Terminally Ill Adults (End of Life) Bill (Twenty-fifth sitting)

Debate between Lewis Atkinson and Kim Leadbeater

Committee stage
Tuesday 18th March 2025 Public Bill Committees

[Lewis Atkinson]

I think the Bill is very clear on the legal parameters. A doctor may not act, in terms of administering the substance, in a way to hasten death. Within that, we are back into the realms of normal medical practice, as my hon. Friend the Member for Stroud set out. I am sure that there will be legal guidance, whether that be from the GMC or elsewhere, if and when the Bill were to pass. The Secretary of State would have the powers anyway under clause 30, but for the avoidance of doubt, amendment 430 strikes the right balance in giving backstop permissions to the Secretary of State to clarify anything if needed.

[Kim Leadbeater]

On the hon. Member for Richmond Park’s point, which a couple of people have made, I do not think anyone is saying that this is not a new situation—of course it is, as we are all aware. My hon. Friend the Member for Stroud’s point was that a doctor being with a patient who is dying is not a new situation. That is the important distinction.

--- Later in debate ---

[Kim Leadbeater]

I can help my hon. Friend out on this point. There is an expectation in the jurisdictions where assisted dying happens that it happens in different locations, very much centred around the patient’s wishes, which is the approach we should take.

[Lewis Atkinson]

That is exactly right. That will quite possibly include people’s individual homes as well as not in their homes, in places of appropriate care and peace and tranquillity.

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

Debate between Lewis Atkinson and Kim Leadbeater

Committee stage
Tuesday 4th March 2025 Public Bill Committees

[Kim Leadbeater]

Well, that is the purpose of clause 4: the doctor has to lay out the options available to the patient as long as all the criteria are met.

We can see from the guidance that currently exists that doctors take a very sensitive and patient-centred approach to end-of-life conversations. If the law were to change, that approach would continue with additional training specifically related to assisted dying, as has been discussed. It would also mean that the issues that doctors currently face around discussing assisted dying would be addressed.

As the BMA says, at the moment

“The law does not provide a clear definition of which actions might constitute assisting or encouraging suicide…What if a patient wishes to travel abroad for assisted dying? While the act of travelling abroad for assisted dying is not illegal, assisting, facilitating, or encouraging someone to do so is a criminal offence…doctors need to be aware of the possibility of legal and professional sanctions if they were to do so.”

I imagine that that must create a real sense of jeopardy for doctors. Similarly, the GMC recognises that doctors will face challenges in

“ensuring that patients do not feel abandoned”,

while ensuring that the advice or information that they provide does not encourage or assist a person to end their own life.

These are very difficult conversations for patients and doctors, but by legalising assisted dying in this country we can give clear guidance through a robust legal framework, and create the thorough, transparent process that is currently lacking. These conversations provide a safeguard while the person is still alive. As the former director of public prosecutions, Sir Max Hill, told the Committee,

“In each of the 27 cases I considered, the deceased individual was already dead, and that is when the scrutiny started. The major advantage of the Bill, if I can put it that way, is that that will be reversed, and scrutiny will be before death.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 86, Q111.]

Mark Swindells from the General Medical Council told us:

“We do get inquiries from doctors who are concerned that they are doing the right thing when it might become apparent to them that a patient wants to travel overseas to access assisted dying.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 46, Q36.]

Bringing those conversations out into the open has to be better for the patient and the practitioner.

[Lewis Atkinson (Sunderland Central) (Lab)]

With reference to amendment 8, and further to the intervention from the hon. Member for East Wiltshire, can my hon. Friend reflect on the provisions as set out in clause 4(1) and (2), which say that the issue relates to doctors’ professional judgment and that doctors are under no obligation to raise those issues in any situation?

[Kim Leadbeater]

Absolutely. This is about professional judgment, which is what the BMA is really clear about. Doctors have to be able to use their professional judgment. They are not under any obligation to raise the issue, but they are not under any obligation not to raise it. The BMA is really clear about that. I thank my hon. Friend for his intervention.

I welcome amendments 319 and 320 from my hon. Friend the Member for Bexleyheath and Crayford and I thank him once again for his positive engagement with the Bill. He raises a very valid point about the initial discussion. While the Bill is very clear that it applies only to terminally ill adults over the age of 18, in that someone would have to be over 18 to make the first declaration, it is not clear that the initial discussion could also not happen with someone under the age of 18.

We should not prohibit open conversations with terminally ill young people and their families, as they create openness, transparency and safeguards and provide much-needed support at what most of us can only imagine must be the most difficult time of anyone’s life. However, I think it should be made clear that the actual assisted dying process cannot be embarked upon unless someone is over the age of 18. I have taken advice about how best to incorporate that into the Bill from a drafting perspective. As a result, I have tabled amendment 418, which applies to clause 5, and states that regulations must provide that the first declaration contain, among other things,

“a declaration that they have had a preliminary discussion with a registered medical practitioner, that they were aged 18 or over when they had that discussion, and that they understand the information referred to in section 4(4)(a) to (c) that was provided during that discussion”.

