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Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateKit Malthouse
Main Page: Kit Malthouse (Conservative - North West Hampshire)Department Debates - View all Kit Malthouse's debates with the Ministry of Justice
(1 year, 8 months ago)
Commons ChamberWhen 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.
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.
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.
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—
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.
claimed to move the closure (Standing Order No. 36).
Question agreed to.
Question put accordingly, That the Bill be now read a Second time.
Terminally Ill Adults (End of Life) Bill (First sitting) Debate
Full Debate: Read Full DebateKit Malthouse
Main Page: Kit Malthouse (Conservative - North West Hampshire)Department Debates - View all Kit Malthouse's debates with the Ministry of Justice
(1 year, 6 months ago)
Public Bill CommitteesI 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.
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
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).
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—
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.
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.
Terminally Ill Adults (End of Life) Bill (Money) Debate
Full Debate: Read Full DebateKit Malthouse
Main Page: Kit Malthouse (Conservative - North West Hampshire)Department Debates - View all Kit Malthouse's debates with the Department of Health and Social Care
(1 year, 6 months ago)
Commons ChamberI 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.
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.
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.
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) Debate
Full Debate: Read Full DebateKit Malthouse
Main Page: Kit Malthouse (Conservative - North West Hampshire)Department Debates - View all Kit Malthouse's debates with the Ministry of Justice
(1 year, 6 months ago)
Public Bill Committees
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Terminally Ill Adults (End of Life) Bill (Third sitting) Debate
Full Debate: Read Full DebateKit Malthouse
Main Page: Kit Malthouse (Conservative - North West Hampshire)Department Debates - View all Kit Malthouse's debates with the Ministry of Justice
(1 year, 6 months ago)
Public Bill CommitteesQ
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.
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.
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.
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.
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.
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.
Terminally Ill Adults (End of Life) Bill (Fifth sitting) Debate
Full Debate: Read Full DebateKit Malthouse
Main Page: Kit Malthouse (Conservative - North West Hampshire)Department Debates - View all Kit Malthouse's debates with the Ministry of Justice
(1 year, 6 months ago)
Public Bill Committees
The Chair
Thank you. Some hon. Members have already indicated that they wish to ask questions; if others do so, the Clerk will take note and I will come to them.
Q
Professor Esmail: In all honesty, I had not thought about it like that. I cannot say—I do not have the expertise to know—whether it is deterrence. I think that coercion is something that we should be concerned about. My view is that at the moment we do not even know whether it occurs. Currently, what happens? For example, if someone chooses to go to Dignitas, we do not know whether they have been coerced to go or not. If someone chooses to withdraw life-supporting treatment, we do not know whether this happens or not. It is good that it is acknowledged, and it is good that we should try to put in place some safeguards so that we understand it, we monitor it and we have a sanction of some sort.
Richard Robinson: Safeguarding is a significant issue. I think that coercion is underplayed significantly in cases of abuse of older people. The abuse of older people is seen as a minority issue and—we as a charity would argue—that makes much of the difference. We deal with about 75,000 people annually, as I said, and about 2.6 million people are affected by abuse every year.
One of the biggest issues we face is the fact that we have no idea of the levels of training that healthcare professionals and the judiciary receive to understand and recognise coercion. That leaves us in a situation where medical professionals say that coercion in these circumstances is minimal, but people need to understand what coercion is and how to recognise the signs of it in the first place, especially bearing in mind that the vast majority of cases that we see take place in the home and by family, rather than by professionals.
The other point that I would make about coercion is that there is lots of talk about it being limited to victims of abuse. I would argue that what goes on behind closed doors is the big issue. How do we ensure that medical professionals can see what is going on behind closed doors and build up a relationship with that individual? As a charity, we deal with these people every day, and it is difficult enough for us to build up a relationship. A medical professional who sees them in isolation over a short period of time to make these decisions does not have that opportunity. There is an awful lot to do to ensure safeguarding and to put that kind of deterrent in place.
Q
Richard Robinson: We take calls from professionals all the time, and we give training all the time. Safeguarding older people requires specialist training—it is a specialist issue—and although it may not be a solution, it is certainly on the pathway. We would also like to see refresher training built in. Any kind of amendment that includes training—not just on the medical side, but for anyone involved in decision making, like the judiciary—would be a real step forward.
Are we asking one question each, Mr Dowd, or may I ask two if I am quick?
The Chair
We will now hear oral evidence from Dr Lewis Graham from the University of Cambridge; Baroness Kishwer Falkner, chair of the Equality and Human Rights Commission; Fazilet Hadi, who is head of policy for Disability Rights UK; and Lord Sumption, former justice of the Supreme Court. For this session we have until 4 pm. Will the witnesses please introduce themselves for the record?
Dr Graham: My name is Dr Lewis Graham. I am a fellow in law at Christ’s College, Cambridge. I work on human rights law and I have a particular interest in the European Court of Human Rights and the European convention on human rights. My take-home message today is that the provisions of the Bill would not, or are very unlikely to, breach the European convention on human rights.
Lord Sumption: My name is Jonathan Sumption. I was a justice of the Supreme Court between 2012 and 2018. I also wrote a substantial judgment in the Nicklinson case.
Baroness Falkner: I am Kishwer Falkner. I am the chair of the Equality and Human Rights Commission and have been a Member of the House of Lords since 2004.
Fazilet Hadi: Good afternoon, everyone. I am Fazilet Hadi. I am head of policy at Disability Rights UK, which is a disabled people’s led organisation, meaning that the majority of our trustees and staff—and myself—are disabled people.
Q
Lord Sumption: This is about clause 12, and my own view is that clause 12 is unnecessary and in some respects undesirable. I have seen the proposed amendment relating to a panel. That would resolve the problem of the shortage of capacity in the High Court; it would not, however, resolve the problem of the over-engineering of the procedural provisions of the Bill.
The Chair
Excuse me, Lord Sumption, but could you speak up? We are finding it difficult to hear at this end.
Lord Sumption: I am so sorry. The concern that I have about clause 12 in its current form is that it is not entirely clear what the judge is supposed to do. There are many things that he is entitled to do, but the real question is: is he there in order to ensure that the two doctors have done their job and that the ducks are all in a row, or is he there to form his own view on all of those matters, completely independently of those who have already given their certificates? If it is the latter, one is talking about quite a time-consuming process involving a lot of additional evidence. It seems to me that this is a protection that no other country, so far as I am aware, among those that have authorised one or other form of assisted dying has included. I think it confers a protection that is largely illusory and it is undoubtedly very time-consuming.
I also have a residual feeling, which you can fairly describe as a prejudice, that it involves the intervention of the state in an intensely personal and agonising process, which, to my instinctive mind, is inappropriate. I think that most of those things, apart from the capacity problem, would be equally true of the tribunal option.
Q
Lord Sumption: I am aware of them. Basically, they fall into two categories. There are those, like Spain, that have a process whereby a tribunal deals with the matter in advance—and, in fact, in the case of Spain in arrears as well—and there are those like the Netherlands, where it is a retrospective process. I have heard it said that a retrospective process is of no use. I am not sure I agree with that. I think there is a case for having a retrospective process to ensure that the practitioners are doing what they are supposed to be doing and that any objectionable tendencies are stamped out at an early stage.
It seems to me that if you are going to have the opinion of two doctors, which is almost universal as a requirement in these cases, I do not think that it is necessary to have a third layer, and in some respects it is undesirable. I appreciate that the House must have concluded that it was in favour of it, but my own view is that I am not.
The Minister of State, Ministry of Justice (Sarah Sackman)
Q
Lord Sumption: That is really the critical question when you ask yourself how useful this process is. Obviously, they will have the opinions of the two referee doctors—they will have their rather pro forma statements, and possibly statements they will make by way of expansion of those—but if they are going to add something of value in the way of safeguards, it seems to me that they have got to carry out an independent investigation of those same matters. That would involve getting, presumably, a third expert adviser and proactively seeking evidence about, for example, the patient’s state of mind. It seems to me that that is duplicative.
Obviously, there is no system that you cannot have a greater degree of assurance about, but I am struck by the fact that no other jurisdiction has felt it necessary to have a process as elaborate as this for the purpose of duplicating the expert views already required.
The Chair
Order. I think we can tease those issues out from our questions.
Dr Neerkin: My name is Jane Neerkin. I am a consultant in palliative care at UCH and the National Hospital for Neurology and Neurosurgery. I have been in palliative care for over 25 years, and I have also been in medical education as the training programme director for palliative medicine. I am pro assisted dying for terminally ill patients, although I have not actively campaigned for it. I am not here representing any organisation today, but to give a view and representation of my lived experience of working with terminally ill patients over the last 25 years.
Sam Royston: I am Sam Royston. I am the executive director for research and policy at Marie Curie. For those not aware, Marie Curie is an end-of-life care provider. We have hospices across the UK and deliver community nursing services to support people in their homes, and we also undertake research and policy work into issues affecting people’s end-of-life experience.
Q
Toby Porter: I would defer to a physician on this point; I am a non-clinical person.
Dr Hussain: For the people I have seen in my end-of-life care practice who want assisted dying and have been persistent with that, even when they have accessed specialist palliative care—I have seen them, and they are a small handful—the decision is not usually related to symptoms. It is related to control being really important. I am not personally, in principle, against assisted dying. I think it is quite distressing, when control is important, to feel that you do not have that.
The other side of it is people much closer to the end of life, and this comes to your point. Perhaps they have had a long trajectory and are in the last few weeks. The symptoms may not be as best controlled as they want them to be, or they are just fed up, and the family have also got to the stage where they are accepting of that. I do not think the Bill is actually fit for purpose, and there are many of those than those who are doing it for control purposes. The length of time that it would take to go through the Bill would mean that they would not be eligible.
Q
Dr Hussain: I think it is really complex, isn’t it? The very existence of the Bill affects everyone who needs end-of-life care. It opens a Pandora’s box of risk. For those people, absolutely—when I am a physician and I am in front of them, I think, “What is the best palliative care I can provide for them?” However, when I put my population health hat on, I think about how it could impact the whole community. As I said, I work predominantly with an ethnically diverse population. I have gone into those communities and I have spoken to them about this Bill. What they say overwhelmingly to me is, “We’re scared. We’re really fearful that this is going to result in a disproportionate impact on our community. We have seen that through covid and we’re so scared. We already don’t access your services. We’re really worried that we won’t want to access them any more, and we won’t want to access the hospitals.”
That is the conundrum. If I want to open it up for that quite small proportion of people towards the end of life, I risk that much bigger group. That is why the decision is very tricky for me, even as a frontline clinician who is not against assisted dying in principle.
Dr Neerkin: I would like to break it down, thinking about what a terminally ill person is within the Bill. You have heard from quite a lot of people, and sometimes it is very clearcut, such as for cancer patients who have quite a clear trajectory in those last few months of life. It is much clearer for them than, maybe, for somebody with a neurological condition. People with those neurodegenerative disorders can go on for a much longer period of time. When you can recognise that they are already in the last six months of life, invariably by that point they may well have lost capacity to make those decisions. They may well not have the physical ability to take the medication at that time.
That is when you get those potential discrepancies: when you are defining “terminally ill” and whether or not one size fits every disease process for patients. I think that is aside from how much pain they are suffering, and whether or not it is because they want to retain control, it is also about the speed with which people will need to receive assisted dying. When you are rapidly deteriorating from a cancer prognosis, it may be that the two or three-week delay between different doctors, and everybody assessing it, might be too long. We have already heard, over the past couple of days, that people invariably die before they get the chance to take the medication themselves. However, there are also people who have a slower decline, who can actually have that long period of time for reflection, and that is quite important. I am not sure if that approaches the answer to your question in a slightly different way to Dr Hussain’s answer.
Dr Opher
Q
Toby Porter: Can I take that? That is something we feel quite passionately about. People pointing out problems with palliative care in the UK is not a pro or anti position in this debate. It is a statement of fact. Clearly, extrapolating that through, an outcome in which someone chose an assisted death because of a real or imagined fear that they could not get pain relief or other symptom alleviation, or because their family would not get support through their illness, would clearly be a moral and practical disgrace for any country. I think that is why people who are passionate about palliative care would obviously be concerned, but I think they also would be very encouraged by the fact that everybody who spoke at the debate in November, without exception, expressed commitment for improved palliative care, irrespective of what they felt about the rights and wrongs of the motion that they were considering.
Dr Hussain: I do not think I have come across a palliative care physician who does not accept that not all symptoms can be managed, but there is a lot that we can do. In my experience and in that of a lot of my colleagues, this is a tiny proportion of patients. Usually there is stuff we can do. Often—in all those cases in my practice, I have admitted them to a hospice and they have had a holistic assessment. If needed, some of them have gone under carefully titrated sedation. There is a lot we can do. That does not mean that we do not need assisted dying. Like I say, there are patients I have come across who do need that.
The complexity here, though, is that making it available to those people that I would love to have it available for, because that is a good death for them, opens this risk to everyone. Like I say, ethnic minority communities are afraid that they are going to be targeted and they are saying that they will not access palliative care services. There are people who may want it because they feel coerced, even internally, because they feel like a burden, or due to social issues, especially those people who are structurally disadvantaged. That is what I find really difficult to weigh up. We cannot pretend that that is not going to happen. That is a much bigger proportion of the patients I see in Bradford.
Sam Royston: No matter how passionately they believe in assisted dying, no one I have ever spoken to has said they think that a good reason for choosing an assisted death is that people cannot access the care and support that they need at the end of life. Yet we know that that is the reality for far too many people at the moment. We know that about 90% of people who die need palliative care and it has been estimated that about one in four of them does not receive the care and support that they need. We know that many people are dying in emergency departments following unnecessary admissions to hospital, or dying in the back of an ambulance.
Beyond clinical support, we also know that there are many thousands of people for whom a terminal diagnosis means being pushed into poverty. We have just estimated that more than 100,000 people each year die while living in poverty. You are particularly likely to die in poverty if you are unfortunate enough to become terminally ill and are working age. In fact, you are much more likely to be in poverty if you are working age if you are terminally ill than if you are not.
Some of these problems are only going to grow in coming years. We project that over the coming 25 years, the need for palliative care is going to rise by about 25%. That is around 150,000 more people each year needing palliative care. And we have no plan—no plan at all—to address the scale of that challenge. This crisis in our health and social care system in the support we provide to dying people cannot be the reason for introducing assisted dying. We need to make sure that there is a plan to improve palliative care support for people at the end of life.
That is why we have proposed an additional clause to the Bill that would require an assessment of current availability, quality and distribution of health and care services for people at the end of life—something that, unbelievably, does not exist at the moment— quality standards for palliative and end-of-life care services; a national strategy for palliative care, which has not existed since 2008; a long-term sustainable funding strategy for palliative and end-of-care life care; and an approach to establishing NHS leadership for the delivery of that strategy. Those are the key things that we need to see to make sure that we have a palliative care system that is fit for the future.
Terminally Ill Adults (End of Life) Bill (Fourth sitting) Debate
Full Debate: Read Full DebateKit Malthouse
Main Page: Kit Malthouse (Conservative - North West Hampshire)Department Debates - View all Kit Malthouse's debates with the Department of Health and Social Care
(1 year, 6 months ago)
Public Bill Committees
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.
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.
Terminally Ill Adults (End of Life) Bill (Sixth sitting) Debate
Full Debate: Read Full DebateKit Malthouse
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(1 year, 6 months ago)
Public Bill CommitteesQ
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.
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.
Doctors?
Professor Blake: In Western Australia, which was the second jurisdiction to introduce voluntary assisted dying—
Terminally Ill Adults (End of Life) Bill (Seventh sitting) Debate
Full Debate: Read Full DebateKit Malthouse
Main Page: Kit Malthouse (Conservative - North West Hampshire)Department Debates - View all Kit Malthouse's debates with the Ministry of Justice
(1 year, 6 months ago)
Public Bill Committees
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.
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?
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.
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—
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.
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.
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.
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.
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.
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.
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.
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.
Terminally Ill Adults (End of Life) Bill (Eighth sitting) Debate
Full Debate: Read Full DebateKit Malthouse
Main Page: Kit Malthouse (Conservative - North West Hampshire)Department Debates - View all Kit Malthouse's debates with the Ministry of Justice
(1 year, 6 months ago)
Public Bill Committees
The Chair
It is important that everybody has got their point on the record, and that they have said and raised their concerns.
Further to those points of order, Ms McVey. First of all, it is worth saying that the amendments tabled by the Bill’s promoter, the hon. Member for Spen Valley, are in response to evidence that has been heard by this Committee—oral and written. Certainly the Bill Committees that I have been on have had repeated information coming in as the Bill has evolved. That is an actual process.
It is worth also pointing out to Members that the Bill Committee is not the end of the process, and written evidence that will arrive throughout will be pertinent on Report, when the whole House will have that information available. Then members of the Committee can lead the debate and reflect on information or written evidence that has emerged even after Committee stage, once the completed Bill from that process is seen. It is perfectly possible for this to evolve as we get to Report and Third Reading in the light of evidence that arrives. That is the normal process through which all legislation goes.
I have to confess that I am a little confused by the evidence to which my hon. Friend refers. Can he confirm that it is perfectly possible for me to be diagnosed with a terminal disease and make an advance directive, which may apply in three months’ time, that in those circumstances I would decline treatment and would wish to die at that point? The Mental Capacity Act is used to assess me in making that advance directive, having had my terminal diagnosis. If it is good for that decision, I struggle to understand why it would not be good for a similar decision to end my life in similar circumstances.
Dr Shastri-Hurst
As always, my right hon. Friend makes a very good point. The Mental Capacity Act allows for advance directives on a whole variety of choices, including withdrawal of treatment, decisions on care or financial elements, and decisions on having treatment as opposed to not having treatment. It creates that ability and it is deemed robust enough for those purposes. It must therefore follow that it is robust enough for the purposes of the Bill.
Terminally Ill Adults (End of Life) Bill (Ninth sitting) Debate
Full Debate: Read Full DebateKit Malthouse
Main Page: Kit Malthouse (Conservative - North West Hampshire)Department Debates - View all Kit Malthouse's debates with the Ministry of Justice
(1 year, 6 months ago)
Public Bill CommitteesI recognise that, and that the Bill makes a distinction in respect of euthanasia or physician-assisted suicide, which would be the doctor doing it to us. The Bill specifies that the drugs must be self-administered. I do not understand the logic of that distinction, but I recognise that there is an attempt to make the Bill more palatable and that the distinction has been preserved. Nevertheless, the Bill would enable a doctor to prescribe lethal drugs with the purpose of ending a life. That is an act that is performed: a person is prescribed drugs to end their life. Whether they take the pills or press the syringe themselves, the act has been performed, and the prescribed drugs kill the person.
My hon. Friend will recall the evidence from Professor Hoyano, who said she could not legally see the distinction between a doctor handing the pills to somebody to take themselves and the doctor pulling the plug out of the wall to turn off the ventilator or whatever machine might be keeping the person alive. Both of them are an act by a doctor at the request of the patient to foreshorten their death and avoid whatever they contemplate at the end.
I realise we are dealing with semantics here. We might have an irreconcilable difference about such an act, but I have to say that from the point of view of a patient—the person approaching their death—those two acts seem to be broadly the same. In both circumstances I am requesting that a doctor do something to hasten my death, because I do not wish to continue living in the circumstances presented to me.
My right hon. Friend articulates the point well. I do not think it is a semantic decision: there is a real distinction. The fact is that unplugging the ventilator leads to death, but what kills the patient is not the administration of any treatment or drugs that have been provided. The patient dies naturally, whereas the administration of drugs designed to kill them is a qualitatively different event. I agree that of course the ultimate effect is the same, but the act that is performed is qualitatively different, and indeed the intention of the doctor is different.
Forgive me, but surely the whole point of what we are trying to do here is to give people the opportunity to avoid the natural death that is presented to them. We hear again and again, and we heard it from the families who gave evidence, that people profoundly wished to avoid their natural end because it was going to be degrading, unpleasant and profoundly painful on every level. That is the whole purpose of the act. To say that we should avoid that issue seems to me to negate our whole reason for being here.
We are trying to avoid suffering, pain and bad deaths. We all share that view. Indeed, later amendments look explicitly at the purpose of an assisted death and the question of the avoidance of pain. I am simply making the important distinction between the decision to withdraw treatment and the decision to administer fatal drugs, which, as I say, are qualitatively different—different in principle and different in practice.
I know that my hon. Friend comes from a mental health background and has worked as a professional in this area. I absolutely agree that we need to strengthen the Bill, which is why I will support the amendment. I feel that we must strengthen it because the Secretary of State can make some interventions.
I want to clarify what the Royal College of Psychiatrists actually said, because I realise that the hon. Member is relying a lot on that evidence. In an exchange with me in their oral evidence, the doctor from the royal college said that if I were to equate the decision to refuse treatment with the decision to request a hastening of my death in extremis as qualitatively the same, and of the same seriousness and outcome, then the Mental Capacity Act may well be appropriate for the decision. The difference was information. We would be relying on the notion of informed consent, and therefore on the information that the person was being given about the consequences of that decision.
We will be debating later in Committee the information that is given to a person to form that decision, but I do not think it is quite the case that the psychiatrist said that it could not be or was not fit for purpose. Actually, they said that it may well be sufficient if we equate those two decisions—and many of us do.
I know the right hon. Member speaks with a huge amount of experience. I am very new to the subject, but I know that the evidence from the psychiatrist was very certain—not “may well be”. The language that they used, which I referred to earlier, was very clear that it is not a good standard. They said:
“We are in uncharted territory with respect to mental capacity, which is very much at the hub of the Bill”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 226, Q286.]
and there is an inequity in assessment using the Mental Capacity Act. There were other categorical statements made—there was no “maybe” in there. For me, a “maybe” does not cut it at this level; the test should be much higher in order to take the option of assisted death.
If the hon. Lady goes to column 277 of Hansard from that oral evidence session, Dr Price said:
“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.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 277, Q361.]
It is clear what Dr Price said. To be honest, the question was partly prompted as we had become a little confused, because the whole practice of psychiatry in the UK is founded on the Act at the moment. She seemed to be implying that somehow the entire practice of psychiatry in the UK was on unstable ground—and I do not think anybody is claiming that.
The Chair
That is all right. Nevertheless, I am minded to refer the matter to the Clerk of the House for his consideration. This is no reflection on either of the hon. Gentlemen, or indeed on the Committee, but there are issues here that I think the Clerk of the House perhaps needs to consider in the broader context.
The Chair
No, I am not taking any further points of order on the subject. I have made my judgment. If it is on a different matter—
I was just going to say that it is not unprecedented: it has happened before, in the Tobacco and Vapes Bill.
The hon. Lady might well be right. I totally take that point. I dare say it is people who are homeless. I think the question put was, “Should those who are homeless simply be able to ask for assisted dying?” People in this country say no. In Canada, asked the same question, a quarter of people say yes. The effect of the law has been to institute this principle of assisted dying being an acceptable choice under any circumstances, which is indeed, I am afraid, what happens.
I will end with a powerful quote from Fazilet Hadi, who spoke to us representing disabled people. She said:
“This Bill is not an abstract exercise; it will land in a society that is rife with inequality.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 185, Q242.]
She said that the society the Bill will land in is the thing that needs to change, not the Bill. She thinks we need to change our society before we do anything like introducing assisted dying. I agree.
I should start by recognising that my hon. Friend the Member for East Wiltshire, who is my constituency neighbour, has devoted much of his adult life to public service. He should know that I have always admired him for that, and particularly for his work with the vulnerable and underprivileged in prisons. As he knows, I have spent much of my time in politics working with a similar population, so, like him, I understand their particular vulnerabilities. However, I oppose his amendments, and I hope he will bear with me while I enumerate why.
I believe that there are some definitional problems with the amendments, as well as some quite serious moral and ethical problems, and they compound into a practical difficulty. The first definitional one is who exactly my hon. Friend means by “prisoners”. As he knows, not all prisoners are the same. Would he seek to deny assisted dying to prisoners on remand who have yet to be found guilty of a crime but are being held in advance of the criminal justice process? Would he deny assisted dying—which will be available to everybody else if the Bill passes—to people who are held in prison for not paying their council tax, for example, or for contempt of court? There is a variety of vulnerability in the criminal justice system, and prisoners are inside for different lengths of time and in different institutions. Quite a lot of white-collar criminals go to open prisons, for example. Would he seek to deny them?
To me, if my hon. Friend’s objective is to protect vulnerable prisoners, the definition that he is using is far too wide. There are many people who may well find themselves in extremis while they are in prison and are likely to be released at some point, after a short sentence or because of the nature of their sentence, who would therefore have their ability to access assisted dying foreshortened.
Similarly, when my hon. Friend speaks of homeless people and uses the definition in the Housing Act 1996, I think he actually means rough sleepers. The definition of homelessness that he referred to includes people who are staying with friends, people who are moving between homes and people who are likely to become homeless at some point in the future. It is a very wide definition, which covers a large number of people, some of whom would not necessarily be classified as vulnerable and may well be assessed as perfectly capable and have the capacity to make this decision. So my first point is that there is a definitional problem with the broad terms that my hon. Friend has chosen.
I accept those points. Nevertheless, the Bill itself has broad definitions and large exclusions—people who have more than a six-month prognosis, and so on. The Bill, I am afraid, operates in pretty broad brush strokes in order to try to defend large categories of people, so I think it is appropriate to exclude all people who are currently incarcerated—people who are in prison—whatever the reason or the length of their sentence, until they are released, and then they can start the process if they wish to and if they qualify.
On homelessness, yes, we should use the official definition of homelessness, which basically means “in precarious housing”. The purpose of the Bill is to enable people who have full autonomy to make a decision in their own best interest. I think it is legitimate to ask whether people who are living in insecure accommodation, whose lives are in flux, who are experiencing extreme precariousness in their lives, should meet the appropriate criteria for autonomy that we wish to set out.
I was about to come on to the fact that those questions would indeed be asked through the assessment that takes place. As my hon. Friend knows—we have had a long discussion about it—the Mental Capacity Act relies to a certain extent on context to assess capacity.
Turning to my hon. Friend’s point on prisoners, this may come as a surprise to him, but some people who are held on remand are found innocent and are released from prison. During their period on remand, which could be quite lengthy, they would be denied access to something they would not otherwise be denied access to.
My objection is not on the basis of criminality, innocence or guilt. I would not deny criminals this right because they are criminals. I would deny them what I regard as a dangerous opportunity because they are vulnerable. Whether guilty or not, whether they are on remand or not, they are in an equally precarious position and equally vulnerable, and that is why they should be excluded.
I understand my hon. Friend’s point, but we are talking about people who do not have much time. We have to remember throughout this debate that we are talking about people who have limited time; they have been diagnosed, and their prognosis is six months or less. In fact, the experience from overseas is that quite a lot of people come to assisted dying beyond six months. We are operating on the basis that suddenly everybody at six months decides they are going to apply for it. Quite a lot apply with just days or weeks to go; time is therefore important to them, and so it should be to us. I am concerned that the definitions interfere with that.
Secondly, there is a distinct moral issue about the denial of services, particularly medical services, to groups of individuals based on their circumstances. We do not currently do that. We do not deny medical services to prisoners because they are prisoners. We believe it is a sign of a civilised society that they access the same healthcare as everybody else through our national health service. The same is true of those homeless groups. That includes allowing them to make the kind of decisions that we have talked about in the previous debate: decisions about life-threatening surgery and about the continuation of their life. It is certainly the case, as my hon. Friend will know from his work in prisons, that a number of prisons have developed hospice facilities within the prison to deal with end-of-life issues. Indeed those that do not have hospice care work closely with NHS palliative care outside and very often bring in specialists to deal with end-of-life issues in the prison.
Rebecca Paul
Some incredibly important points have been made. I would like to give an example. Let us consider someone who is homeless. Perhaps they are staying with friends, as my right hon. Friend said. If they find themselves to be terminally ill, they may well face difficulties in accessing palliative care and getting the right treatments simply because they are homeless. This is about protecting that vulnerable group from choosing assisted dying simply because they are in a precarious and difficult situation and assisted dying seems like the best option in the light of lack of palliative care and their current circumstances. Would my right hon. Friend concede that that is what my hon. Friend the Member for East Wiltshire is trying to address?
I would certainly concede that; absolutely, I agree. The whole purpose of the safeguards in the Bill is to protect those who would be vulnerable, to ensure they have the capacity to make the decisions they want to make, and to ensure that they are making them for the right reasons. However, I think a lot of people would find it unfair and immoral that they were excluded not because of their own sense of themselves and their ability and capacity but simply because of their circumstances. As I am trying to point out, those who are homeless or prisoners in the widest definition of those words can find their circumstances changing quite significantly within the timeframe of six months. Given that they have only got six months under this Bill, we should not interfere with that and say, “Well, you are in; you are out.”
This may seem like a narrow example, but imagine that somebody diagnosed with a progressive disease were to commit a criminal act and end up going to prison, and during their time in prison, they reach the six-month period. Are they to be denied assisted dying if it is available to everybody else in the population? To me, that would not seem morally right, particularly given that we have a duty to deliver, and we do deliver, end-of-life services to them in the prison to help them cope with those circumstances. As my hon. Friend will know, there are charities which provide end-of-life care in prison as well.
In the circumstances my right hon. Friend is describing, the prisoner would be eligible for the compassionate release scheme.
That is what I hope would happen if it was necessary for the prisoner to be released in order to avail himself of opportunities on the outside. If he is terminally ill, that is what should happen.
I am very pleased my hon. Friend raised that issue, because I was about to come to the practical difficulties that this presents, for exactly that reason. As he rightly pointed out, for a large number of prisoners, subject to assessment of the safety of the public, if they contract a terminal disease in prison, as they reach the end of their life, they qualify for compassionate early release. Often, that is within weeks of their death—naturally, as one would expect. It is carefully reviewed by prison governors and, I think, has to be signed off by the Secretary of State, as a final control. The problem with denying them the services while they are in prison is that if they are eventually compassionately released, they may have only a matter of weeks or days to go through what will be quite an onerous process to avoid a horrible death.
I support the amendment for a number of reasons. I have a huge amount of experience of dealing with women, domestic violence and prisons. The first time I came to this House was to lobby the then Labour Home Secretary to reduce my mother’s tariff, because she served 14 years in prison. When my mother was in prison, I was left homeless, so I have experience of that as well. I have experience of, while I was homeless, attempting suicide on two occasions, and I ended up having my stomach pumped. I therefore speak with a reasonable amount of experience in dealing with this.
