Kim Leadbeater MP: speeches

Speeches

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fifth sitting) · Hansard source

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  Q Dr Hussain, I hear your concerns about the broader impact on society, and certainly in terms of ethnic minorities. Have you seen any evidence that that is an issue in other jurisdictions? The evidence we have heard is that people from ethnic minorities are underrepresented in assisted dying statistics, meaning that potentially there is discrimination the other way, in that they are not accessing it in the way that perhaps people from better-off backgrounds are. Dr Hussain: That is a really important point. Over-whelmingly, going into the communities I have worked with for a long time in Bradford, I have found that the big impact post covid is this big fear—fear that this will impact them, and fear that it will result in them not only not accessing our services and therefore having poorer deaths, but also not accessing other healthcare intervention. As I said, the people I spoke to identified a small number of people who would want it, but they were structurally disadvantaged. Again, we need that clarity. If people are structurally disadvantaged, and they are doing this because they cannot get culturally competent and trauma-informed mental health support and social support, do I offer them assisted dying or not? That is a really important issue. In terms of them having inequitable access, I am not actually against it, but the biggest impact I see in a UK context post covid is this massive fear that they have, and I am really worried about that. I want to offer better support to structurally disadvantaged people who want this. Issues were also identified about the prognosis of people who want to go down this route. They are more likely to die of conditions that are harder to prognosticate, such as cardiac disease, which has a fluctuating trajectory. There were concerns about how families will be involved. Families are really important for decision making, and our research shows that they are the safeguard against discrimination, so we need to find a way for them to be involved. There were also worries about coercion and mental health. People brought that up to me spontaneously, saying that it was often missed in their communities or misunderstood by health and social care services.

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fifth sitting) · Hansard source

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  Thank you.

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fifth sitting) · Hansard source

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  It will be a question. The Bill is very clear, in clause 2(3), that disabled people are not within its scope, but I would be really interested to know if there is anything you think we could add to make that clearer—I put that to Fazilet, too—because I want to be really clear about that, and I want to provide any reassurance that I can. My main question is to Lord Sumption. You acknowledge the importance of autonomy and dignity at the end of life, and indeed article 8 of the European convention on human rights talks about bodily autonomy and self-determination. I would be interested to know how you came to that conclusion on the issue of assisted dying. You also described the Bill as over-engineered, bureaucratic and impersonal—thank you for that. Would you agree with the chief medical officer, then, that we should avoid making the choice of assisted dying a “bureaucratic thicket” and keep the safeguards robust but simple? If so, what do you think that could look like? Lord Sumption: I do agree with that. The chief medical officer, at least in the extract from his evidence that I saw, was not very specific about how the thicket could be loosened a bit. I have made one suggestion that I think would make a significant difference, which is the removal of the clause 12 stage. That is the principal point. The medical input from the two referee doctors is an important but private and informal process, whereas the proceedings of a court are extremely public and formal, and also productive of a very considerable delay. That would make a considerable difference in the direction that you have been talking about.

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fifth sitting) · Hansard source

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  Q On that point, do you think there could be better training around coercion?

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fifth sitting) · Hansard source

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  Sorry. Dr Hussain: I really liked what you said yesterday; we need gold standard training. The thought yesterday about what happens with capacity made me think straight away about cases in the last few months where we, as a palliative care team, thought that someone had capacity, and the other team did not. That happens all the time in palliative care; it is a really frail population, and it is really complex. The safeguards for assisted dying must be higher, so I like the idea of gold standard training and, crucially, gold standard implementation and evaluation. I looked yesterday to see what the evidence is that capacity assessments are great and fine, and there was none. I tried to look at whether there are differences for different communities, but we have not even looked at that. However, we do know that people who are racialised as black are 3.5 times more likely to be detained under the Mental Health Act 1983, so the chances are that there are discrepancies there. Similarly, with coercion, do we know if safeguarding training is absolutely fit for purpose? We all see stories in the newspapers every year in which people who have come in contact with healthcare professionals who have had this safeguarding training end up dying. It is not fit for purpose, and we need to have a gold standard. Perhaps that will filter out and bring everyone else up, but, with my academic hat on, I would say that the implementation gap is the biggest thing. In palliative care, we have been trying for a long time to train up people who are not palliative care specialists. We need to be thinking about the implementation of that in a system under pressure. We also need to think not only about what the training is, but about how we implement it and, crucially, evaluate it, so that we can be confident that it is safe.

