Kim Leadbeater MP: speeches

Speeches

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

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  Q I will stay in the same territory, if I can. The Bill includes, very clearly, an opt-in model for doctors. I took that from the BMA, which was very clear on that, and I think it is very important. My slight concern, on which I would like you to expand, is about the removal of assisted dying from the holistic approach to end-of-life care and conversations that GPs have all the time—as do other healthcare professionals, including nurses, as we have heard this week. Where this works well in other jurisdictions is where it is integrated and where we talk about palliative care, we talk about decision making and we talk about choices. I would appreciate your thoughts on that concern. On capacity, just to reflect on the previous panel, my view is that psychiatric assessment would not be necessary in every case. We have heard from three families this afternoon; we can probably all agree that there was a clear wish from those individuals that this was the choice they wanted to make. I agree with the colleague who said that there will be a percentage of people; that is why I think referral to a psychiatrist is important in those cases. Have you any more thoughts on that, Dr Mulholland? Dr Mulholland: As GPs, yes, holistic care is what we do—whole-person, biopsychosocial care. If we got into an end-of-life discussion with a patient and they expressed a wish to go through a route of assisted dying, should that be legal, that might still be part of a discussion that we would have with them. It is the active part of the process. The BMA referred to the word “refer”—referring to a colleague, for those who did not want to do it. We agree that signposting is a better process. We would not want to be out of the patient’s life. It is very difficult to be out of a patient’s life, but it may be that we are not part of that particular aspect of their care. It is the same when we refer to surgeons and hospitals; they have an episode of care elsewhere. This would be another episode that someone might be undertaking for that person. We will still have the families that we are part of; we will still be caring for them as well. We do not see them leaving general practice or general practitioners, but the assisted dying part of their health journey, or death journey, would perhaps be outside some people’s experience or expertise. You would need experts and people trained in it to be doing it, and not necessarily every GP. Dr Price: No matter what somebody’s reason is for entering the process or what the outcome is, we are very clear that anybody should be able to access really good evidence-based care so that this should not in any way derail, deflect or make people not think about really good care. People should get really thorough assessments, have the right professionals involved in their care and have treatment where they need it and would benefit from it. All the quality that we have and all the guidelines that we work to should still be adhered to. We should still be providing all of the other good-quality care that we can. It is important not to bypass that and not to take shortcuts because they have made that decision.

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

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  Q I think you have answered it, but it was whether there was any specific detail about the Human Tissue Authority, how it operates and what that looks like. Dr Price: I do not have lots of individual experience with that group, because I do not work within a specific service. But it is an example of a model that is in operation, and hopefully I have described the sorts of characteristics and why they are there.

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

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  Q I take that on board fully, so thank you for those helpful comments. In terms of capacity assessment, point 12 in the feedback and the written evidence from the Royal College of Psychiatrists mentions having multiple opportunities to assess capacity. To provide reassurance on that, those are in the Bill—I think there are four or five opportunities to assess capacity. My question relates to point 15 in your written evidence, around the Human Tissue Authority. This is a model I looked at in terms of the decision making on coercion and capacity around people involved in organ donation. Can you tell me a little about that, and whether you think that there are parallels? It is a very serious decision, so we are in that territory. This is about what that looks like and what the role of psychiatrists is. We have talked a little about this already, but if we were to take this multidisciplinary approach, which I think is really powerful, what should the role of psychiatrists be? Dr Price: On the role of an oversight group, one of the risks with individual practitioners doing these sorts of assessments is that they may do it once or twice in their career. What we know is likely to happen is that a smaller number of practitioners will do lots of assessments and build up individual expertise. However, it might be that a particular practitioner does this only for a patient who they know, or only a few times. Therefore, in terms of building up through repetition the sort of expertise that somebody such as me might have in the mental healthcare of an older person—thousands of patients over a couple of decades—an external group that understands the standards and the process should be able to scrutinise things at the time. There are a number of bodies that do that not just for organ donation, but across lots of different services. We have them for liaison psychiatry, and they might have them for electroconvulsive therapy services, for example. They are not extraordinary or unusual, but they ensure that there is some consistency and reliability and that the assessments are of a standard. Scrutinising assessments after somebody has completed the process is useful for everybody who comes afterwards; it may not ensure that the quality was there for that individual. That would be the rationale for that sort of approach. Forgive me, but would you ask me the second part of your question again?