From a domestic violence point of view, which is why my mother killed an abusive partner, and having been a victim of domestic abuse, I also understand the vulnerabilities concerning women in particular—less so men, although I know the hon. Member for East Wiltshire has done a lot of work on that in his adult life. The majority of women who end up in prison—we have seen this from review of the courts, time and again—are victims of abuse, whether sexual, domestic or another kind. The majority of our women prisoners are in that position.
The suicide rate among the population in England and Wales is 11.4 per 100,000, but for prisoners, that goes up to 108 per 100,000, which is nearly 10 times as high. We also know from research that one third of female prisoners in England and Wales self-harm. We know from the Home Affairs Committee report in the last Parliament on health in the English prison system that standards of health deteriorated in recent years due to budget reduction, loss of prison officers, staff shortages and overcrowding. We know that the Government have had to bring forward early releases, because the prison system is not fit for purpose after the cutbacks of the last 14 years.
All this speaks to me of vulnerability. I hear the points that both the right hon. Member for North West Hampshire and the hon. Member for East Wiltshire have made that, in an ideal world, people should absolutely have equal access to healthcare, but the problem is that we are not in an ideal world. From my perspective, we have a prison system that has had to have emergency interventions since the Labour party came into government, because it is not fit for purpose.
From a healthcare perspective, going back to what Dr Jamilla said and the numerous bits of evidence we heard about health inequalities, I know from a place such as Bradford West that people from ethnic minority backgrounds have less trust in healthcare services. I know that we do not have equity in healthcare services. As a former NHS commissioner, I know that those health inequalities impact on quality of life and that it is a postcode lottery. I am thinking about New Hall women’s prison in Wakefield and Armley prison, which is near Bradford. I am not familiar with London prisons, but I imagine the vulnerability of the women at New Hall. This comes back to the conversation about capacity: by some definition, they might have capacity.
However, we also heard from eminent psychiatrists that when someone has a diagnosis, it impacts on their mental health. In this instance, we are talking about six months, which the right hon. Member for North West Hampshire referred to a number of times. In that six months, access to visitors might not come for another few weeks. A person might not even have a member of their family next to them when they get that diagnosis. They could well be innocent; they could well have been a victim of domestic violence and ended up in prison because they killed an abusive partner after years of abuse.
They could be in a number of situations, but the one thing I concur with is the amount of vulnerability here, in particular for women, which speaks to the issues of capacity and coercion. It speaks to all the things that we are debating here, which is why I support this amendment: it would protect those who are vulnerable. If there was a diagnosis, prison systems would kick in. If someone was given less than six months to live, they would invoke compassionate grounds to leave the prison system, but I would be really uncomfortable seeing anybody in prison being given the option without that comfort.
I cannot imagine being in the position of, say, my mum. I cannot imagine—I would not dare imagine; I do not think I could handle it—the idea of being taken away from my family and being incarcerated, rightfully or wrongfully, guilty or not guilty. I would be in a place, a system and an institution where, depending on which category of prison I was in, the institutional wraparound and the interventions are very different. It depends on the stage of the sentence that somebody is in. If they are in at stage 1 at a category A prison, there are much stricter rules and regulations. Imagine a person being faced with all that and finding out that they have six months to live. As the right hon. Member for North West Hampshire said, there is no guarantee that it is six months—more than 40% of those diagnoses do not turn out to be correct, and they could live longer. What would the impact be on that person? Could they make that decision? From a capacity point of view, I am not sure that that would exist.
The hon. Lady is feeling towards the point I was trying to make, perhaps slightly incoherently. The point is that in my view, whether or not those people have access to this service, it should be based on an assessment of them as themselves, including their mental capacity, particular characteristics and their settled will, just as it would be for everyone else under the Bill. The fact that they are, at that point, a prisoner impacts on the context in which their capacity is assessed, which must be the critical factor. Having a blanket ban on all prisoners, capable or otherwise, seems cruel, if I am honest.
We know that prisons have to assess capacity in difficult circumstances. There are prisoners who decide to decline food and water and starve themselves to death. They are assessed as having capacity, if that is not the case, and in certain circumstances they are force fed, if it is seen that they do not have the capacity to take that decision themselves. In fact, the reason why prisons have created hospices within prisons is to deal with exactly such end of life decisions.
If we are doing it for non-assisted dying, why would we deny people the choice and autonomy, having been assessed as capable of making the decision, to do it in prison? Worse than that, if we are going to release them on compassionate grounds, why would we give them a shorter period to access the service than anybody else?
I appreciate where the right hon. Member is coming from—I sincerely do. It comes back to the heart of the issue around capacity. We heard from the psychiatrist—her name escapes me, but she was on the right-hand side—that, where there is an increase of vulnerability, if somebody is told they would get pain relief, they would choose an alternative path. Those were similar words, and I will find the reference.
My point is that we do not have equal healthcare access in prison. We provide prisoners with healthcare, but it is in no way equitable. The health inequalities that exist outside prison are bad enough. Palliative care is not fit for purpose in our country—it is a postcode lottery. Depending on which prison someone goes to, that will determine what kind of access they have to palliative care. It is not a level playing field.
Yes, I think there should be a deprivation of that final act, because there are vulnerabilities with that prisoner while they are inside a prison. What they need is not an option of assisted death at that point. That speaks to the amendment that I tabled, which is about making sure that we do not have the conversation in the first four weeks in any case, because a diagnosis of terminal illness affects people’s mental capacity and mental health. We know that: we have heard it from the psychiatrists. It is common sense; it does not take a genius to work it out.
We know that people in prison have additional vulnerabilities. We are having a debate about the issue of capacity, which we have clearly not agreed on. A person-centred care package needs to be about supporting the person, removing vulnerabilities, giving autonomy, and offering choices around accessing palliative care and medication, so that they are in a much stronger position to make an informed choice.
I am grateful to the hon. Lady for allowing me to intervene again. Can she not see that by supporting the hon. Gentleman’s amendment she is basically defining all prisoners as de facto vulnerable? It is not the case. Although many are vulnerable, both my hon. Friend the Member for East Wiltshire and I have met a lot of criminals and prisoners in our time, and quite a lot of them are smart, capable people who made a stupid decision. They are not vulnerable; they deeply regret what they did and go on to live perfectly functional lives.
We should be applying to prisoners exactly the same criteria of assessment—around capacity, vulnerability and settled will—at the time they are diagnosed with a terminal disease as we do to everybody else, because if we are not going to differentiate among prisoners, in many ways we are dehumanising the entire population. We are saying, “You are all vulnerable—no question—and we are excluding you completely on that basis.” As the hon. Member for Harrogate and Knaresborough said, that is in many ways a fundamental denial of a basic human right.
The idea that it is the fundamental denial of a human right is not quite correct. We are talking about the denial of a provision in a Bill that has not come into law. It is a potential legal position; it is not necessarily a human right yet. If the Bill comes into force, at that point it becomes an option that could be denied. There are many prisoners. Prison serves many purposes, one of which is to reform. There will be many prisoners who go in there and get a degree in criminality because they are surrounded by other prisoners. There are people who make choices.
In the first four weeks we should not have the conversation around assisted death in any case. I have tabled an amendment to that effect and will speak to it when we come to it. In the meantime, a person has an added layer of pressure if they are in prison. It does not mean that everybody is necessarily vulnerable from a starting position. I agree that there may be prisoners who are not vulnerable, but there is an added pressure if somebody is homeless or in prison, not having family or security, that would no doubt compound their mental health. Whether that is a slight or a large impact is for somebody else to assess, but as it is I support the amendment.
Sojan Joseph
I want to contribute to this discussion based on my experience as a mental health nurse. I worked in mental health services for 22 years, including managing a medium secure forensic unit. I have worked with many homeless people and people who were detained under the Mental Health Act by the criminal justice system in those medium secure units and who had been involved in criminal activities.
With my experience, I can categorically say that that group of people is very vulnerable. As the hon. Member for East Wiltshire said, self-harming and suicidal tendencies are very high among that group. As part of the risk assessments that we carry out in the mental health system, one of the questions is whether they are homeless. That question is asked to identify that vulnerability.
These amendments bring up the importance of a psychosocial assessment, which was highlighted in many pieces of our oral evidence. If we are looking to bring more safeguards into this Bill, that is something we should consider to safeguard this group of people.
I want to make one more point about what the right hon. Member for North West Hampshire said: not all homeless people are homeless in the same way; some people choose to sleep rough. I am not clear whether, if somebody is sleeping rough and is diagnosed with a terminal illness, we are looking to bring them back into an NHS bed to assist them to die. I do not know whether there is a provision to identify how we would manage those sorts of situations.
I was not necessarily saying what the hon. Member said that I said—that all homeless people are the same. However, it is the case that, for rough sleepers in particular, a number of charities, such as St Mungo’s, have had to develop on-street palliative care services for the rough sleepers who sadly do contract terminal diseases or are reaching the end of their lives. Very often, part of that service is to try to encourage them to come into some kind of institutional environment, such as a hospital, where their healthcare can be better served. It is a particular difficulty with that group, and there is a high incidence of mental health problems among the street homeless—not homeless people generally, but the street homeless—but that, in my view, would be caught by the general assessment that takes place.
In fact, the hon. Member may be interested to know that there is quite a lot of on-street mental health assessment taking place for people. People who are living on the street develop all sorts of disorders—indeed, there are often people with quite significant mental health problems on the street—and they are dealt with as closely as possible to the front end.
Therefore, it would not be beyond the capability of the state to make assessments about individuals that are appropriate to the context. I am trying to stress the point that we need to see the person as an individual, as well as within their context. With a blanket ban on particular groups, the human right that I was referring to is denied—it denies them the right to be seen as an individual and assessed as an individual, which is what we do in every other service that we provide to them.
Sojan Joseph
I thank the right hon. Member for that intervention. To clarify, not all patients who are diagnosed as terminally ill are necessarily bedridden. They may be capable of carrying out their day-to-day activities as normal, even though they have been diagnosed with a terminal illness and have been given a prognosis of six months. They may still be walking around. Not everybody needs palliative care, in fact.
My question was: if somebody who is a rough sleeper is diagnosed with a terminal illness and they want help with assisted dying, will we make provision to bring them back into an NHS bed to facilitate their dying? It would be great to have that clarification. I support the amendment, as I have seen many highly vulnerable people who would be more likely to choose the path to end their life if they were given the option.
What an interesting debate—I am grateful to all hon. Members who participated.
I am interested in what the Minister was saying about the ECHR. Notwithstanding my general point about the sovereignty of Parliament, when Lord Sumption gave evidence to the Committee two weeks ago, he stressed the wide margin of appreciation given to member states on the ECHR. Does the Minister think that that will apply in this case to ensure that the British Parliament could vote to exclude these categories of people? If his view is that the Bill could be subject to challenges on discrimination grounds, however, particularly under article 14, I think we will have a lot of problems in applying the Bill. I wonder whether, in due course, we will be able to tease out how the ECHR will intersect with the Bill.
As the Minister says, the crucial point is that any discrimination must be justified on the basis of achieving a legitimate and proportionate aim. My suggestion is that there is an absolutely legitimate aim, and that this is a proportionate means of achieving it.
The debate got quite philosophical, which I found very interesting. I observe that my constituency neighbour, esteemed colleague and great Conservative, my right hon. Friend the Member for North West Hampshire, has a vision of our particular political creed that is entirely individualistic. He stresses the absolute importance of individual autonomy, treating everybody as an individual without reference to the context in which they live. I suggest to him, and to the Committee, that our freedom and autonomy depend on our relationships. Our autonomy proceeds from our socialisation. We do not emerge fully formed into the world with all our values and attributes; we acquire them by virtue of the people around us.
The crucial thing about the prison experience is that it disrupts the relationships that can make an individual genuinely free. Homelessness does likewise, and it sets up all sorts of new relationships and new socialisations that can often be very negative.
I am grateful for my hon. Friend’s kind words, but he will know that the foundation of our beliefs stretches from Magna Carta through to Mill and is based on a legal notion that I am to a certain extent my own island—that I have autonomy over myself. From habeas corpus to making decisions about my own medical treatment, I should have rights. That is not to say that my decision-making capacity should not be assessed within the context in which I live.
What I was trying to communicate to my hon. Friend and his supporters in respect of this amendment is that I think it profoundly wrong to paint all prisoners with the same brush and see them as a homogeneous whole, rather than seeing them for the individuals they are, specifically when they are taking a very individual, personal and private decision about their own life and death.
I trace our liberties to an evolution of British law, and of English law, that recognises the essential nature of our individuality as being socialised. We belong to one another and we derive our freedom from other people. Our autonomy, Magna Carta and all the liberties of the individual proceed from that. None of us, no man, is an island. That is what I suggest to my right hon. Friend. His point was about treating everybody as solitary individuals, making independent private decisions. That is not the way any of us operate; it is certainly not the way people in the most vulnerable circumstances operate. What actually happens is that we are heavily influenced by the people around us, by our circumstances and by the choices before us.
To descend from the abstract, let us consider an actual case, albeit a hypothetical one. Someone is in prison. They have committed some crime, or they have not committed a crime but have been remanded. Their whole family life has been smashed to pieces over the years, or just recently. They then get the terrible diagnosis of a terminal illness. A doctor says to them, because they are allowed to do so under the Bill, “You know, one of your options is an assisted death.” I think that that would be incredibly influential, to the point of serious concern, for those of us who know how vulnerable people in prison are. The same applies to people living on the streets, the people my right hon. Friend was describing.
I understand what the hon. Member for Broxtowe is trying to achieve, but I believe that her amendments are unnecessary. “Demonstrably” is a word that is commonly used in British law, effectively to emphasise that something is important, but also to ensure that something is proven. She will have seen that I have tabled amendments to the Bill to require two declarations to be produced: one by the patient, to say that they have had the conversation about all their options, understand their options and understand what their prognosis is likely to be; and one by the co-ordinating doctor, to say that they have had the conversation and that the patient is in full possession of all the facts they need and understands what has been communicated to them.
My view is that those declarations, as well as the assessment that the doctor has to go through to confirm that the person has a settled wish to do this, are enough to show that the person demonstrably wants to access the service for themselves. I am concerned that amendment 109, like other amendments that we will debate later, would insert into the Bill a series of individual words that will unnecessarily complicate its contemplation by doctors. We heard in evidence that for the Bill to work, it needs to be simple and understandable by everybody who is dealing with it. The more we can minimise the number of words that may be open to interpretation by lawyers —and we certainly have plenty of lawyers in the room— the better. From that point of view, I will oppose the amendment. I understand what the hon. Lady is trying to achieve, but I believe that we have achieved it by different means.
The amendments in the name of my hon. Friend the Member for Broxtowe relate to an individual who seeks to access assisted dying services demonstrating their wish to end their own life and demonstrating their understanding of the process by which that happens. To support the Committee’s deliberations, I will briefly summarise the Government’s analysis of the effect of the amendments.
Amendments 109, 110 and 111 would modify the requirement that the co-ordinating doctor and the independent doctor must undertake an assessment to ascertain whether, in their opinion, the person has a clear, settled and informed wish to end their own life. That would be amended to require the person to have a clear, settled and demonstrably informed wish. The term “demonstrably” would not provide further practical guidance beyond the words already in the Bill and could create uncertainty as to what constitutes being demonstrably informed.
I turn to amendment 112. Clause 9 currently provides that the co-ordinating and independent doctors must explain and discuss a number of matters with the person being assessed. These matters are set out in clause 9(2)(b), (c) and (d). In the interests of time, I will not go through each of those matters, but they include an explanation and discussion of the person’s diagnosis and prognosis, any treatment available and the likely effect of it, and the further steps that must be taken before assistance can lawfully be provided to the person under the Act.
The amendment would create an additional requirement for the co-ordinating and independent doctors. It would require them both to be satisfied that, in their opinion, the person seeking assistance has demonstrated their understanding of the matters that have been discussed under clause 9(2)(b), (c) and (d). The amendment does not specify in any further detail what the doctors would be required to look for to satisfy themselves that a person has demonstrated their understanding. That would be left to their professional judgment, with training, support and guidance, as with other concepts in the Bill. The amendment would leave it to the co-ordinating and independent doctor’s professional judgment to determine what “demonstrated their understanding” looked like in respect of each individual person.
I hope that those observations are helpful to the Committee.
I have just a few points to make. I very much applaud the hon. Member for Broxtowe for her amendment, which would genuinely—demonstrably, I might say—strengthen the Bill. It does not seem in any sense hostile to the principle or purpose of the Bill; it supports it.
To make a gentle criticism, I think that there is a concern about the lack, throughout the Bill, of a proper trail of documentary evidence following the applicant through the process. For example, the two conversations with the doctor would take place behind closed doors, and no record of their discussion would be made. I do not think that conducive to trust. There is no way to assess whether the safeguards are actually in operation.
I am afraid that that is not actually correct. If my hon. Friend is willing to look at my amendments—I appreciate that he might not have got to them yet—he will see that one of them would require the doctor to produce a report on their assessment of the patient. Obviously a two-way declaration would also be required that the conversation pursuant to clause 4(4) has taken place and that in the doctor’s view the person is in possession of all the facts that they need in order to make the judgment that we are asking them to make. That detail and documentation will be inserted into the Bill if my amendment is agreed to.
I am grateful to my right hon. Friend. I particularly applaud his amendment’s aspiration to ensure that the doctors’ conversations are properly recorded.
Terminally Ill Adults (End of Life) Bill (Tenth sitting) Debate
Full Debate: Read Full DebateKit Malthouse
Main Page: Kit Malthouse (Conservative - North West Hampshire)Department Debates - View all Kit Malthouse's debates with the Ministry of Justice
(1 year, 6 months ago)
Public Bill Committees
Rebecca Paul
My hon. Friend makes the point powerfully. I say to everyone in this Committee—we had this discussion yesterday—that I am not opposed in principle to the concept of assisted dying, but I see my role here as to protect the vulnerable. That is what I am trying to do, and I know everyone here wants to do exactly that. I cannot really see any downside to these amendments. Why would the Committee not want them included, if we want to protect the most vulnerable? Yes, it may put a bit more onus on clinicians, because they would need to look for a lower level of coercion. But that is absolutely right—of course they should have to do that. We are talking about assisted death. It is really important that we have a higher level of consideration.
I understand that much of the difference between us on this may founder on our perception of what is actually happening. She speaks of suicide, and to some of us—certainly to me—suicide is a healthy person taking their life, but what we are talking about is somebody who is seeking to take control of their inevitable death in these circumstances. For me, those two are qualitatively different.
I am concerned about my hon. Friend the Member for Reigate injecting an element of jeopardy into what should ordinarily be normal conversations with one’s family. For example, I could see a point at which, if I were in those circumstances and was thinking about seeking assistance to end my life, I would discuss that with my wife: “Darling, am I doing the right thing? Is it the best thing for the kids? I think I’m going to have a horrible death, and I’m trying to decide.” We heard from families—and have done over the last 10 years—who, very often in anguish support their loved one, even to the extent that they are willing to break the law. As my hon. Friend the Member for Harrogate and Knaresborough said, the line between support and encouragement is quite fine. If somebody were to come forward and say, “Well, I’ve spoken to my family. They all think I am doing the right thing”, could that not be interpreted as encouragement? I am conscious that we should not try to police what should be open and natural discussions between families in a way that injects jeopardy for them and the person to the extent that they might start to modify what they say to the doctor to ensure that they get the outcome they want.
My hon. Friend makes a valid point. There has already been a test case, and the Court of Appeal has ruled that undue influence is relevant to medical decisions and that doctors must look at it. If that is already a ruling, I struggle to understand the resistance to adding the words “undue influence” to a Bill that, in the promoter’s own words, should be the safest in the world. A judge has already ruled on it. We already know that we are not going to get to a judge. I struggle to understand this.
As the Minister pointed out, the concepts that the hon. Lady is trying to embed in the Bill are already covered by what is a settled legal interpretation and a framework that, over the last 10 years, has become used to dealing with those issues. Do not forget that families who are going through such situations will be advised and will examine the legislation quite carefully. I am nervous about injecting yet another level of consideration for them that might mean that conversations are interpreted—by them, but not necessarily in a legal sense—in a way that is not beneficial to the patient.
I understand the group that the hon. Lady is seeking to protect—that is what we are all trying to do. But what about the majority of people in such circumstances, who might say, for example, “Darling, I am thinking about taking an assisted death because of my horrible disease. If you were me, what would you do?” If I then say, “Well, painful though it is for me, I would do exactly the same thing,” how would families interpret that?
I also want to respond to the hon. Member for Bexleyheath and Crayford. He made a strong point, but I am not sure he is exactly right. I think that if at nine months I have a disease that is progressing, and somebody in my family says to me, “When it comes to it, Kit, you have absolutely got to take an assisted death. We really want you to,” and then when I get into the six-month period I do, and I tell the doctor, my interpretation is that would be covered under the Bill.
I think what the Minister was eloquently trying to establish was that we have to be careful about the clarity of the legal language, and not make it embroidered in a way that makes interpretation by laypeople as well as by lawyers more difficult and complicated. I will come on to this in the next grouping, but we must not use language in a way that skews behaviour, or that makes what should be healthy and fulsome discussions within families guarded and nervous.
I have to respectfully disagree with the right hon. Member that this is a settled position. I also challenge, on the record, what the Minister said. I struggle to understand how the Minister and the Government can say that this is a settled position without having gone to consultation on the Bill and without having an impact assessment. That does not satisfy me. My role when I agreed to be on the Committee was to come in to scrutinise and help strengthen the legislation. In doing so, these are the things that I am pointing out, because the safeguards are not strong enough for me.
I come back to the Court of Appeal. This would be a medical intervention, albeit to end somebody’s life. It would be administering a lethal drug to end somebody’s life, and it would be done by medics. Medics are involved in every stage. If there is case law that has already established that doctors have to look at undue influence in medical decisions, then I say to every single person on the Committee: what are we resisting? When the Court of Appeal has already said so, why is the Committee debating keeping this language out because it makes things complicated?
Let us go back to the words of Dr Jamilla Hussain, who gave evidence to the Committee. She is a clinician, and she absolutely accepts that there are some people who would really benefit from this law. As a clinician, she wants to get there. Indeed, I spoke to Professor John Wright, and he said, “Naz, absolutely—this is where we need to be.”
It is a pleasure to follow the hon. Lady. May I say how much I agree with what she has been saying and the purpose of her amendments, which I will be supporting if we get the chance, as I will the amendments in the name of my hon. Friend the Member for Reigate?
I do not want to repeat what I said yesterday, but my general point is that we make decisions in a context. We are directly influenced by the people around us. I want to highlight the very powerful phrase that my hon. Friend used. She said that love can shroud decision making, and the influence and pressure that is applied to us can be shrouded in love.
Professor House, who gave evidence to us, talked about the enmeshment of people’s decision making with the influence of their loved ones and people around them. The fact is—hon. Members have made this point—that power dynamics in families are complicated, and where there is an imbalance of power, there is risk. The Bill implicitly acknowledges that through the safeguards that it attempts to create, but I do not think they are strong enough.
I know that my right hon. Friend the Member for North West Hampshire is concerned that strengthening the Bill in this way will create an opposite risk, which is that a family member who was behaving perfectly properly could somehow be dragged into a prosecution, or that the application would be denied on the basis of a reasonable conversation that had taken place between loved ones—“My darling, do you think I should do this?” It is a lovely fictional conversation, a sweet exchange between a loving couple, but saying to somebody that you agree with the decision they have made and that you would support it, or that you are content with it or understand it, is not the same as undue influence—it is not even the same as encouragement. It is similar to the debate we will be having in due course about the role of the doctor making an overt suggestion of an assisted death, rather than consenting to a suggestion that has been made by the patient.
My hon. Friend is asserting that those two things are different, but obviously, those assertions would be tested in court. If a person were to appear in front of the co-ordinating doctor and say, “Doctor, I want an assisted death and my husband thinks I should do it,” is that interpreted as encouragement? Is it support? Under the current legal framework, that would be interpretable and inquirable. However, as I said to my hon. Friend, I am not necessarily nervous that families would be dragged into some kind of legal conflict. I am concerned that they would seek to not get there at all, because the insertion of those words would make them so nervous about the conversation that they would become guarded.
We know from other jurisdictions that over time, people will come to understand this process. As I will refer to during our debate on the next grouping, they will also start to understand what they should not say, if we put into the Bill that there are things that will play negatively if they are revealed to the relevant authorities. My concern is that unless we keep the Bill simple and clear, and leave families and medics the space to have free, frank and open conversations that—from the medical point of view—cover the full range of options, we will start to restrict and police the conversation, and therefore make it that much more difficult.
The risk of gaming—of patients playing the game, and doctors seeking out words to say or not say—is an issue throughout the Bill. That is a general problem with the Bill; thankfully, it is not just a free-for-all. However, in the scenario that my right hon. Friend suggests, that is exactly my concern: if the patient says that their spouse agrees with them or encourages them, that should be a red flag. Under the current Bill, it is not clear that it would be. There is no obligation on the doctor to record that there has been undue influence or to push back, because at the moment, the doctor is looking only for evidence of coercion. As I will come to later, that bar is too low to use, so if the doctor hears those words, I would like him or her to start asking questions, to push back, and to satisfy himself or herself that there has been no overt encouragement or undue influence. That is the point of what we are trying to do.
Terminally Ill Adults (End of Life) Bill (Eleventh sitting) Debate
Full Debate: Read Full DebateKit Malthouse
Main Page: Kit Malthouse (Conservative - North West Hampshire)Department Debates - View all Kit Malthouse's debates with the Ministry of Justice
(1 year, 6 months ago)
Public Bill CommitteesOkay. I am grateful to the hon. Gentleman for his intervention.
We have received significant written and oral evidence on how common it is, sadly, that vulnerable people experience this sort of subtle coercion—the undue influence from which we all want to ensure that people are protected. The lawyer Tamasin Perkins was referenced earlier, but not fully quoted. She is a private wealth disputes partner, so deals with a lot of complexities around people’s deaths. She has said:
“Coercion can be very difficult to spot as a legal professional (and for medical professionals too)…the real influence occurs behind closed doors.”
She went on to talk about
“frailty and vulnerability…a too close involvement in the decision-making process, or a sudden and inexplicable change of heart.”
All that is often teased out only through the course of the quite in-depth relationship that a lawyer can form in the course of supporting somebody to settle their financial affairs. That is not what is proposed in the Bill. The law firm Scott Bailey has made the point that
“sadly, we all too often speak to individuals who do not realise they are victims until they talk to us about their relationship”.
While the Bill correctly seeks to protect people from direct coercion, indirect coercion is much harder to spot, as is the coercion that people apply to themselves, which we will come to in the next group of amendments. I recognise that the Committee and the promoter of the Bill, the hon. Member for Spen Valley, have taken pains to ensure that we prevent coercion. I put on the record my support for the amendments in the name of the hon. Member for Lowestoft (Jess Asato) about the importance of providing training to all the professionals involved with coercive control, but I am not sure that training will be sufficient. It is important to insist that doctors who assess such applications are required to look directly for these particular forms of influence.
Let me explain our concerns as crisply as I can. At the moment, encouraging suicide will remain illegal under the Bill. That is an important principle. Clause 24 specifies that to assist someone to die according to the processes of the scheme set out in the Bill will not be treated as assisting suicide. The implication is that encouraging assisted suicide remains illegal. To the point made earlier by my right hon. Friend the Member for North West Hampshire, if we are worried that there might be a chilling effect due to the concept of encouragement still being illegal, logically the Committee should amend clause 24 to explicitly allow encouragement in order to prevent such a chilling effect. Either encouragement is okay, and we allow it as a concept, or we do not.
Forgive me, but I think my hon. Friend might have misunderstood me. My point was that the more we attempt to police discussions in families, the more guarded they will become; it was not necessarily that we should specifically authorise encouragement, or whatever he has suggested. He referred a moment ago to professionals being able to have conversations with individuals freely about their circumstances, their thinking, and how they had come to their decision. I am concerned—there are relevant amendments in the next grouping—that families will interpret these words in such a way that they start to talk about things they should not say. They might think, “I’ve got to be very careful not to do this or say that; because of the state of my body and the disease that is ravaging it, I am determined that I want an assisted death, and I am going to make sure that I do not say anything wrong in the discussion.” The more that we police it, the less likely people are to be open and free in their conversations, both within their families and with the professionals we want to assess them.
I recognise my right hon. Friend’s argument. The fact is that encouraging assisted suicide is theoretically illegal—in fact, it will be illegal under the Bill—so there is already that potential for the policing of conversations. If it is concluded that a family member has encouraged somebody to an assisted suicide, that would be illegal, because that has not been specifically allowed. The law already specifies that it is illegal; we are concerned about ensuring that that is fully checked for in the early conversations that people have with their doctors—that the applicant does not simply have to get over the coercion bar, but that they have to get over this lower but just as important bar around the potential for encouragement and undue influence. If my right hon. Friend is concerned that the concept of encouragement will have a chilling effect on family conversations, he should legislate accordingly, so as to prevent it from being used at the later, criminal stage.
We need to think about this in practical terms. If the word “encouraged” is included in the Bill, a co-ordinating doctor may feel that it is their duty to say to somebody, “Has anybody encouraged you to take this decision?” They will use that specific word, rather than have a general conversation that is designed to detect coercion, which, as has been pointed out, covers the concept of encouragement or undue influence.
My hon. Friend may think that that point is semantic, but we have to remember that the words will be interpreted relatively literally, certainly in the early stages after the passage of this legislation. To ensure that they are within the bounds of the law, a doctor may feel that they have specifically to say, “Have you been encouraged to do this?” That will then start to be interpreted by families in the way that they respond. What we really want is instead a general discussion, which is where, in my experience, professionals are expert at teasing out the understanding and motivation of individuals.
If my right hon. Friend just wants a free and easy, free-flowing discussion that has no specific questions that need to be asked or answered, there should not be any requirement for them to be testing for coercion. There is already a requirement to ensure that there has been no coercion and that the person is making the decision voluntarily. That imposes an expectation that they would be asking a specific question to the applicant. Personally, I think it is appropriate to ask the applicant, “Have you been encouraged? Has influence been put upon you?” If the answer is, “No, it’s all fine; my wife agrees with me, but I have not been encouraged to it,” then the test is passed.
The issue for us in the conversation on this amendment is that we have talked about coercion, undue pressure, undue influence, encouragement and all that, but we have not talked about the benefit to others. It is simply a different conversation; it is about understanding that a person has been coerced and so on, but also for what reason. What is the benefit to others? That is my understanding of the amendment, and that is why I am speaking to and supporting it.
Unfortunately, the Bill as it stands does not have all the necessary safeguards for all those who see themselves as burdens to others, and that is why I support the amendment.
