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

The Committee consisted of the following Members:

Chairs: † Peter Dowd, Clive Efford, Sir Roger Gale, Carolyn Harris, Esther McVey

† Abbott, Jack (Ipswich) (Lab/Co-op)

† Atkinson, Lewis (Sunderland Central) (Lab)

Campbell, Juliet (Broxtowe) (Lab)

† Charalambous, Bambos (Southgate and Wood Green) (Lab)

† Francis, Daniel (Bexleyheath and Crayford) (Lab)

† Gordon, Tom (Harrogate and Knaresborough) (LD)

† Green, Sarah (Chesham and Amersham) (LD)

† Hopkins, Rachel (Luton South and South Bedfordshire) (Lab)

† Joseph, Sojan (Ashford) (Lab)

† Kinnock, Stephen (Minister for Care)

† Kruger, Danny (East Wiltshire) (Con)

† Leadbeater, Kim (Spen Valley) (Lab)

† Malthouse, Kit (North West Hampshire) (Con)

† Olney, Sarah (Richmond Park) (LD)

† Opher, Dr Simon (Stroud) (Lab)

† Paul, Rebecca (Reigate) (Con)

† Richards, Jake (Rother Valley) (Lab)

† Sackman, Sarah (Minister of State, Ministry of Justice)

† Saville Roberts, Liz (Dwyfor Meirionnydd) (PC)

† Shah, Naz (Bradford West) (Lab)

Shastri-Hurst, Dr Neil (Solihull West and Shirley) (Con)

† Tidball, Dr Marie (Penistone and Stocksbridge) (Lab)

† Woodcock, Sean (Banbury) (Lab)

Lynn Gardner, Lucinda Maer, Jonathan Whiffing, Committee Clerks

† attended the Committee

Richard Robinson, chief executive officer, Hourglass

Dr Alexandra Mullock, senior lecturer in medical law, University of Manchester, and expert legal adviser to the Government of Jersey Citizen’s Jury on Assisted Dying in 2021

Professor Allan House, emeritus professor of liaison psychiatry, University of Leeds

Professor Aneez Esmail, professor of general practice, University of Manchester

Lord Jonathan Sumption, former Supreme Court judge, barrister, historian and author

Baroness Kishwer Falkner, chairwoman, Equality and Human Rights Commission

Dr Lewis Graham, Christ’s College, Cambridge

Fazilet Hadi, head of policy, Disability Rights UK

Toby Porter, chief executive officer, Hospice UK

Dr Jamilla Hussain, clinical academic and consultant in palliative medicine, Bradford Teaching Hospitals NHS Foundation Trust, senior research fellow, Bradford Institute for Health Research, and honorary senior research fellow, Wolfson Palliative Care Research Centre, Hull York Medical School

Dr Jane Neerkin, consultant physician in palliative medicine, University College London Hospitals NHS Foundation Trust and the National Hospital for Neurology and Neurosurgery

Sam Royston, executive director of policy and research, Marie Curie

Public Bill Committee

[Peter Dowd in the Chair]

Terminally Ill Adults (End of Life) Bill

Examination of Witnesses

14:00:00

We will now hear oral evidence from Dr Alexandra Mullock and Professor Aneez Esmail, both from the University of Manchester; Professor Allan House, from the University of Leeds; and Richard Robinson, CEO of Hourglass. We have until 3 pm for this session. Will the witnesses please introduce themselves for the record? Dr Mullock: Thank you very much for inviting me to give evidence today. I am a senior lecturer in medical law at the University of Manchester. My involvement in this issue came as a result of my academic work, which led me to be invited to be involved in the Government of Jersey’s citizens’ jury back in 2020. I was also involved in the ethical review of the Jersey proposal. Subsequently, I gave evidence to the Health and Social Care Committee on assisted dying. Last year, I was involved in the Nuffield Council of Bioethics’ citizens’ jury. I am supportive of the Bill; I think it provides a rigorous framework. I have given written evidence as well, making some suggestions for refinement. Professor Esmail: My name is Aneez Esmail. I am an emeritus professor of general practice at the University of Manchester. I am still a practising GP; I worked as a GP and professor of general practice in the city of Manchester for over 30 years. I am a trustee of Dignity in Dying and a council member of the Royal College of General Practitioners, which is currently consulting its members on their views about this. I am a non-executive director of the North West Ambulance Service and a medical tribunal member for the General Medical Council. My interest in assisted dying arises from my own research experience. I am an expert in patient safety and primary care, and I was the medical adviser to the Shipman inquiry between 2000 and 2006. Richard Robinson: Good afternoon. I am Richard Robinson, chief exec of Hourglass. For 30 years, we have been the only UK-wide charity focused on older victim survivors of abuse and neglect. Our interest in this area comes from our work to pursue a safer ageing society for older people by 2050. We deal with around 75,000 issues to do with abuse in later life every year, and we are very keen to ensure that the Bill works to safeguard older people and to ensure that people can make independent decisions. Professor House: Good afternoon. I am Allan House, emeritus professor of liaison psychiatry at the University of Leeds. I worked for 15 years as an NHS consultant in liaison psychiatry in one of Leeds’s big general hospitals. Thereafter, I became a full-time professor in the medical school in Leeds. The “liaison” in liaison psychiatry refers to links between mental health and physical health services. A big part of my clinical and research interest has been in the psychological response to severe physical illness and related matters. The second interest is in suicide and suicidal thoughts. My interest in this Bill is in the safety of vulnerable people, particularly in relation to aspects of medical assessment and oversight and safety monitoring.

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.

Q196 Thank you all for coming. Clause 26 will create a new offence of coercion. In your view, is that offence correctly drawn? Is 14 years long enough as a deterrent? 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 We have heard from earlier witnesses, particularly from other jurisdictions, that training is the key. Is it therefore your view that in guidelines, for example, specific training in this area could be effective? 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?

If you are quick.

Q Professor House, in Oregon, which partly inspired this Bill, I understand that there is an expectation—in fact, a requirement—that there be a psychological assessment if the assessing doctor thinks that a mental health condition, depression or other issue might be present. Do you think that that would be appropriate? Do you think that it would be a helpful safeguard to insist on a psychological evaluation? Professor House: I do, although I do not think it is enough. Perhaps I could say a little about assessment more generally, and where that fits in. With my background, I am familiar with meeting people who have a severe and life-limiting physical illness and say that they want to end their life. In the assessment, the starting point is trying to understand why. That can mean circumstances—external factors. Some of those have been aired during the public debate about all this. They include things like limitation of available resources, symptom control, poor housing and financial insecurity. There is also the question of the baleful influence of third parties. There are then the internal factors that we could call something like state of mind—feelings of personal worthlessness or burdensomeness, loneliness and isolation. When we put those two together, that is what people mean when they talk about psychosocial assessment: “psycho”, the inner state, and “social”, the external circumstances. Part of it is psychological. These ideas of burdensomeness and worthlessness, for example, come very often with low mood—indeed, chronic physical pain is often exacerbated by the presence of low mood—so you would certainly wish to have a psychological component to the assessment. It goes rather beyond identifying and diagnosing mental illness, as I hope is clear from what I have said about the sorts of psychological factors you would be looking for. Does that answer your question?

Yes, thank you. So we need it anyway: in all cases, there should be a psychological assessment as part of the process. Professor House: As part of the assessment, yes.

Q Mr Robinson, I want to come back to the question of coercion. We heard from advocates of assisted dying laws elsewhere that there is hardly any evidence of cases of coercion in this service overseas, and yet you are reporting—and we absolutely believe you, because we see evidence of it—that there is a chronic problem of elder abuse in our country. Presumably there is in every country. How do we square this? Is it that elder abuse does not apply in the context of assisted suicide in other jurisdictions, or is it just not being picked up? Richard Robinson: I think there is a fundamental misunderstanding around what the abuse of older people is, and that has been borne out by a number of research papers that we have written, some working with YouGov, for example. Likewise, as I said, it is also a question of understanding what coercion is and getting the older person to open up, to help them to understand and to trust the person they are talking to. We fully believe that there is nowhere near enough training and understanding across the medical profession and the judiciary around understanding the signs of abuse or coercion. Even though we completely welcome the new law on coercive control in the Domestic Abuse Act 2021, we have not seen a significant change. If anything, we as a charity believe that there is an epidemic of abuse against older people at the moment. Some of it is due to the economic climate that we are in, with people just wanting to have their inheritance now, and some of it is due to the fact that older people feel like a burden. You mentioned Oregon: of course, there is also the statistic that 48% of people who went down the assisted dying route in Oregon cited being a burden as part of their decision-making process. I think that the abuse of older people in this country is vastly underplayed. I have mentioned the 75,000 impacts that we see and the 2.6 million people affected by it, but we have to fight for headlines and for understanding in every sector of society. It is seen as a minority issue, and it is really not. It is not a niche issue, and it is growing. That does not mean that we as a charity are against the assisted dying Bill. If anything, we are pushing towards a safer ageing society. We would like to see a safer ageing society by 2050, and we believe that older people as a demographic should have an independent choice of what they want to do. That fits within our safer ageing society viewpoint. However, safeguarding is at the very heart of this. Until society can take the safeguarding of older people more seriously and look at training around abuse in the same way as with other forms of abuse and neglect, there is a much broader question to be asked.

Q Professor House, concerns have been expressed in written evidence that an assisted dying Bill of this sort is incompatible with wider policy around reducing suicide or suicide prevention measures. Do you think that it is possible to implement effective policies to reduce suicide rates, while having an assisted dying Bill at the same time? Professor House: It is a challenging question, isn’t it? A lot of it is based on interpretation of far-from-definitive evidence. A starter would be to observe that we would have to change our national suicide prevention strategy, because at the moment it includes identifying suicidal thoughts in people with severe physical illness as something that merits intervention, and the intervention is not an intervention to help people proceed to suicide. So the answer to your question, to some extent, is “Yes, it is going to change our approach to suicide prevention.” The wider question is whether it will change both the medical approach and society’s approach to suicide prevention in general if we start saying, “We don’t like suicide and we want to do something about it, except in some groups of people.” You may know that Professor Louis Appleby in Manchester, who leads the national confidential inquiry into suicide, is concerned about that. The best I can say on the international evidence is that there is no evidence that introducing this sort of legislation reduces what we might call unassisted suicides.

