief medical officer for Wales. They are clauses 31, 33 and 34. Once more, from a formal perspective, they seem to require a legislative consent motion, so it seems to me that some thought needs to be given as to how that might happen in the context of a private Member’s Bill.
Sarah Green
Q
Professor Lewis: A motion was put forward by Julie Morgan that was supported by three or four Members of the Senedd, which was broadly in support not of this specific Bill, but of the purpose of this Bill, and it was defeated, as you say, after a full debate on the Floor of the Senedd. Formally, legally and constitutionally, that is of no consequence, because it was not a legislative consent motion, and of course, as I said earlier, this Parliament is able to do what it likes. It could totally disregard that. Whether that would be a prudent or an appropriate thing to do, or even what one might describe as a constitutionally appropriate thing to do, is another matter.
I think it reinforces the point that there is a significance in making sure that scrutiny of the Bill has a Welsh focus. You might consider, for example, making different provision in Wales. How do you respect what was a democratic vote in the Senedd in Cardiff? Well, you might consider having different commencement provisions—I am not advocating this, it is just an example of what you might do. Commencement of the Bill in Wales might happen in a different way, on the assumption it was passed. You might put that in the hands of Welsh Ministers and the Senedd, just as an example.
The Minister of State, Ministry of Justice (Sarah Sackman)
Q
You have highlighted in particular the distinctions between health law, which is a devolved matter, and the law on suicide, which currently is not devolved. On the first page of your written evidence, you draw out clauses 32, 31, 33 and 34 in particular as issues that we should focus on in ironing out those legalities. Is there anything else you want to add to that that you think that we as a Government should focus on in our work consulting with the Senedd?
Professor Lewis: I think it is important that both Governments understand how the implementation of what will be a pretty radical change in the law will happen on the ground within the health service and among those who are responsible for delivering social services. I am thinking of issues such as adult safeguarding, which in Wales has its own specific law and is slightly different from the arrangements in England. There are those kinds of nuances between the two territories, and I think it would be prudent to focus on them.
I also think it is wise to bear in mind that Wales has certain statutory bodies whose interests might extend to the Bill. For example, there is the Older People’s Commissioner for Wales, in particular; there is the Future Generations Commissioner for Wales as well. I think it is important that there is some forum, some scope, for those people also to be involved in how this is shaped.
Sarah Olney
Q
“is not sufficient for the purposes of this Bill.”
Could you expand a little on that and, if you feel able, make some recommendations as to what you think could be sufficient?
Dr Price: Thank you. In answering this, I will also 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.
We also need to think about how that would work in practice. When we are thinking about capacity assessments, it is usually related to a treatment or a choice about a treatment or about somebody’s life—for example, changing residence. Psychiatrists and doctors and actually lots of professionals are very used to those sorts of decisions and have gathered a lot of knowledge, expertise and experience around it. This particular decision is something that in this country we do not have knowledge, expertise and experience in, and we therefore need to think about how that would look in practice.
As for advice to the Committee about what that might look like, I think that we need to gather what evidence we have—it is actually very thin—from other jurisdictions that think about capacity as part of this process. I am thinking about my PhD: I visited Oregon and talked to practitioners who were directly involved in these sorts of assessments. They described the process, but they are not using the Mental Capacity Act as their framework. They described a very interpersonal process, which relied on a relationship with the patient, and the better a patient was known, the more a gut feeling-type assessment was used. We need to think here about whether that would be a sufficient conversation to have.
One of the things that I have thought quite a lot about is how we can really understand the workings of a mental capacity assessment, and one of the best ways we can do that is to see who is not permitted to access assisted suicide because of a lack of capacity and what that assessment showed. We do not have data because the assessments for people who were not permitted to do it are not published; we cannot read them, so if this becomes legislation, one of the suggestions that I would have—it is supported by the Royal College of Psychiatrists—is to, with patients’ consent, record capacity assessments to see whether they meet the standard that is necessary. I think it is important to set out the standard necessary and the components needed to be confident about a mental capacity assessment. That will help with standards, but will also help with training, because this is new territory for psychiatry, for medicine, and to be able to think about consistency and reliability, training needs to actually see a transparency in capacity assessments.