I have listened very carefully to the hon. Member, who represents the fine town of Bradford, and to her personal experiences, which have coloured her view. I understand that of which she speaks, and she might be interested to know that I was the author of the first ever violence against women and girls strategy in the country when I was at City Hall. I dealt closely with harmful cultural practices in that strategy, so I do understand the difficulties she elaborated with detecting and combating the influences to which she referred. However, I am going to disappoint her, because I am going to explain why I believe that the amendments make that more difficult and run the risk of making the Bill less safe.
I should mention first, though, that she said that we are dealing with notions of autonomy and trying to achieve a position where people seeking an assisted death do so as a matter of free choice, and she is exactly right: that is what we are all about and trying to achieve. However, as I hope I can illustrate, the amendments may make that more difficult on three levels.
We have talked a lot over the last few hours about precision and novel terms in legality. My first issue with the amendments is the lack of that precision. For example, what does “physical pain” mean? Is it all pain? Is it something as minor as a headache? Is it perceived or actual pain? Is it fear? Does fear become a physical pain, or is it a mental pain?
In the closing stages of bowel cancer, for example, a number of things may happen and a number of things may cause somebody to die. They can have a perforated bowel caused largely by a blockage, as I am sure my hon. Friend the Member for Solihull West and Shirley would say. That would be incredibly painful and lead to peritonitis and organ failure, which eventually leads to death. However, there is a situation where a blockage in the bowel causes a person to vomit effectively semi-digested food and faeces. Is that painful? I do not know whether that is a classification of physical pain. It is certainly uncomfortable and unpleasant, but is it actually painful? I find that the definition of “physical pain”, undefined as it is, and which may be a matter of degree, injects complexity for doctors and lawyers in their assessment of the motivation of a person seeking assisted dying.
Similarly, I do not really know what “benefit” means in the amendments dealing with that. Does it mean financial benefit? Does it mean emotional benefit? Is it perceived or real benefit? Does the doctor have to assess whether a third party is actually getting benefit? Let us assume that it is emotional benefit and that I say—I think it is perfectly legitimate, as my hon. Friend said, for me to say this—“I do not wish my child to witness, know or even learn that the way I died was from the fungating tumours in my neck bursting and,” as we heard on Second Reading, “me drowning in my own bodily fluids. I do not want to get to that stage, and I do not want to burden my child with that.” Do I have to say to the child, who is perhaps an adult child, “How do you feel about it? Are you going to benefit from this or not?” They will respond, “Absolutely not. I want my dad to live as long as possible,” or, “I want my dad to have what he wants to have.”
It is very difficult in these circumstances—do not forget that this will be crawled over by lawyers and doctors—to understand what is actually meant by “benefit”. These are new words—novel concepts—that are being introduced into the law. I did look to see whether there were similar circumstances elsewhere in legislation, and I could not find any. To me, they inject an element of complexity into what we hoped would be, as we discussed earlier, a settled and comprehensible legal framework, in which doctors have previously operated, and should operate into the future. As I say, my first objection is that the amendments inject novel concepts that are largely undefined and that may be actual or perceived, both by the person who is being assessed and by those who are presumably to be in receipt of the benefit.
I am afraid there is also—I am not sure, particularly on the amendments tabled by my right hon. Friend the Member for Braintree—a question in my mind about where my “sake”, whatever that word means, collides with someone else’s “benefit”. As the hon. Member for Ipswich said, if it makes me happy—if part of my dying is me taking satisfaction in the fact that I am not burdening my children with the emotional trauma of watching me die in horrible circumstances—is that for my sake or for their benefit?
The right hon. Gentleman is making a powerful speech. In response to the comment by my hon. Friend the Member for Ipswich, people can have, and will have, an incidental benefit when somebody with autonomy makes a decision. The Government could table tidying-up amendments to clarify that and make this amendment stronger, if it gives an extra safeguard for those who are seeking assisted dying, should the Bill become law.
I understand what the hon. Lady is saying, but I am afraid that the amendments do not say that. Even if they did, there would be some difficulty, because you are asking for a further level of complexity in what should be, we hope, a decision made between doctor and patient, in private and confidential circumstances where sensitivity is needed and where we are asking medics to tease out motivations from individuals. I hate to use a pejorative word like “woolly”, but I find the lack of precision in the language troubling. I think it will create yet more complexity and jeopardy for doctors and lawyers.
Tom Gordon
I just wondered whether the right hon. Member shares my concerns that the amendment would end up in the territory of legislators and parliamentarians almost trying to act as thought police, when we should be respecting the autonomy of people in the decisions they make.
I am grateful to the hon. Gentleman because he brings me to my second point, which is exactly that—autonomy. We heard in oral evidence, and it comes through from some of the written evidence, that people’s motivations for seeking an assisted death are often a mixture—a cocktail—of different reasons. Some are about pain, and some are about trauma, for them and for others, but the overarching motivation is always this notion of control. What people seem to be most concerned about is, “If I contemplate my end, I want to have some kind of say, as I get to the end, about what it will be like. That end may be a variety of different outcomes.”
As my hon. Friend the Member for Solihull West and Shirley, or any of the doctors in the room, will know, if someone is dying of bowel cancer, any number of things may kill them. Palliative care is able to help with some of them, but not others. In my experience, the notion in people’s minds is that, as they approach that point, they just want the reassurance that they can control it and have the option, if they so wish. That is often their primary motivation. As the hon. Member for Bradford West said, there may be ancillary results and reasons why people want that control, but the primary purpose is control.
My right hon. Friend says that the primary purpose is control, and that is certainly the argument made by some of the most passionate advocates of this sort of legislation. However, does he recognise that, in the majority of cases, in jurisdictions where this is legal, being a burden is a primary cause for people to seek an assisted death? People request an assisted death explicitly for the purpose of not being a burden on others. If my right hon. Friend is content with that because he respects their autonomy, and he thinks that that is an acceptable reason for people to want to die, that is fine, and let us say so. However, I do not think it is acceptable to hide behind the idea that we are talking about people who simply want to control their own passing. In fact, many want to do this because they are concerned about being a burden on others.
I will make two points in response to my hon. Friend. First, I am not sure that it is entirely accurate that burden is the primary purpose. It is certainly the case that when people going through this process in other jurisdictions are surveyed and rank their reasons, burden may be one. We heard that in some of the evidence that we had from overseas, but as I said at the start of my remarks, it depends what we mean by “burden”. Personally, I think it is perfectly legitimate for me to want to spare my children from witnessing, knowing or even learning that I may have died in a particularly unpleasant way. I may therefore wish to go a few weeks before that eventuality and say goodbye to them, gathering them around my deathbed—we heard very movingly about this from one of the witnesses—to say farewell while I still can, before my body is ravaged by the final stages of the disease that is destroying me. I do not think that relieving them from a traumatic burden is anything negative.
Does the right hon. Gentleman not accept that “burden” here encompasses many different types of burden. One that weighs heavily on many of my constituents is financial burden—in particular, the cost of care at the end of life. That is very directly something that they would wish to relieve their children and descendants of. Does he not accept that the word “burden”, while I hear what he says about it being imprecise, nevertheless contains many different examples, rather than just the one to which he referred?
The hon. Lady is quite right, and she makes my point very neatly for me: the language here is so wide-ranging that it could be anything. Other provisions in the Bill deal with exactly the concerns she expresses. A specific part of the Bill talks about people benefiting financially and how they may not participate. We had a long discussion about coercion and pressure.
Dr Tidball
I am delighted that the right hon. Gentleman has made that point. Inserting the amendment—and the language of, and focus on, “benefit”—in a paragraph that deals with the two criminal concepts of coercion and pressure, actually undermines the existing focus of the paragraph. Does he agree that it is better and stronger to keep the focus on the two criminal concepts, which would require the mens rea—which I think some colleagues are indicating—and the actus reus, and that that is not achieved by inserting the language about benefits?
I am grateful to the hon. Lady, who has made the case much more eloquently than I could have done. She is quite right. We have heard endlessly from witnesses and others that simplicity is best, and that by inserting this kind of complexity, we create yet more difficulty.
I have two other things to say. From the point of view of autonomy, the amendments are trying to police the thoughts of the individual who comes forward in a way that, as I said, may mean that they become guarded in conversations with their physicians. One of the things that I have learned over the past 10 years or so, and that we have heard from witnesses, is that many people who are in extremis at their end are very determined that they will achieve a death other than what nature has laid out before them. That determination comes through from those who go to Switzerland, often in the teeth of the wishes of their family. They will go in secrecy, not telling anyone, because they do not want to put anyone else under threat of criminal prosecution.
We have heard lots of stories over the years—some were mentioned on Second Reading—of people who have killed themselves in terrible circumstances, again, secretly determined that they will not go through that end. My concern is that if we insert such amendments into the Bill, we start to police the conversation in a way that means that people determined to achieve an assisted death will do other than have a free and frank exchange in a sensitive way with their physician. Instead, they will try to tread the path to get what they want.
For example, if the issue was physical pain, the conversation might go: “Why do you want an assisted death?” “Well, of course it is just the pain. It’s all the pain. That is all I want—I’m just frightened about the pain.” “Are you doing it for the benefit of others?” “No—absolutely not! I am doing it completely for myself.” We can see how people might start to modify their conversation, rather than having what should be a sympathetic, empathetic, conversation between doctor and patient about where they should go.
My concern is that, as with a previous grouping, this attempt to micromanage and police the conversation, at the same time as attempting to police the way people should be thinking, threatens the whole concept of assessment and relationship, which we have heard about from many physicians—that is done on a daily basis in not dissimilar circumstances, where life and death is at stake. That complexity and those extra layers, in my view, start to make the Bill less safe.
I want to pick up on the right hon. Gentleman’s point about wanting patients to be able to have a free and frank conversation with their doctors. In a hypothetical scenario, someone suffering from a terminal illness and in the last six months of their life might say to their doctor, “I would like to explore an assisted dying option.” The doctor asks, “Why is that?” They say, to hark back to my previous example, “Because I want to save my children the cost of my end-of-life care bills.” How does the right hon. Gentleman think the doctor should react in that circumstance, given that that is a free and frank explanation of the person’s reasons?
The Bill makes it quite obvious that the doctor would not regard that as a legitimate reason to give people an assisted death, if that was their only purpose. As we said before, however, most people have a range of purposes for seeking an assisted death. In my view—certainly in my experience—the primary one is always having the option of control at the end.
Will my right hon. Friend explain what the doctor would do if he or she did not think that there was an appropriate reason to approve the death? The Bill simply requires there to be a settled and informed view. As the hon. Member for Richmond Park says, the motivation might be that the person wanted to save their children the care costs—at which point the doctor, if they could not find evidence of coercion, would say, “Go for it. That is a perfectly good reason.” Is that not the case?
It would depend on the circumstances of whether the doctor perceived that the request was made under pressure or coercion. Pressure or coercion can be financial as well as emotional. I would expect and hope that a doctor would question a motivation on that basis. The point, however, is that we have to be very careful about making a law that attempts to police the thoughts of individuals. My concern is that if we start to delineate to an ever more exacting degree what is and is not acceptable as a motivation, we will start to steer people down a road on which they try—this phrase has been used—to game the system to get what they want.
As many of us know, because we have seen it, we live in an age of social media where it is perfectly possible to go on to the internet to get advice about how best to apply for certain benefits and welfare: how someone can best fill in a form, answer certain questions or go through a personal independence payment assessment to get what they want, even though that may not be appropriate for them.
I have no doubt that if, as it develops, we delineate the issue in such a way that there are certain things one should say and certain things one should not, we will run the risk of limiting the conversation that the doctor can have, in a way that is not safe.
Obviously, we do not want people gaming the system, but I would rather that there were a system, even if it were gamed, than to have no safeguards whatever—which, I am afraid to say, is the case with this Bill. The only coercion that the doctor is looking for is coercion from other people; we do not think that that barrier is strong enough, but it is about coercion from outside. But internal coercion—people saying, “I want to do this to save my family care costs, and not just the sight of me in agony”—would be perfectly acceptable under the Bill. Is my right hon. Friend content with that?
I am not sure that that would be perfectly acceptable under the Bill; I would be interested to hear what clause my hon. Friend has in mind. As we have discussed, financial coercion is a well perceived concept. As we have heard from other Members, it can be subtle and implied. That will be for practice guidelines, but as far as I can see it is perfectly well covered in the legislation.
I am sorry to push my right hon. Friend further but to reiterate my point, we are not talking about external coercion. We are talking about the explicit motivation of somebody with a settled and informed wish that they want to die to save their family the cost of their care. My understanding is that the Bill would allow that. Does he agree and is he content with that?
That is not my interpretation of the Bill, no. I would not be content for that to be somebody’s primary purpose—of course not. My point remains: we run into dangerous ground when we start, by legislation, to try to police the thoughts and motivation of an individual, other than in trying to detect external pressure from others. I am concerned that the amendments run us up that dead end.
Surely, if we are policing the thoughts of the individual seeking to avail themselves of the service, we are working actively against that individual’s autonomy?
That is exactly my point, and the point on which I was going to conclude. All of the Bill is designed to put control in the hands of dying people as they face what they regard as an undesirable ending to their life. We are trying to do so within the scope of safeguards that protect those who are vulnerable and not able to make a decision freely for themselves.
If we continue down the line of inserting this kind of complexity into the system, I am afraid that we run the risk of creating a very narrow channel for people to navigate. That will mean either that they feel forced to navigate it in a particular way or that they cannot navigate it at all, which will serve to restrict the conversation between assessing medics and patients in an undesirable way. For those reasons and because of the legal imprecision with which they are drafted, I am afraid I will be opposing the amendments, well motivated though they are.
The purpose of the amendments, and the reason why I am supporting them, is that they make the Bill honest. They will make the Bill do what the public think it does and is the reason why so many people around the country and in Parliament have supported it: because they understand it to be for exactly the purpose specified in the amendments. In fact, the amendments add safeguards that at least two strong supporters of the Bill in the House of Commons—I will not mention them—thought were already there. Those people have gone on the record stating that these safeguards exist in the Bill, but they do not.
We need to acknowledge motivation. As I said in my exchange with my right hon. Friend the Member for North West Hampshire, my concern is that the absence of recognition of motivation is a significant lacuna in the Bill. Earlier—or perhaps it was yesterday—my hon. Friend the Member for Solihull West and Shirley sought to draw a distinction between a depressed person who wants to die because of their terminal illness and someone who wants to die because of their depression. But in the Bill as it is written, there is no requirement for any causal link between the terminal illness and the desire to die. Under the Bill, someone’s reason for wanting to die does not need to be linked to the terminal illness; in fact, no reason is required. The Bill is totally neutral—in fact, it is silent—on the whole question of motivation. My hon. Friend also talked in an intervention about people who want to end their lives because of suffering and pain—again, that is not mentioned in the Bill. I will come to that shortly when I discuss amendment 235.
There is no reason required to see a clear, settled and informed wish. As discussed earlier, I recognise that there are safeguards intended to detect coercion or pressure, but that does not include people putting pressure on themselves. It is important to consider people’s motivation in situations such as the example given of somebody who wants to spare their family the ordeal—the trauma—of witnessing a bad death. Those sorts of people do not write in to us, by the way. Evidence has been submitted by many people who have experienced the trauma of having watched their relative die badly, but there is also the experience of people whose relatives have been through an assisted death.
I was talking earlier to the noble Baroness Finlay, the former chair of the National Council for Palliative Care, who cited evidence heard by the Commission on Palliative and End-of-Life Care. A man requested and received an assisted death in the Netherlands for the explicit purpose of sparing his son from seeing him degenerate and die badly. The son was desperate for his father to stay alive—he wanted to go with him through the ordeal—but the father refused. The impact on that young man has been significant, traumatic and destructive.
Even if the patient wishes to do something for the sake of their children, it is not necessarily the case that that will happen or that it will be a good thing. Children can be traumatised by such decisions. Crucially, we should insist that the Bill does what it aspires to do and what many of its advocates have set out clearly over many months. Its purpose is to help people to die, specifically to avoid terrible pain and suffering—but crucially, for themselves and not because they fear that they will be a burden. The fact is that many people do feel that they would be a burden.
I pay tribute to the hon. Member for Harrogate and Knaresborough, who has intervened a couple of times this afternoon and made a very coherent argument about the importance of autonomy. I think he was suggesting—my right hon. Friend the Member for North West Hampshire hinted at this, too—that it is an appropriate decision if a person seeks an assisted death because they do not want to be a burden on others.
In fact, that point was made by people giving evidence to us from abroad. Some of the Australian witnesses—and, I think, the American witnesses—openly said, “Why not? This is consistent with people’s autonomous choice, and if they want to die to save their children’s inheritance or to prevent them from seeing them suffer, that is legitimate.” I would like more people to say openly, as a reason to legalise assisted death, that that is appropriate and that nobody should object—that the judges, doctors and everyone else should nod that through. I do not think that was the sense of the House on Second Reading and I do not personally think it is the view of the public, but if people think that is an acceptable reason to legislate for assisted dying, let us hear it.
I want to emphasise the point about the number of people who genuinely seek an assisted death because they feel that they are a burden on others—not for their own sake, but to save their loved ones money or to avert their distress. A very large number of people—I said most, but I correct myself; I think it is getting on for half of the relevant people in Oregon, Canada and elsewhere—cite burden as the reason for seeking an assisted death.
I note in passing—I hope the Committee will pay attention to this point—that I am concerned that we often feel we are legislating into a vacuum: we pass a law, it will apply, and that is that. As I said yesterday, the law is a teacher and has a direct cultural effect on society. It is very noteworthy that in countries where there is data on motivation, the number of people seeking an assisted death because they feel that they are a burden has risen significantly. It all started, naturally enough, with just the very desperate cases that we are all familiar with and we all understand the rationale for, but the number rose sharply. In the early years, between 12% and 34% across those four jurisdictions cited being a burden as a reason for seeking an assisted death. That has gone up to between 35% and 59% in the four jurisdictions—from around a quarter to around a half in terms of people who seek it. We could pass this law for the small number of people we think we want to help, but in due course many more people will avail themselves of an assisted death because they feel they are a burden.
For clarity, is my hon. Friend saying that he supports the amendments because he believes that the only reason that someone should have an assisted death is to avoid physical pain, not the circumstances that we have talked about—bursting arteries and fungating tumours—and therefore that if pain can be controlled, the notion of autonomy, control and choosing the time and place of my own death should all be dismissed?
The amendment is clear that the primary purpose should be to avoid physical pain. That needs no further clarification.
Let me turn to the discussion of pain. As I have said, the amendment would make the Bill honest and make it do what most people out there want it do. It would also have the great benefit, in my view at least, of reducing those who would be eligible for an assisted death to very a small number. I have heard the Bill’s advocates make the point repeatedly that we are talking about only a very small number of people.
The fact is that the most common reason for assisted suicide in other countries is not pain. Usually, in those countries, the law was passed on a wave of sympathy for people in agony at the end of their life, but most people do not seek an assisted death for the purpose of avoiding pain. The most common reason in Oregon, according to research there, is existential angst—emotional distress—not physical suffering. The Committee heard evidence from Western Australia that the most common reasons are loss of dignity, autonomy and the ability to enjoy life. In Tasmania, another place where there has been research, only 16% of people cite avoidance of pain as the reason for seeking an assisted death.
In my view, if we focused the Bill on pain, we could do even more to reduce the number of people who die in pain, because it should be even smaller than it is. Let me say a word or two about the palliation of pain. We have no doctors in the Committee who are on my side of the argument to make this point, so I refer to experts outside the room. Quite a lot of weight has been put on research published last year by the Office of Health Economics that said that 20 people would die every day in pain, even with access to palliative care. The point is often made that palliative care is wonderful—we all agree that it needs more resourcing and it should be more widely available—but even if it were provided brilliantly for everyone, a large number of people would still die in pain.
Without digging into the problems with the research, I simply point out that the methodology was very suspect. It assumed that people who receive hospice care are the same with respect to pain as people who do not. It just looked at the hospice population and extrapolated more broadly. That is, of course, ridiculous, because people in a hospice are much more likely to be suffering and to be experiencing bad pain; often, that is the reason that they are admitted to the hospice. That extrapolation was inappropriate.
Terminally Ill Adults (End of Life) Bill (Twelfth sitting) Debate
Full Debate: Read Full DebateKit Malthouse
Main Page: Kit Malthouse (Conservative - North West Hampshire)Department Debates - View all Kit Malthouse's debates with the Ministry of Justice
(1 year, 5 months ago)
Public Bill CommitteesThat brings me on very nicely to my next point, so I thank my hon. Friend for his intervention. At the moment, the Bill accommodates a two-year implementation period, which is really important because it will take time to put the procedures in place: it will take time to train people and it will take time to work holistically with the overall healthcare system. It could end up being longer than two years. If that is the case to put all the robust systems in place—to improve things, and to work holistically with palliative care and other aspects of the NHS—then that is the right thing to do, and I would be open-minded to a conversation about that.
To finish, I also note that the General Medical Council’s “Good medical practice” guide, which is the framework of professional standards, already provides that in providing clinical care a doctor
“must refer a patient to another suitably qualified practitioner when this serves their needs”.
This is what doctors do: they refer if they need extra advice; they take a holistic approach.
I just want to quickly point out that we have a check on the conversations that happen in the first stages. In clause 8, which covers the second doctor’s assessment, that second doctor must be satisfied that the individual has a “clear, settled” and, critically, “informed” wish to end their own life. So, there will be a doctor who is verifying that the person is informed properly about their options. My concern about the amendments is that, as the hon. Lady says, we are inserting now a third doctor into a system which, with regard to the panel, will already have three, four or five specialists involved in the assessment of the care.
The right hon. Gentleman is absolutely right. It feeds into comments that have already been made about how difficult we are making the process. I agree that this should be a difficult process—it should be a robust process, with thorough checks, safeguards and balances throughout—but we are in danger of forgetting the dying person at the heart of the process.
We are all being very courteous, and it is absolutely right that we should be. I have absolute respect for the good faith of every Member here, but let us not use cotton wool in these debates. I am sorry to say that I do not accept that the Committee has listened—well, it might have listened closely, but it has not accepted a single amendment, including amendment 281, which would have put into law the principle in which the hon. Member for Bradford West believes, which is that palliative care should be an option. Why was that not accepted? The Committee has decided that it will proceed with the Bill as it is.
The fact is that the Bill will give maximum autotomy, within very broad parameters, to patients, many of whom will be very vulnerable. It is an autonomy Bill masquerading as a safeguarding Bill. When we attempt to strengthen the safeguards, they are described as bureaucratic hurdles. If the Bill becomes law, I worry about what will happen to the very limited safeguards that do exist. What we see elsewhere will happen, which is that the safeguards that do exist are treated as bureaucratic hurdles. They are in fact treated, and explicitly described, as we heard from the Australian witnesses, as barriers to a human right. What were safeguards become discrimination. I am afraid that that is the road we are going down.
The point about autonomy is often made. As I say, I think that this Bill actually has autonomy at its heart. The hon. Member for Spen Valley is right to make that point. That is really what is going on here. She wants people to be able to request help to commit suicide—to end their lives. The fact is that for the most vulnerable people, creating this option, especially when we have now switched off the obligation to seek a palliative care pathway and directed people straight down the road towards an assisted death—
I am sorry if it offends Members, but the fact is that the Bill in its present form, with the amendments rejected, will place no obligation on doctors to refer people to palliative care or to seek a palliative care consultation. Many will do so, of course—many good doctors will do exactly that—but they will not be obliged to. If we are imagining that every doctor will be as brilliant as the best doctors, I am afraid that I will have to talk about the Liverpool care pathway and the many tragic scandals that we are constantly dealing with. It is simply not the case that the option of a palliative care consultation equates to the absolute expectation that it will happen.
I am grateful to the hon. Gentleman. I thought that might be the case too, and I was wondering about that, but I am very concerned about some of the evidence that Professor Whitty gave. I regret that the hon. Member for Spen Valley has removed the role of the chief medical officer from the process that she is designing by introducing the new commissioner, but I will not be sorry to see that particular chief medical officer excluded from the process. He has made significant mistakes; he had to write to the Committee to explain that he had misrepresented the Mental Capacity Act, and, on his evidence, the Committee voted to reject certain amendments.
I am concerned about what Professor Whitty said, but if the reason for including “medical condition” is to reflect the fact that there might be multiple diseases or illnesses that, together, mean that somebody is terminally ill, that is what should be stated in the Bill. It could very well include “a combination of illnesses or diseases that amount to terminal illness”. My concern is about this new concept of a medical condition, which, as I have said, implies something different from a disease or illness.
The Bill would say “the person’s death in consequence of illness or disease”—if we remove “medical condition” —so that would be the qualification or eligibility. If there is a number of illnesses or diseases that amount to a fatal prognosis, that would be captured in the clause, even once we have excluded medical condition, because the singular “illness” or “disease” would, as I understand it from our guidance on statutory interpretation, include the plural. If it is about there being a number of illnesses or diseases that add up to a fatality, the Bill as I propose to amend it would be adequate to the scenario that the hon. Member for Sunderland Central described and that Professor Whitty accounted for. The question is, what is additional illness or disease, or illnesses or diseases, that are captured by the term “medical condition”?
Let me give a quick example. Amyotrophic lateral sclerosis is described as a condition rather than a disease or an illness. ALS is not dissimilar to motor neurone disease, but nevertheless people regard themselves as having a condition rather than a disease.
Again, I am interested in that, because I would be surprised if that condition were not adequately captured by the term “illness” or “disease”. If not, we should seek further clarification, because we need to be very specific. Illness or disease has been adequate; it is adequate in the current law on terminal illness for eligibility for benefits and pensions. I await clarification on what is added by the term “medical condition”, because my concern is that it opens the door to frailty. Going back to Chris Whitty’s evidence, I am concerned at his suggestion that frailty should be an eligible condition for an assisted death.
I will wrap up shortly so that hon. Members have time to speak to other amendments, but I will quickly refer to amendment 181 tabled by the hon. Member for Spen Valley and amendment 11 tabled by my hon. Friend the Member for South Northamptonshire (Sarah Bool), which attempt to do the same thing as my amendments. They seek to protect disabled or mentally ill people, but they do so explicitly by disapplying the provisions of the Bill for those groups, or they attempt to do so. Only amendment 11 actually does, while amendment 181 fails to do so, in my view.
Let us look at subsection (3), which attempts to protect disabled people and those with mental disorders, but which, on closer inspection, is ineffective or even meaningless. In statutory interpretation, the first phrase,
“For the avoidance of doubt.”
indicates that the subsection does not add anything to the Bill except clarity. It is intended not to change the law that is being enacted by the Bill, but to clarify the meaning of the Bill. My point is that it does not add anything—in fact, it signals that the clause can be disregarded. It is like an explanatory note and not actually relevant to the Bill. Its effect therefore negates the point that it tries to make. In including it, the hon. Lady protests too much and exposes the weakness that the clause fails to overcome. It invites a court to disregard the protection it pretends to offer by stating that that protection has no force except what is elsewhere in the Bill.
Terminally Ill Adults (End of Life) Bill (Thirteenth sitting) Debate
Full Debate: Read Full DebateKit Malthouse
Main Page: Kit Malthouse (Conservative - North West Hampshire)Department Debates - View all Kit Malthouse's debates with the Department of Health and Social Care
(1 year, 5 months ago)
Public Bill CommitteesMy understanding is that amendment 181 is clear that the qualification for accessing assisted dying has to be based on the definitions in the main body of the Bill. If passed by the Committee, the amendment will make it clear that an eating disorder does not qualify for access to that service. There has to be another, clear definition that does qualify under the terms set out in the main body of the Bill.
I just want to illustrate to the Committee that people with eating disorders, certainly as they come towards the end of their life, are already subject to quite assertive action by the state. For example, over the past few years, generally, where hospitals have detected that an individual is effectively trying to starve themselves to death, they have applied to the Court of Protection and got orders for forcible treatment. In that application, it is determined that that person does not have the mental capacity to make decisions about their own medical care.
I do not want the Committee to labour under the illusion that people with anorexia or other eating disorders are going to wander up and suddenly ask for an assisted death. If there has been a detection that they are trying to get themselves eligible by effectively causing organ failure by starvation, the system would have intervened well before then, effectively to force them to be treated.
First, this is not an issue for a tribunal, where it would be on the balance of probabilities; it is not an issue for a court of law or a criminal court, where we would be using proof beyond reasonable doubt. What I am trying to demonstrate is that doctors, in those diagnoses where they do get it right, have much more certainty. It might be that people have six months to live because they have different types of cancer. I am certainly not a clinician or an oncologist, but I know from the evidence we have had and from speaking to people that some people’s diseases—the specialists know better—have a trajectory of plateauing out and then dropping right at the end and some have a jagged kind of decline. Some of those diseases can be predicted with much more clarity than others. On the surface of it, in September, it might be the case for somebody that that is within the time—as for one lady who was told that she would not have more than six months to live. She is the founder of the Music of Black Origin awards and I was with her last week. She was absolutely fighting; she was not supposed to make it to that day. It is for the medics to decide—it is not for me to decide—but I would like medics to have much more certainty than they currently do, so that we would not have 47% of cases being misdiagnosed. That is what I am trying to get to, but I thank my hon. Friend for his intervention.
I argue that there is still a danger of using the standard prognosis that is currently in the Bill. The current research into doctors’ prognoses indicates that about half of their estimates are incorrect. My amendment would hold doctors to a higher standard of certainty. Under the measure, they would be explicitly held to a prognosis that death would occur with reasonable certainty within six months, and that that would have to be true even if the patient underwent all recommended treatment.
To go back to my hon. Friend’s intervention, this amendment is about raising the bar for how our medics make decisions. I submit that it would be a stronger test than the one currently included in the Bill. My hon. Friend the Member for Spen Valley has frequently stated that she wishes to create a Bill with the toughest safeguards in the world. I keep coming back to that, because the whole purpose of speaking to all these amendments is to put in opportunities to try to strengthen the Bill. By their nature, all these amendments reflect hon. Members’ concerns. This amendment would tighten the prognostic standard required of doctors and would therefore contribute towards tightening the Bill’s safeguards. I hope that hon. Members support it.
Finally, I turn to amendment 402. I will repeat a lot about anorexia, but it is an important amendment. I have tabled it for a simple but extremely important purpose: to prevent people from qualifying for assisted dying by stopping eating and drinking to the degree that they develop severe malnutrition, such that a doctor would give them a prognosis of six months to live. It specifically aims to protect people with severe eating disorders, including anorexia nervosa, and would also protect people with a severe wish, as one of the psychiatrists who testified before the Committee put it, to “hasten death”. I hope that my hon. Friend the Member for Spen Valley, and all other Committee members, will support this amendment.
