Kim Leadbeater MP: speeches

Speeches

• 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.

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

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  Can I ask a quick follow-up, Chair?

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

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  Q I have a very quick one. You talked about inequality in healthcare and in systems. What I would like to come back to is the status quo. What are your comments on the inequality that exists currently, where assisted dying is available to people who have got the money to go to Switzerland, or another jurisdiction, and have an assisted death? I ask Dr Ahmedzai, first of all. Dr Ahmedzai: Clearly, British people have had that option for many years, since Switzerland first offered that. It is clear that two things happen. One is that it selects people who are better off and more functionally capable—they can do it—so it discriminates against disabled people. Also, people tend to do it long before they need to, when they are still fit. That is because mostly, they want to go on their own, without dragging relatives along. It is doubly damaging to families who are going through an illness with somebody who is dying. They have to say goodbye to them long before they need to. However, that is because we do not offer that option here.

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

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  Q That is incredibly helpful—thank you. Dr Kaan, do you want to add anything to that, and maybe touch on the training that takes place around identifying these things and the conversations that take place? Dr Kaan: I echo exactly what Dr Spielvogel has said. As part of our medical training, we are trained to assess capacity in both small and big ways, depending on the size of the decision at hand, as he said. Throughout our medical training, we are trained to do that and to assess with a patient progressively over time, as we are seeing them in subsequent visits as well. This is really no different from that, although obviously the stakes are a bit higher than a blood pressure medication discussion. We look at whether, for instance, the patient is able to voice a reason for making their decision. Do they have a logic behind it? Do they have a set of values that they can express? Is their decision consistent over time? We are looking at a longitudinal assessment, rather than just one fixed moment in time. Over the course of our assessments, it really does become clear in almost all cases that somebody either does or does not have the capacity to make this decision or any decision. This is really not outside the realm of what physicians are trained to do in any other case of medical decisions, especially large ones. In the case of coercion, I agree that virtually all the time it is the opposite way: family members and loved ones are well-intentionedly trying to coerce or convince someone not to make this choice or not to proceed with this option, which they may have available, rather than pushing them to do it. I think the way to properly assess that is to ask open-ended questions: as Dr Spielvogel has said, to have them in the room alone, at least for a portion of the assessment, so you can have a one-on-one conversation; to ask the questions in various ways, so you are seeing the consistency of answers over time; and to look for non-verbal cues that may indicate that something else is going on. I have also never come across a case where I felt that a patient was being coerced into this decision by a family member, but rather the opposite.

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

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  These amendments allow additional witnesses to be called to give oral evidence, including representatives from Disability Rights UK, the Royal College of General Practitioners, the Royal College of Psychiatrists, and an expert in Welsh devolution and constitutional matters. As the sessions today have shown, hearing from expert witnesses is an extremely important part of this process, so I hope I have the support of the Committee in making these additions. On the motion to call additional witnesses tabled by my hon. Friend the Member for Bradford West, I respect the suggestion but I am confident that we have an eminently qualified witness to cover issues of coercion and domestic abuse in Professor Jane Monckton-Smith, who was suggested by my hon. Friend. We have also heard today—and will hear from many witnesses over the next few days—from medical doctors, social workers, nurses, palliative care experts and geriatricians. That is around 50 witnesses in total. While I fully appreciate that a wide range of additional charities and organisations has valuable contributions to make, I would encourage them to submit written evidence so that the Committee has the benefit of their thoughts. Regarding the start of the line-by-line scrutiny of the Bill, given the huge volume of evidence—both oral and written—that we have received and are still receiving, I have consulted with colleagues across the Committee and there is a consensus that having next week to absorb and evaluate the evidence, and to prepare any amendments in light of it, is extremely important. Consequently, we would begin line-by-line scrutiny on Tuesday 11 February, as per the amendment. I hope that these amendments demonstrate the robust approach that the Committee and I are taking to our work, and I encourage colleagues to support them.

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

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  I beg to move amendment (a), in the list of witnesses set out in the table in the sittings resolution agreed by the Committee on 21 January 2025, after Mencap (Thursday 30 January, until no later than 5.00 pm), leave out “Representative of Senedd Cymru” and insert— “Professor Emyr Lewis (Emeritus Professor, Department of Law and Criminology, University of Aberystwyth), Royal College of General Practitioners, Royal College of Psychiatrists.”