Dr Tidball
Q
Dan Scorer: There are two key concerns I will touch on. One was covered just at the end of the last session, with the question about preliminary discussions, and that is certainly a key area that we have concern about, about how that initial conversation is initiated and structured. For us, that really leads into a conversation around rights to advocacy. It would be extremely concerning if people with a learning disability who were terminally ill were not fully prepared and supported for that discussion.
For us, this links into the experiences that we had during the pandemic, which were touched on in yesterday’s evidence session by Dr Griffiths and others. We had people with a learning disability who were being consulted by medical professionals about “do not resuscitate” or “do not treat” decisions, and they were not being properly prepared for or supported in those discussions. Indeed, in one of our own care services, we had someone we support who was called up by a GP and asked whether she would want the kiss of life. The GP was trying to explain it to her excessively and she said, “No, of course not. I would not want to be kissed by someone I do not know.” Potentially, a “do not attempt CPR” notice was put in place. That example just shows the importance of preparing and supporting people for such discussions, so we want to see a right to advocacy included within the Bill to support people considering their end-of-life options.
Also, 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. That is a huge issue that has been addressed, for example, through the Oliver McGowan mandatory training on learning disability and autism, which is rolling out across the NHS and social care services at the moment. However, in addition to the MCA, we also need to make sure that clinicians fully understand the Equality Act and the NHS accessible information standard about rights to information and support for disabled patients.
On clause 5, on training, we want to see much more specificity about the level of training that clinicians would have around the Mental Capacity Act and to make sure that they are fully aware of their responsibilities to make reasonable adjustments for patients, and to support them with understanding their choices around end-of-life care, which could include assisted dying.
Sojan Joseph
Q
“Mental disorders, such as depression, are more common in people nearing the end of their life. Delirium is more common… Hopelessness is a common symptom of depression…And people’s capacity and consent can be affected when they are going through this condition.”
In the last few days, we have heard much evidence that expressed concern about capacity assessment and that said, as Dan mentioned, there should be an advocacy service available. Rather than having the current model of two doctors and the court, if we have a panel with experts on it who can consider psychosocial assessment and capacity, would that make the Bill stronger, with more safeguarding being introduced to it?
Dr Mulholland: Sorry—can I check whether that was a question for me at the Royal College of GPs or a question for the Royal College of Psychiatrists, because I think that statement was in their evidence?
Sojan Joseph
The evidence is from the Royal College of Psychiatrists, but anybody can answer the question.
Dr Mulholland: As GPs, we feel that we need a stand-alone service to take people through this process for assisted dying. We do not feel that the GP is in a place to make an assessment of capacity for this process. That is beyond anything that any of us have ever trained in or understood, and it will need people who are trained in assessing capacity at that point. As GPs, we are very used to assessing whether somebody has the capacity to take a course of antibiotics or to be referred for something that we understand, but this is an issue that will require a much deeper level—the Royal College of Psychiatrists has probably thought more on that level about the next steps.
Dr Price: Yes; to refer back to the written evidence, if we think about people with palliative care needs towards the end of life—so the people who would qualify under this Bill—around 20% will have diagnosable depression, around 10% will have a wish to hasten death, and around 4% will have a more persistent wish to hasten death. Those wishes may not be expressed unless they are assessed for. One of the things that I would do in my clinical practice would be to look for treatable mental disorder in people who express a wish to hasten death.
I do not do that alone. You asked about a panel. When I am thinking about the needs of people who are nearing the end of life, and I work with people nearing the end of life most weeks of my working life, I work in a multidisciplinary team. My own small team comprises doctors, nurses and occupational therapists, but I work closely with social workers, the safeguarding lead, chaplains and all my medical and surgical colleagues to make good decisions about my patients in a biological, psychological and social way. Not all difficulties that are psychological can be fixed with a psychiatric intervention.