Let us make no mistake: the Bill, as currently drafted, has a horrible loophole that all of us should seek to close. We know that anorexia sufferers and other people with eating disorders can and do stop eating to the point where they are dying of malnutrition. We should not allow such people to qualify for assisted death. Unfortunately, that is not a hypothetical danger; it is happening.
We know from the evidence that the Committee has received that that has happened in other countries. A group of eight experts on eating disorders submitted written evidence TIAB54 to the Committee some weeks ago. The experts included Chelsea Roff, who has been referred to many times in this Committee, and who gave clear testimony before the Committee, as well as seven medical doctors from hospitals in the UK, the US and Canada.
I hope that all Committee members have read the evidence, but I would understand if they had not, because we have had nearly 400 pieces of evidence to go through and very little time to read it. It seems to me, however, that if we are trying to write the best possible Bill, with the strongest possible safeguards, we have to pay the written evidence of experts the attention that it deserves. In their written evidence, that group of experts said:
“Patients with severe eating disorders frequently experience profound psychological distress and may express a desire to die. While this may appear to reflect a clear and informed wish, it is often a symptom of their psychiatric condition, which is remediable with appropriate treatment.”
The experts found that at least 60 patients with eating disorders received assisted death in several jurisdictions worldwide, including the US, Canada, the Netherlands and Belgium. I stress the phrase “at least 60” because we cannot be entirely sure that that is the full total. It is sadly the case that some jurisdictions are much more painstaking and transparent in the data they publish on assisted death than others.
In itself, it is tragic that people died in that way, but two things surely make the fact even worse. There are certainly men with eating disorders, but this is a problem that disproportionately affects women and girls. We know that the incidence of anorexia nervosa is much higher among women than among men in every age group. That is tragic. In every case we know of where a person with an eating disorder received an assisted death, that person has been a woman. I say it again: we cannot allow the Bill, as currently written, to stand. The Labour Government was elected with a mandate to reduce violence against women and girls. We surely cannot pursue that goal while at the same time increasing the vulnerability of women and girls who have eating disorders. There is nothing in the Bill as it currently stands that would stop doctors signing off on assisted death for someone who had starved themselves into malnutrition.
The courts in England and Wales have already begun accepting that some people with anorexia have reached a terminal stage. In the Court of Protection case, The NHS Trust v. L & Others, which took place in 2012, a 29-year-old with severe anorexia was described in the ruling as follows:
“The prospects of her recovery overall approach zero…given that it is extremely unlikely that Ms L will recover from her anorexia…in best interests to move to palliative care if L…in terminal stage of her illness.”
The right hon. Member for North West Hampshire raised the Court of Protection. There are 10 cases where the Court of Protection has made rulings. Of them, only one case, in 2012, ruled that the young lady could be force-fed.
My understanding is that it is the other way around. In all but one case, force-feeding was decided by the courts. In the case the hon. Lady is referring to, L, the court did wrestle over that particular issue and realised that, such was the advanced stage of the patient’s condition and the complexities of force-feeding, it could not quite bring itself to authorise it. My understanding is that in all bar one case force-feeding has been authorised.
Actually, it was the other way around and I am happy to provide a reference to the right hon. Gentleman. Nine cases found lack of capacity, but still not in the best interest. One of the girls was 19 years old. The judge found that they lacked capacity to make decisions about their treatment. The question of whether they had the capacity to decide to end their life is completely different and not something we have asked judges to rule on before. The judge’s ruling clearly implied the capacity to refuse force-feeding even if it resulted in their death. I am happy to provide the references for that. It was against their best interest to force-feed them. Tragically, in nine of the 10 cases the judges accepted that that would inevitably lead to the deaths of those young girls.
My hon. Friend the Member for Spen Valley has repeatedly stressed that her Bill is modelled on the Death with Dignity law in Oregon.
I thank my hon. Friend for his intervention, but the truth of the matter is we have 10 cases that have gone to the Court of Protection. In nine of those 10 cases, judges ruled that the young people—women and girls, one was only 19—did have the capacity not to take treatment.
Just to clarify, what I said earlier was slightly incorrect—I misread my briefing. While the hon. Lady may be right that the court decided not to proceed with force-feeding, a number of those applications were by the individual to stop the force-feeding. While the court decided that, on balance, that was the right thing to do, in all those cases since 2012 the individual was not found to have capacity to make decisions about their own condition; the decision was made by the court for them. That means that, under the terms of the Bill, they would not qualify. Some of those cases were quite complicated. A number of them, as I read it—
The Chair
To some extent, there is an issue here of repetition. Standing Order No. 42 gives me the power to stop potential repetition. I do not want to use it—I do not want to interfere with the debate—but I am afraid we are getting to the point of repetition. If I need to invoke Standing Order No. 42, I will.
I thank the right hon. Member for his intervention, but my understanding is that the judge found that those individuals lacked capacity to make decisions about their treatment; whether they had the capacity to decide to end their life is a completely different test. I apologise in advance for repeating this, but it is not something that we have tested. They had the capacity to refuse. The judge ruled that they could not be force-fed. Tragically, in nine cases, while not force-feeding those young women would lead to their death, the judge insisted that force-feeding would not be in their best interests. That is what happened in those cases.
I stand to be corrected, but my understanding is that in the seminal case that the hon. Lady is talking about, the case of The NHS Trust vs. L, the court decided not to force-feed L because the prognosis was that force-feeding would precipitate her death.
I thank the right hon. Member for his intervention. I have talked about that case, and the court concluded:
“The prospects of her recovery overall approach zero… Given that it is extremely unlikely that Ms L will recover from her anorexia it is…in her best interests to”
move to palliative care, as it was considered a terminal illness. In some ways, that makes my point for me: she was diagnosed as terminally ill. The purpose of the amendment is to close that loophole. The majority of these cases are young girls and young women. I do not want them to get to a stage where they qualify under the Bill because they have a terminal illness due to refusing food, because that can be treated. That is the point that I am trying to make.
Let us say that only one or two people with anorexia have an assisted death if the Bill becomes law without my amendment. I hope that every member of the Committee would agree that even one such death would be unacceptable. Some might say, “Oh, but we must not make the perfect the enemy of the good.” That has been said in the debate, or sentiments have been expressed that reflect that sentence.
That is a good argument to make when we are trying to persuade our teenagers to finish their homework for school and so on. It does not wash for me when we are trying to create a Bill with the strongest possible safeguards for vulnerable adults, and it is too close to the arguments made in favour of brutal actions across the globe. We say things like, “To make an omelette, you’ve got to crack a few eggs.” If we want to make the Bill the best it can be, we cannot use such arguments. Perfection is not the enemy of the good—perfection is absolutely what we should be pursuing in this Committee.
Reference was made to one of the witnesses who gave oral evidence. I remember being aghast at the idea that these two people who died in Oregon were somehow a red herring and that there had been only two. It was really disappointing, and I was extremely angry at that comment. That is not something we should be doing or the standard we should be setting. We cannot be saying that.
There is nothing good about letting people who have sadly reached an advanced state of malnutrition be given assisted dying. Surely we can agree on that. If this Bill does not include my safeguard, it will do two things. First, it will increase the dangers of anorexia. People already develop anorexia to such a degree that they perish of malnutrition. Allowing such people to apply for assisted dying will mean that more severe anorexics die. If we do not adopt my safeguard, we run the further risk that those who are not anorexic, but wish to hasten death, stop eating in order to qualify for an assisted death. Both of those would be truly malign. I would hope all Members of the Committee will accept my amendment to protect those who would otherwise be at risk of starving themselves to an assisted death.
I also want to bring to the Committee’s attention a public letter that has been released this afternoon by nearly 40 individuals who work in the field of eating disorders. They have said, on the amendment to which I am speaking:
“This amendment states that mental illness alone does not qualify as a terminal illness, but as the legal text (“Nothing in this subsection…”) makes clear it has no effect beyond restating that the condition must meet the requirements of clause 2(1). If a doctor holds that a mental illness meets the test in clause 2(1) for terminal illness, this amendment will do nothing to prevent that.”
They further say:
“Eating disorders are treatable. They are life-threatening when left untreated or poorly treated, but this risk is preventable, and deaths from eating disorders are not inevitable. As campaigners, clinicians, charities, and organisations working with those affected, we urge the committee to take these concerns seriously and ensure this bill does not put people with eating disorders at risk of premature death under the guise of assisted dying.”
On my amendment 402, they say:
“Amendment 402: Explicitly states that a person cannot be deemed terminally ill because they have stopped eating or drinking.”
On amendment 48, they say:
“Amendment 48: Clarifies that a person is only considered terminally ill if their death is reasonably certain within six months, even with all recommended treatment.”
They are supporting those amendments, 9, 10, 48, 402 and 11. On that note, I will finish.
Terminally Ill Adults (End of Life) Bill (Fourteenth sitting) Debate
Full Debate: Read Full DebateKit Malthouse
Main Page: Kit Malthouse (Conservative - North West Hampshire)Department Debates - View all Kit Malthouse's debates with the Ministry of Justice
(1 year, 5 months ago)
Public Bill CommitteesIt is unlikely that I would ever vote for an assisted dying law but, if we are going to have one, I want to make it as safe as possible, which we all want. On those terms, in the spirit of a Bill that is going to pass, why not include these specific pieces of information? The hon. Lady says that, while it would not make the Bill more dangerous, it would overcomplicate it. Again, how does it overcomplicate it to add a few clauses specifying information that must be clearly communicated?
Amendment 50 requires that whoever is medically assessing capacity is also able to understand the legal implications. The final point of the amendment says that they have to understand what the insurance implications are likely to be, which would mean that they would have to inquire into the individual’s financial circumstances. They possibly might need to understand what provision they have made for their family.
It also references what the designation of death is likely to be, which again requires them to decide there and then what they will write on the death certificate, when it happens. As the hon. Member for Stroud said, much of what is in amendment 50 is already either in the Bill or implied by it. As Ministers have said before, we have a duty to the statute book not to embroider it to the extent that it becomes overcomplicated and unworkable. I do not think that any of us would necessarily argue with the points in amendment 50, other than perhaps the last one about legal expertise, but clarity leads to certainty, which leads to safety.
By that logic, the safest, clearest Bill would be one that simply authorised an assisted death without any of these checks whatsoever. My right hon. Friend made the point that this amendment requires the doctor to discuss with a patient all the implications of their death. That is perfectly appropriate—in fact, if that is not being done at some stage in the process, and if that is not clear in the Bill, it absolutely should be. Otherwise, how can we be sure that the person is making a settled, informed decision, with all considerations taken on board?
I am sorry if that imposes a little extra burden on the doctor. One of the great challenges of the Bill is that, if we are to do it properly and genuinely make it a Bill that is strong in its safeguards, a whole lot of people will have to do a whole lot of work. There will be a huge demand on all parts of the public sector. This is required, I am afraid. I do not accept that the content of the amendment is either already in the Bill or implied in it. There might be some remote piece of GMC guidance that touches on this, which we would hope is properly applied, and I appreciate the point about embroidery. Nevertheless, this is not embroidery; this is upholstery—it is necessary for the Bill to be strong.
Terminally Ill Adults (End of Life) Bill (Fifteenth sitting) Debate
Full Debate: Read Full DebateKit Malthouse
Main Page: Kit Malthouse (Conservative - North West Hampshire)Department Debates - View all Kit Malthouse's debates with the Department of Health and Social Care
(1 year, 5 months ago)
Public Bill Committees
Lewis Atkinson
No, I do not agree. The GMC guidance in many ways talks about not accepting treatment. It is equally as useful in situations involving the withdrawal of treatments and the end of life. Fundamentally, it goes back to the point that I made in my speech yesterday on informed decision making and the autonomy of the patient. They have to be informed, whether they are seeking treatment, the withdrawal of treatment or no treatment at all.
I want to reiterate briefly a point that we have made previously. The more we seek to police the conversations between medics and patient, the more guarded those conversations may become. As we know from the evidence that we have received, there are those who are determined to get an assisted death. The more we lay it out in black and white, the more people may seek to manage their responses. For example—forgive me, Mrs Harris, but this point is in response to the hon. Member for Ipswich—if my doctor said to me, “Do you have life insurance, Kit? We need to understand.”, I may say, “Actually, no, I don’t.” I may be forced or feel that I have to lie to the doctor to get what I want. We want an open conversation that is not guarded in that way, and including amendment 50 may produce exactly the opposite of what we are trying to achieve.
Lewis Atkinson
The right hon. Gentleman makes a good point. For the reasons that I have outlined, I will not support amendment 50. However, I would hate for any of us who do so to be characterised as disagreeing with the provision of relevant and available information about care and treatment. I certainly believe, as do some colleagues, that that is best done through existing regulatory routes, and primarily through the GMC. That is why I am unable to support amendment 50.
I thank the hon. Member for the last intervention that he will ever make on me.
The Government’s analysis of this group of amendments is that, to varying degrees, they would not add clarity; they would add more complexity, partly because they would either create a parallel legal framework or put new elements into the mix that would create operational challenges for practitioners. That is the Government’s fundamental analysis, but it is a finely balanced judgment and I absolutely accept the hon. Member’s argument.
The Minister can correct me if I am wrong, but my understanding is that there are extra checks in specific circumstances, on top of the MCA, as the hon. Member for Bexleyheath and Crayford said. They are generally specific to those circumstances: for example, if someone is going to marry, they have to understand what marriage means. Those extra checks have not necessarily been put into law via the Act. They may have been added through subsequent Acts, as we are now doing—for example, we will be looking at coercion, provisions on which are embedded in the Bill—or through case law. If someone is making a will, they have to understand what a will is. Guidance is then laid out for professionals who are assessing people under those circumstances. Is that the correct interpretation?
I think the right hon. Member has outlined what I was saying, in slightly sketchier terms, about legislation, regulation, training, capacity building and delivery. What he has described falls under what I would broadly refer to as regulations, but within that there are a multitude of interventions, which could include codes of practice, other forms of legislation, other forms of guidance—
I rise to speak briefly to amendment 368, which stands in the name of my right hon. Friend and constituency neighbour the Member for East Hampshire (Damian Hinds). I thought it was an interesting amendment to table, not least because I witnessed the introduction of the Down Syndrome Act 2022 by our colleague—sadly, now former colleague—Dr Liam Fox. He was a casualty of the last general election and is a great loss to the Chamber. His successor should certainly feel guilty about what he achieved, in my view; I am not sure that everybody would share that view, but there we are.
The Down Syndrome Act was an important private Member’s Bill that sought to recognise the status of people with Down’s syndrome in society and to sensitise institutions to their welfare and wellbeing. Essentially, it provides that guidance should be issued by the Government to various institutions across the health service and civil society generally, that would be used to accommodate the needs of and be sensitive to dealing with people with Down’s syndrome, particularly as they reach adulthood.
Although I am sympathetic to the amendment’s aims, there are a number of issues with it. I think its objectives could be, and frankly should be, addressed in other ways. Essentially, my reading of the Down Syndrome Act is that it is aimed at institutions such as health trusts and local authorities, not at individual practitioners. Unfortunately, under that Act, which asked the Government to issue guidance on Down’s syndrome, no guidance has been issued. We have a rather good legislation website in this House that tells us whether a Bill has had an impact or had any effect. If we look up the Act on it, the website tells us that there has been no effect yet. Certainly no guidance has been issued.
I am concerned about the interplay between the Down Syndrome Act and this Bill. However, there are opportunities where we can recognise the particular needs of those with Down’s syndrome, who will often be life-limited because of their condition. That needs to be taken into account. Amendment 394, which refers to advocates, will be important from that point of view, and new clause 8, which will hopefully be agreed to—I will certainly be supporting it—includes a duty to consult in regulation. I invite the Minister to make a commitment in his winding-up speech that groups representing those with Down’s syndrome would be part of the consultation package. I am sure that that is perfectly doable.
Clause 30, which deals with codes of practice that the Government will issue, and clause 31, which mandates the chief medical officer to produce guidance for medics and some of the training that will be required, should include modules on dealing with individuals with Down’s syndrome. I do not know whether anyone is intending to press amendment 368, and I do think that there are problems with it, but my undertaking is to go away and talk to my right hon. Friend the Member for East Hampshire about what could be done, perhaps at a later stage.
I will speak to the amendment shortly, but will the right hon. Gentleman take a commitment from me that I will happily join him in those conversations if it is at all helpful?
I am very grateful to the hon. Lady. It would be fantastic if she did that. However, I think we could probably deal with the intent of the amendment if the Minister were willing to commit—it is not a big commitment to make—that in the making of regulations and in the instructions to the CMO to produce guidance, he will stress the importance of consulting those with Down’s syndrome and dealing with the issues that they face, notwithstanding the impact of new clause 8 and amendment 394, and recognising that there is no guidance yet under the Down Syndrome Act. That might be a more belt-and-braces approach to what the amendment is trying to achieve than hoping that that Act and this Bill will interact in a beneficial way.
I am not sure my hon. Friend is entirely right. My understanding is that under law and medical ethics, doctors have to discuss all courses of action with someone, even if they believe a course of treatment might have adverse consequences. It is not that they can restrict themselves; they have to give someone the full range. That sits behind informed consent, surely.
Certainly, there are adverse consequences for all sorts of treatments, but putting assisted dying on the table and making it clear that this is an option for the patient can only be done, morally and legally, if the doctor thinks that it may be an appropriate treatment or intervention for the patient. Otherwise, if we are suggesting that the doctor might not think that this is a good thing for the patient to be doing, it is a serious breach of medical ethics for them to suggest it. It is one or the other. Either this a good thing for a doctor to suggest, or it is not.
I recognise that, but I repeat that by offering antidepressants, he is suggesting to his patients that it may well be the right thing for them to do. He puts in front of his patients a menu of options, with a degree of advice according to his expertise, but if assisted dying is on the menu, that is because assisted dying is regarded as something, as it were, that is healthy to eat. He would not put something on the menu that he did not think they should take. Everything on the menu is edible.
Maybe we have a different interpretation of the Montgomery case, but my interpretation is that it shifted the duty of doctors from being based on what a reasonable doctor should disclose to what a reasonable patient would want to know. In these circumstances, in which someone has a terminal diagnosis and only a few months to go, I guess we are saying in the Bill that a reasonable patient would want to know about this option.
Dr Opher
I will be really brief because many of my points have been made. Amendments 278, 8 and 124 are about doctor-initiated discussion. One of the really good things about the Bill, for medical practitioners and for patients, is that this law will clarify the situation. It is really important for doctors to know exactly where they stand. As mentioned by the hon. Member for Solihull West and Shirley, if we introduced the types of gagging order set out in these amendments, we would introduce a horrible blurring; doctors could be accused of bringing it up by relatives who do not want it to be done, and it creates a horrible morass in the law. I feel that it is not right to have a gag clause. The reason that it has been removed elsewhere is that it does not work; it does not protect patients and it does not protect doctors. We have to think of it in that way.
There are many ways in which patients can ask about all the options available, and we have to be able to say what they are. We cannot miss out one option because we are not allowed to say it. That is a very unhealthy doctor-patient relationship. If we want to foul up the doctor-patient relationship, this is a good way of doing it.
What we have been talking about this afternoon does not necessarily affect the reality of what the vast majority of conversations are like. There are some people who show up, get a terminal diagnosis and are told they are going to die within a matter of weeks, and they need an approach. But the vast majority of people will have been having treatment over a series of weeks and months, and reached a point at which their death becomes inevitable. At that point, they often do—certainly in my family experience—express a desire to know how they can control their own death. Surely a doctor has to be allowed to evolve that conversation over the period of treatment.
Dr Opher
I completely agree. Interestingly, I am on a journey here. To begin with, I thought these were good amendments. I thought that we must not introduce certain things—the doctor being a powerful person and so on. I then asked a lot of my colleagues, and they said, “No, no—we’ve got to clarify the law. We do not want this blurring of the law.” I have actually moved in the other direction, and I think it is essential that we do not bring in these amendments. As my hon. Friends said, the BMA has support the subject being raised and there have been changes to the law in Victoria because the gag clause simply does not work. We need to protect patients and, in my opinion, these amendments are not a good way of doing that. The hon. Member for Solihull West and Shirley made such a compelling argument against those amendments, so I will not go on about them.
On Amendment 278, I actually agree with the Member for East Wiltshire, but probably for different reasons. Again, if we introduce the amendment, if the doctor does not see that a patient has said that they do not want assisted dying and they bring it up, the Bill will potentially criminalise their behaviour. I feel that would not work and it would complicate the law.
I agree with amendments 319 and 320, tabled by my hon. Friend the Member for Bexleyheath and Crayford, which concern age. They would be a good and—alongside his amendment 339—functional change to the Bill.
Amendment 270 is about psychological assessment. As far as I can read in the Bill, as part of the panel process, which we have not yet discussed, there will be a psychological and psychiatric assessment of the patient. Also, when assessing someone with a terminal illness, most doctors will assess their mental health.
Terminally Ill Adults (End of Life) Bill (Sixteenth sitting) Debate
Full Debate: Read Full DebateKit Malthouse
Main Page: Kit Malthouse (Conservative - North West Hampshire)Department Debates - View all Kit Malthouse's debates with the Department of Health and Social Care
(1 year, 5 months ago)
Public Bill CommitteesI apologise for having arrived ever so slightly late, Mr Efford. In the Minister’s view, is it conceivable that he or any future Minister—or, indeed, the current or any future chief medical officer—would not consult with groups representing those with Down’s syndrome in drawing up the various guidelines on the Bill?
Extensive consultations have taken place with all the key groups and advocacy organisations on Down’s syndrome in the drafting of the guidance. The guidance is very close to publication; once it is published, it will form the basis of a further consultation. It is an iterative process.
Perhaps I was not clear. I meant the guidance on this Bill. Although the Minister may not necessarily be able to say what will be in it, is it conceivable that the CMO, in drawing up guidance as a requirement under the Bill, would not consult Down’s syndrome groups? My point is that, given what has been expressed and the desire of the Committee, I cannot see that a CMO would not talk to Down’s syndrome groups in any event.
I thank the right hon. Gentleman for that clarification and apologise for my misunderstanding; I thought he was referring to the guidance that we are currently working on under the terms of the 2022 Act. Yes, absolutely: the Bill currently specifies a two-year commencement period, within which a whole range of operationalisation work will need to be done. All of that will need to be consulted on; we will not do it all in an ivory tower from Whitehall or Westminster.
Absolutely. This is about professional judgment, which is what the BMA is really clear about. Doctors have to be able to use their professional judgment. They are not under any obligation to raise the issue, but they are not under any obligation not to raise it. The BMA is really clear about that. I thank my hon. Friend for his intervention.
I welcome amendments 319 and 320 from my hon. Friend the Member for Bexleyheath and Crayford and I thank him once again for his positive engagement with the Bill. He raises a very valid point about the initial discussion. While the Bill is very clear that it applies only to terminally ill adults over the age of 18, in that someone would have to be over 18 to make the first declaration, it is not clear that the initial discussion could also not happen with someone under the age of 18.
We should not prohibit open conversations with terminally ill young people and their families, as they create openness, transparency and safeguards and provide much-needed support at what most of us can only imagine must be the most difficult time of anyone’s life. However, I think it should be made clear that the actual assisted dying process cannot be embarked upon unless someone is over the age of 18. I have taken advice about how best to incorporate that into the Bill from a drafting perspective. As a result, I have tabled amendment 418, which applies to clause 5, and states that regulations must provide that the first declaration contain, among other things,
“a declaration that they have had a preliminary discussion with a registered medical practitioner, that they were aged 18 or over when they had that discussion, and that they understand the information referred to in section 4(4)(a) to (c) that was provided during that discussion”.
As such, the aim of amendments 319 and 320 is achieved. I hope that that is to the satisfaction of my hon. Friend the Member for Bexleyheath and Crayford.
With regard to amendment 339, I have listened very carefully to the concerns of my hon. Friend the Member for Bexleyheath and Crayford, who tabled it, and the evidence from Mencap chief executive Dan Scorer, who suggested that for terminally ill people with learning disabilities
“that initial conversation has to be incredibly well supported and structured…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”. ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 280.]
I absolutely agree with the intention of the amendment. I am seeking advice on the legal and technical implications, as I believe there is some tightening up that would need to be done around some of the phrasing, such as the concept of “sufficient time” or what would constitute a “supporter”. I therefore cannot support the amendment as it stands, but I am very happy to look at ways to take this forward and to meet my hon. Friend to discuss the amendment, which, quite rightly, gives special consideration to people with autism and learning disabilities. I know that my hon. Friend the Member for Penistone and Stocksbridge is also considering tabling amendments that would have a similar effect; perhaps we could all meet together.
I also reassure my hon. Friend the Member for Bexleyheath and Crayford that I am considering the involvement of people with learning disabilities, and groups representing them, in the development of guidance and training on assisted dying and end-of-life conversations. As Dan Scorer said,
“people with a learning disability should be involved in the development of that guidance” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 281.]
I absolutely agree.
Amendment 368, tabled by the right hon. Member for East Hampshire, has been discussed this morning. I sought advice about it as it was new to me. I believe that no statutory guidance has yet been published under the Down Syndrome Act, so we lack detail. That Act resulted from another private Member’s Bill; I am sure we can all agree what an excellent process this is for making important changes to the law. As the Minister said, the amendment is likely to be unworkable for doctors so I cannot support it. I would, however, be very happy to discuss the thoughts of the right hon. Member for East Hampshire and look at how we can meet his objectives—possibly through an addition to new clause 8, which is about the duty to consult and the Secretary of State consulting with the Equality and Human Rights Commission. At that point, the specific needs of not just people with disabilities but those with other protected characteristics will be represented. Alternatively, we could look at the codes of practice in clause 30.
I am happy to take those discussions forward and may even be able to speak to the right hon. Member for East Hampshire at the drop-in session he is doing this week with the National Down Syndrome Policy Group, ahead of Down’s Syndrome Awareness Week.
As the hon. Lady will know, a number of our proceedings have been misinterpreted, shall we say, on social media. For complete clarity, with regard to the initial conversation, the Bill leaves to the discretion of the doctor whether it is appropriate to raise the matter, given their knowledge of the patient. They have no obligation to raise it. If the patient themselves indicates a wish to raise the matter, then a doctor is under an obligation to lay out all the options available to that patient. We would not want to leave the outside world with the impression that, in all circumstances, the doctor is obliged to raise the option of assisted dying. It is only when they professionally think it is appropriate or if the patient raises it with them.
The right hon. Gentleman is absolutely right. As I have said, the BMA has been very clear that doctors should use their professional judgment. For example, if they had a patient whom they knew to be deeply religious and who had no interest whatsoever in an assisted death, it is highly unlikely that they would raise the possibility. It is up to them to use their professional judgment to accommodate the wishes of the patient. It has to be a patient-centred approach.
The Chair
With this it will be convenient to discuss the following:
Amendment 285, in clause 4, page 2, line 28, leave out paragraphs (a) to (c) and insert—
“(a) the person’s diagnosis and prognosis, in consultation with a specialist in the relevant illness, disease or medical condition,
(b) any treatment available and the likely effect of it, in consultation with a specialist in the provision of such treatment,
(c) any palliative, hospice or other care, including symptom management and psychological support, in consultation with a specialist in palliative care.”
This amendment ensures that a specialist carries out the assessment of the patient, the treatment options available and the palliative care options available, since these may not be known to a doctor coordinating an assisted death.
Amendment 343, in clause 4, page 2, line 28, at end insert
“, including any relevant probabilities and uncertainties surrounding the person’s diagnosis and prognosis.”
This amendment would make clear that the doctor conducting an initial discussion is required to discuss the probabilities and uncertainties of any estimates of how long a person may have to live.
Amendment 344, in clause 4, page 2, line 29, at end insert
“, including the risks and benefits of such treatment, potential side effects, and the impact of the treatment on the person’s quality and length of life.”
This amendment would make clear that the doctor conducting an initial discussion is required to discuss the impact of any treatment available.
Amendment 275, in clause 4, page 2, line 30, leave out “any available” and insert “all appropriate”.
Amendment 108, in clause 4, page 2, line 31, at end insert
“and offer to refer them to a registered medical practitioner who specialises in such care for the purpose of further discussion.”
This amendment would require the doctor who has an initial discussion with a person about assisted dying to offer to refer them to a specialist in palliative, hospice or other care.
Amendment 183, in clause 4, page 2, line 31, at end insert—
“(and, accordingly, such a preliminary discussion may not be conducted in isolation from an explanation of, and discussion about, the matters mentioned in paragraphs (a) to (c)).”
This amendment emphasises that the initial discussion mentioned in subsection (3) may not be conducted without also explaining and discussing the matters mentioned in subsection (4).
Amendment 425, in clause 4, page 2, line 31, at end insert—
“(4A) Where a person indicates to a registered medical practitioner their wish to seek assistance to end their own life in accordance with this Act, they must be referred to a multidisciplinary team to explore options for relevant care and support.
(4B) The Secretary of State may by regulations specify the requirements for the multidisciplinary team under subsection (4A).
(4C) The regulations must include a requirement for the multidisciplinary team to include all of—
(a) a registered medical practitioner or registered nurse,
(b) a person registered as a social worker in a register maintained by Social Work England or Social Work Wales, and
(c) a practising psychiatrist registered in one of the psychiatry specialisms.”
Amendment 53, in clause 7, page 4, line 8, at end insert—
“(ca) has relevant and available palliative care options.”
This amendment would mean that someone is only eligible for assistance in ending their own life under this Act if they have relevant and available palliative care options.
Amendment 54, in clause 7, page 4, line 17, leave out “(g)” and insert “(h)”.
This amendment is consequential on Amendment 53.
Amendment 426, in clause 7, page 4, line 26, at end insert—
“(4) The coordinating doctor may not take the steps set out in subsection (3) unless they receive confirmation from a multidisciplinary team that the person has had a meeting with that multidisciplinary team as specified in section 4.”
Amendment 286, in clause 9, page 5, line 36, leave out paragraphs (a) to (c) and insert—
“(a) the person’s diagnosis and prognosis, in consultation with a specialist in the relevant illness, disease or medical condition,
(b) any treatment available and the likely effect of it, in consultation with a specialist in the provision of such treatment,
(c) any palliative, hospice or other care, including symptom management and psychological support, in consultation with a specialist in palliative care.”
This amendment ensures that a specialist carries out the assessment of the patient, the treatment options available and the palliative care options available, since these may not be known to a doctor coordinating an assisted death.