Q There is no evidence that it reduces it, so it continues at the same rate: it does not increase, and it does not reduce. Is that what you are saying? Professor House: Well, it increases, but there are so many factors. I will give you one example. Oregon has been widely cited as a model for this sort of thing, although people have been a bit more uncertain in recent times. At the time that Lord Falconer introduced his Bill in the Lords in 2014, Oregon was cited as a place where levels had stayed much the same—not of suicide, but of people receiving assisted dying. In the decade since then, the number of people going through the assisted dying programme has gone up 500%, and the number of suicides has gone up 20%.

Q Professor House, you have said that people applying for assisted dying may be in a state of vulnerability. What is vulnerability and how can the Bill be amended to make sure that vulnerable people do not inappropriately choose assisted dying? Professor House: Vulnerability is not just an inherent characteristic of individuals. It is the presence of these external factors, circumstances, and internal factors, state of mind, that influence and bias somebody’s thinking about whether their life is worth continuing with and whether they want to end their life. Its importance is that exploring those factors and considering what can be done to ameliorate them can lead to a change of mind. If we do not explore those factors and we do not attempt to ameliorate them, we are losing an opportunity to change the mind of people who may rethink their desire to end their life. Why I think of it as a vulnerability, rather than just as factors that influence a rational decision, which feels rather like how it is considered in the Bill, is that the emotional tone of the discussion that you have with people about all those factors is negative. They are not people asserting autonomy and pleasure in their ability to make a choice; they are people describing to you things that are negative influences on their life. The worry is that because there is nothing in the current medical assessment that requires a careful exploration of these factors, there is really no opportunity to change them.

Q Richard, thank you for coming in at such short notice. It is very much appreciated. Do you have concerns about whether the safeguards in the Bill adequately protect against coercion and vulnerability as Professor House has just described? Richard Robinson: Yes, we have concerns. I understand there is a potential amendment around ensuring that training and extra safeguarding elements are added to the Bill. We would be very supportive of that. As I have already said, while we have concerns, we also need to weigh that up around the notion that older people deserve the same kind of independence and autonomy as any other demographic. Therefore, the notion of vulnerability only extends to a proportion of those people who are older. Not all older people are vulnerable; it is important to say that. I have already said in an answer to another question that we are very concerned that the knowledge of even the notion of the abuse or coercion of older people is not widespread across the UK. If anything, that is getting worse rather than better, so this Bill really shines a light on a microcosm of society. We could be working together more adequately to ensure that older people are better represented, from an abuse and a coercion perspective, to ensure that any decision making is done within a safeguarding context. We are some way away from that at the moment.

Q Finally, to Dr Mullock, you have said that in all jurisdictions that have legalised assisted dying, the only meaningful gatekeeping is done by medical professionals. We only have retrospective monitoring that is primarily reliant on honest reporting, particularly discovering whether, or how frequently, coercion or flawed assessment has led to inappropriate assisted dying, and therefore challenging it, so it is impossible to know how many people have been sacrificed with lawful AD regimes. We have witnesses who have said there is no evidence of coercion, especially in examples in Australia and some US states where some assisted dying schemes have been implemented. When they say that, do you think they are being accurate? Dr Mullock: I am sure they are being accurate in terms of the data before them. The problem is that it is difficult to know and, as Richard Robinson has pointed out, this is a hidden problem. In terms of the Bill that we are discussing, one possible weakness here is that it identifies, only very obviously, problematic conduct in terms of coercion or pressure exerted by another person, and actually the kind of undue influence that might occur might be very subtle. More needs to be done to recognise that and the subtle encouragement that might take place, where a relative might frame their support for the person seeking to die in terms of, “This will be better for you,” and, “Have you considered this?” That is not necessarily an example of clear abuse, so when the person seeking to die then consults the doctor, they are not going to characterise what has happened to them as coercion or abuse. More needs to be done to discuss with the person whether or not they have been encouraged by the people around them.

Q This is a question to Professor House. I know you are opposed to the Bill, but if it were to pass, what role do you see for psychiatrists in a multidisciplinary approach? Professor House: It is a difficult question, isn’t it? I have already said that there is an element of assessment that is needed here—that is not currently acknowledged very much in the Bill—of somebody’s psychological state. I say “psychological state”, which has these elements to it, one of which is the presence of diagnosable mental disorder—the top of the list of importance is depression, which is well known, particularly in the elderly, not to be that easy. Older people do not express distress necessarily as openly and obviously as younger people do. There is an element of the psychological bit of assessment, which you could call psychiatric assessment, that attempts to identify and diagnose mental disorders, particularly depressive disorders. That is particularly difficult in the elderly because they are sometimes what is called “masked”. There is then the element, which is mentioned in the Bill, of the difficulty at times of judging somebody’s mental capacity. The trouble with the ideas of incapacity and coercion, both of which float around a lot, is that they suggest a very high threshold. There is this middle ground, which we have just been hearing about, with a degree of impairment of judgment, or bias in judgment because of what is going on. Those are the sorts of areas where you would want a mental health professional and probably a psychiatrist, but a psychiatrist with a particular interest in this sort of area.

Q My question is to Dr Mullock. You talked in your written evidence to this Committee—and you have just touched upon it—about the danger that someone could bring undue influence to bear on a person considering assisted dying, and that influence could be, in your words, “more subtle than outright coercion”. How do you think the Bill could be amended to avoid that danger? Dr Mullock: I suggested in my written evidence that throughout the Bill, where it says that the person has a “clear, settled and informed wish”, you could add that the wish should be “clear, settled and autonomous”. Also, on whether the person has made the declaration voluntarily, it says that they must not have been “coerced or pressured”. You could add that they must not have been “encouraged, coerced or pressured”.

Q Not to put you on the spot too much, but I have tabled amendment 82 and new clause 5 to address the encouragement point. Have you had a chance to look at those? If you have, do they adequately address some of your concerns? Dr Mullock: I am so sorry; I have not had a chance to look at that.

Don’t worry. Thank you very much.

Q Could I ask Dr Mullock another question? I was interested in what you said about your involvement with citizens’ juries, both here and elsewhere. As we as a Committee and Parliament are weighing up some of these issues, such as the points on autonomy and safeguards, where do you think the public settle on those when they investigate them in depth? In particular, can you say a bit about the eligibility criteria being six months with a terminal illness? Dr Mullock: I am sorry; what do you mean by how the public settle on them?

I suppose I am interested in your observations of the outcomes of citizens’ juries. I think we have all seen bits of polling, but that is not necessarily polling of individuals who have wrestled with these issues in a deliberative manner in the way that I understand citizens’ juries are designed to do. Dr Mullock: I was absolutely honoured to take part in both juries, and it was fascinating. I do not know whether you know, but both the jury in Jersey and the more recent English citizens’ jury were selected to represent public opinion. Both juries went through a huge amount of evidence, which was very balanced between being pro and anti lawful assisted dying. I think it is fair to say that the majority of people, as they became more informed and learned more about the dangers, the benefits and the ethical arguments, stayed quite true to their initial beliefs. There was some variation, but I expected that more of them would find themselves being opposed to any form of lawful assisted dying, and that was not the case, so that was really fascinating. On your second question about the eligibility requirement, the arguments that have been put forward about the difficulty in making a prognosis are true, but I think this is probably the best way to deal with it, because allowing assisted dying for only those people who are already dying represents a much safer way than opening it out to people who are suffering unbearably. Although the arguments for allowing people who might have much longer to live, and therefore much more suffering to endure, are really strong, this is about limiting it to an end-of-life option, rather than opening it out, because of the dangers of this that we have seen in places like Canada.

Q Widening my questions to Mr Robinson and Professor House, you talked a bit about capacity, and about coercion and the detection of it in life-or-death decisions, which clearly this would be. I am aware that there are those decisions every day in the NHS, around withdrawal of treatment and so on, but it strikes me that there is not a clear process of independent verification of capacity and so on, which the Bill will introduce in this instance. Will you say a little about your assessment of the current adequacy of those protections in withdrawal-of-care decisions in the NHS? Professor House: I cannot speak more generally—I am not aware of research into this area. I can only tell you about personal experience, and that is, in the service I worked in, if someone said that they wished to withdraw treatment, and that would lead to death—you come across that with people who stop insulin who have type 1 diabetes, or who want to stop dialysis who are in end-stage renal failure—we would always ask to see them. The question was often: “We are really worried about this, because there is no reason—their physical health is okay enough and they don’t seem confused or lacking mental capacity,” but it is an unnerving and uncomfortable decision that we do not like.

Q To clarify, you asked to see them—that, presumably, would be good practice—but there is nothing in law that requires that on those decisions at the moment. Professor House: At the moment, no.

In contrast to the requirements that would be in this Bill, which would require that assessment to be made. Professor House: You are introducing the idea that this Bill has more safeguards in it than routine NHS practice does, are you? I think that is the point.

Yes, I am asking whether that is the case. Professor House: I think the problem with this Bill is what assessment it expects to be made that does not cover the ground that I have been talking about. It just asks, “Is this person able to make decisions?” Essentially, that is what the assessment boils down to, and it does not cover the psychological and social assessment. What I am suggesting is not a terribly radical thing—it is in the guidelines from the National Institute for Health and Care Excellence, in other clinical circumstances where we come across people who say they want to end their life. NICE guidelines say that we should undertake a psychological social assessment. Richard Robinson: We as an organisation are calling for the need, in a safer ageing society, to foster an environment where the safety and dignity of ageing individuals is guaranteed. We have seen some horrific examples, such as in covid with DNRs, and I think there are some parallels to be drawn there. We want to see as much robust safeguarding and checking in place as possible to ensure that that kind of issue does not come to the fore.

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

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

Q If I may, I will push Professor House on the evidence he was giving to Mr Atkinson’s questions, so that I understand the necessity for psychiatric assessment under the current legal framework. Clearly there are degrees here. If a patient who has diabetes refuses to take insulin but would otherwise be able to manage their disease, then they would be referred to you, but is it your experience that if a patient rejected a round of chemotherapy, they would usually be subject to a psychiatric assessment? Professor House: No, these things depend on the circumstances. If somebody says, “I’ve had enough of this. I’ve had chemotherapy and I don’t want any more,” they would not be subject to that, unless it was such a sudden change in the context of other changes in the person that the oncologist treating them thought something needed further explanation; it would not be terribly common, no.

