(1 year, 6 months ago)
Public Bill Committees
Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)
Q
Professor Owen: I think the answer to that is “Probably not,” given the current workforce. Another relevant point is that even if you were to insert into the Bill a very clear requirement for a consultant psychiatrist to be involved if there were concerns about mental health, what would happen in practice would be very different. You can see this in Oregon, whose law has a requirement for, essentially, a psychiatric referral in the case of mental health concern. Those referrals basically occur in less than 5% of cases; I think it is similar in California. Even if you put it in law, there is the question whether it will happen in practice. On the data, it does not. I think that that is a relevant consideration.
Q
Professor Hoyano: I have to say that I have real concerns, as a practising barrister, about how the provisions as currently drafted could work in terms of judicial oversight. There are a number of unusual functions, if I can express it that way, being attributed to the court. I need first of all to stress that the High Court’s family division, and the Court of Protection, regularly engage with life and death matters, but they are doing so in the context of an adversarial and not an inquisitorial system. However, since the 19th century we have had the invaluable institution of the Official Solicitor, who has investigatory powers or functions and who serves in court as an amicus curiae—a friend of the court—to assist the court in understanding where the issues lie and in calling witnesses. I do not think that it is feasible at all, in our current system, to have the court call witnesses or question them directly until they have been examined and cross-examined, if appropriate; the court can then put in questions and ask for clarification, as would happen normally now.
If we are to have a judicial oversight function as opposed to a panel of experts—to be honest, I think we already have the panel of experts: the doctors who are already involved in the different stages leading up to the final stage—the easiest approach would be for the investigatory function to be assigned to the office of the Official Solicitor, preferably with an individual who has expertise in this field and will be able to get experience by dealing with these cases. I point out that Lord Justice Munby himself—Sir James Munby, as he now is—represented the Official Solicitor in the seminal case on termination of life support, the Tony Bland case. We have a lot of experience in that area, in dealing with end-of-life decision making with the Official Solicitor, but I think that that role needs to be built into the legislation with very specific tasks set out, including an investigatory function.
The other current difficulty is that it is not clear at all what the procedure would be. With great respect to the drafters of the Bill, I have never before seen such a delegation of the most essential procedural structures entirely to rules of court in terms of practice directions or rules of practice; we do not do it in the family division and we do not do it in the Court of Protection. Exactly what has to happen needs to be set out.
It strikes me that the intention may be for the court to, in effect, certify that all the procedures have been correctly followed at the preliminary stages. What is not entirely clear is whether the court itself is required to investigate whether the criteria are satisfied. It reads like that, but I am not sure whether it is supposed to be a review function or a primary decision-making function.
This becomes even more difficult because of the way in which the Court of Appeal’s functions are ascribed. The Court of Appeal does not have power to summon witnesses; the Court of Appeal does not have power to question witnesses. In the criminal division, which is where I am primarily practising now, the court can hear expert evidence de bene esse in order to determine whether it should send a case back for a retrial on the basis of newly discovered evidence that was not originally available, but that evidence will be called by the defence. The defence will be putting the evidence in, the Crown will cross-examine and the court will ask any additional questions it wants to, but to have an original jurisdiction —in effect, what we call a trial de novo: a trial all over again—in the Court of Appeal is wholly inappropriate to an appellate jurisdiction. That needs to be completely rethought.
There is also a difficulty in that the right to appeal is very lopsided: only a patient can appeal a denial, not anyone else. If anyone has concerns about the probity and thoroughness of the preliminary stages, or thinks that the High Court judge sitting in the Court of Protection has made an error of law or has failed to follow the procedures, that needs to be reviewed by the Court of Appeal. We need an even-handed approach.
I can understand the motivation of not wanting busybody people, as happened in one case in Canada in which a wife had a religious objection to assisted dying, and yet there was no doubt that the husband had satisfied all the criteria. She went all the way to the Nova Scotia Court of Appeal because of her religious objections; it turned out that religion was a source of great dissension in the marriage anyway, but her church was egging her on. I know that you do not want that kind of situation, but I believe that this legislation has to be completely even-handed for it to work and for the system to acquire public respect.
Dr Simon Opher (Stroud) (Lab)
Q
Dr Ward: Which clause are we looking at?
Q
What we do know is that there is a combination. In two thirds of deaths in Belgium, I think, and in the United States, where I have visited, the first drug that is used is an anaesthetic, and then there is a paralysing agent. A paralytic drug is introduced, which often gives the impression that the patient is having a peaceful death, but we do not actually know what is going on beneath the surface. I am afraid to say that, from studies into people who have been on death row who have been legally executed, there is often evidence of brain trauma. Can you speak to this at all? We know that in a minority of cases real complications occur—it often takes a very long time for the patient to die, and there is vomiting and all sorts of distress. How can we improve what we know about the actual process of dying, and how can we reduce these terrible complications?
Claire Williams: I can only apologise, because I am here to give evidence about a model for collective decision making rather than about my experience with regard to these drugs. As you say, the potential side effects and prolonged deaths are something we will need to consider for these cases. We need to take evidence from other countries that have had this experiences. Apologies, but I cannot comment on this particular aspect.
Q
Dr Richards: Assisted dying is quite categorically different from the end-of-life scenarios you are talking about there, so you would expect a very different set of safeguards. It is a misunderstanding to think that assisted dying is of a piece with other life-ending decisions. It is really something quite different and requires a different framework.
Dr Tidball
Q
Dr Richards: Quantifying dignity or respect—
Q
Pat Malone: I am not familiar with the situation in Australia. The two suicides in my family were outwith the law, and the third death I was going to talk about was a natural death—we would call it a natural death—so I am sorry but I cannot make a comparison.
Liz Reed: The system in Australia is, as I said, quite similar to what is being proposed here. It felt like throughout that process for my brother, Rob, it was really caring and respectful. He was able to change his mind, which he did, in terms of dates and when it would happen. His views and the views of his family were also taken into account and, through the process, he was treated like a person with autonomy whose choices were being respected.
The Chair
Q
Julie Thienpont: I am Julie Thienpont, and my husband and I were living in Spain at the time. My husband was diagnosed with mesothelioma and given three months left to live, so he opted for assisted dying. It was quite a rigorous process in Spain. It only came into law there in 2021, and he was one of the very first people in the south of Spain to take the opportunity of assisted dying.
The Chair
Of course. Please do.
Julie Thienpont: This is hearsay, of course. I live in Guernsey now. It is a small island, so we know a lot of people. A lot of people know each other. I had something published in the Guernsey press fairly recently. A friend of mine had a relative in the local hospice, which is excellent—it is absolutely beautiful and the palliative care and the teams are second to none. However, her relative who was in there saw the newspaper and said, “Oh, my goodness! I wish this Bill would come to pass here. I wish it would have been in time for me.” He said, “I am getting excellent treatment, but I am sitting here waiting to die. My family are coming every day to watch me wait to die.” He lived for five more days and he actually expressed that even though his care was excellent, he really wanted to die sooner on his own terms.
Q
Liz Reed: Rob’s experience was that this law only came in in Queensland in January 2023, post his diagnosis. But it was an issue that had been in the press; he knew it was coming in and from diagnosis he thought it was something he might consider, and so he approached his doctor with that.
In terms of my view on whether doctors should bring this up—we are coming from a position of privilege where we have access to media; he knew this was going on, and I am sure there will be plenty of people who do not know. I do not really know, to be honest, where I sit on that. For our family and for my brother, it was absolutely the right thing to do. I cannot really answer.
Pat Malone: Some regulation and some guidance would not go amiss. My sister had fantastic support from her GP. She did a lot of extra work to meet the requirements of Dignitas, and my brother had exactly the opposite. When he went to his GP, for a long time he was told, “Oh, it’s just indigestion. Try Gaviscon.” Even when he went to his GP, in the light of his understanding of my father’s death, to say, “I think I’ve got pancreatic cancer,” his GP said, “No, it’s not—it’s just indigestion,” and so forth. It would not have mattered; an early diagnosis would have made no difference at all. But the GP was not very helpful and did not want to get involved.
When my brother died, my sister-in-law called the GP and the GP called the police. Before my brother was cold, the investigation started. If there was some way you could say to doctors, “This is what you can do, and this is what you can’t do. If you do not want to get involved, leave it to somebody who does because there are plenty of people who will”, and if that could be quantified somehow by a code of conduct—perhaps among the doctors, rather than in the Bill—that would be very useful.
Q
Julie Thienpont: No. He made up his mind long before he was even sick. He felt that his mother had quite a traumatic passing, and said that she expressed a view that, had it been an option, she would have taken it. He had said from then, “That is the way I want to die. I want to die that way. I don’t want to be lingering in a bed, whether I am in pain or not. I don’t want that to happen.” That may not be something that I would choose, but that was his absolute choice—I have no doubt whatsoever. He said that to the team who had been looking after him when he first broached the subject, and I think they first of all thought he was not terribly serious. Then, when they realised he was, he said, “It’s my life, it’s my death—I want to choose.” I think that is what it is all about: allowing people that option to choose.
Q
Prior to your personal experience, you might have had a different view or friends and family who had different views. For me, speaking to people who have had the experiences you have had, it becomes very clear that we have problems with the law as it stands, or the lack of the law as it stands. Would anybody like to share their own journey about that?
