Terminally Ill Adults (End of Life) Bill (Seventh sitting)

Kim Leadbeater Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Dr Opher]

It was clause 26, sorry.

Professor Hoyano: Under the Canadian system, the provinces each have a college of physicians and surgeons. However, what has happened is that everyone has worked collaboratively across all 12 jurisdictions, plus the federal Government. We now have the Canadian MAiD—medical assistance in dying—curriculum, which was developed by the Canadian Association of MAiD Assessors and Providers in consultation with experts from across the country. It is providing a comprehensive, bilingual, nationally accredited training programme that is evidence-based and is based on the learning that has happened in Canada since the legislation was first enacted.

There is also a model practice standard for MAiD and a companion document, “Advice to the Profession”, which all the medical colleges have signed up to. It helps practitioners to align their practice with the official guidance and assists health professional regulatory authorities to ensure that the public is protected. Coercion lies at the heart of these documents.

The regulations for the monitoring of medical assistance in dying require—and this is something else that I suggest be changed—that in Canada there has to be an annual report from the federal Government, which is very granular in detail, from right across the country. It happens at least once a year; there was one year in which we had two reports going into all the details. On coercion, we know that in 2023, when they examined the reasons for ineligibility, there were 41 cases across the country in which the physicians determined that the person had not made a voluntary request without external pressure, and it was therefore declined. We need to know is what is happening out there, and I do not think that a report every five years is going to help. We need to enlist all the medical professions involved in signing up to very detailed codes of practice, but we also need the training that Amanda has referred to as essential.

The last point that I would make is that McGill University is launching a national palliative care hub that is available to any practitioner in the country and from which they can receive guidance and support with helping and advising patients who are receiving palliative care. One of the options is, if the patient desires it, how to deal with these requests.

Dr Ward: Now that I have had a look at clause 26, may I answer the Member’s question? I think it is a very well drafted provision, and it is very similar to what we have in Scotland. In particular, I know we are concerned about people being coerced into assisted dying, but internationally it is actually the converse. Some jurisdictions are considering putting provisions in their Bill because family members are trying to put undue pressure on others not to make an assisted dying decision.

On my understanding of the reporting in Kim’s Bill, it is just not a five-year review: the Registrar General, the chief medical officer and the Secretary of State are involved. Again, I commend the Member in charge for the reporting procedures being very robust in the Bill.

[Kim Leadbeater (Spen Valley) (Lab)]

Q 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.

[Tom Gordon (Harrogate and Knaresborough) (LD)]

Q Dr Ward, I think the point about a holistic and evidence-based approach is critical. In the work that you did in the Scottish example you gave, how was the terminal illness definition arrived at? How are you capturing those people who are vulnerable and want to have an assisted death, but might end up limited in their scope and ability to access it?

Dr Ward: Look: assisted dying is the same as any other healthcare choice. It is always going to be limited. We are not going to reach everyone that we absolutely would want to. There are people who want to have this option and this choice who will not qualify under a terminal illness definition, but we have to draw the line somewhere. We looked at international evidence from Commonwealth countries that are very closely linked to Scotland and the UK. We drew the line with the definition that the person has an advanced progressive illness from which they are unable to recover and that will cause their premature death. For us, that demands the support of Members of Parliament in Scotland and the support of the public.

I really stress the fact that each jurisdiction has to legislate according to its own constitutional, societal, legal and cultural considerations, which is what we have done in Scotland. That is the definition that is working for us now. Previously, there were more liberal attempts that did not gain the support of the House. We believe that we have arrived at a situation that is very similar to the definition of terminal illness here in Westminster, and that is both safe and compassionate but also draws the line so that people who should not be able to access this do not.

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[Danny Kruger]

Q It is great to hear about the case for common law over the Human Rights Act. Yesterday we heard about parliamentary sovereignty. This is a tremendous process we are having here.

