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

Lewis Atkinson Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[Rebecca Paul]

Don’t worry. Thank you very much.

[Lewis Atkinson (Sunderland Central) (Lab)]

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?

[Lewis Atkinson]

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.

[Lewis Atkinson]

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.

[Lewis Atkinson]

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.

[Lewis Atkinson]

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.

[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.

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[Naz Shah]

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.

[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—

--- Later in debate ---

[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.

[Lewis Atkinson]

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?

[The Chair]

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

[Lewis Atkinson]

No.

[Rebecca Paul]

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.