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

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  Q This has been an incredibly helpful panel, so thank you for all your expertise. Let me come back to the content of the Bill, and to some of your points, Professor Owen. In terms of capacity and coercion, I think we are absolutely having these really important conversations. What concerns me a little bit, though, is whether we are saying we are not confident that two doctors, potentially a psychiatrist and an oncologist, and a judge can make assessments of capacity and coercion between them. What does that mean for things that are happening at the moment? We have talked about the withdrawal of end of life treatment and those things; those assessments must be being done now, all the time, but at the moment there is no legal framework around that. Surely, putting a legal framework around that and having all those multidisciplinary people involved has got to be a positive thing. Professor Hoyano, I would appreciate your thoughts on that. Professor Hoyano: As I say, whereas I completely respect Professor Owen’s expertise in this as a psychiatrist, for me as a lawyer the question of capacity is a yes or no, necessarily. But capacity is always determined by the Court of Protection in respect of the decision that must be made by the person concerned: do they have the capacity to do it? When we are talking about a determination of capacity, and also about coercion—which of course is part of capacity in a sense, because capacity is the autonomy of decision making—you are going to be having a very focused inquiry. It is not an inquiry into whether a person has capacity to manage their financial affairs. I probably do not have that capacity, but on something like this I would have capacity. It is important to recognise that it is a yes or no question, which the law has to draw and does draw, depending on the expertise of psychiatrists like Professor Owen, but also forming its own judgment from its own experience, which is why I think the Court of Protection really is the place where this should be. There is one aspect of the Bill that worries me a lot, and that is the number of people who will be excluded by the provision that the medication must be self-administered. This would mean that Tony Nicklinson, who went all the way to the House of Lords to try to get the right to die, could not have it under this Bill, because he was paralysed. He was a tetraplegic, basically—he was paralysed from the neck down, with limited movement of his head, from a stroke. He lived for seven years with that condition and he would not have been able to self-administer. In fact, when he was denied by the House of Lords—anyone who has seen the Channel 4 programme will have watched him wail in despair—he refused all nutrition and hydration from that point until he died. That was the death he did not want, and I think we need to recognise that there are problems like that. In 2023 in Canada, across the entire country, only five patients opted to self-administer the medication—only five. Even when patients were capable of doing it, they wanted the doctor to do it instead, so let us remember that as well, please. Dr Ward: Can I make a quick point about self-administration? This is something that in Scotland we looked into in great detail. In Scotland, we chose self-administration specifically because it does not just include ingestion or swallowing. There is a range of ways in which you can self-administer the medication, and I am happy to provide that information to the Committee if that would be helpful.

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

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  Q Thank you to the three of you for coming here this afternoon and telling your stories. I know how hard it is to tell your story over and over again. I think it is important to reflect on the fact that we have had a lot of talk this week about amendments, clauses and various other technical details, but this is the reality of the subject. Thank you so much for sharing your stories. Liz and Julie, I am interested to know whether you think any aspects of the processes that you went through in Australia and in Spain could have been done better or improved. Is there anything from your experiences that we could learn from to enhance what we are trying to do here? I also have a question for all three of you—and Pat, goodness me, to come here and tell your story after everything you have been through is unbelievably brave, so thank you. What impact did these different types of death have on your grief and on bereavement? We are talking about different types of death, so I think it will be helpful to think what that looks like for people. Julie Thienpont: It is a very good question, because I think it did impact my grief. There is not anything that I would change, for definite, about that, but I think I mentioned that I had not tried to talk Guy out of it the first time around, but I did say, “Don’t be so hasty, because you’re not as sick as you could be.” He was still getting up and dressed every day and managing pain, so we had that discussion. On the only day that I ever knew him to stay in bed a little bit longer, I knew he was thinking about phoning to say that he was ready, and he called me to him and said, “Come and sit with me. I want to ask you two things.” The main one relevant to this is: “Don’t try and talk me out of it this time. I’ve made the decision. Don’t try and talk me out of it, because I don’t want you to be impacted in that way.” The second one was to “be strong”. Both those things have impacted my grief, because I was so strong for 12 whole months and I just thought, “Yes, we’ve gone through that. It’s been great, and”—not “great”. Sorry, I am using the wrong terminology, but for me, it was so good to know that he died so peacefully and he was at peace with himself. That happened and I thought, “Right, now I’ve got to do the ‘be strong’ bit,” so I did that. I did want to talk him out of it again, but I did not, and I was very strong, and then all of a sudden, one day, grief did start to creep in, obviously. Suddenly I thought, “Hang on, he’s not coming back.” That is a normal grieving process, but it held off a little while. The pathway that the grief I experienced took was that every day I had a different memory of us sitting somewhere, being somewhere or doing something. During the last months that we had together, knowing that he was going to die—sorry to sound like a bit of a romantic—our love intensified so much. You know that everything you do, it is probably going to be the last time you do it. It is almost like an unbreakable bond between you: you are both in this situation together and you are going to get through it, you are going to be strong, and you are going to be there for each other. I think that carried me so far, because those four months that he lived were the best four months, in the sense of our closeness and how supportive and caring we were for each other. It makes me smile now. When I think of his passing, I smile. Yes, I do get upset and I miss him a big lot, but I smile because everything worked out the way he wanted it to.

