18
Examination of witnesses
Liz Carr, Jean Eveleigh, Baroness Hollins and Dr Henry Marsh.
Q10 The Chair: Welcome back to the 35th meeting of the Joint Committee on Human Rights. It is my great pleasure to welcome our four distinguished and knowledgeable participants to the second panel in our discussion today about the impact that the Bill before Parliament at the present time on assisted dying or assisted suicide—call it what you will—might have on the human rights of disabled people. We are trying to probe those questions.
We have four people. Jean Eveleigh is a patron of My Death, My Decision. She has Ehlers-Danlos syndrome, which is a genetic degenerative condition that brings with it many personal and physical challenges, including the ability to move, eat, speak and breathe without assistance and support. Her campaign group wants the law in England and Wales to allow those who are terminally ill or intolerably suffering the option of a legal, safe and compassionate assisted death.
We have Professor Hollins, who is a Cross-Bench life peer and emeritus professor of psychiatry of learning disability at City St George’s, University of London. Sheila Hollins was president of the Royal College of Psychiatrists from 2005 to 2008. In 1989, she founded the visual literacy charity Books Beyond Words to produce word-free books for people with learning disabilities. She is the chair and series editor of Beyond Words.
We have Dr Henry Marsh CBE, who is a neurosurgeon who until 2015 served as the senior consultant at St George’s Hospital, working within the UK’s leading brain surgery unit. In April 2021, it was announced that Dr Marsh had been diagnosed with advanced prostate cancer. He is also author of Do No Harm: Stories of Life, Death and Brain Surgery.
We have Liz Carr, who is an English actress, comedian, broadcaster and international disability rights activist. A Merseysider by birth, Liz Carr has been disabled from the age of seven. She uses a wheelchair and has done since the age of 11.[1] In 2024 she presented the BBC documentary “Better Off Dead?”, advocating against assisted suicide, and is well known from her role between 2013 and 2020 in the BBC crime drama “Silent Witness”.
Again, before turning to each of you individually with specific questions, let us put a general question. The public debate on this Bill has been pretty heated and varied. Has the debate reflected the important points relating to the potential impact on the human rights of disabled people? Beyond the generalities, could you comment on whether the amendments to the Bill are sufficient to allay any concerns that you might have?
Baroness Hollins: There are huge misunderstandings about disability. I speak not as a disabled person, but as somebody with several disabled family members and a professional lifetime as a psychiatrist working with people with learning disabilities and autistic people.
My experience, both professionally and personally, is that disabled people experience such significant discrimination and inequality in health care. It is society’s attitudes, as well as the resources available, that determine whether disabled people enjoy equal rights. This particular Bill poses particular risks for people who are discriminated against and who are dependent on other people for care and support. I could say much more, and I can speak personally, professionally or generally.
The Chair: Thank you very much. That is a good curtain-raiser. We will come back to you later with more detailed questions.
Dr Henry Marsh: I agree. As a neurosurgeon, I dealt with many disabled patients. I did paediatric neurosurgery and followed many of these children through into adulthood. There is no question that disabled people are hugely disadvantaged in our society, although that is not unique to England, by any means. My own feeling is that the Bill has satisfactory safeguards, but we will come on to the question of evidence later.
Jean Eveleigh: I am not an academic. I am only a person who has a disability, who lives with it and who experiences the NHS and society, et cetera, from that standpoint. Could the Bill be better? Every Bill that ever goes through Parliament could be better. When you are starting from a position of zero, anything is better than nothing. Anything that can provide equality and protections has to be looked at seriously. That is what we are here to do.
The Chair: Thank you for being here today.
Liz Carr: I want to thank the Chair and the committee for having this session. I feel that this session is testimony to the absence of the disability voice in the progress of the Bill so far. We feel very much that disabled people have a unique perspective because a lot of our experiences cross over with terminal illness. They are often one and the same.
The absence of our involvement has led to disability rights organisations making a formal complaint to the UN Convention on the Rights of Persons with Disabilities. In the interim, I appreciate having the opportunity to give evidence today.
The Chair: Thank you. As I said, you are all very welcome here today. Lord Dholakia has a question directly to Jean Eveleigh.
Q11 Lord Dholakia: Do you think that changes to the quality of services and palliative care would impact how individuals may come to a decision about assisted dying?
Jean Eveleigh: They would, in the sense that having and being able to actively participate in every option that is available on the table would better inform the decision, but there are a cohort of people who, no matter how great palliative care is, no matter how loving their family is and no matter how much medication they are given, just cannot have what they would decide is a good death. They should be given the choice to decide how they want to die. It should not be a decision that is forced upon them by anybody else.
If I may come back to Ms Carr and the point about disabled people not being involved in the process, through written and oral testimonies, this is the seventh time I have given evidence on this Bill. At every stage, there have been other disabled people giving evidence as well as myself, so to say that disabled people have not been involved in this Bill is inaccurate. Whether you agree with how many disabled people have been involved is a different decision.