Professor Hoyano said that the person in the street would not see the difference between a patient requesting to die by the withdrawal of treatment versus the active administration of fatal drugs, whereas I think you said, Professor Owen, that you did see a profound difference between that decision on the part of the patient and also, presumably, the act on the part of the medical professional, in the case of either the withdrawal of treatment or the administration of fatal medication. You said that you would be happy to draw that out; could you do so?

Professor Owen: Yes. I am happy to try now, but also to do it further with some written submissions if that would be helpful, because it is such an important point. First, for the man on the street, or the person on the bus, one thing to remember—this comes out in the public opinion polling—is that when you ask about assisted dying, some people think that that is access to palliative care. There is a degree of misconceptions that are out there in the public that are important to bear in mind.

On the distinction between the decision around the refusal of life-sustaining treatment and the decision regarding assisted dying, what are the similarities? Well, they are both about life and death. What are the differences? One is a refusal; one is a request. One is traditionally considered to be about bodily integrity—it is the so-called shield of the person, or the patient, against the intervention on the body that is being made by the medical profession. You are giving the patient an important right, which is a shield-like right. That contrasts with a request for assisted dying, which is a request. You are involving other people in an act that is an act of ending one’s life. That is not something that the medical profession has been comfortable with, going back thousands of years.

So you can discern a number of differences. Could you reduce those differences to one thing and one thing only, and be particularly precise about it? Probably not. I think you are talking about differences that cluster and group, and which we overall accept as a difference of kind.

The other issue here that is important is intention. When you are assessing somebody’s decision to refuse a life-sustaining treatment, the doctor there does not have the intention to end a person’s life. That would be a concerning intention were it there—and sometimes it is looked for, actually, if it is disputed. But of course, when a doctor is involved with a process where somebody is seeking assistance in the ending of their life, it is quite difficult to say that the doctor does not have an intention to end life.

One could go on with a discussion of the differences, but the similarity is that we are talking about life and death.

[Kim Leadbeater]

Q 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.

[Lewis Atkinson]

Q Professor Owen, can I probe a little more something that you raised before—the interaction of potential impairment, potential family dynamics and so on in a way that is not malign, but that you think is a consideration? We have heard some evidence in the course of this week about whether there would be any benefit from a more multidisciplinary approach that could make a more rounded, psychosocial assessment of someone’s situation. That would be less about the clear test of whether there is capacity under the Mental Capacity Act and more about the wider considerations of those interactions. I just wonder whether the inclusion of, say, social workers or mental health professionals as part of a multidisciplinary approach would give you any reassurance on those points that you made.

Professor Owen: Good question. On the point about that interaction issue, it is not just me picking it up; it is the courts and the Court of Protection particularly. If you are interested, it is footnote (11) in the written submission from the Complex Life and Death Decisions group. The point that you make is well taken from my point of view. You have two doctors, essentially, doing the assessment. Some doctors can be very good at assessing social circumstances; some are not so good. I think it would be preferable to try to get a law that gets sight of social circumstances; one way of doing that may be to insert a requirement that a suitably experienced social worker is involved, so that there is some sensitivity to those contextual, relational, interpersonal effects, which, as I know you are aware, can be very subtle. A lot of these things are extremely difficult to pick up. They are easy to miss and, even when you are aware of them, there can be dilemmas about what to do with them.

Professor Hoyano: Might I add a postscript to that? A model that we could consider in this context is CAFCASS—the Children and Family Court Advisory and Support Service—in the family courts. It is a body of experts—civil servants, in effect—but they are independent and they are accustomed to dealing with specific context with social workers, for example. They investigate what should happen to a child in public law or private law proceedings. It occurs to me that something like that—a report from an equivalent body to the solicitor’s office, which I mentioned before—could be a very good way of building that in, because I completely agree that social workers are likely to be more professionally attuned, by virtue of their training and experience, to looking at the wider context.

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[Dr Opher]

Certainly.