Q Would the decision about the need for a psychiatric assessment be undertaken by a medical clinician? Professor House: In the circumstances you are talking about—generally, yes.

Q Dr Mullock, during your oral evidence to the Health and Social Care Committee you recommended focusing on Oregon’s approach in particular. Do you have any concerns about the number of people in Oregon who cite being a burden as their reason for choosing assisted dying? Dr Mullock: I think this is incredibly complicated, because people will have multiple reasons for choosing to seek an assisted death, and that might be one of them. For some people, there is an argument that their experience of feeling like a burden is really overwhelming. If you have been a very independent and active person, the impact of being and feeling like a burden will be so devastating, so in addition to having a terminal condition that is going to end your life soon anyway—and all the pain and fear that that might bring—there is that additional reason. I do not think we should necessarily say, “Oh, well, that is really problematic there—we can’t engage with the reasons people feel like a burden.” Obviously, feeling like a burden does not mean that people are finding you to be a burden. The questions about whether those caring for you are caring for you well, or whether you are a victim of abuse, are all tangled into the very difficult experiences that terminally ill people have.

Q I accept the point. My challenge would be that we have heard a lot of evidence from a variety of people, and I think it is generally accepted that there is a difference in the availability of care across the country, particularly for people of certain ethnic backgrounds or who are deprived, which means that someone could be at particular risk of feeling a burden if they are a member of those groups. This is at a time when care is in the state it is in, and we are often reliant on people having individual property and using it to pay for their social care. Do you not see that as an inherent risk of introducing the Bill? Dr Mullock: It absolutely is a risk, but I think the Bill can be constructed in a way that minimises that risk. The Bill as it stands before the amendments is pretty rigorous, but with amendments we should be able to minimise that important risk as far as possible. If we think about what happens at the moment, just because people cannot legitimately and lawfully seek assisted dying in this country, it does not mean that they are not subject to the pressures of feeling like a burden and having a terrible time. Social care and palliative care availability is a separate issue. It is really important, but it is a distinct issue. Although it is a powerful argument to say, “We don’t have excellent palliative care provision in this country and end-of-life care is not where it should be, and therefore we cannot allow lawful assisted dying”, it is also really problematic, because unless we are going to create absolutely brilliant palliative and end-of-life care, we can never empower people to make the choice about how they end their lives. That is really problematic, because you are then saying, “ We’re forcing you to endure this imperfect, substandard system, and we can’t allow you to choose an assisted death because the system isn’t very good.” It is a really difficult and complicated set of arguments.

I was merely suggesting that the direct evidence from Oregon is that being a burden is something that might come from a lack of decent social care, and it might be encouraging people to make the decision to seek assisted dying—but fair enough.

Q My question is to both Dr Mullock and Professor House. In your written evidence, you both refer to clause 18(9) and issues regarding the obligations of the doctor if the procedure either fails or if there is a long-delayed death. I accept that it is a small number, but we know from elsewhere that there are cases where the death takes some days—three to four days in some cases—or where the procedure fails. The Bill says that the doctor must stay with the person for the entirety ofthat time. I am trying to understand from your written evidence how you feel that measure should be amended to make it stronger, because at the moment there is no mention what the doctor should do to intervene, and clearly it is not practical for a doctor to stay for three to four days. What are your views on how that could be amended?

Just before you answer, I bring to the attention of Members that we have about 13 minutes left and five people who want to ask questions. I ask Members keep their questions as tight as they can, and the witnesses to take that into account as well—otherwise I will regrettably end up cutting witnesses off at spot-on 3 o’clock. Dr Mullock: I will answer very quickly. Informed consent needs to direct what happens if the procedure does not work quickly. There is a very rare risk that the patient might regain consciousness and not die. This is incredibly rare, but nevertheless patients should be informed about that risk. Obviously it is not practical for doctors to remain with people for three or four days. I do not know the risk of this happening, but whatever approach is taken clinically needs to make sure that the risks are minimal and that patients are provided with an informed-consent approach to what might happen if things do not go as planned. Professor House: It is a striking feature of the Bill that informed consent is not really specified properly. The doctor is required to ask the person what they want to happen in the event of complications without having previously explained to them what all the complications might be. They ask them what they want to happen, but there is no requirement then to discuss what might happen in line with their wishes. The important element of this comes when you think about the mechanisms that might come into play here, particularly the use of what is called a medical device—a syringe driver. In other jurisdictions where this happens—Victoria and Canada, for example—a doctor steps in with a lethal injection, which is not allowed here. They call it “physician administered” in Victoria. It is not specified what assisting somebody with the use of this medical device might mean, particularly if they are so disabled that they need a proxy to sign the forms for them, or if they are now slightly impaired by having taken some medication. All that needs much tighter specification. There is no standard informed consent form related to the Bill, for example—of the sort that you would expect to sign if you were having a serious intervention in the NHS. The schedules—the forms that people will sign—do not, for example, say that they have had all the complications explained, and the side effects, or what any subsequent intervention might be. You are putting your finger on something that is very underspecified in the Bill.

Q May I come to Professor House for clarification? For someone who has had no primary diagnosis of a mental illness got diagnosed as terminally ill, is there the possibility that that condition could make them feel depressed or hopeless? At that stage, can that influence their decision-making capacity? Professor House: It is certainly true that depressive states and depressive disorders are much commoner in people with severe physical illness than they are in the general population. Since there is not a lot of evidence that those depressive disorders cause the severe physical illness, we can assume that the depression is a response. About 20% or 30% of people are likely to have significant depressive symptoms. We did a study in people after stroke, for example, and found that 10% of them were saying that they now thought their life was worthless and no longer worth living, and yet only a tiny proportion of those people go on to suicide. We must be able to look at the factors that protect people in that sort of situation. Yes—I think your question was, “How common is it, and is it a response to the circumstances and the illness?” The answer is yes, it is.

Q First, I work as a GP with old people—I look after a nursing home— and I have to do adult safeguarding training every year. Secondly, more than 90% of psychological assessments are done in primary care. Professor Esmail, do you think that GPs are capable of spotting coercion and doing a psychological assessment? Professor Esmail: Coercion is a difficult one, but absolutely, with all the provisos people have talked about and how sometimes it is hidden and all that sort of stuff, but I think we are always thinking about it —absolutely. Even when someone comes in and, as I said, asks for lasting power of attorney, it is definitely at the forefront of my mind as to who is making them do this, why and so on. For psychological assessment, yes, as you said— but not only psychological assessment. Something like 52% of people choose to die at home, looked after by their GP, so in terms of palliation—I mean, I know people talk about how terrible things are, but it is also provided very well for the vast majority of people, who do not end up in the situations that people have been talking about. We do need to have perspective. Yes, I absolutely think GPs have the skills to make those assessments and are doing them all the time, in a way. We now work as multidisciplinary teams, so we have access to a lot more information and expertise within our wider team to help us with those situations. The team is in a way very well placed for that, yes.

And do they—

Order. I have to take a question from another Member—Tom Gordon.

Q I have a question for Professor Esmail. One of the things that we have talked about with different witnesses is whether we should have a wider panel of people looking at these decisions; that might encompass people from social care, medical or legal backgrounds. I think that that would make sure that some of the issues that we have talked about would, hopefully, be more robustly picked up on. Do you think that by moving towards that in the Bill—were we to have assisted dying—it might provide a more holistic approach to end of life and to giving people that option? How might that influence and change palliative care and other interactions? Professor Esmail: I feel that this Bill will make things much better, in the sense that when you have a conversation with someone, they could sometimes have even as a reassurance, “Look, if things get really bad, I have this option available.” That is important, and it can certainly help in that respect. In terms of holistic care, currently when I look after dying people I never do it on my own; I am with district nurses, Macmillan nurses, or on call to a palliative care consultant. There is already a team of people looking after dying people. Where it works well, it works very well. We should not be burdened by the fact that everyone complains about how terrible everything is. I would say that probably 95% of the time, it is okay. There are issues with social care and so on, but I think that palliative care—the drugs people need, how often they get them and who gives them—works very well and it works in a multidisciplinary way. I think that this legislation will allow a much more open discussion and proper monitoring. It will improve training, guidance and everything else. People say that it will enhance palliative care, and that is what I think will happen.

Q I have a question for Professor Esmail. We heard from the Australian witnesses this morning that there was a period of implementation after legislation of 18 months. Do you think we should have a period of implementation, and what should that comprise? Professor Esmail: I think we will need to have one, because we will need to train people up and put in place all these things. You do not want to pass a Bill that a lot of people cannot access. It will require thought about how we plan this. As with any service, it is much better to think about it and ensure that we cover all options. As I said, the worst thing would be to pass a Bill and not have the right things in place. For example, the training will take a while. I am not saying that it will take 18 months to train someone, but we are talking about training groups of doctors and nurses, and ensuring that the pathways are correct and that the legal system can deal with the requests. That will clearly take time, and we will need a lot of systems thinking about how it all fits together. You cannot specify, and I do not know how good this country is at this, but that is what should happen. It can sometimes happen very effectively and quickly.

I am afraid we will only have time for the last question from Rachel Hopkins. We have only three minutes left.

Q We have spoken a lot about the range of doctors and nurses who will be involved in a multidisciplinary team. Have you thought about the protections in the Bill for those who do not wish to participate? Is there the right balance for them not to participate but to still work with a patient who might want to take this choice? What are your views on that? Professor Esmail: These safeguards already exist. For example, if someone says, “I want you to remove my ventilatory tube, because I want to die”, as a doctor you can say, “I’m not able to do that for you. I will ask my colleague.” When people come to us seeking termination, for example, doctors still have the right to say, “Look, I’m not going to do anything with this, but I will refer you to a colleague.” Those safeguards are there, and I think it is right that those who want to and those who do not want to are given that option—and, as I said, the safeguards already exist. What would be wrong, though, would be for someone to say, “Well, I am against it, and therefore I am not going to do anything about it.” That would not be right, so you would have to have an obligation; it just has to be a conversation where you say, “I will ask my colleague to see you.” You do not even to say, “I’m against it” or anything. That works very well with abortion law at the moment, and it should remain as an option.