Liz Carr: It is also about the contribution, though, with respect. The health and equalities commission have also contributed in terms of looking at the impact of a Bill such as this. The impact assessment, which I am sure we will get on to, really looks at the access to the law, not at the barriers, the restrictions and the dangers. We might have been there in the room, and you might see a wheelchair user in the room, but that does not mean that our contribution has got to the heart of what this really means and how it would affect our community.
Q12 Afzal Khan: Baroness Hollins, do you feel that the approach to the assessment of capacity in this Bill, as it currently stands, appropriately considers disability?
Baroness Hollins: I am really worried about the approach to capacity. I do not think that the Mental Capacity Act is appropriate. I have recently published a paper on this. It is an editorial in the journal BMJ Supportive & Palliative Care about decision-making and capacity assessment.
The problem is that the Mental Capacity Act—and I did sit on the post-legislative scrutiny committee for it—assumes capacity. This is such an important decision. If we take people with learning disabilities, for example, it is really tricky to know whether somebody truly understands.
In some ways, they have adopted an assumption of capacity in the Netherlands, and I did another piece of research that has also been published. There have been two or three papers on it, but there was one in 2018 in BMC Medical Ethics, which was looking at euthanasia and assisted suicide for people with intellectual disability and autism in the Netherlands.
They only publish about 4% of the cases. Over a four-year period, we found 39 cases out of 416 case summaries. We found cases of people with intellectual disability and autism who had been euthanised, but there seemed to be very little attempt to understand whether they had capacity for this to take place.
There is a real risk about this, because it sounds simple, but it just is not. The Royal College of Psychiatrists totally agrees. It does not wish to be involved. Psychiatrists do not believe that they have the skills to determine capacity for anybody to be able to make this judgment for themselves. I am not sure whether that answers your question.
Afzal Khan: Can I just ask you a supplementary on this? Will the assessing doctors and the multidisciplinary panel have the ability, resources and expertise needed to make a reasonable assessment of capacity?
Baroness Hollins: No, I do not believe that they do. There are three amendments down, proposing three alternatives to using the Mental Capacity Act. Baroness Finlay has placed one, Lord Carlile has placed one, and I have put one down. The one that I have put down is what is recommended by the British Psychological Society. The idea would be to introduce an entirely new framework for the assessment of capacity, which leaves the Mental Capacity Act alone but looks afresh, and comes up with a framework for assessment of capacity and involves clinical psychologists. That is a possibility. The idea of using a judicial process may be better. Lawyers might be better at this, to be honest.
The Chair: Before we move on, it is such an important point that you have just raised. If the royal college says that it does not have the capacity and you are saying that you do not think the multidisciplinary committee would have the capacity, that is clearly something that we need to probe.
Q13 Lord Sewell of Sanderstead: Baroness, the decision to not get involved in the capacity issues seems to be strange. Surely psychologists and psychiatrists are called in courts to give evidence on whether somebody is going to have a particular sentence, or they are going to be put in a particular capacity in terms of provisions around mental health, or they are going to be put into another space where their sentence could be looked at. My point here is that, if it is the case that you are making decisions in other areas, what is the difference?
Baroness Hollins: You are talking about people with mental illness. Although, of course, mental illness is a disabling condition and may be part of what is being presented here, we are talking about a much broader group of disabled people. There is also, of course, the issue of fluctuating capacity and all those kinds of issues.
It is different. If you stick to the Mental Capacity Act, it is an Act that assumes capacity unless there is any concern that the person may not have capacity, and that is the difficulty. That is a real problem, because this is not a decision that requires you simply to assume capacity. There is a contradiction. It says that the assisted dying review panel must ascertain whether the person has capacity to make the decision to end their own life, but that is contradictory to what the Mental Capacity Act requires, which is that a person must be assumed to have capacity unless it is established that they lack capacity. There is no requirement to assess capacity unless there is a question raised.
We debated the Act at the post-legislative scrutiny committee. I know that it was debated extensively before that Act was passed. There are a lot of problems with the Mental Capacity Act. It is not working as efficiently and effectively as it should. It might have been good to have heard from the current chair of the National Mental Capacity Forum on this matter, who has grave concerns about how the Act is working in practice.
The Chair: It might be helpful, Baroness Hollins, if you are able to make that information available to the committee in writing subsequently. It would be very helpful for us also to have a copy of the paper that you referred to, which you wrote in 2017, to put into our record. Let us turn, if we may, though, to Dr Marsh and other panellists on this question about capacity.
Dr Henry Marsh: It is not my area of expertise. I am not a psychiatrist. What I would like to say is that the history of medicine is all about evidence. There is, of course, a lot of evidence because there are many countries in the world where assisted dying in one of its various forms is permitted. There is quite a lot of academic literature and peer review journals looking at the question of whether there is evidence that disabled vulnerable people are overrepresented in the population of people requesting an assisted death.