[Kim Leadbeater]

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.

Dr Richards: In covid, we did research in care homes, and there was real concern about “do not resuscitate” orders and emergency care plans that were blanketed across the care homes. Care home staff were traumatised by that, so there are real issues. We know that there are real issues day to day in how people are treated within the NHS. I think it is unconscious—I do not think people are intending it—but we know that people are treated differently and that different things are done. That is partly why we think a system outside that would protect them, because then you are not within the healthcare team that is treating you and giving you advice about such things, whereas if you are having to opt into a system where you have to do something more, they will not feel like it. That does not happen in the hospital. It is about trust.

One of the issues in Switzerland—I must just add, the same Swiss system is being adopted in Germany and Austria, which already has a panel—is that they are trying to protect these people by keeping it one step removed, so that people do not feel that they are trying to be persuaded to an assisted death. Most hospitals in Switzerland will not allow assisted dying to occur, because they do not want a lack of trust in their patient group. Instead, they will sometimes allow the right-to-die associations in to do this and there are just a few hospitals that allow their staff to do it. It is all about trust.

[Kim Leadbeater]

That is really helpful.

Dr Richards: I do not think there is any evidence that there is a loss of trust in doctors post legalisation—I just wanted to add that.

As I said in response to the earlier question, this is a categorically new thing that would be coming into society, which would cause cultural change in how we approach, think about and anticipate dying. It is a big deal—I know you all know that. Accompanying it, therefore, there needs to be really sensitive information delivery that is appropriate across society and that will alert people to this. In particular, if you are going to have a system where doctors are not allowed to raise it with patients, people need to know about it. That is one thing.

Reducing people’s fears is also important. I mean, there are so many misconceptions about assisted dying, even among people who have spent quite a lot of time reading about it and researching it. It is a very simple thing, but the discourse in society has been going on for so long that there is a lot of misunderstanding.

[Kim Leadbeater]

Q 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.

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[The Chair]

Thank you.

[Kim Leadbeater]

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.

[The Chair]

I thank the witnesses on behalf of the Committee. We will suspend until 3 pm, which gives us six minutes.

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[Dr Opher]

And he was having excellent palliative care, so what was in his mind, do you think? Why did he decide on that option?

Liz Reed: He knew he was dying. He was diagnosed in October 2022. Just to be clear, in the period before his health started to really deteriorate, he had a great time. He went fishing, he went to the beach—it was like an advert for Australia, how great his time was. He quit his job, he was with his young sons, and he had a lovely time. But his treatment stopped working. He had had every treatment and, even though he was on the pathway and had started the voluntary assisted dying process, he was still having immunotherapy. He wanted to live. His family wanted him to live. But he got to the point where he knew he was absolutely not going to live, and that it was a matter of time. He said that he was afraid not of dying, but of dying in an awful way. He was worried his lungs were filling up with fluid. He thought he might have a heart attack. He was afraid of that happening; he was not afraid of dying. He was not depressed but he knew what was coming. He felt, in his own words, “I’m just sitting here waiting to die.”

He had had experience of a friend whose wife had died, and she got so bad that her young son could not visit her any more because it was too frightening for him. My brother’s children will remember who he was: this big, 6-foot-6, rugby-playing, fun dad. He got to choose: “Actually, I’m ill enough, I’m frightened of what might come down, which I know is going to happen anyway, and I choose now.”

[Kim Leadbeater]

Q 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.

[Kim Leadbeater]

Thank you so much.

Pat Malone: My experience with my father was entirely different. My daughter, who was seven at the time, reminded me recently, when I was putting my thoughts together for this, that in his last weeks she had visited him, and I had taken her into a side room and told her not to expect to see the grandpa that she knew, because he was very, very ill and he did not look anything like she would expect. She said she was very thankful that I did that, because she was stunned and shocked when she saw him. He was like a 1,000-year-old corpse, he was moving, and his eyes were yellow, and that is how she remembers him—she does not remember any of the good times. My sister, who lived close by, was with him most of the time, and she just sat by his bed and prayed for his heart to stop.

