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

Danny Kruger Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Dr Simon Opher (Stroud) (Lab)]

Q Thank you for all giving up your time, with your very high level of palliative care expertise and experience. I am a practising GP, and GPs and district nurses do a lot of palliative care with a lot of advice from you people. I have also noticed that, even with the absolute best quality palliative care, some people have still talked to me about an assisted death, or shortening their death. I would like to hear your comments. Is this more about autonomy than symptom control?

Dr Clarke: I absolutely agree that in a small number of cases, palliative care at the highest level cannot eradicate all suffering, and cannot prevent a person from wishing to end their life and have assistance in ending their life. That is absolutely the case; I would say that it happens surprisingly uncommonly, in my experience, but it does happen.

Autonomy is the crux of the issue for me, because autonomy is predicated on having meaningful choices. Can you actually choose option a or option b? Let us say that option a is high-quality not just palliative care, but medical care in general—district nursing care or social care, for example. If that is not available to you, you are potentially being pushed towards “choosing” option b—the route of assisted dying—not freely and not autonomously, but because option a has been denied to you by real-world failures. We all know about those real-world conditions—we are all familiar with the latest winter crisis, where patients have been dying on trolleys in corridors, etc—that are preventing the actual option of a death in which dignity, comfort and even moments of joy can be maintained right up until the end of life, when that patient is getting the high-quality palliative NHS and social care that they need.

That is the crux of the issue. If you do not have that as a real option for patients, we can say that they are choosing autonomously assisted dying, but actually society is coercing them into that so-called choice because it is not funding the care that makes them feel as though life is worth living. That is why I think many of my colleagues are so concerned about legal change now. It is not because of an opposition to assisted dying in principle. It is because the real-world conditions of the NHS today are such that people’s suffering means that occasionally they will beg me to end their life, and I know that that begging comes not from the cancer, for example, per se, but because they have been at home not getting any adequate pain relief. Once you start to provide proper palliative care, very often that changes.

[Danny Kruger (East Wiltshire) (Con)]

Q I will ask you one quick question, Dr Cox. Dr Clarke said that the capacity assessment was poorly conducted. Do you think that the threshold is appropriate, using the Mental Capacity Act 2005? Assuming that we could conduct these assessments adequately, do you think that the threshold is safe?

Dr Cox: I and my colleagues have concerns about the safeguards in the Bill. It is not just the capacity assessment; we also acknowledge that prognosis is incredibly difficult to assess accurately. I would say that you cannot always identify coercion. You can identify it when it is very obvious and extreme, but when it is very subtle, we cannot always identify it. After the event, there is nobody to tell us about coercion, so it is very difficult to monitor.

The other thing that concerns me is that we are putting all these assessments on the shoulders of two doctors individually, followed up by a High Court judge. In any other clinical practice, when we are making very serious decisions, we know that shared decisions are much better quality, much more robust and much safer. In clinical practice, we make all these decisions in multi-professional teams. I would never make these decisions independently of my team, because the perspective they bring can help me to understand things that I am not seeing.

The thing that I am really concerned about is how it is possible for these doctors, even with training, to have a good understanding of all illnesses in order that they can identify prognosis—neurological, cancer and every other. How is it possible for them to really understand capacity when capacity is not an absolute; it does change and it is very complex to assess? How is it possible for them to see all cases of coercion, which can be invisible?

In addition to that, are those doctors going to be looking out for opportunities to refer to palliative care when they see somebody who has suffering that could be addressed and may change their mind? Are they looking out for untreated depression? We know that treatment of depression can result in people changing their minds about wanting to die. It is a lot to ask these individual doctors to do, and that really concerns me.