We would advocate as a college, and I would suggest as a clinician, that good decisions about our patients’ needs are made in a multidisciplinary way. That should be considered in the model of how to meet people’s needs in whatever way they present, but particularly for people who have difficulties and are suffering in a way that makes them feel that they do not want to continue living.
The Chair
In the interests of time, to allow everybody to ask their question, will Members indicate which of the panel members they would like to answer so that only one gives an answer? That allows everybody to get in.
Tom Gordon
Q
Dr Mulholland: That is something we have been thinking about carefully at the RCGP. Part of our normal discussion will often open it up for patients to lead discussions around their end of life. We see there could be potential restrictions for that clinical consultation with a gag order. We very much follow the opinion I heard from Dr Green from the British Medical Association earlier in the week. We go along with that.
We are very protective of our relationship as GPs, and want to give patients the options that they might want to choose for themselves. We are not usually pushing anyone to any decision, but supporting them through their end-of-life journey. We would want to protect that in whatever way, so we therefore feel that a service we can signpost to would be the most appropriate thing as the next step.
Dr Price: As a psychiatrist and as a representative of the psychiatric profession, it is noted in the Bill that mental disorder is a specific exclusion. It is very unlikely that a psychiatrist would suggest or bring up assisted dying in a conversation.
I think a concern allied to that is people with mental disorder who request assisted dying from their psychiatrist. It may be clear to all that they do not meet eligibility criteria for that, but it is not absolutely clear in the Bill, as it is written, to what extent a psychiatrist would have to comply with a wish for that person to progress to that first assessment. There is quite a lot involved in getting to that first official assessment, such as making a declaration and providing identification. A psychiatrist might therefore have to be involved to quite an extent in supporting that person to get there if that is their right and their wish, even though it may be clear to all that they do not meet eligibility criteria if that is the primary reason for their asking to end their life.
Jack Abbott
Q
Dr Price: If I take you to thinking about what an assessment of capacity would normally look like, if we think about clinical practice, a psychiatrist would normally get involved in an assessment of capacity if the decision maker was unclear about whether that person could make a decision. The psychiatrist’s role in that capacity assessment would be to look for the presence of mental disorder, and at whether mental disorder was likely to be impacting on that person’s decision making. They would advise the decision maker, and the decision maker would then have the clinical role of thinking about that information and assessing capacity with that in mind.
Psychiatrists sometimes assess capacity and make the determination, but it is usually about psychiatric intervention and issues that are within their area of clinical expertise, such as care and treatment, capacity assessment around the Mental Health Act 1983 and whether somebody is able to consent to their treatment. In the Bill, I am not absolutely clear whether the psychiatrist is considered to be a primary decision maker on whether somebody should be eligible based on capacity, or whether their role is to advise the decision maker, who would be the primary doctor or one of two doctors.
Should a psychiatrist be involved in every case? If there is a view that psychiatric disorders should be assessed for, and ideally diagnosed or ruled out, in every case, a psychiatrist might have a role. If they are seen as an expert support to the primary decision maker, that decision maker would need to decide whether a psychiatrist was needed in every case. We know from Oregon over the years that psychiatrists were involved very frequently at the beginning of the process, and now they are involved by request in around 3% of completed assisted dying cases. We do not have data on what the involvement is across all requests.
Dr Opher
Q
Dr Mulholland: As GPs, we can assess capacity. In this situation, the college’s position would be that we feel the GP should not be part of the assisted dying service, so we would see a standalone service that we can signpost our patients to. The GP role may go on to a different route afterwards, and it may be part of other things with palliative care and looking after the families. We think that some GPs may want to be involved and take that step, but we know from our membership surveys that we have had at least 40% of members in the past who would absolutely not want to have any part in that.
