Public Bill Committees

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

Witnesses

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

Wednesday 29 January 2025

(Afternoon)

[Peter Dowd in the Chair]

Terminally Ill Adults (End of Life) Bill

Examination of Witnesses

Richard Robinson, Dr Alexandra Mullock, Professor Allan House and Professor Aneez Esmail gave evidence.

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.

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.

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.)

Adjourned till Thursday 30 January at half past Eleven o’clock.

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

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

Witnesses

Dr Greg Mewett, specialist palliative care physician and member of the Victoria State Government’s Voluntary Assisted Dying Implementation Taskforce

Dr Clare Fellingham, deputy director of clinical services, Royal Perth Hospital, Western Australia

Dr Cam McLaren, oncologist and founder of Voluntary Assisted Dying Australia and New Zealand

Professor Tom Shakespeare CBE FBA, disability rights academic, bioethicist and social scientist

Dr Miro Griffiths, disability studies scholar and researcher, Leeds University

Yogi Amin, national head of public law and human rights, Irwin Mitchell

Chelsea Roff, founder of Eat Breathe Thrive

Public Bill Committee

Wednesday 29 January 2025

(Morning)

[Sir Roger Gale in the Chair]

Terminally Ill Adults (End of Life) Bill

Examination of Witnesses

Dr Greg Mewett, Dr Clare Fellingham and Dr Cam McLaren gave evidence.

Good morning, ladies and gentlemen. We are now sitting in public and proceedings are being broadcast. I remind Members to switch off electronic devices.

We will hear first this morning from three witnesses, all of whom join us online from Australia, where it is either early or late evening: Dr Greg Mewett, a specialist palliative care physician; Dr Clare Fellingham, deputy director of medical services for Royal Perth hospital in Western Australia; and Dr Cam McLaren, an oncologist in Australia and New Zealand. Will Members please keep questions as short as possible? We have until 10.25 am for this session, so we have very limited time.

Dr Mewett, would you be kind enough to introduce yourself and make a very brief opening comment?

Dr Mewett: I am Greg Mewett. I am a palliative care physician of many years’ standing. I live in Ballarat in central Victoria. I have been involved as a palliative care physician over many years and became involved in the Voluntary Assisted Dying Implementation Taskforce, which was charged with bringing the enactment of legislation into practice. I subsequently incorporated voluntary assisted dying into my specialist palliative care practice, and more recently have been appointed as a member of the Voluntary Assisted Dying Review Board in Victoria. I am here to assist in whatever way Committee members feel I can help.

The Committee is deeply grateful to you. Dr Fellingham.

Dr Fellingham: My name is Dr Clare Fellingham. I am originally from the UK. I now live and work in Western Australia as a consultant anaesthetist. I also have a clinical fellowship in palliative care, and I am due to complete a master of bioethics—the study of applied ethics—this year. I chair our regional clinical ethical committee. I led the clinical implementation of voluntary assisted dying across my health service in 2021 and then became a voluntary assisted dying practitioner. I was a high volume practitioner for two years, and I have recently scaled that back to work more with VAD Australia and New Zealand, which is the peak body that Dr Cam McLaren set up to try to represent and promote assisted dying throughout Australia and New Zealand.

I would like to contribute anything that I can, from a multifaceted position but with lots of lived experience in this space. I begin by stressing to the Committee that the law you are proposing only applies to people who are terminally ill. It is exactly the same as the laws that apply across Australia and New Zealand and very unlike the more permissive models that exist in Europe and Canada. It is so important to keep that in sharp focus. We are talking about giving dying people who do not have a choice, a choice, but it is not a choice between—

I am sure we will come back to that. Dr McLaren.

Dr McLaren: I am Dr Cam McLaren. I am a medical oncologist and an early adopter of voluntary assisted dying. I was not involved with the campaigning for voluntary assisted dying. On the eve of its introduction in Victoria, I did the training thinking that it was just an extension or the next step in patient centred care, as this was a patient led adjustment in our legislation. In Victoria, our law requires a specialist in the area of disease that the patient has to be one of the two assessing doctors, and due to the low uptake among my peers, I became quite exposed to this. I have been involved in over 300 cases of application for voluntary assisted dying, and through that experience have contributed to the development and implementation of voluntary assisted dying laws in other states of Australia and also in New Zealand. I have spoken on the Isle of Man and at the World Cancer Congress in Switzerland. I am a founder of Voluntary Assisted Dying Australia and New Zealand, where I saw a space to improve the quality and safety of the provision of voluntary assisted dying care from a provider perspective. Thank you very much for having me.

Colleagues will have noticed that there is a slight delay on the line. Take account of it when asking questions and ask them briefly, please.

Q 157 I am keen to hear about the training, education and clinical supervision you have in place for assisted dying. Perhaps I will address that to Dr Fellingham, but I am sure you could all answer.

Dr Fellingham: Certainly. The training is very stringently developed, and very rigorously tested. Our management training practice, which is required of all doctors who want to practice assisted dying, was developed by our colleagues in the Australian Centre for Health Law Research at the Queensland University of Technology. It drew on extensive research that the group had conducted around the world to create an online training package that takes at least a day to complete and covers a huge amount of things that are of great concern. Not unsurpris ingly, it includes things like how to assess capacity, how to detect coercion, how to assess for voluntariness, and how to determine the various different eligibility criteria that apply in our Western Australian law.

To be able to access that training and become a voluntary assisted dying practitioner, a person already has to be a doctor of quite some standing in their own specialty. They have to be a consultant in a specialty with at least one year of full time practice under their belt, or a general practitioner with at least 10 years of broad experience. We are not talking about junior doctors being able to offer this; we are talking about doctors of significant clinical standing with a very broad range of patient experiences. They put themselves forwards and do that training, and then that training has to be refreshed and updated every three years.

I have five hospitals in my health network, and together with my colleagues I developed a very comprehensive package of training, education and awareness that is tailored for people who may have a role in this at various different levels, from a nurse on the ward all the way through to someone who actively taking part in the process. A very wide range of documents and training packages have also been developed by our Department of Health. In addition, all practitioners who work in this space are invited to become members of our community of practice, where we share peer education and experiences. We also have guest speakers from national and international viewpoints to continue to educate us as a group, and to ensure that our practice is consistent and in line with local and international standards.

Do either of the other witnesses want to come in on that?

Dr McLaren: When we started this in Victoria, we saw a bit of a gap with the implementation. A lot of the education was surrounding the legalities of providing an assessment service in a way that conformed with the legislation, rather than that focused on the clinical skills and applications. I am quite proud of the role that we have had in rolling that out, in providing that peer experience, and in focusing more on some of the clinical skills that apply within a VAD context.

Q I have a couple of questions. Dr Fellingham, Victoria is quite a rural state and I imagine there are difficulties reaching all parts of it. Am I right that a state wide pharmacy service that delivers assisted dying drugs across the whole state has been set up, but there is no comparable service for the delivery of pain reduction?

Dr Fellingham: A point of clarification: I work in Western Australia, rather than Victoria, but I can give you a view for Western Australia, which is significantly larger, so the problem you have alluded to is much more complicated. Would you like me to speak about the Western Australian context?

I was talking about southern Australia, in particular. That is fine; we can move on. Thank you.

Dr McLaren: I can speak to the Victoria question, if you prefer. To answer your question, we have a state wide service that supplies the medication across the state. Medication for pain relief is available through standard pharmacy access, so there are no barriers to accessing medication for palliative purposes in rural Australia. It is quite hard to get voluntary assisted dying medication dispensed to Mildura, which is many hours away from the single state pharmacy, so access is more difficult for voluntary assisted dying than for palliative medication.

Q Thank you. The Australian and British media reported the tragic story of Cyril Tooze, an elderly and terminally ill 84-year old man in southern Australia, who requested voluntary assisted dying. Mr Tooze stated that he was applying for voluntary assisted dying after waiting nearly a year for the state government to implement a care and housing package for him. He died while waiting for the application process to end. How much does social detriment influence requests for voluntary assisted dying? Please speak from your own experience and about published data.

Dr Mewett: From a palliative care perspective, like Cam and Clare, I have been involved in assessing and having discussions with many, many patients who have requested assisted dying. These patients come from a whole range of socioeconomic backgrounds. In fact, if anything, they tend to come from a perhaps slightly higher, more well educated background. There is no evidence in our jurisdiction of Victoria, where we have had five and a half years’ experience, that people who are underprivileged, less educated or vulnerable in some other way have readier access to or apply more for VAD.

The case you alluded to, like many cases that are reported from Canada, is certainly tragic in its own way, but such cases are an absolute minority compared with patients who are genuinely determined to have a choice about the way they die and when. Those are separate issues: one is a social welfare issue, and the other is a VAD issue. A patient such as that would not be found eligible, unless he was eligible under the strict criteria that apply in the state in which he lived.

Dr McLaren: As Greg touched on there, when that gentleman applied for voluntary assisted dying, that may have been one of his drivers, but it certainly would not have made him eligible. He did not access voluntary assisted dying, so the system worked. We do see higher socioeconomic status patients applying for voluntary assisted dying. That is evidenced in our Voluntary Assisted Dying Review Board reports, which show a greater proportion of people with higher levels of education. That data is freely available through the Victoria Government website.

Dr Fellingham, you had your hand up.