Pat Malone: From my standpoint, I did not give it a lot of thought until it started impacting on the family. But I understood exactly why my sister and my brother committed suicide. I would hope that this Bill could be enacted when my time comes.
Liz Reed: I had not given it a huge amount of thought; I am relatively young. I suppose if I was asked at the time I would have said, “Yes, sounds fine,” but I think I had also grossly misunderstood what it would mean for someone to go to Dignitas. There is a flippant comment that goes around—I can remember my dad saying it: “Oh, I’ll just go to Switzerland.” It is just not that easy. People I know and have met, like Pat, have had family members go to Dignitas, and it is actually a deeply traumatising experience. People’s lives are cut much shorter, they cannot enjoy their time and so on. I absolutely agree that I had not given it much thought.
I remember, on the day my brother died, getting back to where we were staying; I sat there and thought, “What would have happened to him?” I wrote to my MP, to say, “Hello, I am just wondering what would have happened, out of interest.” That is how I got involved. Had he been here, what would have happened to him and how long would he have had to limp on? You hear enough stories of people begging to die at the end of their lives, and I am really thankful that he did not have to.
Lewis Atkinson
Q
“the more serious the decision, the greater the level of capacity”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 30, Q3.]
and that it is used in tens, if not hundreds, of life and death cases in the NHS every week. The example he gave was someone refusing blood products that they would need to continue their life. In the light of that, I suppose I am a bit confused about your evidence saying that the MCA is not suitable for life or death decisions of this type. Do you think the MCA is not fit for purpose for those current life or death decisions that are being made, or is there something about the life or death decisions that would be made in an assisted dying context that makes that different?
Dr Price: The assumption that the Mental Capacity Act can translate neatly into this specific decision without a really clear sense of what that would look like in clinical practice is something that needs more careful thought.
I was involved in research in this area, and one of the things that I did was to scrutinise the concept of capacity as discussed in a number of forums—for example, the Commission on Assisted Dying, discussions in the House of Lords, and also interviews with doctors in England and Wales and in Oregon. There is a broad sense of what capacity is. For some, it is a very tight, cognitive definition that would mean that in practice, in assisted dying, most people would be found to be capacitous. Those who advocate a much broader sense of what capacity is—these can be contained within the framework of the Mental Capacity Act—would advocate a much broader sense of what that is, thinking about values and the person’s life experience and making more judgments, really, about that person’s life in a general sense.
What I do not think we have really pinned down is what concept of capacity is operating in the thoughts behind this Bill. Is it enough to say that we will essentially refer to the Mental Capacity Act, or do we need to be more specific about what is capacity for this decision? Is it sufficient to say, “We will refer out”, or do we need it on the face of the Bill so that anybody assessing capacity for this decision knows exactly what they should be doing and exactly how they should be having that conversation? Even though you may be operating within a legal framework, I think that the actual conversation —the actual content—will vary across practitioners. Is that good enough? Is that sufficient? Is that a good enough standard? When I do a capacity assessment, I have in mind that it may be appealed against—that is somebody’s right—and it should be available for scrutiny by a court. Essentially, that is the standard we are looking for, so it needs to be clear where the standard lies.
Q
You talked about a percentage who wish to hasten death. The people we are talking about are facing death in any event within a foreseeable period, and they may be contemplating a death that is not pleasant. Some of the characteristics you talked about are presumably to be expected and may not necessarily interfere with their ability to make rational decisions in what they believe is their own best interest. In those circumstances, I do not understand why the Mental Capacity Act would not apply. I understand that you may be coming at it from a practitioner point of view, but if I make a decision to decline treatment to hasten my own death, I am not sure I would necessarily see that as qualitatively different, from the point of view of my own capacity, from saying, “I know I am going to die in three months’ time and I would like you to assist me to die slightly earlier.” Why are the two qualitatively different, from an MCA point of view? At the moment, one would be dealt with through the MCA, but you are saying the second would not necessarily be.
Dr Price: You are equating a refusal of treatment, in capacity terms, to hastening death by assisted dying. If those two things are equated, in terms of the gravity and the quality of the decision, the Mental Capacity Act may well be sufficient, but there are differences. There are differences in the information that the person would need and what they would need to understand. They would need to be able to understand the impact of the substance they are taking and what the likely positives and negatives of that are—all of those things.
The informed consent process is different from a refusal of treatment, and the informed consent process feeds into the capacity assessment. This is an area where we need to think carefully about whether the processes of the Mental Capacity Act, as it stands, map neatly enough on to that decision to make it workable.
Q
Dr Mulholland: The shape of the service is not set out in the Bill. We would say that GPs need to have a space where they can step away from it: that is the key point that we want to get across. For those who want to take part, it may be that they decide to do it, but it would have to sit outside the core general medical services that we provide at the moment. This is an additional thing; this is not part of our core job. We think that a separate service—it may not just be GPs; there may be lots of different practitioners and health professionals involved —would sit better with that. You could then assess the capacity and assess those other parts that are so important and are in the Bill at the later stages.
The GP may have a role, but that would be very much up to the individual GP to decide. It would not be set out that they should be taking part. They would then probably be part of this additional service to which the others who are not taking part could signpost. We just want to make sure that there is that clear space.
(1 year, 6 months ago)
Public Bill CommitteesQ
Alex Greenwich: Our experience in New South Wales was based on evidence from doctors and people with the lived experience of a terminal illness. It is an extremely confronting thing to be told that you have a terminal illness, to be told that you have six months to live or to be told, if you have advanced bowel cancer, for example, that your end of life will look like you are going to be choking on your own faeces.
In New South Wales, we decided that it is important that that person, who has been told that they have a terminal illness, is able to have a full conversation with their doctor about all their options—one of those options being that they could have a better death than their illness would otherwise provide them with. We decided that being able to really talk through with your doctor all your options—from access to palliative care, to social supports, to what the process of voluntary assisted dying looks like—was so important. We believe that it is working really well in practice. We would be concerned about gagging those conversations, as that would ensure that a patient is not receiving the full information about their end-of-life choices.
Q
Alex Greenwich: Yes. In our legislation we make it clear that the doctor has to make sure that the patient is aware of their palliative care options, and we have referral pathways for psychosocial support as well. All that is prescribed in the legislation. Obviously, in the training for voluntary assisted dying a lot of that stuff is covered. In the legislation, we also define the things we want to have in that training.
Doctors?
Professor Blake: In Western Australia, which was the second jurisdiction to introduce voluntary assisted dying—
(1 year, 6 months ago)
Public Bill Committees
Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)
Q
Professor Owen: I think the answer to that is “Probably not,” given the current workforce. Another relevant point is that even if you were to insert into the Bill a very clear requirement for a consultant psychiatrist to be involved if there were concerns about mental health, what would happen in practice would be very different. You can see this in Oregon, whose law has a requirement for, essentially, a psychiatric referral in the case of mental health concern. Those referrals basically occur in less than 5% of cases; I think it is similar in California. Even if you put it in law, there is the question whether it will happen in practice. On the data, it does not. I think that that is a relevant consideration.
Q
Professor Hoyano: I have to say that I have real concerns, as a practising barrister, about how the provisions as currently drafted could work in terms of judicial oversight. There are a number of unusual functions, if I can express it that way, being attributed to the court. I need first of all to stress that the High Court’s family division, and the Court of Protection, regularly engage with life and death matters, but they are doing so in the context of an adversarial and not an inquisitorial system. However, since the 19th century we have had the invaluable institution of the Official Solicitor, who has investigatory powers or functions and who serves in court as an amicus curiae—a friend of the court—to assist the court in understanding where the issues lie and in calling witnesses. I do not think that it is feasible at all, in our current system, to have the court call witnesses or question them directly until they have been examined and cross-examined, if appropriate; the court can then put in questions and ask for clarification, as would happen normally now.
If we are to have a judicial oversight function as opposed to a panel of experts—to be honest, I think we already have the panel of experts: the doctors who are already involved in the different stages leading up to the final stage—the easiest approach would be for the investigatory function to be assigned to the office of the Official Solicitor, preferably with an individual who has expertise in this field and will be able to get experience by dealing with these cases. I point out that Lord Justice Munby himself—Sir James Munby, as he now is—represented the Official Solicitor in the seminal case on termination of life support, the Tony Bland case. We have a lot of experience in that area, in dealing with end-of-life decision making with the Official Solicitor, but I think that that role needs to be built into the legislation with very specific tasks set out, including an investigatory function.
The other current difficulty is that it is not clear at all what the procedure would be. With great respect to the drafters of the Bill, I have never before seen such a delegation of the most essential procedural structures entirely to rules of court in terms of practice directions or rules of practice; we do not do it in the family division and we do not do it in the Court of Protection. Exactly what has to happen needs to be set out.
It strikes me that the intention may be for the court to, in effect, certify that all the procedures have been correctly followed at the preliminary stages. What is not entirely clear is whether the court itself is required to investigate whether the criteria are satisfied. It reads like that, but I am not sure whether it is supposed to be a review function or a primary decision-making function.