Similar to other services, such as termination of pregnancy, we think that the best option would probably be that the GP could signpost to an information service, such as something like what the BMA suggested the other day. They would not have to do anything more than that, and they would not withhold any option from the patient. We could discuss that these things exist, but we would not be doing that capacity assessment. Obviously, to give patients information about what they are going to, as you know, we would assess their capacity to take that information in, retain it and do the right thing with it for them. We would be doing that level of capacity assessment, but not further on in the process, where you are assessing whether a patient is able to make a final decision. I think Chris Whitty referred to the various levels of capacity. As the decision gets more difficult and complex, you want a greater understanding with the patient that they really know the implications of what is going on, and we just would not be doing that in general practice.
Daniel Francis
Q
Dan Scorer: The Mental Capacity Act starts from the principle of presuming capacity. The question would be whether, when someone who is terminally ill puts themselves forward for assisted dying, doubts start to emerge about whether they actually have the ability to make that decision in terms of whether they can understand, retain or weigh the information and communicate their intentions.
As I mentioned earlier, our concern is how those discussions around assisted dying are initiated. For many people with a learning disability who are terminally ill and in an incredibly vulnerable position, doctors are very important and influential figures. Having a doctor come to you and say, “What do you think about assisted dying—is that something you might want to consider?” could move them towards or into potentially accepting a course of action that they had never considered before.
That is why I was saying that it is about having advocacy support around that discussion and, as you were saying, about the role of families. Individuals should be able to choose who supports them with those discussions, whether it is friends or family members or an independent advocate—that would probably be our preference—who is specifically trained to support people with a learning disability who are considering their end-of-life options.
There is a lot that could be done in addition to what is in the Bill already to potentially much better support people who are considering end-of-life options and to have other professionals who could input into multidisciplinary discussions, potentially around capacity assessment.
Kim Leadbeater
Q
My question relates to point 15 in your written evidence, around the Human Tissue Authority. This is a model I looked at in terms of the decision making on coercion and capacity around people involved in organ donation. Can you tell me a little about that, and whether you think that there are parallels? It is a very serious decision, so we are in that territory. This is about what that looks like and what the role of psychiatrists is. We have talked a little about this already, but if we were to take this multidisciplinary approach, which I think is really powerful, what should the role of psychiatrists be?
Dr Price: On the role of an oversight group, one of the risks with individual practitioners doing these sorts of assessments is that they may do it once or twice in their career. What we know is likely to happen is that a smaller number of practitioners will do lots of assessments and build up individual expertise. However, it might be that a particular practitioner does this only for a patient who they know, or only a few times. Therefore, in terms of building up through repetition the sort of expertise that somebody such as me might have in the mental healthcare of an older person—thousands of patients over a couple of decades—an external group that understands the standards and the process should be able to scrutinise things at the time.
There are a number of bodies that do that not just for organ donation, but across lots of different services. We have them for liaison psychiatry, and they might have them for electroconvulsive therapy services, for example. They are not extraordinary or unusual, but they ensure that there is some consistency and reliability and that the assessments are of a standard. Scrutinising assessments after somebody has completed the process is useful for everybody who comes afterwards; it may not ensure that the quality was there for that individual. That would be the rationale for that sort of approach. Forgive me, but would you ask me the second part of your question again?
Kim Leadbeater
Q
Dr Price: I do not have lots of individual experience with that group, because I do not work within a specific service. But it is an example of a model that is in operation, and hopefully I have described the sorts of characteristics and why they are there.
Dr Shastri-Hurst
Q
Dr Mulholland: We are aware that we have a range of views in RCGP across general practitioners. Some of them have very strong views for or against based on moral grounds, and some of those are based on religious grounds—traditional conscientious objection grounds. But others do not want to take part in assisted dying just because they do not want to; they do not feel it is part of what being a GP is, or part of what they trained for.