Dr Fellingham: Ms Shah asked for some evidence, and I have just looked this up. Our Voluntary Assisted Dying Board reports from Western Australia are also freely available, publicly searchable documents. Each year, the board asks the patients’ reasons for accessing voluntary assisted dying. In order of commonality, the only ones over 50% are “Loss of dignity, or concern about it…Loss of autonomy, or concern about it”, and “Less able to engage in activities making life enjoyable, or concern about it”.

What that reflects to me is that the type of people who seek access to assisted dying are those who tend to be, as my colleagues said, more health literate and more socioeconomically advantaged than your average healthcare consumer, and people for whom the existential reasons that upset them about their disease process are the primary drivers for seeking access to voluntary assisted dying. It is very rarely the absence of service provision or because they feel that they do not have any other choice.

Q Looking ahead to our next panel, are you aware of any serious concerns being expressed by disabled people about the Australian assisted dying laws and any risks they might pose to this group? It would be very helpful to hear any recommendations you have with regard to building safeguards into the law that we are scrutinising.

Dr McLaren: Throughout the roll out of the voluntary assisted dying legislative process in the other states that I have been involved with across Australia, the main concern that has come from disability organisations is that they do not want to be found eligible for the sole reason of their disability, and that is involved in all our legislation—that people are not eligible purely on the basis of that. They also voice a very strong concern that they do not want to be found ineligible based on their disability either. They would like to have access to this in the event that they have a disability but then also develop a terminal illness. That has been a very strong voice throughout all the debates in Australia and New Zealand.

Dr Mewett: I wanted to reiterate that, of the 13 of us who were representing various people on the implementation taskforce in Victoria, we had one disability advocate who was a strong voice in ensuring that the laws were not discriminatory in any way against patients with any degree of disability. I would always indicate that this is a voluntary assisted dying programme. The word “voluntary” is not used often enough in this space.

Dr Fellingham, do you wish to add to that?

Dr Fellingham: Just briefly—I will go back to the point that I was making in my introduction. It is extremely important to keep in very sharp focus that the law you are proposing in the UK is similar to the laws that exist in Australia and New Zealand and most of the laws in the United States, but it only applies to people who are terminally ill, and therefore people who only have a primary disability, a primary mental health condition, a primary dementing condition or a non terminal condition such as anorexia or a whole host of other conditions, who are found eligible in the more permissive laws, simply would not be able to be found eligible. It is really, really important to keep it in very sharp focus that this law is only for terminally ill people.

Q Thank you. That is extremely helpful. Clause 2(3)(a) and 2(3)(b) cover the point that you made about those groups, stating: “For the avoidance of doubt, a person is not to be considered to be terminally ill”

just by those statuses.

I am very interested to hear about the implementation taskforce. I am personally keen that if the Bill passes into law, we monitor the impact on disabled people on an ongoing basis. Do you have any recommendations for how we can ensure that disabled people have a strong voice in that process, to keep the provisions in check and understand the impact, if any, on the culture within the NHS and other services?

Dr Mewett: Only that if there is an implementation taskforce—most legislation requires an implementation period; in our case, it was 18 months—a strong disability advocate is involved in it.

Dr McLaren: It would be to plant the seed of funding for research throughout the implementation and early stages of voluntary assisted dying legislation. Conducting qualitative research particularly in this area would be very revealing, to understand not only everyone’s reasons for applying for voluntary assisted dying but also those of marginalised groups and whether there are any other factors influencing their decisions.

That also extends to research conducted in culturally and linguistically diverse populations. We have a concern about health awareness, and particularly that what we affectionately call our gag clause—whereby our medical practitioners are not able to initiate conversations with patients about voluntary assisted dying—unfairly disadvantages people from culturally and linguistically diverse populations and those who have lower levels of health literacy in accessing information about the care available to them and their health options. We feel that that comes mainly from discussions with general practitioners. Not allowing those general practitioners to discuss the options with them certainly does not do them any favours.

Dr Fellingham: Both my colleagues have made excellent points that I was going to make. I think they have covered it very well.

Q Yesterday, we heard from some clinicians from the USA, who outlined how they have reviewed the scheme in practice. They said that their waiting period between the two clinician appointments has been reduced from 14 days to 48 hours, and that in some cases the second clinician has been removed and replaced by a nurse practitioner. Have you undertaken a similar review? Have you made any changes as a result?

Dr McLaren: We are undergoing our review at the moment. It was meant to commence after the first five years of operation of the Voluntary Assisted Dying Act in Victoria. That review has yet to be tabled or published. Certainly, the recommendations that we have submitted to it involve reducing or removing the so called grace period, or waiting period. My experience, and that of an almost homogeneous group of practitioners, is that patients serve their own lock out periods, grace periods and periods of reflection, as I believe you have called them, before applying. Subsequently, there are several logistical pauses throughout the process, which also instigate their own grace periods. The addition of further periods for reflection is, I think, superfluous and unnecessary.

Secondary to that, in all our Bills and Acts, we have an ability to bypass those waiting periods. Forgive me if I am wrong, but I did not see the capability to bypass any of those in your current Bill. If the person has a prognosis of less than seven days, they should be able to be expedited and not serve that time. I do not see the purpose of putting extra time on these people to apply for this.

I always say that people do not know that they have six months to live until they have six weeks to live. We as oncologists do not know that either. In a matter of one CT scan, we can change a person’s prognosis from 18 months to three months. All of a sudden, they start thinking about how they see their life ending, and then they have to engage in a process of application. Out of that three month period, it might take a month to apply. My recommendation has always been to increase the prognostic eligibility criteria from six months to 12 months and to remove waiting periods, which patients will place on themselves regardless of the legislative requirements.

Dr Mewett, you are nodding.

Dr Mewett: Yes—not nodding off, you will be pleased to know.

It is not that late yet.

Dr Mewett: As I am a member of the Victorian VAD review board, as well as being here as a palliative care practitioner, I want to give you an insight. The review board is now a statutory body under the Victorian Act. We are in the process of finalising a number of recommendations to our Health Minister to make some adjustments to the law. I am not at liberty to go into detail, but many of those things, such as the gag clause and the waiting period, are really up for challenge. They have been shown not to be safeguards but, in fact, impediments and barriers to equitable and compassionate access to the scheme.

Dr Fellingham: I agree with Dr Mewett. They seem like a good idea, but they do tend to be barriers more than safeguards.

Q Could I clarify whether there is also a review of keeping two clinicians in the process? We heard yesterday that that is not the case elsewhere.

Dr Mewett: One has to understand that although there are some broad similarities, there are a number of differences state by state, and now the Australian Capital Territory has legislation. In the ACT, they have passed legislation, although it has yet to come into practice, whereby one of the two assessing practitioners could be a suitably qualified nurse practitioner. In all the other states of Australia, each of the assessing practitioners has to be medically trained. Different states have different requirements. There is also, in some states, the ability for a suitably qualified nurse practitioner to be the administering practitioner in the case of practitioner administered voluntary assisted dying.

For the benefit of our guests, the next questioner, Stephen Kinnock, is our Health Minister.

Q I have a specific question about the period between the legislation passing in your Parliament and the commencement of its provisions and the implementation of voluntary assisted dying. Can you say a little more about what had to be done in that period: the institutional arrangements that were needed between the Act’s passage and its commencement, and the training, capacity building and practical measures that you had to put in place? Did you do that from a standing start, so that in that 18-month period you went from having no training and no institutional set up to being ready to take the system forward?

Dr Fellingham: Our law was passed on 19 December 2019 and came into effect on 1 July 2021. Ostensibly we had an 18-month period, but of course something fairly dramatic in health happened in 2020. Despite that, what happened at Department of Health level began first. The Department of Health set up an implementation leadership team and gathered specialists together from all across Western Australia in various different aspects. They had eight different workstreams looking at the eight different parts of the Act that they had to operationalise—the pharmacology, the substance and what that was going to look like, the doses and how it was going to be administered, the set up of the pharmacy, and things like that. Each of those eight workstreams worked everything out at a Department of Health level.

Approximately six months before the law was enacted—on reflection, that was probably not long enough, but covid was very much complicating everything at the time—they set up a working group with the clinical leads in the various health service provider organisations. We were then tasked with taking that broad overview and turning it into a service at the point of delivery, on the understanding that we understood the nuances and expectations of the different hospitals and health systems in which we operated.

I will not lie: it was an enormous task. I leant very heavily on our wonderful Victorian colleagues who had gone first. I do not know what I would have done if I had been the first to pave the way. Subsequently, I have been able to offer that level of assistance to each of the other states and territories that have gone after Western Australia, and then of course to the UK, Scotland and Jersey, which I have been working with quite a lot. There is a wonderful international, collaborative sense of information sharing and wanting to get this right, learning from experience and not reinventing the wheel.

The vast majority of the laws that apply across the whole of Australia and New Zealand are quite similar, and they are similar to what you are planning to legislate for in the United Kingdom. A lot of fantastic groundwork has been laid already, and it can be done even in a challenging healthcare context, like covid or our resource limitations.

Thank you very much for that very comprehensive answer. Is there anything that our other guests would like to add?

