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

Kim Leadbeater Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[Lewis Atkinson]

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.

[Kim Leadbeater (Spen Valley) (Lab)]

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.

[Kim Leadbeater]

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.

[Jake Richards (Rother Valley) (Lab)]

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.

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[Lewis Atkinson]

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.

[Kim Leadbeater]

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—

[The Chair]

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.

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[Kim Leadbeater]

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.

[Kim Leadbeater]

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.

[Kim Leadbeater]

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.

[Kim Leadbeater]

Thank you.

[Jake Richards]

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.

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[Kim Leadbeater]

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.

[The Chair]

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.

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[Jack Abbott]

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.

[Kim Leadbeater]

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.

[Kim Leadbeater]

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.

[Kim Leadbeater]

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

[The Chair]

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?

[Kim Leadbeater]

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.

[The Chair]

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.