That brings us to the end of the time allotted for the Committee to ask questions. I thank our witnesses on behalf of the Committee for their evidence, and we will move on to the next session. Thank you very much. Examination of Witnesses Dr Lewis Graham, Lord Sumption, Baroness Falkner and Fazilet Hadi gave evidence.

15:00:00

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, I heard an interview with you on the radio, I think before Christmas, in which you expressed doubts about the third layer at the High Court. We heard evidence earlier that there is an alternative route that might see more of a panel sitting, rather than a High Court judge. Could you expand on your view of what that third layer could and should look like? 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.

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 I may be speaking out of turn, but the sentiment of the House generally seems to be that there should be a third layer of supervision over the process. There are other territories have that third layer of supervision, such as Spain and Australia. Have you examined any of those, and is there a model that you think might be effective? 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.

Q It may flow from what this third layer of a panel or court is doing, but what sort of information would be desirable for the panel to have before it in order to add a meaningful layer of scrutiny? 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.

Q Lord Sumption and Dr Graham, you will have seen that clauses 26 and 27 include criminal offences. Do you have any views on the operability of those criminal offences? Dr Graham: My only contribution here can be that similar offences in other jurisdictions have been held to be perfectly compatible with European human rights law. Lord Sumption: I have no problem about the criminal-isation of people who abuse or distort the system, which is what those two clauses envisage.

Q Dr Graham, thank you for your written evidence, which was very helpful and stated your view that the strength of the clauses in the Bill make it compatible with the European convention on human rights in relation to article 2 on the right to life and article 14 on freedom from discrimination. Can you explain why you hold that view? What has been the view of the European Court of Human Rights in relation to assisted dying laws in other signatory states? Dr Graham: There are two main challenges to this legislation, and to legislation like it, in relation to the European convention. As you say, one relates to article 2 and one relates to article 14. The article 2 challenge can be dismissed fairly quickly, because we have authority from the European Court saying that “the right to life enshrined under Article 2 could not be interpreted as per se prohibiting the conditional decriminalisation of euthanasia.” As a matter of precedent, that is fairly clear. The trickier argument comes with article 14, which is the anti-discrimination right. There is an argument that goes something like this—I hope that those who hold this view think I am giving it a good airing. By allowing some groups to access assisted suicide, but not other groups—in this Bill, allowing terminally ill adults who meet the criteria in the Bill but not non-terminally ill adults who do not meet those criteria—you are treating two different groups in different ways, and that is discriminatory. There is an argument that, because of that, the courts would find that the Bill is unlawful and needs to be expanded—that groups outside of the terminally ill that meet the criteria of the Bill need to be given access to assisted suicide. I think that argument does not work for a few reasons, chief among which is that in our jurisdiction treating different groups differently is not unlawful. Treating different groups differently without good justification is unlawful. The question of justification, while it is for judges and the courts, is a question on which judges have deferred heavily to Parliament, especially in areas that involve difficult social, ethical or moral issues. If I may be forgiven for reading from a court’s judgment one more time, in the case of SC the Supreme Court said: “The ordinary approach…gives appropriate weight to…the primary decision-maker”— the primary decision maker being Parliament— “a degree of weight which will normally be substantial in…matters raising sensitive moral or ethical issues.” We can all agree that this Bill involves sensitive moral or ethical issues. My point is that when it comes to justification, courts are very deferential to Parliament. Courts think that Parliament should be deciding whether treating two groups in different ways is justified or not. That is why, in my view, there is no real truck to the argument that article 14—the anti-discrimination right—will be operative and cause the Bill to be declared incompatible with the convention in any way. I hope that is an adequate summary of my view.

Q My next question is to Fazilet Hadi and Baroness Falkner. First, I am passionate about ensuring that the Bill creates the opportunity to hear the voices of disabled people in monitoring the impact of its implementation, should it be passed by Parliament, and the treatment of disabled people in the NHS as a result. What structure or mechanism could work to facilitate that? Secondly, would that be applicable to all protected characteristics under the Equality Act, or do disabled people have a specific status that needs special treatment? Fazilet Hadi: We have a principle in the disabled people’s movement: “Nothing about us without us”. I suppose a simple answer to that question is that whether it is the discussions on this Bill and the voice of disabled people in shaping it, or in monitoring, disabled people must always be at the table. As you all probably know, Disability Rights UK and other disabled people’s organisations oppose the Bill, and I hope I get a chance to say why later. Should the Bill go through, it would be good to see a monitoring mechanism. I cannot say what that should be, but it would be good to see disabled people shape it. Some 45% of older people are disabled people, so disabled people are going to be very affected by the Bill. It is often our experience that we are the last people who are spoken to; maybe that is what is behind the question. We should of course be at the table now in respect of whatever mechanisms, and in the shaping of any implementation, should the Bill be passed. But as I said, we are opposed. Baroness Falkner: Can I touch on clause 26 and the earlier question, as well as article 2 rights? Parliament should appreciate that coercion or pressure is not necessarily something that is applied directly by other individuals. The UN published an open letter in advance of the Canadian legislation that pointed out that people with disabilities, older people, and especially older people with disabilities, may feel subtly pressured to end their lives prematurely due to additional barriers, as well as the lack of appropriate services and support. Article 2 goes to the heart of appropriate services and support, as well as the general right to life. It is important that all practical social conditions, support, care and services are in place so that people with serious or terminal illness can decide how and when to end their life freely and without coercion. On coercionary pressure, we have heard recently about social care provisions. Social care is an integral part of this story, because the data shows that it is older disabled people—disabled across a spectrum including mental health, dementia and so on—who are likely to be in care or to require social services. If we are not going to get the result of those reforms until 2028, we are told, with potentially no legislation in place for another couple of years after that—say, 2030 or 2031—then all of you in Parliament need to think about whether this is putting the cart before the horse. In deciding on these provisions, which are integrally linked to the other aspects of disability and access to care—I hope we will come on to the variable treatment of palliative care later—you need to think about whether this is the right order of things. I will leave it at that and pick up other related points later.

Q With respect, my question was about whether you think that, should the Bill go through Parliament, there should be some kind of body, possibly an advisory council, that disabled people in particular should be involved with. Your other point speaks to some evidence that we heard yesterday and earlier about the anchoring, where there is assisted dying in the legal system, of the quality and level of provision of palliative care. I would be grateful if you could speak to the point of my original question, which was about the need for some kind of advisory body that includes disabled people, should the Bill pass. Baroness Falkner: Had there been a Public Bill consultation on the Bill, you would have heard from the different players that need to be consulted. We do not have an opinion on the kind of advisory body, because we would find it difficult to see where it would fit in with the provisions of this particular Bill, but a public consultation in advance of the Bill being written would have been the way to deal with that.

Q Dr Graham, on the points about article 14, I very much appreciate and welcome your belief in parliamentary sovereignty, and the suggestion that the courts should listen to Parliament—most of us agree with you on that—but it is a big hope. They do have the opportunity, and have demonstrated their power, to object to statute on the basis of the ECHR. As you said, they could allow assisted dying, and indeed discrimination within an assisted dying law, if there was some justification for it. You are presumably aware of Lord Neuberger’s judgment in the Nicklinson case. He said that there was “significantly more justification in assisting people to die” who have long-term chronic conditions and are going to suffer for years than for people who are on the verge of death. I also point out Lord Bingham’s judgment in the Pretty case, which suggested there would be discrimination against people who are unable to perform the final act themselves. Surely, then, there is a very strong case to be made under the ECHR that the Bill would be discriminatory. I would value your response on that, and maybe from Lord Sumption too, if he wants to come in. My second question is to you both, on article 2. If it were to be allowed, the safeguards that would be required —I shall quote from the Mortier case, which you know well—would be that “medical professionals are complying with the free, informed, explicit and unambiguous decision of their patients” without pressure and abuse. Do you therefore accept that this comes down not just to the safeguards in theory, but to how they actually operate in practice? We have heard very serious concerns on that front. Are you confident that the courts would allow this? That is, of course, assuming this is an NHS service, because it could be that they decide it should not be. Dr Graham: The takeaway message from cases like Nicklinson and others, both at the domestic level and the European level, is that this is a decision for politicians and a decision for Parliament—you mentioned the sovereignty of Parliament—regardless of what Lord Bingham and Lord Neuberger might think personally about or, I suppose, obiter about the relationship between discrimination law and the provisions that were looked at in those cases. For the reasons that I set out earlier, on the justification question, judges in our jurisdiction are heavily deferential towards the decision of our elected Parliament. In any future challenge, and there probably will be a challenge—we do not know, but there is nothing to stop someone from bringing one—the courts will adopt the same line of thinking. I agree with you completely that the theory and the practice must both be taken into account when assessing whether there are adequate safeguards for the purpose of article 2. All I want to note is that in the Mortier case, which you mentioned—in which the Belgian legislation and its compatibility with article 2 were challenged before the Strasbourg Court—the Court found that there were sufficient safeguards in that legislation. That is despite the fact that if we put the Belgian legislation that the Court was looking at and this piece of legislation side by side, this legislation contains, at least in theory, more and stronger safeguards. The Belgian legislation did not have a waiting period; did not require judicial approval; was not restricted to a terminal illness; and was not restricted to adults only. Yet the European Court said that there were sufficient safeguards for the purposes of article 2. At least from a precedent-based perspective, I think there is a strong argument for saying yes, the Bill complies with both article 14 and with article 2. Lord Sumption: I have read Dr Graham’s evidence, and obviously have listened to him this afternoon. I agree with it in its entirety. Dr Graham points out the additional layer of safeguarding in the form of clause 12, but I do not understand him to be suggesting that without clause 12 the Act, if the Bill became an Act, would be defective on human rights grounds. I also agree with Dr Graham on the question of the likely approach of the courts. The courts would be dealing with legislation that reflected a balance between two very powerful but contradictory moral instincts, both of them fundamental to our legal and social culture. That is not a context in which the courts are going to feel that they ought to be putting their own oar in. I would also point out that, since the Nicklinson case, there have been a number of decisions of the Supreme Court—two in particular: the Shamima Begum case and the Child Poverty Action Group case on the two-child limit—in which the Supreme Court has expressly said that in issues of this kind, the courts should not devise policies of their own, independent of policies that can be discerned in parliamentary legislation. It is therefore even less likely now that the courts would intervene on human rights grounds than it was at the time of Nicklinson.