There is a large number of papers, but nobody has found any evidence that that is the case. In fact, in one study, I think in the Journal of the American Medical Association, in Oregon and the Netherlands, which have had assisted dying in different forms for decades, people who would be considered disabled and vulnerable were underrepresented in the cohort of people wanting an assisted death. The only consistent predictor in most of these studies of people requesting an assisted death is higher education.
Again, it is important when you have the discussion on capacity. If one is starting to quote evidence from the Netherlands, we are talking about people who are going to die in six months’ time anyway. They are not choosing death over life. They are choosing how they are going to die. Of course, according to the Mental Capacity Act, whatever its failures may be—and I am not an expert there—we are allowed to refuse treatment even if it results in our death, so it is slightly inconsistent that we can choose to die but we have no choice on how or when.
Jean Eveleigh: I would agree with that. The issue of capacity fluctuates depending on condition, but it also fluctuates depending on diagnosis. As soon as you receive a diagnosis, especially if it is a terminal illness, it is going to be a huge shock, and so you are going to have mental health issues alongside that, such as depression, or maybe suicidal ideation, et cetera, but that should not preclude you from taking part in the process if you meet the definition of capacity. If you can clearly understand what that terminal illness is going to do and what the definitions of the timeline are going to do, you can clearly distinguish and make a choice around what you want to do because of that.
In this sense, capacity will come down to conditions such as Alzheimer’s or autism, where people will lose their capacity because of their health, but they would not have access to this law anyway because they do not have a terminal illness. The starting point is that you have to have a terminal illness and you have to have a reasonable sense that you will be dead within six months. Disability is irrelevant to that. Disability is an add-on factor after the terminal illness and the expectation of death.
Liz Carr: We know that the Royal College of Psychiatrists is finding the Bill and the analysis of capacity problematic. Of course, when somebody wants an assisted suicide, the reality would be trying to get an appointment at your local GP practice, and the doctor who you see being the first level of assessing you. We are not talking about huge levels of expertise in terms of the kind of capacity that we are looking at. We are talking about very skilled people who deal with capacity for treatment every day, but this is about capacity to end your life at a time when you are experiencing things that you will probably never have experienced before. As Jean said, you will be in trauma. We all acknowledge the shock to the system of having a diagnosis like that.
Dr Marsh mentioned Oregon, where we know that the ability to call in mental health and psychiatry expertise for an assessment has reduced over the decades. It is barely used now. Does that mean that it is not an issue? I would argue that it does not. I would argue that what it means is that we have now got to a point where, when people are terminally ill, as long as it feels fairly obvious at first sight that they have capacity, we now assume that a desire to end your life is normal; it is normalised and acceptable. That is where it is problematic. We need to probe more deeply into why people want that and whether any support would change their minds, and we are not providing that with what is in the Bill at this point.
Baroness Hollins: Can I just add a point about the question of disabled people and their presence in populations that have chosen an assisted death? The 2024 report on medical aid in dying from Canada, for deaths in 2023, found that 40% of people having an assisted death or euthanasia identified as disabled people.
The Chair: Thank you for that clarification. The data on that would be very helpful to the committee.
Q14 Lord Murray of Blidworth: This question moves the conversation on a little bit to look at the way in which you view the Bill as to whether, in your view, it currently takes reasonable steps to disentangle the issues of disability and mental disorder from terminal illness. I am sure that you will all be aware of the provision in Clause 2(4) of the Bill that seeks to provide that disability and mental disorder are not, of themselves, sufficient to count as terminal illness. This clause is held up as a safeguard for disabled people. To what extent do the panel think that is right? Perhaps I could start with Ms Carr.
Liz Carr: There is such a fine line around terminal illness. There is in terms of prognosis, and I am sure that that has been spoken about in the previous panel as well. Anecdotally, we know that many people exist far beyond their six-month capacity. I remember meeting Jeanette Hall when I went to Oregon 15 years ago. She had voted for the Oregon law and had wanted to avail herself of assisted suicide and the death with dignity law that they had there in the late 1990s. She is still alive, but she qualified at that point, and we can all come up with those.
Yes, there is an exclusion, but terminally ill people, by definition in the Equality Act, are disabled people. The majority of them will become disabled and have the trappings of that, to the point that, up until really recently, every main case being taken to the courts of somebody asking for assisted suicide to be legalised has been a disabled person rather than a terminally ill person. That is why we are one and the same. I know that, if I believed that I was suffering and wanted assistance to end my life, it would not take a lot to convince somebody of that. Yes, it is great that it is in there, but it is such a spurious definition between terminal illness and disability that I believe that it is still problematic.