Amendment 424, in clause 40, page 23, line 37, at end insert—
“‘preliminary discussion’ means a discussion of a kind mentioned in section 4(3);”.
This is a drafting change.
On a point of order, Mr Efford. I seek your guidance on the votes that we have just taken on the last group of amendments. If any Member, or any external person, were to attempt to misrepresent part of the debate on those amendments, what could we do? For example, in respect of amendment 368, tabled by my right hon. Friend the Member for East Hampshire, with regard to people with Down’s syndrome, somebody could imply or state on social media that the Committee has refused to look at accommodations for those people, therefore disregarding their welfare under the Bill. As you will be aware, that would be a serious misrepresentation of the debate and the intention of the Committee. If a Member of the House or somebody external did that, what measures could we take to correct it?
Terminally Ill Adults (End of Life) Bill (Seventeenth sitting) Debate
Full Debate: Read Full DebateKit Malthouse
Main Page: Kit Malthouse (Conservative - North West Hampshire)Department Debates - View all Kit Malthouse's debates with the Department of Health and Social Care
(1 year, 5 months ago)
Public Bill CommitteesAlthough these provisions may seem irrelevant to the Bill—I do not think any of us wishes to see the creation of an assisted dying agency—I am nevertheless grateful to my hon. Friend the Member for Runnymede and Weybridge (Dr Spencer) for tabling them. He is playing his usual role of keeping us honest.
It is extraordinary that nowhere does the Bill lay out exactly how the assisted dying service would be delivered—whether it would be an NHS service, a private service or some mix of the two. I am therefore grateful to my hon. Friend for being clear in his suggestion that it should be a non-NHS service and that, if we are to pass this law, we should establish a bespoke agency for the explicit purpose of delivering that service. It is a rather macabre but logical way of delivering on the proposal in the Bill.
The fact is that many doctors, faced with the prospect of being asked to participate in assisted dying, have expressed their preference for it to be delivered outside the NHS. In its written evidence, the British Medical Association, which has been cited a number of times today, says:
“There is nothing in the Bill about how an assisted dying service might be delivered, although the possibility of a separate service is mentioned in the explanatory notes.”
The BMA’s view is that assisted dying
“should not be part of the standard role of doctors or integrated into existing care pathways”.
I stress that point, because it has often been suggested in the course of debate that the way assisted dying will work will be as part of a holistic range of options—pretty indistinguishable from palliative care or other treatment options put before patients. The BMA is clear that assisted dying
“is not something that a doctor can just add to their usual role.”
The Royal College of General Practitioners has also pointed out in evidence that the shape of the service is not set out in the Bill.
On a point of order, Mr Dowd. In his opening sentence, my hon. Friend said that none of us wanted to see the creation of an assisted dying agency. My interpretation of our speaking to a particular amendment is that we have to address what it intends to do in the Bill. My hon. Friend said that he does not want what the amendment intends and that he is speaking more generally about the delivery of the service. Could we have your guidance as to whether that is in order? One of our problems is that we are having very expansive debates, and previous Chairs have sought to keep everyone in order. I am anxious that my hon. Friend does not exhaust himself by straying from the central point in the amendment.
The Chair
The fact of the matter is that the hon. Member does not have to agree with the amendment, so he is perfectly entitled to speak in that regard.
I am grateful to you, Mr Dowd, and to my right hon. Friend for his concern for my welfare, which is much appreciated. However, he will be relieved to know that I have plenty of energy and can keep going.
To speak seriously, it is very germane to the Bill that the amendments are considered. As I was explaining, GPs and other medical practitioners have been concerned about the absence from the Bill of clauses to specify the delivery of the service, so I am grateful that we have this opportunity to discuss that and to hear from the Minister and the sponsor how they imagine the Bill would operate and whether it would, indeed, be appropriate to establish some kind of agency along the lines proposed. The reason I object to an assisted dying agency is that I object to assisted dying, but I see the logic of the proposal if we are to proceed with the principle of the Bill.
It is extraordinary that this crucial question is not set out. In his evidence to us, Chris Whitty said rather airily that it was for Parliament to decide how the service should be delivered. I would stress that most medics involved, particularly in palliative care and care for people at the end of life, are very hostile personally to the suggestion that they should participate in assisted dying. The BMA’s 2020 survey of its members found that 76% of palliative medicine doctors would be unwilling to participate if assisted dying were legalised. The Royal College of Physicians 2019 members’ poll found that 84% were opposed.
The Chair
If the right hon. Gentleman wishes to make a point of order, he should feel free to make a point of order.
On a point of order, Mr Dowd. I am grateful to you, and I am sorry to interrupt. I do not mean to be rude, but I cannot see how this is germane to the amendment. We have a lot of amendments to deal with in detail, and expanding the debate into a wider one about whether the medical profession agrees with assisted dying does not seem to me to address the question of whether we should include the amendment in the Bill, which is what we are here to decide.
The Chair
The right hon. Member is perfectly entitled to express his view, and I respect it. I will make a judgment in due course as to whether the hon. Member is stepping outside the latitude of the issue. He will no doubt bear in mind your intervention and my response to it.
I, too, am grateful, Mr Dowd. I stress that I am discussing the suggestion in the amendment that assisted dying be taken out of the NHS and not be part of the normal pathways doctors are invited to participate in. It strikes me as relevant that most doctors, were the law to be passed, would wish for something along the lines of the amendment to be included.
We do not know exactly how that would work. We know that it could potentially be private, according to the scheme set out in the amendment, or it could be within the NHS. We know from the references in clause 40 that private provision is envisaged, because of the talk of reasonable remuneration for the provision of services. So it would be outside the normal service expectation of medical professionals employed by the NHS; indeed, we know that it could be a lucrative market.
Juliet Campbell
I will speak to amendments 125 and 126, which are linked to new clause 7. Given the discussion we have just had, and given that amendment 341 has been made, I will not push amendment 125 to a vote. Amendment 126, however, provides that any medical practitioner who wishes to provide assistance under the Bill must have opted in to a register or a service for practitioners who are comfortable with providing care related to assisted dying. In other conversations, my hon. Friend the Member for Spen Valley has said that the opt-in model is provided within the Bill. The challenge is that it is not explicit in the Bill, and I would like to see it so.
The BMA wrote in its evidence to the Committee:
“The Bill should be based on an ‘opt-in’ model, so that only those doctors who positively choose to participate are able to do so. Doctors who opt in to provide the service should also be able to choose which parts of the service they are willing to provide (e.g. assessing eligibility and/or prescribing for eligible patients)…An opt-in model is not explicit in the Bill…We urge the Committee to make it explicit in the Bill that this is an opt-in arrangement for doctors.”
The BMA says that it wants it explicit in the Bill, and at the moment it is not. The Royal College of General Practitioners aligned with this viewpoint, stating that an explicit opt-in system is completely necessary in the Bill. It is my hope that members of the Committee will support amendment 126, which I intend to push to a vote.
I am afraid that I will disappoint the hon. Lady by rising to oppose her amendments, although I understand why she has tabled them.
It was clear from the BMA’s evidence that it opposes the creation of a list of registered providers, which the hon. Lady proposes to create with these amendments. The BMA’s opposition and my opposition are based on two or three—
Juliet Campbell
Based on the fact that we agreed on amendment 341, I am prepared not to press amendment 125 to a vote. It is amendment 126 that I am proposing.
I understand that, but amendment 126 also refers to a register of appropriate medical practitioners being maintained. Of course, new clause 7 would similarly create such a list. We are debating all three proposals, so I wanted to explain why I oppose them, as indeed the BMA does.
As has been outlined in previous speeches, the Bill creates an opt-in model effectively, whereby people who want to be the co-ordinating doctor or indeed the second doctor have to opt in and be trained, and therefore become accredited, so by definition they would be approved for that service.
However, the Bill does not envisage that the initial conversation is necessarily with the co-ordinating doctor. There might well be other medical personnel or practitioners—we have talked a lot about semantics in this debate—who are presented with the situation where a desperate person, somebody who has been given some extremely bad news, wants to talk about their situation and what their options might be. We hope and believe that training will spread throughout the NHS to those who want it. Nevertheless, we have to leave open the option that someone may not be accredited and that they may need to pass on someone, by whatever means the Bill determines, to a doctor who is accredited, who can act as the co-ordinating doctor, who has had the appropriate training and opted in, and I am afraid the register would not allow for that.
The second thing that concerns me slightly, and which we need to avoid for the benefit of both the patient and the system, is any kind of “doctor shopping”—the notion that there is a list of doctors that I can shop around and choose from. I worry slightly about that.
My hope is that these types of conversations, which are necessarily private and sensitive, will take place in an environment of embrace and familiarity between doctor and patient. We have talked a bit about whether doctors have to refer or provide information—obviously, we have just accepted an amendment that seeks to set out how that will work. What I would oppose, for two reasons, is the creation of a list that people can move up and down on, and pick somebody they like the look of, or who they think might be handy for them. First, I am not sure that it would be entirely reputable; secondly, we have to remember who we are dealing with here. These are dying people who may not have long left to live—we are talking about six months as a minimum, but actually they might have only two or three months to go. We need to create a sense that this is something that will be provided to them in an environment that is familiar. They will not have to spend their time finding a doctor on a list, and their phone number, then ringing up their office and saying, “This is what I want to do. Can I make an appointment?” There is a privacy aspect to it.
My third objection is, to be honest, about privacy—not just that of the patient, but that of the doctor. The hon. Lady will know that unfortunately—I do not know whether she thinks it is unfortunate, but I do—there are some people who object so strongly, for example, to abortion that they are willing to go and protest outside clinics that provide that service. This House has legislated to balance the rights of those who want to avail themselves of that service and those who want to protest. That has been a source of conflict.
I am afraid that a public list of doctors who provide this service would raise questions about the privacy of doctors, about patient privacy and about access to that service. I am concerned about it from that point of view.
We do not necessarily have specific registers. People are members of professional bodies, and within those professional bodies, people become accredited because of their training. As the Minister referred to earlier, there is no such thing as a list of palliative care specialists; it is not defined in that way. Creating a list in this way would present problems for the privacy of doctor and patient as they go about what I hope we all acknowledge is a very sensitive and private process at the very end of someone’s life. I will conclude at that point and say that, unfortunately, with great respect to the hon. Member for Broxtowe, I oppose these amendments.
I rise to support my amendments in this group, which seek to clarify the details that must be included, under regulations, in the first declaration, and the report that is consequent on that declaration. While I believe it was useful on Second Reading for MPs to be aware of the content of the form that the doctor should complete, the advice I have received—with which I agree—is that the details are more appropriately a matter for regulations. There is always a balance to be struck, but it would not be reasonable to expect the House to have to consider changes in primary legislation simply to alter the contents of a declaration, important though the details are.
The proposed changes go further in a way that I believe should greatly reassure the Committee. As we discussed this morning, they make it clear that a person must have been over the age of 18 when the first discussion under the Bill took place. They also require doctors not just to make formal declarations, but to produce reports covering the eligibility of the person to request assistance, the nature of the assessments they have made, their discussions with that person and, crucially, the person’s understanding of those discussions and of what the process entails. This will ensure that all the relevant discussions have been recorded and understood, and that an account of them has been recorded and will be available for future reference. For reporting purposes, if a person applying for assistance is found not to be eligible, that information will be recorded too. I hope the Committee will agree that further safeguards will be put in place as a result, without imposing additional stress or burdens on terminally ill patients during such a different period.
I rise to speak in support of amendment 184 and to point out that I have now withdrawn amendments 329 to 334, so we will not vote on them later. Like the hon. Member for Spen Valley, I had thought that although it was sensible at Second Reading to have schedules to the Bill that laid out the forms, they were quite limited and strict in their form, so we needed more flexibility and the opportunity for the House, by regulation, to add content to the required forms in the future. I also wanted to insert a declaration by the person that they had had an initial conversation covering all the factors in the Bill and, critically, that they understood the information that had been presented to them. Amendment 184 would do exactly that.
For Members’ reference, I tabled similar amendments that would have done the same with the other schedules. Following conversations with the hon. Member for Spen Valley, I have now withdrawn them all and amalgamated them into amendments that would do the same as those that she has tabled, along with some additional bits and pieces. Amendment 184 is relatively self-explanatory.
I want to speak against amendment 277, which would impose a time limit of 28 days between diagnosis and the first declaration of a terminal illness. In a lot of circumstances, that would be a very difficult time delay for people to face. As the hon. Member for Bradford West, who tabled the amendment, will know, there are already periods of reflection in the Bill, although it also contains provision for a compressed time limit for those who face imminent death. Particularly for those who are unfortunately diagnosed with certain diseases, adding 28 days will insert a delay at a time when people who are facing what they do not want to face—a horrible death—need as much time as they can to get through the process. For example, if we take together all the factors for people who are sadly diagnosed with pancreatic cancer, the median survival is six to 12 months.
I do not know if the hon. Lady knows this, but pancreatic cancer is a particularly unpleasant cancer, not least because it does not exhibit symptoms in its early stages—people do not know they have it until quite late in its development. Treatment for it is not well advanced, and many people diagnosed with pancreatic cancer sometimes have only weeks to live. The idea that we should make them wait 28 days before they can even start the process seems impractical and, I am sorry to say, cruel to them in many ways. It is worth remembering that this is not a six-month “bang, I go and do it.” Most people who have a terminal illness will begin the application process at six months. Once they have the ability to ask for this service, they will then wait until they decide that their life has come to its end, at the time and place of their choosing. That might be at six months, or it might be at six days. The point of the Bill is to put the power to make that decision in their hands. Although the Bill has periods of reflection—it recognises that people need to sit and think about these things—imposing an absolute 28 days on everybody, without accounting for what stage they are at in their disease and how long they have to live, is not necessarily a sensible amendment, and I will oppose it from that point of view.
I understand the objective of my hon. Friend the Member for East Wiltshire in tabling amendments 403 and 404, which are about informing family. I would hope that those are the sorts of discussions that doctors would have—perhaps one of the doctors on the Committee can tell us. On whether we should put that on the face of the Bill, I have been persistent in trying to make sure that the conversation is not guarded. The amendments ask whether I have any family—I am not quite sure what “family” means. Does it mean my children? Maybe I do not want to tell my children. Does it mean my next of kin? I do not know. Is it distant relatives? Is it my whole family? There are problems with the definition of “family”.
While I will not support the amendment, I understand what my hon. Friend was trying to do. I would hope that those are the kinds of sensitive matters that a doctor would tease out of an individual as they look for the various items that we have put in the Bill to make sure that the person is making the decision on a sound basis as a settled view and has the capacity to do so.
I rise to speak to my amendment 277, which would add a new subsection to clause 5. Like my amendment 276, it would alter the time that must elapse between a person receiving a diagnosis of severe illness and their discussion of assisted dying with a medical practitioner. To put the most important point first, the amendment aims to prevent people opting for assisted dying while they are suffering from the initial shock of having a serious illness diagnosed, by imposing a pause. There would have to be 28 days between when a person receives a diagnosis and prognosis of the illness that might end their life within six months, and when they could have their second consultation with a doctor about assisted dying.
The right hon. Member for North West Hampshire asked me whether I was aware of pancreatic cancer. A dear friend of mine, who was known as the “king of curry” in Bradford, told me only in June—the day I launched my election campaign, funnily enough—that he had been diagnosed with terminal cancer. In October, he was gone. I am overly familiar with pancreatic cancer and how fast he went down from being a healthy individual. He is greatly missed in Bradford.
The Committee has already rejected amendment 276. I ask all Members to think again and in particular to consider the evidence given to us by several distinguished doctors, including senior psychiatrists. What those doctors said to us, in both written and spoken evidence, was that immediately after someone receives a diagnosis of serious illness they often experience a major increase in depression and a desire to hasten death. For some patients, that desire to hasten death is what psychiatrists call an increase in suicidality; that is, the patient wants to actively do something to end their own life. For other patients, they do not have an active desire to carry out a physical act to end their life, but they do wish that their life would end sooner.
We can all empathise with people who have just received such a shocking diagnosis and prognosis. They have been told that they are likely to die soon. They may also either have been given information that makes them think their remaining months of life will be degrading and painful, or they may assume that they will be. That might well be how many of us would think if we had such devastating news. But the psychiatrists who gave evidence also said that depression and a desire for death are often not permanent conditions for people who have received such a diagnosis. When a patient gets treatment for their physical symptoms plus social care, and if necessary psychological treatment, the desire to hasten death will often fall.
Let me refer to the evidence of Dr Annabel Price, vice chair of the Royal College of Psychiatrists Liaison Faculty. I appreciate, Mr Dowd, that I am repeating some things I have mentioned previously, but when I spoke previously with reference to this evidence it was to other amendments. Hence, I am having to repeat it for the purpose of this amendment in particular. She said:
“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.”
She said that there were a number of factors besides depression that were associated with the wish to hasten death. In those who had received a diagnosis of serious illness, she told us:
“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.”
For patients who have all those factors, she said:
“These things can all come together to make life feel very unbearable.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 275, Q359.]
Perhaps the most important part of Dr Price’s evidence was when she said what good medical and social care could do for people who felt their lives were unbearable. She said:
“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.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 281, Q369.]
On a point of order, Mr Dowd. I am very sorry, but I just want your guidance. The hon. Lady is giving a speech which I am afraid we have covered before. We have had extensive debates on the impact of terminal diagnosis on people’s mental health and depression. I just want your guidance on what the Committee should do to resist the temptation to repeat debates that we have already had extensively, while we are considering these amendments.
The Chair
I thank the right hon. Gentleman for that point of order. I reiterate the point I have made on a number of occasions. I do not want to interrupt Members when they are making a point, because we are in a very sensitive situation—of that there is no doubt. I exhort Members, when they are discussing these things, to bear in mind those factors and those issues.
Just to be clear, a number of the amendments the Minister mentioned are in my name; I have now withdrawn them, albeit they would not have been voted on until later stages. I have withdrawn them in favour of the amendments tabled by the hon. Member for Spen Valley, which broadly do the same thing.
I thank the right hon. Gentleman for that clarification, because I had heard he was withdrawing but I thought perhaps he meant he would not push him amendments to a vote.
The Chair
Order. As far as I am aware, they are still on the amendment paper, but let us not get too technical at this particular stage.
Terminally Ill Adults (End of Life) Bill (Eighteenth sitting) Debate
Full Debate: Read Full DebateKit Malthouse
Main Page: Kit Malthouse (Conservative - North West Hampshire)Department Debates - View all Kit Malthouse's debates with the Department of Health and Social Care
(1 year, 5 months ago)
Public Bill CommitteesMy amendments state that if a medical professional is paid for delivering assisted suicide, the money they receive should be transparent. The answer is therefore the former.
I do not propose any cap. If we end up with a private service, although the hon. Member for Spen Valley has just told us that we will not, it might be appropriate to create a scale of charges. My suggestion is that we need absolute clarity. I also think we should use the affirmative procedure to approve the regulations on the transparency of finances. This should be something that Parliament expressly approves.
My interpretation of what the hon. Member for Spen Valley said is that, as long as the service is available on the NHS, it is up to me whether I go private. In such circumstances, I could have it on the NHS if I really wanted. If I chose to go private, as I might if I were having a baby at the Portland hospital or cosmetic surgery at King Edward VII’s hospital in Marylebone, why would my hon. Friend the Member for East Wiltshire want to know the private arrangement between me and my physician?
I am grateful for that clarity, although we now seem to be less clear than we were. I understood the hon. Member for Spen Valley to be saying that there will not be private provision, but my right hon. Friend is saying that there may be.
Terminally Ill Adults (End of Life) Bill (Nineteeth sitting) Debate
Full Debate: Read Full DebateKit Malthouse
Main Page: Kit Malthouse (Conservative - North West Hampshire)Department Debates - View all Kit Malthouse's debates with the Department of Health and Social Care
(1 year, 5 months ago)
Public Bill CommitteesI thank my hon. Friend for that intervention. She makes a very good point. It is definitely something that needs to be explored, to ensure that people are not being excluded for the reasons she set out. It is a different example, but when voter ID was introduced a special ID card was created by the Government to cater for exactly the situation she set out. We have to find a way of ensuring that people are not excluded because of that technicality. She makes a valid point.
Scanning back through my experience of the health service, I do not remember ever having to show my ID, whatever the procedure or medical service. I do not remember showing ID to witness the birth of my children or my wife having to show her ID. I am not sure that is common in the health service. Why would we introduce it for this? I can go in and have a heart bypass and not be asked to show my ID. My assumption is that often people will have been—
There is no rule that can be applied universally in the abstract. All rules take their value from how they are introduced. On the hon. Gentleman’s hypothesis, I do not in principle suggest that every new treatment and every new obligation that is created in the NHS should require laws determining how clinicians prioritise them. In the case of a new service—I am trying not to use the word “treatment”, because I do not accept it as such, but it sounds like it will be treated as an NHS treatment—that is very significant and whose resource implications are unknown, it strikes me as appropriate that, as far as possible, we should be clear that doctors should manage the resource demands placed on them by the Bill in the context of their other obligations to patients.
Can my hon. Friend not see that, as the hon. Member for Rother Valley said, the amendment is based on what could be construed as an offensive assumption: that doctors otherwise might or would? Effectively, it is the legislative equivalent of the “When did you stop beating your wife?” question.
I am afraid to say that we do impose obligations on doctors to do the things that we expect them to do. If that is offensive to doctors, so is all the guidance from the General Medical Council. It might well be argued that the amendment is otiose, because of course we would expect doctors to manage their resource requirements appropriately and to consider other patients. Nevertheless, the point that is being made in defence of the amendment, about which I feel strongly, is that we are creating a new service with unknowable resource implications, with strong parliamentary backing behind it, and with a whole set of guidance that will be created ex nihilo by the Secretary of State and that Parliament will have little control over.
Because we have not seen the amendments on the design of the service, we do not even know what the service will involve and how much work it will take. It is therefore appropriate to specify explicitly that doctors have an obligation to consider the potential impact on other patients.
I understand where my hon. Friend is coming from. To give us fair warning, if the Committee votes the amendment down, how will he portray that publicly? Will he say to the public that the Committee has voted for doctors to harm other patients?
As I understand it, I do not think if someone is donating an organ that they do actually have to see a psychiatrist; they have to see somebody who is an appropriately trained assessor from the Human Tissue Authority. To me, that sounds equivalent to the second doctor in our process—someone who is appropriately trained to assess patients and what they need to do. This talk of it having to be a qualified registered psychiatrist, compared with an organ donation, is incorrect.
Dr Opher
I completely agree with the right hon. Gentleman. By amending clause 12 to include social workers, who specialise in spotting coercion, there would be a psychological component in that panel. I emphasise that the first two doctors are trained in psychological assessment—they have to be to become a doctor, and we must respect their knowledge and decision making. Psychiatrists will be incredibly useful in difficult cases of capacity, but using them in every case would not be using them in the best capacity.
Is the hon. Member aware that in nine of the 10 cases that went before the Court of Protection, the young ladies were deemed not to have capacity, but the judge still decided that it would not be in their best interests to feed them, and they were put on palliative care pathways?
I am grateful for that intervention and, dare I say it, for the one from the right hon. Gentleman. That is the whole point about eating disorders: there is a very fine line to be trod between people who have capacity, people who lack capacity and people who have capacity but who can still be allowed to make an unwise choice, which is obviously a huge risk for people with eating disorders. I find that risk very much magnified in the Bill as it is currently drafted, which is why it is of the utmost importance that it provides specifically for the possibility that somebody is suffering from any kind of mental health illness, and particularly from an eating disorder—but I do not see such a provision at the moment. I heard the arguments that were made when I raised this issue in earlier sittings, and I very much welcome amendment 6, but it deals only with capacity; it does not talk about mental illness.
To conclude, amendment 363 is a crucial safeguard that would prevent assisted dying from becoming an unintended route for people suffering from mental health conditions, such as eating disorders, to end their lives prematurely. It would ensure that requests for assisted death are based on genuine, rational decisions, rather than symptoms of a treatable disorder. By aligning with best practice from other jurisdictions and addressing a critical gap in the UK’s current approach, it would strengthen the ethical foundations of the assisted dying Bill and better protect vulnerable individuals.
Sorry—they did not have capacity, but the Court of Protection still ruled that they would be taken down the route of palliative care. This is not just a matter of capacity; in this instance, when we talk about mental health—before we even get to the capacity question—the issue is that anorexia is a recognised mental health condition. I beg to differ from my hon. Friend the Member for Sunderland Central on whether we have enough provision. We keep coming back to this issue time and again.
I want to be clear, because the hon. Lady and I have exchanged views on this issue: my recollection from reading the briefing—I am happy to go back to it—is that, in those nine cases, the girls were found not to have capacity, but the judge then took the decision not to force-feed them because force-feeding them was likely to be threatening to their health and might precipitate their deaths. I do not think it is quite right to say that the judges put them on a palliative pathway. They declined to force-feed them on the basis that they thought it was in their best interests and that force-feeding them might actually precipitate their deaths.
I thank the right hon. Gentleman for his intervention. When I came to this place, somebody said to me, “There’s the letter of the law and there’s the essence of the law.” As lawmakers, we make indications, and so do judges. By not opposing something, does that mean that by default we are supporting it? That is the question here for me. In those cases, those judges accepted—as he says—that those girls would inevitably die. Although the judges did not state that they put the girls on a palliative care pathway, by default, in my understanding, that was a palliative care pathway because it was accepted that those young girls were going to die by not being fed. It is just a matter of semantics for me.
I come back to the debate that we have just had. For me, the crux of the issue is that if someone has a mental health condition that then, by definition, becomes a terminal illness—regardless of the capacity conversation—this amendment surely strengthens the safeguard for them. By and large, this involves women who experience anorexia so this conversation is very gendered. I am happy to be corrected. That is all I have to say on the matter.
I rise to speak to amendment 55, in clause 71, page 4, line 33, leave out paragraph (a).
The amendment would ensure that the independent doctor has qualifications and experience in psychiatry or in assessing mental capacity. We have heard a lot in the debate about the importance of a holistic, multi-disciplinary approach to patient care at the end of life. We have also discussed the need for that to happen throughout the process and, in particular, during the crucial stages of the patient’s assessment. In the oral evidence sessions, we heard from Dr Rachel Clarke about the need for teams to be involved with patients throughout the process. By requiring the input of a psychiatrically trained clinician in the assessment by the doctors, we would be making explicit the expectation that assisted dying should adhere to the best practice, which we already see in end of life care in our country. We would also be bringing our practice into line with jurisdictions such as Oregon, which require referral to a psychiatrist, as has been discussed.
On a point of order, Mrs Harris. I do not think that the amendment is actually about qualifications or training. It is about the removal of certain assessments.
My right hon. Friend is absolutely right, I apologise. I am speaking to later amendments, so I apologise to the Chair and to the Committee.
On a point of order, Mrs Harris. I am sorry to raise this again, but I think my hon. Friend might not be on point. Amendment 56 is about detention under the Mental Health Act, not the training and standing of the doctors. He seems to be speaking to the qualification of the person, whereas the amendment is about the Mental Health Act.
The Chair
There are a lot of other amendments grouped with amendment 56. Does anyone want to move amendment 56 or shall we move on?
I rise briefly to oppose all four amendments, which seem to completely ignore the reality of what it is like to receive a terminal diagnosis and then die. In truth, from the moment someone is told that they have some horrible disease that is likely to kill them, their entire life becomes a contemplation or reflection on their mortality, frankly, and on the options that might be available to them. Although we have sought to strike a balance in the Bill by having periods of reflection between the various steps, we have to reflect on the fact that people will be thinking about these things all the time anyway. Although we might be going through the motions and hoping that they seek assistance and advice during that period, I guarantee that it will already be in the forefront of their minds.
These amendments—like so many from the hon. Lady from the beautiful city of York, the hon. Member for York Central—operate on the basis that people will show up at six months, enter the process at six months, do their three weeks of contemplation and then immediately take their lives, which is simply unrealistic and hardly ever going to happen. The vast majority of people will have been wrestling with their disease for months and often years before they get to the six-month period. If they are diagnosed with less than six months to go, which happens quite frequently, as we discussed in relation to pancreatic cancer yesterday, they will be immediately thinking not just about what their death will be like, but about the things they have to get done in that period—spending time with their family, the people they want to say goodbye to, the arrangements they want to make and the things they want to complete before they leave us. Imposing on people these arbitrary periods of reflection—the ones in the Bill are arbitrary, too—has to be balanced against the notion that these people have other things to do, and a hell of a lot more to think about than the bureaucracy we are trying to put in place.
The other thing to bear in mind, which the amendments do not take account of, is that disease progression is very rarely linear. I am sure the medics will tell us that there is often a period where a person thinks they are going to be okay, and then suddenly they fall off a cliff towards the end. Anybody who has been close to somebody with advanced cancer will know that they can be perfectly well and functioning until the last couple of weeks, or even days, before they suddenly decline and die. We need to design a system that satisfies the requirement for reflection, but also lets these people do what they need to do.
Although the hon. Member for Bradford West says that the amendments do not extend the amount of reflection time by that much, what in total they double it. It goes from 21 days to 42 days, which is a very significant proportion of the time that those people will have left to themselves—to sit, think, wait and go through the bureaucratic process. What most people will want to do is go through the process and secure permission, then take their time and think about what they want to do. They want to get on with their lives and to enjoy what is left because they lose the fear of what their ultimate end is going to be. Then, some weeks or months later, they can make the decision, if they wish to, to take their own lives, and we know that about a third do not because they are in palliative care.
Jack Abbott
On the point about almost doubling the time of the so-called reflection period, I think we have been very fixated on the Committee, and rightly so, on the six-month limit for the terminal diagnosis, but we recognise that for many people it will be much less than that. A reflection period of two months for someone with a terminal diagnosis of three months is a critical problem.
I completely agree. We have to strike a balance here. The point I am making is that, within an envelope of six months, 42 days is far too long, so I am afraid that I flatly oppose the amendments. They are based on a fundamental misunderstanding: the idea that people will just show up at six months, that their disease progression will be linear, and that they will then take the decision immediately, the moment they finish the reflection period. I can tell hon. Members that the entire six months, from the moment someone gets a six-month diagnosis, will be a reflection period.
I appreciate the right hon. Gentleman’s comments. He referred to the same thing twice, yesterday and today, and I just want to clarify it. He said that most people are ill for a while. I have a genuine question. I do not have the research, but my understanding, as a member of the public and a Member of Parliament, is that for many people who get a terminal diagnosis of six months, it will have been very sudden. Does he have any research to suggest that most of these patients will have been on the kind of trajectory he describes?