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fifth sitting) · Hansard source

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  Q Baroness Falkner, do you want to come in on the point about how we could make the Bill more robust in terms of those protections? Baroness Falkner: Can I just pick up the point about section 6 of the Equality Act 2010? That is clear, but it was not written with the intention of applying in these circumstances; it is a very narrow definition of disability. Excluding disabled people in that sense is a good thing and we support that, but it does not go far enough in our view. Fazilet Hadi: I do not know how you can exclude disabled people, because there is a huge overlap between disabled people and people who will at some point become terminally ill. I find that challenging. I do not think that separation can happen in the letter of the Bill. There will be disabled people who are also terminally ill people. On the wider point about what that will mean for other disabled people, who this Bill does not cover at all, I agree that the Bill is trying to circumscribe what it covers, but in the real world is it very likely that it will not have implications for the way people, doctors and health authorities think about disabled lives? I understand that the Bill’s drafters do not have that intention, but again, in the real world, where disabled people already face challenges in their lives being valued, we will come across that shift in culture more widely than this Bill wants to happen.

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fifth sitting) · Hansard source

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  Q Thank you, witnesses, for joining us this afternoon. The good news for us all, on the palliative care conversation, is that we have in the room the Minister responsible for palliative care, who has heard those arguments loud and clear. Indeed, Second Reading showed that there is a huge amount of good will in the House for improvements in palliative care. I agree with you, Mr Royston, that it is not an either/or. We have to do both, and I think this House is very keen and prepared to do both. Hopefully, the implementation period will provide some reassurance, because this will not happen for a number of years. We have got time to make those improvements alongside each other while still giving terminally ill people the choice that I firmly believe they deserve. Dr Neerkin, on that point, yesterday we heard a range of views from palliative care professionals, and there are a range of views within the sector around assisted dying. Could you tell us a bit about your views as a result of your more than 25 years of experience as a consultant physician in palliative medicine? Dr Neerkin: First of all, death and dying is not owned by palliative care. We are hearing a lot about palliative care, but we have also heard from GPs that they deal with a lot of death and dying, as does every other speciality. So first of all, we do not own death and dying. I think a lot is being put on palliative care, and palliative care is not a panacea for everything at the end of life. This is multifactorial; it is about good medical care, good social care, good care in the community and everything that can be provided for people of all backgrounds and all abilities and disabilities. I think that is really important to begin with. I am very lucky to work in a trust that has a huge amount of backup for palliative care, interventional pain control and psychology. We have great backup to provide great end of life care, which is not available all across the country. Despite that, there is still a need for assisted dying, because that does not answer every single question. What I have seen over the years is that people want some control when they lose all other control and they do not feel dignified. It is not just about being a burden; they do not want their loved ones to see them suffering and to lose all dignity in front of their loved ones, as they are doing. As we see in other countries, people want to have that choice. It does not necessarily mean they will take it up in the end, but to know that they can choose assisted dying is incredibly important to them, and it gives them advocacy and a bit of autonomy and control where they lose control. Those are the questions that are brought to me when people say, “Can you not just hasten this death?” People just want to have the conversation around it. Even if I were to say to them, “If I had a tablet here and now that I could give you, would you take it?” probably eight out of 10 times people would say no, because inherently people have a will to live. We are talking very much about dying and people wanting to die, but most people I treat and most families really want their loved one to live. It is just about being able to have the choice and feeling that, if things become unbearable for them, or they feel they have lost all dignity and all control in a situation, they have got a bit of control left.

