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

Debate between Danny Kruger and Kim Leadbeater

Committee stage
Thursday 30th January 2025 Public Bill Committees

[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.

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

Debate between Danny Kruger and Kim Leadbeater

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[Kim Leadbeater]

Q Thank you for coming to give evidence this morning—it is incredibly helpful. I am going to come back to clause 2 of the Bill, which concerns the definition of terminal illness. I am very clear on who the Bill is aimed at helping and who it is not aimed at involving. The definition says that the person has to have

“an inevitably progressive illness, disease or medical condition which cannot be reversed by treatment”.

It also says, for the avoidance of doubt, that this cannot be “a mental disorder” or “a disability”. I hear your concerns, and I want to support you and work with you on this. I am keen to know: what else do you want to see in the Bill that would reassure you that this is not about disabled people or people with mental disorders?

Dr Griffiths: I am conscious of time, so I will be very quick. My first point would be, why would you stick it at six months then? Why not have it at seven days, for example, as a way to take out our concerns? If you are talking about prognosis, let us go back to Chelsea’s point and the point that I made before. My condition is a neuromuscular condition. I have had meetings with clinicians where some have referred to it as a terminal illness, some have referred to it as a life-limiting condition, and others have referred to it as a progressive condition. The articulation of the ideas and the ways in which we think about conditions show the complexity of the issue. We are talking about terminal illness, and people who are terminally ill do constitute disabled people under the Equality Act, so you cannot make the distinction.

If you want to be quite proactive about it, then why not reduce the prognosis timeframe and make it as short as possible to take out the concerns about prognosis, and the concerns around whether individuals are going to live longer or could be facilitated access to alternative treatments to prolong life? I do not understand why we are fixated on a six-month prognosis because, as we have seen in other countries, as soon as you pass the legislation on six months, you will have individuals who say, “Why not seven months? Why not five months?” You will have campaigners who will say, “This does not include me and I have been campaigning for this.” There will be pressure to change and Governments will change. There is no guarantee that you can make that the eligibility criteria will be fixed.

[Danny Kruger]

Q I want to give Professor Shakespeare the chance to respond to the point that we have heard. I am interested in whether you recognise that many disabled people—in fact, not just disabled people, but anybody who declines treatment that keeps them alive—would qualify as terminally ill under the terms of the Bill? What protections we could give to prevent that?

Professor Shakespeare: First of all, a terminal illness is defined as a “condition which cannot be reversed by treatment” I know that that does not mean a cure; you are not aiming at a cure—but it says, “cannot be reversed”. Surely that would not include things like HIV and diabetes because they can be reversed. They cannot be cured; they are still there, but they can be reversed with insulin, antiretrovirals or whatever.

I think, yes, terminally ill people are disabled people almost always, but that does not mean that all disabled people are terminally ill. Even if you have a disease or a condition—like Miro does or like other people do—that will probably result in your death eventually, you are not going to die tomorrow or in six months. You may die in 16 years or whatever. It is very difficult to define terminal illness, and that is why six months, I think, is used in this Bill.

Very recently, my aunt died. She was unconscious for the last month or so of having cancer and then she finally died. She would not have been able to express her will and her preference to have assisted dying, even if she wanted it. Therefore, I think six months when you can have capacity, you can anticipate, you know you are going to die but you want to have control in the manner of your death, is more useful than seven days or less, when you might be unconscious and you might not be able to express a will or preference.

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

Debate between Danny Kruger and Kim Leadbeater

Committee stage
Tuesday 21st January 2025 Public Bill Committees

[Kim Leadbeater (Spen Valley) (Lab)]

I beg to move,

That the Committee do sit in private to consider matters relating to the sittings motion.

It is a pleasure to serve under your chairmanship, Sir Roger, and to be here for the first formal meeting of the Terminally Ill Adults (End of Life) Bill Committee. Ahead of the oral evidence sessions next week and the line-by-line scrutiny thereafter, we have two jobs to do this afternoon. One is to confirm the sitting times for the Committee and the other is to confirm the witnesses for oral evidence. Following discussions, I have taken the decision to have some of our sitting today in private. That is normal procedure for discussing witnesses and I think it is the right way to proceed, given that some of those discussions will probably involve conversations about the suitability of witnesses who are not here to speak for themselves. It would be inappropriate to discuss named individuals in such a way. Transparency is of course very important, but so is respecting individuals’ privacy. I hope that is clear to colleagues and to others.

I appreciate that members of the Committee and those viewing our proceedings may wish to know about the purpose and effect of this motion. Most Public Bill Committees are subject to programming, and the Programming Sub-Committee would discuss in private which witnesses to hear from. Similarly, Select Committees discuss in private which witnesses they will hear evidence from. Out of respect for the named individuals that we may call to hear evidence from, I propose that we discuss them informally in private. Once that informal discussion has concluded, the Committee will move back into a public session to formally consider the sittings motion. Any Member who wished to speak about the motion publicly or move an amendment would then be able to do so.