I depends on the disease, but many people will struggle with, for example, breast cancer for five years, go through repeated rounds of chemotherapy and undergo terrible operations to try to survive; then, there will come a point when the clinicians and oncologists say, “There isn’t much more we can do for you; we think you have a few months left to live, because there is no further treatment we can offer, so aggressive is your cancer.” Other people have cancer and are free of it within two or three months, because of the nature of the cancer. Some people will reach a six-month point suddenly—it will not be dead-on six months; it might be either side—and some people will be diagnosed with pancreatic cancer with two weeks to go. We have to strike a balance and be humane in what we impose on these people, who will have a lot more to think about than the regulations.
I want to explore that point a bit further. When I talk about a period of reflection, I am referring to the evidence that we have had from psychiatrists, who said that people’s abilities would be impacted in this situation. That is where the amendments are coming from. To come back to the previous point, is there any research or evidence that would back up the claim that many cases are longer-term illnesses, rather than people who have just got the diagnosis?
Maybe I was not clear: it depends on the disease. For example, the median survival range for pancreatic cancer is six to 12 months, because it does not exhibit symptoms; people only learn very late that they have it, and that is why the normal survival curve is quite a short one. We need to bear that in mind.
We also need to remember that the more we extend the periods of reflection, the longer people will have to live with the fear of what their death will be like, and with the nervousness about whether they will be allowed to control their own death—we are granting permission here. If I have to wait 42 days, that is 42 days out of whatever I might have left—perhaps 120 days, if I am lucky—that I am spending concerned about whether I am going to die in a particular way. To me, that seems crazy.
Two of the amendments propose extending the 48-hour period to seven days. These are people who have been told they are going to die within a month. They have less than 30 days to deal with their affairs, deal with their children, talk to their family and decide what they are going to do, and the amendments propose that for seven days of that, they will have to contemplate their fear of death, rather than rush it through. It is rushing it through in 48 hours—reflecting the fact that they are going to die.
The misunderstanding is most illustrated by the fact that amendment 314 proposes that, with the extension to seven days, there should be a mandatory referral to palliative care. With a month to go, these people are by definition already being palliated. The idea that somehow they are just waltzing up, unattended to, with a month to go, and that the NHS is going to say, “Actually, we’re not going to do anything to help you” fundamentally misunderstands what disease is like at the end of life. I am afraid that I vehemently oppose these amendments. The balance in the Bill is exactly right, and I hope that the Committee will agree.
Ordered, That the debate be now adjourned.—(Bambos Charalambous.)
Terminally Ill Adults (End of Life) Bill (Twentieth sitting) Debate
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Public Bill CommitteesThe Bill already sets out a number of things that a doctor has to assure themselves of, with regard to coercion and capacity. They would do that having had a significant amount of training to establish, in the round, after consulting others, that one way or another the legal requirements have been met. The “Why?” question appears to me to bring in a judgmental element—
Indeed: subjective, as the right hon. Gentleman said. That is the point that I am trying to get at. There is an objective assessment, which is wholly appropriate, but a subjective assessment would lead down a different route and muddy the objective assessment.
The hon. Member for East Wiltshire makes an important point. Where are the opportunities? When doctors are doing the assessment.
The other issue that speaks to me is the question of internalised bias. We will have professionals with subconscious bias or affirmed bias. They will be clinicians who have chosen or agreed to take part in the process; fundamentally, the majority of clinicians will not take part in this process because of their beliefs. It changes the relationship between doctor and patient from a societal perspective.
I know that a number of times I have been stopped during a process and asked a different question, and at times that opportunity for reflection—even without the pressure of knowing I have only six months to live—is of benefit to me. I am sure that others would benefit from it, too, particularly because the decision is so momentous. For that reason, I will certainly support amendment 468.
I thank my hon. Friend the Member for Spen Valley for tabling amendment 201. I have mixed views on it. I appreciate what my hon. Friend the Member for Luton South and South Bedfordshire said about medical records, especially when it comes to women and their past, but I also appreciated what my hon. Friend the Member for Ashford said about his experience from a mental health perspective.
I am still thinking about the amendment and I am not sure whether I will support it or not, but further thought needs to be given to the subject. There are the issues of mental health and women’s rights, but another issue applies, too. If someone has experienced trauma in childhood but that trauma has come out much more recently, even though it does not necessarily affect the decision at hand—whether to choose an assisted death—is there some kind of historical post-traumatic stress disorder that would then need to be explored? I do not have the answer, but I look forward to hearing the comments of my hon. Friend the Member for Spen Valley on that point. I would value hearing whether she has thought about that and what her understanding of it is.
Terminally Ill Adults (End of Life) Bill (Twenty First sitting) Debate
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Public Bill Committees
Daniel Francis
That is what I have wrestled with. That conversation will happen, and at the end of it, I accept that the autonomy is with the individual, who may well make a decision that they believe is for the best but with which their loved one does not necessarily agree. I think there are examples from overseas of that having happened.
I agree about the primacy of autonomy, but does the hon. Gentleman agree that, given the status quo and the many stories that we have heard about individuals who took their lives but kept it secret from their families, whether by going to Switzerland or by doing it in a horrible way in lonely circumstances, a regulated atmosphere would makes it more likely that people will talk to their family about what their death will be like and, as we have learned from overseas, make arrangements for their family to be around them, or at least to say goodbye, as they move into that process? At the moment, because this area is unregulated, way more people do it in secret than need to.
Daniel Francis
I am not entirely persuaded. I think there is currently a mixture of cases, and there will potentially be a mixture of cases in future. I hear what the right hon. Member says, but my primary concern is about the way things are. As I say, I am minded not to support the amendments on balance, but I am concerned that we could end up hearing stories about someone’s loved one of 50 years, or their child with a learning disability, having had an assisted death—and the first they knew about it was when it was too late.
Terminally Ill Adults (End of Life) Bill (Twenty-second sitting) Debate
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Public Bill Committees
Rebecca Paul
I welcome the hon. Lady’s intervention, but the point I am making is not about coercion; it is about the subtleties in families’ relationships. I was trying to bring to life a situation—sometimes it is families who understand the relationships, the dynamics and the pressure points. It is very hard for professionals to get underneath that.
In a sense, families are the greatest experts, but the process as drafted excludes that expertise. Under my amendment, if a family member had knowledge that could make the difference between life and death, they would be able to apply to the panel. If there had been a clear error in applying the eligibility criteria, the application would be reconsidered. It is true that the panel will be informed by at least one of the doctors and that it has the option of hearing from others. Perhaps the panel will always be incredibly thorough and explore every avenue, but we have to legislate for every situation, including situations that are not ideal.
We can learn a lot from other jurisdictions. In written evidence, the academic Christopher Lyon from the University of York describes his experience in Canada. Dr Lyon writes that his father, who was “openly suicidal” and had a “history of mental illness”, qualified for medical assistance in dying in 2021. In Dr Lyon’s words:
“He was classed as having a ‘foreseeable natural death’ (i.e., terminal illness), my family was told, because he had momentarily skipped some meals at his residence and had an elevated but unremarkable white blood cell (WBC) count that the AD doctor suggested might be an infection that, if untreated, might become lethal, despite being a common side effect of his arthritis medication.”
Dr Lyon says that when he was informed two days before the event, he pushed for an urgent psychiatric assessment to be carried out. Dr Lyon has obtained a copy and says that it is
“full of errors. It claims he wasn’t suicidal, when he had a whole history of suicidality. It states he didn’t think he was depressed, and yet on the list of medications there was listed antidepressants.”
Dr Lyon’s concerns about his father’s prognosis, the assessment and other aspects of the events were widely shared, he says:
“After he died, the provincial regulatory college, police, and even other AD clinicians suggested his death was questionable or even wholly unlawful. However, privacy law and the continuing resistance from the local health authority have so far succeeded in blocking access to his medical records necessary for a full investigation”.
In Ontario, meanwhile, the chief coroner has published a report detailing the assisted death of an anonymous patient, Mr A, who had inflammatory bowel disease. He was unemployed, dependent on his family for housing and financial support, and struggled with alcohol and opioid misuse. He received an assisted death on the basis that his illness was advanced, irreversible and causing intolerable suffering. According to the coroner, the family were not consulted by those involved with processing the application, even though it was recorded that the family expressed concerns. Most members of the death review committee thought that shutting the family out was a mistake. The committee concluded:
“Engagement with family and/or close relations in the MAiD process should aim to be a key component of MAiD practice.”
We can hope that these were exceptional events, but they are the kinds of situation in which a panel might have benefited from a family perspective, which is the reason why I cite them.
As my hon. Friend heard yesterday from the hon. Member for Rother Valley, there are multiple points in the new system at which family could make their views known. Indeed, they could apply very quickly for an injunction if they thought something was untoward.
My hon. Friend has talked a lot about families knowing best. Surely it should be the dying person who chooses how best to handle their family. The evidence overseas is that giving dying people choice about the manner and time of their death also gives them the choice about how to handle their family, and particularly their children. My hon. Friend might have a particular approach, and mine might be completely different, but I should have that choice. She seems to think the family know best for the dying person—how come she does not think the dying person knows best for their family?
Rebecca Paul
My right hon. Friend makes an important point. I do not think family always know best. There are situations where someone rightly will want to exclude their family from the process, and I totally respect that choice. I am saying that there will be other situations in which family do have something valid to input that could impact the panel’s decision making. My right hon. Friend also mentioned injunctions; I am keen to understand more about how that process works as a protection, so perhaps the Minister could respond on that, because that may well give me some reassurance. I will come to judicial review in a moment.
My right hon. Friend is right that this is not easy. I am not saying that family should be involved in all situations. I am saying there is a balance to be struck, and I do not think we are getting it right, because at the moment it is all about full autonomy. The working assumption is that input from family must always be ignored if the patient wants that. There must be a balance, and it is difficult to say where that should sit, which is why we have such an incredibly difficult job with the Bill.
Rebecca Paul
This is a really important opportunity to share all these examples. I have to be honest that I am not sure I see the relevance of how a case is funded, and I cannot speak on that person’s behalf. I am going to talk about some of the inequalities that come from this, because there will be people—we will come to this when we discuss judicial review—who will rely on legal aid to challenge a decision. If we do not get this right, we are in danger of creating a situation in which poor families cannot appeal and rich families can. That could give rise to the less than ideal situation the hon. Gentleman has raised. If we get this right and make sure that an appeals process is available on an equal basis to everyone in the country, that will prevent the kind of situation the hon. Gentleman has raised. I thank him for that, because he has helped to support the case for my amendment.
I have to say that my concern about the hon. Lady’s amendment is growing. We have talked in the past about policing the conversation and the process to the point that it becomes guarded. Say I had a strong, long-standing conviction that I wanted assisted dying if I was in extremis, but I had a child who I knew was violently against assisted dying; if the hon. Lady’s amendment were in place, and there was the possibility of appeal, surely my tendency would be to keep my disease and diagnosis, and my approach to the system, secret from that person. By opening this formal door, I would effectively be encouraged to conceal the process from a family member who I know may object.
I say that particularly in the light of the fact that, as we heard from overseas experience, coercion more often than not comes the other way. That is certainly what they see in Australia, where families try to persuade somebody not to do it. I think the hon. Lady has good motivations, but I am concerned that she might actually produce the opposite effect and drive people into secrecy.
Rebecca Paul
I thank my right hon. Friend for that alternative perspective. The appeal process is valid only if there is new and relevant information that the panel did not have. For someone who is absolutely eligible, nothing has been excluded from the process that would change their eligibility. There is nothing to worry about here, so I am not sure that I concur that my amendment would prevent sharing information. However, it would provide important protection when a bit of relevant information has not been shared with the panel, which I think is the greater harm. We are trying to weigh up the harms to make sure that they do not outweigh the benefits; I honestly believe that the amendment would help to balance the scales a little better.
Rebecca Paul
That comes under subsection (2) of my amendment:
“The Commissioner will allow the application for reconsideration if the Panel’s decision was—
(a) wrong, or
(b) unjust”.
It is implied that the decision is wrong because there is missing information. Missing information is one example; other things would enable an appeal, but the obvious and most likely reason in this instance would be that a certain bit of information had not been shared.
I am not saying that the amendment is perfect in any way. It is set out clearly in guidance on the private Member’s Bill process that amendments will not necessarily be drafted perfectly and that it is incumbent on the Government to take the spirit of what is intended and get the clause to an appropriate place to deliver that. I am happy to work with the Government to ensure that the wording works and is clear. I think the hon. Lady’s point may be that it is unclear; I am happy to work in any way to improve that clarity.
Through my hon. Friend, may I respond to the point made by my hon. Friend the Member for East Wiltshire? It is not necessarily about not having faith in the panel. Somebody may, for example, have a relative driven by a strong religious faith who wants to create some form of delay in the system, just to put off the awful day. Even if a commissioner were to take that relative’s application and decide that it was not valid, that would inject delay into what is naturally a time-limited process.
A person may want to retain the right to handle their family themselves, and have the choice about how to do that. If the state, rather than the dying person, is effectively deciding how the family should be handled, we are naturally giving that person an incentive to keep this thing quiet until they are ready to tell their family, which may be well towards the end of the process. As the hon. Member for Rother Valley said, there are multiple points at which the family can intervene if they know. My concern is that this kind of—what is the word we have been using?—embroidery actually drives people in the opposite direction to the one my hon. Friend the Member for Reigate wants to achieve.
Rebecca Paul
I thank my right hon. Friend for raising that point, because it gives me a wonderful opportunity to draw everyone’s attention to subsection (3) of my amendment, which states:
“The Commissioner may consider the application without a hearing if they consider it in the interests of justice to dispense with a hearing.”
My right hon. Friend is absolutely right that time is of the essence and that there will be situations in which it is right that things move as quickly as possible. I hope that that goes some way towards reassuring him that I am trying to come up with amendments that are balanced. I am aware that we have two different examples here; I am genuinely trying to make sure that I do not make it harder for those genuine cases, because I totally understand how important it is and I understand that there is a lot of pain and suffering, for all the reasons that have been set out. I hope that I am getting the balance right, but I am always happy to have further discussions.
Sir James Munby was one of the first to criticise the High Court safeguard; the hon. Member for Spen Valley says that she has taken those criticisms on board. His criticisms of the panel seem similarly acute. I hope that the Committee will agree that my amendment answers a real need and recognises the important role of family in the death of a loved one in most situations, although I accept not in all. It has a profound and long-lasting impact on them too, and their needs should not be entirely disregarded in the name of autonomy. The hon. Member for Rother Valley gave a very powerful speech yesterday on the subject, setting out that the amendment is not required because any decision could be judicially reviewed. I am not qualified to opine on whether judicial review would be relevant with this panel, but I look forward to the Minister covering the matter in her closing remarks. We need to be clear on that front.
Judicial reviews are a challenge to the way in which a decision has been made, rather than to the rights and the wrongs of the conclusion reached. It is important that this is understood. A judicial review just checks that the process was followed, not whether the right decision was made. That is why our role in setting the process is so important. If the new clause remains unchanged and there is no requirement for a panel to accept relevant evidence from a family member, there will be no avenue for appeal under judicial review if such information is not taken into consideration when making the decision, because the process will have been followed.
Our role on this Committee is a heavy one. It is about getting it right and setting the process for judicial review to work as it should. We have an appeal process in the new clause for when a panel wrongfully turns down an application, but not for when it wrongfully approves one. Why not, if judicial review is available and suitable? I suspect that it is because, as the hon. Member for Rother Valley is aware, the judicial review is not the best way to do it. It is a long, onerous process involving application for permission and, in some situations, the securing of legal aid, which is fraught with difficulty. I say gently to the hon. Member that if judicial review is not suitable when the panel has wrongfully turned down an application, then why is it suitable when they have wrongfully approved someone for an assisted death?
I think it is clear that my amendment is needed as a safeguard to prevent wrongful deaths under the Bill. It is a helpful safeguard. No panel will ever want to see someone assisted to die who should not have been, just because it did not have all the information. I suggest that the safeguard will help to secure panel members, because they will feel reassured that a process is in place to avoid mistakes. If my amendment is not agreed to, and if wrongful approvals have to rely on judicial review for a remedy, I suggest that the impact assessment will need to take into account the likely impact on socioeconomic groups that rely on legal aid for funding. I suspect that, owing to a lack of funds, they will find themselves with no avenue at all to appeal. I do not think that any of us wants a two-tier system in which rich families can intervene and poor families cannot.
Jack Abbott
In case I was not clear enough about my misgivings about the judicial stage, I will set them out again. In my view, the people making a High Court judgment probably do not have the breadth of knowledge and experience to pick up a number of the things that we have debated over the past few weeks. One cannot expect legal professionals also to be experts in palliative care, psychiatry or whatever it might be. I was saying that I had misgivings for that reason and that the approach that the panel is taking is more broadly in line with some of the Committee’s misgivings. It is an enormous improvement. I was not saying that we should remove that stage, dilute it or anything else. In fact, I am saying that it is much more robust and that it puts in the right safeguards, while getting the balance between safety and a recognition that people do not want to spend the last days of their life in perpetual meetings.
We have spoken about coercion a number of times. It is an incredibly powerful and important argument. I am sure my comments will be misrepresented, but we have to be clear that in some abusive relationships—which are pernicious, evil and subtle, as an hon. Member has mentioned on a number of occasions—someone might encourage their partner, or whoever it might be, not to go through with assisted dying so as to extend their days in pain and agony. We have to recognise that abuse takes many forms and is endemic in our wider society. That goes back to my point about why it is important to have a wider range of expertise on the panel. It is crucial to have psychiatrists and experts in fields beyond law. It is important to look at new clause 21 not in isolation, but in parallel with other amendments that we have agreed to, such as amendment 21, which specifically refers to coercion, training and so on. It is incredibly important to look at it in the main.
Finally, I will talk broadly about the questions of capacity and burden. We have spoken about not being able to police discussions. I would not necessarily go that far; I recognise that the relationship between the assessing doctors and the patient in the immediate term should approach this in the right way. However, these conversations take many forms and can be articulated in many ways, beyond what we can legislate for.
We have talked about the question of burden. If I, as someone who has just received a terminal diagnosis, have said, “I don’t want to spend my remaining days in absolute agony and fear, and I don’t want my family to go through that either,” that should not preclude my going through the decision-making process. However, I appreciate the nuance and the difference between that and someone saying or hinting that the decision has been taken out of their hands.
Another reason could be depression. I am sorry to put this incredibly glibly, but if I got a terminal diagnosis, I would feel pretty depressed about it; I might also be clinically diagnosed as depressed. Some previous amendments were about whether my past medical history—let us say that I had suffered from depression a number of times in my life—should preclude me from going through with the process.
The argument about family and friends saying, “Actually, Jack has suffered from depression at two or three moments in his life—maybe he should not access this,” although I think I am making the right decision, is powerful. To a degree, we have to rely all the time on a doctor, psychiatrist or anyone else to use their good professional judgment as to whether a person’s depression or otherwise is impairing their fundamental judgment on going down this route. I do not think that we can ever legislate 100% for that. We have to trust and rely on good practice, while giving people the training, skills and safeguards that we need to go down this route.
There is particular interest in the role of the commissioner. It is fairly regular procedure to have individuals being ultimately held to account in their various guises across the board. If there were not that single point of reference, people would be equally upset that no one could ultimately be held accountable for the wider system. It would be the same if the High Court system were retained; people would quite rightly ask who is actually overseeing the process. As well as the commissioner, with safeguards, the people ultimately responsible would be the Prime Minister, the Secretary of State for Health and Social Care or the appropriate authorities.
One question that perhaps my hon. Friend the Member for Spen Valley can answer is what the role is for the commissioner in Wales. Would there be separate commissioners for England and for Wales, or would the Secretary of State appoint one commissioner for both jurisdictions?
Amendment (e) to new clause 21, tabled by my hon. Friend the Member for Filton and Bradley Stoke (Claire Hazelgrove), is on a similar theme to my amendments 414 and 415; I am grateful to my hon. Friend the Member for Spen Valley and the rest of the Committee for supporting them in order to ensure that there is an informed consent procedure in the Bill. The amendment seeks to ensure equity for everyone who otherwise meets the eligibility criteria and who wishes to request assistance as set out in the Bill.
The Bill makes provision that the eligibility panel
“may hear from and question, in person, the person who made the application for the declaration.”
It clarifies that
“‘in person’ includes by means of a live video link or a live audio link.’
That is sensible because, for a number of people, travelling to a specific venue simply would not be possible, owing to their medical condition. However, the challenge around equity arises because several terminal illnesses also mean that people face significant, prolonged and unplanned pain episodes. It may make appearing before a panel via a live link at a specific, booked time slot all but impossible for some people. It would unduly and unfairly delay or at least make more difficult their wish to request consideration for assistance while they are in pain. Further panel appointments may not be straightforward to arrange, because of the number of people who would need to attend. A similar pain episode may happen again. Pain is not plannable, as we all know.
I am sure that none of us in this room thinks that the unintended consequence of excluding people who suffer from such pain episodes is in keeping with the intention of the Bill. This simple but important amendment would ensure that there is provision, where necessary, for otherwise eligible adults to pre-record their answers to the questions set by the panel in advance.
The amendment is very sensible, not least because there are some conditions in which people experience a very significant decline at the end. In a matter of days, they may lose the ability to speak, while retaining capacity, so the ability for people in a small number of cases to give pre-recorded answers is incredibly sensible.
Jack Abbott
I agree wholeheartedly. It is important to emphasise that this provision will apply only in a relatively small number of cases, but it is a very important one. It would be subject to clear guidance developed following the passage of the Bill, as with the schedules and other related items, and would be subject to the same safeguards as the live link provisions already included in the Bill. Essentially, it would provide equity of access to request assistance for all otherwise eligible adults, no matter the pain or any other specifics of their terminal condition. Nobody should have to wait longer because of the pain that they are in.
My hon. Friend the Member for Filton and Bradley Stoke has tabled the amendment based on her experience. A close family member of hers, who has a terminal illness, has been experiencing pain episodes that would make it impossible to plan to join a meeting with a panel at a specific time slot via a live link. To require her to do so would only increase stress and distress at what is already an incredibly difficult time for her and her family. If the Bill becomes law, it would not be right to exclude anyone eligible from being able to request assistance as a result to the impact of the terminal illness itself. I encourage Committee members to join me in supporting the amendment.
I appreciate that bandwidth has come up several times. I admit candidly that it was a small factor in my thinking when I voted on Second Reading. By “bandwidth”, I mean the bandwidth of the professionals we are asking to do this work. By and large, I think we have done very well to keep politics out of this room, which is extraordinary, given the length of time that we have spent in here. However, there were a couple of moments of candour from Opposition Members on the Committee when they expressed concerns about whether the NHS has the capacity—
Terminally Ill Adults (End of Life) Bill (Twenty-third sitting) Debate
Full Debate: Read Full DebateKit Malthouse
Main Page: Kit Malthouse (Conservative - North West Hampshire)Department Debates - View all Kit Malthouse's debates with the Ministry of Justice
(1 year, 5 months ago)
Public Bill Committees
The Chair
Would everyone ensure that electronic devices are turned off or switched to silent mode? Tea and coffee are not allowed in the Committee Room. We continue line-by-line consideration of the Bill. I remind Members that interventions should be short and raise points of clarification or questions; they should not be speeches in and of themselves. Members who wish to speak should bob, and continue to do so throughout the debate until they are called. When Members say “you”, they are referring to the Chair.
The Chair
Yes, “you” or “youse” should not be used to refer to one another during the debate.
Clause 12
Court approval
Question (11 March) again proposed, That the clause stand part of the Bill.
I am about to come to that. I am going to suggest how we could have done it better. I take the hon. Member’s point. I do need to answer that question.
I am just intrigued. My hon. Friend is talking a lot about the evidence. Did any evidence on anything in the Bill change his mind on any aspect of it?
Yes; it would be inappropriate to ask a panel to operate in an adversarial system. It would be inappropriate to ask a psychiatrist and a social worker to act as a judge. We need a proper court system, as we always do with other important decisions in which two sides make arguments. Let me try to explain. I agree that what is being proposed is an inquisitorial system through a panel, which is completely alien to the British common law model of making important decisions. That is what is being suggested, but I do not think it is appropriate.
I do not believe in assisted dying; I think it is the wrong thing to do. But if we were to do it, we should have a proper multidisciplinary team at the outset—I sort of feel that that is where we have got to through these debates, and if the debates had happened properly and prior to the Bill being drafted, something more like this system might have been proposed. Perhaps a doctor does the first declaration as proposed, but we then go into a proper multidisciplinary team, rather than just having the options to refer to psychiatrists if appropriate or to maybe consult palliative care specialists.
The involvement of all the appropriate specialists in assessing capacity and coercion, making clear the alternatives that the patient has, making a proper diagnosis, and hearing from family members—all the appropriate processes that should be followed in a case like this—should happen at the very beginning of the process. There is no need for a lawyer at that stage on the multidisciplinary team that we have created; it will be a proper combination of clinical and social work professionals. Their reports would then feed into the judicial process, which would be the second or third stage, if we have a doctor at the beginning. The judge would then hear arguments from, as it were, both sides. That need not be a distressing or time-consuming process, but it would be an appropriate one under British law to make decisions of life and death. That court would clearly hear arguments made by both sides.
To be clear, does my hon. Friend envisage that I would either be in the hearing, or lying in my bed listening to the hearing—the fungating tumours in my neck restricting my ability to breathe—having gone through all the eligibility criteria, but having to listen to someone argue that I should go through a death that I am trying to avoid, by arguing that I do not have capacity? Does he not see that that could be profoundly distressing to someone who is in the closing moments of their life? In many ways, it might actually be cruel and traumatic for me to hear somebody arguing, frankly, that I should endure the pain, in their opinion.
I regret that my right hon. Friend is making that argument. The fact is that the panel is already going to consider whether it is appropriate. There might not be some professional who is there with the purpose of suggesting that there are other things that the panel should consider, but the patient is already lying there waiting for powerful people in another room to make a decision about whether they are going to get an assisted suicide or not. That process is already going on.
On my right hon. Friend’s point that it is intolerable for somebody to hear the case made against their assisted death, let me put to him an alternative hypothesis. Rather than somebody in the situation that he describes, let us imagine somebody who is the victim of years of coercive control, who has undiagnosed mental health conditions, who is feeling a burden on their family and whose relatives want their money. None of that has yet been fully identified through the initial doctor’s stage of the process, but it has been commented on in some of the evidence that the multidisciplinary team heard. That person might hope that somebody is there making the case for them, as might their family.
It is totally appropriate for a court to hear that this procedure should not go ahead because of those other factors, which are only now being properly understood by the decision maker. That decision maker is doing so openly, not in a private session. The decision is being made not by people who are committed to the procedure and process of assisted suicide, but by an independent judge, sitting in their judicial capacity in open court, with all the safeguards and accountability that the judicial system has. That feels to me like a perfectly appropriate safeguard, and I suggest that it is, in principle, what the House of Commons thought they were getting when they supported this.
I appreciate that. None the less, I will speak briefly to the amendment as I still have concerns. The amendment provides an absolutely necessary safeguard and I welcome the fact that my hon. Friend has accepted it. I am pleased that it extends to panel members, but it does not meet the safeguarding needs when it comes to people of ethnic minority backgrounds, coercion, cultural competence and so on. People and organisations have raised concerns about that.
The truth is that the Bill is very gendered: the analysis by women’s organisation The Other Half has found that if the Bill passes, and trends follow those of Australia, 1.65% of all deaths in this country could take place via assisted dying. If so, as many as 1,400 domestic abuse victims could die each year through that process. It is vital that Members on both sides of the debate are conscious that we are opening up a new avenue for domestic abuse through the Bill. That is what the amendment speaks to. To save the Committee time, I will not go over the detail because it was covered during our discussions of the previous three amendments.
I rise briefly to amplify a couple of points from the excellent speeches by the hon. Members for Rother Valley and for Ipswich. First, in clarification, I understand that there are situations where judges can sit in essentially supervisory positions—not least, for example, on the BBC board—and they can of course be Cross Benchers in the House of Lords. They are allowed to undertake other charitable trustee roles, although they are restricted in their activities.
I think this is important. Those roles are what those judges do in their spare time—they could also chair a football club or something as well. The point is that they are being asked here to fulfil a function on behalf of the Government in their working hours, explicitly because they are a judge—yet they are not sitting as one. Surely my right hon. Friend acknowledges that that is essentially unprecedented.
No, I do not acknowledge that at all. Over the years we have started to use judges relatively flexibly—even, for example, for non-statutory inquiries; my hon. Friend has referred only to statutory inquiries—and that is so much the better. I am not a lawyer myself but I believe in the rule of law, so I think that having judges opining on our freedoms or otherwise is generally good for the country.
I want to amplify a couple of points. On Second Reading, I made the case for the High Court to be involved. I agree with my hon. Friend the Member for East Wiltshire: at that stage, I was very happy for there to be effectively a scrutiny and authorisation third layer to the Bill. My understanding of judicial opinion was that, certainly in Lord Sumption’s view, that level was unnecessary; I think he referred to it being a profoundly intimate conversation that really should just be between the patient and the doctor. However, I think my hon. Friend the Member for East Wiltshire is right that the weight of the moment and opinion in the House then was that there should be that third layer of scrutiny and opinion.
I also dismiss the argument about the capacity of the judiciary to absorb this. I fear that if we start to accept that argument, we go down a very difficult road for Parliament—not least, for example, because we should then have opposed the Bill that went through the House on Monday night, because of its greater impositions. As many will know, the Crime and Policing Bill went through without a vote. It will impose new burdens on the judiciary and the police, as will the new offence of spiking. No doubt the immigration Bill coming through will also put significant extra burdens on the police and the courts.
There are two separate questions here: one is what Parliament does, and the other is the capacity of the public sector to absorb that. The answer is not to say, “Well, I am afraid all you people have to go through a death you do not want to go through”; it is to say that we do not have enough judges and to recruit more judges, if that is required. In my personal view it is not, but at the time my view was that if as a footballer I could show up in the middle of the night and get an injunction to stop The Daily Mirror from publishing unpleasant stories about me, then the judges should be able to find time in their schedule to accommodate the requirements of my death.
My right hon. Friend is absolutely right. If Parliament decides that we should proceed, then we should, and the public sector will be obliged to make accommodation and provide the necessary resources. Does he agree that, on that basis, it would be appropriate for the Government to have clarified by this stage what the resource requirements of the new system would be, to make clear that there is the capacity in the system to do it? Does he share my regret that that has not been done?