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

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  That is really helpful. Dr Richards: I do not think there is any evidence that there is a loss of trust in doctors post legalisation—I just wanted to add that. As I said in response to the earlier question, this is a categorically new thing that would be coming into society, which would cause cultural change in how we approach, think about and anticipate dying. It is a big deal—I know you all know that. Accompanying it, therefore, there needs to be really sensitive information delivery that is appropriate across society and that will alert people to this. In particular, if you are going to have a system where doctors are not allowed to raise it with patients, people need to know about it. That is one thing. Reducing people’s fears is also important. I mean, there are so many misconceptions about assisted dying, even among people who have spent quite a lot of time reading about it and researching it. It is a very simple thing, but the discourse in society has been going on for so long that there is a lot of misunderstanding.

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

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  Q For clarity, Dr Ward, you are right that clause 34 requests that the chief medical officer submits an annual report. You clearly have many years of experience in this subject. For you, what does best practice look like when it comes to assisted dying, end of life choice and end of life care? That is what we are all aiming for in our deliberations. How do we keep it patient-centred? I notice that you have also spoken a lot about misinformation; how do we tackle that? How do we make sure we are dealing with facts rather than speculation? In particular, how do we provide reassurance to marginalised communities and people with disabilities, who are understandably nervous about this change in the law? When it comes to safeguards and protections, what does best practice look like? Dr Ward: To take your last point first, we must involve them in the process and have an open dialogue with them. That means not just in the consultation process, when you are considering passing legislation, but when you have your implementation taskforce, on which you must make sure you have representation from across all the stakeholders involved, including people with disabilities and people with terminal illnesses. I would point to the fact that best practice is about balancing the autonomy, dignity and compassion that the Bill aims to achieve by giving people the option of assisted dying, while also protecting vulnerable people who feel that there are worries and concerns. However, having worked in this area for 13 years and seen people who would really benefit from having this option, and living now in a jurisdiction that has it, I would point out that some of the most vulnerable people I have seen are the terminally ill who want and need this choice. It is about taking a holistic and evidenced-based approach. You as a Committee will hear from the great and the good across the board, and I am pleased that the Committee is taking account of lived experience, because that is very important to inform the decision-making process. It is about making sure that we are going to the source of evidence and using peer-reviewed data and Government data. Again, as I said earlier, you really need to trust your international colleagues who have gone before you on this. We need to consider what the Bill does versus inaccurate perceptions of or speculations on what it might do. The task here is to consider what is in front of you, not what might happen down the road.

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

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  Q Can you give an example? What do you mean by that? Dr Richards: Misunderstandings of what it is? Fundamentally, that it is not based on the principle of autonomy and that it is something that can be done to you, without your consent. You would not want the general public to think that. At a very basic level, it is understanding that assisted dying—the very phenomenon that that term encapsulates—is a phenomenon that starts with the patient. It is a request made by the patient because of their subjective assessment of their quality of life as they are dying. At a very fundamental level, you would want to communicate that to the public. It is a huge piece of work to have to create an informational context that is variegated according to the starting position of people’s knowledge base around it, and to bring in something that does not scare the public and so they see it as something that can be positive. In jurisdictions that have legalised, even post-legalisation there continue to be elements that resist it. However, you start to see positive stories of the kind of ceremonial aspects that can come when you can time death. There is a whole cultural piece around new rites—new rites around dying that are being created when people choose to have an assisted death, and the new dying time or space that is opened up there, as well as the intentional actions that can happen from people’s social groups. Post-legalisation, it is not just fear—I think you get a balance of stories coming through—but it is something that you need to attend to.