[Kit Malthouse (North West Hampshire) (Con)]

Q I want to pursue that point a little with you, Dr Cox. My understanding is that your profession is already taking these decisions, or supporting patients to take these decisions—for example, the withdrawal of ventilation for an MND patient towards the end, or if I decide to decline treatment or food and water to end my life as quickly as I can. Presumably, you already have guidelines or training about assessing coercion and capacity in those circumstances. I think in some—for example, advance directives—you are legally obliged to comply with a patient’s wishes. Are those guidelines and safeguards broadly translatable across into what, from my point of view, is another choice that a patient may make to end their life?

Dr Cox: There are two differences that I would identify. The examples you give are of somebody who may be naturally dying and is being kept alive, so the difference is that you are withdrawing a treatment; you are not intentionally killing them. This is the first difference with assisted dying.

The second difference, I would say, is that you are absolutely right that we do make those decisions with patients—with their families, if they wish—but in a multi-professional team. I would almost never make those decisions as an individual doctor without the support of my colleagues, for several reasons. First, as I have said already, that makes for much better decisions—they are safer and more robust. Secondly, the moral distress associated with these decisions is much less if you share them. That is also a worry for me—what happens to the moral distress of the co-ordinating doctor and the other assessing doctor? They are carrying a lot of moral distress. My understanding is that a very small percentage of doctors will want to engage with this—maybe 1% or 2% of all doctors will want to be in those assessing positions. They are carrying a lot of that distress because they will be doing a lot of assessing.

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[The Chair]

Order. I said earlier that this is not a dialogue. Address your comments to the Chair, and I will decide who speaks and when. I do not wish to be rude, but everybody’s got to have their fair share.

Sir Nicholas Mostyn: I do not know if you have seen Sir Stephen Sedley’s memo, which came today. He has suggested that the Official Solicitor should be the checker of these facts, which seems a sensible idea. The Official Solicitor would be able to recruit more staff to do this. It would not be nearly as expensive as High Court judges, and it would be an efficient way of dealing with the problem. The advantage of the Spanish system is that you have a qualified doctor as well as a lawyer doing the checking. Remember—a High Court judge is not going to be a qualified doctor. That is a significant advantage in my opinion.

[Danny Kruger]

Q I have a quick question for each of you. Sir Max, as you point out, the Bill does not repeal the ban on assisted suicide. It would still be illegal to assist someone to go to Switzerland. Alex Goodman KC, giving an opinion on behalf of Dignity in Dying, the campaign group that champions the Bill, thinks it is more likely that there would be prosecutions for people who assist their relatives to go to Switzerland once this Bill is passed. Do you share that view?

Sir Max Hill: I am not sure about that. I would always default to the code for Crown prosecutors and the two tests that the prosecution must go through, regardless of the crime that is being investigated. The evidential stage test sets out what it is necessary to be able to prove—some people say to a reasonable level—to afford a reasonable prospect of conviction. One can well imagine that, in Dignitas cases, that hurdle or test is often satisfied. It was often satisfied in the cases that I considered, and could often be satisfied in the future, but the evidential stage test being satisfied does not always mean that a prosecution results. That is because prosecutors must then go to the public interest stage and consider the non-exhaustive list of factors that are set out in the public interest stage test together with other policy, which, in this area of law, has developed since the legal case of Purdy in 2009.

In common with many other forms of crime, there are some legal policy considerations that a prosecutor is entitled to consider. They start at the very obvious—for example, what is the age of the suspect? Here, one is not thinking about the deceased who has gone to Dignitas. What is the age of the suspect? What are their characteristics? Have they ever committed a criminal offence before? What is their proximity to the case? What motivation did they have, emotional or otherwise, to lend assistance that technically means they have committed the offence?

I am going through that because, as I said, a proportion of the cases I considered were Dignitas cases, and it was often at the public interest stage that I determined that a public prosecution was not necessary. That is because, after full investigation, it transpired that the surviving relative had acted wholly out of compassion and, may I say, love for the deceased and was not seeking any gain for themselves—far from there being any dishonesty before or after the fact. That would still remain the case. It does not follow that, were this Bill to pass and were people then to take elderly relatives to Dignitas, they would necessarily face prosecution, but the premise of your question is “Could they?” and the answer to that is yes.