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

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  Q Goodness me, there is a lot to cover. To go back to your point, Mr Sanderson, it is important to acknowledge the fantastic work that palliative care professionals do. Indeed, it is extremely important that we are having these conversations, which is why we gave extra time to this panel of witnesses. Dr Cox, on your point about the pressure on the individual doctors involved in the process, the Bill is very clear that if they do not have the relevant specialism, they must refer to a specialist in that condition, and they “can” refer to a psychiatrist. There is probably consensus that we maybe need to strengthen the Bill in that regard. When there are doubts around capacity, doctors probably “must” refer to a psychiatrist. That is something I am taking away from these sessions. I was interested in the comments about the multidisciplinary approach. We heard about that this morning from colleagues in social work and in nursing. I would love to know your thoughts, Dr Ahmedzai, about the idea of a multidisciplinary approach. I think there is a lot of value in that. Dr Clarke, on this concept around training, it worries me that we have seen this afternoon a very different picture painted by you and others compared with what we heard this morning, when we had doctors and nurses telling us that they regularly assess for capacity and coercion. They said it is part of their day-to-day work and they were very confident in their ability to do that. Training is fundamental, and this is an opportunity to look at gold-standard training. I would be interested to know your thoughts on that. Dr Ahmedzai: You asked me about the multidisciplinary nature of this. I am really glad you raised that, because we seem to be focusing on palliative care as being very professional, and I would remind people that there are levels of palliative care. A lot of palliative care is given not by specialists like the three of us here but by generalists—either GPs, as we have heard, or by oncologists or geriatricians. When we talk about increasing palliative care and improving palliative care, it is not just about more doctors like us working at a specialist level. The other thing is that it is not just doctors. We have to acknowledge that nurses are on the frontline; they do so much more than doctors. When doctors clock off at 5 o’clock in those sad institutions that still do not provide 24/7 cover, there are nurses at the bedside all around the clock. Then, there are social workers, physiotherapists and others. If we are talking about meeting the needs of people who may not necessarily have pain but have other forms of suffering or worries, which are not even physical—the loss of dignity and the loss of independence—nurses are so good at supporting people in that. A doctor will just get in the way. What we need to do is make sure that we are addressing the reasons why many people choose this. I know, from speaking to people abroad, that it is loss of dignity and loss of independence. Is that not a legitimate reason for wishing that you were not a burden on somebody, or on the state even? It is really important that we consider that. The other thing to bring in as well, if we are thinking about the big picture, is another elephant in the room: palliative care is not strictly speaking actually in the NHS—not all of it. A lot of it is outside of the NHS, for historical reasons from 50 or 60 years ago when decisions were made. Although there are excellent charities providing discrete areas of it, we rely so much on non-NHS services. You would never think of going to a charity to get your heart transplant or your kidney dialysis. We need to confront the fact that palliative care is fractured because of that history and the genesis of how palliative care came to be. It is not just NHS. We must think about the multidisciplinarity. Dr Clarke: Regarding training and how much it is required, I would not be the first person to make the observation that sometimes doctors can be very pleased with their own abilities at a particular practice, and that practice might be having a conversation where you are assessing someone’s capacity. What is interesting as a palliative care specialist is that I and my team will be asked to get involved with patients in every possible bit of the hospital—surgical wards, medical wards, intensive care, emergency departments—so you actually see a huge number of patients being treated by many different teams and many different doctors, junior and senior, all of whom are having these difficult, nuanced conversations around the end of life with varying degrees of skill. Of course some doctors and nurses are superbly skilled at having them, and I would say that there are many who are not. The reason training is so important is that it is a little bit like Donald Rumsfeld’s unknown unknowns. You might not even be aware of the fact that you have caused a patient or their family distress. In a conversation where fear is a dominant part—the patient is fearful of suffering misery and loss of dignity at the end of life, but they may not voice that—you as the doctor can be completely oblivious of the fact that you have sort of stamped over those unvoiced fears with your hobnail boots. You are not aware of it. This idea that a vulnerable patient needs to be absolutely at the centre of any conversation you are having is quite radical in some parts of the NHS. It needs to be taught much more assertively from day one of medical school, so that vulnerable patients are always at the centre of the room. That is why I think the single most important thing for the Bill and its safety comes down to training and actually recognising that these conversations are difficult and nuanced. If we assume that, we are going to make sure that the Bill is as safe as it can be.