In discussion with colleagues today, someone shared with me that for 35 years they have spent their time trying to extend the life of patients—that has been our role—and to help them towards the end of life. It is a philosophical change if they start to think about whether the patient’s life should end earlier. There are some colleagues who may decide that for those reasons, they do not want to take part in this. There will be others who very definitely do. We have that range, so we feel that a doctor or a health professional should have the right not to take part on any ground, and that should be protected—they should not feel the obligation to do something that they do not feel is within their wishes.
Naz Shah
Q
Dr Price: There is a lot of research evidence around depression in people with palliative care needs and people nearing the end of life. We know that depression is common, and across a number of studies it is at around 20%—much more common than in the general population. We know that depression is strongly associated with a wish to hasten death, and that if depression is found and treated in that group of patients, there will be significant change in the wish to hasten death.
There are a number of associations other than depression with a wish to hasten death, and they include difficult symptom experience, poor functional status—needing a lot of help with things—and being socially isolated. Those are really key ones. They also include a sense of loss of dignity and feeling like a burden on others. These things can all come together to make life feel very unbearable. We know that there is also an overlap between a wish to hasten death, which is a response to suffering, and feeling that one is better off dead, ending one’s own life or harming oneself. I was involved in a study where we asked people both the wording of “a wish to hasten death” and the suicide question from the PHQ9, which is a depression screening tool. Those who had a wish to hasten death were 18 times more likely to also feel suicidal, according to the psychiatric definition, than people who did not have a wish to hasten death. There is a strong association.
Lewis Atkinson
Q
“the more serious the decision, the greater the level of capacity”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 30, Q3.]
and that it is used in tens, if not hundreds, of life and death cases in the NHS every week. The example he gave was someone refusing blood products that they would need to continue their life. In the light of that, I suppose I am a bit confused about your evidence saying that the MCA is not suitable for life or death decisions of this type. Do you think the MCA is not fit for purpose for those current life or death decisions that are being made, or is there something about the life or death decisions that would be made in an assisted dying context that makes that different?
Dr Price: The assumption that the Mental Capacity Act can translate neatly into this specific decision without a really clear sense of what that would look like in clinical practice is something that needs more careful thought.
I was involved in research in this area, and one of the things that I did was to scrutinise the concept of capacity as discussed in a number of forums—for example, the Commission on Assisted Dying, discussions in the House of Lords, and also interviews with doctors in England and Wales and in Oregon. There is a broad sense of what capacity is. For some, it is a very tight, cognitive definition that would mean that in practice, in assisted dying, most people would be found to be capacitous. Those who advocate a much broader sense of what capacity is—these can be contained within the framework of the Mental Capacity Act—would advocate a much broader sense of what that is, thinking about values and the person’s life experience and making more judgments, really, about that person’s life in a general sense.
What I do not think we have really pinned down is what concept of capacity is operating in the thoughts behind this Bill. Is it enough to say that we will essentially refer to the Mental Capacity Act, or do we need to be more specific about what is capacity for this decision? Is it sufficient to say, “We will refer out”, or do we need it on the face of the Bill so that anybody assessing capacity for this decision knows exactly what they should be doing and exactly how they should be having that conversation? Even though you may be operating within a legal framework, I think that the actual conversation —the actual content—will vary across practitioners. Is that good enough? Is that sufficient? Is that a good enough standard? When I do a capacity assessment, I have in mind that it may be appealed against—that is somebody’s right—and it should be available for scrutiny by a court. Essentially, that is the standard we are looking for, so it needs to be clear where the standard lies.
Kit Malthouse
Q
You talked about a percentage who wish to hasten death. The people we are talking about are facing death in any event within a foreseeable period, and they may be contemplating a death that is not pleasant. Some of the characteristics you talked about are presumably to be expected and may not necessarily interfere with their ability to make rational decisions in what they believe is their own best interest. In those circumstances, I do not understand why the Mental Capacity Act would not apply. I understand that you may be coming at it from a practitioner point of view, but if I make a decision to decline treatment to hasten my own death, I am not sure I would necessarily see that as qualitatively different, from the point of view of my own capacity, from saying, “I know I am going to die in three months’ time and I would like you to assist me to die slightly earlier.” Why are the two qualitatively different, from an MCA point of view? At the moment, one would be dealt with through the MCA, but you are saying the second would not necessarily be.