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

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  Q I have a very quick question. Professor Preston, you talked about nurses. Again, feeding into this multidisciplinary approach, one thing I am really clear about is that we must have the best training in the world around those end-of-life conversations and end-of-life choice. Do you have any thoughts about what that training could look like or what the important components of that would be? I am interested to know. Professor Preston: We have heard lots of evidence about training schemes around the world. To be honest, I think they are still developing, but we can look at the good elements of those and at what has and has not been evaluated. We can do it almost like action research, where you are learning as you go, and we can improve the training as we go. Most people do not die under palliative care. This Bill will affect general care; it will affect specialist care, but not in palliative care. We need to train those people as well, because they will be having a lot of these conversations. We are doing that training now, which is about how we talk to someone in a compassionate way. How do you help people to understand that they can be involved in the decision making? What might the goals of care for you be, and what might a goals-of-care conversation look like? We have lots of this training already. Palliative care has huge expertise in this with advanced care planning and the rest of it, so it is about getting some of that incorporated. It is not just about saying, “This is what an assisted death would look like. This is how it would process.” It must be more than that, and we need to help people to explore their end-of-life choices. How do you want to die? Do you want to die at home? Do you want the cat on the bed? It is about all those things that are really important to people, but we must have that conversation and explore them, and it is quite hard to get clinicians to have those conversations. There will be a special group of people who can manage this; they will need training and support.

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

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  Thank you so much. Pat Malone: My experience with my father was entirely different. My daughter, who was seven at the time, reminded me recently, when I was putting my thoughts together for this, that in his last weeks she had visited him, and I had taken her into a side room and told her not to expect to see the grandpa that she knew, because he was very, very ill and he did not look anything like she would expect. She said she was very thankful that I did that, because she was stunned and shocked when she saw him. He was like a 1,000-year-old corpse, he was moving, and his eyes were yellow, and that is how she remembers him—she does not remember any of the good times. My sister, who lived close by, was with him most of the time, and she just sat by his bed and prayed for his heart to stop. We were all shell-shocked when he did finally die. As I say, that informed the decisions that were made about suicide by my sister and brother. Had he been a farm animal, we would have been prosecuted for causing unnecessary suffering, but he was a man so he was not entitled to that sort of consideration. I remember him in that horrible ward breathing his last. The only time he moved in the last days was to cough up blood. For a man who had asked to be relieved of that burden, who had asked for an act of mercy, a week before, and it had been denied him—I cannot understand how anybody would deny a dying man a deliverance. When my brother died, he and my sister-in-law had been together since they were 11 years old. He was only 53, so they had already known each other for 40 years. She had shared his suffering while he was being driven around the country looking for diagnoses and, ultimately, looking for doctors who would help him commit suicide. His weight had gone from 18 stone to 8 stone, and he was bright yellow as well. He was suffering all the time and she was suffering with him. She was relieved as well as grieving when he actually died—and then the police were at the door. The investigation went on until his inquest eight months later. The police were as helpful and sensitive as they could possibly be. Vicky got the impression that they wanted her to give the wrong answer—when they said, “Did you know what he was going to do?” she said, “Yes, I did”; to “Could you have stopped him?” she said, “Yes, he was weak as a kitten”; and to “Could you have resuscitated him?” she said “Yes,” because she had had some nursing training, and so on—and with every answer they just collapsed a little bit more. Ultimately, at the inquest there was an anomaly in his suicide note. It was written in two different colours of ink, and the police investigated whether it could have been written at different times, possibly by different people. Giving evidence at his inquest, the police said that they thought his pen had run out—there was a squiggle at the top where it changed from black to blue—and they said that they were not proceeding with any idea that there had been positive involvement in his suicide. I have a note of the transcript of what the coroner said, which reads: “I don’t want to make any more of this than I absolutely have to. I simply record therefore that Michael Malone took his own life. He did so quite deliberately and having made appropriate preparations, and so it’s not a case of my saying that he did so while the balance of his mind was disturbed, because it clearly was not. It was a decision that he took and I have every sympathy with that decision in so far as a coroner is allowed to say that.” The police were very sympathetic. The coroner was very sympathetic. Danny Kruger is very sympathetic. But sympathy only goes so far, and I am glad that this Committee is now looking at exactly the people who matter first in this issue, who cannot be here to talk for themselves. Liz Reed: In answer to the first point, about anything we would change or do differently, I think actually my brother’s case was dealt with really well and there were checks and balances along the whole way: “Does he meet the eligibility criteria?”—obviously—“but also, does he want to?” His wife was involved in the process with him, and he was checked constantly. A doctor administered for him, and he had met him already. He knew him and had a rapport with him. He had a few jokes with him at the end. So from that perspective, I do not think so. It is slightly different in Australia, in that it does not have to have a High Court judge, so the process feels a bit more streamlined than it is here, and maybe the access would be slightly different because of that. In terms of the grief, I think anyone that knows someone who has been through a terminal illness knows that there is a level of anticipatory grief that comes with that—the waking up every morning thinking, “Has it been tonight? What happens next? What’s today?” Because when someone is in the final stages of their life, which my brother was, there is always something every day: “Oh, he’s got to have fluid drained from his heart today,” or, “Oh, this has happened.” There is always something, so that grief starts coming on before the person has even died. The day my brother died we sat outside in the courtyard and had a glass of champagne. He chose a Bob Dylan song that he wanted to die to. It was extremely peaceful. It was seconds. And he got to say all the things, have all the conversations, speak to our parents—that sort of real American “closure”. That is what he got, and we were not sitting around thinking, “I wish I’d said this. I missed it,” or, “I was off doing something with the kids.” We were all there: my mum, my dad, me, his wife. We sat there and held his hand—and what a gift.