Dr Mewett: As I was on the very first implementation taskforce, running blind, I probably could not add much more, except to say that it can be done. One has to focus on the readiness of practitioners, the readiness of health services, the readiness of the population and a whole range of other issues, including the pharmacy service. We have a state wide care navigator service, which assists patients and doctors in the space. We had to set up a lot of services, and that gave us the time to do so. It was very successful and very challenging, but fortunately we did not have covid in our way.

Q I am very grateful for your evidence; it is really useful. I want to state, for the record and for information, that we have before us today three professionals from Australia, all of whom support the laws in that country, and that we heard yesterday from two American doctors, who were also supportive of assisted suicide laws, even though in both countries there are many doctors who oppose what is happening. I regret that we are not hearing evidence from them, but it is very helpful to have your input.

Dr Fellingham, I was interested in your point about the distinction between the Australian model and the model in Canada and elsewhere. You are suggesting that most people who seek assisted death do so for what I think you called “existential reasons”. It is certainly not because of an absence of care, although we do see evidence of that in many countries. Can you expand on why you think it is so important that we have the terminally ill definition in the Bill, rather than recognising pain and suffering as the reason for seeking assisted dying, when I think most of the public who support a change in the law do so because they recognise that many people would naturally want to avoid pain and suffering? Yesterday, we heard from people who said that that is the right reason and that we should write that into the law. Why should we not do that?

Dr Fellingham: That is a very good question and I am grateful that you have asked it. We absolutely have to keep at front and centre that pain and suffering are primary drivers for people seeking access to relief of suffering, whether that is at the end of life or in any interaction that they have with healthcare providers. I speak to remind you that these laws apply to terminally ill people, because I feel that that is a lot easier for us to understand and get our heads around, but it does not detract from the fact that suffering can be a feature of non terminal illnesses. There are people who can suffer terribly for very long periods of time—dementia being a clear example, but one that would be incredibly challenging to legislate for at this early stage.

What is interesting about the parallels you draw between pain and suffering is that it is a quite common conception that pain is suffering and suffering is pain, and that people seek access to relief of suffering at the end of life because it is the physical symptoms that are the most debilitating. Of course, the physical symptoms can be horrendous—pain, nausea, vomiting, anorexia; there are a multitude—but they are symptoms that we tend to be really quite good at treating. We have a whole range of medications in our palliative care spectrum that are very good at treating those physical symptoms, so it is quite rare that people prioritise those when thinking about this.

But suffering is subjective and it is context dependent. What suffering is to me might be completely different from what it is to you, even if we are suffering from what looks to be, from the outside, the same disease. Suffering and distress—the thing that makes us human: the existential overlay of our own interaction with the world and how that is impacted by our disease process—is an incredibly personal journey and one that is extremely challenging to palliate, and it is very, very distressing for patients, their families and their practitioners if we cannot support people who are suffering at the end of life. Does that answer your question?

Q It does, very helpfully. Can I come back to you quickly? You point out that to suffer is essentially a subjective experience, so it is very difficult for somebody from the outside to determine whether somebody else is suffering to a certain threshold. By that reasoning, it should simply be the case that people who feel that they are suffering intolerably should be eligible. Why do you not think that that is what we should have in the law?

Dr Fellingham: In our law, in Western Australia, one of our eligibility criteria is that a person is suffering intolerably, in a manner that they consider intolerable, and that we have taken all reasonable steps to alleviate. The important thing about suffering is that it is a personal experience. It is not mine to judge as a clinician; it is mine to delicately and expertly tease out of a patient and to attempt to mitigate and treat to the best of my ability. Yes, suffering absolutely is what the patient says it is, and these laws are designed to honour individual patients who are dying. They are not designed for us as practitioners or clinicians looking in from the outside; they are designed to be supportive of an individual patient’s illness journey, and only they can know what the experience of that is.

Dr McLaren: It is a very good question, Mr Kruger. I think one of the distinctions is where the point of hope is and where the point of no return may be for that suffering. If you were to say that patients or people may apply for this or self confess suffering in the absence of an end of life condition, that leads to questions about whether it applies to a 21-year old with a decompensated mood disorder that could be treated or improved. When we are talking about patients within the last six months of their life, that suffering is very hard to come back from in the time that is given to them. It is about that recognition of the point of difference between hope for the future and a different type of hope—hope for improvement in symptoms or control of the situation, but not for physical improvement or a return to normal function or living. That is the real difference between legislating purely on the basis of suffering, versus in the context of suffering that will not get significantly better.

The point is that the line must be drawn somewhere. We have seen patients who have been ineligible under our laws where we have found immense suffering, and that is a difficult space to navigate in its own right, but those cases are going to happen regardless of where the line is drawn, and it needs to be in a place where people are comfortable to navigate on one side or the other. That is where the clinical education comes into the process, in terms of how we best manage that, recognise the suffering in the individual, try to make things better and work hand in hand with palliative care and other colleagues to try to improve symptoms for the patients who are not eligible under these laws.

Dr Mewett: As a palliative care physician, I spend all my professional life addressing people’s suffering in the context of an advanced, progressing, incurable illness. Palliative care, of course, approaches that from a range of different angles. I see VAD—assisted dying, voluntary —as an end of life choice among a range of end of life choices that people may or may not make. A minority of our patients will take that choice and have some control. They require and should have excellent palliative care up to the time that they die, whichever way they decide to die.

I think we should understand that despite the best palliative care in the world, there are still patients who suffer uncontrollably, unremittingly and intolerably. I believe that it is that small minority of patients who should have a legal option to take control of that stage when it is irreparable. It is not incompatible with palliative care; it is part of palliative care and an end of life choice, and not the philosophy of care that palliative care is.

Colleagues, if we are to try to get everybody in, I will have to confine Members to one question each from now on. Panel, if you could, be kind and, without denying us the information we need, keep your answers as brief as possible.

Q Could you briefly run through the patient pathway? Where does the patient first arrive in the healthcare setting? Who are the two doctors? Indeed, who provides assistance at the end of life?

Dr McLaren: Again, each of our states, as well as the Australian Capital Territory, has different legislation and therefore different processes. In broad speaking terms, say in Victoria, for example, a patient will express their wish to engage in voluntary assisted dying independently, and often they are connected to the state wide patient navigator service, which will connect them with a doctor to receive that patient’s first request and become their co ordinating medical practitioner. That doctor will then conduct the patient’s co ordinating assessment and determine whether they believe the patient is eligible or ineligible. If the patient is eligible, the doctor will refer them on to a consulting doctor, or a doctor who acts as the consulting doctor, for a consulting assessment.

If that process is also approved and the patient is found eligible, they meet again with the co ordinating medical practitioner to make a written application to engage in voluntary assisted dying. That process then goes to our review board, to ensure that it is compliant with the legislation, before we can apply for a permit to prescribe the medication. The permits are specific to our state; many other states, such as Dr Fellingham’s, do not require a specific permit for individual prescription. The permit will come back within three days, and then we write a prescription, which goes to our centralised pharmacy service. The pharmacy will wait for the patient or the contact person to contact the pharmacy and organise the delivery or dispensing of the medication.

In Victoria, self administered oral medication will be dispensed to the patient, and that is then their property; they may use it immediately or never use it—that is completely up to them. They do not require medical attendance at that time, although I have provided that on many occasions, sitting with a patient and their family as the patient has taken their medication and died. If the medication is not used, the contact person nominated by the patient is legally required to return the medication to the pharmacy.

If the patient is unable to ingest or digest oral medication, we can apply for practitioner administration, which I believe your Bill does not currently provide for. This authorises a co ordinating medical practitioner to administer the medication, either via a percutaneous endoscopic gastrostomy feeding tube or by other means, including intravenously, to the patient to bring about their death. I have certainly done that—I do not keep count, but I have engaged in that many a time.

Can I just confirm—

Order. I did say one question per person; we have to stick to the timings.

Q Dr Fellingham, given your experience of both the British and the Australian healthcare systems, do you believe there are any fundamental differences that would affect how assisted dying is implemented in this country? If there are, how might we be able to mitigate them?

Dr Fellingham: In the UK you are missing a number of the challenges that we have, such as the geographical challenges in a state as vast as Western Australia. You also have a golden opportunity to look, as you are, across every jurisdiction that already has laws in operation and cherry pick the best bits of what is working well in those jurisdictions, and so create the very best, most robust and most patient centred legislation you can.

The healthcare systems are broadly similar. We are both first world, developed western countries. We are still operating in a context of resource limitation, but not resource limitation that is so prohibitive that it would make it particularly difficult to enact a law in the UK. The United Kingdom would be broadly able to follow any of the laws that exist in Australia and implement them very successfully.

Q Thank you for joining us this morning. I am interested in following up on what Dr Mewett said about the relationship with palliative care, which has an important role to play in end of life treatment. What is the relationship between assisted dying and the palliative care world like? Also, I would like to hear a bit more about the multidisciplinary board, which I think you set up, Dr McLaren. What does the multidisciplinary approach look like in your jurisdictions?

Dr Mewett: There is no doubt that traditionally palliative care has eschewed any idea of voluntary assisted dying, for a number of historical reasons that I have spoken about in other fora and will not go into now. But it is changing, and there is a general change in attitude, especially among the younger palliative care training doctors and young clinicians, who see this as part of patient centred care, honouring the patient’s autonomy and choice, while still addressing deeply their concerns and suffering in pain management and so on.