Dr Price: You are equating a refusal of treatment, in capacity terms, to hastening death by assisted dying. If those two things are equated, in terms of the gravity and the quality of the decision, the Mental Capacity Act may well be sufficient, but there are differences. There are differences in the information that the person would need and what they would need to understand. They 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—all of those things.
The informed consent process is different from a refusal of treatment, and the informed consent process feeds into the capacity assessment. This is an area where we need to think carefully about whether the processes of the Mental Capacity Act, as it stands, map neatly enough on to that decision to make it workable.
Rachel Hopkins
Q
Dr Mulholland: The shape of the service is not set out in the Bill. We would say that GPs need to have a space where they can step away from it: that is the key point that we want to get across. For those who want to take part, it may be that they decide to do it, but it would have to sit outside the core general medical services that we provide at the moment. This is an additional thing; this is not part of our core job. We think that a separate service—it may not just be GPs; there may be lots of different practitioners and health professionals involved —would sit better with that. You could then assess the capacity and assess those other parts that are so important and are in the Bill at the later stages.
The GP may have a role, but that would be very much up to the individual GP to decide. It would not be set out that they should be taking part. They would then probably be part of this additional service to which the others who are not taking part could signpost. We just want to make sure that there is that clear space.
Danny Kruger
Q
Dr Mulholland: Fortunately, that is not the RCGP’s bit, but I think we would be very much concerned. In our principles, we were clear that we thought that there should be no reduction in core services in general practice, nor should there be any reduction, if the Bill goes through, in funding to palliative care services, which we know are often struggling as well. This should therefore be additionally funded. Whether it occurs in the NHS is not our decision, but we would be very concerned about health inequalities creeping into any part of the health service. We are aware of the differential that occurs in lots of things—life expectancy has come out again in recent reports between different parts of the country and people who live with different levels of poverty. If the Bill comes through, we will want to make sure that there is not a differential in who is able to access it. Whether that says that it should be NHS or private I am not sure, but that needs to be considered as part of whatever comes out of this.
Dr Opher
Q
Dr Mulholland: We see a lot of people with mood disorders of different types and of different severities. Many people with depression who are treated with antidepressants carry out full-functioning jobs and lives because of the treatment that they have and because their depression is not of that severity. If someone had very severe depression and we were accessing our psychiatric colleagues, that would be a different decision, and perhaps it is not something that would happen at that point. Most people with depression, anxiety and other mental health problems would have capacity, because we would presume it under the Mental Capacity Act, so it is not necessarily an obstruction to people being referred for anything.
Kim Leadbeater
Q
On capacity, just to reflect on the previous panel, my view is that psychiatric assessment would not be necessary in every case. We have heard from three families this afternoon; we can probably all agree that there was a clear wish from those individuals that this was the choice they wanted to make. I agree with the colleague who said that there will be a percentage of people; that is why I think referral to a psychiatrist is important in those cases. Have you any more thoughts on that, Dr Mulholland?
Dr Mulholland: As GPs, yes, holistic care is what we do—whole-person, biopsychosocial care. If we got into an end-of-life discussion with a patient and they expressed a wish to go through a route of assisted dying, should that be legal, that might still be part of a discussion that we would have with them. It is the active part of the process. The BMA referred to the word “refer”—referring to a colleague, for those who did not want to do it. We agree that signposting is a better process.
We would not want to be out of the patient’s life. It is very difficult to be out of a patient’s life, but it may be that we are not part of that particular aspect of their care. It is the same when we refer to surgeons and hospitals; they have an episode of care elsewhere. This would be another episode that someone might be undertaking for that person. We will still have the families that we are part of; we will still be caring for them as well. We do not see them leaving general practice or general practitioners, but the assisted dying part of their health journey, or death journey, would perhaps be outside some people’s experience or expertise. You would need experts and people trained in it to be doing it, and not necessarily every GP.
