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

Danny Kruger Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

[The Chair]

It is one question, one answer. I call Danny Kruger.

[Danny Kruger (East Wiltshire) (Con)]

Q Professor Hoyano, what do you think about the indemnity against civil liability in the Bill? Do you think it is appropriate to indemnify all doctors, even if they have made a woefully bad diagnosis, botched a prescription or, in some cases, actually caused some harm? Do you think it is appropriate that they be excluded from civil liability?

Professor Hoyano: I always have a problem when tort liability is ruled out by legislation. I think that the accountability of medical professionals, and indeed all medical practitioners in private practice, lies at the heart of how our national health service works, so I have a difficulty with that. I would have to ask Ms Leadbeater whether this is correct, but perhaps the intention was to ensure that members of the family who, for example, were against assisted dying in principle, would not be able to bring an action that could be vexatious against a doctor who had complied with the legislation and should therefore not be troubled with that type of litigation. It might be that that provision could be refined.

[Lewis Atkinson (Sunderland Central) (Lab)]

Q Professor Hoyano, the Bill would establish offences relating to coercion, pressure and so on. In the processes set out, there are a number of checkpoints, for want of a better term, at which a person seeking assisted dying may talk to doctors or others. What are your observations on how the criminal construct of offences is linked to the different opportunities for an individual seeking assisted dying to have conversations? In your view, is it likely to lead to the identification of those offences? How does that contrast with some of the considerations at the moment, where people are withdrawing treatment in a life or death situation, for example?

Professor Hoyano: It is interesting that a number of Members of Parliament who are practising physicians pointed out in the debate that they have to evaluate freedom of decision making and absence of coercion in many different medical contexts. I point particularly to the withdrawal of medical treatment at the request of the patient, even if that will inevitably lead to death. It is considered to be a fundamental human right that lies at the heart of medical law that a patient has personal autonomy to decide what to do with their body and whether or not to accept medical treatment, provided that they have the capacity to do so and are acting without coercion from external sources. Doctors have to make those assessments all the time.

I suggest that it is perhaps a convenient fallacy to say that pulling the plug on a respirator or stopping artificial nutrition and hydration is a negative act, whereas giving a patient a syringe to end their own life is a positive act. I realise that with the Tony Bland case it was convenient to say that, but there is no doubt that most people on the street would say that pulling the plug on a respirator is a positive act, and yet doctors and nurses are required to do that every day in the NHS, because that is the patient’s autonomy. If there is any question about either coercion or capacity, the Court of Protection steps in and has the jurisdiction to make those decisions.

The Court of Protection should, I believe, be the court that is supervising this, not the High Court. Three levels of judges sit in the Court of Protection; I suggest that a High Court judge be specified, which would mean a statutory amendment to extend the jurisdiction of the Court of Protection. The Court of Protection makes decisions every day on whether a patient has the mental capacity to make decisions about their own medical treatment. It is accustomed to doing that, and one aspect of that analysis is whether the patient is being coerced externally.

Generally speaking, when a patient says, “I don’t want to be on a respirator any longer; I know I’m going to die,” we do not ask questions. As I understand it, it is not part of the protocol to say, “Are you doing this because you are worried about being a burden on the NHS?”, because their personal autonomy is the overriding principle governing medical decision making in relation to the patient. I hope that that answers your question.

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[The Chair]

Time allows us to ask more questions. Three people have indicated that they wish to come in. I will start with Danny Kruger.

[Danny Kruger]

Q It is great to hear about the case for common law over the Human Rights Act. Yesterday we heard about parliamentary sovereignty. This is a tremendous process we are having here.

Professor Hoyano said that the person in the street would not see the difference between a patient requesting to die by the withdrawal of treatment versus the active administration of fatal drugs, whereas I think you said, Professor Owen, that you did see a profound difference between that decision on the part of the patient and also, presumably, the act on the part of the medical professional, in the case of either the withdrawal of treatment or the administration of fatal medication. You said that you would be happy to draw that out; could you do so?

Professor Owen: Yes. I am happy to try now, but also to do it further with some written submissions if that would be helpful, because it is such an important point. First, for the man on the street, or the person on the bus, one thing to remember—this comes out in the public opinion polling—is that when you ask about assisted dying, some people think that that is access to palliative care. There is a degree of misconceptions that are out there in the public that are important to bear in mind.