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fifth sitting) · Hansard source

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  Q If I may, I have a question for Professor Esmail, but I will make an observation—I think I have a duty to do this, and to be the voice of some of the people we are talking about this afternoon: the terminally ill people who are dying. We talked a little bit about suicide earlier, but it is clear to me that the terminally ill people I have met would not describe themselves as suicidal at all. They want to live, but the fact is, they are dying—that is a very important distinction to make. Also, Richard, I would love to know your thoughts. I hear what you are saying about protections for older people, but as you rightly said, it is fair to say that not all older people are vulnerable, and that a lot of older people support a change in the law. Also, not all older people are terminally ill—I think about my grandad, who asked me to take him to Switzerland. I have thought about him a lot in recent months, but he would not have been covered by the Bill because he was not terminally ill; he was just old. Those are just a couple of observations, which you can come back on if you wish. Professor Esmail, you acknowledged that during your time as a GP, you went on your own journey on assisted dying. I think you described yourself as being implacably opposed, but you also stated that the law at the moment is a mess and does not protect anyone. Can you tell us a little about that journey and how you came to that conclusion? Professor Esmail: With the Shipman inquiry, I realised that there were real gaps in the process. Dame Janet Smith put in many safeguards about end-of-life care. But it became apparent to me that in terms of choice, we did not have any safeguards. My own experience was of looking after someone who had a terrible cancer of the mouth and had pleaded with me before. He declined surgery; he said that he knew what he was going to do, that he would say his goodbyes and everything else, and that at some point he wanted to end his own life. He asked if I could help him to do that. Of course I could not, and explained why. I promised him that I would do as much as I could to alleviate his suffering. It is very graphic—it is awful. You basically choke; you cannot swallow; this thing just grows into your mouth and so on. I asked myself, “What am I achieving?” He was going to die—he knew that he was going to die. I asked myself, “Am I achieving anything by just saying, ‘No, you’ve just got to go through this process, because there is something about suffering that everyone has to go through, and it is part of life’?” I just said to myself, “This is wrong.” When I investigated it more, I realised that you see this: people make the choice about going to Dignitas. As a doctor, they would come to me sometimes and say, “Can you fill in my medical form?” That put me in a very difficult position. Actually, it is against the law to do that because I am assisting someone. The Director of Public Prosecutions has said that they will not always prosecute people, but nothing is clear about this. We know from surveys that Dignity in Dying has done that something like 600 people take their own lives because they don’t want to go through the suffering. But it is all behind closed doors, in sometimes very violent ways. When you look at things like that, you say, “How is the law protecting anyone at the moment?” I have come to the conclusion that we don’t have a legal framework, and because of my research on patients I would say that it is actually very unsafe. So, paradoxically, a law that talks about these things, which produces safeguards, is a huge improvement on where we are at the moment. That is the first point. The second point I would make is that, as the Committee has talked about, there are already complex decisions. We make them all the time. We assess capacity. If someone comes to us and says, “I want to do a lasting power of attorney,” you need to assess capacity. When a relative says to you, “I have lasting power of attorney; I can speak on behalf of my mother”—or whatever else—you say, “No—I still want to speak to your mother.” There are many areas where the law is quite well defined in that respect. So, we are already doing that. There are very grey areas where people take the decision to refuse treatment. I think it is very difficult. We seem to be happy to be saying, “All right, we will support you, but you agree not to take any food and water and you will dehydrate to death,” or if someone has end-stage motor neurone disease and says, “I want you to pull my tube out,” to say, “We will sedate you while we do that.” So, these things happen already. And from my understanding, the law will bring a clear legal framework for doing that. And actually, I think it will protect doctors and patients in the decisions they make. That is why I think we have to move now. We have put in some safeguards. Many doctors are very good at assessing this—in terms of mental capacity, for example. We are doing it all the time. It is an integral part of our training. I am not saying it is perfect. I take the points about coercion, and it is difficult. But again, we are becoming more aware of this as a society. Typically, as GPs, we are given training about trying to identify domestic abuse, how to deal with that and so on. I think things are improving. I am not saying that there is no coercion; we don’t know. The point is that at the moment, we have no monitoring. If we have a legal framework, we will know how many people have chosen assisted death; we will know that they have gone through a process—we will know all these things. It just makes it much more clear and open for everyone. I think it will make the quality of the conversations we have with dying people even better as well. There are many, many reasons why I came to that conclusion when I thought about it.

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fifth sitting) · Hansard source

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  On a point of order, Mr Dowd. I am slightly concerned that we are having a conversation about the process, rather than about the actual Bill. I am not sure whether that is in scope of the work of the Committee.