[Danny Kruger]

Q Sir Nicholas, do you want to comment? I have another question for you as well, but is it the case that prosecutions will be more likely? Maybe you disagree.

Sir Nicholas Mostyn: I do not agree.

[Danny Kruger]

Q You do not agree. In that case, this Bill would be worse for somebody with your condition because it does not address your condition and it would put your relatives at greater risk if they did assist you—but you do not think there is a danger of prosecution.

Sir Nicholas Mostyn: I think it is unlikely. I am sorry for interrupting you. I always used to say, “Don’t interrupt”, so I am sorry about that.

I fear that I will be one of the people, referred to by the lady who asked the first question, who has to go to Dignitas—frankly, I could afford to do that—because the Bill is not ever going to provide an assisted death for me. I will not be graphic about what the advanced stages of Parkinson’s are like, but the medical Members among you will be able to describe what is likely—not definitely; I do not want to say definitely—to await me. I am choosing my words carefully. It is either going to be a poor death here or to go somewhere like Dignitas. If my children took me as far as Calais, and then helped me after Calais—assistance only applies to within the jurisdiction—and drove me on to Zurich, I would be extremely surprised if any prosecution ensued.

[Danny Kruger]

Q I wanted to follow up further, but because time is tight I will jump to Mr Ruck Keene. Can you explain a little bit about your concerns about the Mental Capacity Act and its interaction with the Bill? Do you think the threshold of capacity, as set out, is adequate?

Alex Ruck Keene: I think there are two different questions. First, is any idea of capacity sufficient at all? I think that is an existential question that I am just going to park. Turning to the Mental Capacity Act itself, it is important to understand that there are three different bits of that Act in play. We have a set of principles: the presumption of capacity; the presumption that you have to provide all practicable support before you find someone to lack capacity; and the idea that you cannot, just because a decision seems unwise, say that someone lacks capacity. Then we have a functional aspect—in other words, can you understand, can you retain, can you use and weigh the relevant information, and can you communicate that decision? We also have what some people call the diagnostic element—in other words, is there an impairment or disturbance in the functioning of the mind or brain?

These are the three separate things, all of which we make work—more or less—in everyday practice. I say “more or less”, because yesterday I was on the advisory group for a project funded by the National Institute for Health and Care Research, which was funded in 2022 to try and increase the quality of mental capacity assessments in healthcare settings. We need to be under no illusions about how well we are doing it at the moment, but we make it work, more or less.

The Mental Capacity Act works more or less in the healthcare context, because every time we reach the view that someone cannot make a decision, we have an alternative—we can think about best interests. What we are asking the idea of mental capacity to do here is different, because there is no suggestion that, if you cannot support someone to make a decision, you will ever make a best interest decision in their name to assist death. It is also not obvious that the idea of a presumption of capacity should apply. If I doubt that you have capacity to make the decision to take your own life, or end your life, but I cannot prove it, is it logical or are we required to proceed on the basis that you do? Also, it is not immediately obvious that it is right that the diagnostic test applies in this context. In other words, I think you cannot understand the information, but I cannot prove the reason that you cannot understand it is that you have an impairment or disturbance. That is where my concern came in when I was explaining it in my written evidence.

I want to be absolutely and totally crystal clear: as far as I am concerned, at this stage, this is policy development. I am so glad that evidence is being taken and the public is thinking about this, but a Bill of this nature needs to be drafted by the Office of the Parliamentary Counsel. I am really trying to get across the policy line, which to me is about what doctors need to be interrogating—or anyone else, as I would love it if other people were involved—is, can the person understand the information? Can they retain it? Can they use and weigh it? Can they communicate their decision? If they cannot, we do not need to start mucking around with, “Why not?” It is just that they cannot, and that is the central idea of capacity. It is the functional idea, but it is tooled for use in the Bill rather than, as it stands at the moment, just being cross-referred out to the Mental Capacity Act, raising a whole series of additional complexities.