On the distinction between the decision around the refusal of life-sustaining treatment and the decision regarding assisted dying, what are the similarities? Well, they are both about life and death. What are the differences? One is a refusal; one is a request. One is traditionally considered to be about bodily integrity—it is the so-called shield of the person, or the patient, against the intervention on the body that is being made by the medical profession. You are giving the patient an important right, which is a shield-like right. That contrasts with a request for assisted dying, which is a request. You are involving other people in an act that is an act of ending one’s life. That is not something that the medical profession has been comfortable with, going back thousands of years.

So you can discern a number of differences. Could you reduce those differences to one thing and one thing only, and be particularly precise about it? Probably not. I think you are talking about differences that cluster and group, and which we overall accept as a difference of kind.

The other issue here that is important is intention. When you are assessing somebody’s decision to refuse a life-sustaining treatment, the doctor there does not have the intention to end a person’s life. That would be a concerning intention were it there—and sometimes it is looked for, actually, if it is disputed. But of course, when a doctor is involved with a process where somebody is seeking assistance in the ending of their life, it is quite difficult to say that the doctor does not have an intention to end life.

One could go on with a discussion of the differences, but the similarity is that we are talking about life and death.

[Kim Leadbeater]

Q This has been an incredibly helpful panel, so thank you for all your expertise.

Let me come back to the content of the Bill, and to some of your points, Professor Owen. In terms of capacity and coercion, I think we are absolutely having these really important conversations. What concerns me a little bit, though, is whether we are saying we are not confident that two doctors, potentially a psychiatrist and an oncologist, and a judge can make assessments of capacity and coercion between them. What does that mean for things that are happening at the moment? We have talked about the withdrawal of end of life treatment and those things; those assessments must be being done now, all the time, but at the moment there is no legal framework around that. Surely, putting a legal framework around that and having all those multidisciplinary people involved has got to be a positive thing. Professor Hoyano, I would appreciate your thoughts on that.

Professor Hoyano: As I say, whereas I completely respect Professor Owen’s expertise in this as a psychiatrist, for me as a lawyer the question of capacity is a yes or no, necessarily. But capacity is always determined by the Court of Protection in respect of the decision that must be made by the person concerned: do they have the capacity to do it?

When we are talking about a determination of capacity, and also about coercion—which of course is part of capacity in a sense, because capacity is the autonomy of decision making—you are going to be having a very focused inquiry. It is not an inquiry into whether a person has capacity to manage their financial affairs. I probably do not have that capacity, but on something like this I would have capacity. It is important to recognise that it is a yes or no question, which the law has to draw and does draw, depending on the expertise of psychiatrists like Professor Owen, but also forming its own judgment from its own experience, which is why I think the Court of Protection really is the place where this should be.

There is one aspect of the Bill that worries me a lot, and that is the number of people who will be excluded by the provision that the medication must be self-administered. This would mean that Tony Nicklinson, who went all the way to the House of Lords to try to get the right to die, could not have it under this Bill, because he was paralysed. He was a tetraplegic, basically—he was paralysed from the neck down, with limited movement of his head, from a stroke. He lived for seven years with that condition and he would not have been able to self-administer. In fact, when he was denied by the House of Lords—anyone who has seen the Channel 4 programme will have watched him wail in despair—he refused all nutrition and hydration from that point until he died. That was the death he did not want, and I think we need to recognise that there are problems like that. In 2023 in Canada, across the entire country, only five patients opted to self-administer the medication—only five. Even when patients were capable of doing it, they wanted the doctor to do it instead, so let us remember that as well, please.

Dr Ward: Can I make a quick point about self-administration? This is something that in Scotland we looked into in great detail. In Scotland, we chose self-administration specifically because it does not just include ingestion or swallowing. There is a range of ways in which you can self-administer the medication, and I am happy to provide that information to the Committee if that would be helpful.

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[Lewis Atkinson]

Q Dr Richards, in the light of your research, could you say a little bit more about the weight that individuals dying place on the importance of autonomy and how that is weighed up against other considerations around safeguarding and so on?

Dr Richards: There are two things that I would like to say about this. The first is that it is individually specific, which probably will not come as a shock to you. The evidence shows that the people who request assisted dying are people who have a particular preference for control in their life, and they have had this preference across their life, so it is part of their identity. In that sense, it is a personal preference as opposed to a deficit in palliative care, which is what we hear a lot about.