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

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  Q We have heard a lot from witnesses this week about safeguarding. That is something I am keen to pursue. The Bill has a significant number of safeguards already, but is there anything else that you think we could add? I think all on the Bill Committee are interested in hearing such ideas. In particular, we are thinking about how we can protect people, such as people from disadvantaged backgrounds, older people—Dr Richards, I think you have experience of working with older people—people from a range of different backgrounds, and people with disabilities, so that we keep the Bill very much focused on the people it is designed to help, who are terminally ill people with less than six months to live, while addressing more of the broader concerns about some of the inequalities in society. Professor Preston: In covid, we did research in care homes, and there was real concern about “do not resuscitate” orders and emergency care plans that were blanketed across the care homes. Care home staff were traumatised by that, so there are real issues. We know that there are real issues day to day in how people are treated within the NHS. I think it is unconscious—I do not think people are intending it—but we know that people are treated differently and that different things are done. That is partly why we think a system outside that would protect them, because then you are not within the healthcare team that is treating you and giving you advice about such things, whereas if you are having to opt into a system where you have to do something more, they will not feel like it. That does not happen in the hospital. It is about trust. One of the issues in Switzerland—I must just add, the same Swiss system is being adopted in Germany and Austria, which already has a panel—is that they are trying to protect these people by keeping it one step removed, so that people do not feel that they are trying to be persuaded to an assisted death. Most hospitals in Switzerland will not allow assisted dying to occur, because they do not want a lack of trust in their patient group. Instead, they will sometimes allow the right-to-die associations in to do this and there are just a few hospitals that allow their staff to do it. It is all about trust.

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

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  Q I wonder if you have been on your own journeys around your personal views on assisted dying and choice at the end of life. I have spoken to lots and lots of people about this, and anybody who has had experiences similar to yours are very clear that the law needs to change. People who have not been as close to this issue as you have often hold a different view. 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.