Q My questions are to Dr Graham and Lord Sumption. The Bill, in its current form, has several opportunities for confirming capacity and whether the people who want to take up assisted dying have the capacity to do so; there are a number of safeguards and steps within it. That is more than is typically required for any other end-of-life decisions. I wondered whether you would comment on that. Is the Bill safe enough in its current form? If not, what other steps could be added? Dr Graham: The only thing I would feel comfortable saying is that, yes, I agree with you that the Bill does contain further safeguards, more safeguards, than some of the other legislation in European countries. The legislation in those countries has been held to be compatible with the right to life and with other rights under the European convention. From a pure human rights perspective, which is all I feel qualified to comment on, I think you are on very safe ground. Lord Sumption: I take exactly the same view. We must all be conscious of the fact that coercion, even when it is overtly applied, is extraordinarily difficult to detect: the kind that Baroness Falkner described a few moments ago as the subtle pressures that old and disabled people—in fact, people who are very sick generally—will feel without the need for any pressure. That spontaneous feeling of pressure is, I would have thought, practically impossible to detect. We have to live with the limitations of what human beings can do. In the end, I have come down in favour of the principle behind the Bill, but I regard it as an extremely difficult balance to draw—notably, for that reason.

Q Baroness Falkner, do you consider that in its current form the Bill upholds the rights of all the different groups whose rights are protected under the Equality Act 2010? Baroness Falkner: Several human rights are engaged in the Bill: article 2 has been discussed; article 3 relates to inhumane and degrading treatment; article 8 is the right to privacy; article 9 is about freedom of thought, conscience and religion; and of course there is article 14, which has been discussed. They are all engaged at different levels of the Bill, and they are important and serious considerations. We are not clear, at this point in time, that the reservations we have about them can be resolved without further changes to the Bill.

Q Can you give me an example of one of your reservations? Baroness Falkner: Yes. For example, you have just been discussing capacity, and capacity is a very serious consideration in our concern. You have been discussing coercion as well. There is evidence—coming back to the UN report I mentioned a few minutes ago—that the special rapporteurs on persons with disability and on human rights were very concerned. As Lord Sumption has said, when we have unclear law, it is very hard to understand the extent to which—when it comes to the definition of terminally ill, of coercion, of capacity—judges should have exemptions on, for example, conscientious grounds. There is a whole host of other areas: regulations, for example. I think the Bill calls for regulations to be laid within five years—an assessment of the measures of the Act to be laid within five years. We wonder why the Government cannot even now, as the Bill is going through, do an impact assessment and a human rights conformity assessment to draw out all those concerns in a more effective manner. It is not too late for the Government to do that. We would suggest that consideration be given by the whole of Government to doing an assessment of those human rights implications, working to cover this Bill as they would cover a Bill that they had proposed themselves. We are not entirely clear that a private Member’s Bill is a suitable vehicle for this issue, to be entirely honest. I may not be well informed enough, but I cannot remember a private Member’s Bill of such import going through since, perhaps, David Steel’s Abortion Act 1967. There may be other instances of a Bill of that import, but they do not come to mind right now. We look at the import of the Bill and at the fact that it has not been, sui generis, designed for England and Wales; it borrows quite a lot from other jurisdictions, although the number of jurisdictions that have passed similar laws is still relatively limited. Were this a Government Bill or a Government-sponsored bill, even at this late stage, it could have a whole of Government approach to looking at the different aspects that are engaged: disability rights; older people’s rights; the fact that ethnic minorities have very differential attitudes to some of these things; cultural rights. That would be a better place for Parliament to engage with this profoundly important issue—on which, I should add, we are neutral, in the sense that we can point to the practical problems with the Bill, but we do not take a position on whether the Bill is right or wrong in what it is advocating. We are coming to it more from a process and improvement point of view. Fazilet Hadi: Could I just add to that?

I am sorry—just bear with me. Seven people wish to ask questions, and we have just half an hour. If you do answer, can it be very succinct if possible? Fazilet Hadi: Thank you. I just wanted to support the Baroness, and also say that we believe the Bill will pose a challenge to protected characteristics, particularly of disabled people—and indeed other groups, because disabled people are LGBTQ+ and are black and minority ethnic. The equality journey for disabled people is relatively recent in this country. The Disability Discrimination Act was only passed in 1995, and the Equality Act was only 15 years ago. We are a country that is unequal—that has internalised ableism against disabled people—so I do think the Bill will have a serious and profound negative impact against the valuing of disabled people’s lives.

Q I have one question following up with Baroness Falkner; then I will come to you, Fazilet, if I may. The Equality and Human Rights Commission’s briefing says that “to ensure that assisted dying is compatible with Article 2 and Article 3 rights…high-quality palliative care should be available to all who need it.” Given that there is no requirement of an assessment of the availability of palliative care before the Bill is passed, how certain are you, Baroness—and how certain do you think we can be—that in passing this Bill, article 2 and 3 rights are not being breached? Baroness Falkner: Forgive me; I should have been clearer about that. That was what I was referring to earlier. We have quite a lot of evidence. Marie Curie published a “Better End of Life” report in 2024 that talked of “patchy and inconsistent provision of care”. There is regional variability. The Care Quality Commission and Hospice UK have raised the issue of poorer access to palliative care for people with learning disabilities. In 2022, Marie Curie also highlighted the issue of cultural and ethnic inequalities. That is why an assessment at this point in time, before MPs have a definitive vote on the proposals, would be the right thing to do. It would also increase public confidence in the Bill. We think that public confidence in the measures being proposed would be profoundly important to people’s trusting that doctors and judges will also be mindful of their responsibilities in an adequate manner where terms are not clearly defined.

Q Fazilet, doctors are members of a caring profession, but there are ways in which—wittingly or unwittingly—they can end up coercing disabled people; there are reports of that. Would I be right in saying that? If so, how does this happen and how common is this experience for disabled people? Fazilet Hadi: Disabled people share their stories with us and other organisations. I am sure that doctors are a mixed bag, like all of us, but our experience of the NHS and of the medical profession is not wholly positive. We often find that doctors, because they cannot treat or cure us, do devalue our lives. We have had disabled people who have actually had it suggested to them or their families that their lives are expendable, when actually those people have got a lot of years to give. We also know that when you acquire disability, which most people do—most people are not born with one—it is absolutely frightening. I am sure that most of you would be absolutely frightened to be blind; it is not something you are going to die of, but you will have that fear, because you are not used to it. Whenever you acquire a disability or that disability gets worse, you will have fears, and I suppose that makes what doctors say even more important. If doctors are not on our side because they are thinking, “Should we mention the fact that they could have an assisted death?”, that poses a big cultural issue for the NHS, but also for us having confidence in the NHS. I actually find the NHS to be one of the organisations and institutions in this country that is least comfortable with disability; honestly, I could probably get better equality at my railway station. I say that because I think doctors have a very medical model—of course, we welcome that: they want to cure, they want to treat. But they do not always have the empathy to understand that some of us lead really good, fulfilled lives with the most complicated health conditions or impairments. Treating doctors as absolutely scientific and the fount of all knowledge: I think those days are gone. On giving them the powers to steer us towards assisted dying, I should say that they are not a group always on the side of people with disabilities. I am not really picking on doctors. To be honest, society has a lot of internalised ableism, and doctors are just part of that wider society.

Q I have a question for Baroness Falkner. I want particularly to probe the socioeconomic duty. What is your assessment of that as it relates to agency and control at the end of life? My constituents in Sunderland, unfortunately, are on average notably less well off than the rest of the UK. Is it not the case that at the moment there is choice at the end of life for people who are well off and able to travel to Switzerland, but poorer people do not have that choice? What is the EHRC’s view from a socioeconomic point of view? Baroness Falkner: For clarity, a socioeconomic duty has not been incorporated. It is the current Government’s intention to incorporate that part of the Equality Act, but it has not been incorporated so we are not looking at it through that specific prism. But you make a very valid point because inequalities in healthcare, housing and all the associated factors that play into good health and wellbeing are there, and they exist palpably—even across geographical parts, from one bit of an area to another. They play actively into it. Ms Hadi will be able to give better testimony than I could on this but, from what one understands, GP provision and general access to healthcare are poorer where demographics are poorer than it is in the better performing parts of the country. One other factor to consider in terms of a postcode lottery is that people in wealthier parts of the country tend to be more highly represented in private healthcare than in public healthcare and use of the NHS. That also impacts their choices and the care they get. Fazilet Hadi: On health inequality, I take your point about how some of us can afford to fly off to Switzerland and some cannot, but some of us live in boroughs where we will die 10 years earlier and some of us have learning disabilities and might die 27 years earlier. I know you are looking at clauses, but this Bill will go into the real world, and that is what is happening in the real world—people are not getting social care and not getting palliative care. They are dying earlier. More poor people will die earlier and more poor people will have fewer options, fewer choices, less nice homes and fewer facilities to support them. As Baroness Falkner said earlier, they will unfortunately have insufficient social care and palliative care. When we are looking at inequalities, we need to note that this Bill is going to be plunged into a society that has deep, entrenched health inequalities that do not play out well for people who are poorer.

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

Order. I think it is best if we ask questions of the witnesses. As I said, the Committee—you, not me—has allocated an hour to this, and I want to make sure every Member gets an opportunity to speak. We only have 20 minutes left, with five or six people to go.

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

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

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

Thank you.

Q Dr Graham, in paragraph 21 of your very helpful written evidence, you say that the judicial involvement in the process strengthens the Bill, in terms of convention compatibility. Do you agree with Lord Sumption about the effect on convention compatibility if that stage were not present, and do you have any comments on the suitability of a judicial function, and whether there is any alternative? Dr Graham: I am afraid my answer will be quite short.

That is welcome. Dr Graham: I think the judicial safeguard strengthens the convention compatibility because of the argument relating to Mortier that was set out earlier, but I do not think it is essential for convention combability because of the case law I mentioned earlier.