This becomes even more difficult because of the way in which the Court of Appeal’s functions are ascribed. The Court of Appeal does not have power to summon witnesses; the Court of Appeal does not have power to question witnesses. In the criminal division, which is where I am primarily practising now, the court can hear expert evidence de bene esse in order to determine whether it should send a case back for a retrial on the basis of newly discovered evidence that was not originally available, but that evidence will be called by the defence. The defence will be putting the evidence in, the Crown will cross-examine and the court will ask any additional questions it wants to, but to have an original jurisdiction —in effect, what we call a trial de novo: a trial all over again—in the Court of Appeal is wholly inappropriate to an appellate jurisdiction. That needs to be completely rethought.
There is also a difficulty in that the right to appeal is very lopsided: only a patient can appeal a denial, not anyone else. If anyone has concerns about the probity and thoroughness of the preliminary stages, or thinks that the High Court judge sitting in the Court of Protection has made an error of law or has failed to follow the procedures, that needs to be reviewed by the Court of Appeal. We need an even-handed approach.
I can understand the motivation of not wanting busybody people, as happened in one case in Canada in which a wife had a religious objection to assisted dying, and yet there was no doubt that the husband had satisfied all the criteria. She went all the way to the Nova Scotia Court of Appeal because of her religious objections; it turned out that religion was a source of great dissension in the marriage anyway, but her church was egging her on. I know that you do not want that kind of situation, but I believe that this legislation has to be completely even-handed for it to work and for the system to acquire public respect.
Dr Simon Opher (Stroud) (Lab)
Q
Dr Ward: Which clause are we looking at?
Q
What we do know is that there is a combination. In two thirds of deaths in Belgium, I think, and in the United States, where I have visited, the first drug that is used is an anaesthetic, and then there is a paralysing agent. A paralytic drug is introduced, which often gives the impression that the patient is having a peaceful death, but we do not actually know what is going on beneath the surface. I am afraid to say that, from studies into people who have been on death row who have been legally executed, there is often evidence of brain trauma. Can you speak to this at all? We know that in a minority of cases real complications occur—it often takes a very long time for the patient to die, and there is vomiting and all sorts of distress. How can we improve what we know about the actual process of dying, and how can we reduce these terrible complications?
Claire Williams: I can only apologise, because I am here to give evidence about a model for collective decision making rather than about my experience with regard to these drugs. As you say, the potential side effects and prolonged deaths are something we will need to consider for these cases. We need to take evidence from other countries that have had this experiences. Apologies, but I cannot comment on this particular aspect.
Q
Dr Richards: Assisted dying is quite categorically different from the end-of-life scenarios you are talking about there, so you would expect a very different set of safeguards. It is a misunderstanding to think that assisted dying is of a piece with other life-ending decisions. It is really something quite different and requires a different framework.
Dr Tidball
Q
Dr Richards: Quantifying dignity or respect—
Q
Pat Malone: I am not familiar with the situation in Australia. The two suicides in my family were outwith the law, and the third death I was going to talk about was a natural death—we would call it a natural death—so I am sorry but I cannot make a comparison.
Liz Reed: The system in Australia is, as I said, quite similar to what is being proposed here. It felt like throughout that process for my brother, Rob, it was really caring and respectful. He was able to change his mind, which he did, in terms of dates and when it would happen. His views and the views of his family were also taken into account and, through the process, he was treated like a person with autonomy whose choices were being respected.
The Chair
Q
Julie Thienpont: I am Julie Thienpont, and my husband and I were living in Spain at the time. My husband was diagnosed with mesothelioma and given three months left to live, so he opted for assisted dying. It was quite a rigorous process in Spain. It only came into law there in 2021, and he was one of the very first people in the south of Spain to take the opportunity of assisted dying.
The Chair
Of course. Please do.
Julie Thienpont: This is hearsay, of course. I live in Guernsey now. It is a small island, so we know a lot of people. A lot of people know each other. I had something published in the Guernsey press fairly recently. A friend of mine had a relative in the local hospice, which is excellent—it is absolutely beautiful and the palliative care and the teams are second to none. However, her relative who was in there saw the newspaper and said, “Oh, my goodness! I wish this Bill would come to pass here. I wish it would have been in time for me.” He said, “I am getting excellent treatment, but I am sitting here waiting to die. My family are coming every day to watch me wait to die.” He lived for five more days and he actually expressed that even though his care was excellent, he really wanted to die sooner on his own terms.
Q
Liz Reed: Rob’s experience was that this law only came in in Queensland in January 2023, post his diagnosis. But it was an issue that had been in the press; he knew it was coming in and from diagnosis he thought it was something he might consider, and so he approached his doctor with that.
In terms of my view on whether doctors should bring this up—we are coming from a position of privilege where we have access to media; he knew this was going on, and I am sure there will be plenty of people who do not know. I do not really know, to be honest, where I sit on that. For our family and for my brother, it was absolutely the right thing to do. I cannot really answer.
Pat Malone: Some regulation and some guidance would not go amiss. My sister had fantastic support from her GP. She did a lot of extra work to meet the requirements of Dignitas, and my brother had exactly the opposite. When he went to his GP, for a long time he was told, “Oh, it’s just indigestion. Try Gaviscon.” Even when he went to his GP, in the light of his understanding of my father’s death, to say, “I think I’ve got pancreatic cancer,” his GP said, “No, it’s not—it’s just indigestion,” and so forth. It would not have mattered; an early diagnosis would have made no difference at all. But the GP was not very helpful and did not want to get involved.
When my brother died, my sister-in-law called the GP and the GP called the police. Before my brother was cold, the investigation started. If there was some way you could say to doctors, “This is what you can do, and this is what you can’t do. If you do not want to get involved, leave it to somebody who does because there are plenty of people who will”, and if that could be quantified somehow by a code of conduct—perhaps among the doctors, rather than in the Bill—that would be very useful.
Q
Julie Thienpont: No. He made up his mind long before he was even sick. He felt that his mother had quite a traumatic passing, and said that she expressed a view that, had it been an option, she would have taken it. He had said from then, “That is the way I want to die. I want to die that way. I don’t want to be lingering in a bed, whether I am in pain or not. I don’t want that to happen.” That may not be something that I would choose, but that was his absolute choice—I have no doubt whatsoever. He said that to the team who had been looking after him when he first broached the subject, and I think they first of all thought he was not terribly serious. Then, when they realised he was, he said, “It’s my life, it’s my death—I want to choose.” I think that is what it is all about: allowing people that option to choose.
Q
Prior to your personal experience, you might have had a different view or friends and family who had different views. For me, speaking to people who have had the experiences you have had, it becomes very clear that we have problems with the law as it stands, or the lack of the law as it stands. Would anybody like to share their own journey about that?
Pat Malone: From my standpoint, I did not give it a lot of thought until it started impacting on the family. But I understood exactly why my sister and my brother committed suicide. I would hope that this Bill could be enacted when my time comes.
Liz Reed: I had not given it a huge amount of thought; I am relatively young. I suppose if I was asked at the time I would have said, “Yes, sounds fine,” but I think I had also grossly misunderstood what it would mean for someone to go to Dignitas. There is a flippant comment that goes around—I can remember my dad saying it: “Oh, I’ll just go to Switzerland.” It is just not that easy. People I know and have met, like Pat, have had family members go to Dignitas, and it is actually a deeply traumatising experience. People’s lives are cut much shorter, they cannot enjoy their time and so on. I absolutely agree that I had not given it much thought.
I remember, on the day my brother died, getting back to where we were staying; I sat there and thought, “What would have happened to him?” I wrote to my MP, to say, “Hello, I am just wondering what would have happened, out of interest.” That is how I got involved. Had he been here, what would have happened to him and how long would he have had to limp on? You hear enough stories of people begging to die at the end of their lives, and I am really thankful that he did not have to.
Lewis Atkinson
Q
“the more serious the decision, the greater the level of capacity”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 30, Q3.]
and that it is used in tens, if not hundreds, of life and death cases in the NHS every week. The example he gave was someone refusing blood products that they would need to continue their life. In the light of that, I suppose I am a bit confused about your evidence saying that the MCA is not suitable for life or death decisions of this type. Do you think the MCA is not fit for purpose for those current life or death decisions that are being made, or is there something about the life or death decisions that would be made in an assisted dying context that makes that different?
Dr Price: The assumption that the Mental Capacity Act can translate neatly into this specific decision without a really clear sense of what that would look like in clinical practice is something that needs more careful thought.
I was involved in research in this area, and one of the things that I did was to scrutinise the concept of capacity as discussed in a number of forums—for example, the Commission on Assisted Dying, discussions in the House of Lords, and also interviews with doctors in England and Wales and in Oregon. There is a broad sense of what capacity is. For some, it is a very tight, cognitive definition that would mean that in practice, in assisted dying, most people would be found to be capacitous. Those who advocate a much broader sense of what capacity is—these can be contained within the framework of the Mental Capacity Act—would advocate a much broader sense of what that is, thinking about values and the person’s life experience and making more judgments, really, about that person’s life in a general sense.
What I do not think we have really pinned down is what concept of capacity is operating in the thoughts behind this Bill. Is it enough to say that we will essentially refer to the Mental Capacity Act, or do we need to be more specific about what is capacity for this decision? Is it sufficient to say, “We will refer out”, or do we need it on the face of the Bill so that anybody assessing capacity for this decision knows exactly what they should be doing and exactly how they should be having that conversation? Even though you may be operating within a legal framework, I think that the actual conversation —the actual content—will vary across practitioners. Is that good enough? Is that sufficient? Is that a good enough standard? When I do a capacity assessment, I have in mind that it may be appealed against—that is somebody’s right—and it should be available for scrutiny by a court. Essentially, that is the standard we are looking for, so it needs to be clear where the standard lies.