We were all shell-shocked when he did finally die. As I say, that informed the decisions that were made about suicide by my sister and brother. Had he been a farm animal, we would have been prosecuted for causing unnecessary suffering, but he was a man so he was not entitled to that sort of consideration. I remember him in that horrible ward breathing his last. The only time he moved in the last days was to cough up blood. For a man who had asked to be relieved of that burden, who had asked for an act of mercy, a week before, and it had been denied him—I cannot understand how anybody would deny a dying man a deliverance.

When my brother died, he and my sister-in-law had been together since they were 11 years old. He was only 53, so they had already known each other for 40 years. She had shared his suffering while he was being driven around the country looking for diagnoses and, ultimately, looking for doctors who would help him commit suicide. His weight had gone from 18 stone to 8 stone, and he was bright yellow as well. He was suffering all the time and she was suffering with him. She was relieved as well as grieving when he actually died—and then the police were at the door. The investigation went on until his inquest eight months later. The police were as helpful and sensitive as they could possibly be. Vicky got the impression that they wanted her to give the wrong answer—when they said, “Did you know what he was going to do?” she said, “Yes, I did”; to “Could you have stopped him?” she said, “Yes, he was weak as a kitten”; and to “Could you have resuscitated him?” she said “Yes,” because she had had some nursing training, and so on—and with every answer they just collapsed a little bit more.

Ultimately, at the inquest there was an anomaly in his suicide note. It was written in two different colours of ink, and the police investigated whether it could have been written at different times, possibly by different people. Giving evidence at his inquest, the police said that they thought his pen had run out—there was a squiggle at the top where it changed from black to blue—and they said that they were not proceeding with any idea that there had been positive involvement in his suicide.

I have a note of the transcript of what the coroner said, which reads: “I don’t want to make any more of this than I absolutely have to. I simply record therefore that Michael Malone took his own life. He did so quite deliberately and having made appropriate preparations, and so it’s not a case of my saying that he did so while the balance of his mind was disturbed, because it clearly was not. It was a decision that he took and I have every sympathy with that decision in so far as a coroner is allowed to say that.”

The police were very sympathetic. The coroner was very sympathetic. Danny Kruger is very sympathetic. But sympathy only goes so far, and I am glad that this Committee is now looking at exactly the people who matter first in this issue, who cannot be here to talk for themselves.

Liz Reed: In answer to the first point, about anything we would change or do differently, I think actually my brother’s case was dealt with really well and there were checks and balances along the whole way: “Does he meet the eligibility criteria?”—obviously—“but also, does he want to?” His wife was involved in the process with him, and he was checked constantly. A doctor administered for him, and he had met him already. He knew him and had a rapport with him. He had a few jokes with him at the end. So from that perspective, I do not think so. It is slightly different in Australia, in that it does not have to have a High Court judge, so the process feels a bit more streamlined than it is here, and maybe the access would be slightly different because of that.

In terms of the grief, I think anyone that knows someone who has been through a terminal illness knows that there is a level of anticipatory grief that comes with that—the waking up every morning thinking, “Has it been tonight? What happens next? What’s today?” Because when someone is in the final stages of their life, which my brother was, there is always something every day: “Oh, he’s got to have fluid drained from his heart today,” or, “Oh, this has happened.” There is always something, so that grief starts coming on before the person has even died.

The day my brother died we sat outside in the courtyard and had a glass of champagne. He chose a Bob Dylan song that he wanted to die to. It was extremely peaceful. It was seconds. And he got to say all the things, have all the conversations, speak to our parents—that sort of real American “closure”. That is what he got, and we were not sitting around thinking, “I wish I’d said this. I missed it,” or, “I was off doing something with the kids.” We were all there: my mum, my dad, me, his wife. We sat there and held his hand—and what a gift.