Q Ms Hadi, at the start you said, “Nothing about us without us.” With regard to your previous testimony, I am interested to know how you feel that disabled voices have been heard, if they have been heard, in this process. What gaps have there been, if any? What can the Committee and the Bill do to fill those gaps? Fazilet Hadi: To build on what Baroness Falkner said earlier, if this had been a Government Bill, we would obviously have had some pre consultation: we would have had a Green Paper and a 12-week consultation period, and we might have had engagement sessions with disabled people. The responses would then have been fed back, and we would then have heard about what the Government were going to do next. Obviously, because it is a private Member’s Bill, none of that has happened. I think there was a call for evidence at the beginning of January, but there was no time period, no framework and no accessible information. Given that this Bill affects disabled people really, really profoundly—as I said earlier, disabled people often live with conditions that will become terminal illnesses—I feel that it has not been sufficient, and I would like to see much more discussion with disabled people and disabled people’s organisations. Ideally, I want to see the process that Baroness Falkner talked about happen, ideally with a commission and a Government Bill. If the Government are committed to this private Member’s Bill and want it to happen, they should take over and make it a proper part of their legislative agenda. No, I do not think there has been sufficient dialogue and input from disabled people to this day. Having said that, the first we knew of this Bill was in October, it had its Second Reading on 29 November, and now we are here, so it has been so quick. A lot of disabled people—because we have sensory disabilities, learning disabilities and so on—need a bit more time to input. Thank you for the question.

Q I want to make a brief point of clarification, based on what both Baroness Falkner and Ms Hadi said. In the debate on the motion on the money resolution in Parliament last week, I stood at the Dispatch Box and confirmed that the Government will publish an impact assessment before Report stage. We are obviously working on that with officials. I will also add as a point of clarification that both myself and my ministerial colleague are working with the sponsor of the Bill to provide assistance and advice, purely on the workability and operational aspects of the Bill, and impacts of the Bill, should it gain Royal Assent. It is important for the purposes of this discussion that everybody is on the same page on that point. The Government are absolutely remaining neutral on the principle of the Bill, but it is our job to ensure that any Bill that passes through Parliament is workable and implementable as and when it gains Royal Assent. Baroness Falkner: Will there be a human rights compatibility assessment as well as a delegated powers memorandum? Those are the other things that Government-sponsored legislation would have contained.

We can take that suggestion away. Thank you.

Q Ms Hadi, we heard evidence this morning that the majority of disabled people support the Bill. I would like to hear your comments on that. What analysis do you have on whether the majority of disabled people support the Bill? Baroness Falkner, based on what we have just heard, if we had had the equality impact assessment before oral evidence was sought and before line-by-line scrutiny, would you have supported the approach more? Baroness Falkner: My answer will be very brief. Every additional piece of analysis is helpful, because there are gaps in the analysis. The problem is that because we have not had a consultation, and because the process of deliberation was not transparent—it never will be with a private Member’s Bill—there is a sense of not knowing quite enough as to the reasoning behind—

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

I am allowing latitude to tease the matters out, but I am sure that the witnesses have heard what you have to say. Baroness Falkner: I will briefly conclude. Any bit of additional analysis is welcome, but quite a lot of additional analysis needs to be done, and we would welcome that. Fazilet Hadi: Disabled people are not a homogenous group. Just like the general population, disabled people will have all sorts of views. Probably some will be very informed about this debate, and others will not be. Our position as Disability Rights UK and the disabled people’s movement is not about counting how many people are supportive or not supportive; it is much more about the knowledge and evidence that we have about how society works, how discrimination works, how equality works, and the barriers that we face. I take the point that you are looking at the clauses of the Bill, but you were testing the real-world implementation and implications of the Bill when I was listening to the earlier session. I will just say some of the things that are in the real world at the moment, and these have been mentioned: insufficient social care and healthcare; insufficient palliative care; rampant and worsening health inequalities; disability discrimination, and the devaluing of disabled lives. We only have to go back five years, to the covid pandemic, to see how disabled lives were devalued. We all know about the “Do not attempt resuscitation” notices. We all know that disabled people sometimes did not receive access to critical care. We all know that young people with learning disabilities were disproportionately dying. I really think the real-world implications always have to be tested. This Bill is not an abstract exercise; it will land in a society that is rife with inequality.

Q It seems clear from an expert in European law that the human rights convention is covered by this legislation, so we have got some very good advice there. I would just like to confirm that, if we could, Dr Graham. Also, to all of you: could we have some positive things that we could put in the Bill to make it safer? We have been talking about the Bill but this is a practical session where we need to improve the Bill. First of all to Dr Graham.

Order. Can you ask through the Chair, and I will decide who can speak? We have four minutes left. I do not want to cut any of the witnesses off, so, with the greatest respect, can you leave the direction of the meeting to me, please? Dr Graham: I can confirm that it is my view and the view of many of my colleagues—many of my colleagues are experts of 40 or 50 years’ standing in this area—that there is no serious possibility that the Bill will breach the European convention on human rights or the rights under the Human Rights Act. That remains my view. Lord Sumption: It is also my own view. I was actually very surprised to see the contrary suggested. Baroness Falkner: Well, I suppose the contrary suggestion came from me. I can only repeat that there are several articles that we consider are engaged: 2, 3, 8, 9 and 14. But of course they have not been tested in court. Part of the consideration that Parliament has to give is that once the Bill becomes an Act, there will be an opportunity to test all of these human rights articles in court and we will get a more definitive ruling. Because so few jurisdictions have incorporated this kind of legislation, we do not have as clear a picture as we want. But of course the interpretation of Dr Graham on the European Court of Human Rights is correct—we agree with that.

Thank you. Fazilet Hadi—last minute. Fazilet Hadi: Very briefly, I cannot suggest any way in which this Bill could be strengthened. I come back to the point that that is because I feel that the society that it will land in is the thing that needs to change, not the Bill. At the moment, there is very little likelihood of that society becoming more equal, having better public services and having less health inequality in the next few years.

Thank you. That brings us to the end of the time allotted for the Committee to ask questions in this session. On behalf of the Committee, I thank the witnesses for their evidence and contributions. Thank you very much. Examination of Witnesses Toby Porter, Dr Hussain, Dr Neerkin and Sam Royston gave evidence.

16:00:00

We will now hear oral evidence from Toby Porter, the CEO of Hospice UK; Dr Jamilla Hussain, who is a clinical academic consultant in palliative care at Bradford teaching hospitals NHS trust; Dr Jane Neerkin, a consultant physician in palliative medicine; and Sam Royston, who is the executive director for policy and research at Marie Curie. For this session, we have until 5 pm. Could the witnesses please introduce themselves for the record? Toby Porter: Good afternoon. I am Toby Porter, the chief executive with Hospice UK. Dr Hussain: I am Jamilla Hussain. I am a palliative care consultant working in Bradford. I am sure people know that Bradford is quite an ethnically diverse population. It is also the fifth most income-deprived local authority area, where one in four people over 60 live in income-deprived households. Inequalities are part and parcel of my day-to-day clinical practice. I have not submitted written evidence, so I thought in my introduction I might give you a steer of what my focus is. I am also an academic focusing on inequalities at the end of life, and over the last few years I have really specialised on ethnic inequalities, including the important issue of racism in end-of-life care practice. My main point and focus is that the Bill will affect everyone in society.

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 Thank you all for coming. We have had a lot of discussion over the last day or so about eligibility. I think it was Hospice UK that said, in evidence to the Health and Social Care Committee, that pain in all circumstances could be alleviated. Do you believe that the way in which the Bill is framed captures those people correctly? For those people who are essentially beyond medical help and may be facing a painful end, and who want a different choice, is the eligibility criteria framed correctly? We will start with Mr Porter. 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 How would you seek to improve the Bill in order to make them eligible? 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.

Q I was interested to hear what you were saying about not all symptoms being controllable with palliative care. There is an argument that we do not have good enough palliative care, so we cannot bring in assisted dying. I think it may be a little spurious. What are your thoughts about the relationship between palliative care and assisted dying? That question can go to any of you. 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.

Q I would like to come to you, Dr Hussain, specifically on why you think ethnic minority people would be disproportionately affected when the law is the same for everyone. There will be capacity assessments. There will be two medical assessments. There will be a court review. If you think that is going to be an effect, what would you suggest we include in the Bill to safeguard those people? Dr Hussain: First, we need to understand the current context. We know already that people from ethnic minority groups and those who come from socioeconomically deprived backgrounds are less likely to access palliative care, they are less likely to say that the care that they have received at the end of life was good and they are more likely to have poor outcomes—that is, they are more likely to die in hospital and spend more time in hospital in the last year of life. What drives that are multiple reasons, but not least discrimination. We have heard about ableism, but racism is also a specific issue within palliative care. We did a survey, post-covid, of staff across the nation working in palliative care. More than 1,400 people responded. The vast majority—more than 80%—were white British, but 40% said that they had witnessed or experienced racism within the end-of-life care sector. For ethnic minority groups, that is much higher. That leads to mistrust. I work in Bradford. We have lots of patients who are ethnically diverse in the hospital. Almost every week, one of the first things I have to reassure patients about is that I cannot legally do anything to shorten their life. This is front and centre of the fear for those patients and we see it all the time. What happens when we add assisted dying into that context? I work deep within community groups; with not only ethnically diverse communities, but those who are socially disadvantaged. I have taken this Bill to them and they have made it really clear—this is not just one community, but several, and I am not speaking on my behalf, but on theirs—that they are really fearful because this is what happened to them in covid. It affected everyone, but it affected some communities disproportionately because our services are not equitable. That could profoundly affect their healthcare, and not only in terms of end-of-life care. They are saying, “We will not even come to hospital ourselves, because we are worried that this would happen.” This is not an academic or theoretical risk. We saw it happen in covid in Bradford. There were communities so worried that their loved ones were dying in hospital that they stayed at home and died earlier. It is not a theoretical risk. They also identified people within the community who they thought would have assisted dying but, invariably, without exception, every single one of those cases was from the most deprived and disadvantaged people in their community. With the 40-year-old woman who had lost her children, is sofa-surfing and an alcoholic, and had recently been diagnosed with cancer, they said, “She probably would want to go for it,” but that is because she cannot get the mental health and social care support she needs. I do not think it is clear. Would I have to safeguard that person and get her that support or, as these communities asked me, would the only thing on offer be assisted dying? It has really profound implications for these communities. We only have to look at covid and vaccine hesitancy. As you said, that was a brilliant intervention and highly effective, but it disproportionately impacted these communities. That is why my recommendations—I will put them in writing—are that we have not only to strengthen the Bill but to strengthen those conditions. I think it is manageable, but it takes a different kind of leadership. That is probably the key thing, but I genuinely think we can get there.