The second thing is that, with regards to autonomy, proponents of assisted dying are very keen to emphasise that this is an autonomous decision, which it is, and would have to be by virtue of the law. However, that does not mean that families, loved ones and close social relations are not really embedded in that decision making. It is important to think of autonomy as relational rather than as an isolated making a decision not in relation to others. It is also important to think about the impacts on the family when you are thinking about the guidelines that would go along with any legislation.

[Danny Kruger]

Q This is a question for Claire Williams. It was interesting that you said you were not aware of what drugs might be used in assisted dying. We obviously do not yet know what will be proposed here if we pass this law. There are lots of different combinations of drugs used in other jurisdictions, and we do not know much about them. I think that is fair to say.

What we do know is that there is a combination. In two thirds of deaths in Belgium, I think, and in the United States, where I have visited, the first drug that is used is an anaesthetic, and then there is a paralysing agent. A paralytic drug is introduced, which often gives the impression that the patient is having a peaceful death, but we do not actually know what is going on beneath the surface. I am afraid to say that, from studies into people who have been on death row who have been legally executed, there is often evidence of brain trauma. Can you speak to this at all? We know that in a minority of cases real complications occur—it often takes a very long time for the patient to die, and there is vomiting and all sorts of distress. How can we improve what we know about the actual process of dying, and how can we reduce these terrible complications?

Claire Williams: I can only apologise, because I am here to give evidence about a model for collective decision making rather than about my experience with regard to these drugs. As you say, the potential side effects and prolonged deaths are something we will need to consider for these cases. We need to take evidence from other countries that have had this experiences. Apologies, but I cannot comment on this particular aspect.

[Kit Malthouse]

Q My question is to Dr Richards. Obviously health service medics are dealing with end-of-life situations at the moment—they are withdrawing treatment or declining to give treatment if they think it is futile. In those circumstances there are a set of safeguards. How do those safeguards compare with the safeguards in the Bill? From your research, do you think there is any adjustment required to the safeguards we have at the moment?

Dr Richards: Assisted dying is quite categorically different from the end-of-life scenarios you are talking about there, so you would expect a very different set of safeguards. It is a misunderstanding to think that assisted dying is of a piece with other life-ending decisions. It is really something quite different and requires a different framework.

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[The Chair]

Order. One question, one answer. I call Danny Kruger.

[Danny Kruger]

Q Professor Preston, I wonder what you think about this idea of a panel instead of the High Court judge. A lot of Members who voted for the Bill on Second Reading did so partly on the basis that there would be that judicial stage. Although we can all recognise the value of having more expertise involved, the role of the judge is essentially adversarial in principle, and the public would expect it to be. They would be hearing arguments and taking evidence. Do you think that the Bill would be safe without that? Secondly, do you not agree that, as we heard earlier from a law professor, the right of appeal should be in both directions? There should be the right of appeal against an approval as well as against a denial?

Professor Preston: I think we suggested a panel. I submitted some evidence after the last Select Committee inquiry about a panel that could operate outside. Lots of the reasons I gave were about helping to navigate, helping to identify doctors and helping to support people who feel vulnerable within the NHS.

What increasingly came out from the idea of a judge is the question of what exactly their role is and the fact that there is no right of appeal. However, if you had a panel, that would give a much more thorough understanding of what is happening. The additional safeguard is that the panel could say there needs to be a palliative care consultation. You would have to be sure the doctors who are doing it are, based on their register, qualified to have a palliative care conversation so that all options have been explored.

My fear is about if we do not specify what training is or what these people’s expertise is. Most doctors do not know too much about palliative care or what the options are. You do not need to see a palliative care doctor, as a palliative care nurse can talk you through it, but the additional power of that panel is that it could be answerable to the court or some other sort of assisted dying tribunal.

[Lewis Atkinson]

Q I have a question for Dr Richards. I note from your biography that you have done work studying the phenomenon of old age rational suicide. I noted your comments before about research suggesting that people who seek assisted death have got particular, strong preferences for control and agency at the end of life. We know there are around 650 people with terminal illnesses who take their own lives every year at the moment. I wonder, particularly given your work on old age suicide, what would be your assessment on how assisted dying becoming an option here in the UK might affect those statistics.