That will see a change. I do understand where it has come from. When one looks at it almost forensically, it does not stack up and will continue not to stack up to have someone saying, “Well, VAD is not part of palliative care.” VAD is part of patient choice and it will be part of palliative care ongoing. That will evolve over time.

I am sorry but I did not quite catch the meaning of the question about the multidisciplinary aspect, Ms Leadbeater.

Q Was it a multidisciplinary board that Dr McLaren set up to look at the safety and quality of voluntary assisted dying?

Dr McLaren: This was born out of when we started as a Victorian group. We were very individual and we interpreted the law in our own ways. We complied with it as best we could, but we did not have a centralised discussion board or peer group set up at the time. We have propagated advice through the other states to ensure that there are what we call community practices, where clinicians can discuss their cases and learn from each other.

Several months after, from I think June to November, we had no interconnection with other VAD practising doctors. In November, we had a forum set up where we are able to connect and talk about difficult cases and how we would each interpret them. As the subsequent states came online, we were approached by some of the practitioners from other states saying, “We don’t really want to reinvent that wheel, so can we join your community of practice?” Because it was set up by our state government, they were unable to join, so I saw a gap in terms of creating an organisation where we could propagate that knowledge and not all start from scratch.

It initially started as a group of voluntary assisted dying medical practitioners, and we would discuss cases across the board and ask things like, “What would you do under your legislation?” and we all learned from that. Then we were approached by pharmacists, nurses and others involved in voluntary assisted dying provision, including legislators who wanted to contribute to the custodians of the voluntary assisted dying law, who are the people who actually run the projects. That then led to the creation of Voluntary Assisted Dying Australia and New Zealand, which is a multidisciplinary group of predominantly doctors, but we do have nurses, pharmacists and legislators involved. We have had two annual conferences where we discuss issues faced by many of our practitioners. That has been a great resource for people.

We are developing standards. We feel that in our legislation there was perhaps too much about instilling what the standards are. We feel as though the appropriate ness of such things as telehealth should be regulated via standards rather than via legislation, which it currently is in Australia. These are the types of topics we have weighed in on and created position statements for in order to protect the laws that we believe in, uphold and like to think of ourselves as responsible practitioners of.

Q Dr Fellingham, to circle back to the issue of training, could you go into more detail about what the initial training consists of—the nature of it and the number of hours—and how that compares with the refresher training? What is the system for mentorship, supervision, appraisal and continuing professional development requirements?

Dr Fellingham: It is important to reflect that only people who are at quite a significant point through their own specialty careers are eligible to become assisted dying practitioners in this country. For instance, I was a consultant anaesthetist and I had already been practising for more than a year. I had lived experience of caring for patients both living and dying, both anticipated and unexpectedly, over a career spanning more than 10 years, before I came to the point of assisted dying.

To become eligible to offer assisted dying, I then had to undertake training developed in a special package by the Queensland University of Technology. That training package takes about two days to complete and there is an exam at the end before someone can become eligible. The exam has a 95% pass rate.

Once someone has qualified with that training, they are offered the opportunity to give their details to the state wide care navigator service. The vast majority of people opt to do that. Once they do that, they basically become engaged in this incredibly supportive, collaborative and nurturing multidisciplinary team within a professional organisation that, in our state, covers all the assisted dying practitioners—the doctors—but also the care navigators, the pharmacy service, the individual voluntary assisted dying programme managers and the end of life choices co ordinators, who exist in all our hospital systems.

Because we are all consultants in our own specialties, there is not the same level of supervisory oversight as we would give to junior doctors—there are not forms that we fill in; we do not accredit one another—but we do acknowledge that we are all learning and growing in this space. These are new laws: even the oldest in Australia has only been going for five years. Every single one of us is motivated from a place of wanting to support, collaborate, grow and learn from one another, and ensure that the care we are offering to people in this challenging space is of the absolute highest quality.

We have a really robust community of practice. We meet monthly. Half those meetings are online to allow our regional practitioners to join, and half of them are face to face. They are extremely well attended closed sessions where, especially over the time that we have developed relationships with one another, we find an incredibly supportive space to share our experiences and to learn, grow and develop from one another.

In terms of CPD, we all have to maintain our professional registration. I have both general and specialist registration with our supervisory body, which is like the General Medical Council. I complete my mandatory CPD requirements each year, as per my specialist college. On top of that, I have just redone the refresher training, which is once every three years. That is just what was mandated in our state. If someone has not done VAD practice, they have to do the whole thing again. That is only for people who have been active in this space. That training is shorter—it is about half a day—but it is really a reflection of what we are doing on a weekly basis. We are living and breathing this work, and really strongly collaborating with everybody else who does it.

Q Could you talk us through eligibility with regard to neurodegenerative diseases, and whether you have in place any variations and considerations for things such as Parkinson’s or motor neurone disease? Is the main delivery mechanism for VAD in Australia the mainstream health service, or is it delivered through a separate wing, arm or organisation?

Who is best qualified to answer, please?

Dr McLaren: Greg, I might dob you in for the neuro degenerative perspective, if that is all right? I have been involved in several of those cases but, as a medical oncologist, it is a little outside my field.

Dr Mewett: In most Australian states, the law was made so that a patient was eligible if they had a terminal prognosis of six months or less, except in the case of a neurodegenerative disorder—the most archetypal would be motor neurone disease, but there are a number of other neurodegenerative disorders for which prognosis can be made, including Parkinson’s—in which case it was 12 months or less. We have been trying to tease that out as part of our Victorian VAD review board work, and we could not find the logical or consistent reason why there would be two different prognoses for different disorders. We think it was because the advisory to the legislators thought that patients with neurodegenerative disorders might lose capacity to continue with the process earlier.

We and all our learned colleagues know, however, that patients with all sorts of diseases can lose their cognitive abilities during their disease, particularly with cancer and motor neurone disease. We do not see that as logical or reasonable. In fact, as Dr McLaren said, we are considering recommending that prognosis is set at 12 months, which is what Queensland legislated for and practices. A 12-month prognosis is reasonable for a whole range of reasons.

Thank you very much. I have three questions remaining and five minutes, so we need brevity, please.

Sir Roger, can I ask about mainstream delivery?

I am sorry but we have to move on.

Q Can I be explicit on the palliative care point? We have heard concerns from some in palliative care provision that there is anxiety that if we introduce this in the UK, there is a risk of deterioration in or failure to improve palliative care. Can you address that directly in the light of your experience?

Dr Mewett: I will say one thing briefly. Palliative Care Australia, which is our peak body, commissioned a report a few years back that studied the introduction of voluntary assisted dying legislation throughout the jurisdictions of the world. It concluded—this is a body that was not pro VAD—that there was no adverse impact on palliative care services; indeed, it was often the contrary. Palliative care services were actually strengthened and enhanced because of the emphasis now being placed on more choices at the end of life. So I think that is an absolute furphy, as we say in Australia—you might say a red herring.

Palliative care services are not in any detriment. In fact, I would go on to say that this idea that palliative care doctors will leave in their droves if such legislation is introduced is just false. We respect conscientious objection in this space, and we have learned to live with each other and respect that people are entitled to set their own ethical limits.

Q Are you aware of any reported incidents of the misuse of medication that has been administered? As you explained earlier, patients can take the medication to their home.

Dr McLaren: We were made aware of one situation in Queensland last year. The eligible patient was given the medication, but they ended up in hospital and died from their disease. Their husband then went home, took the voluntary assisted dying medication and died. That was obviously a tragedy and no one wants that to occur, so I do not want to be flippant in talking about it, and I hope my comments are taken in the way they are intended.

We know that spousal suicides occur when people die, and we have had one case across Australia compared with thousands of successful cases of voluntary assisted dying conduct. No other cases have been evidenced, so the rate of that is incredibly low. The voluntary assisted dying team in Queensland, on the same day that they became aware of that case, put in steps to ensure that it would not happen again, which I believe included the required return of the medication.

We also have to balance the autonomy of having the medication available to patients at 2 in the morning, when they have an exacerbation of their pain and say that enough is enough, instead of waiting for business hours when the doctors are available to come and sit with them. It is a very delicate balance and there will always be that risk. I think the balance is struck well and the safety can be upheld by still providing the patients access to their own medication.

I am going to take one final comment from Dr Mewett, as we are practically out of time. I am sorry that there is one Member who has not been called.

Dr Mewett: To be absolutely clear, spousal suicide occurs with leftover palliative care drugs, and we had two cases of that in Victoria prior to voluntary assisted dying. It is hardly surprising that that may occur in a very rare number of cases.

I am afraid that has to bring this session to a conclusion. Dr McLaren, Dr Mewett and Dr Fellingham, thank you for giving up your evening for us. The Committee is indebted to you. Thank you very much indeed and have a good night. While we are changing over, I call the Member in charge of the Bill to move a motion.

I beg to move, That in the list of witnesses set out in the table in the sittings resolution agreed by the Committee on 21 January 2025 and amended on 28 January 2025, leave out “Professor Jane Monckton Smith OBE” and insert “Hourglass”.

Unfortunately, we found out in the early hours of this morning that one of our witnesses is unable to join us this afternoon.

Question put and agreed to. Examination of Witnesses Professor Tom Shakespeare, Dr Miro Griffiths, Yogi Amin and Chelsea Roff gave evidence.