Q Mr Royston, I am interested in what you had to say about palliative care and poverty. A concern of people who have spoken to the Committee has been the impact of introducing assisted dying in an era when palliative care is so patchy. Often, someone’s finances and personal income are linked to the level of care they get. Can you explain the impact that concern about finances has on dying people, from your experience? Sam Royston: The impact on dying people can be deeply profound. I have spoken to people for whom it is difficult to even afford to put food on the table, and who are struggling to turn the heating on. There are people struggling to even power medical equipment in their home as a result of facing poverty at the end of life. Let us remember that, particularly for people of working age, there is a double pressure here. Not only can terminal illness come with additional costs because, for example, many people require their home to be kept warm and need to buy special food and so on and so forth. For many people, their income reduces as well as a result of the person who is terminally ill leaving employment, or their partner doing so in order to care for them. Those double pressures are pushing people living with terminal illness into poverty. Inevitably, that affects their view of the way in which they live their life and their quality of life as a whole. There are some basic things that need to be done to address this. For example, we pushed for a long time for people who are unfortunate enough to become terminally ill at working age to be entitled to receive a pensioner level of income. At the moment, if you have no other income, you can rely on receiving your normal working-age benefit entitlement, but having that pensioner level of income would provide an opportunity for retirement for those people who are unfortunate enough to become terminally ill in working age. So far, basically, it has been said that it is unaffordable. In the context of discussions about what needs to happen to improve the end-of-life experience for everyone, I think it is pretty critical that we do something big to address poverty at the end of life.

Q Sorry, Mr Royston, but I am coming back to you with a similar question. I do not think anyone on the Committee or, as Mr Porter mentioned, anyone who took part in our recent debate would disagree about the pretty awful state of palliative care at the moment. You are absolutely right to mention poverty and its impact on health and social outcomes. I am very sympathetic to the broader arguments you are making, but I want to direct us specifically to the Bill, because that is why we are here now. In your view, is the Bill problematic or otherwise, for some of the reasons you outlined? Will it fundamentally change any of the outcomes that you mentioned? I agree that we need to improve the situation regarding the number of people living in poverty, the state of palliative care and everything else, but what sort of change specifically do you think the Bill might make? Sam Royston: In the context of the Bill, I am a bit disappointed. From what I can see, there are two mentions of palliative care. One is a requirement in the initial discussion for a doctor to tell somebody what palliative care is available—not whether there should be any available palliative care, but whether it is available. That could be, “No, there is nothing available, I am afraid.” I think that is inadequate. The second reference is to having an assessment of the availability of palliative care after five years. I do not know why we are waiting five years after the Bill becomes an Act for an assessment of the adequacy of palliative care. We do not have such an assessment at the moment, and we absolutely need one. That is why we have recommended an additional clause that requires an assessment of the availability of palliative care, and a long-term funding strategy to enable that to be put in place. There are substantive things that could be done to the Bill to improve it in that regard.

Q I sympathise totally with what you are saying about palliative care, but the principle of assisted dying is the main thrust of what we are debating. Will the principle of assisted dying, should it be introduced, fundamentally change, positively or negatively, many of the things that you have been describing? Sam Royston: I have heard on occasion this idea that we are dealing with assisted dying, and palliative care is another issue. To be honest, I am a bit tired of the “jam tomorrow” argument that says, “We will sort this out today. Palliative care is important, but we will sort that out another time.” We need to get palliative care sorted out and improved right now, as part of the Bill, because they are fundamentally connected. This Bill is about choice. It is about choice at the end of life. If people cannot choose to access palliative care, they cannot make a free choice about the care and support that they receive. They cannot make a choice about whether they can get the pain relief that they need. They cannot make a choice, often, about where they would rather die. They cannot make a choice about who they have around them at the end of life. They cannot make those choices if they do not have access to proper palliative care and the support that they need. That is why I would say that the issue of palliative care is intrinsic to the Bill. The two are fundamentally connected. You cannot have one without the other.

Q I have a short final question. Is Marie Curie’s position basically that if palliative care does not improve, assisted dying should not be introduced in this country? Sam Royston: We are neutral on the question of whether assisted dying should be introduced. We are not neutral on the question of whether palliative care should be improved.

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

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

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

Order. If people want to intervene, can they please do so through the Chair? Otherwise, we will get into chaos. Could you please finish answering the question?

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

I remind Members that we are now halfway through and we have seven Members to go. We have already had six questions, and we have seven to go in the next half hour. I repeat that I do not want to interrupt our witnesses at the very end to stop the panel.

Q Dr Porter, we heard this morning from some colleagues from Australia, reflecting on assisted dying options five years after they was introduced there. I specifically asked them about the impact that had had on the palliative care sector and hospices. The Australian hospice body had done a review and said that there had been, if anything, an improvement in palliative care, and that that was linked to assisted dying. Do you have any reflections on that, based on the international experience of the hospice sector in places where assisted dying has been introduced? Toby Porter: That is a very good question. To make a quick framing point, so much of the Bill is about individual choice and individual opinion. Potential patients would have the choice to access an assisted death, and individual physicians would have the right to opt out of any involvement, and so on. There is this idea that your individual opinion guides everything, but with a hospice charity the opposite is true. As many Members will know because of their own work as trustees, the trustees and leadership of a hospice team are required to put personal opinion and interest to one side and always act in the best interest of the charity’s beneficiaries, who are the population. That is a really important point, because this debate has, if you like, happened to the hospice sector. The hospice sector in the UK has a job of immense complexity: balancing the needs and wishes of the patient with the duty of care to its own staff, in a context of financial fragility. What you said about other jurisdictions is true, and it triangulates with what I have heard about Australia. The Australian introduction was accompanied by a conscious decision by the Government to invest more in palliative care, which hospices have noted and appreciated. In New Zealand, it is probably too early to say, but its hospice sector, unlike the hospice sector in the UK, largely campaigned against a change in the law. So it is slightly on the periphery, if you like. It is very complicated. May I just list the three major concerns of the hospice sector, or would that take too long?

I think it would be best not to at this stage. Do you have anything to add to that, Mr Atkinson?

No.

Q My question is for Toby Porter, and it is probably quite timely. What are the risks and impact for the hospice sector if assisted dying becomes legal? Can you talk broadly about the implications, touching on the impact on the workforce and patients? Toby Porter: In England and Wales, there are about 190 hospice charities and probably about 16,000 care staff, who will represent every different opinion on the spectrum. Hospice UK and most hospices have a position of no collective view on whether the law should change. To summarise three impact areas, the first and most important one—this is why our written evidence stressed the need to sustain the public conversation about death and dying that this debate has started—is that, if people are made more comfortable, there is a real opportunity to talk about death and dying, as well as what services are available for everybody, including those who may want an assisted death. There is a real opportunity to improve palliative care, because most people in palliative and hospice care think that the golden thread is increasing people’s knowledge, ability and willingness to talk about what is happening to them and what services can help them. Conversely, there is a risk. Modern palliative medicine and hospice care have for 30 or 40 years been working very hard to get people to access palliative care early—as soon as possible after diagnosis of a life-limiting condition. The language of, “I’m going to fight this”, “I’m going to defeat this cancer”, “I’m going to battle” or “I’m stronger than this” shows that we have a whole culture that works against that early access. Even today, people still sometimes associate accessing hospice care with admitting defeat and going too early. If hospices were involved in assisted dying, there is a theoretical risk that that would just reinforce an inaccurate perception about hospice and palliative care: the myth that you are helped along your way by doctors in hospices and hospitals. That is one risk. More briefly, the second risk relates to the duty of care. What do you need for hospice and palliative care services? You need adequate resourcing, which means staff and finances. In terms of staff, the real fragility in the hospice and palliative care sector is a shortage of clinical staff—that is shared nationally with the NHS and other healthcare providers. You will know from Sarah Cox’s evidence that the majority of palliative care consultants hold views against assisted dying, many of them very strongly. If the consultants felt, for example, that they could not keep their distance from assisted dying in a 12-bed hospice unit in the way they could in an 800-bed hospital, you could very easily see that if this was not done properly and the consultants deserted the hospice sector, you could no longer offer the specialist care that is so important to the Minister, the NHS and every health and social care provider. Thirdly, at the moment, every hospice operates with not just the consent, but the active financial support of its local community. This is, perfectly legitimately, a controversial issue, and there are very strong feelings on both sides. At the moment, we depend on charity to fund about 65% or 70%. There will be people who would stop funding hospices because they did not offer this service, if it became legal, and there will be people—this has already happened—who would stop funding hospices if they did. Those are the main strategic and operational challenges of the hospice sector. I hope you will think about how they might be mitigated in your deliberations.

Q I have a quick follow-up. What you said about palliative staff generally being against assisted dying was very interesting. Briefly, what are the drivers or key reasons for that? Toby Porter: I am conscious that two palliative care doctors are sitting to my left, but I would say that it is quite constitutional. The World Health Organisation definition of palliative care talks about neither hastening nor prolonging death. There tend to be very strong feelings about that, but others might be better placed to answer. Dr Hussain: I would echo what Sarah Cox said yesterday. For the vast majority, it is the worry about how it impacts all those other people. In principle, the majority of people I have spoken to—we see the patients who want it and would benefit. It is everyone else and the Pandora’s box of risk we are opening that is mainly our worry. Dr Neerkin: People are worried that palliative care is going to lose funding based on this—that is one aspect. There was an interesting article in The Lancet last month by my colleague Libby Sallnow about the risks. Palliative care in the UK is gold standard relative to the rest of the world. If we start to change what we are doing here—introduce assisted dying and say that that is potentially a preference—that may therefore be replicated elsewhere without implementing palliative care. Those are some of the worries that people have, but that is not to say that, individually, people are not supportive.

Q Following on from what Mr Porter said about the provision of hospices, we are blessed with some wonderful hospices in north London that provide fantastic facilities. I agree with Mr Royston about the need for an assessment of palliative care funding right now; that is important. The fact about the funding is quite shocking. One of the local hospices has something that has been nicknamed a “death café”, where people get to discuss the end of life in a setting with friends and family members. On the issue of ethnic minorities not accessing services, what are your thoughts on being able to have settings where they can discuss different options at the end of care, get the support they need and make properly informed choices about the end of life? That question is to the whole panel.