My only other observation is that I spend an awful lot of my life trying to improve Mental Capacity Act practice more broadly. I would be massively concerned were a knock-on effect of the Bill’s seeking to deal with a very specific group of people to be that it starts inadvertently—it would be inadvertent—interfering with how we think about healthcare decision making more broadly in the context of those people with impaired decision-making capacity. It is an insulation point, a making sure you have the right tools for the job point, and a not having a knock-on effect on thinking about things more broadly point. Sorry for the long answer.

[The Chair]

I will move on to Sojan Joseph, but perhaps you can pick this up. We have eight people wanting to ask questions and half an hour, tops.

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[Stephen Kinnock]

Dr Spielvogel, I do not know whether you have anything new to add to that. If not, that is fine.

Dr Spielvogel: Without repeating anything that Dr Kaan said, I was just going to say that in addition to my assisted dying hat, I am also the programme director for the family medicine residency programme, so my main job is actually training young physicians who are becoming what you would call GPs.

We have instituted curricula as part of our residency programme here to train interested physicians in learning how to do assisted dying. We go through a whole process for that, including lectures, them shadowing me and me shadowing them, listening in on their conversations, giving them pointers and walking them through the steps of the process. They then do this with multiple patients through the course of their residency, so when they graduate, they feel confident in being able to offer this care. As with most medical training, this should be included in that part of the training process. All the other things, such as pathways in continuing medical education, are very important for physicians out there in practice who want to start doing this, but really getting this into medical training at its roots is vital for normalising the practice.

Speaking of which, something else I have heard a lot is that this might be distressing to physicians, or that physicians would not want to offer this care. I would like to say that 80% of our residents on our programme opt to receive this training. When we did a study on this of graduates from our programme who were continuing to offer assisted dying, 70% of the surveyed residents said that their assisted dying work was more rewarding to them than the rest of their primary care work—70% said that it was more rewarding.

I want to come back to the notion that physicians would feel burdened or that this would be some sort of psychological negative to physicians practising it, because it is actually quite rewarding work. It has led me to be a better physician to all my patients because it has helped me with having these difficult end-of-life conversations with them. That was a bit of a twofer, sorry—I added that on there.

[Danny Kruger]

Q I have four very quick questions. I would be grateful if you could try to answer them quickly, because we have to let everybody else in before the end of the session. Dr Spielvogel, I was struck by you saying that nine out of 10 patients to whom you have suggested this option were not aware of it. How many people who did not know about it before and to whom you might have suggested assisted dying as an option do you think have taken it up? How many people do you think benefited from you telling them about the option?

Dr Spielvogel: A lot. I have actually been quite surprised. Everybody is different. This is the whole point: different people have different goals, objectives and values. I have mentioned it to people who say, “No, I would never do that,” and I never bring it up to them again.

[Danny Kruger]

Sorry, but how many do you think?

[The Chair]

Order. Do not interrupt the witness, please. Let him finish. You can then come back in with a question.

[Danny Kruger]

I apologise.

Dr Spielvogel: No problem. To answer your question more directly, I have had several people over the past couple of years who had no idea that it was an option and said, “That’s what I want to do.” They then went through the process with me.

[Danny Kruger]

Q Thank you very much. I was also concerned by what you said about what you called family coercion, which is people trying to stop their relatives taking this option. Do you think we can do anything to prevent that happening?

Dr Spielvogel: Yes. I think it could be made into a misdemeanour, a felony or whatever the equivalent is over there—sorry, I do not have the terminology. You could make it illegal to interfere with a patient’s right to make this choice. We stopped short of that in our most recent addendum to our law here, but I think that was a lost opportunity.