Q We will now hear oral evidence from Professor Tom Shakespeare from the London School of Hygiene and Tropical Medicine; Dr Miro Griffiths from the University of Leeds, who is accompanied by his personal assistant; Yogi Amin, a partner at Irwin Mitchell; and Chelsea Roff, the founder of Eat Breathe Thrive. We have until 11.25 am for this session. I ask the witnesses, starting with Dr Miro Griffiths, to introduce themselves for the record and to make a brief opening statement.

Dr Griffiths: How long do I have for the opening statement?

It should be very brief, please, because the Committee will put questions to you and you will, I hope, have adequate opportunity to make the points you wish to make.

Dr Griffiths: My name is Dr Miro Griffiths. I am based at the University of Leeds. I hold several advisory positions on disability policy in the UK and across Europe. I am also connected to organisations such as Not Dead Yet UK.

My position is that I am overwhelmingly against the principle of and the clauses set out in the Bill, primarily because of my concerns about how it coalesces with the systemic injustices faced by the disabled people’s communities in the UK. I also have reservations about how it will affect the relationship between medical practitioners and disabled people’s communities. There are some deep concerns around issues of coercion that are not satisfied within the Bill. I also have reservations about the way in which we are navigating towards emphasising the trajectory of a health service that facilitates, and arguably accelerates, death over other forms of assistance within the community and within our health service.

Chelsea Roff: Thank you, Chair, and to the Committee for having me. I have been the director of a charity based in the United States, but now working in over 50 countries around the world, for the past 11 years. I am here in a personal capacity, and really I am here as a researcher.

My area of research has historically been the treatments and prevention of eating disorders, but last year it took a turn and I, along with my co author, Dr Catherine Cook Cottone, completed a systematic review of assisted death in eating disorders. Our findings really shocked me. We found that at least 60 people around the world have been euthanised or assisted in suicide—I am using jurisdiction specific terminology there; I will use “assisted death” and “assisted dying” today—including in three jurisdictions in the United States, where I am from: Colorado, California and Oregon.

That is important for the Committee because those are jurisdictions where assisted death is legally restricted to terminal conditions. We saw anorexia nervosa listed by name as a terminal condition. Most alarmingly to me, in two of the states we could find no mention of documented cases in the annual state reports. Had a physician and her colleagues not written a paper and told the world about it, we would not know that those young women had died. In 100% of the cases we reviewed, the people were women, a third were between the ages of 18 and 30, and two thirds were under the age of 40. I have to emphasise that these were young women who did not have failing organs and did not have comorbid terminal conditions; in none—zero—of the cases we reviewed was there organ failure or comorbid conditions, and they had decades of life ahead of them.

I hope that I can be helpful to the Committee in sharing the evidence that we have uncovered internationally. The evidence is most relevant to clause 2, on the definition of terminal illness, and clause 3 on mental capacity, but it is also relevant to latter parts of the Bill, on reporting and on the approved substances used for this process.

Order. I am going to have to urge brevity on everybody this morning, because of the time that we have not got.

Chelsea Roff: I am done.

Yogi Amin: Morning—thank you for having me. I am Yogi Amin, and I am a partner at Irwin Mitchell solicitors, where I head up the public law and human rights department. I have worked in the area of mental capacity law and public law for over 20 years. That includes on cases where there are disputes over medical treatment and safeguarding aspects. I have put a written note into the Committee this morning; I am sorry it is late, but it arrived just before I did. I can touch on some of the points in that note.

The evidence I give, and the information I have given, is in a personal capacity and should not be attributed to my employment or any organisation I am in; I am a trustee of the Royal Mencap Society. I am also a Law Society accredited legal representative, which means that as part of my practice I represent people who are vulnerable and come before the Court of Protection for decisions about disputes on mental capacity and best interests.

Professor Shakespeare: Thank you for inviting me. My name is Tom Shakespeare, and I am professor of disability research at London School of Hygiene and Tropical Medicine. I am a sociologist, and have done considerable qualitative research with disabled people.

I am here to say that most disabled people support the Bill. There are some very vocal people who oppose it—and they have every right to do so—but the Bill is supported by disabled people, probably because it is restricted to terminal illness, which I think is a good thing. I would oppose the Bill if it was relevant to all disabled people; this Bill is only relevant to people who are dying already. It defines terminal illness very clearly. For example, mental illness cannot be the sole criterion —so that would rule out people who have eating disorders, I think.

Obviously, we live in a difficult world and there is a lack of social support. I would like to see better palliative care, more hospices, and more options for disabled people and people who have terminal illnesses, but this legislation should be a tool in the toolbox for people who have terminal illness. They may not select it, but knowing it is there will give them the assurance that they will face death knowing that they have a way out and a quicker, better death if they choose that. Most will not, but some will and they should have that right.

Jake Richards was not called for the last panel, so we will start with him.

Q Thank you for those introductory statements. I have a question for Mr Amin regarding the current operation of the Mental Capacity Act 2005, and how the Court of Protection approaches that issue. The Bill as currently drafted essentially defers to the Act, and I wondered if you have any reservations about that, or any thoughts that you could offer the Committee?

Yogi Amin: Reservations—no. In fact, I wholly recommend and support the idea as drafted to defer to the Mental Capacity Act for capacity assessments. I have been working in this area for over 20 years, before and after the Mental Capacity Act came in, and I have done cases all the way up to the Supreme Court, as well as day to day different cases around the country. It is well understood how capacity assessments are done, and it is ingrained into the practice of practitioners generally and of legal practitioners in the courts. Certainly when I give training to advocates, doctors and so on, it is well understood how to apply the test. That could be adapted for this particular decision, which is done here. In the past couple of years, we had a decision in the Supreme Court which settled how to approach the question of capacity, and to disturb that would concern me.

Q To be clear, would it concern you because it would cause confusion?

Yogi Amin: It is a well settled and understood approach to the law, and producing a new one would throw up a whole new conundrum, where people would be questioning how to approach it, etc. It is not broken—it works well.

That was a specific question to Mr Amin, but it is an important issue. Does anyone else wish to come in, briefly please?

Chelsea Roff: One thing I would like to highlight in our study is that all 60 people who died—young women, mostly—were found to have mental capacity to make the decision to end their life, so I worry that mental capacity will not be an effective safeguard to prevent people with eating disorders from qualifying under the Bill.

I also note that Oregon and California, where I am from and where we have found cases, have an additional safeguard to mental capacity. That is, if there are any indications that the person might have a mental disorder, that person must be referred for a mental health assessment. It is important not to make a false equivalence between mental capacity and mental health.

We could, for instance, have a person who has a prognosis of six months or less, but their wish to die is emerging from severe depression, from suicidality. We saw very high rates of suicidality and depression: 89% were depressed and nearly half chronically suicidal when they died. Physicians emphasised, still, that the wish to die was not emerging from a mental illness, despite them having diagnosed mental illness.

Q My question is to Chelsea Roff. First, thank you for your written evidence, which I found extremely helpful. It indicates that in Oregon, California and Colorado, patients with anorexia have qualified as having a terminal illness. There have been instances of patients suffering with anorexia being described as terminal, and of treatment being withdrawn, in the UK itself. Is it accurate to regard these young women as suffering with a terminal illness? What changes to the Bill would you suggest to protect them better?

Chelsea Roff: Thank you for that question. No, I do not think it is accurate, but I have to emphasise that laws in other countries have expanded through clinical interpretation, not just legislative amendment. There are clinicians—a very small minority—who disagree and who have characterised anorexia by name as a terminal illness, but they have also said that eating disorders qualify because of the physical manifestation of the disorder. You cannot disentangle a mental disorder from its physical effects. They cite terminal malnutrition; we have identified 25 cases between California and Colorado where malnutrition was listed as the terminal condition. I cannot rule out whether that was anorexia or something like voluntary stopping of eating and drinking, but I worry that it is the physical manifestations that will be cited and, without a mental health safeguard in the Bill, that puts a whole lot of people at risk.

Dr Griffiths or Professor Shakespeare, do either of you wish to comment, because you have not spoken yet?

Professor Shakespeare: If you look at clause 2, the definition of terminal illness is very clear: “a person is not to be considered to be terminally ill by reason…of…having one or both of…a mental disorder”

or “a disability”. I think that would cover that case.

Chelsea Roff: May I add one sentence? I think you have left out an operative word in that sentence, which is “only”. It reads, “a person is not considered terminally ill by reason only of”—

Thank you. I call Marie Tidball.

Q Just to clarify, that word is in clause 2(3). I will ask a question of Professor Tom Shakespeare first and then, if I may, I have a follow up of Dr Miro Griffiths. Tom, why is it so important that disabled people have a choice? I made it very clear when I voted for the Bill on Second Reading that I would only do so because it was not about intolerable suffering but was limited to six month terminality. From the perspective of disabled people, can you expand on that point and share any research that has been done in jurisdictions where equivalent legislation is now in place?

Professor Shakespeare: I would say that it is very important that the Bill is for terminal illness only. It should give a sense of safety to disabled people. In jurisdictions like Oregon, California and Montana, which Chelsea has mentioned, we have not had an expansion from terminal illness to, as it were, suffering. If you do not carry suffering in the Bill, you will not get into the situation that Canada got into.