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fifth sitting) · Hansard source

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  Q Thank you so much for giving evidence this afternoon. Perhaps I can provide a bit of reassurance, Baroness Falkner, on a couple of issues. The first thing I would say in terms of the Bill—

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fifth sitting) · Hansard source

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  Q You raise a really important point. There is a range of different views within the disabled community, and we heard some of them this morning. A professor of disability rights made the point that disabled people also do not want to be excluded from the Bill, because if you have a terminal illness and you are disabled, you should have the same rights as everyone else. I do not know what your thoughts are on that. Fazilet Hadi: I think when it comes down to individuals, as I say, you are not going to be able to work out whether someone is disabled, terminally ill, black—people have so many identities. The issue for us, and the reason we are opposed to it, is not that we do not think that what is happening to people at the end of their lives is difficult—of course it is. But we took the view that we are trying to create a society where disabled people are equal and valued, and in that sense the Bill actually makes it harder for us to reach a disability-inclusive society. We come at it from that view. As parliamentarians, I know you want to look at the problems of individuals, but you also have a responsibility to think about the society we want to create. I and other disabled people feel that we already have an uphill struggle convincing people that our lives are of equal value, and this Bill hinders us in that aspiration and ambition, rather than helping us.

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fourth sitting) · Hansard source

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  Q Thank you for coming to give evidence this morning—it is incredibly helpful. I am going to come back to clause 2 of the Bill, which concerns the definition of terminal illness. I am very clear on who the Bill is aimed at helping and who it is not aimed at involving. The definition says that the person has to have “an inevitably progressive illness, disease or medical condition which cannot be reversed by treatment”. It also says, for the avoidance of doubt, that this cannot be “a mental disorder” or “a disability”. I hear your concerns, and I want to support you and work with you on this. I am keen to know: what else do you want to see in the Bill that would reassure you that this is not about disabled people or people with mental disorders? Dr Griffiths: I am conscious of time, so I will be very quick. My first point would be, why would you stick it at six months then? Why not have it at seven days, for example, as a way to take out our concerns? If you are talking about prognosis, let us go back to Chelsea’s point and the point that I made before. My condition is a neuromuscular condition. I have had meetings with clinicians where some have referred to it as a terminal illness, some have referred to it as a life-limiting condition, and others have referred to it as a progressive condition. The articulation of the ideas and the ways in which we think about conditions show the complexity of the issue. We are talking about terminal illness, and people who are terminally ill do constitute disabled people under the Equality Act, so you cannot make the distinction. If you want to be quite proactive about it, then why not reduce the prognosis timeframe and make it as short as possible to take out the concerns about prognosis, and the concerns around whether individuals are going to live longer or could be facilitated access to alternative treatments to prolong life? I do not understand why we are fixated on a six-month prognosis because, as we have seen in other countries, as soon as you pass the legislation on six months, you will have individuals who say, “Why not seven months? Why not five months?” You will have campaigners who will say, “This does not include me and I have been campaigning for this.” There will be pressure to change and Governments will change. There is no guarantee that you can make that the eligibility criteria will be fixed.

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fourth sitting) · Hansard source

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  I beg to move, That in the list of witnesses set out in the table in the sittings resolution agreed by the Committee on 21 January 2025 and amended on 28 January 2025, leave out “Professor Jane Monckton-Smith OBE” and insert “Hourglass”. Unfortunately, we found out in the early hours of this morning that one of our witnesses is unable to join us this afternoon. Question put and agreed to. Examination of Witnesses Professor Tom Shakespeare, Dr Miro Griffiths, Yogi Amin and Chelsea Roff gave evidence.

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fourth sitting) · Hansard source