Order. I repeat that we have about 15 minutes left and four people left to ask questions, plus the previous question. Could hon. Members appoint who might answer the question? I do not want to cut off witnesses right at the end; it would be rude to do so. Who wants to take that question? Dr Hussain: I will take that one. As I have said, in Bradford I have been going into the communities and meeting them in community groups where they already meet—it is their safe space. Over the last three to four years, we have done a series of workshops just opening it up: “What is death and dying like for you?” We have done that with the Pakistani women’s group in particular. We have recently moved on to go, “What stuff do you want to know about?” We had a series of four workshops where they could choose anything, so they talked about stuff such as religion and what services are available—none of them knew what services we had, which is shocking. But the workshop that they all voted for the most—and it was packed—was on benefits. These women are structurally so disadvantaged; they were asking about pensions and so we had benefits advisers come in. The women asked, “Please could we set this up monthly, for you to come speak to us and inform us?”, but it was a “No, we don’t have capacity.” I have been asking for these workshops to be scaled up across Bradford. What do I get told? That it is not the hospices’ role, not the hospital’s, not the integrated care board’s. I have gone and presented my data and the feasibility with “This is how we can do it, this works really well”, but everyone says it is not their job. That is why I think the public health approach going into communities requires a completely different approach—it needs people who are seen as trustworthy and it requires us to be trustworthy, that is, we go in there, genuinely listen, and do stuff about the stuff talked about. I have done it and that is where the trust comes from. It requires core funding, and the hospices cannot stretch to that—that is a huge issue. I have done it with a few groups, and to do that at scale in a place like Bradford—it absolutely has all the assets to do this—the funding has to happen. That is absolutely needed. We need to have that reciprocity, genuinely going in there and saying, “We’re here to hear, and we will act on that.” Sam Royston: I agree with everything Jamilla says, as always. There are two connected issues here. One is about better whole-community conversations about death and dying, and death cafés are a fantastic example of that. I also think, incidentally, we need much better conversations about death, dying and bereavement in schools. We have worked recently with a number of other charities on getting bereavement education on the national curriculum, which I think would be a fantastic step forward. We need better whole-society conversations about death, dying and bereavement. However, there is another conversation, which is about practical discussions about people’s preferences at the end of life—advance care planning conversations. We need to get much better at them—better at them happening and particularly better at them being acted on. We did a survey recently on why people do not have those conversations about their cares and wishes for their end-of-life preferences, and the key reason people said they did not have them was because they felt they would not be acted on. So we need to make sure that we are thinking about—and this includes ensuring access to palliative care support—how to enable those conversations, when they happen, to be acted on. We also, incidentally—this is a bit of a technical point—need to make sure that those preferences are shared across services. There is very poor data sharing at the moment; ambulance services and the hospice needs to have that, and the GP and hospital need to know what people’s preferences are. We need to make sure that everyone involved in the care of that person is able to respond to those preferences.

Q Thank you to all of you and for what you do. I will direct my question to Dr Jamilla—it is so lovely to hear so much about Bradford. I want to talk about what Dr Rachel Clarke said yesterday. She said that when patients had begged her to end their life, it was not because of the cancer but because they had not received proper palliative care. From your research and experience, would you say that ethnic minorities or those from socioeconomically deprived backgrounds do not always receive good palliative care? What are the dangers in this Bill for you? Dr Hussain: The data is quite clear: ethnic minority groups do not have good access to palliative care services. We have been talking today about increasing the access to palliative care, but we need culturally competent and safe palliative care to meet the needs of those people, particularly those who are most disadvantaged. We do not just need to increase the offer; it also has to meet the needs of those who are most structurally disadvantaged. In Bradford, I have spent three years trying to collect all the data so that I can understand the inequalities. But in our specialist palliative care team we reduce the inequalities for ethnic minorities, because we see them in A&E and the hospital, and we go to where they are at. The risk for somewhere like Bradford, where we are doing okay—we have a long way to go—is that the Bill creates a fear in those communities. I have been going out and trying to build trust—being trustworthy—and they made it really clear to me by saying, “We trust you; we don’t trust the system. So if I came into hospital, even if your team was there, I would be really scared to access palliative care.” In a system that is doing okay, we are now adding this new risk. We need to mitigate against that. The public health approach is really important, as is going into those communities. But we got a lot wrong for those communities post-covid, and the reason we got a lot wrong was that we did not have representation from those groups at the decision-making table at the most senior level. The people who were represented were consulted. We need that representation. I think we can do this, but the change we need is that at the most senior level we need representation from those communities. They need to have the power to make decisions. It is those people, who are going to be most harmed by this, who should be deciding what “safe” is. They should be the ones who decide if we have reached that safety level, otherwise we are going to see the same things that we saw in covid.

Q Building on that, Chris Whitty and the British Medical Association said, from an ethnic minorities and reflection point of view, that the Mental Capacity Act 2005 and safeguarding training are fit for purpose. We know that we do not have a workforce that is reflective of the communities it serves and that we do not have representation at high levels, so in your clinical experience, for disadvantaged groups, do you think the training on capacity and coercion is fit for purpose?

Order. I am sorry to do this but we have eight minutes left, and Members have three questions. This is the fourth question, so I ask those who answer to be as concise as they can, otherwise we will not get through the questions. Dr Hussain: I think I have touched on that before. From my experience, there are discrepancies—it is not like six doctors always come out with the same answer. I have the utmost respect for Professor Chris Whitty; I know that we was not saying that this is the case across the board. We see those discrepancies, and with those vulnerable groups—ethnic minorities and those from poor or disadvantaged backgrounds—we have to spend even more time to get to understand it. So there are even more discrepancies for those groups. Ultimately, I do not think the Mental Capacity Act and safeguarding training are fit for purpose. For something like assisted dying, we need a higher bar—we need to reduce the variability in practice. I think that is a real challenge, but it is doable if we can get everyone on the same page.

Q I would like to direct my question to Dr Neerkin. We have heard from lots of different jurisdictions where assisted dying is commonplace now. In those areas, the actual uptake is very small. That is in places where they have a lot less in the way of safeguards than we do in this Bill. Can you comment on the fact that we are talking about a very small group of people for whom palliative care would not be enough anyway? This option might give those people peace of mind and enable them to have a good period of life while they have it, and then choose to leave on their terms. The point I am trying to get to is, we keep talking about big populations and groups, but in your professional experience, how wide or narrow does the Bill need to be? Do the safeguards in it not already restrict it to a very small group of people whose needs would not necessarily be met by palliative care? Dr Neerkin: I agree. People who request assisted dying are a tiny proportion—we see that in other jurisdictions. Of those that request it, the number that go through with it is even smaller. As I said earlier, people want to live—people do not want to die. But what people do not want to have is a prolonged death where they are suffering—they want control. In my experience, the number of those that actually really wish for it, ask for it, and would potentially go through with it, is small.

Q This is a question for Dr Neerkin. That was extremely helpful. We know that Tōtara hospice in New Zealand—one of the largest hospices there—has said that it does not think that assisted dying and palliative care are counter to each other, and that a system can work where they are running side by side. Can you touch on, first, any evidence we have from countries that have adopted assisted dying that demonstrates that marginalised groups are seeking it much more regularly than those with more economic resources; and, secondly, choice and the ability for assisted dying to give greater dignity to individuals seeking that choice? Dr Neerkin: Some of that question, at least the first part, would have been better posed to the people from Australia and America this morning, who probably have more details on it. I have looked extensively at the data from Oregon, and there is not a skew towards the elderly, the disabled, people of different minorities or people in poverty. I do not think there is a skew. You actually tend to find that people are younger and from wealthier and more educated backgrounds. Looking at it from that side of things, they are probably more knowledgeable in that background. Could you repeat the second part of your question?

Q The second part of my question was this. You talked very eloquently, as did Professor Tom Shakespeare this morning, about the Bill enabling choice for those who want it, particularly those who believe it would give them a more dignified death, but could you expand on how it provides that element of dignity? Dr Neerkin: Part of it is about choice and control, which I mentioned before. People are very vulnerable. We have heard a lot about vulnerability, but not many people have defined what vulnerability in a dying person is. I think for a lot of people it is about that total loss of control and loss of self and who they are—that they are just another number. For them, it is about trying to regain some of that control and autonomy and being able to voice for themselves what they want. That is what I tend to see that people want back at the end of life.

This will be the last question for today.

Q Okay, very quickly, from what we have heard from you today, it is clear that the interface of assisted suicide, palliative care and NHS care generally in social care and hospices is really problematic and complicated. If we are going to do this, should we not just take it out of healthcare altogether? Would you not feel safer and happier if this was something done in independent clinics and not part of hospice care or the NHS, so that GPs would not have to recommend it? Toby Porter: There are certainly many people on hospice boards and in hospice leadership and medical teams who will find it very overwhelming to deal with the complexity of exactly how they position themselves and their service. They would be balancing obligations towards a community who might be in favour with the duty of care towards a clinical workforce who might be against, because of the risks that I spelled out. Obviously one choice facing members is that you remove it from the health and care system, and therefore those operational dilemmas are removed from individual institutions. Then the onus is on you to define how a service that would sit outside the national health system would operate. But I think it is important to counter that by saying that hospices evolved out of the community. They exist because communities wanted better deaths. In the end, it is the job of institutions to evolve to fit the values and laws of society as they evolve, rather than vice versa. If, as Professor Whitty said yesterday, it is the will of society, expressed through yourselves, that this change takes place and is delivered as part of the health and social care system, then I have no doubt that the wonderful resources that exist in the governance and staffing of the hospice sector will be deployed to find a way that tries to mitigate those risks and do their best for their supporters, and in particular patients and staff.

That brings us to the end of the time allotted for the Committee to ask questions. I would like to thank our witnesses on behalf of the Committee for their evidence. Witnesses can, if they want, follow up in writing. We are more than happy to hear anything else they have to say. Ordered, That further consideration be now adjourned. —(Kit Malthouse.)

17:00:00

Written evidence reported to the House

TIAB103 Together for Short Lives

TIAB104 The Other Half

TIAB105 Regional Palliative Medicine Group

TIAB106 Yogi Amin

TIAB107 Professor Emyr Lewis, Emeritus Professor, Aberystwyth University

TIAB108 Royal College of General Practitioners

TIAB109 Complex Life and Death Decisions Group, King’s College London