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

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  Q Thank you to the witnesses for joining us this morning. I would like to address my comments to Alex Greenwich, if I may, but also come back to Dr Furst and Professor Blake. It is really valuable for us as a Committee to hear your reflections on the experience of the process of passing this legislation. How did you manage to keep that process patient-centred but also take into account the concerns around the broader societal issues, particularly when it comes to equality and human rights—those really important issues? What was that process like, and what are your reflections on it? Also, Dr Furst and Professor Blake, one thing that I feel really strongly about is having really good training around assisted dying, and end-of-life care and choice. Would you like to make any comments on what that looks like? Alex Greenwich: Thank you very much for that question. I will take you through a little bit of the journey to voluntary assisted dying in New South Wales, what encouraged action, and then the safeguards that we put in place. The New South Wales coroner had reported to us that there were a number of really horrible suicides of people with terminal illnesses who felt they had no option—that those were cruel and lonely suicides. That was backed up by paramedics and police who would arrive on site. Myself and my parliamentary colleagues decided, “We can do better, and we can regulate in this space.” Voluntary assisted dying in New South Wales is an important form of suicide prevention. What voluntary assisted dying does, in the model that we legislated, is ensure that a person who has a terminal illness and knows that it is going to be a cruel and painful end of their life is instead directed to a doctor—a doctor who will be able to take them through all of their palliative care options, provide and link them with social supports, and give them the choice to have a death that is better than their illness would otherwise provide. It has been important to make sure that our legislation is limited to that cohort of people who are terminally ill and know they will have a cruel end of life. Our legislation is not about people with anorexia nervosa. It is not about people with a disability. It is not about people who are feeling a burden. It is about a very limited and narrow cohort of people who know that they are going to have a very cruel and painful end of their life, and want that control to know that they can have a death that is better than what their illness would otherwise provide. We have ensured that decision-making capacity needs to be enduring. We have ensured that a person cannot be under any form of coercion. We ensured that we had a really strong period of implementation, from the time the Bill was passed to 18 months later, when it came into effect, to make sure that our health system and the various doctors required training. In New South Wales, the experience of voluntary assisted dying is that it has been a form of suicide prevention, and that it has also been, as I explained earlier, very pro-palliative care. As I reflect on our parliamentary debate, it was also one of the first times that our Parliament had grappled with the concept of death. We were very honest about it, and we were very honest in having to admit that we are all going to die, that there are some people with some terminal illnesses who are going to die in a really cruel and painful way, and that we could provide them with an option of control, peace and respect. We believe, and our annual reports into our legislation indicate, that we have been able to provide that. I am happy to answer any further questions, but I will wrap up on that. Professor Blake: Given that the Western Australia legislation has been in force rather longer than the other jurisdictions that have been talked about today, we have had the opportunity to reflect upon it—I am speaking here as a lawyer; I assume that is why I have been invited to talk—and that has revealed some of the very good things about the working of the legislation, but also some of the challenges that have emerged. As Dr Furst has said, the legislation in all Australian jurisdictions varies slightly, but it follows a particular legislative model, and is highly prescriptive. It requires a number of requests and, in Western Australia, assessment by two different practitioners. In Western Australia, there is no judicial double-checking of that process. Although I note that that is contemplated within the UK law, that is not something that we have found to be necessary or even appropriate in Western Australia, and I think that would be the case in other Australian jurisdictions. One of the issues we have experienced is that there is a struggle to get people to take up the training, whether that be medical practitioners or nurse practitioners. One of the thoughts around that has been the very prescriptive nature of the model, which requires a lot of work on the part of the practitioners. It is worth bearing in mind when looking at your piece of legislation that the more prescriptive it is, the more work it requires on the part of practitioners, and that is a lot of work. We need those people to undergo the training in order that the process is done properly and all the safeguards that are included within the legislation—and they are extensive—are respected. That is something to bear in mind. We have prescriptive provisions around capacity and voluntariness and lack of coercion. I would add that we also have a requirement around residency. If we are looking at when the legislation has come before a tribunal or judicial body, the only circumstance—in Western Australia, at least—where it has come before the tribunal, which is the State Administrative Tribunal, has been where the practitioner has regarded the patient as not eligible on the grounds of not fulfilling the residency requirements. There has been no other ground on which a matter has been taken to a judicial body. You asked about the training. That is an essential requirement for practitioners who are involved in making assessments and in the whole process. It is intrinsic to the operation of the Act. The feedback I have heard is aligned with what Dr Furst has said—that no divisions have arisen within the practitioners here, and that those who have chosen to do the training are indeed very valued and very much appreciated by the people who have accessed the scheme. I will say two more things about the regulation. One is that in the report that has been handed down, the only negative feedback has been about delays. That has been identified as being due to a lack of education among health professionals. One of the recommendations of the report is that education really needs