Jean Eveleigh: I agree with Liz Carr that the definition of somebody being terminally ill gives them a definition of a disability by the very fact that their illness is creating disabilities in terms of the ability to breathe, to move, to toilet, to eat and so on, but the disability is not going to allow them to have access to this law. They cannot go to the panel and say, “Because I can no longer eat and I need somebody to feed me, I want to have an assisted death”. They have to have that terminal diagnosis and the reasonable assessment that they will die within six months.
Yes, they could last another seven or 15 years, but just because they have access to the law, just because they qualify under the provisions, and just because they pass the assessment and they are told, “Yes, you can have an assisted death”, that does not mean that they will then go ahead and do so.
Statistics from around the world say that, of the cohort of people who apply for an assisted dying law, a third will die before they complete the assessment phase anyway, a third will complete the assessment phase but then decide that they do not want to have an assisted death, and a third will then go on to take the drugs or whatever the law in that state says they are allowed to do to end their lives when they want to. Just because you go through the process, that does not mean that you will end up availing yourself of the law.
Not having a law at the moment is what is causing problems. There are no statistics on how many people who are disabled or terminally ill commit suicide because there is no law to protect them. There are no safeguards at the moment, so there is no one looking at how many of those people who do commit suicide or refuse treatment are doing so because they are being coerced by family and other carers. We have no system to assess that at the moment, and no legal recourse to produce any evidence to find out what the problem is.
This law is going to be improving things from the zero state that we have now. Whether it is a bad law is for other people to decide, but having nothing is causing problems. Having something, even if it is only 1% or 2%, has to be better than nothing.
Baroness Hollins: It is difficult to distinguish when it is the disability that is the reason for somebody feeling that their life is not worth living, or their terminal illness. My husband died of motor neurone disease earlier this year. He was a disabled man when he died. He was not before he became terminally ill. We had some really interesting conversations about this subject.
There is not a straightforward yes-or-no answer to your question, because it raises all the sorts of issues that you were raising. There are potential concerns around people who might be able to access assisted dying services more quickly—for example, the disability benefits or resources that they need. My husband was still waiting for his wheelchair when he died. Some of that is to do with the fact that NHS staff seem very loath to refer you for assistance that you might need until you need it, and then there is a waiting list. You can imagine that you are there needing something and not getting it, and that is not going to help your mental state. It is not going to help you to manage your everyday life. It is quite a complicated area.
There is a much higher rate of suicide for disabled people than for non‑disabled people, which also makes me worry that a decision to choose an assisted death rather than to wait for the care and support that you need might be something that more disabled people would seek out proportionally compared to the number of people in society. For example, four times as many disabled women and three times as many disabled men take their own lives in the United Kingdom.
Dr Henry Marsh: Every time I operate, there is a risk that I will do more harm than good. It is the nature of medicine. It is all about balancing costs against benefits. I worked for five years for NICE—the National Institute for Health and Care Excellence—where we were carrying out all these endless cost-benefit analyses and what the balance of risk and benefit was. You have to do that on the basis of evidence rather than purely hypotheticals. It is extremely difficult, but what we know for a fact is that many people die badly in this country. We know from the ONS study that the suicide rate in people with non-survivable cancer is three times that of matched controls. We know that many people, if they have the money, opt to go to Switzerland, so there is a demand for it from people with, presumably, full mental capacity.
To weigh against that, you have these very difficult but, essentially, hypothetical arguments, mainly, not justified, in my opinion, from the evidence of the many countries where assisted dying is practised. Given that assisted dying is available in so many countries, why has there been so little pushback against it in these countries, except in Canada, where there have been problems with the legislation? I fully accept that. Canada is a bit of an outlier.
The function of medicine is to preserve life and to preserve health, but also to reduce suffering. Palliative care is about reducing suffering. I have co‑founded a charity to support palliative care in Ukraine. I see assisted dying as a form of treatment for suffering, and it should be subject to the same analysis of cost and benefit on the basis of evidence as you do with any other treatment. If you introduce a new treatment, you have to collect the data carefully, as you do with new drugs. You could look at this question of whether there is evidence that disabled people are being disproportionately hurt by things such as that. You collect the evidence and then you make things better, hopefully.
Lord Murray of Blidworth: Dr Marsh, can I bring you back to the Bill? The question focused on whether the panel thought the steps and the protections provided in the Bill that we are currently looking at are adequate to disentangle assessments of disability and mental disorder from terminal illness.
Dr Henry Marsh: It is a starting point. I would say you introduce the Bill and then you carefully collect data after it is functioning to see how it works, and adjust it as necessary.
Lord Murray of Blidworth: Do you think that the threshold will broaden after implementation?
Dr Henry Marsh: It is very unlikely, given that it has been so difficult to get this far in the first place. The slippery slope is an extremely sticky one. Purely philosophically, the slippery slope argument is a very dubious one. It is ridiculous to think that, suddenly, all hell will break loose and we will be like the Netherlands, Belgium and Switzerland and all the other countries that have a much wider criterion for an assessment.