Dr Richards: The Bill covers terminal illness only. It includes people with six months left to live, so it would not include the phenomenon of old age rational suicide, which is where you want to end your own life for reasons of the accumulated losses of old age, or because you feel you have lived a completed life. This really relates to people who are in what is called the fourth age of life. It is a social and cultural phenomenon that there are people in the fourth age of life who want to wrap things up on their own terms, but this is a separate phenomenon to people who are in a natural dying phase of life and want to accelerate that. It is different.

After you legalise assisted dying for terminally ill people, you will still get older people taking their own life. The highest demographic for completed suicides is people over the age of 70. It is a phenomenon around the world, but it is a qualitatively different phenomenon to people in a natural dying phase. If we look at the data on who requests assisted dying, it is people who want control and agency, and they may even have thought about it as a mode of dying that they want to access before they even had a terminal illness. They might have always imagined that, but that is in conjunction with various forms of suffering that they will be experiencing. It is not just personal preference; they are also suffering, and suffering is very multi-faceted and multi-dimensional at end of life. It has various different components, not just physical.

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[Rachel Hopkins]

Q Thank you all for sharing your family stories today. It is really moving. Julie, I want to ask about your experience in Spain and how you found that particular process in comparison with what we have in the Bill. How did it work? What was positive or difficult for you?

Julie Thienpont: Guido had decided right from the word go, even before he got sick, that that was the way he would want to end his life, if there was a possibility of it. He was from Belgium originally, so he expressed a wish that if ever he needed it, he would like to go back there.

The law in Spain is very similar to the Bill, which I have read through countless times. There are a lot of similarities. There were very rigorous checks. It involved much paperwork, counselling and family liaison. The difference was that it went before a board, so it was a panel that would allow or not allow the decision—it was not decided in a court. That would be the main difference, but the process was rigorous. It was slightly difficult for me, because although I can speak Spanish, the terminology was frequently more difficult, so they very kindly translated for me. They explained everything: what would happen and how it would happen, if it happened. It was a big celebration for Guy when he was actually granted this. They also told us that he could change his mind after he had made the decision, should he wish to. He did once. It was me who asked him to do that, because I did not feel he was sick enough, which sounds a bit silly, I know.

He was an intensely private person. The palliative care in the part of Spain where we were is excellent, but it was quite irrelevant for him because he had already expressed that he wanted to die at home. We lived up a mountain; we were quite remote. Being such a private person, he never wanted to be in a situation where somebody else had to see him in any vulnerable situations, especially with personal hygiene and so on—even me, although I was able to help him in many ways. I had to do a lot of procedures for him, after being trained to do so, but he was more than happy with the situation of having assisted dying once it was granted. He did not need any other sort of care, although we still had a nurse coming every few days and the family doctor came up at least once a week. That does not sound much, but he did not want her any more often than that.

[Danny Kruger]

Q This is a question for Mr Malone. May I say how greatly I sympathise with what you have been through? I am very sorry to be fighting against you in this matter. I really can imagine how that feels. Thank you for what you said. I just want to ask about your sister’s experience. On the eligibility question, is it your belief that she would have qualified for an assisted death under the Bill, with the six-month terminal illness criterion? To follow up on that, do you think we should expand the scope to include people with motor neurone disease who might not fall within the six months?

Pat Malone: She would not qualify, because there was no telling how long she would live as a live brain in a dead body, as she said. It could have been months or even years, so she would not qualify in any case under this Bill. However, you have moved mountains to get to this point, so the last thing in the world I want to do is pile more requirements on the Bill. I would like to see some stuff stripped out of it, actually, to make it easier, but I am not going to ask for that because we desperately need to get away from the status quo. This Bill gets us away from the status quo.

[Naz Shah]

Q Thank you very much for coming today and sharing your stories. I have two questions. Julie, you said that you had family liaison and counselling. How long did that go on for? This Bill does not have that requirement, so do you think it is something that we should put in it?

Julie Thienpont: Maybe I said “counselling”, but it was not a session of counselling. It was somebody asking my opinion to check that I was 100% behind Guy. His son also did that by proxy—via us—because he was in a different part of Spain. They wanted to ensure that he had talked it over with family members. It was not hastened along, because he had been given a short life span, so it did not take terribly long. He had to wait about three weeks before the initial ball started rolling, and then two weeks later a family doctor and nurses from the hospital came round for form filling, reading through, translating and signatures, and again another two weeks after that. Each time, I believe it went before a panel. We did not, but the paperwork had to go before a panel. They were left in no uncertain terms that that was the way he wanted to end his life.