No, I do not share that regret, because until today, and until we all vote on it, the Government do not actually know what they are facing. They have undertaken that they will produce exactly the assessment that my hon. Friend is talking about between the end of this process and Report, so we can all have a look at what it will be.
At that point, Members can put a price on other people’s death and other people’s pain if they want to, but there are lots of situations where the House of Commons decides about things on the basis of moral principle and public interest, and then we ask the public sector to absorb it. If that causes operational problems, then we solve those separately. In my 10 years in the House, I cannot remember anybody ever standing up and saying, “We shouldn’t do this because the public sector can’t cope.”
I recall being on the Domestic Abuse Bill Committee. We heard time and again from public sector representatives that bringing in changes such as a domestic abuse register would bring extra work and be difficult. It is their job to flag up those points, but it is our job to assess what is the right thing to do in legislation.
The hon. Lady puts it exactly right. These are two separate questions, and we should not conflate them. Certainly, we should not allow the House of Commons to be constrained by those capacity constraints from doing what it thinks is the right thing. We should do the right thing, and then put pressure on the Government to provide the facilities that we think are required.
Daniel Francis (Bexleyheath and Crayford) (Lab)
On that point, in our oral evidence we were not able to hear from witnesses about the changes to the clauses, because we did not understand what the repercussions would be at this stage.
As I recall it, there were a number of questions at the oral evidence stage about the notion of there being a panel, specifically when we had the panel of lawyers. We asked about that. But the hon. Gentleman is right; the issue was an emerging one at the time. That is the nature of the kind of iterative policymaking, or legislative process, that we are going through at the moment. The Government have said that they will produce an impact assessment, so we can all have a look. It will not be long—three or four weeks—and then we will all be able to make a judgment.
Sarah Sackman
My hon. Friend has developed her thinking, and the Government have worked with her to reflect that policy intent. I think she is right that the panel is capable of doing just that and it could operate in that way.
Amendment (c) to new schedule 2 relates to the issue of domestic abuse training. It would make the voluntary assisted dying commissioner responsible for ensuring that all panel members had received training on domestic abuse, including coercive control and financial abuse. Persons appointed to the list of eligible panel members would already be qualified in the field of law, psychiatry or social work, and would have done all the training that pertains to receiving a professional qualification in those fields.
In addition, under new schedule 2 tabled by my hon. Friend the Member for Spen Valley, the commissioner would be able to give guidance to the panels, which could include training requirements, and the panels must have regard to that guidance in the exercise of their functions. That is all I propose to say about that. It might be seen as an example of something that would typically—I am not saying it has to—be left to regulation or the guidance, rather than being in primary legislation.
Amendment (d) to new schedule 2 relates to the panel sitting in private or in public. It seeks to ensure that panels sit in private by default.
I am not sure that my amendment (d) was selected—unfortunately, I missed the deadline— so the Minister does not need to cover it.
The point is that we want to preclude the possibility, at whatever stage it might happen, that somebody could deliberately render themselves terminally ill by the voluntary stoppage of eating—
I share the confusion of the hon. Member for Spen Valley. By the time we get to clause 13, my understanding is that the two doctors and the panel are already satisfied of the person’s eligibility, so they are by definition terminally ill. I do not understand why they would then seek to render themselves doubly terminally ill by adding the characteristics the hon. Lady is talking about. Maybe I am getting confused. I could understand the hon. Lady’s case if she had made it way before, but at this stage the person has been through two doctors and the panel and got permission to go ahead. I do not understand why they would then starve themselves.
The point is that they may take the opportunity to use the further provision that exists for people whose death is expected within one month.
I take the point, but I still think it is necessary to have this additional safeguard to close a loophole that means that people could render themselves terminally ill within the space of a month and use the opportunity presented by the additional provision in the Bill for reducing the 14-day waiting period. This is a real concern of people who have reviewed this legislation. There is a possibility, as has been seen in other jurisdictions, that people could—I do not necessarily want to adopt the right hon. Gentleman’s language—hasten their eligibility for assisted dying through this particular method. All I am asking is that we close the loophole so that people will not be tempted to follow that very damaging path.
Ordered, That the debate be now adjourned.—(Bambos Charalambous.)
Terminally Ill Adults (End of Life) Bill (Twenty-fourth sitting) Debate
Full Debate: Read Full DebateKit Malthouse
Main Page: Kit Malthouse (Conservative - North West Hampshire)Department Debates - View all Kit Malthouse's debates with the Department of Health and Social Care
(1 year, 4 months ago)
Public Bill CommitteesIt is a pleasure to serve under your chairship, Ms McVey.
The purpose of amendment 457 is to exclude a person who has less than one month to live from being eligible for the shorter second period of reflection of 48 hours if that person has voluntarily stopped eating and drinking. That person would instead be required to comply with a second period of reflection of 14 days under clause 13(2)(a). The amendment could create uncertainty as to the required length of the period of reflection. It is unclear, for example, if “voluntarily” would include where someone’s appetite has naturally declined as they approach the end of life, and therefore whose decision to stop eating or drinking may not be deliberate.
As I have said previously, the Government have worked with my hon. Friend the Member for Spen Valley on certain amendments to bolster the legal and workability sides of the Bill, and the purpose of amendment 471 is to clarify that the co-ordinating doctor needs to be satisfied that, immediately before witnessing the second declaration, the criteria set out at subsection (4) are met, and not at any time before. That also ensures consistency with the duty on the co-ordinating doctor in respect of the first declaration.
Amendment 316 would require that where the co-ordinating doctor reasonably believes that the person seeking assistance has less than one month to live from the court declaration, they must refer that person for urgent specialist palliative care. As the referral must be made whether the patient wants that referral or not, this may result in unwanted referrals. The effect of this amendment is unclear.
As drafted, clause 13(2)(b) sets out that where the person’s death is likely to occur within one month, the period of reflection is then 48 hours. Amendment 316 sets out that the referral to urgent palliative care must be made alongside the co-ordinating doctor making the statement, which is the last step to be completed before the provision of assistance under clause 18. That would mean that in some circumstances, there may be insufficient time to make a referral before the person is provided with assistance to end their life.
I want to emphasise that at the moment the patient reaches that point, they will have had their palliative care options explained to them extensively, under the Bill, and it is highly unlikely at that point, as my hon. Friend the Member for East Wiltshire said, that anyone would not be in receipt of palliative care, given the very late stage of their disease.
I happened to be at a hospice in Stafford yesterday on a ministerial visit and was extremely impressed by the work that the hospice staff were doing on family counselling, and advice and engagement both with the patient and family and loved ones, so the right hon. Gentleman is right that the hospice sector, among others, plays a vital role in that holistic engagement with patients throughout the process.
Amendment 374 requires that the co-ordinating doctor must notify the voluntary assisted dying commissioner where they witness a second declaration and where they make or refuse to make the supporting statement under clause 13(5), and that the commissioner must be provided with a copy of the second declaration and any statement. I hope that those observations were helpful to the Committee.
Before I give way to my right hon. Friend, I want to posit the hypothesis of a private provider that has been established explicitly for the purpose of facilitating the assisted death procedure for patients. If that provider steps back when the patient decides to cancel their declaration, the provider is required to notify the GP as soon as practicable, whatever that means—the timeframe there is clearly at the convenience of the provider, not the patient. My concern is what happens when the patient’s GP is not quickly informed that they have decided not to proceed with the assisted death and they are sitting in limbo. Obviously, there are significant concerns about their wellbeing, given their decision and the state they are in. It is not yet fully clear to me what the obligations on the doctors would be at that stage.
I am not entirely certain that my hon. Friend’s remarks are germane to the amendments, but nevertheless. As we discussed when debating clause 13, at the stage he is talking about, the patient will have had all their options—“all appropriate”, as I think we have amended the Bill to say, services that will be available to them—explained to them. If they are cancelling, the presumption has to be, in respecting their autonomy, that they are choosing one of the alternative paths that has been laid out to them. It is quite hard to legislate for a negative.
I am speaking to the group as a whole, which includes clause stand part. I have no objection to the amendments. My right hon. Friend is absolutely right. As I said, the expectation is that the medical professionals involved in the person’s care will have laid out their options clearly. We are to a certain degree trusting in that because amendments to insist on it have been rejected, although I recognise that it will be the clear expectation. He is right that it is hard, as it were, to prove a negative.
Nevertheless, the purpose of my speech at this point is to tease out from the advocates of the Bill what their expectation is. My right hon. Friend has clearly explained his expectation, which is that we are dealing with somebody whose mind is clear, rational, uncluttered by other concerns and entirely free of any undue influences or anxieties about the different choices they might make. Having previously decided in the fullness of their autonomy that they wanted to go through the procedure, they have now decided in the fullness of their autonomy that they want to do the opposite, and we should say, “Fine. We have no further interest in your decision making. It is your choice—you’re on your own.” I am very concerned about the implication of my right hon. Friend’s comments about the sorts of patients who might be involved in the process of assisted dying.
Well, we certainly hope so. Nevertheless, that is inconsistent with the doctrine of absolute patient autonomy, which in this circumstance allows a patient to withdraw from the medical treatment, or at least from the support of the medics who had been facilitating their assisted death. They are rightly under no obligation to receive any other sort of care.
Of course, one would assume that in most cases medics will be closely involved in looking after these patients, because they are likely to be very ill. Nevertheless, the Bill has nothing more to say about patients who have just stepped back from the brink of suicide; the medics will have no further obligation to ensure that they will be looked after—except by the GP, as soon as it is practicable for the provider who has just been denied the business of looking after the assisted death to get round to emailing them. If that is seen as sufficient to ensure that those patients will be properly looked after, I beg to differ.
I am not sure what compulsion there is in wider legislation for there to be a duty of care to patients who do not choose assisted dying in the first place. For thousands and thousands of patients who die, there is no legislation that imposes certain duties on medics or others to look after them; we rely on the professional standards and overall atmosphere of the healthcare system, as we would in the case of these patients.
As my hon. Friend knows, overseas experience shows that a large proportion of the people who obtain the right to an assisted death—up to a third—do not cancel but do not exercise it. As we have said before, for many people assisted dying is an insurance card that they may choose to use if and when they think their life becomes intolerable.
I recognise that, but that is not germane to the debate that we are having, which is about the actual cancellation. There is a question about why there would have been a cancellation. My right hon. Friend is right that there is no obligation to proceed once a patient passes a particular hurdle. Many will not, but when someone decides actively to renounce their decision, a big question should be asked: what is going on, and what further help is needed?
My right hon. Friend suggests that we do not step in and ensure that care is provided—that, in other circumstances, there is no additional obligation in relation to patients. I am afraid to say that he has, as ever, a coldly rationalistic vision of healthcare and of the sorts of patients we are dealing with. As I have said to him, these patients will be acting much as I imagine he would imagine—I think from a position of health and self-confidence—himself acting in that circumstance. In fact, we are dealing with people who have decided to renounce their decision to proceed, and so are by definition in some turmoil.
I crave the indulgence of the Committee, because I am talking at length about a set of amendments that I do not intend to oppose, and I recognise the value and necessity of the clause. However, I draw to the Committee’s attention that we are dealing not simply with a bit of paperwork, but with a human being who, having made one enormous decision—to die—is now making an enormous decision to live, and we are treating it as if it is only a bureaucratic question.
I finish with a question to the hon. Member for Spen Valley or to the Minister, to help me understand something that confuses me in the clause.
Amendment 321 would require a proxy to record, when signing the declaration on behalf of the person, the reason why the person they are acting as a proxy for is unable to sign their own name. The recording of the reason may make the use of a proxy more transparent. It may also assist others involved in the scrutiny of the process to understand why a proxy was used.
Amendment 431 seeks to restrict who can be a proxy under the Bill to attorneys with a lasting power of attorney, or LPA, for health and welfare decisions—that is, those people who are able to consent to or refuse life-sustaining treatment. The amendment raises significant practical issues. First, not everyone has an LPA. Secondly, where a person has made an LPA, they will have decided whether to give the attorney the authority to refuse or consent to life-sustaining treatment. That is not automatic and means that not all attorneys would be able to meet the eligibility requirement of the amendment. Thirdly, the Mental Capacity Act 2005 enables an attorney to exercise power under an LPA only if and when someone has lost capacity.
Does the Minister agree that, unfortunately, my hon. Friend the Member for East Wiltshire seems to be labouring under the misapprehension that there is some reputational test in becoming an attorney? In truth, I can appoint anybody I want to be my attorney. There is no verification or otherwise until there is some form of dispute around the exercise of the power of attorney. In fact, the regulations may mean that we have stronger verification of the bona fides of the person who is a proxy than we would have through the LPA route.
Does the Minister not also find it slightly sad that, given the type of Conservative I know my hon. Friend the Member for East Wiltshire is, he thinks the concept of being of good standing in society is somehow meaningless?
I am not a lawyer, but thankfully I am sitting next to a very eminent and distinguished one—my hon. and learned Friend the Member for Finchley and Golders Green—who has confirmed that everything the hon. Member for East Wiltshire said was correct from a legal standpoint, so I shall leave it at that.
Clause 15(5) of the Bill defines a proxy as
“(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.”
Amendment 473 would remove subsection (b) from the definition of proxy, instead introducing a regulation-making power to specify the persons who may act as proxy. That would avoid any ambiguity around the meaning of a person who is of good standing in the community and retain flexibility to amend the specified list in regulations.
I am grateful—I really do thank the hon. Lady, because the effect of this process on the medical professionals who will be involved is a very important consideration, and one that we have perhaps not given enough attention to. That is why we will come to the conscience clause in due course, although we have discussed it a little already. The hon. Lady is absolutely right that there is a difference for the medics in the extent to which they are involved in the administration of the death. I am afraid I do not see a major moral difference between providing the wherewithal—setting things up for, or indeed helping, the patients to ingest or otherwise self-administer the fatal drug—and people performing the act themselves. The distinction is very obscure; there is a significant grey area there.
On the hon. Lady’s point about appropriate consideration of the feelings of the medical profession, if she believes in doctor autonomy, she should believe that doctors ought to have the autonomy to decide for themselves whether to perform euthanasia, if euthanasia were legal. That is what happens in other countries. In Canada, doctors can decline to take part, or they can participate.
Given the question of autonomy, it is worth noting that in countries where euthanasia is legal, it is the overwhelming choice of the patients, as I think it would be for me. If I were facing that terrible moment and choice—we will come in due course to the question of the drugs involved and the process of taking them, but swallowing all these pills is not a pleasant process—it would be far easier, more humane and less painful for a doctor to administer the drugs intravenously. I visited Canada and met a doctor who had been responsible for over 300 deaths, which she herself has performed, because that is the overwhelming choice of the patients. As I am sure the hon. Lady would agree, that doctor is acting with full professional discretion and autonomy.
To go back to my point, I am afraid this is one of the impossible dilemmas that the Bill and the whole concept of assisted dying set up: whether we allow the doctor to do it to us. My concern is that if the stress on self-administration is genuinely felt—not, as I cynically believe, because this is the only way to get assisted dying through the House of Commons—because the Bill’s authors recognise the need to be absolutely sure that the act is voluntary, and if the reason why we insist on self-administration is because we want to be sure that the act is voluntary, what does that say about all the so-called safeguards that exist up to this point? We have been told that those safeguards are sufficient to ensure that we have absolute confidence about the person’s clear and settled wish.
If we are sure that people at this stage in the process have a settled, informed and free wish to end their lives, why should they not be able to ask a doctor to do it to them? The only answer to that question can be that we do not genuinely believe that we are completely sure. We want, subsequent to death, to be sure—in terms of our own moral propriety and sense of amour-propre—that those people did it themselves. It was not our choice; it was not us doing it to them—they did it.
I am a little confused by my hon. Friend’s logic. He has literally just proposed an amendment for the doctor to ask, at the last, whether the person still wants to proceed. Surely self-administration is the ultimate act of consent, which his own amendment requires a doctor to establish right at the last moment.
Dr Shastri-Hurst
I agree entirely with the right hon. Member’s interpretation of the Bill.
There is a further unintended consequence of the amendment tabled by my hon. Friend the Member for East Wiltshire, which I am sure is not his intention but would sadly be the effect: were an individual to qualify under the Bill, should it pass and were the amendment to be adopted, they would inevitably be forced to take the final decision at an earlier stage. If there is a restriction that they can have no assistance whatsoever in performing the act, they will end up making the decision when they know that they have the entire physical strength available for them to do it, and that actually brings forward the point at which they choose to die to an earlier stage.
After 10 years of campaigning on this issue and spending so much time with people whose family have gone to Switzerland, one of the things they consistently say is that people went to Switzerland much earlier than they wanted to because they had to go while they were still physically able. I think this is a critical point that people have to realise. We should not compel people to do this earlier than they would otherwise wish to simply because of these restrictions.
Dr Shastri-Hurst
My right hon. Friend makes an important and powerful point. I think there is a consensus among the Committee that there is no desire for people to take this ultimate step at an earlier stage than is absolutely necessary for them. My very real fear is that, were we to adopt this amendment, we would bring forward that point of decision.
Terminally Ill Adults (End of Life) Bill (Twenty-sixth sitting) Debate
Full Debate: Read Full DebateKit Malthouse
Main Page: Kit Malthouse (Conservative - North West Hampshire)Department Debates - View all Kit Malthouse's debates with the Ministry of Justice
(1 year, 4 months ago)
Public Bill Committees
Lewis Atkinson
My instinct is that it would not. If the Bill becomes law, it would be a lawful choice. The hon. Gentleman may not characterise it as healthcare, but it would be part of healthcare and end-of-life services. We would not accept such stipulations on other healthcare services. I can see a sketch that some may choose to draw; someone mentioned housing supported by a religious institution. The reality is that people do not go out of their way to offend, and they try to live in harmony with those around them. If people are clear that they might actively explore assisted dying as an option, they will not choose to spend their last days in a community where others are ideologically opposed to their choice; it would be uncomfortable for the individual. They would, however, have the legal right to do so.
Having also thought about this overnight, I think there is a freedom-of-association argument. If it were a Roman Catholic organisation designed just for Roman Catholics to live in, such as a home for retired priests, or if it were a Jewish organisation just for Jewish residents, I could see that, but that is not a service that is generally on offer to the public. My concern is whether we could see a situation in which the board of trustees of Hampshire hospitals foundation trust has a majority of people who have a strong religious conviction, and they vote that the service shall not be provided across the three hospitals that the trust manages. If the provision is drawn tightly and the freedom-of-association argument could be made, I could see it. Having said that, there is no institutional objection power in law for abortion: people just do not offer it because they do not have the staff to offer it. It feels to me as though that is what the hon. Gentleman is pointing to.
Lewis Atkinson
That is entirely right. The response of public bodies such as NHS trusts is a slightly different issue. I would not want to speak for the Government or imagine what the Secretary of State might say, but it would be inconceivable to me for a quasi-independent public body to decide, on a vote on principle by some local governors, not to offer citizens choices that have been enshrined in law. That is a slightly different point, but I am grateful to the right hon. Gentleman.
The hon. Member for East Wiltshire suggested yesterday that if someone chooses to have an assisted death, everyone in the care home or wherever would be part of it. That fundamentally misunderstands the point; I will go for “misunderstands” rather than doubting his intentions, but some would see it as scaremongering. No one is asking for the right to do it in a communal area, where staff or neighbours are forced to observe or participate in any way. Where people live in their own home, they should have rights and dignity at the end of life, whether that is in a care home or in a private residence. We cannot deny them the choice to access end-of-life options, as set out in the Bill. I therefore cannot support new clause 22.
This is obviously a difficult and sensitive area, but does the hon. Lady think, for example, that a women’s refuge run by a Catholic foundation should be allowed to evict a woman who wants or has an abortion?
I absolutely do not think that, because her abortion rights are set out in law. However, I also think that when that woman is going into a refuge, that refuge will make it clear that she may choose not to. It is about empowering both sides.
I am grateful for the right hon. Member’s intervention, but let us follow that argument. Let us say that somebody wants to pursue assisted death, and they want to go into a place, but they are informed that that organisation does not want to provide or has not signed up to providing an assisted death. It comes back to the issue that my hon. Friend the Member for Sunderland Central rightly raised, which is that people do not deliberately go out looking to offend people. If we were in that space—I cannot imagine being there, but I am trying to understand it—would we want to access that service, because its religious belief differs from assisted dying as a principle?
There is much to get into, and I will try to respond a bit more when I speak again. I do not want to revisit the whole question of palliative care but, on the scenario set out by the hon. Member for Penistone and Stocksbridge, the strong advice that I have received from palliative care professionals is that it is not accurate to say that somebody’s pain cannot be palliated. It might well be that there is a difficulty with particular opioids, but there are other palliative care options available to everybody. No palliative care doctor ever says that there is nothing they can do.
Well, we have been over the whole question of palliative care and alternatives to assisted suicide; nevertheless, I wanted to challenge that scenario.
On the suggestion that there is a comparison with an abortion service no one is suggesting that a woman who goes into a refuge, discovers she is pregnant and wants to have a termination is somehow obliged to have it on the premises of the refuge, which does not believe in abortion. That is not a scenario that could happen, because that is not how abortion operates. What we are suggesting is that somebody who arrives in a care home or hospice that does not want to facilitate assisted suicide would not be able to receive such assistance there. There is no objection to their believing in or desiring an assisted suicide; the point is to protect the institution.
I recognise the difficulty with the specific case the hon. Member for Penistone and Stocksbridge raised. Nevertheless, the alternative is to have blanket permission for any resident of any care home or hospice to insist that they can receive an assisted death in that home or hospice, despite what the rest of that community and the management might want. Indeed, the patient might have signed a contract specifying that they will not seek an assisted death in that home or hospice. There is much more to discuss, but I hope that that is helpful for the hon. Lady.
The hon. Gentleman makes a good point, and I am aware of the Minister’s comments. This will be part of the discussion as we take it forward. That is why this debate is really powerful.
In their written evidence, the trustees at Willow Burn hospice, based in the UK, told us:
“Our Mission is to deliver hospice care of the highest standard to our patients and those important to them...We also believe that we should support and enable people to make the choices that matter to them.”
They said they had not decided their position on assisted dying and remained
“open minded about possible future actions. We believe this stance is in the best interests of patients and their families and reflects the wishes of our community.”
I welcome that open-minded approach and their commitment
“to put care, compassion and dignity at the heart of everything”
they do. Contrary to what the hon. Member East Wiltshire has said, the picture is not black and white. I agree with my hon. Friend the Member for Ipswich in that regard.
Colleagues may remember the evidence given to the Committee by the CEO of Hospice UK, Toby Porter. He clarified for us that institutions do not function in the same way as individuals when it comes to conscience-influencing decisions. He told us:
“There is this idea that your individual opinion guides everything, but with a hospice charity the opposite is true. As many Members will know because of their own work as trustees, the trustees and leadership of a hospice team are required to put personal opinion and interest to one side and always act in the best interest of the charity’s beneficiaries, who are the population.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 195, Q255.]
It is also important to remember that international experience shows that up to 30% to 40% of patients who sign up to the assisted dying process ultimately do not access it. Palliative care may meet their needs, or they may simply change their mind. However, we also know that the reassurance and comfort that the choice of an assisted death provides alongside other treatment and care is really important to them, and I do not believe that reassurance should be denied to some people because of the institution they happen to be in.
The hon. Lady is outlining the issues very effectively. No one, of course, is saying that anybody who works at the hospice that may object has to participate. It may say, “No one here will assist.” We have talked about the importance of place. To a certain extent, I have a right as a tenant in a place where I am resident. It seems that my hon. Friend the Member for East Wiltshire is proposing actively to prevent someone from being able to access this in a place that they choose. That feels to me the wrong balance. I wonder whether that is broadly where she is heading.
The right hon. Gentleman makes an important point. The word that we have used a lot—maybe not enough in some respects—is choice. That is important for individuals, but it is important for institutions as well. Putting an institutional opt-out in the Bill would risk creating confusion and distress for patients and their loved ones, and indeed for staff and volunteers.
To clarify my remarks, I was not necessarily saying that they should have the right to deny, but by default they would if they were, in effect, a closed community that was discriminating in favour of like-minded individuals—a home for retired Catholic priests, for example. By default it would be someone who was unlikely to offer those services. The other point to ask is: if I am in a hospice, in my bed at the last with visitors coming to see me, and one of those visitors is the doctor who is coming to administer to me, I am not quite sure how that would be prevented, unless people are willing for there to be a wrestling match at the door of my room.
Under the terms of amendment 441, the owners of the premises would be entitled to deny access to anyone who is seeking to deliver an assisted dying service on their premises. They would be entitled to prevent that from happening, yes. Obviously, that is an extremely unlikely scenario; nevertheless, it is one that I think we need to contemplate.
I thank my right hon. Friend the Member for North West Hampshire for his clarification. I had understood that he had acknowledged that it would be appropriate for the management of a Catholic care home to specify that there shall be no assisted dying on the premises, but he is suggesting that it would be illegal or inappropriate for the management to make that stipulation; it just would not happen organically, because no one would want that in that place. I regret that, because I think it should be appropriate for the management of a place—not in some sort of vindictive mission to deny people a particular right or service—to convey to everyone else who lives there that this is, as it were, a safe space in which there will not be state-assisted suicide. I think that is a reasonable hope and expectation that many residents will want when they live in a certain place.
Once this becomes normalised, once it becomes 5% or 10% of deaths, as happens in parts of Canada—if this becomes a normal and standard way to die—I think many people will not want to live in communities in which that practice takes place. I am afraid that we will find a demarcation, a bifurcation in society, for those who do not want to live in an assisted suicide community. It would be appropriate for them to have the option of going to live in a place where they know that will not be taking place.
I concede, by the way, that for many of the institutions that we are imagining here, these shared communities, it would be perfectly appropriate and understandable for it to be an option for residents. Let us think about the different sorts of places we are talking about. The Duchess of Somerset almshouse in my constituency—the sort of place we have in Wiltshire—is a lovely place, beautiful. It has lots of Liberal Democrat voters in it, which I know because I knocked on all their doors—unfortunately, the wrong sort of Liberal Democrat. I can imagine many of them supporting the right in their home, behind their own front door—which they have there—to have an assisted death, and I am sure that the other residents of that place would concede that that is appropriate.
In other places in my constituency, however, a hospice being the most obvious one, neither the management nor the other residents would be comfortable—in fact, they would be extremely uncomfortable—with the sense that assisted suicide might be practised in the next-door room. Whether it is performed, as it were, by the hospice staff, or merely facilitated by them—it would be extraordinary were it somehow to take place without the facilitation of the staff who managed the facility and look after the patients—for it to take place on some sort of parallel track would be an extreme imposition on that hospice and its management. It would be extremely disquieting for everyone else who lives and works in that place. I therefore think it is an appropriate consideration to give such places the right, at a management level, to opt out.
I also want to express my deep concern about what we heard from the Minister—his suggestion that we should not give either individuals or institutions the absolute right to opt out of the facilitation of assisted suicide because we think the European convention on human rights might challenge that. He suggested that a court in this country or Strasbourg would overrule a decision or would negate this law, or challenge it, if we passed it with these amendments to protect hospices and individuals. We would then have a court citing international law in an attempt to overturn this law. I am very concerned about that in terms of both parliamentary sovereignty and the Government’s position. Surely, if the Government think this is the right thing to do, we should do it even if we fear an ECHR challenge. This is a craven submission to a lawmaking body that is not sovereign in our country and would be only advisory. I regret what the Minister for Care said and hope that the Justice Minister can clarify that the Government would not concede an ECHR challenge if Parliament decides to insist on individuals’ rights to decline to participate in assisted suicide.
In response to my challenges on that point, the hon. Member for Spen Valley suggested that it would be an interesting topic for a future conversation. This is the moment to have that conversation. We are deciding on amendments now that will insist on people’s right to decline to take part in assisted death. There will be no further opportunity to insist that people have that right to opt out except on Report, which will be a limited opportunity.
Yesterday, the hon. Member for Luton South and South Bedfordshire made an interesting point that had not occurred to me—whether a husband living with his wife in their own shared home could legitimately deny her the right to assisted suicide in their home. It is a very good challenge. It is certainly not the policy intention, as I am sure the hon. Lady appreciates, to enable one partner to deny the other the right to assisted suicide in their shared home. I ask her to accept that that is not the intention. The purpose of the amendment is to give an occupier the right to refuse assisted dying.
With the hon. Lady’s permission, given that this clause will be voted on only next week, I propose tabling an amendment that would address her concern. I am happy to work with her or the Government to get to the point where we are satisfied that that concern has been addressed, because she is absolutely right: in someone’s own home, their partner or the person who shares the home with them should not be allowed to deny them.
We have hashed out the question about protected beliefs in relation to amendment 481, so I will move on.
I am wondering about the difference between my own home with my partner, and my care home with lots of people that may or may not be strangers, and why I should have the right in one but not in the other.
I hope my right hon. Friend will understand that there is a difference between occupying one’s own home and living in a community under conditions set by somebody else, which is what happens if someone lives in a care home. There are terms and conditions. People have to comply with the rules of the place and have obligations to their fellow residents. In someone’s own home, whether they are living with a partner or not, they have absolute rights. That is the difference. If someone signs up to live in a care home, they have to follow the rules of the place, just like in a hotel. In someone’s own home, they can do what they like, as I am sure my right hon. Friend does.
Terminally Ill Adults (End of Life) Bill (Twenty-seventh sitting) Debate
Full Debate: Read Full DebateKit Malthouse
Main Page: Kit Malthouse (Conservative - North West Hampshire)Department Debates - View all Kit Malthouse's debates with the Ministry of Justice
(1 year, 4 months ago)
Public Bill CommitteesI do not know what those might be, but I would be interested to hear. That might well be the case. I am afraid that no hard-and-fast rules can be clearly applied here; or, rather, we have to apply hard-and-fast rules in the knowledge of the grey areas, the exceptions and the situations in which we might feel that the law is unjust in particular cases. We have heard examples of that, such as the evidence about the lady in Australia cited earlier by the hon. Member for Spen Valley. I can well imagine the distress involved if someone suddenly finds themselves in an institution that does not permit an assisted death, but they want one and are in their last days.
The alternative, however, is a different blanket rule. If we were to have a blanket rule that we can do an assisted death anywhere—that is one situation—there would be significant knock-on effects. Serious moral injury would be suffered by other professionals and residents. I recognise that my amendment could lead to someone having to relocate if they want to have an assisted death—I am sorry for that—but I think that we have to draw the line in a way that makes most sense.