to increase so that people’s journey on VAD is not unnecessarily delayed and, perhaps, their wishes are not able to be granted. The second thing is on conscientious objectors: 13.7% of applications for VAD in Western Australia from 2023 to 2024 were declined on the basis of conscientious objection. But in Western Australia, unlike some other Australian jurisdictions, if a practitioner declines to become involved in the process, they are required by law to give the patient an information sheet outlining options around voluntary assisted dying. That is actually mandated in the legislation. I have probably said enough for now, so I will hand over to Chloe. Dr Furst: I completely agree with Meredith that the training is fundamental. For most jurisdictions, it probably takes a full day. It is often an in-person event followed by an exam, which you have to pass. In South Australia, we had a whole lot of mandatory questions that you actually had to pass to be eligible, to make sure that you were upholding the legislation. This is so different from anything else in medicine. In any other part of medicine that I practise, if I see a process that I think can be improved—if I see efficiencies that can be made or bits of the system that are not adding to patient care—I can choose to adapt the process as I see fit to give the patient the care that I want to give or that is compatible with what the patient wishes. That is so different from voluntary assisted dying, where, as Meredith said, it is so legislated, down to who can be a witness for various documents. As a doctor, the amount of documentation that is required for voluntary assisted dying is second to nothing. We just do not do that kind of documentation in any other areas of medicine. So it is quite different, and it really does require being quite precise around that documentation and making sure that you are meeting all the timeframes and guidelines. The training is hugely important in terms of the operational component. There is also the training around end of life and conversations, and how you support the patient and the families. That is a lot harder to teach. That is, I guess, why people will fall into this, and why a large number of palliative care doctors will do it—because it is already second nature to them or they already have the relationship with the patient and they see these conversations as something they are good at and good at facilitating. So there are two parts of that training that are really important, and then, as Meredith said, there is also the training we need to be giving to the rest of our workforce, and really all health practitioners. A patient might ask the social worker, the orderly or the dietician about assisted dying, and they have to know how they can respond and how they can connect that individual to the right practitioner. That is really important. We have done a lot of work in South Australia, as all the other jurisdictions have, around upskilling the whole workforce, because this is everyone’s role and job. I also wanted to speak briefly on what we in South Australia call the gag clause. In South Australia and Victoria, we are not allowed to bring up voluntary assisted dying with patients, and that is really, really problematic. From my perspective, it leads to poor provision of care. In medicine, when I am talking to a patient, in every other area, if they needed treatment, I would be obliged, and it would be good practice, to tell them about all the treatment options that are available to them. If someone had cancer, I would want to be telling them about good palliative care, potentially surgery, and radiotherapy and chemotherapy, yet voluntary assisted dying is the one thing we are not allowed to talk about and is taken off the menu. Some people may not know that voluntary assisted dying is available to them. They might be waiting for me as the doctor to bring it up to them. I have brought up every other option for them; why am I not able to talk about voluntary assisted dying? I just think it is really important that we do not stigmatise voluntary assisted dying and that we see it as a valid option for people. Professor Blake: To add to what Chloe said, in Western Australia practitioners can raise voluntary assisted dying as long as it is in association with other end-of-life choices, but the way the legislation is worded is confusing, so one of the recommendations in the most recent report is that that be removed altogether so that voluntary assisted dying is treated like any other treatment option. As Chloe indicated, the evidence was that treating voluntary assisted dying differently can compromise the whole end-of-life journey, because it interferes with discussion of other end-of-life options. The strong recommendation from the board is that it be removed altogether and that voluntary assisted dying be treated just like any other appropriate treatment option so that the patient has a true choice.

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  That is really helpful. Dr Mullock, do you want to add anything? Dr Mullock: I agree with most of the things that I am aware of that Professor Esmail just talked about. I would add that at the moment, people go sooner than they would wish to die because they have to go to Switzerland while they are still well enough to travel. They also have this terrible fear that their loved ones will be prosecuted by the police, which creates huge amounts of stress and is really unpleasant. I agree that having a system of prospective assessment of the person, rather than retrospective—when it is too late after they have died—will absolutely be a better and more compassionate approach, and provide better safeguards than we have at the moment.

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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.

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  Thank you.

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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.

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

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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.

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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.

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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.

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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.

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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.

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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—

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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.