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  Q Was it a multidisciplinary board that Dr McLaren set up to look at the safety and quality of voluntary assisted dying? Dr McLaren: This was born out of when we started as a Victorian group. We were very individual and we interpreted the law in our own ways. We complied with it as best we could, but we did not have a centralised discussion board or peer group set up at the time. We have propagated advice through the other states to ensure that there are what we call community practices, where clinicians can discuss their cases and learn from each other. Several months after, from I think June to November, we had no interconnection with other VAD-practising doctors. In November, we had a forum set up where we are able to connect and talk about difficult cases and how we would each interpret them. As the subsequent states came online, we were approached by some of the practitioners from other states saying, “We don’t really want to reinvent that wheel, so can we join your community of practice?” Because it was set up by our state government, they were unable to join, so I saw a gap in terms of creating an organisation where we could propagate that knowledge and not all start from scratch. It initially started as a group of voluntary assisted dying medical practitioners, and we would discuss cases across the board and ask things like, “What would you do under your legislation?” and we all learned from that. Then we were approached by pharmacists, nurses and others involved in voluntary assisted dying provision, including legislators who wanted to contribute to the custodians of the voluntary assisted dying law, who are the people who actually run the projects. That then led to the creation of Voluntary Assisted Dying Australia and New Zealand, which is a multidisciplinary group of predominantly doctors, but we do have nurses, pharmacists and legislators involved. We have had two annual conferences where we discuss issues faced by many of our practitioners. That has been a great resource for people. We are developing standards. We feel that in our legislation there was perhaps too much about instilling what the standards are. We feel as though the appropriate-ness of such things as telehealth should be regulated via standards rather than via legislation, which it currently is in Australia. These are the types of topics we have weighed in on and created position statements for in order to protect the laws that we believe in, uphold and like to think of ourselves as responsible practitioners of.

• 29 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Fourth sitting) · Hansard source

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  Q Thank you for joining us this morning. I am interested in following up on what Dr Mewett said about the relationship with palliative care, which has an important role to play in end of life treatment. What is the relationship between assisted dying and the palliative care world like? Also, I would like to hear a bit more about the multidisciplinary board, which I think you set up, Dr McLaren. What does the multidisciplinary approach look like in your jurisdictions? Dr Mewett: There is no doubt that traditionally palliative care has eschewed any idea of voluntary assisted dying, for a number of historical reasons that I have spoken about in other fora and will not go into now. But it is changing, and there is a general change in attitude, especially among the younger palliative care training doctors and young clinicians, who see this as part of patient-centred care, honouring the patient’s autonomy and choice, while still addressing deeply their concerns and suffering in pain management and so on. That will see a change. I do understand where it has come from. When one looks at it almost forensically, it does not stack up and will continue not to stack up to have someone saying, “Well, VAD is not part of palliative care.” VAD is part of patient choice and it will be part of palliative care ongoing. That will evolve over time. I am sorry but I did not quite catch the meaning of the question about the multidisciplinary aspect, Ms Leadbeater.

• 28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Second sitting) · Hansard source

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  Q On the point about referral, what happens in the case of abortion? That is one of the closest parallels we can get. If we have a doctor who is not comfortable having that conversation, presumably they cannot just leave that person with nowhere to go. Dr Green: What would happen is that the doctor would provide the patient—through their receptionist, through leaflets or through a telephone number—with somewhere they could get the information. You cannot just abandon a patient. They have to be sure that the patient has the ability to do what the patient wants to do.

• 28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Second sitting) · Hansard source

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  Q That is very helpful. Let me turn to when the GMC guidance on arrangements about assistance to die is raised with practitioners. Part of the guidance is that practitioners have to “respect competent patients’ right to make decisions about their care, including their right to refuse treatment, even if this will lead to their death”. I am interested in how that fits in with those very difficult conversations. When a patient executes that right to refuse treatment, are those cases logged? Are they monitored or reported on? Mark Swindells: There was an important piece of case law—I think in the 1990s—that clarified that a patient refusing treatment and subsequently dying is not an act of suicide. You are right that our guidance talks about the importance of a doctor explaining to the patient about the likely course of action in terms of the option for no treatment. Again, that is intertwined with the Mental Capacity Act 2005, and puts a lot of autonomy in the space of the patient, along with the consent case law that we covered before. On the previous point about referrals, our guidance is similar to what Dr Green was saying: in the case of conscientious objection—for example, on abortion—the important point is that, from the patient perspective, they are not left with nowhere to go. If that assists, that may be a principle that helps and reads across.

• 28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Second sitting) · Hansard source

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  Q On the point about reporting, where patients take that right to refuse treatment, capacity must be assessed at that point if a patient has said, “Look, I don’t want any more treatment.” That is quite an important point to assess capacity. Are those cases logged and recorded? Mark Swindells: Yes. It would be important for the patient’s records to cover the points of consent and that the doctor has recorded that they have interacted with the patient that way. I do not believe it is centrally held or collated in any sense like that, but I may be wrong.