It was a very peaceful, serene and beautiful death, as opposed to what it would have been like. He was able to speak to his relatives in Australia, his brothers in Belgium and other family members, and I was able to hold his hand. Guy had always been a bit of an old cowboy, and he always said that he wanted to die with his boots on. I am proud to say that that is what he did. At the end, we were holding hands, and I said to him, “Don’t be afraid.” He said, “I’m not afraid,” and he winked at me just before he closed his eyes.

On the process, perhaps I should have said that it was intravenous, so he had a drip in each arm. It was quite a quick process—maybe 10 to 15 minutes, which I thought was quite quick—but we had had lots of time that morning, you know. It was a beautiful end—the wink especially. I am left with very good memories of such a peaceful death, which was going to happen regardless. He was at peace with it, so that helped me.

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[The Chair]

As we have time, I call Danny Kruger.

[Danny Kruger]

Q Following straight on from that, do you imagine it to be an NHS-funded service if it is outside core general practice? If so, what might the implications be for resourcing, assuming that it was funded out of general NHS resources? In the practical terms of the Bill, what do you think of the provision that the co-ordinating doctor must remain present with the person until they die, bearing in mind that that might take some hours? I am interested in your view on the implications for resourcing the service.

Dr Mulholland: Fortunately, that is not the RCGP’s bit, but I think we would be very much concerned. In our principles, we were clear that we thought that there should be no reduction in core services in general practice, nor should there be any reduction, if the Bill goes through, in funding to palliative care services, which we know are often struggling as well. This should therefore be additionally funded. Whether it occurs in the NHS is not our decision, but we would be very concerned about health inequalities creeping into any part of the health service. We are aware of the differential that occurs in lots of things—life expectancy has come out again in recent reports between different parts of the country and people who live with different levels of poverty. If the Bill comes through, we will want to make sure that there is not a differential in who is able to access it. Whether that says that it should be NHS or private I am not sure, but that needs to be considered as part of whatever comes out of this.

[Dr Opher]

Q I would like to go back to the point about depression, because it is common. In the general population, 20% are on antidepressants—on SSRIs. GPs diagnose the vast majority of depressions. Dr Mulholland, what are your thoughts on whether checking for demonstrable depression should be a standard part of the assessment before you refer people into the service? The idea of getting a psychiatrist who wanted assisted dying to see every case, given how difficult it is to see a psychiatrist in the NHS at present, would really limit the service.

Dr Mulholland: We see a lot of people with mood disorders of different types and of different severities. Many people with depression who are treated with antidepressants carry out full-functioning jobs and lives because of the treatment that they have and because their depression is not of that severity. If someone had very severe depression and we were accessing our psychiatric colleagues, that would be a different decision, and perhaps it is not something that would happen at that point. Most people with depression, anxiety and other mental health problems would have capacity, because we would presume it under the Mental Capacity Act, so it is not necessarily an obstruction to people being referred for anything.

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[Sarah Sackman]

Further to that point of order, Mrs Harris. I want to clarify the Government’s position. As the Committee knows, the Government are neutral on the Bill, but once the Committee has concluded its work and prior to Report, we are committed to publishing the ECHR memorandum, a delegated powers memorandum, the economic impact assessment that was committed to during the money resolution debate, and an assessment of the equalities impact of the Bill. In terms of the timing, it is necessary that the impacts that are assessed be of the Bill as it is brought forward. If the Bill is liable to change via amendments proposed by members of this Committee, it is important that we know what it is that we are assessing the impact of. That is why the proposed timing is to publish the impact assessment at that stage. The point is that before Members of the House come to a vote on Report and Third Reading, they will all have before them the impact assessment in respect of equalities and all those other aspects of the Bill.

[Danny Kruger]

On a point of order, Mrs Harris.

[The Chair]

I am going to proceed now. I thank the hon. Member for Bexleyheath and Crayford for notice of his point of order. I am sure that the Member in charge and the Government have heard his points. If he wishes to look at procedural options, he should consult the Clerks in the Public Bill Office.

That brings us to the end of today’s sitting. The Committee will meet at 9.25 am on Tuesday 11 February to begin line-by-line consideration.

Ordered, That further consideration be now adjourned. —(Bambos Charalambous.)