[Sarah Olney (Richmond Park) (LD)]

Q Thank you all for coming today and for sharing these really personal recollections. I have one question, but to both Liz and Julie, if that is okay. According to the notes that I have here—apologies if I have got this wrong—in both your brother’s situation and your husband’s situation, it was administered by the doctor. The Bill proposes that the person who has made the choice about ending their life should self-administer a solution. I am really sorry if this causes you any distress, but, on reflection, do you think that a self-administration regime would have made a difference?

Liz Reed: I do not think so, no. I do not think it would have changed his mind. I am someone who is real squeamish, so I probably would not want to, because of how I feel about all that kind of stuff, but it would not have changed anything for him—no, absolutely not. But I think there is a comfort in having a doctor there administering that, “This is going to go as it should,” and there is a calm that comes with that.

Julie Thienpont: Guy being intensely private, as I mentioned before, he would have preferred less people around him at the time. There were two nurses, the family doctor and the administering doctor. They prepared the scene and put the drips in—they had to put one in each arm—and they had to be there in order to witness the whole thing. He would have preferred to have been able to do it himself, but I do not think the fact that it was administered by somebody else impacted in a negative way for him.

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[Kit Malthouse]

Q Julie, you said that you got to a point where Guy said to you that he had made his mind up. Had he made his mind up after conversations with doctors about what his options were?

Julie Thienpont: No. He made up his mind long before he was even sick. He felt that his mother had quite a traumatic passing, and said that she expressed a view that, had it been an option, she would have taken it. He had said from then, “That is the way I want to die. I want to die that way. I don’t want to be lingering in a bed, whether I am in pain or not. I don’t want that to happen.” That may not be something that I would choose, but that was his absolute choice—I have no doubt whatsoever. He said that to the team who had been looking after him when he first broached the subject, and I think they first of all thought he was not terribly serious. Then, when they realised he was, he said, “It’s my life, it’s my death—I want to choose.” I think that is what it is all about: allowing people that option to choose.

[Kim Leadbeater]

Q 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.

[The Chair]

May I offer all three of you the collective condolences of everybody on the Committee? I thank you for your bravery in attending today and for speaking to us. Thank you very much.

--- Later in debate ---

[Kim Leadbeater]

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?

[Kim Leadbeater]

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.

[Dr Shastri-Hurst]

Q My question is directed to Dr Mulholland. Thank you to the Royal College of General Practitioners for the helpful written evidence. I want to pick up on something in it, which is summarised in paragraph 6 but gone into in more detail in paragraph 7, and that is around the refusal of practitioners to engage in the assisted dying process. I note the wording that has been used by the Royal College, which is that GPs and any other healthcare professionals can refuse “on any ground”. That is distinct from the Abortion Act 1967, which in section 4(1) sets out that it can be a conscientious objection. Can you explain why you have decided to take what appears to be a broader expansion of that definition, and why you have chosen that particular wording?

Dr Mulholland: We are aware that we have a range of views in RCGP across general practitioners. Some of them have very strong views for or against based on moral grounds, and some of those are based on religious grounds—traditional conscientious objection grounds. But others do not want to take part in assisted dying just because they do not want to; they do not feel it is part of what being a GP is, or part of what they trained for.

In discussion with colleagues today, someone shared with me that for 35 years they have spent their time trying to extend the life of patients—that has been our role—and to help them towards the end of life. It is a philosophical change if they start to think about whether the patient’s life should end earlier. There are some colleagues who may decide that for those reasons, they do not want to take part in this. There will be others who very definitely do. We have that range, so we feel that a doctor or a health professional should have the right not to take part on any ground, and that should be protected—they should not feel the obligation to do something that they do not feel is within their wishes.

--- Later in debate ---

[Kim Leadbeater]

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.

[The Chair]

There are three people left who want to ask questions, so can I beg for brevity?