I gave evidence because Canada was seeking—some people were seeking—to expand the coverage of their Act to all disabled people. They did so by referring to the Canadian charter of rights and freedoms and to the word “suffering”. They said, “Look, lots of people are suffering, not just terminally ill people”. Therefore, it is very important that it is only terminally ill people who are covered by this Bill. That, as I say, should give disabled people some support.

As you know, Marie, we talk about choice and control as being the principles of independent living. Disabled people should have rights over their lives. This applies to people who are disabled, yes, but terminally ill primarily. That is why they should have this law, which gives them choice and control over their lives. They are going to die anyway, but it removes the fear and reality of a difficult, unpleasant and undignified death.

Dr Griffiths, do you want to add to that?

Dr Griffiths: This issue highlights a fundamental flaw with the Bill, which is the nonsensical division between a terminal illness and what constitutes being a disabled person. Section 6 of the Equality Act 2010 states that a disabled person is somebody who has a “physical or mental impairment” and the impairment “has a substantial and long term adverse effect”

on their “ability to carry out…day to day activities.”

If you have a terminal illness, it is likely that you will be defined within the terms of what is outlined in section 6, so it is a fundamental flaw, because disabled people will be incorporated within this.

The issue also highlights this arbitrary nonsense about a six month perspective. What constitutes six months left to live, particularly if you are engaging with technological devices, medical assistance and so on? For example, I have a progressive condition that continuously makes me weaker and has respiratory complications and so on. If I remove the ventilator that I use at night, if I remove my other medical devices and if I stop my engagement with therapeutic services, does that constitute me having a terminal illness, because my rapid acceleration towards death becomes more evident?

These concerns highlight fundamental flaws, but they also play into what a key issue: the campaigning that will continue after the Bill, if it is to succeed. You will get people who will say, “Why not five months, or seven? Why not other conditions that are not being highlighted in our current discourses?”

Q Dr Griffiths, do you think it is possible that disabled people are likely to be or potentially more at risk of being coerced or otherwise persuaded to seek assisted dying as a result of the Bill?

Dr Griffiths: I think so—I think the coercion principles outlined in the Bill are incredibly weak in terms of the scrutinising and the process of how you judge whether coercion has taken place. We know that coercion is a complex issue, but put that against the context of disabled people’s lives; we are talking about disabled people who are struggling day to day to access sufficient support and to live in participatory, accessible societies. The feeling, then, of societal coercion—the feeling that this is a tolerable idea—highlights my concerns about coercion.

It also plays into the issue of support and assistance to understand what your rights are, not just in terms of what we are talking about here but broader disabled people’s rights. There is a lack of advocacy services available to disabled people, and there is a lack of support for disabled people to have accessible information about their rights. If you feel that assisted dying is your only choice—as opposed to accessing support or calling out discriminatory practices in, say, access to social care and healthcare—that highlights, again, situations where coercion will manifest. The infrastructure to support people either to respond to coercion, or to understand that they do not have to be in that position in the first place, is non existent.

Q One of the things that we have heard from other countries that have assisted dying is that this is one of the strongest and most robust laws. I wonder whether Professor Shakespeare has any more views on how we could make the Bill even tighter, and provide support and further peace of mind to people who might be worried about it?

Professor Shakespeare: When I read the Bill, I thought that it did have many safeguards. It has, for example, five opportunities for a conversation with doctors or other supporters. That is a good safeguard. I think it makes a criminal offence of dishonesty, coercion or pressure, so that would scare off people. Miro is quite right—there are people who might put influence on somebody, but I hope that they would be covered under clause 26 as having committed an offence. That would scare people who may have a particular view against assisted dying.

How can we make it stronger? We could have more of an advocate for the person who is requesting assisted dying—somebody who will support them, within the law, to make that decision or to think about their decision. We are trying to make sure that everybody who is thinking that this is for them has the opportunity to talk about it and to think about it. The time and the conversations are all about that, but maybe an advocate also would be the person who is requesting this step, who is not a beneficiary in any way of that death, and they could be a neutral party to give advice. I am not sure. However, there is a lot here. There are five conversations. I am not surprised that people thought it was strong. I think it is a strong Bill.

There is scope for doctors and other medical practitioners to act on their conscience and to withdraw from this. Miro made a useful point, which is that we do not want any disabled person frightened of their doctor or worried that their doctor, who has been supporting somebody else to die, might do that with them. In conversation, Marie, we have talked about an assisted dying service as being a part of the NHS, but I wonder whether it might be specifically around this. I think that it is worth considering whether the average doctor is the person to whom a person should take a concern or a wish to die.

So this is about advocacy and maybe having a specific service for people who want to go down that route. However, I think it is a strong Bill as it stands.

Q One of the things that we have heard from other people and other jurisdictions is about moving away from a High Court judge, and having a multidisciplinary team and panel. Do you think that would further strengthen the Bill, and would you support that?

Professor Shakespeare: I think the law is only one of the influences that might be involved. There is also physical health, mental health and social wellbeing. I think a multidisciplinary panel might be a better way of finding out. But I bow to my friend Mr Amin, who has a lot more experience of legal panels than I have.

Mr Amin, do you want to comment?

Yogi Amin: The way the Bill is drafted, the judges reviewing the case are not making an order; they are declaring a plan that someone else has produced and has put in front of them. It is a strong, independent, legal and judicial safeguard, as part of the Bill. My written submission, you will note, says that the courts are well used to doing that. The courts have been doing it for many years. They have been dealing with disputes over facts, disputes over capacity and disputes over medical treatment. They are able to identify safeguarding issues. The courts and the judges are certainly able to do it. I am not speaking to the question of capacity. If the question is about whether to introduce something different from a High Court judge, I will wait to see it and scrutinise it, but as it is drafted at the moment, I would say that a High Court judge is a strong legal safeguard as part of the mix of safeguards in the Bill.

I will come back to Marie Tidball, but I want to make it plain to the panel that, while questions are being directed to specific panellists, if anybody wishes to come in on something, do please indicate.

Chelsea Roff: To your question, Mr Gordon, about whether this is the safest Bill in the world, I know that due care has been taken to make that happen. One of my biggest concerns about clause 2 of the Bill is that it makes no distinction between a person whose illness can become terminal if they refuse or cannot access treatment—for instance, someone with diabetes. Type 1 diabetes affects 300,000 people in this country, and it often co occurs with eating disorders. The way this is written would not prevent someone who chooses to stop taking insulin from qualifying as terminal.

In the US, we are seeing voluntary stopping of eating and drinking used to circumvent the terminal illness safeguard. I will quote the American Academy of Aid in Dying Medicine, which is the professional body: “Legally, there is nothing in the letter of the law…that explicitly prohibits accepting voluntary stopping of eating and drinking as a terminal diagnosis to qualify for aid in dying.”

It describes this as a “legal gray zone” that would “essentially eliminate” the terminal illness criteria. There is nothing in this Bill as written that would prevent that, and we have to look at the letter of the law, because it expands through interpretation, not just amendments.

Q This question is for Professor Tom Shakespeare and Dr Miro Griffiths. One of the amendments I am backing would establish an advisory council on the impact of the Bill on disabled people, because I am passionate that we monitor the impact on that group of people, should the Bill pass through Parliament. What structure or mechanism do you think could work to facilitate that?

Dr Griffiths: This plays into a broader issue around the reporting mechanisms associated with the Bill. I think there needs to be further robust action around how to collect data and allow it to be analysed, to see the trends that are occurring in why people are pursuing this option and how that may play into broader political and socioeconomic issues, such as a lack of services elsewhere or frustrations for disabled people and their families in trying to access particular services.

This goes back to a point that Tom made. While we may see popular opinion within disabled people’s communities, it is worthy of note that no deaf and disabled people’s organisation—these are organisations that are representative of disabled people who engage critically with the issues facing disabled people’s communities—has been in support of this. I would therefore encourage their representation on any form of advisory council. I would also request that disability studies scholars, who are often left out of the discourse around disability policy, are part of any form of mechanism to advise or scrutinise.

Professor Shakespeare: I think the council is a very good idea. It should reflect the range of views, as Miro says. In Oregon, disabled rights advocates have not, as I understand it, opposed the Act that they now have. Of course, it is mixed, but some disability groups are definitely in favour. There is a difference between organisations of disabled people and disabled people on this. Politically, the disability rights community are against assisted dying—they always have been. That does not mean that they reflect what ordinary disabled people want, and that is what is important. I think you should be interested in what people want, and they want this.

Q My question is to Dr Griffiths and Chelsea. We have had almost two days of evidence. Yesterday afternoon, we had practitioners from the States and, this morning, we had practitioners from Australia. The message they gave seemed to be very clear that coercion essentially does not happen in voluntary assisted dying. The message also was that those who went through it were people who wanted to—it was very appropriate for them and there were almost no issues. Can you explain why they are wrong, if you believe they are?

Dr Griffiths: That goes back to my previous point around how coercion can manifest in various different ways. One can be exposed to the societal pressure to feel that your life is no longer tolerable because of the struggles that you have in terms of accessing services, provision and support. We know from data that we have people in the community who are struggling to see their GPs or consultants associated with their conditions and changes in their conditions. The coercion, I feel, will come from how society is organised, and does not respond to the injustices faced by disabled people.