Q
You talked about a percentage who wish to hasten death. The people we are talking about are facing death in any event within a foreseeable period, and they may be contemplating a death that is not pleasant. Some of the characteristics you talked about are presumably to be expected and may not necessarily interfere with their ability to make rational decisions in what they believe is their own best interest. In those circumstances, I do not understand why the Mental Capacity Act would not apply. I understand that you may be coming at it from a practitioner point of view, but if I make a decision to decline treatment to hasten my own death, I am not sure I would necessarily see that as qualitatively different, from the point of view of my own capacity, from saying, “I know I am going to die in three months’ time and I would like you to assist me to die slightly earlier.” Why are the two qualitatively different, from an MCA point of view? At the moment, one would be dealt with through the MCA, but you are saying the second would not necessarily be.
Dr Price: You are equating a refusal of treatment, in capacity terms, to hastening death by assisted dying. If those two things are equated, in terms of the gravity and the quality of the decision, the Mental Capacity Act may well be sufficient, but there are differences. There are differences in the information that the person would need and what they would need to understand. They would need to be able to understand the impact of the substance they are taking and what the likely positives and negatives of that are—all of those things.
The informed consent process is different from a refusal of treatment, and the informed consent process feeds into the capacity assessment. This is an area where we need to think carefully about whether the processes of the Mental Capacity Act, as it stands, map neatly enough on to that decision to make it workable.
Q
Dr Mulholland: The shape of the service is not set out in the Bill. We would say that GPs need to have a space where they can step away from it: that is the key point that we want to get across. For those who want to take part, it may be that they decide to do it, but it would have to sit outside the core general medical services that we provide at the moment. This is an additional thing; this is not part of our core job. We think that a separate service—it may not just be GPs; there may be lots of different practitioners and health professionals involved —would sit better with that. You could then assess the capacity and assess those other parts that are so important and are in the Bill at the later stages.
The GP may have a role, but that would be very much up to the individual GP to decide. It would not be set out that they should be taking part. They would then probably be part of this additional service to which the others who are not taking part could signpost. We just want to make sure that there is that clear space.
(1 year, 6 months ago)
Public Bill Committees
The Chair
Thank you. Some hon. Members have already indicated that they wish to ask questions; if others do so, the Clerk will take note and I will come to them.
Q
Professor Esmail: In all honesty, I had not thought about it like that. I cannot say—I do not have the expertise to know—whether it is deterrence. I think that coercion is something that we should be concerned about. My view is that at the moment we do not even know whether it occurs. Currently, what happens? For example, if someone chooses to go to Dignitas, we do not know whether they have been coerced to go or not. If someone chooses to withdraw life-supporting treatment, we do not know whether this happens or not. It is good that it is acknowledged, and it is good that we should try to put in place some safeguards so that we understand it, we monitor it and we have a sanction of some sort.
Richard Robinson: Safeguarding is a significant issue. I think that coercion is underplayed significantly in cases of abuse of older people. The abuse of older people is seen as a minority issue and—we as a charity would argue—that makes much of the difference. We deal with about 75,000 people annually, as I said, and about 2.6 million people are affected by abuse every year.
One of the biggest issues we face is the fact that we have no idea of the levels of training that healthcare professionals and the judiciary receive to understand and recognise coercion. That leaves us in a situation where medical professionals say that coercion in these circumstances is minimal, but people need to understand what coercion is and how to recognise the signs of it in the first place, especially bearing in mind that the vast majority of cases that we see take place in the home and by family, rather than by professionals.
The other point that I would make about coercion is that there is lots of talk about it being limited to victims of abuse. I would argue that what goes on behind closed doors is the big issue. How do we ensure that medical professionals can see what is going on behind closed doors and build up a relationship with that individual? As a charity, we deal with these people every day, and it is difficult enough for us to build up a relationship. A medical professional who sees them in isolation over a short period of time to make these decisions does not have that opportunity. There is an awful lot to do to ensure safeguarding and to put that kind of deterrent in place.
Q
Richard Robinson: We take calls from professionals all the time, and we give training all the time. Safeguarding older people requires specialist training—it is a specialist issue—and although it may not be a solution, it is certainly on the pathway. We would also like to see refresher training built in. Any kind of amendment that includes training—not just on the medical side, but for anyone involved in decision making, like the judiciary—would be a real step forward.
Are we asking one question each, Mr Dowd, or may I ask two if I am quick?
The Chair
We will now hear oral evidence from Dr Lewis Graham from the University of Cambridge; Baroness Kishwer Falkner, chair of the Equality and Human Rights Commission; Fazilet Hadi, who is head of policy for Disability Rights UK; and Lord Sumption, former justice of the Supreme Court. For this session we have until 4 pm. Will the witnesses please introduce themselves for the record?
Dr Graham: My name is Dr Lewis Graham. I am a fellow in law at Christ’s College, Cambridge. I work on human rights law and I have a particular interest in the European Court of Human Rights and the European convention on human rights. My take-home message today is that the provisions of the Bill would not, or are very unlikely to, breach the European convention on human rights.
Lord Sumption: My name is Jonathan Sumption. I was a justice of the Supreme Court between 2012 and 2018. I also wrote a substantial judgment in the Nicklinson case.
Baroness Falkner: I am Kishwer Falkner. I am the chair of the Equality and Human Rights Commission and have been a Member of the House of Lords since 2004.
Fazilet Hadi: Good afternoon, everyone. I am Fazilet Hadi. I am head of policy at Disability Rights UK, which is a disabled people’s led organisation, meaning that the majority of our trustees and staff—and myself—are disabled people.
Q
Lord Sumption: This is about clause 12, and my own view is that clause 12 is unnecessary and in some respects undesirable. I have seen the proposed amendment relating to a panel. That would resolve the problem of the shortage of capacity in the High Court; it would not, however, resolve the problem of the over-engineering of the procedural provisions of the Bill.
The Chair
Excuse me, Lord Sumption, but could you speak up? We are finding it difficult to hear at this end.
Lord Sumption: I am so sorry. The concern that I have about clause 12 in its current form is that it is not entirely clear what the judge is supposed to do. There are many things that he is entitled to do, but the real question is: is he there in order to ensure that the two doctors have done their job and that the ducks are all in a row, or is he there to form his own view on all of those matters, completely independently of those who have already given their certificates? If it is the latter, one is talking about quite a time-consuming process involving a lot of additional evidence. It seems to me that this is a protection that no other country, so far as I am aware, among those that have authorised one or other form of assisted dying has included. I think it confers a protection that is largely illusory and it is undoubtedly very time-consuming.
I also have a residual feeling, which you can fairly describe as a prejudice, that it involves the intervention of the state in an intensely personal and agonising process, which, to my instinctive mind, is inappropriate. I think that most of those things, apart from the capacity problem, would be equally true of the tribunal option.
Q
Lord Sumption: I am aware of them. Basically, they fall into two categories. There are those, like Spain, that have a process whereby a tribunal deals with the matter in advance—and, in fact, in the case of Spain in arrears as well—and there are those like the Netherlands, where it is a retrospective process. I have heard it said that a retrospective process is of no use. I am not sure I agree with that. I think there is a case for having a retrospective process to ensure that the practitioners are doing what they are supposed to be doing and that any objectionable tendencies are stamped out at an early stage.
It seems to me that if you are going to have the opinion of two doctors, which is almost universal as a requirement in these cases, I do not think that it is necessary to have a third layer, and in some respects it is undesirable. I appreciate that the House must have concluded that it was in favour of it, but my own view is that I am not.
The Minister of State, Ministry of Justice (Sarah Sackman)
Q
Lord Sumption: That is really the critical question when you ask yourself how useful this process is. Obviously, they will have the opinions of the two referee doctors—they will have their rather pro forma statements, and possibly statements they will make by way of expansion of those—but if they are going to add something of value in the way of safeguards, it seems to me that they have got to carry out an independent investigation of those same matters. That would involve getting, presumably, a third expert adviser and proactively seeking evidence about, for example, the patient’s state of mind. It seems to me that that is duplicative.
Obviously, there is no system that you cannot have a greater degree of assurance about, but I am struck by the fact that no other jurisdiction has felt it necessary to have a process as elaborate as this for the purpose of duplicating the expert views already required.
The Chair
Order. I think we can tease those issues out from our questions.
Dr Neerkin: My name is Jane Neerkin. I am a consultant in palliative care at UCH and the National Hospital for Neurology and Neurosurgery. I have been in palliative care for over 25 years, and I have also been in medical education as the training programme director for palliative medicine. I am pro assisted dying for terminally ill patients, although I have not actively campaigned for it. I am not here representing any organisation today, but to give a view and representation of my lived experience of working with terminally ill patients over the last 25 years.
Sam Royston: I am Sam Royston. I am the executive director for research and policy at Marie Curie. For those not aware, Marie Curie is an end-of-life care provider. We have hospices across the UK and deliver community nursing services to support people in their homes, and we also undertake research and policy work into issues affecting people’s end-of-life experience.