As such, the aim of amendments 319 and 320 is achieved. I hope that that is to the satisfaction of my hon. Friend the Member for Bexleyheath and Crayford.

With regard to amendment 339, I have listened very carefully to the concerns of my hon. Friend the Member for Bexleyheath and Crayford, who tabled it, and the evidence from Mencap chief executive Dan Scorer, who suggested that for terminally ill people with learning disabilities

“that initial conversation has to be incredibly well supported and structured…the person should have accessible information in advance of that discussion so that they are fully informed about all their rights in terms of treatment options at end of life”. ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 280.]

I absolutely agree with the intention of the amendment. I am seeking advice on the legal and technical implications, as I believe there is some tightening up that would need to be done around some of the phrasing, such as the concept of “sufficient time” or what would constitute a “supporter”. I therefore cannot support the amendment as it stands, but I am very happy to look at ways to take this forward and to meet my hon. Friend to discuss the amendment, which, quite rightly, gives special consideration to people with autism and learning disabilities. I know that my hon. Friend the Member for Penistone and Stocksbridge is also considering tabling amendments that would have a similar effect; perhaps we could all meet together.

I also reassure my hon. Friend the Member for Bexleyheath and Crayford that I am considering the involvement of people with learning disabilities, and groups representing them, in the development of guidance and training on assisted dying and end-of-life conversations. As Dan Scorer said,

“people with a learning disability should be involved in the development of that guidance” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 281.]

I absolutely agree.

Amendment 368, tabled by the right hon. Member for East Hampshire, has been discussed this morning. I sought advice about it as it was new to me. I believe that no statutory guidance has yet been published under the Down Syndrome Act, so we lack detail. That Act resulted from another private Member’s Bill; I am sure we can all agree what an excellent process this is for making important changes to the law. As the Minister said, the amendment is likely to be unworkable for doctors so I cannot support it. I would, however, be very happy to discuss the thoughts of the right hon. Member for East Hampshire and look at how we can meet his objectives—possibly through an addition to new clause 8, which is about the duty to consult and the Secretary of State consulting with the Equality and Human Rights Commission. At that point, the specific needs of not just people with disabilities but those with other protected characteristics will be represented. Alternatively, we could look at the codes of practice in clause 30.

I am happy to take those discussions forward and may even be able to speak to the right hon. Member for East Hampshire at the drop-in session he is doing this week with the National Down Syndrome Policy Group, ahead of Down’s Syndrome Awareness Week.

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

Debate between Lewis Atkinson and Kim Leadbeater

Committee stage
Thursday 30th January 2025 Public Bill Committees

[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.

[Lewis Atkinson]

Q Professor Owen, can I probe a little more something that you raised before—the interaction of potential impairment, potential family dynamics and so on in a way that is not malign, but that you think is a consideration? We have heard some evidence in the course of this week about whether there would be any benefit from a more multidisciplinary approach that could make a more rounded, psychosocial assessment of someone’s situation. That would be less about the clear test of whether there is capacity under the Mental Capacity Act and more about the wider considerations of those interactions. I just wonder whether the inclusion of, say, social workers or mental health professionals as part of a multidisciplinary approach would give you any reassurance on those points that you made.

Professor Owen: Good question. On the point about that interaction issue, it is not just me picking it up; it is the courts and the Court of Protection particularly. If you are interested, it is footnote (11) in the written submission from the Complex Life and Death Decisions group. The point that you make is well taken from my point of view. You have two doctors, essentially, doing the assessment. Some doctors can be very good at assessing social circumstances; some are not so good. I think it would be preferable to try to get a law that gets sight of social circumstances; one way of doing that may be to insert a requirement that a suitably experienced social worker is involved, so that there is some sensitivity to those contextual, relational, interpersonal effects, which, as I know you are aware, can be very subtle. A lot of these things are extremely difficult to pick up. They are easy to miss and, even when you are aware of them, there can be dilemmas about what to do with them.

Professor Hoyano: Might I add a postscript to that? A model that we could consider in this context is CAFCASS—the Children and Family Court Advisory and Support Service—in the family courts. It is a body of experts—civil servants, in effect—but they are independent and they are accustomed to dealing with specific context with social workers, for example. They investigate what should happen to a child in public law or private law proceedings. It occurs to me that something like that—a report from an equivalent body to the solicitor’s office, which I mentioned before—could be a very good way of building that in, because I completely agree that social workers are likely to be more professionally attuned, by virtue of their training and experience, to looking at the wider context.