Also, there is a broader, slightly different issue, which is that there is nothing in the Bill, in my view, that satisfies the concern that—if it were to pass—you would create a network of practitioners who are sympathetic to the principles of assisted dying, and therefore, when somebody comes forward to say, “I want to die”, they will be more receptive to those ideas that the individual has. They will therefore facilitate their process through that, which I think undermines any attempts to have objective scrutiny of coercion that may occur. There is nothing that stops you from saying, “I know that there are these certain people I can go to who have either been public or have supported others to have access to this service. Therefore, that is my best chance of gaining access.” That then collapses all attempts to address issues of coercion.

Chelsea Roff: To add to what Miro is saying, we have seen in our study a more subtle form of influence, and sometimes it actually comes, tragically, from the clinicians themselves. We saw 95% of clinicians tell the patient and their family that they had an incurable, irremediable illness with a prognosis of six months or less in some cases. That has an influence on a person and does not cohere with the evidence on eating disorder recovery— in fact, we have no good ways of making prognosis in eating disorders. The only good prognostic indicator we have is weight restoration.

I would also highlight—relevant to here, where we live —that the all party parliamentary group on eating disorders just put out a brilliant report on huge gaps in the care system. I am working with a person and a family right now, who has been to the Court of Protection, whose eating disorder team presented her and used the term “not treatable” to the judge, as well as the term “in the end stage of her illness”, and predicted that she would die within six months. Eighteen months later, she and her family are still fighting for treatment and are being denied services. That is the kind of coercion I am worried about, which happens within a healthcare system that I know many of you were elected to fix. That is what so many people have called for—to fix a broken NHS. That is not my choice in terminology—I love the NHS, but I think that is what we need to be worried about.

Clause 4(4) especially to me reads like a formula for coercion. A physician could say to a young woman with an eating disorder, “You have a severe and enduring eating disorder”, which you will not find in any diagnostic text, but is used frequently in these cases and in the Court of Protection. They could say, “We have done all we can. The treatment options are exhausted”—again, you will find that in the Court of Protection—and, “Your prognosis is poor”. It leaves you with a feeling that you have nothing left to choose from, especially if you are struggling to access services.

I mean no discourtesy to the Committee, but we have 20 minutes, and 10 Members wishing to ask questions, so we have to move this on I am afraid.

Q Can I ask you, Mr Amin, about your views on coercion, particularly in the light of clause 2 in reference to the Mental Health Act 1983 and the Mental Capacity Act, and any thoughts you have about that in relation to the groups you represent?

Yogi Amin: As I said, I have worked in this area for over 20 years. I represent individuals week to week in this area and safeguarding is all across what is needed for these individuals. The professionals who are involved in their lives are regulated. We are talking about doctors who are meeting individuals, and they understand what it means to identify safeguarding triggers and where referrals are required. That makes it quite strong in this particular Bill.

I am comfortable with the wording as you have it in the Bill, and I say that as someone who has worked in the area for many years. Lawyers will go to court and pick over words, but the way it is drafted, it is understood that there is voluntariness, as described in the Bill, and coercion. I do not think that additional words are necessary to describe what is required here—it is a voluntary, free will decision, and coercion is defined. When we are talking about a doctor trying to understand that and a court then interpreting it, I think it is pretty clear what that is, so I am comfortable with the way it is drafted.

Generally, from a safeguarding perspective, there are, as Tom said, a number of points at which professionals ask individuals for a decision on this over a number of weeks, and it goes into months. There is quite a robust process. I point also to footnote 3 for paragraph 4 of my written evidence, where I have referred to the current existing law outside the Court of Protection, where it might be thought that the person has capacity but there are concerns about coercion and so on. There is, under section 42 of the Care Act 2014, the provision for safeguarding referrals. There is, under section 222 of the Local Government Act 1972, provision for a local authority where referrals are made to bring the matter before the court under the inherent jurisdiction.

The inherent jurisdiction does not go away; it is here and available where there are concerns over the safeguarding of an individual to allow them to make their own individual, free will decision. It is not there to do anything other than protect that individual and have a safety net around them to ensure they can make individual, autonomous decisions. Nothing needs to be tinkered with in the current Bill, because that is there—Parliament has already provided for that. Have I answered your question?

You have given clarity. Thank you.

Q My question is for Professor Shakespeare and Dr Griffiths. Clause 4 of the Bill offers the opportunity for clinicians to instigate the discussion on assisted dying. Could you both tell me your view on that, please?

Professor Shakespeare: It is natural and right that somebody should discuss their wishes with a doctor who supports and treats them. I do not think there is a problem there. Marie’s suggestion that there should be a wider body to look at this is very relevant. At the moment, doctors refer women for abortions, and that does not stop them also supporting pregnant women. I do not think that women would distrust their doctor because they are sometimes involved, at some point, with an abortion decision. That is quite obvious. As my colleague Yogi Amin said, the Bill covers what the terminal illness is, and why we should support people to voluntarily exercise their choices. Lots of doctors will not be in favour of this, but they will be clinically professional and they will discuss with the person. I do not have a concern about that. You are more likely to be kept alive against your will than you are to end your life under this Act.

Dr Griffiths: My first point is that, for me, the Bill raises concerns because it relies on doctors’ interpretations of prognosis. If a doctor assumes that you have six months left to live, and is therefore going to start having a conversation with you about the possibility of assisted suicide, that draws into question how we allow assumptions to be made about whether an individual has six months left to live. That is particularly the case given that we have evidence that shows that, with certain interventions or mishaps surrounding prognosis, individuals can live for months, years and decades longer. The idea of bringing in the conversation from the point of view of the medical practitioner could, arguably, accelerate one’s death—if you take into account that their idea of prognosis might be flawed.

It also, I think, raises problems, because we know that many individuals with health conditions and impairments—irrespective of whether we want to create this false line between disabled people and people with terminal illness—do not have access to advocacy or representation in these kinds of processes. Having a conversation where there is extreme credibility and validity that rests on the medical practitioner could exacerbate issues around coercion.

We could take a moment of reflection. When we were going through the pandemic, the Parliamentary and Health Service Ombudsman highlighted how medical practitioners could think about “do not attempt resuscitation” orders and how they were utilised in the disabled people’s community. That has parallels with the issue we have here, where medical practitioners will be making assumptions about whether conversations or applications should be made.

Yogi Amin: Can I just raise one point on representation? I point Members to paragraph 10 in my written submission, which tries to make the important point that if we are involving courts, individuals need access to justice. They need access to advice, and that means legal aid. I point in that paragraph to the provision of non means tested legal aid, just like in the case of parents of children and the withdrawal of life sustaining treatment. Those current rules are in place for parents, and a similar arrangement could be put in place for individuals who are brought before the court in this matter.

Q I have a question for Mr Amin. England and Wales is a single jurisdiction, but health is devolved and we have been discussing an amendment to clause 12 in relation to the court of a multidisciplinary arrangement, as opposed to the High Court. What are the implications for the Committee to understand in how this plays out, with health being devolved but the jurisdiction being single?

Yogi Amin: If the legal panel is not a High Court judge, but it is a multidisciplinary panel, then it just draws upon the people in the local areas. The Court of Protection operates in England and Wales and the judges apply the law the same way. That is what the panel would do in this case. Are you more concerned about the make up of the panel or how they apply it?

Q What I am trying to tease out is what is the responsibility of the Senedd and what is the responsibility of the UK Government. This is going to be challenging, given that health is devolved and has been for 25 years.

Yogi Amin: Are you talking about responsibility for resourcing it?

Q Who has to decide who is appointed to what—which body?

Yogi Amin: Oh, I see. I suppose if there is a multi disciplinary panel, the judiciary would appoint the individuals. It would be a judicial body, essentially. I do not know if you are talking about a tribunal that is multidisciplinary, although I know people shy away from tribunals.

I think there is a question, because we are a Committee on a private Member’s Bill, as to how we ascertain these details.

I think that is a matter that we may have to pursue elsewhere.

Q I have a quick question for Dr Griffiths and then Chelsea. Dr Griffiths, how does the Bill exacerbate issues for disabled women in particular who might be experiencing abuse or other vulnerabilities?

Dr Griffiths: There is no indication of how you would place the infrastructure for support for people whose discrimination or injustice is exacerbated through an intersectional lens—for example, the cross cutting of different experiences—and how that can be attested for within the Bill. For example, if an individual comes forward to discuss with their doctor their concerns, there is no infrastructure for how that would be acknowledged with an intersectional critique.

There is also a concern that many within disabled people’s communities from particular backgrounds, such as women, are pre exposed to further levels of injustice that are not accounted for, and their experiences of trying to access support for certain aspects of their life are compounded by inequalities. These issues are not addressed by the Bill. In my view, if this mechanism becomes available, the issues that some individuals face in terms of injustice will play into the consciousness of their decision to go forward with this. I cannot think of any clause or amendment that would address that issue in its totality.

Q Before I move on to Chelsea, I want to point out that Professor Shakespeare said that most disabled people support the Bill. But, actually, only one deaf and disabled people’s organisation that opposes it is giving evidence. I just wanted that point noted for the Committee.

Chelsea, thank you for your evidence. Eating disorders are classified as mental disorders under the Mental Health Act. The Bill explicitly states that a person cannot be considered terminally ill only because of a mental disorder. You have also talked about the withdrawal of insulin. Could you respond to both of these? Why do you believe that eating disorders would still meet the criteria under the Bill, and likewise for the issue of stopping insulin?