Q
Toby Porter: I would defer to a physician on this point; I am a non-clinical person.
Dr Hussain: For the people I have seen in my end-of-life care practice who want assisted dying and have been persistent with that, even when they have accessed specialist palliative care—I have seen them, and they are a small handful—the decision is not usually related to symptoms. It is related to control being really important. I am not personally, in principle, against assisted dying. I think it is quite distressing, when control is important, to feel that you do not have that.
The other side of it is people much closer to the end of life, and this comes to your point. Perhaps they have had a long trajectory and are in the last few weeks. The symptoms may not be as best controlled as they want them to be, or they are just fed up, and the family have also got to the stage where they are accepting of that. I do not think the Bill is actually fit for purpose, and there are many of those than those who are doing it for control purposes. The length of time that it would take to go through the Bill would mean that they would not be eligible.
Q
Dr Hussain: I think it is really complex, isn’t it? The very existence of the Bill affects everyone who needs end-of-life care. It opens a Pandora’s box of risk. For those people, absolutely—when I am a physician and I am in front of them, I think, “What is the best palliative care I can provide for them?” However, when I put my population health hat on, I think about how it could impact the whole community. As I said, I work predominantly with an ethnically diverse population. I have gone into those communities and I have spoken to them about this Bill. What they say overwhelmingly to me is, “We’re scared. We’re really fearful that this is going to result in a disproportionate impact on our community. We have seen that through covid and we’re so scared. We already don’t access your services. We’re really worried that we won’t want to access them any more, and we won’t want to access the hospitals.”
That is the conundrum. If I want to open it up for that quite small proportion of people towards the end of life, I risk that much bigger group. That is why the decision is very tricky for me, even as a frontline clinician who is not against assisted dying in principle.
Dr Neerkin: I would like to break it down, thinking about what a terminally ill person is within the Bill. You have heard from quite a lot of people, and sometimes it is very clearcut, such as for cancer patients who have quite a clear trajectory in those last few months of life. It is much clearer for them than, maybe, for somebody with a neurological condition. People with those neurodegenerative disorders can go on for a much longer period of time. When you can recognise that they are already in the last six months of life, invariably by that point they may well have lost capacity to make those decisions. They may well not have the physical ability to take the medication at that time.
That is when you get those potential discrepancies: when you are defining “terminally ill” and whether or not one size fits every disease process for patients. I think that is aside from how much pain they are suffering, and whether or not it is because they want to retain control, it is also about the speed with which people will need to receive assisted dying. When you are rapidly deteriorating from a cancer prognosis, it may be that the two or three-week delay between different doctors, and everybody assessing it, might be too long. We have already heard, over the past couple of days, that people invariably die before they get the chance to take the medication themselves. However, there are also people who have a slower decline, who can actually have that long period of time for reflection, and that is quite important. I am not sure if that approaches the answer to your question in a slightly different way to Dr Hussain’s answer.
Dr Opher
Q
Toby Porter: Can I take that? That is something we feel quite passionately about. People pointing out problems with palliative care in the UK is not a pro or anti position in this debate. It is a statement of fact. Clearly, extrapolating that through, an outcome in which someone chose an assisted death because of a real or imagined fear that they could not get pain relief or other symptom alleviation, or because their family would not get support through their illness, would clearly be a moral and practical disgrace for any country. I think that is why people who are passionate about palliative care would obviously be concerned, but I think they also would be very encouraged by the fact that everybody who spoke at the debate in November, without exception, expressed commitment for improved palliative care, irrespective of what they felt about the rights and wrongs of the motion that they were considering.
Dr Hussain: I do not think I have come across a palliative care physician who does not accept that not all symptoms can be managed, but there is a lot that we can do. In my experience and in that of a lot of my colleagues, this is a tiny proportion of patients. Usually there is stuff we can do. Often—in all those cases in my practice, I have admitted them to a hospice and they have had a holistic assessment. If needed, some of them have gone under carefully titrated sedation. There is a lot we can do. That does not mean that we do not need assisted dying. Like I say, there are patients I have come across who do need that.
The complexity here, though, is that making it available to those people that I would love to have it available for, because that is a good death for them, opens this risk to everyone. Like I say, ethnic minority communities are afraid that they are going to be targeted and they are saying that they will not access palliative care services. There are people who may want it because they feel coerced, even internally, because they feel like a burden, or due to social issues, especially those people who are structurally disadvantaged. That is what I find really difficult to weigh up. We cannot pretend that that is not going to happen. That is a much bigger proportion of the patients I see in Bradford.
Sam Royston: No matter how passionately they believe in assisted dying, no one I have ever spoken to has said they think that a good reason for choosing an assisted death is that people cannot access the care and support that they need at the end of life. Yet we know that that is the reality for far too many people at the moment. We know that about 90% of people who die need palliative care and it has been estimated that about one in four of them does not receive the care and support that they need. We know that many people are dying in emergency departments following unnecessary admissions to hospital, or dying in the back of an ambulance.
Beyond clinical support, we also know that there are many thousands of people for whom a terminal diagnosis means being pushed into poverty. We have just estimated that more than 100,000 people each year die while living in poverty. You are particularly likely to die in poverty if you are unfortunate enough to become terminally ill and are working age. In fact, you are much more likely to be in poverty if you are working age if you are terminally ill than if you are not.
Some of these problems are only going to grow in coming years. We project that over the coming 25 years, the need for palliative care is going to rise by about 25%. That is around 150,000 more people each year needing palliative care. And we have no plan—no plan at all—to address the scale of that challenge. This crisis in our health and social care system in the support we provide to dying people cannot be the reason for introducing assisted dying. We need to make sure that there is a plan to improve palliative care support for people at the end of life.
That is why we have proposed an additional clause to the Bill that would require an assessment of current availability, quality and distribution of health and care services for people at the end of life—something that, unbelievably, does not exist at the moment— quality standards for palliative and end-of-life care services; a national strategy for palliative care, which has not existed since 2008; a long-term sustainable funding strategy for palliative and end-of-care life care; and an approach to establishing NHS leadership for the delivery of that strategy. Those are the key things that we need to see to make sure that we have a palliative care system that is fit for the future.
(1 year, 6 months ago)
Public Bill CommitteesQ
Dr Cox: I and my colleagues have concerns about the safeguards in the Bill. It is not just the capacity assessment; we also acknowledge that prognosis is incredibly difficult to assess accurately. I would say that you cannot always identify coercion. You can identify it when it is very obvious and extreme, but when it is very subtle, we cannot always identify it. After the event, there is nobody to tell us about coercion, so it is very difficult to monitor.
The other thing that concerns me is that we are putting all these assessments on the shoulders of two doctors individually, followed up by a High Court judge. In any other clinical practice, when we are making very serious decisions, we know that shared decisions are much better quality, much more robust and much safer. In clinical practice, we make all these decisions in multi-professional teams. I would never make these decisions independently of my team, because the perspective they bring can help me to understand things that I am not seeing.
The thing that I am really concerned about is how it is possible for these doctors, even with training, to have a good understanding of all illnesses in order that they can identify prognosis—neurological, cancer and every other. How is it possible for them to really understand capacity when capacity is not an absolute; it does change and it is very complex to assess? How is it possible for them to see all cases of coercion, which can be invisible?
In addition to that, are those doctors going to be looking out for opportunities to refer to palliative care when they see somebody who has suffering that could be addressed and may change their mind? Are they looking out for untreated depression? We know that treatment of depression can result in people changing their minds about wanting to die. It is a lot to ask these individual doctors to do, and that really concerns me.
Q
Dr Cox: There are two differences that I would identify. The examples you give are of somebody who may be naturally dying and is being kept alive, so the difference is that you are withdrawing a treatment; you are not intentionally killing them. This is the first difference with assisted dying.
The second difference, I would say, is that you are absolutely right that we do make those decisions with patients—with their families, if they wish—but in a multi-professional team. I would almost never make those decisions as an individual doctor without the support of my colleagues, for several reasons. First, as I have said already, that makes for much better decisions—they are safer and more robust. Secondly, the moral distress associated with these decisions is much less if you share them. That is also a worry for me—what happens to the moral distress of the co-ordinating doctor and the other assessing doctor? They are carrying a lot of moral distress. My understanding is that a very small percentage of doctors will want to engage with this—maybe 1% or 2% of all doctors will want to be in those assessing positions. They are carrying a lot of that distress because they will be doing a lot of assessing.
Q
Dr Clarke: I think that is not quite right, and certainly not what I intended to convey. There are rules. There are very clear legal and professional rules and guidance and protocols around how to have these conversations. However, in practice, the quality of the conversations is contingent on the confidence, expertise, training and background of the individual clinicians having the conversations. There can be a great deal of inter-doctor variability in how conversations are conducted. In terms of addressing that, I would suggest that in an assisted dying scenario the crucial thing is to make the guidance and training as robust as it possibly can be to reduce the inter-practitioner variability.
Q
Dr Clarke: No, of course not.
The Chair
Order. We have half an hour left. Nine people have asked questions and there are eight people left who want to. If we want to get through the questions by 3.15 pm, people will have to be self-disciplined when they ask their questions.
To the panel, forgive me, but we need answers in as reasonable a time as possible given the circumstances. Dr Clarke, if you wish to answer the last point, feel free.