[Danny Kruger (East Wiltshire) (Con)]

It is a pleasure to serve under your chairmanship, Sir Roger. I look forward very much to the process of this Committee and to working with hon. Members to do what we can to ensure that a good Bill is presented back to the House.

I very much respect the points made by the hon. Member for Spen Valley. Nevertheless, I do have some real objections to the motion, which I encourage Members to oppose. The fact is that this debate was due to be held in public—in fact, people have travelled here in the expectation that they would be able to attend and observe our debate on the sittings motion—but last night, for reasons we do not fully understand, a decision was clearly made to table a motion that we sit in private. I would be grateful to understand why that decision was made so late.

My general point is that there is a clear public interest case. The public should understand why witnesses have been chosen and why other people have not, and if there are concerns about the witnesses, they should be aired publicly. This is the only time that the public are being consulted—that experts from outside Parliament have a chance to contribute to our deliberations. I fail to understand why those discussions cannot be held in public. The only argument that I can imagine—and the hon. Member for Spen Valley made it—is that Members might for some reason be uncivil or speak disrespectfully about potential witnesses, which I do not for a moment believe. I am sure that you, Sir Roger, or the other Chairs will keep us in order throughout our proceedings.

We are here to talk about the overall balance and particular qualifications of the witness list. Looking at the witness list that was presented this morning by the hon. Lady, I have very serious concerns, which should be aired publicly, about the list. It includes eight witnesses from foreign jurisdictions, who are being called to give evidence from abroad; all are supporters of assisted dying in their jurisdictions. There are no people speaking against the operations of assisted dying laws internationally. There are nine lawyers on the list—all of them, with the exception of three who appear to be neutral, in favour of a change in the law. There is not a single lawyer against this Bill. Sir James Munby was suggested, but I understand he has been removed. There might be a perfectly good reason for that, but he has spoken against the Bill.

There is nobody on the list from deaf or disabled people’s organisations, but the UN convention on the rights of persons with disabilities recognises the importance of engaging with such organisations in laws of this nature. With the exception of Dr Jamilla Hussain, there is no one on the witness list who can speak to the equality impacts of assisted dying.

--- Later in debate ---

[Danny Kruger]

I look forward to the opportunity to discuss the sittings motion, which I hope we can do publicly. On a general point about process, the Bill was written by a campaign group.

[Kim Leadbeater]

That is not true.

[Danny Kruger]

Well, it had a significant input.

[Kim Leadbeater]

On a point of order, Sir Roger. That is categorically not true. The Bill was written with senior legislative expertise, along with myself as a sitting Member of Parliament and with esteemed colleagues. I take that point of offence quite personally.

[Danny Kruger]

Well, I hope that the hon. Member—

[Danny Kruger]

I apologise, Sir Roger, and I apologise to the hon. Lady for causing offence. I hope she will not be offended when points are made that she disagrees with.

[Kim Leadbeater]

It is a matter of fact.

[Danny Kruger]

I am happy to withdraw the suggestion that the Bill was written by a campaign group, on the basis of the hon. Lady’s assurance that it was written by herself. I hope it is not the case that there was significant input from campaigners. I do not see why there should not have been; I just mention it because the Bill came to us with no formal consultation. There was no impact assessment—

[Kim Leadbeater]

On a point of order, Sir Roger. Surely we are having a conversation about whether we sit in private or not. Can we keep to that matter?

[The Chair]

Forgive me: I am in the Chair and I will decide—but the hon. Lady is absolutely correct. Once again, I am afraid that the hon. Member for East Wiltshire is straying very wide of the motion on the amendment paper. I would be grateful if he would now come to his conclusion so we can start to move forward.

[Danny Kruger]

I absolutely will. In fact, I will finish there. The points I have been trying to make are simply in the light of the fact that if the hon. Lady’s motion is accepted, the public will no longer have the opportunity to hear any of our points on the sittings motion—on the process that we will be decide on.

[Kim Leadbeater]

On a point of order, Sir Roger. That, again, is factually incorrect. We have already said that there will be a private sitting for conversations about individual witnesses, including some that the hon. Gentleman has already started talking about, and then we will open again to the public so that everybody can hear the Committee’s conversations.

--- Later in debate ---

[Danny Kruger]

All the names that the hon. Member for Bradford West has suggested were indeed submitted, I believe, to the hon. Member for Spen Valley ahead of the deadline that she put to us at the end of last month.

[Kim Leadbeater]

On a point of order, Sir Roger. All those names were not submitted.

[Danny Kruger]

The hon. Lady can feel free to intervene on me without troubling the Chair. I stand corrected if that is the case. We only received the final list this morning. It was necessary to make alternative suggestions ahead of that, which was done. I am now supporting the hon. Member for Bradford West in making suggestions for slight adjustments, as she suggests is all that is appropriate at this point. The list is unbalanced. I had to do a very quick analysis, and of the almost 60 names that have been put to us, 38 of them are in favour of the Bill and the principle of assisted dying, whereas there are only 20 who are opposed. There is an inherent imbalance there. It is only a quick analysis that has been done, and we will be able to do more of that subsequent to this sitting, but that is my impression.