Dr Price: No matter what somebody’s reason is for entering the process or what the outcome is, we are very clear that anybody should be able to access really good evidence-based care so that this should not in any way derail, deflect or make people not think about really good care. People should get really thorough assessments, have the right professionals involved in their care and have treatment where they need it and would benefit from it. All the quality that we have and all the guidelines that we work to should still be adhered to. We should still be providing all of the other good-quality care that we can. It is important not to bypass that and not to take shortcuts because they have made that decision.
The Chair
There are three people left who want to ask questions, so can I beg for brevity?
Naz Shah
Q
“The very act of raising assisted dying in that way will make that vulnerable patient think, ‘God, is this doctor telling me that my life is not worth living any more?’”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 75, Q93.]
We heard from Dr Jamilla Hussain yesterday. She talked about mistrust of the NHS, particularly post-covid, where people had DNRs attached to them—disabled people and people of ethnic minority backgrounds in particular. Dan, are you concerned about the potential impact on people with learning disabilities?
Dan Scorer: Yes. One of the first things that I said earlier was about how the initiation of that first conversation is potentially an extremely risky and dangerous moment for people with a learning disability who are terminally ill. Your question is absolutely spot on, from the point of view that it could be highly suggestive and push people on a course that they may not want to go down. That is why I am suggesting that that initial conversation has to be incredibly well supported and structured.
There should, in our view, be an advocate who is supporting the person and preparing them for that discussion. Under the principles of the Mental Capacity Act 2005, the person should have accessible information in advance of that discussion so that they are fully informed about all their rights in terms of treatment options at end of life. That discussion with a clinician should not be taking place until the person has been able to consider that information and have support from an advocate, so when the conversation does happen the person is fully informed and has had time to think about what their wishes might be. That would reduce the risk, which is absolutely there, that people could take the initiation of that discussion as a statement, “This is what you should do.” We absolutely do not want people to be in that position. We want strong safeguards and support in place if the Bill becomes law.
Dr Tidball
Q
Dan Scorer: There are a couple of things that I would like to say in response. One is about clause 31, on guidance from chief medical officers. Immediately, I would say that people with a learning disability should be involved in the development of that guidance from chief medical officers. That guidance will be key to many of the issues that we have discussed.
Clause 35 is about the review of the Act. The lived experience of people is absolutely vital to that. The Bill says that it will be five years until we have that review. Our view is that that is far too long. If the Bill becomes law and if there are really serious issues and discrimination taking place against people, we will want to know that a lot earlier than in five years’ time, and we will want action to be taken. Our suggestion is that review should be earlier. We would want to see strong representation from patient groups across that, as well as from people who have been involved in the process, such as family members, advocates and clinicians, to make sure that if serious issues are being raised, they can be picked up early and addressed.
Lewis Atkinson
Q
Although it is not my area, I absolutely note the concerns and the discussion about respecting the democratic will of the Senedd in these matters. Would you suggest any potential avenues in the Bill to incorporate an element of positive affirmation by the Senedd, or its consent? What do you suggest we look at?
Professor Lewis: Formally, there is a need in any event for a legislative consent motion in relation to the specific bits I mentioned earlier, I have suggested one potential avenue, which is that the Senedd and Welsh Government take on responsibility for whether and when the Act commences in Wales. Another option might be to do a thorough “think once, think twice, think Wales” review to see to what extent other functions of the Secretary of State might be better exercised in Wales by the Welsh Ministers. That is a non-exhaustive list, but I hope it helps.