Dr Clarke: Of course we want as much autonomy for as many patients as possible. The issue is around safeguards. If, for instance, you say to a vulnerable patient who has just been told they have a diagnosis of terminal cancer, “Have you thought about assisted dying?”, I would suggest that stating it broadly like that is a form of pressure and that you are potentially unintentionally coercing that patient. The very act of raising assisted dying in that way will make that vulnerable patient think, “God, is this doctor telling me that my life is not worth living any more?” Autonomy is much more subtle and complicated than we assume from outside.
Dr Tidball
I, too, support my hon. Friend the Member for Spen Valley and in particular I want to highlight the helpful addition of Kamran Mallick of Disability Rights UK. That augments an already comprehensive list of expert disabled people, which includes: Professor Tom Shakespeare, an internationally renowned disability rights academic; Dr Miro Griffiths, a Disability Studies scholar at the University of Leeds; and Chelsea Roff, the founder of Eat Breathe Thrive. On the panel, we will also have a representative of the Equality and Human Rights Commission, who will be able to give a good overview on the intersection between protected characteristics. Finally, there will be Jon Sparkes, the representative of Mencap.
I am really pleased that my hon. Friend has worked so hard to ensure that the voices of disabled people are integrated across a number of the panels that we will see over the next two days, and the addition in her amendment is really helpful. I commend her for it.
I, too, support the amendment proposed by the hon. Member for Spen Valley, and in particular the addition of Jane Monckton-Smith. I have read her book; it is definitely worth a read and is pretty alarming. I will address why I do not think the Committee should support the amendment to the amendment tabled to add other witnesses.
Jane Monckton-Smith has done a huge amount of research in the area, and as well as being an academic who specialises in coercion and femicide—and the impact that coercion has on femicide—she is a former police officer, so has significant frontline experience. As part of her research she will have spoken with and interacted with many of the groups that the hon. Member for Bradford West is proposing to include—although maybe not specifically. I would prefer it if we stuck with the list that the hon. Member for Spen Valley has put forward, and not add the additional witnesses proposed.
Lewis Atkinson
I agree with my hon. Friend the Member for Spen Valley. Having agreed to extend the time on Thursday to hear devolution issues and from the Royal College of General Practitioners and the Royal College of Psychiatrists, by adding two further witnesses, the amendment to the amendment would reduce the time available on those options. In an ideal world we would like to hear from all sorts of people. The option of written evidence is available. We have got other evidence, and I want to ensure that Thursday’s session is focused on the proposals that my hon. Friend has made.
(1 year, 6 months ago)
Public Bill CommitteesQ
Dr Cox: I and my colleagues have concerns about the safeguards in the Bill. It is not just the capacity assessment; we also acknowledge that prognosis is incredibly difficult to assess accurately. I would say that you cannot always identify coercion. You can identify it when it is very obvious and extreme, but when it is very subtle, we cannot always identify it. After the event, there is nobody to tell us about coercion, so it is very difficult to monitor.
The other thing that concerns me is that we are putting all these assessments on the shoulders of two doctors individually, followed up by a High Court judge. In any other clinical practice, when we are making very serious decisions, we know that shared decisions are much better quality, much more robust and much safer. In clinical practice, we make all these decisions in multi-professional teams. I would never make these decisions independently of my team, because the perspective they bring can help me to understand things that I am not seeing.
The thing that I am really concerned about is how it is possible for these doctors, even with training, to have a good understanding of all illnesses in order that they can identify prognosis—neurological, cancer and every other. How is it possible for them to really understand capacity when capacity is not an absolute; it does change and it is very complex to assess? How is it possible for them to see all cases of coercion, which can be invisible?
In addition to that, are those doctors going to be looking out for opportunities to refer to palliative care when they see somebody who has suffering that could be addressed and may change their mind? Are they looking out for untreated depression? We know that treatment of depression can result in people changing their minds about wanting to die. It is a lot to ask these individual doctors to do, and that really concerns me.
Q
Dr Cox: There are two differences that I would identify. The examples you give are of somebody who may be naturally dying and is being kept alive, so the difference is that you are withdrawing a treatment; you are not intentionally killing them. This is the first difference with assisted dying.
The second difference, I would say, is that you are absolutely right that we do make those decisions with patients—with their families, if they wish—but in a multi-professional team. I would almost never make those decisions as an individual doctor without the support of my colleagues, for several reasons. First, as I have said already, that makes for much better decisions—they are safer and more robust. Secondly, the moral distress associated with these decisions is much less if you share them. That is also a worry for me—what happens to the moral distress of the co-ordinating doctor and the other assessing doctor? They are carrying a lot of moral distress. My understanding is that a very small percentage of doctors will want to engage with this—maybe 1% or 2% of all doctors will want to be in those assessing positions. They are carrying a lot of that distress because they will be doing a lot of assessing.
Q
Dr Clarke: I think that is not quite right, and certainly not what I intended to convey. There are rules. There are very clear legal and professional rules and guidance and protocols around how to have these conversations. However, in practice, the quality of the conversations is contingent on the confidence, expertise, training and background of the individual clinicians having the conversations. There can be a great deal of inter-doctor variability in how conversations are conducted. In terms of addressing that, I would suggest that in an assisted dying scenario the crucial thing is to make the guidance and training as robust as it possibly can be to reduce the inter-practitioner variability.
Q
Dr Clarke: No, of course not.
The Chair
Order. We have half an hour left. Nine people have asked questions and there are eight people left who want to. If we want to get through the questions by 3.15 pm, people will have to be self-disciplined when they ask their questions.
To the panel, forgive me, but we need answers in as reasonable a time as possible given the circumstances. Dr Clarke, if you wish to answer the last point, feel free.
Dr Clarke: Of course we want as much autonomy for as many patients as possible. The issue is around safeguards. If, for instance, you say to a vulnerable patient who has just been told they have a diagnosis of terminal cancer, “Have you thought about assisted dying?”, I would suggest that stating it broadly like that is a form of pressure and that you are potentially unintentionally coercing that patient. The very act of raising assisted dying in that way will make that vulnerable patient think, “God, is this doctor telling me that my life is not worth living any more?” Autonomy is much more subtle and complicated than we assume from outside.
Dr Tidball
I, too, support my hon. Friend the Member for Spen Valley and in particular I want to highlight the helpful addition of Kamran Mallick of Disability Rights UK. That augments an already comprehensive list of expert disabled people, which includes: Professor Tom Shakespeare, an internationally renowned disability rights academic; Dr Miro Griffiths, a Disability Studies scholar at the University of Leeds; and Chelsea Roff, the founder of Eat Breathe Thrive. On the panel, we will also have a representative of the Equality and Human Rights Commission, who will be able to give a good overview on the intersection between protected characteristics. Finally, there will be Jon Sparkes, the representative of Mencap.
I am really pleased that my hon. Friend has worked so hard to ensure that the voices of disabled people are integrated across a number of the panels that we will see over the next two days, and the addition in her amendment is really helpful. I commend her for it.
I, too, support the amendment proposed by the hon. Member for Spen Valley, and in particular the addition of Jane Monckton-Smith. I have read her book; it is definitely worth a read and is pretty alarming. I will address why I do not think the Committee should support the amendment to the amendment tabled to add other witnesses.
Jane Monckton-Smith has done a huge amount of research in the area, and as well as being an academic who specialises in coercion and femicide—and the impact that coercion has on femicide—she is a former police officer, so has significant frontline experience. As part of her research she will have spoken with and interacted with many of the groups that the hon. Member for Bradford West is proposing to include—although maybe not specifically. I would prefer it if we stuck with the list that the hon. Member for Spen Valley has put forward, and not add the additional witnesses proposed.
Lewis Atkinson
I agree with my hon. Friend the Member for Spen Valley. Having agreed to extend the time on Thursday to hear devolution issues and from the Royal College of General Practitioners and the Royal College of Psychiatrists, by adding two further witnesses, the amendment to the amendment would reduce the time available on those options. In an ideal world we would like to hear from all sorts of people. The option of written evidence is available. We have got other evidence, and I want to ensure that Thursday’s session is focused on the proposals that my hon. Friend has made.
(1 year, 6 months ago)
Public Bill Committees
Sean Woodcock (Banbury) (Lab)
Q
Dr Green: You are right: all medical staff have safeguarding training, and of course patients make important decisions often with the influence and help of their family members. Usually this influence is helpful, and it almost always comes from a position of love. The point at which such influence becomes coercion is difficult to find out, but my experience is that it is rare. I would recommend that you look at what has happened in other parts of the world that have more experience with this, because they have it as part of their training modules. Certainly, we would expect capacity and coercion training to be part of the specialised training that doctors who opt in would receive. I anticipate that the general safeguarding training should be sufficient for other doctors, who would obviously only be involved at that very early stage.
Q
As I understand it, the General Medical Council already has guidance on dealing with assisted dying if it is raised by a patient, and how doctors should handle that. How easy would it be to translate that guidance—the process struck me as something that does not hinder but also does not enable—into something more informative?
Mark Swindells: It is important to note that our guidance on assisted dying is framed in the current law, so it guides doctors to explain that it is not lawful for them to assist their patient to die. It talks about the importance of explaining other available treatment options, including palliative care; making sure that the patient’s needs are met; and dealing with any other safeguarding matters. Oure guidance does follow the law, so if the law were to change, we would obviously attend to that. It is not framed quite as you are suggesting, so I do not think that would lift and shift into what the guidance would need to be for doctors if this were to pass.