[Danny Kruger]

Q I will just jump straight to my final question. Dr Kaan, you said that you felt that people who felt they might be a burden were exercising their autonomy, and it was a perfectly appropriate reason to seek an assisted death. Is that right, and do you think there is anything more we should do to make it easier for people to access this right? Do you think they should be asserting anything other than their wish to do so?

Dr Kaan: You characterised it correctly in that I think that for people who have capacity, and who are making the decision to have this as an option, a part of their reasoning is that they want to save their family from an onerous caregiving experience. I think that is their right and it is part of their value system.

Of course, if that is the only reason, we are going to be exploring that. As Dr Spielvogel has said, that is a red flag. We are going to be exploring that, and exploring whether acceptable alternatives exist and what are the resources that the person may not be aware of. That is always part of the discussion. These discussions are always broad and multifactorial. But I think it is appropriate and okay for somebody to say, “I do not want my family to experience what I myself had to experience when I was caregiving for my elderly parents with dementia.” I have heard that many, many times. I do think people who have capacity should have their autonomy respected, in terms of the values that are driving them to make this decision.

We always want to work towards improving the social support for caregiving that exists in our society. There is certainly a lack of it here in the US, and probably there in the UK as well. Hand in hand with allowing people to make an informed decision about the option of having an assisted death, you should also be a strong advocate for social support and caregiving services at the end of life, because those really are important and needed.

[Naz Shah]

Q Dr Spielvogel, there is a Bill in California, SB 1196, which was introduced on 24 February 2024. It proposes, first, to remove the six-month terminal illness prognosis and allow requests from those with a “grievous and irremediable” disease causing unbearable suffering; secondly, to allow dementia patients to request assisted suicide if two doctors deem them to have capacity; thirdly, to allow self-administration of lethal drugs via intravenous injection; and, fourthly, to eliminate the sunset clause in the current law. Do you know what the status of that Bill is? Is it still live? It suggests a significant broadening of the law, which would have similarities to that in Canada, and it would seem to reinforce the slippery slope argument.

Dr Spielvogel: That is a good question. I do not know the specific status of the Bill, but I would assume that it has itself undergone an assisted death at this point. That Bill is not really being supported by any of our advocacy groups or, by and large, the physicians who perform assisted dying, because it is, as you mentioned, very broad and not aligned with how we feel standard practice is going and where we would want it to go. That Bill did not receive support from many of us.

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[The Chair]

Order. I am sorry; I hope this does not sound rude, Dr Kaan —regrettably, there are procedures in Parliament that require me to do this—but we have come to the end of the allotted time for the Committee to ask questions. I thank the witnesses Dr Spielvogel and Dr Kaan for your contributions and time. This was very valuable.

Thank you to our witnesses and for all the contributions, and for your forbearance on this very sensitive subject.

[Danny Kruger]

On a point of order, Mr Dowd. I wonder, given the fact that we have had so many really helpful conversations and questions but not enough time for everybody to ask everything they wanted, whether it would be appropriate for Members who want to write to witnesses to ask for follow-up information or further questions could do so through the Committee, rather than us all deluging the witnesses with our own messages, some of which will duplicate each other. I appreciate that there is a capacity question for the Clerks, but it might be appropriate to ask the Speaker for a bit more resource to enable that to happen. I think that the hon. Member for Spen Valley broadly supports the idea; I do not know if others do, as well.

[The Chair]

Let us be clear. Witnesses can submit written evidence until the Committee reports to the House. It is open to Members to individually write to witnesses and invite them to give written evidence, if they so wish. My advice to the hon. Member is that if he wishes to look at this in a more formal way or through a more formal mechanism, he is to speak to the Committee Clerks, because it is beyond my remit.

We now come to motions (a) to (d) amending the sittings motion tabled by the Member in charge. I have selected the amendment tabled to motion (a) and will group all four motions and the amendment for debate. I will first call Kim Leadbeater to move motion (a), then Naz Shah to move the amendment. The scope of the debate is all four motions and the amendment.