Lord Murray of Blidworth: You are on record as saying that, if there are some cases of coercion, the greater public good is satisfied by having the system. Is that fair?
Dr Henry Marsh: In principle, yes. I know that I made a very crass comment about sacrificing grannies. I greatly regret it. I wish I had not said it.
Lord Murray of Blidworth: You did not want to say it like that.
Dr Henry Marsh: It was very stupid of me. I did not realise that it was going to get into the public domain. The principle is that there is always a cost. Every time you operate—and it is not a theoretical risk—you can make things worse, but you justify that risk by saying that more people benefit. It sounds rather inhumane and utilitarian, but that is the reality of normal medical practice.
The Chair: Dr Marsh, thank you for your candour on that. That is appreciated.
Q15 Tom Gordon: We heard earlier from a number of you who mentioned the point about the inequalities of people with disabilities when it comes to accessing healthcare and general societal barriers. One of the things that has been really stark to me in today’s evidence sessions, and prior to today, is the fact that I have raised concerns about the fact that we keep treating disabled people as a single homogenous group.
In reality, when I sat on that Bill Committee, when the Bill was going through the House of Commons, we heard from people who really made the case about intersectionality and disabled people, whether they be white or not, or whether they be rich or poor. What worries me about today and this evidence session is that we are looking at this through a very single, white lens and are not taking into account the views of disabled people in the round.
I just wondered if any of the panellists might be able to comment on that. One of the things that I talked about before today was making sure that we had a wider inquiry, looking at all protected characteristics. The Joint Committee on Human Rights is not meant to just look solely at disability. It is an important part.
To another earlier point, we talked about disabled people not necessarily having been in the room. One of the key architects of some of the amendments to the Bill in the House of Commons was Marie Tidball, who lives with disabilities and put in place things such as the disability advisory board and the independent advocate. I do not know whether you might be able to comment on how we capture the full spread of disabled people and those intersectional aspects, and also the improvements that have been made specifically in regard to disability already.
The Chair: Let us start with Liz Carr, who was affirmative of the Joint Committee on Human Rights holding this session. Of course, there is nothing to stop us holding other sessions about other people with characteristics that are listed. Whether they are affected as much as people from the community that we are talking about today is, of course, a matter of argument, but let me bring you in first, and then we will go to Jean Eveleigh.
Liz Carr: You were on the Committee in the Commons, where disabled and deaf people’s organisations struggled to get heard. There was a 24-hour notice only after media pressure to get Disability Rights UK to present. I know that there were individuals, but you are absolutely right about the lack of intersectionality, and this really hits at that.
Dr Marsh mentioned—I will come back; I will try not to forget, but reel me in if I do—that the figures often show that disabled and racialised people are missing from the statistics. That is because those groups are afraid as well. We are rightfully afraid of these laws. My experience of talking to people all over the world is that those people who support these laws often look like the lawmakers and the doctors making them. They are less afraid of the systems, the state and the NHS.
Laws are often, in fact, crudely passed. In Oregon they always said that the Death with Dignity Act was about the four Ws—white, worried, well and well-off—rather than other groups of people. We absolutely have that too. There are intersectionality issues in terms of people from different groups, and poverty and class are huge issues here, so I would absolutely welcome this being the beginning, rather than just a one-off.
Jean Eveleigh: I live in Newham, in east London, which is a highly ethnic area. I have done work in the past with the adult and children’s social services board on procurement. I have been in rooms where there have been lots of people who do not look like me, because they have disability either themselves or within their families. What I have found is that people from an ethnic origin have a lot more homogenous family life, so the people within their family are a lot more willing to support them for the long term than is the case for white people. One of the reasons why white people are more willing to access this service is because they do not feel that they have that support, care and love within their family setting.
The feeling that we need to have more voices in the conversation is always going to be a positive. There is no way in which you can that say that having fewer voices is going to make a better Bill. The more people you want to speak to, great, but the problem is the time. At the moment, we are looking at a four-year implementation, and so, even if this Bill passes, it is going to be at least 2030 before it comes into effect. How many people are going to suffer in that timeframe who could have been supported by this Bill? Why is it that society is dictating, “You have to suffer because I do not agree with you making your own choice”?
Dr Henry Marsh: I was getting a bit confused. As I said earlier, the demography of people asking for an assisted death in other countries is mainly educated, white people, but is that an argument that disabled people are not getting enough access to assisted dying? I am a bit muddled.
Baroness Hollins: A woman with a learning disability used to work with me at St George’s, teaching medical students. She was quite a capable person. She could not read or write, but she was a very good teacher. She was teaching future doctors how to communicate with people with learning disabilities. She would come out with some wonderful things. One of them was having a triple-whammy. A triple-whammy was what we might call intersectionality. She is a black woman from south London. She also had some mental health problems. Her mother had died when she was a teenager. She struggled to get the support and the help that she needed.