Dr Green: I do not have any experience with what you are describing, but it would certainly make sense to look at best practice in other areas.
Q
Dr Green: As a general principle, I do not believe that unnecessary barriers should be put in the way of communication. This is such an important area for patients that it is vital that they form a good, trusting relationship with their key medical adviser, who would usually be a doctor. I also have to say that at the end of life, we depend a lot on our specialist nurses— Macmillan or Marie Curie nurses—and it might well be that they are the person whom the patient trusts most. Please do not put barriers in the way of understanding.
Q
Dr Green: Indeed. I believe that in New Zealand—and I think in the state of Victoria, but I would need to check that—there have been official reviews that have identified those concerns, and they are looking to review the legislation.
Q
I would like a quick clarification from Dr Green. In terms of the survey, my understanding is that the British Medical Association’s official position is to be neutral. The majority in favour of neutrality—moving away from an opposed position—were junior doctors and those not working with the elderly and the dying, whereas the great majority of doctors who work in palliative care and work with dying people remain firmly opposed to a change in the law. Is that your understanding?
Dr Green: There were some variations between specialities; that is true, but within all specialities, there was a wide variety of opinion. It is that wide variety of opinion that the BMA has based its policy on.
Q
Mark Swindells: I do not believe that we use the word “refer”, but I will double-check. The word “referral”—this is part of the BMA’s position—has a particular meaning in the world of medicine. We talk about the importance, from a patient perspective, of not being left with nowhere to go, so there is some professional responsibility on the doctor to guide.
Q
Dr Green: We would expect that to be done with sensitivity.
The Chair
Order. We have come to an end, but you may complete your sentence, Dr Green.
Dr Green: That was my complete sentence.
Sojan Joseph
Q
Professor Ranger: Yes, we would want to see more support and protection for nurses. Of course, in the exploring of assisted dying legislation in Scotland, the second clinical decision maker is a nurse—so it a doctor and a nurse, whereas in England and Wales we are looking at two medically qualified practitioners. We absolutely want to make sure that the skills and support is there for nursing staff, and the ability—as I heard our medical colleagues saying—to not be involved in assisted dying absolutely has to be supported. It cannot be an expectation of the role; it has to be something you choose to proactively take part in as a conscious decision. It cannot ever be just an expectation of a nurse. We are absolutely adamant about that. The Bill cannot just support the needs of medical staff—nursing absolutely has to be included within that, both in skills and support.
Q
Professor Ranger: It is difficult. If I am honest, we have probably not explored that enough within our thinking as a college. We know what we would not want to see, which is a situation where there is an expectation that it becomes part of a pathway. It has got to be something you actively seek and opt into. I think how that is administered probably requires more thought, if I am honest, but I would not want to see it becoming an expectation of a pathway, because then the pressure on the individual may change. That is something we need to safeguard against.
I am worried that we should not make it so bureaucratic for the individual that it becomes impossible to have their autonomy respected, but how that happens is something that needs further exploration. We would fully support making it as clear and unbureaucratic for the person as humanly possible. But we would not want to see it as a sort of pathway within our current setting, because there could then be a sense that this is something that is externally influenced rather than being something that someone actively seeks for their autonomy.
Q
Professor Ranger: It is difficult, but in my experience there are ways to try and get people palliative care, whether that is, as was said earlier, via other organisations outside the NHS and within hospice care. There are ways through the current routes to get people the care that they need.
(1 year, 7 months ago)
Public Bill CommitteesI was going to make exactly the same point. I think my hon. Friend the Member for East Wiltshire has fundamentally misunderstood what is happening. He referred to there being a discussion through the usual channels. What the hon. Member for Spen Valley has proposed is that we have that discussion now—she said informally—because we have not had the chance to do so before, and that we then return. Then my hon. Friend is free to say whatever he likes about whatever witnesses and table his own amendments as he wishes. There is no intention to conceal anything. If I might be so bold, I think he has misunderstood the process.
Just following on from the speech of the right hon. Member for North West Hampshire, I would not read the situation as a misunderstanding by the hon. Member for East Wiltshire. I read the motion to sit in private not as an informal discussion, but as a very formal discussion. I am grateful to the lead Member for the Bill, my hon. Friend the Member for Spen Valley, who before this meeting explained to me what has now been explained here—about the issue of people’s availability, privacy and so on. But I do not suspect that we will be going into those details. If people are not available, we do not have to discuss why they are not. We do not have to discuss their personal lives. I am not sure that that is a good enough reason not to have a discussion in public. I trust colleagues across the Committee to be collegiate enough and big enough to refer to witnesses with respect. I think that is a given, considering the way in which we have conducted the Bill so far. I therefore do not support the motion to sit private.
The Chair
The hon. Lady may deal with amendment (i) and with the hon. Gentleman’s proposal. At this stage, let me simply call Kit Malthouse to speak to amendment (b).
I rise to speak to amendment (b) and to the other amendments tabled by the hon. Member for Bradford West. As we discussed in private, I am concerned that the promoter of the Bill, the hon. Member for Spen Valley, has been through an extensive period of trying to collate everybody’s recommendations for the Bill and reach a list that is both manageable within the timeframe and a compromise for all of us on what we would like to see.
The odd adjustment here and there is fine, but we ought to bear in mind that in any one session we need to have sufficient time for people to speak. We have to be careful not to double up because we may or may not think that a particular witness might propose a view with which we are sympathetic, when we already have people who are covering the same subject. On amendment (b), for example, all psychiatrists are regulated by the General Medical Council, as I am sure the hon. Member for Bradford West knows, so effectively the royal college is a doubling up of expertise, which is not necessarily in the interests of time. Similarly, in amendment (c), the hon. Lady is proposing a physician from Canada—
I will just finish, if I may. Our Bill is built on a very different legal framework from Canada’s. Drawing legislative parallels between the two seems like a cul-de-sac, not least because, as the hon. Lady will know, the legal framework in Canada is dictated by the charter of rights and freedoms, effectively a constitution, which has been used there to widen the scope of the law. Canada started from a very different place as well, so I am not totally convinced.
What the hon. Member for Spen Valley has tried to do with the list is to find overseas territories that are analogous to our own and have adopted a model similar to ours. We are therefore trying to learn lessons from the process of debate and legislative procedure that they went through—either to learn from them or to learn from their mistakes. For example, knocking out the Member of Parliament from Australia would be a mistake, not least because Australia has been through a number of iterations with its law. Most of Australia has a bar on doctor initiation of the conversation. The medical profession think that that is a big negative in Australia, as I understand it, so I would like to understand why, politically and in legislation, it was felt that that was needed or helpful, and why it was imposed.
On the other amendments, the hon. Member for Bradford West is making a value judgment about comparative expertise between Amanda Ward and whoever she wants to propose instead—Philip Murray. I do not know why she is making that value judgment, but as far as I can see, the names were properly submitted in the process. The hon. Lady obviously had the chance to submit names during the process. For better or worse, as she may see fit, the hon. Member for Spen Valley has come up with a list that is a compromise. That is not to say that the hon. Member for Bradford West cannot arrange briefings with any of these experts outside the formal process, for Members to attend should they so wish, or that she cannot seek advice from them during the process of the Bill.
My primary concern about the amendments is that we are opening up a whole area of debate where we could all have gone with our suggestions. I would rather stick with the list that we have, because I fear that the hon. Member for Bradford West is doubling up and making value judgments about expertise that are not necessarily warranted.
All the names that the hon. Member for Bradford West has suggested were indeed submitted, I believe, to the hon. Member for Spen Valley ahead of the deadline that she put to us at the end of last month.
(1 year, 8 months ago)
Commons ChamberWhen I was a child, my parents shielded me from death. Centuries of art, literature and religion taught me that death was something noble or even slightly romantic. When I became an adult, I learnt pretty quickly that that was not the case. For far too many, it is anything but and certainly not noble. The deathbed for far too many is a place of misery, torture and degradation, a reign of blood and vomit and tears. I see no compassion and beauty in that, only profound human suffering. In 10 years of campaigning on this issue, I have spent many, many hours with dying and bereaved people, which has, time and again, reinforced my view.
I am a co-sponsor of the Bill and I am the co-chair of the all-party parliamentary group for choice at the end of life. I could give a speech to promote the Bill, but my hon. Friend—and I do call her a friend—the Member for Spen Valley (Kim Leadbeater) has done that remarkably well. In my speech I want to address some of the common issues that have been raised, and that will no doubt be raised during the debate, with which I struggle.
First, we will no doubt hear an awful lot about the overseas experience. I am married to a Canadian, and I can tell the House that they love their children just as much as we do. The idea that the Canadians, Australians, New Zealanders, Spanish and Austrians care little for their relatives, or indeed for the wider society in which they live, is frankly offensive. We should not pretend that somehow we are special or different. They have thought as profoundly on these issues as we have over the past 10 years. We can learn from them, and design a system for our own sensibilities and culture, as they have done. They all have different laws on abortion, some of which we would not pass in this House, but that does not mean we should not have abortion laws here. We are a 1,000-year-old democracy, and we should be able to design legislation that deals with this issue for ourselves.