• 28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Second sitting) · Hansard source

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  Yes. It sounds as though you are saying that your professionals are trained to have those conversations, which is very reassuring. Glyn, do you want to add anything? Glyn Berry: Just to say that I absolutely agree with Professor Ranger. My experience of working with palliative nurses, and nurses in general, is long, and I have historically had exceptionally positive experiences and continue to do so. I think that we learn from each other, and it is really important that we can have those conversations with the person and ask questions that they might never have been asked before, such as, “What is it that you want?” Professor Ranger is absolutely right in terms of autonomy and the person having control, because once that diagnosis is given, it can be a downward spiral for a person and they feel that they lose control. Patients and families talk about that—about having no control over what is happening. In effect, that is true in terms of what is happening in the disease or illness trajectory, but it is so important to remind a person that they are still the person that they were before that diagnosis, that they will continue to be that person, and that they still have a voice. In both our roles professionally, and alongside other clinicians, that is what we seek to do all the time. That is why a multidisciplinary team approach is so important. Ultimately, we could find that, once you have asked all the appropriate questions and you have put potential safeguards in place following conversations, a person may not choose that particular point to end their life—as you mentioned, Kim—and may continue to live to the end of their natural life.

• 28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Second sitting) · Hansard source

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  Q To that point, in those conversations where patients are making very serious decisions, it is not uncommon that you would seek additional advice from other professions, such as a psychiatrist or possibly a social worker and other professionals, if you felt there was a need to do so. Professor Whitty: The further you go up in the seriousness of the decision, the more you would do that. For example, if you were setting a finger that had been broken, you are not going to wait until a psychiatrist has said that you can do that. Within reason, provided that someone gives consent, you will do that. You will be much more cautious about moving forward with things like open heart surgery or deprivation of liberty if you think there is uncertainty. It should be clear. For the majority of people, it is very clear they have capacity or very clear they do not. There is a relatively small—but important—number in the middle where that is less clear and where additional views are relevant, particularly where there is a question of co-existing mental health issues. The fact of the mental health condition does not in itself mean that someone does not have capacity, but what has to be taken into account is, “Do they have the capacity for this decision at this point in time?” That is how the Mental Capacity Act works.

• 28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Second sitting) · Hansard source

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  Q That is incredibly helpful, thank you. You are absolutely right to bring it back to patient autonomy—patient choice—so that, while putting all the safeguards in place, we are very clear that it is their genuine choice based on what they really want to do. It sounds as though you are saying—

• 28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Second sitting) · Hansard source

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  Q Thank you for coming and giving evidence today, and for meeting with me recently. You both represent organisations that have neutral positions on assisted dying. I am really interested in this multidisciplinary approach that you are talking about, and I think it is a really valuable conversation, so thank you for raising those points. I want to ask a bit more about what this end-of-life conversation looks like in your experience, because you are absolutely right; of all the people who are spending time with patients in their last few months of life, it is often nurses and palliative care social workers. You have a really important role to play. I am also interested in what this would look like in reality. There has been talk of a kind of separation of palliative care and assisted dying, but, actually, I think we should be looking to embrace a holistic approach to end-of-life conversations and end-of-life care, which is what has happened in other jurisdictions. You might have a patient who has signed up for assisted dying but never does it because they have good palliative care and they work with their palliative care experts and specialists. Therefore, I think it is important that we do not try to separate these things. I would like your views on that, but I think that one of the strengths is that having these conversations about death, about dying and about end of life is a really positive thing. Your members have an important role to play in that, so could you talk a little bit about the holistic approach that your members take? Professor Ranger: You are right regarding the conversations and the care around dying. Having those conversations with people around pain management and symptom management is particularly the role of palliative care nurses. With assisted dying, I think the conversation is sometimes slightly different. It is talking more as a nurse in some ways, because the primary reason that assisted dying is often a discussion is a lack of autonomy, not pain. Therefore, the conversation generally tends to go in a slightly different way. Symptom control, and being scared of pain, is understandable, and we absolutely have the ability to get that right for people, but when it comes to seeking assisted dying, the primary reason is usually autonomy, rather than pain and fear of dying. Therefore, in a practical way, I think an experienced nurse or doctor will start to gauge the difference in those conversations, because they are different. I think it is about being really clear around those conversations and really listening to what people have to say, and then having a way to be able to ensure that what an individual wants is something that you have got, and that you listen to. I absolutely agree with Glyn about safeguards and all the things that we absolutely need to make sure are there, but the whole point of assisted dying is not to be paternalistic, but to respect autonomy. Whatever safeguards we put in with that, we have to be really careful not to ignore that right of autonomy, which is primarily what this Bill is trying to preserve. I think it is about being really vigilant and listening. A primary role of a nurse is not to advocate their personal view, but to really listen to somebody else and to ensure that what they want is pursued. In all that discussion, it is really important that that does not get lost.