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

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  Q I will try to be brief. I thank the witnesses for joining us from wherever they are in the world—it is great to have you with us today. I will get straight to the point. There is understandably a significant amount of nervousness about the potential change that the Bill would create within England and Wales. Could you talk to us a little bit about what the process has been like in your jurisdictions and what it looks like now? What are your experiences, particularly focusing on questions around mental capacity and coercion? Dr Spielvogel can go first. Dr Spielvogel: Thank you all for having me today. I am Ryan Spielvogel and I am senior medical director for assisted dying services for Sutter Health in California. I have been an assisted dying physician for the past eight and a half years, since the law went into effect here, so I have seen many terminally ill people going through the process. You asked specifically about coercion and capacity. Determining mental capacity is something that we use physicians to do every day. There are codified steps and processes for us to be able to assess a person’s capacity. Capacity for anything, for any procedure or medical intervention, is presumed—that the patient has capacity—until they are deemed to not have capacity. We do that through asking questions, determining their understanding of their disease process, asking them to repeat what their understanding of their options is, and making a decision and then telling us their judgment as to why they came to that decision. That is something that we do every day. It is oftentimes informal. For instance, if I am prescribing someone blood pressure medication, I might not go through the entire process of assessing capacity, but in longer or higher-stakes conversations like end-of-life discussions, I usually do ask somebody to repeat back to me what they understand of their disease process, their options, what their decisions are and why they are making those decisions. That is basically exactly what I do in these conversations. In terms of coercion, I understand the concern. It is a very valid concern that people have. I have seen this in many jurisdictions in the US, where different states are considering legalising assisted dying, but I will tell you that in practice it just does not happen. I have seen assisted dying laws go into practice across numerous states and have helped many, many people through this process, and I have never seen a case where I even suspected coercion. People are just not that good as actors. So we get the family out of the room. We dig deep into their concerns, their justifications and the reasoning behind their choices. It is often crystal clear, when you are speaking to someone who is suffering from a terminal illness. They are very focused on their symptoms, very focused on their quality of life, very focused on their suffering. I do not ever get the sense from them that their family, their doctors or anybody is coercing them into the decision. In fact, if anything, I have seen it many times the other way around. I tend to see it where the patient is really ready to let go, but the family is really not ready to let go, and the family puts up varying degrees of roadblock to the patient accessing assisted dying. I have seen many cases of people being coerced out of it; I have never seen someone being coerced into it.

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

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  But those deaths do exist.

• 22 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Money) · Hansard source

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  I respect the right hon. Gentleman’s question, but I would say that point is slightly out of the scope of the money resolution. However, I think it is a fair point, and I acknowledge that a lot of work is being done, as the Government said it would be, to look at the workability and operability of the Bill. I am working closely with Departments on those issues, and those conversations will continue, alongside the work of the Committee. I hope that provides him with some reassurance. The other point is that I have never sought to stifle debate on the Bill or this really important issue; quite the contrary. I value it and I welcome it, but I do ask that it continues to be conducted in the same respectful and considered manner as on Second Reading. Where we disagree, let us do so with respect and without questioning each other’s motives or integrity.

• 22 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Money) · Hansard source

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  On 29 November last year, in a debate widely described as showing Parliament at its best, this House sent the Terminally Ill Adults (End of Life) Bill into Committee for scrutiny by a majority of 55. It was the clear will of this place that the Bill should be allowed to proceed, in the knowledge that Members will have further opportunities on Report and beyond to decide whether it should be enacted. For that process to continue, the resolution before us today must pass. Those who oppose the Bill on principle—something they are absolutely entitled to do—are seeking to suggest that there is something extraordinary or improper about this process, and on that they are simply wrong. This is a standard procedure that comes before this House all the time. Without it, there can be no Bill—that, I humbly suggest, is sadly what some people intend. This is not a blank cheque, as some Members have suggested. The right time to discuss the detail of what expenditure may be required is when we know the final shape of the Bill. At that point, if Members are concerned about the expenditure required, or indeed anything else, they can of course vote as they wish.

• 22 Jan 2025 · Terminally Ill Adults (End of Life) Bill (Money) · Hansard source

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  I absolutely agree with my hon. Friend. Having done such a powerful job of debating this issue on Second Reading, it is crucial that we continue that debate in the right manner, as Parliament voted to do. It would be wrong for anything that happens today to put a stop to that debate and those discussions. Let us not forget that the public are watching our deliberations carefully and that the issue we are discussing means a huge amount to many people. It is extremely serious and, for many, hugely emotive. We owe it to our constituents to treat it with the seriousness it deserves. I ask Members to consider carefully what it would say about us as a Parliament if such an important debate were to be curtailed as a result of procedural manoeuvring, which, sadly, is what I worry is being attempted by some colleagues today. The money resolution is not about the pros and cons or the detail of the Bill; it will simply allow for proper scrutiny—including of any cost involved—to continue, and mean that the Bill Committee can begin its important work. I urge Members to support the resolution.