The second issue that has been raised with which I have struggled regards the impact on the NHS and on judges. People are already dying; they are already in the national health service and entitled to care. Even if we think there will be an impact, are people seriously telling me that my death, my agony, is too much for the NHS to have time for, or too much hassle? It is even claimed that such matters would overload the judges—that I should drown in my own faecal vomit because it is too much hassle for the judges to deal with. We send things from this House to the NHS and to judges all the time. Is anyone suggesting that we should not create the new offence of spiking, which has come through this week, because judges are overworked? Of course not. They will cope as they have done with all sorts of things that we have sent from this House over the years, and we should not countenance the idea that some logistical problem will get in the way of our giving a good death to our fellow citizens.
I also want to address directly those Members who are considering voting against the Bill, to ensure that they are clear in their minds that a vote against the Bill is not a passive act. There are two states of being on offer today. I have to break some news to Members: whatever happens to the Bill today, people with a terminal illness will still take their lives. If the Bill falls today, we will be consigning those people to taking their lives in brutal, violent ways, as they are at the moment, and will see increasing numbers of our fellow citizens making the trip to Switzerland if they can afford it. We know that between 600 and 700 people a year are killing themselves in violent ways—shooting themselves, throwing themselves in front of trains, taking overdoses in lonely, horrible circumstances. As I said, many are going to Switzerland, but more than that are lying in hospital—I guarantee that there will be somebody over the river in St Thomas’ hospital now who is refusing treatment and starving themselves to death because they cannot face what is in front of them.
Sam Rushworth (Bishop Auckland) (Lab)
Does the right hon. Gentleman agree that we had a choice today? We have come here to debate assisted dying, but we could have come here to build cross-party consensus on how finally, once and for all, to fix palliative care in this country. We could have come to look at a funding consensus, as that does need to be cross-party. I agree with his point that voting no is also a choice, but what follows from that should be a cross-party consensus on how we fix palliative care.
I agree with the hon. Gentleman, and what a surprise it is that the conversation about palliative care has started. We were not having that conversation before this Bill came forward. The evidence from the Health and Care Committee, published only in February this year, shows that palliative care and assisted dying go hand in hand.
I will not give way.
Improvements also go hand in hand; medics from across the world told us that the two things are complementary. In Australia I discussed this issue with a palliative care doctor who was against the introduction of assisted dying when they were contemplating it. She now finds it an invaluable tool, and she embraces it as something that her patients want and need. My concern is that if the Bill is turned down, as it was in 2015, the conversation about palliative care will wither, as it has done for the past 10 years.
I want to share a story that has particularly affected me. Mark Crampton was a former police chief inspector who was suffering from chronic obstructive pulmonary disease. His COPD became too much for him, so he informed his family that he was going to take his own life. He took his oxygen tank and mask and late one night went out and sat on a railway embankment. He wanted a death that was instant and quick, and that he could rely on. He waited until 2 in the morning—heartbreakingly, he had worked out when the last train was going, so he would minimise disruption to the public—and then took his life in lonely circumstances in the middle of the night. By not passing the Bill, we would deny to Mark supervision, conversation, access to doctors, periods of reflection, advice. Even if he had been through all that and decided it was still too much, the Bill would give him a much better end than he actually achieved. Members should be clear, as I say, that whatever happens to the Bill, terminal people will still take their lives.
I have to say to the hon. Member for Brent West (Barry Gardiner), who says that hundreds of people dying in agony every year is a price worth paying for the good of society, that I find that an appalling prospect. A society that looks away from these people —like those in the Public Gallery who are living in terrible fear of what will face them, or who have watched their families die in fear—and says that that is okay for the good of the whole is a terrible, terrible prospect. We have a duty to assist them, as other countries around the world have done, and to find a way to make them comfortable in the end.
I will not.
Finally, I want to talk briefly about rights. We hear a lot about rights in this debate—quite rightly. We hear about the rights and fears of the disabled community, who are specifically excluded from the Bill; we hear a lot about the rights and fears of the elderly, who are also specifically excluded from the Bill; we are even hearing about the rights of doctors, who are allowed to conscientiously object to participating in this process, if they wish. When are we going to have the conversation about the rights of the dying? Where do we put them in the ranking of rights, as they face their end? When do we grant them the autonomy and choice for which so many of them have campaigned over the years? Surely, as they come towards the end of their life, their rights have to be at the forefront of our mind. The last, best gift we can give them is control over the disease that is destroying them.
If we do not pass the Bill today, we are cornering all those people; we are trapping them, with the law, in their disease, and consigning them to an end of torture and degradation that they do not wish to go through. As I said before, we are a 1,000-year old democracy. It is not beyond us to design legislation that will give those people what they want, while protecting those whom we feel need to be protected. Like my right hon. Friend the Member for Sutton Coldfield (Mr Mitchell), I want this choice for my constituents, but profoundly I want it for myself and for the people in the Public Gallery who have worked so hard over the past decade to get us to change our minds.
I ask Members please to be clear that whatever happens today, terminal people will still take their own lives—all we are deciding today is how.
Several hon. Members rose—
This Second Reading debate on the Bill sponsored by my hon. Friend the Member for Spen Valley (Kim Leadbeater) provides the House and the country with an opportunity to discuss this complex and sensitive issue. I make it clear that I stand at the Dispatch Box today not as the MP for Pontypridd representing the views of my constituents, although I thank each and every one of them who took the time to contact me with their considered opinions. I stand here today as the Government Minister responsible for the criminal law on this issue in England and Wales, contained in the Suicide Act 1961.
As the Government remain neutral on this topic of conscience, and out of respect for my ministerial colleagues who are not able to outline their views in today’s debate, I will not be sharing my personal opinions on this matter. I will, however, be taking part in the vote. With all that in mind, I will keep my response brief and not take any interventions. The Government are of the view that any change to the law in this area is an issue of conscience for individual parliamentarians. It is rightly, in our view, a matter for Parliament rather than the Government to decide. Accordingly, the Government Benches will have a free vote should the views of the House be tested today.
If the will of Parliament is that the law in this area should change, the Government will of course respect their duty to the statute book and ensure that any Bill is effective and its provisions can be enforced. I thank my hon. Friend the Member for Spen Valley for bringing this important national conversation to the fore and for conducting her campaign with respect and integrity. I pay tribute to the campaigners on both sides of the debate, including Dame Esther Rantzen, Liz Carr, Nathaniel Dye and Baroness Grey-Thompson. They have all used their voices to advocate for what they believe and have contributed significantly to the important national conversation around death.
Regardless of views, the one thing we have in common is that we will all experience death at some point. Death is a topic that we do not tend to talk about very much, but these discussions have undoubtedly enabled families up and down the country to talk openly about their wishes and how they feel about their own death. That powerful honesty is a tribute to how Members of this House and campaigners have conducted themselves throughout, and I thank them for informing today’s debate.
claimed to move the closure (Standing Order No. 36).
Question agreed to.
Question put accordingly, That the Bill be now read a Second time.
(1 year, 11 months ago)
Commons ChamberOn a point of order, Madam Deputy Speaker. On 25 July, the main estimates were laid before the House and passed without debate or vote. On 29 July, the Chancellor came to the House and made a statement about the public finances, and laid a further document called “Fixing the Foundations”, which showed a wildly different picture of the public finances from that which had been presented to us just one working day before.
Naturally, that raised concerns in the House. I and a number of Members questioned the Chancellor of Exchequer about it at the time. The fact that she was evasive in the debate and, frankly, look rattled raised further concerns. Today, a letter from the Cabinet Secretary to my right hon. Friend the shadow Chancellor has been leaked. It explains that officials knew at the time that the estimates laid by the Chancellor were incorrect. I also have a letter from the Office for Budget Responsibility in response to a freedom of information request that I made prior to the recess. It explains that the OBR was shown the contents of that document two days before the estimates were laid before the House. Indeed, the OBR was given the “Fixing the Foundations” document in order to fact-check it on the day that the estimates were laid before the House of Commons.
That raises a number of issues for the House, but the one that I am most concerned about is whether the Chancellor of the Exchequer has knowingly misled the House of Commons on the state of the public finances and her knowledge at the time. Knowingly misleading the House is a breach of the ministerial code, and I want your guidance, Madam Deputy Speaker, on what the appropriate course of action might be for the House. If we cannot rely on the financial information laid before us, but trust that it is accurate and wave it through, we are in a very difficult place indeed.
I have notified the Chancellor of the Exchequer of my intention to raise this point of order. Obviously, once an independent adviser on the ministerial code is appointed, I can make representations to them, but in the meantime we are faced with a situation where either the estimates or the “Fixing the Foundations” document was knowingly wrong. In either case, the House may have been significantly misled, and I would be interested to hear your guidance on what we can do about it, Madam Deputy Speaker.
I thank the right hon. Gentleman for his point of order and for advance notice of it. He indicated that he has informed the Chancellor of his intention to make the point of order, which of course is the correct thing to do. There are two separate points here. The first is one of privilege. He should write to the Speaker to make the point that he is concerned that the Chancellor may have misled the House. The second is about the accuracy of the estimates. That is not a matter for the Speaker, but it may be something that the right hon. Gentleman chooses to raise with the Chair of the Public Accounts Committee once they are elected next week.