• 28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Second sitting) · Hansard source

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  Q Exactly, so although the terminology of “refer” might not be quite right, are we saying that we have got to provide that patient with a course of action? Dr Green: Yes. It is the “referral” word that is problematic for us.

• 28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Second sitting) · Hansard source

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  Q Thank you for coming to give evidence this morning, gentlemen. I would like to pick up on coercion and capacity, because they are two really important points in the Bill. I would like to know a little more about the work that doctors and nurses do to check for coercion and assess capacity when patients are making really important decisions and choices at the end of life, but maybe in other contexts as well. The Bill refers to the Mental Capacity Act. That Act is a big piece of legislation, but I am conscious that there is only a short reference to it in the Bill. Is there anything we could add to the Bill that would improve the robustness of the reference to mental capacity? What does it look like now, and is there anything we could add? Professor Whitty: Duncan, why don’t you take the first bit and I will take the second? Duncan Burton: In terms of looking for signs of coercion, all of our nursing and clinical staff have safeguarding training, which already looks at things like whether people are under financial coercion or other forms of abuse. That training is already in place and it is extensive across the NHS and social care. If the Bill is passed, we will need to look at how we strengthen that training in relation to spotting the potential signs of coercion in this space as well. Given that that mechanism is already in place, I think that would be an extension, so it is important that we factor that in. I am also mindful, given the scale of colleagues we have working across health and care, that the time between the Bill being passed and its implementation is sufficient that we enable everybody to receive that additional training, if it is required. Professor Whitty: In terms of strengthening the Bill, as a practitioner, I was relieved that the decision was for the Bill—if it stays this way—to stick with the Mental Capacity Act, and that was for two reasons. First, that Act is used up and down the country by doctors and nurses every day; they know it and they understand it. Although, as you say, it is a large piece of legislation, it is one that people have worked through in practice multiple times. If you ask six or seven doctors, “Does this person have capacity?”, in almost all cases you will get six or seven identical answers, because people are used to using it. It additionally has the advantage of being tested in the courts. That has gone as far as the Supreme Court, and the various ambiguities that were inevitably in the legislation have been clarified by senior judges. Therefore, to practitioners like me, it feels like a piece of robust and predictable legislation. Within the legislation, it is very important that there are some situations where you will need to call for additional assistance. For example, if someone has a co-existing mental health condition, you will probably want to ask a psychiatrist additionally whether that condition is interfering with the decision taken to the point that someone loses capacity for this very important decision. The level of capacity has to be reasonably high. My own view is that starting this way is the sensible thing to do. That does not mean there could not be arguments for some additional points, but I cannot immediately—again, as a jobbing doctor—see ones where I think, “This is going to make a big difference.” The fact is that this is founded on a very established bit of well-used and well-recognised legislation.

• 28 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Third sitting) · Hansard source

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  Does anybody else want to comment? Dr Cox? Dr Cox: I am happy to. Of course we do not want people to have to make that choice. I will refer to everything I have said before: are they are making a real choice, and have they had access to really excellent palliative care? I also make a brief point about the impact of the discussion around what dying looks like that the Bill has raised, and the fact that the stories that have been told have suggested to many members of the public that death is inevitably ugly, horrific and dramatic. Actually, that has made many people fearful, and they have been emailing me and saying, “I am now afraid of dying, and I wasn’t before.” They may then choose assisted dying before they need to because they have had a fear instilled in them that death is inevitably horrible and dramatic.