Naz Shah
Q
Dr Price: The evidence that we have from research—this is in populations who would fulfil the criteria in terms of terminal illness—is that the prevalence of depression is around 20%. That is across a number of populations. It is associated with a wish to hasten death. Depression might impact upon that person’s decision making; I am not saying that it absolutely would, but it might. Also, treatment might change their view. We know that there is a strong association, for example, between pain and a wish to hasten death. Unresolved physical symptoms make people want to die, and when that pain is better, people no longer feel that way.
That is borne out in my clinical practice. We will get urgent referrals to see somebody who wants to die and who they are very concerned about. Then the pain is under control: we see them that day or the next day and they say, “Do you know what? The pain’s better. I don’t feel like that any more.” When we think about symptoms, we need to think carefully about what is treatable and what is remediable. That may be about psychiatric interventions, but it is often about a biological, psychological and social approach.
The Chair
May I thank the panel for giving evidence today? We really appreciate your attendance.
Daniel Francis
On a point of order, Mrs Harris. Yesterday, we heard evidence about the impact of the Bill on different groups with protected characteristics, including age, disability, race and sexual orientation. We heard from the EHRC, an arm’s length body of the Government, that it strongly recommends that a full impact assessment, a human rights assessment and a delegated powers memorandum be undertaken before the Committee begins line-by-line scrutiny.
We have also heard from witnesses about the impact that the Bill will have on disabled people, from Disability Rights UK and others, on black and minority ethnic people, from Dr Jamilla Hussain, from LGBT people, from Baroness Falkner, and on those from a low-income background, from Sam Royston of Marie Curie. We heard from Dr Sarah Cox and Dr Jamilla Hussain that evidence from their work shows that this Bill has a higher probability of pushing minority groups further away from seeking healthcare, while inequality pre-exists. As observed through the pandemic and from available data, minority groups do not always trust that their interests will be best represented in institutions that would enable the facilitation of someone’s death, should this Bill become law.
I therefore believe that on the basis of that advice, so as not to inadvertently widen health inequalities through Bill, it is essential to have health impact assessments. I appreciate that an equality impact assessment will be produced for Report stage, it will not be available for detailed line-by-line scrutiny. When we agreed the timetable for line-by-line scrutiny last Tuesday, we were not aware that this assessment would be produced, given it was first reported to the House during the money resolution last Wednesday. There is a risk that there will be a bigger impact on people with protected characteristics, and this will not be understood fully until the Government have produced the equality impact assessment. As things stand, that means that we will move into line-by-line scrutiny of the Bill on 11 February without a full understanding from the assessment of the impact of the Bill.
I am therefore minded to request a short Adjournment of the Committee so that, as advised, we can receive the assessments before we progress to line-by-line scrutiny. Please will you advise me, Mrs Harris, how I could secure such a motion to adjourn the Committee until we are in receipt of the evidence, as advised by the witnesses yesterday?
Sarah Sackman
Further to that point of order, Mrs Harris. I want to clarify the Government’s position. As the Committee knows, the Government are neutral on the Bill, but once the Committee has concluded its work and prior to Report, we are committed to publishing the ECHR memorandum, a delegated powers memorandum, the economic impact assessment that was committed to during the money resolution debate, and an assessment of the equalities impact of the Bill. In terms of the timing, it is necessary that the impacts that are assessed be of the Bill as it is brought forward. If the Bill is liable to change via amendments proposed by members of this Committee, it is important that we know what it is that we are assessing the impact of. That is why the proposed timing is to publish the impact assessment at that stage. The point is that before Members of the House come to a vote on Report and Third Reading, they will all have before them the impact assessment in respect of equalities and all those other aspects of the Bill.
The Chair
I am going to proceed now. I thank the hon. Member for Bexleyheath and Crayford for notice of his point of order. I am sure that the Member in charge and the Government have heard his points. If he wishes to look at procedural options, he should consult the Clerks in the Public Bill Office.
That brings us to the end of today’s sitting. The Committee will meet at 9.25 am on Tuesday 11 February to begin line-by-line consideration.
Ordered, That further consideration be now adjourned. —(Bambos Charalambous.)