It would be interesting, if my hon. Friend’s amendments go through, to see the series of plebiscites taking place in care homes and communal situations across the country as to what the residents do and do not want, presumably by a majority. He asserted that there had been a mass exodus of healthcare workers when VAD came in, but I am struggling to find any evidence to support that claim. In fact, the evidence seems to say that that is not the case. Although there have been some resignations, that has largely been because of pay and conditions, as one might expect.
My right hon. Friend seems hung up on this suggestion that there needs to be a plebiscite or communal decision making—some kind of citizens’ jury. I am not suggesting that for one moment. In fact, I am sure that I have said explicitly that what I want, and what the amendment would enable, is that the owner or occupier, who would probably be an individual or a board of directors, would decide what happens. If they are a decent, compassionate organisation, they might well consult residents—in fact, I would very much expect that to happen if they are doing their job properly—but I am talking about the importance of communal living; and the fact is that a communal living arrangement has leadership. The residents have signed terms and conditions, in a contract, under which they have agreed to abide by certain rules of the house. My suggestion is that if the charity, company or organisation that is managing a care home wants to stipulate that there shall be no provision of assisted dying in that care home, they should have the right to do so. I hope my right hon. Friend would acknowledge that that is consistent with English property rights.
On my right hon. Friend’s second point, I am grateful to him and he might well be right. I am happy to consult my evidence pack, which I do not have at my fingertips, about the effect on the Australian workforce in consequence of the introduction of assisted dying. My memory is that we heard such evidence, or had it submitted to us in written form—his knowledge of the 500 submissions might be better than mine. Let us check and we will have it out, perhaps on social media; I know how much he enjoys those forums.
Question put, That the amendment be made.
I will speak briefly on this issue. An important point was made by my hon. Friend the Member for Rother Valley about the protections that clause 25 and these amendments provide for medical practitioners. I think the clause strikes the right balance, but it is important to remove the blanket immunity. My hon. Friend referred to codes of practice and codes of conduct. We have talked a lot about good medical practice from the General Medical Council, and we have a clause in the Bill on codes of practice. I feel confident in the clause, but I am still having regular meetings with officials about the legal implications of the Bill. I will continue those conversations, but I am happy that the clause as it stands serves the correct purpose.
Will the hon. Lady respond to the point about injunctions? The Minister might want to respond to this as well. My understanding is that in order to obtain an injunction, someone does not have to establish that there is either a civil wrong or a criminal offence. They have to establish that there is a serious matter to be adjudicated, and that there is a strong likelihood of harm taking place. In those circumstances, a court would consider granting an interim injunction, subject then to a further hearing, ex parte or otherwise. The idea that some kind of civil tort needs to be established is not actually correct in seeking an injunction.
That would be my understanding as well, but I am not a lawyer. Fortunately, a lawyer just tried to intervene on me, so he might want to step in.
Sarah Sackman
I find that highly implausible; the likelihood is that the CPS will apply the appropriate charging decision to fit the facts as they have arisen. If they have arisen within the context of this legal regime, for someone acting nefariously, dishonestly or coercively about assisted dying, the charge under this clause would be the appropriate one. I find it implausible that the other scenario would arise. As I said, the CPS is well versed in applying the appropriate charging decision to the appropriate crime on the facts of the crime. I will not speculate or hypothesise on what that might be.
As the Minister said, this is not an unusual exercise for the CPS and operates in lots of other areas. For example, the CPS regularly makes decisions about whether to charge someone with grievous bodily harm under section 18 or section 20 of the relevant legislation—they are both forms of GBH. Which one the CPS chooses depends on the circumstances, the seriousness and the level of intent. As she said, the charge naturally—whether it falls under the same Act or a different Act—comes down to the circumstances.
Sarah Sackman
That is a good example. One knows from charging decisions that often, on indictment, one might have multiple offences to capture the totality of the criminal behaviour. Some of those may be made out, some of them may not. What the Government have sought to do here, working with the Bill’s promoter, is to reflect her policy intent: to convey the gravity of the offence in this wholly new legal regime. As the right hon. Gentleman pointed out earlier, we are sanctioning and decriminalising conduct that has previously been criminal, while ensuring that this offence captures what would be criminal under the new legal regime. From the promoter’s point of view, it is important to signal that the Government have worked with her on this, and the Government’s position is that the result, in this amended form of the Bill, gives both some satisfaction to her policy intent and is compatible with how our criminal law routinely works, so it is workable from the point of view of the CPS.
Sean Woodcock
I do not accept that they are not relevant to this clause, I am afraid, but I take on board my hon. Friend’s point. If I may finish my quote, the review continued:
“There is some difficulty in determining which coma inducing mixture has the most evidence, based on the lack of comparative data between each drug regime and different dose trials.”
In their evidence, the pharmacologists wrote:
“Monitoring of drug efficacy and safety should be compulsory in order to assure good clinical care and comply with regulations.”
I agree with that sentiment, and I hope that all hon. Members would too.
The right institutions to approve drugs before use and then monitor their safety during use are those that are named in amendment 443. All substances used for assisted dying must be approved through the Medicines and Healthcare products Regulatory Agency and either the National Institute for Clinical Excellence or the All Wales Medicines Strategy Group processes. There are significant risks if this rigorous process is not undertaken. The drugs used for assisted dying must be tested to ensure that they are safe and effective for use in assisted death.
I am very sorry to intervene on the same point as the hon. Member for Spen Valley, but clause 28 is not about the formulation of the drugs or their approval; it is about the administration of the issuing of the drugs by a pharmacist or otherwise. I am sorry if I am misconstruing the hon. Gentleman, but I think he might be off on a bit of a tangent, on a debate that, as the hon. Lady said, we had earlier. As I say, this clause is about the bureaucratic process of the issuing the drugs, not about their formulation or approval.
In responding to my hon. Friend the Member for Sunderland Central, I appreciate that we do not want to put too much detail in the Bill, but with some of the commitments that we have made as a Government on collecting data we need to go further. That is for the simple reason that our equality laws are not right when we look at other issues, such as the gender pay gap.
Sarah Sackman
I do not have a lot to add, but I point out that, as the Bill stands, clause 34 requires the chief medical officer to, among other things, submit an annual report to the relevant national authority on the operation of the Act. Amendment 382 tabled by my hon. Friend the Member for Spen Valley would make the voluntary assisted dying commissioner responsible for that function instead. Amendment 274 would require that the report under clause 34 contains an analysis of the additional information to be collected under new clause 10 and amendment 273. I remind the Committee of that because we are discussing what information should be gathered, and at what point in the process. There is then the monitoring, reporting and co-ordinating function performed by the voluntary assisted dying commissioner, should those later amendments be passed.
My assumption is that once a commissioner is appointed, and in drawing up the regulations and guidelines for reporting, there will be consultation between the Government and the commissioner about what the commissioner actually wants to report on. From what the Minister is saying, I assume that, unless we collect the data, the commissioner will have nothing to say in their report.
Sarah Sackman
I thank the right hon. Gentleman for that intervention, and that is exactly why I made that point. One of the design features of the commissioner model is the monitoring function, through which they will undertake annual reporting and an assessment of patterns in the practice, should the legal regime come into force. That is exactly how I anticipate it working.
The commissioner can also be self-correcting and say, “We need to see more information on this because it is a concern. We have this equalities data”—or whatever data we have collected—“and we need to see more on this aspect, because this pattern is a concern to us or it would help to illuminate how the practice is operating.” That is all I wanted to add, because one has to appreciate the operation of the regime as a whole.
Obviously the hon. Lady is a London MP, but I gently point out that particularly in a London context—and in other urban areas—someone’s postcode is actually a very poor indicator of socioeconomic status. I represented central London as a London Assembly member for eight years and, in large parts of central London, there is social housing in the same postcode as extremely expensive houses running into the many millions.
I know: the Barnes ward in my constituency is one of the most unequal wards in the country, so I fully appreciate the right hon. Gentleman’s point. As I say, that is the socioeconomic indicator that I have for now, thanks to the failings of our predecessors to include it in the Equality Act, but I am open to amendments on Report if anybody has something more compelling. I do think that it really matters that we look at the socioeconomic status of people who are seeking an assisted death, and I welcome feedback—and, as I say, further amendments—on how that particular part of clause 29 could be improved.
Lastly, I included whether someone has a disability, which obviously has come up many times in the written and oral evidence. That is why I specified those characteristics in response to the evidence that we received, and why I am keen to press amendment 273 to a vote.
Amendment 273 agreed to.
Terminally Ill Adults (End of Life) Bill (Twenty-eighth sitting) Debate
Full Debate: Read Full DebateKit Malthouse
Main Page: Kit Malthouse (Conservative - North West Hampshire)Department Debates - View all Kit Malthouse's debates with the Ministry of Justice
(1 year, 4 months ago)
Public Bill CommitteesThe issue is who is commissioning the service. The issue is not the doctors or how they are recompensed for the work that they do, but who is doing the recompensing and what their incentives are. If the process is part of an NHS-provided service where it is agreed that it is a compassionate end of life choice, and where it is properly regulated within the wider NHS service and connects with other NHS services, that is one thing.
If the person commissioning that doctor has any kind of incentive around making a profit—and any profit-making organisation will be incentivised to increase the amount of profits that it makes—then, however carefully regulated, there will be subtle influence, pressure, coercion or persuasion that assisted dying is an option that patients should choose, or possibly not-so-subtle influence, to take the example from the hon. Member for Bexleyheath and Crayford. Under other circumstances, in an NHS model, that may not have been a solution they would have been persuaded to choose. It is that issue of persuasion and of incentives that really troubles me.
I am not clear: is the hon. Lady suggesting that doctors who operate in the private sector are less ethical than doctors who operate in the public sector?
I think I said very clearly to the hon. Member for Stroud that it is not about the doctors. It is about the people who are commissioning them. I absolutely do not believe that about doctors operating in the private sector, who in my experience are often the same doctors as the ones in the NHS. It is about who is commissioning them and who is asking them to carry out this work, and whether those commissioners are motivated by a profit incentive as opposed to the incentive in the NHS to provide the best possible care.
I am sorry if I have failed to understand what the hon. Lady is saying, but under the Bill as it stands, every single stage is supervised by a doctor, even the final moments. I fail to see how the motivations that she seems to be applying to the private sector, malign or otherwise, might affect the conduct of the doctors, given that she accepts that doctors are equally ethical in the private and public sectors, unless she thinks that those motivations are pressuring doctors to behave unethically.
It clearly remains to be seen, but that may be an outcome as we do not yet know what model we are proposing for the delivery of assisted dying. Perhaps doctors will feel pressured to deliver an outcome because that is how the model has been set up. If we have a model that incentivises profits, particularly if we do not have a similar service within the NHS itself, it is quite possible that that will happen. It will not necessarily affect the care that doctors give to patients at the end of life, but the point is that we do not know.
We cannot fully explore that matter in Committee, because we do not have the full clarity of exactly how the process will be delivered, so we cannot examine the proposed model and identify its potential risks and pitfalls. That continues to be a real concern. Perhaps doctors will feel that pressure; perhaps the service will be precisely designed to encourage them to, for example, diagnose someone with having fewer than six months to live even when it is a slightly more subjective judgment and a different doctor operating in a different system may come to a different view.
Tom Gordon (Harrogate and Knaresborough) (LD)
I am just trying to wrap my head around the argument. We already know that integrated care boards and other commissioning bodies have incentives given to them when they commission services, so it would be in their interests to diagnose or produce a demand for a service in a particular area. There is already an analogous situation within the NHS; I do not see how that is any different.
Lewis Atkinson
No, I do not agree with the hon. Member, and I will tell her why. The reality is that the shape of the health provider landscape is different in different parts of the country. For example, in Wolverhampton, there has been a significant amount of vertical integration, such that in many cases GP services are part of the NHS provider trust. Therefore, those amendments that would prohibit any public body from participating would explicitly prohibit GPs in Wolverhampton from that provision. Elsewhere, some hospices—a small number—are provided directly by the NHS. Given the history of the hospice sector in the UK, there is clearly a strong voluntary and charitable element of that provision, which is entirely right, but that varies in different parts of the country.
To return to the point made by the hon. Member for East Wiltshire, there are some hospices and end-of-life providers who have made it known that, if this law passes, they may wish to explore whether they will provide such services. Equally, others will not. This goes back to the conscience debate that we had last week. There will be no obligation, so a hospice in one part of the country may well say, “Yes, we wish to provide this service as an option to our patients,” whereas a hospice in another part of the country might say, “We do not.” We need to get past this metropolitan mindset, whereby ll the providers are within easy travelling distance from each other.
The hon. Gentleman is making a strong point. Surely what should be at the heart of the organisation’s disposition is consideration of the condition and circumstances of the patient. Whether on the cancer ward, in the hospice or at home, the health service adapts, and has adapted with all sorts of treatments, to dealing with the different circumstances of the patient that it encounters. We must have a system that is flexible enough to allow it to do so for this.
Terminally Ill Adults (End of Life) Bill (Twenty-ninth sitting) Debate
Full Debate: Read Full DebateKit Malthouse
Main Page: Kit Malthouse (Conservative - North West Hampshire)Department Debates - View all Kit Malthouse's debates with the Department of Health and Social Care
(1 year, 4 months ago)
Public Bill CommitteesThe Government have worked with my hon. Friend the Member for Spen Valley on amendment 546 and new clause 40, which are consequential and linked to other amendments to clause 42, relating to the commencement of the legislation.
New clause 40 would require the Secretary of State to prepare, publish and lay before Parliament a report about progress made towards implementing the Bill, and the Secretary of State’s plans for implementation in subsequent reporting periods. The reporting periods are one year after Royal Assent, and every six months thereafter, until the sixth and final reporting period. Amendment 546 provides that new clause 40 will come into force on the day the Bill is passed.
I wonder whether the Minister would entertain a suggestion. I think the extension to four years is going to cause some concern and questions in the House on Report and Third Reading. Given that the Minister is committing to reporting on a six-monthly basis, it would be helpful if the House had a broad plan against which the Government were reporting on implementation. Does the Minister think it is a good idea, on Report or Third Reading, to come forward with an outline timetable, worked up as part of the general assessment of the project?
That sounds like a sensible approach. New clause 40 sets out the report about progress made towards implementing the Bill. If I have correctly understood what he is saying, the right hon. Gentleman is looking for more flesh on the bones of what that plan should be and look like.
Essentially, I was trying to point out that four years is obviously a backstop. It may well be that the Government are able to deliver the service in advance of the four-year deadline. It might be helpful at later stages of the Bill’s progress—certainly in the Lords—if the Government are able to give an indication of what they think the likely timeline might be. Admittedly, there will be flexibility in there, but that might assuage some of the concern raised by the hon. Member for Stroud that four years is quite a long time. The commissioner is going to be appointed at the 12-month mark, and that might accelerate some of the work, but I think having an indication may be helpful for Members.
I get what the right hon. Gentleman is saying now: in essence, there will be different parts of the implementation period that will be done at different times. Data may take so long, training may take so long, and so on. I think what the right hon. Gentleman is asking for is a breakdown of which parts of the Bill could be implemented—
Yes. I am very happy to take that up with officials and I will come back to the right hon. Gentleman in short order.
New clause 20 would introduce a requirement on the Secretary of State to lay an annual report in both Houses of Parliament on the impact of the Bill. The report would include the effect of an assisted dying service on access to healthcare, palliative care and assisted dying, and an analysis in relation to people’s socioeconomic status and protected characteristics. That report would sit alongside the existing requirement in clause 35 for a report five years after the Bill is passed. The new clause would require that the first annual report be laid before each House on its first sitting day after one calendar year from the passing of the Bill. The Committee may wish to note that, given the 12-month timeframe, the reporting requirement may start before implementation is complete.
Protected characteristics are defined in section 4 of the Equality Act 2010; however, socioeconomic status is undefined in the new clause, and is not defined elsewhere in the Bill. It is therefore not clear what the assessment of those factors is intended to involve, and it may be difficult in practice for the Secretary of State to determine whether they have fulfilled this duty.
New clause 28 would introduce a legal requirement on the Secretary of State to undertake an assessment of the Bill within 12 months of it being passed, and to publish and lay a report of that assessment in both Houses of Parliament. The Committee may wish to note that, given the 12-month timeframe, the reporting requirement may start before implementation is complete.
Under the new clause, the assessment must cover the extent to which the Bill is on course to meet its aims; the state of health and care services for persons receiving palliative and end-of-life care; the implications of the Bill on those services; any emerging concerns relating to the operation of the Bill; and any steps the Secretary of State proposes to take in response to those concerns. That requirement is in addition to clause 35, which requires a review by the Secretary of State at the end of the initial five-year period after the Bill is passed. That new requirement is wider in scope, and would be required after one year.
Palliative and end-of-life care services are broad, holistic services, provided by a range of professionals and providers—generalist and specialist—across the NHS, social care and voluntary sector organisations. Therefore, measuring the provision is difficult, as relevant consultations and tasks are not always coded as palliative or end-of-life care. Commissioning and contracting processes do not consistently support data collection, with block contracts and grants commonplace. It is also practically difficult to identify the Bill as the catalyst of the implications on those services over the specific period, as they are affected by multiple factors.
Question put and agreed to.
Clause 35, as amended, accordingly ordered to stand part of the Bill.
Clause 36
Disqualification from being witness or proxy
That is indeed my understanding. These would be minor changes, rather than major, fundamental changes to the Bill.
I have seen these clauses in standard legislation before. As I understand it, they are often put in place where new organisations are being established and there may be knock-on effects—for example, where an organisation decides to give itself a particular name or changes its name from the one that is in the Act. It tends to be those small things where powers are vested in the Minister effectively to tinker and sandpaper at the end, to get the organisational structure correct.
That is a good description of it. The wording used in the clause is “consequential and transitional provision”, which is another way of saying exactly what the right hon. Gentleman has described.
Question put and agreed to.
Clause 38, as amended, accordingly ordered to stand part of the Bill.
Clause 39
Regulations
I am grateful for that intervention, but the crucial point is the vote in Parliament, so that MPs get not only an opportunity to consider whether sufficient progress has been made—as per new clause 40—but a vote to confirm that they are content for the legislation to proceed.
I am sure the hon. Lady understands that a vote of that nature would not necessarily be binding, or compel the Government to do anything, but there would be other opportunities for the House to consider the legislation in debate and vote on it. She knows that there are a number of ways to do that, including via a Backbench motion or an Opposition day.
I refer to my earlier comments: there are few enough opportunities for MPs to have any further control over how this legislation is going to be implemented. I do not think that it is asking too much to want a further opportunity to be mandated, and not left—dare I say it—to the vagaries of the Backbench Business Committee. There are Opposition days, but this is cross-party, conscience issue. I can speak only for my own party, but I think there are a number of other issues that the Opposition would want to use those debates to address. Taken together, these amendments would ensure that Parliament is properly informed if the Secretary of State decided to commence the scheme before the four-year auto-commencement deadline.
I want to address how the Bill will be implemented in Wales. On 23 October 2024, in anticipation of the Bill being published, Senedd Cymru debated a motion calling on the Welsh Government to
“a) support the principles of assisted dying; and
b) support Westminster parliament to introduce a compassionate assisted dying law in England and Wales.”
The motion was defeated 19 to 26. Among those who voted against were a number of Welsh Government Ministers, including First Minister Eluned Morgan, and I believe that in three political parties—Labour, Plaid and the Conservatives—there was a majority against. In that context—as Professor Emyr Lewis, who gave evidence to the Committee, has stated—it would be constitutionally wrong to pass the Bill without the consent of the Welsh Senedd. He believes that this is different from other instances where legislation has been passed by Westminster against the will of Wales:
“This is not the equivalent, for instance, of trying to re-base the UK’s internal markets following the chaos of Brexit. When the UK Parliament passed Acts ignoring refusal of consent from Cardiff or Edinburgh, it did so in what were considered to be the interests of the economic coherence of the UK. This Bill, however, is a different sort of creature. It is a Bill which would bring about a profound change in the law relating to life and death, where there are strongly held (and expressed) moral, religious and cultural views against as well as in favour. How can it be constitutionally appropriate for the UK Parliament to pass such a Bill for Wales, when the Senedd has indicated its opposition by democratic vote after a thorough debate?”
My hon. Friend is making a good point, but I want to make a constructive suggestion. It might be worth our having a look at Switzerland, where advertising is actually banned but the provision of information is not. It is a fine line, but the Swiss seem to get the balance right.
Rebecca Paul
I thank my right hon. Friend for that point. He is absolutely right that we can learn from what other jurisdictions have done, leverage that and create an amendment or new clause that works for what we are trying to achieve, and know that it will target the advertising that we seek to target.
Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateKit Malthouse
Main Page: Kit Malthouse (Conservative - North West Hampshire)Department Debates - View all Kit Malthouse's debates with the Ministry of Justice
(1 year, 1 month ago)
Commons ChamberThose of us who have come here today to support the Bill do not speak lightly of life and death, as some have accused us: we come here to recognise that this House has a responsibility to draw lines where there are none. Many of us have campaigned for many years, as the Mother of the House, the right hon. Member for Hackney North and Stoke Newington (Ms Abbott), said, to give voice to dying people—not because they want to be rescued, but because time and again they are begging us for mercy.
It is worth reiterating that this Bill is about not choosing death but how to face death when it is already at the door. It is about that final chapter of life—that short chapter. As many of our constituents have told us time and again, it is a chapter that they write in pain, fear and desperation.
We are here today to ask a simple question: in essence, is the law, in those final, often agonising moments, to be a barrier? Are we to be a barrier, or are we here to be a companion, to assist those people to fulfil their dying wishes? I believe in autonomy—I believe in dignity—but, more than that, I believe in compassion governed by care, not chaos. That is what the system lacks.
Right now, friends, as the hon. Member for Spen Valley (Kim Leadbeater) said, we live with the cruel illusion that doing nothing is neutral. It is not. Those who have objected to the Bill are conspicuous in not saying that they accept the status quo for however long the Bill may take to reappear if it fails. We have heard, again and again, stories of people forced to travel abroad to die in lonely circumstances. We see loving spouses prosecuted for holding the hand of someone they have loved for 50 years. We see lonely suicides in quiet suburban bedrooms: lives ended not because of terminal illness, but because of a lack of legal options.
The Bill brings order where there is confusion; it brings safeguards where there is silence; and it replaces secrecy with structure and fear with honesty. Notwithstanding the claims made today and elsewhere, it has been built in the right way. This House has taken its duties seriously, in all its forms of legislation. The Bill has gone through detailed scrutiny in Committee and concerns about coercion, training, eligibility and oversight have been met head on and addressed through carefully considered amendments. The panel model that we have now is shaped by those concerns. To ensure the right expertise, legal oversight and continuous consent checks are in place from beginning to end. This is how Parliament should legislate: carefully, collaboratively and with humility in the face of complexity.
To those who worry about coercion, I would say that the greatest risk of coercion is under the status quo. Today there are no checks, no panels, no oversight. We do not know who is choosing freely because there is no system to ask and no conduct to examine. We have heard the argument about a slippery slope, and I would say this. This law is very tightly drawn. There is no constitutional pathway here for expansion by stealth. Any change would require this House—us—to decide again. It cannot drift. It cannot slide. It is anchored in law and in the authority of this place.
To those who talk about misdiagnosis, I say that the Bill requires two independent doctors, clear clinical criteria and a final check at the point of delivery. Even then, the person must still be mentally competent and willing at every step. The answer can be no, but at the last—at last—there will be the possibility of a choice. To those who ask, often movingly, what if the patient lives longer than expected, I would say, “Good—they live.” This law does not force a single death. It simply allows a dying person to decide when enough is enough.
Madam Deputy Speaker, I will finish with this.
I have sat with dying friends. I have watched the slow unwinding of bodies that once held vigour, humour and pride. I have seen families trying to honour the unspoken wishes of someone too far gone to speak. Finally, I will say this. We do not honour life by prolonging suffering. We honour life by giving it meaning and power. The one thing that dying people ask for in their agonising final moments is control over the disease that is destroying them. The status quo, my friends, is completely unacceptable. Whatever you think of the Bill, it is indisputable that it is an improvement on what we have now, and I urge you to support it.
I stand at the Dispatch Box alongside the Minister of State, Ministry of Justice, my hon. and learned Friend the Member for Finchley and Golders Green (Sarah Sackman), not as the MP for Aberafan Maesteg, 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—but as the Minister responsible for ensuring that the Bill, if passed, is effective, legally robust and workable.
I thank Members across the House, on both sides of the debate, for their consideration of this legislation through its parliamentary stages and for their thoughtful contributions. I particularly thank the members of the Public Bill Committee for their detailed scrutiny over more than 29 sittings and 80 hours. This Bill has received more parliamentary time than most Government and private Members’ Bills, and the debate has been respectful and well considered throughout.
It is worth noting, of course, that the subject has received extensive and detailed consideration over a number of decades, both in this House and the other place, as well as beyond Parliament. Many Members will recall that the Bill before us today follows many years of examination and analysis, including reports such as the inquiry of the Health and Social Care Committee in 2023 and the accumulation of evidence from other jurisdictions. I would like to pay tribute to colleagues and campaigners on both sides of the argument for their contributions to this profoundly important conversation.
I will make some brief comments about the most significant alterations to the Bill since its introduction, from the perspective of their importance to the technical and legal workability of the legislation. The scheme set out in the Bill now includes assisted dying review panels. Multidisciplinary panels would grant a certificate of eligibility if they were satisfied that all the relevant requirements had been met. The panel would have to hear from the person seeking assistance, at least one of the doctors, and any other relevant persons. They would be responsible for monitoring and reporting on the operation of the Act, a role that was previously assigned to the chief medical officer. The commissioner would also appoint a dedicated board to advise on the impact of the Bill on disabled people.
The Bill’s commencement clause has been amended so that any provisions that have not yet come into force will automatically do so four years after the Bill is passed. Specific training requirements for doctors playing a formal assessing role under the Bill have been added. There is now provision for an independent advocate to support qualifying persons to understand their options for end-of-life care and the process under the Bill.
In terms of employment protections, amendments that have been made on Report mean that no one is under any duty to participate in the provision of assistance in accordance with the Bill. There are also now employment protections to protect employees and other workers from being subject to any detriment from opting in or opting out of providing assistance under the Bill, and to protect employees from dismissal.
It just falls to me to thank all hon. Members once again for their extremely valuable contributions to this sensitive debate, and to reiterate that should it be the will of Parliament for this legislation to pass, the Government will ensure the safe and effective implementation of this service.
claimed to move the closure (Standing Order No. 36).
Question put forthwith, That the Question be now put.
Question agreed to.
Question put accordingly, That the Bill be now read the Third time.
Terminally Ill Adults (End of Life) Bill Debate
Full Debate: Read Full DebateKit Malthouse
Main Page: Kit Malthouse (Conservative - North West Hampshire)Department Debates - View all Kit Malthouse's debates with the Department of Health and Social Care
(1 year, 2 months ago)
Commons ChamberI refer the hon. Lady to the impact assessment, which is of course not a forecast but a set of scenarios. In it, detail is given on expected numbers and the capacity of the system to deal with the service.
Amendments 13 and 82 to 85 relate to the appointment of the voluntary assisted dying commissioner and panel members. The amendments would put the process for the appointments out of kilter with standard practice for public or non-judicial appointments and could significantly limit the pool of individuals available. Amendment 86 would give the panel the same powers, privileges and authority as the High Court, which are significant in scope and are set out across different court rules and legislation. It is unclear how those would apply to panels in practice. They may be unworkable given that the panel is not designed to be a court.
New clause 4 and amendment 28 would put various responsibilities on the chief medical officers for England and Wales. Imposing duties in primary legislation on an individual civil servant may cause difficulties in the future if the role does not exist or if the title changes. It is usual practice for duties in primary legislation to be conferred on the Secretary of State, who may decide to delegate to the chief medical officer.
I would like to briefly respond to a number of questions directly asked of the Government. The hon. Member for South Antrim (Robin Swann) asked about medicines regulation in Northern Ireland. The amendments will not affect the application of EU law; they will instead ensure coherence between the different legislative frameworks. The sponsor will lead engagement with the devolved Governments, supported by officials.
The hon. Member for Richmond Park (Sarah Olney) asked about the equality impact assessment. The EQIA considers the nine protected characteristics alongside socioeconomic background, geography and mental health. The hon. Member for West Worcestershire (Dame Harriett Baldwin) asked about the Suicide Act and advertising. I can confirm that encouraging or facilitating suicide will remain a crime under the Suicide Act. On advertising, new clause 14, if passed, would oblige the Secretary of State to make regulations prohibiting certain forms of advertising that promote voluntary assisted dying services. The exemptions to that, which may be provided under subsection (2), will not cut across the criminal offences elsewhere in the Bill or in the Suicide Act.
I hope that those observations were helpful to Members in their consideration of the technical workability of the amendments that we have debated today.
claimed to move the closure (Standing Order No. 36).
Question put forthwith, That the Question be now put.
Question put and agreed to.
New clause 13 accordingly read a Second time, and added to the Bill.
New Clause 14
Prohibition on Advertising
“(1) The Secretary of State must by regulations make provision prohibiting—
(a) the publication, printing, distribution or designing (anywhere) of advertisements whose purpose or effect is to promote a voluntary assisted dying service;
(b) causing the publication, printing, distribution or designing of such advertisements.
(2) The regulations may contain exceptions (for example, for the provision of certain information to users or providers of services).
(3) Regulations under this section may make any provision that could be made by an Act of Parliament.
(4) But regulations under this section—
(a) may not amend this Act, and
(b) must provide that any offence created by the regulations is punishable with a fine.
(5) In this section “voluntary assisted dying service” means—
(a) any service for or in connection with the provision of assistance to a person to end their own life in accordance with this Act, or
(b) any other service provided for the purposes of any of sections 5 to 27.”—(Kim Leadbeater.)
This clause imposes a duty to make regulations prohibiting advertisements to promote services relating to voluntary assisted dying under the Bill.
Brought up, and read the First and Second time.
Amendment proposed to new clause 14: (b), in subsection (2), leave out from “exceptions” to the end of subsection (3) and insert—
“( ) for the following—
communication made in reply to a particular request by an individual for information about a voluntary assisted dying service;
(b) communication which is—
(i) intended for health professionals or providers of voluntary assisted dying services, and
(ii) made in a manner and form unlikely to be seen by potential service users.
(3) Regulations under this section may make provision that could be made by an Act of Parliament, but may not amend this Act or the Suicide Act 1961.”—(Paul Waugh.)
This amendment would limit the exceptions that can be created to the advertising ban set out in NC14 and also provides that regulations cannot amend the Suicide Act 1961, which includes the offence of assisting and encouraging suicide.
Question put, That the amendment be made.