When you put all of those things together, she is one of the people who is worried. She rings me from time to time. She says, “I do not like what I am hearing about this Bill”. She listens to the news. She does not like it.
My daughter, who has a high-level spinal injury, is a mother. You could call that another kind of intersectionality, if you like, as a disabled person. She has some different pressures and different issues. She tries not to engage in this kind of discussion, but she said to me—and she would be delighted that I wanted to say this—that she is scared of what this Bill could bring.
I did not really reply to Lord Murray properly. You were asking about safeguards. I have introduced something that is an absolutely fundamental safeguard to the Bill and that is right up front, which is that, instead of a preliminary discussion with any registered doctor, you have a right to a multidisciplinary assessment by fully qualified people and a right to be offered the care and support that the assessment identifies. Then you have a choice. At the moment, there is no choice, or not enough choice, because a lot of people are choosing or would choose this because they are not getting the care and support that they need.
This is just such a complicated area. That is the safeguard that I would like to see in place—a proper assessment, with proper provision of care and support. Then you can choose and say, “I do not want that. I want to get it over and done with now”. That is a choice. At the moment, there is no choice. To have a choice, you have to have two options—A and B. We only have B now, or A.
Tom Gordon: One of the points that I made was around the amendments that were made in the Commons around the independent advocate or the disability advisory board. Does anyone have any thoughts, comments or views on how those would impact disabled people?
Baroness Hollins: I have seen, in a way, the failure of independent advocacy in mental health legislation. People do not feel that they are being properly represented and heard, and yet I know how important advocacy is. Again, my daughter said that I could say this if it was relevant. When she was first injured, she was at St George’s. The neurosurgeon did not want her to be resuscitated, because he said the quality of her life would be so poor. That was the assumption.
Dr Henry Marsh: It was not me, was it?
Baroness Hollins: No, it was not you. It was a successor of yours. He said that her life would not be worth living, and he did not want to admit her. It is only because I was there as an advocate, essentially. It is only because I understood what he was talking about that I said, “Please admit her”. Twenty years on, she has three children. She is living a wonderful life. Yes, she has a high-level spinal injury, and yes, her life is different, but do you know what? She is scared of this Bill. She needed advocacy. Whenever she goes into hospital, she needs advocacy. I am not sure that the independent advocate envisaged in this Bill would do what is required.
Liz Carr: In terms of the disability advisory group, it would need to be independent, and there would need to be real co-production with disability groups. I know that we can debate what “disabled” and “disability” mean, but, in terms of disability rights organisations, for everyone in the UK and internationally, this is a group of people who, because of things such as those that Baroness Hollins has just said, fear that experience.
I am in a wheelchair. I know that we have different views, but I am sure that the majority of disabled people—I am talking also about people with learning difficulties or with mental health issues—have experienced a devaluation at the hands of health professionals. That is terrifying. The one safeguard that there currently is, and that I feel safe with—and maybe I say this from a privileged position—is that assisted suicide remains a criminal act.
Once it becomes a medical treatment, that is when it terrifies me, because it happens behind closed doors and is based on medical subjectivity. Those doctors and whoever are making those decisions have the same biases and the same prejudices and pressures every single day that view disabled people often as better off dead, and their lives as having less value. We saw it during Covid. We saw it with the increased use of DNARs on disabled people. We heard very painful anecdotes from Baroness Campbell when she talked about going in for a chest infection and ending up with a DNAR on her notes. This is the reality. That is why, as a community, many or all disability rights organisations are afraid of this Bill.
Q16 Sir Desmond Swayne: I was going to begin with that “better off dead” argument and the systemic discrimination that exists, but we have had that conversation. Let me ask you about another aspect of coercion. The Bill is quite clear in that the decision must be voluntary and has not been coerced or pressured by any other person. We had Lord Carlile in the last session, and he said that the word “pressure” is not a legal term. There is no other Bill that deals with pressure.
Given the dynamics of families, and particularly those that have the additional stress of dealing with disability, to what extent are you content that the panel will have sufficient resource and capability to assess whether coercion exists, or would you prefer it to go back to the status quo ante, as the original Bill was, whereby it goes back to the Family Division of the High Court?
Jean Eveleigh: I do not have any particular problem with the family court as well as the safeguards that are already in place. At the moment, you have to convince eight people that you have not been coerced or pressured. That is a high number of people to convince that nothing has gone wrong and that nobody has pressured you.
I agree with what Liz Carr said about systemic pressures and the lack of help within the NHS. I am frightened every time I go to the doctor. I have been told by a doctor, “There is no point coming to me without evidence for what you need, because I just do not have the time or ability to do the research into your condition. You need to produce evidence to tell me why you are seeing me and what you want me to give you”. I should not have to do that. I do not have the medical training to be able to do that.