Chelsea Roff: There is a false distinction being made in the Bill between a mental disorder and its somatic or physical manifestations. Mental disorders, especially eating disorders—not just anorexia—impact the body, and have life threatening consequences. We had 20,000 acute hospitalisations for eating disorders in this country last year, and we have massive gaps in care. Those are individuals who, if they were to choose to forgo treatment or could not access treatment because they were on a wait list for a long period of time, would qualify under this Bill.

I draw your attention to the evidence I submitted with Dr Agnes Ayton from the Royal College of Psychiatrists, and Dr Angela Guarda, a leading physician from John Hopkins University. I also draw you to our own case law in the Court of Protection where we have had physicians represent eating disorders as terminal conditions, as in the end stage of their illness.

I am grateful that you have drawn the connection to diabetes, because it is not just about eating disorders. Substance use disorders would have the same effect. Outside of mental disorders, HIV/AIDS is a progressive condition that cannot be reversed by treatment. Are you okay with a 19-year old young man who decides to discontinue treatment qualifying under this Bill? Those are the questions you have to ask. I am not, in principle, against the Bill, but you have to look at the letters on the page, because they will be interpreted after the Bill is passed. Your constituents are depending on you.

I am sorry, but we still have more Members and questions than we have time, so I am going to come down to one question per Member.

Q Thank you for coming to give evidence this morning—it is incredibly helpful. I am going to come back to clause 2 of the Bill, which concerns the definition of terminal illness. I am very clear on who the Bill is aimed at helping and who it is not aimed at involving. The definition says that the person has to have “an inevitably progressive illness, disease or medical condition which cannot be reversed by treatment”.

It also says, for the avoidance of doubt, that this cannot be “a mental disorder” or “a disability”. I hear your concerns, and I want to support you and work with you on this. I am keen to know: what else do you want to see in the Bill that would reassure you that this is not about disabled people or people with mental disorders?

Dr Griffiths: I am conscious of time, so I will be very quick. My first point would be, why would you stick it at six months then? Why not have it at seven days, for example, as a way to take out our concerns? If you are talking about prognosis, let us go back to Chelsea’s point and the point that I made before. My condition is a neuromuscular condition. I have had meetings with clinicians where some have referred to it as a terminal illness, some have referred to it as a life limiting condition, and others have referred to it as a progressive condition. The articulation of the ideas and the ways in which we think about conditions show the complexity of the issue. We are talking about terminal illness, and people who are terminally ill do constitute disabled people under the Equality Act, so you cannot make the distinction.

If you want to be quite proactive about it, then why not reduce the prognosis timeframe and make it as short as possible to take out the concerns about prognosis, and the concerns around whether individuals are going to live longer or could be facilitated access to alternative treatments to prolong life? I do not understand why we are fixated on a six month prognosis because, as we have seen in other countries, as soon as you pass the legislation on six months, you will have individuals who say, “Why not seven months? Why not five months?” You will have campaigners who will say, “This does not include me and I have been campaigning for this.” There will be pressure to change and Governments will change. There is no guarantee that you can make that the eligibility criteria will be fixed.

Q I want to give Professor Shakespeare the chance to respond to the point that we have heard. I am interested in whether you recognise that many disabled people—in fact, not just disabled people, but anybody who declines treatment that keeps them alive—would qualify as terminally ill under the terms of the Bill? What protections we could give to prevent that?

Professor Shakespeare: First of all, a terminal illness is defined as a “condition which cannot be reversed by treatment” I know that that does not mean a cure; you are not aiming at a cure—but it says, “cannot be reversed”. Surely that would not include things like HIV and diabetes because they can be reversed. They cannot be cured; they are still there, but they can be reversed with insulin, antiretrovirals or whatever.

I think, yes, terminally ill people are disabled people almost always, but that does not mean that all disabled people are terminally ill. Even if you have a disease or a condition—like Miro does or like other people do—that will probably result in your death eventually, you are not going to die tomorrow or in six months. You may die in 16 years or whatever. It is very difficult to define terminal illness, and that is why six months, I think, is used in this Bill.

Very recently, my aunt died. She was unconscious for the last month or so of having cancer and then she finally died. She would not have been able to express her will and her preference to have assisted dying, even if she wanted it. Therefore, I think six months when you can have capacity, you can anticipate, you know you are going to die but you want to have control in the manner of your death, is more useful than seven days or less, when you might be unconscious and you might not be able to express a will or preference.

I call Simon Opher.

Actually, my question has already been asked.

Chelsea Roff: May I respond briefly? I want to address the question. I know it is not your intention for eating disorders to be included in this Bill, and I am grateful for that. When I started our research, I thought, “We just need stronger safeguards.” That was where I began, and after looking at 33 jurisdictions around the world, I have real doubt about whether safeguards are enough; I know how difficult it is to put it on the page, and I am seeing it expand and be applied through interpretation. I disagree with Professor Shakespeare, respectfully, that diabetes is a reversible condition. You cannot go back in time and reverse that condition.

I agree that you are doing this for a noble purpose, and there are members of my family that want this Bill to go through, and yet I emphasise to all of you on the Committee that the question before you is: could this Bill have knock on effects for some of your most vulnerable constituents? How many deaths are you okay with? If the safeguards fail once, that is a human being who maybe, in a despairing moment, was handed a lethal medication instead of the care, the treatment and the help they needed. That is what we are talking about. You really have to get this right, because those people are depending on you.

Q Mr Amin, given your expertise in representing these cases in the court, can I ask you for your view around the Mental Capacity Act issue regarding eating disorders and other disorders? Obviously, we have heard one version of that. Given your experience of working with UK law to the highest level, what is your assessment of this?

Yogi Amin: I have worked in a range of medical treatment cases over many years, covering different illnesses and conditions, and clause 2 reads fine to me. It works. It is clear. I do not consider that it needs any additional words. I can understand, when we go to court, that cases will come through and they will fall within those definitions, and it will be clear. I do not consider anorexia to come under a terminal illness unless it is right at the end of life, and that does not really fit within the parameters of the Bill, because we are not talking about right at the end of life. We have section 63 of the Mental Health Act, which deals with anorexia, and there is force feeding that clinicians consider. That is my view on the anorexia side of things.

Doctors will provide the evidence on terminal illness. You heard from the chief medical officer yesterday, and they will provide guidance around all of that. Subsequent to the Bill, there will be secondary legislation and then the guidance. They will provide clear guidance that will then feed into this and the evidence that will be before a judge that says, “Yes, it is a terminal illness, and this is the prognosis” and so on. It is nothing different from what we produce in medical treatment cases before the court at the moment, where the doctors produce expert reports and give evidence. They explain the condition, the prognosis and their decision on capacity, and they explain what is in the best interests of an individual if they lack capacity. As I understand it, the Bill is crafted to produce the evidence as you go along the path here, and then eventually to the judge.

Chelsea Roff: May I add one sentence, because it is related to eating disorders? I would refer to a 2012 Court of Protection case, where a 29-year old with anorexia was described as being in the terminal stage of her illness and multiple physicians described her death as inevitable. I would also refer to a 2023 case seen at the Court of Protection, which said, “I recognise with deep regret that it will probably mean that she will die.” She was also described as being at the “pre death stage”. Again, that young woman is still alive and still fighting for services. Although I respect what Mr Amin is saying, and I agree with his interpretation, we have case law in the UK where people with anorexia are being found to be terminal. We have to take that reality into account.

Yogi Amin: I do not think they were found to be terminal. They were described by a doctor in a case as being terminal, and that doctor may not have described it properly.

Chelsea Roff: Indeed, but a judge will be relying on doctors.

Thank you. This will have to be the last question.

Q I have a question for Mr Amin. You worked on the judicial review of Noel Conway in 2018. For the benefit of the Committee and those watching, Mr Conway had terminal motor neurone disease and he looked to bring a judicial review in order to have the option of assisted death, when he was in the final six months of his life. Mr Amin, what were your experiences from that case that may inform the Committee’s learnings when looking at the Bill?

Yogi Amin: Mr Conway was an extremely intelligent and brave individual who campaigned in this area. His strong view about autonomy led him to bring that case, and what he was arguing for in that case forms part of what you have here in the Bill. He was certainly asking for a process in which a decision could be made and some robust safeguards could be provided, which would end up with a court process, and that is what you have within the Bill. I also learned through that case, and others over the years, what the Human Rights Act, the European convention and parliamentary sovereignty mean here. On all three counts, the cases have always said that it is Parliament that makes the decision—so it is you who are deciding. I do not see a court overturning that.

The courts in the Conway case—the High Court, the Court of Appeal and the Supreme Court—were all very clear that it is a matter for Parliament. I really do not see the European Court of Human Rights overturning it in any way at all, and that is from my long experience. The margin of appreciation is very strong with this Parliament to make the decision. I also think, from a drafting perspective, the Bill very carefully defines the individuals—it has drawn the line. Certainly, the courts cannot do it; they cannot extend that line and they will always defer back to Parliament. If you craft the Bill as it is, I am very confident that it will be left here.

Order. I am terribly sorry but we are out of time.

The Chair adjourned the Committee without Question put (Standing Order No. 88).

Adjourned till this day at Two o’clock.