I have had problems around access to advocates. Why I am able to sit here today is because I have learned how to advocate for myself, but, if I lose the ability to speak, I am not going to be able to do that anymore. These are all very real pressures and very real problems, but, with respect, that is your job, not ours. It is down to the funding that you provide to the NHS and to the advocacy programmes, et cetera, to deal with it. Us just sitting here shouting at you all the time, “This is a problem. This is a problem”, and you not doing anything about it is your fault, not ours.
On the issue of coercion, respectfully, there is a legal definition of “coercion”. If you look at criminal law, duress is coercion, and duress is already defined within criminal law. It is defined as a way to acquit people of an offence. Why not just move it over to this Bill and define it as a way to convict people of an offence?
Sir Desmond Swayne: It is “pressure”. “Pressure” is the word.
Jean Eveleigh: Yes, but you can change “pressure” for “duress”. It means the same thing, but duress is legally defined now, so it would be much easier to make a criminal conviction for that.
Liz Carr: As I understand it, the panel do not currently have to see the person, and they do not have to communicate with the family. That is an issue. “Liz, do you want to go ahead with this?” “Yes”. “Are you being coerced?” “No, I am not”. “Are you sure? Is everything at home fine? “Yes, it is absolutely fine”. What more than that is going to be done? I am not saying it is as simple as that, but coercion, pressure and duress are manifold.
We have talked about systemic pressure. “Do you know what? Everything is so difficult. I cannot get a care package so that I can get out of bed. I am sitting in wetness; I am sitting in nappies, and I should not have to live like this. I want to die because the support is not there for me to live”. That is duress.
“I feel that I am a burden on my loved ones. I want them to have a life”. There are no amendments that said that to feel a burden is problematic. We seem okay that people might feel like they are a burden. That is a pressure and that is a duress.
The worst, though, is when people will believe it about themselves, and that is a fear with the Bill: that people will choose it because there is no choice, because they believe that they cannot have alternatives. That is terminal illness. That is terminal illness and disability.
Should we not have a greater standard of responsibility, of providing support and a good death for people at the end of their lives, rather than focusing on this one option for a small group of people, when there is a much bigger group of people who are suffering at the end of life now? They are dying in corridors. They are dying because they do not get the drugs because NICE has not approved them. They are dying because there is not the right support and funding into palliative care. That is suffering.
Sir Desmond Swayne: Are there any safeguards or changes that could be made to the Bill that would remove the discrimination against disabled people that are inherent within it?
Liz Carr: Can I read what I wrote on this? It is one sentence. I was hoping you would ask me this question. For me, as long as terminally ill and disabled people’s lives are viewed as lesser, that human rights abuses continue and disability discrimination is systemic, no safeguard can ever truly mitigate risk. Without equality for marginalised groups, safeguards are little more than tick-box criteria in a Bill that defines some of us as disposable.
I cannot understand how any safeguard will be sufficient as long as there are groups who are already on the back foot and are already being discriminated against. We are already at a disadvantage, so safeguards, by their nature acknowledging risk, cannot protect us.
Baroness Hollins: You were asking about coercion. When I consider people with learning disabilities and people with Down syndrome, for example, there are many people who are extremely suggestible. If any suggestion is made, if anything was raised with them, it would feel like coercion. I think it would be coercion. For that reason, I think one safeguard would be to make it absolutely the case that nobody could raise a subject with a person with a learning disability.
I know, for example, for my son, who has a learning disability, that if other people look at him in any way to suggest a lack of respect or have an attitude, he will pick it up and respond to it. He is so sensitive to other people’s attitudes towards him.
I know, when my husband was dying, some of the conversations that took place with medical professionals about whether there was any point in him having treatment were very distressing and were of the kind that could so easily have been, “Why don’t you take the drugs now?” It was that sort of conversation. It was only that I was there to turn the conversation around and change it, but the coercion inherent in those conversations makes it very dangerous, in a very pressured, tired medical environment such as we have at the moment. The risks are huge.
I just do not want doctors involved in this. Let them get on with treatment. I disagree with my esteemed former colleague here. This is not a treatment; it cannot be a treatment. It is something quite different. It would be a fixed dose of a substance that somebody would take themselves. It does not need to involve doctors at all. This Bill is far too complicated and introduces all sorts of dangers, which in a simpler Bill would not be there. The safeguard is to take out an awful lot of what is in it and make it simpler.
Dr Henry Marsh: I have no new comment to make other than there are always risks. Nothing is perfect. A lot of people are suffering bad deaths in this country. I am afraid that the state of the NHS is abysmal, and palliative care is not properly funded, but I think it is highly unlikely that there will be better funding of palliative care in the future. We have a large number of people who will die badly. It may well apply to me. We should not discuss this in terms of anecdotes, but I may well end up like many of the patients I operated on, with paralysis and prostate cancer spreading to the spine.
I may not want an assisted death, but, if I do, I would like to think, “If I have a duty to suffer, can we have some very clear evidence that this is definitely going to help other people?” Many of these arguments are hypothetical. If you look internationally, as far as I can see, a lot of these objections are not borne out.
The Chair: No one who has been watching or listening to this hearing could doubt that we have heard the full range of views across the spectrum, and there is a lot here for us to reflect on and ponder.
Q17 Lord Sewell of Sanderstead: Is there a way of avoiding discrimination when considering whether individuals have autonomy to make decisions? When individuals are asked to be autonomous, in the sense of making literally life-and-death decisions, is there a way in which we can avoid discrimination in that process?
Dr Henry Marsh: I am afraid I am lost.
Lord Sewell of Sanderstead: The question is driving at whether the discrimination is based on your own individual prejudices or your sense of—
Dr Henry Marsh: Discrimination by whom?
Lord Sewell of Sanderstead: I mean by the practitioner or doctor.
Dr Henry Marsh: I agree. Doctors are often very prejudiced, which is why, in the context of assisted dying, you need people who have been specially trained and more than one person involved. I fully agree that it is a very subjective business. Doctors often discriminate, without a doubt.
Baroness Hollins: I agree.
Jean Eveleigh: I agree. There is no way to remove inherent bias and discrimination. All you can do is put proper funding into proper training and proper evidence-based statistical research at the end of that. If you have a group of specialist doctors, for example, you would then be able to see how many people each doctor has referred on to palliative care or on to an assisted death. You would then be able to see which doctors are biased in which direction. At the moment, you have no statistics, no data and no way of knowing.
How many doctors do, as has been suggested, towards the end of life heavily suggest to their patients that they stop treatment, that they withdraw certain drugs, or that they withdraw certain aids, because that will, effectively, help them? How many times have we had cases go to the courts where patients have wanted to continue treatment, but the doctors have wanted to remove treatment from them? How many times have we had patients go to the courts because there are drugs available, but the NHS is refusing to fund them?
At the moment, doctors are inherently making life-or-death decisions about patients, for patients, that patients disagree with. This Bill is about giving the patient more choice, not giving the doctors less choice.
Q18 The Chair: It is an important point you are making about striking the right balance, is it not, between autonomy on one hand and discrimination on the other? What I gather from what you have been saying throughout the hearing is that, at the very minimum, you would expect data to be collected and for this to be assessed on a regular basis in case that balance is not met. Is that right?
Jean Eveleigh: Yes, because that would then improve the law. You have the data. You can then see where the flaws are, and you can then make improvements.
The Chair: That is helpful.
Liz Carr: The problem with a three-hour training course on how to treat disabled people or how to look for coercion, or any of the training that there might be as part of this law, is what we see happening in Oregon, in any of the 11 states where it is happening, or in Canada, for example. The practitioners tend to be the same doctors. There are a small number of doctors who will do this. If you do not get the answer that you want, you will go to another doctor. There is no reporting of that. It does not come up on your notes that you have tried before. That is one thing that I would say. The data-collecting is about general demographics and very little other information.
In Washington, the second state in the US to adopt assisted suicide, a lack of money by the health authority means that, from this year onwards, there will no longer be data collected. That does not mean that is how it would be here, but data does not tells the whole story. In actual fact, when you make this a decision that happens behind closed doors, with a subjective doctor, on a good day or a bad day, with those biases—and we see those biases happening all the time—that is why I do not believe this law would empower patients; it would indemnify doctors instead.
Lord Sewell of Sanderstead: It seems like you are saying that it is one doctor in a closed space. Would a panel be better? Would that help?
Liz Carr: I see it is coming out of there. As someone that relies on the state for my existence, in terms of the NHS and social care, having these decisions in the hands of those people, i.e. doctors and medical practitioners who can raise this—Baroness Hollins brought that up too—is where, for me, the dangers are. The panel has been watered down, and I still believe, as I said earlier, that there is an inherent bias that those people have towards disability.
We live in a society that sees disability as a fate worse than death. The assumption made is often that death is a release and is an understandable choice that we would make. Because of that, I worry that there would not be the real looking and analysing of whether this was a free, settled and clear intention.
The Chair: Thank you very much. The clock is now beating us. We said we would finish at 4.15, and we are almost there. I would like to thank the four participants this afternoon who have spoken movingly and given us powerful evidence from different points of view. All of it is a challenge to all of us. In fact, Jean Eveleigh said this: that it is up to parliamentarians and people in public life to take these issues around disability very seriously indeed. I can assure you that the Joint Committee on Human Rights does. Far from being the end of engagement, I hope that this will be the beginning of more engagement by this Committee around issues affecting not just disabled people but other people with protected characteristics as well.
We have a very heavy workload. We have been supported and aided by the four of you today. Dr Marsh, Baroness Hollins, Jean Eveleigh and Liz Carr, thank you very much indeed for joining us today. We are enormously in your debt. With that, I conclude our proceedings.
