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

Kim Leadbeater Excerpts

Committee stage
Tuesday 4th March 2025 Public Bill Committees

[Stephen Kinnock]

The challenge is the dissonance in how the guidance under the Down Syndrome Act, which is currently very close to publication, is directed towards authorities such as trusts, but there is no coverage around individual doctors. At this stage, without seeing a clear distinction between the two or how it would work for individual doctors, the Department’s concern is that it could create confusion as to the obligations on individual medical practitioners under the 2022 Act. I am obviously open to conversations about how to clear that up, but the lacuna between the authorities and the individual doctors is the problem being flagged by the Department.

[Kim Leadbeater (Spen Valley) (Lab)]

I take the Minister’s comments on board. Will he agree to a conversation with me and with the right hon. Member for East Hampshire (Damian Hinds), who tabled amendment 368, to take the discussion forward?

[Stephen Kinnock]

I am happy to have conversations with the hon. Lady and other hon. Members, but as things stand it is not clear to the Department or to me how the proposal would work in practice.

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[The Chair]

That is for the wider debate. I call Kim Leadbeater.

[Kim Leadbeater]

It is a pleasure to serve under your chairship, Mr Efford. The amendments relate to the initial discussions with medical practitioners, and it is important to highlight that clause 4(1) states:

“No registered medical practitioner is under any duty to raise the subject of the provision of assistance in accordance with this Act with a person.”

However, subsection (2) states that

“nothing in subsection (1) prevents a registered medical practitioner exercising their professional judgement”.

Doctors and healthcare professionals, like any other group of people, hold a range of views on assisted dying. We need only reflect on the oral and written evidence to see that. However, the British Medical Association has a neutral position on assisted dying, and its representatives were very clear when I met them, and in oral evidence to the Committee, that they wanted an opt-in model for doctors to provide assisted dying, as well as the right to decline to carry out activities directly related to assisted dying, for any reason. These requests have therefore been incorporated into the Bill.

The BMA was clear in its submission that it opposes amendments 8, 124 and 276, as well as amendment 342, which we will come to later. It said that adding a prohibition or limiting factors in the Bill would

“create uncertainty and legal risks for doctors, which may inhibit effective doctor/patient communication and understanding.”

It welcomed the Bill’s provision that a doctor is not under a duty to raise assisted dying, which it felt was necessary to avoid any suggestion that doctors have a legal duty to raise it. It was concerned that these amendments would remove that provision, leaving doctors in a position of legal uncertainty. It said:

“If doctors are concerned that they may be legally obliged to raise assisted dying with all potentially eligible patients, this will impact on how, when, and by whom the issue is raised…It is essential that decisions about when and how to discuss assisted dying are made on the basis of what is best for the patient—rather than to avoid legal challenge. All patients deserve to have this important and sensitive conversation with a doctor who is confident, competent and happy to have the discussion…Doctors should be able to talk to patients about all reasonable and legally available options; a provision that limits or hinders open discussion about any aspect of death and dying is likely to be detrimental to patient care. Doctors should be trusted to use their professional judgement to decide when and if a discussion about assisted dying would be appropriate, taking their cue from the patient as they do on all other issues.”

That is the BMA’s position, and I agree.

As Duncan Burton, the chief nursing officer for England, said in oral evidence to the Committee,

“it is clear that there is increasing discussion in society around death and dying, and I think that is important. It is important that we have discussions and support people with their choices at the end of life, so anything we can do to increase that is important.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 41, Q22.]

Dr Ryan Spielvogel from California told us:

“People cannot make informed decisions for themselves if they do not know what their options are. While this is top of mind for all of you and for the doctors…even if this Bill becomes law, the general population is still not going to realise that it is an option.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 105, Q143.]

He strongly advised against not allowing doctors to discuss patient choice, because in his experience that really hampers their ability to take care of patients. Dr Jessica Kaan of End of Life Washington reiterated the point:

“It is a huge burden to put on patients and their loved ones if they have to bring it up themselves. I would highly caution against any sort of language that requires that, because it is just not fair to them. They are already going through so much”.––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 106, Q143.]

In the light of our recent discussions, I draw the Committee’s attention to the current BMA guidelines regarding patient requests for assisted dying. Those guidelines will obviously need updating if the law changes, but they are comprehensive and give us a much greater understanding of the approach that doctors take when speaking to terminally ill patients, as well as what these hugely sensitive conversations look like, which is really important to know.

The BMA guidance addresses situations in which patients make an explicit request for doctors’ assistance in or information about ending their life or hastening their death. I will refer to that guidance now. The guidance advises the doctors to

“Explore the patient’s feelings, emotions and thoughts….It might be helpful to discuss their understanding of their condition or their fears and concerns…If you feel that the patient is depressed or suffering from another mental health condition, or would benefit from more support, therapy or counselling should be offered.”

Doctors are also advised to

“Use the opportunity to address those concerns: you should also investigate whether other practical arrangements could help improve the patient’s quality of life. Involve a colleague: you might like to involve a more experienced colleague—making clear to the patient that this is what you will be doing.”

The guidance also talks about involving other sources of support:

“you might like to seek support and input from other members of the healthcare team, such as a specialist palliative care team, colleagues from mental health, or the chaplaincy or voluntary services.”

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[Danny Kruger]

The hon. Lady says that the GMC states that doctors have an obligation to raise the treatment options before them, and I think that she thinks that this is a treatment option. Surely the obligation is on doctors to raise assisted dying in all cases where it may be an option for the patient. Does the hon. Lady agree that doctors should offer assisted dying when that treatment may be appropriate for the patient?

[Kim Leadbeater]

I agree that, under the provisions of the Bill, the doctor will have a duty to lay out options available to the patient, if they meet the eligibility criteria—absolutely. That is the whole purpose of the Bill.

[Danny Kruger]

I am grateful to the hon. Lady for giving me a very clear answer. I just want to be totally clear that we understand each other. Is she saying that every doctor facing a terminally ill patient—someone who is eligible under the Bill—should make clear to them that they have the option of an assisted death?

[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.

[Kit Malthouse]

As the hon. Lady will know, a number of our proceedings have been misinterpreted, shall we say, on social media. For complete clarity, with regard to the initial conversation, the Bill leaves to the discretion of the doctor whether it is appropriate to raise the matter, given their knowledge of the patient. They have no obligation to raise it. If the patient themselves indicates a wish to raise the matter, then a doctor is under an obligation to lay out all the options available to that patient. We would not want to leave the outside world with the impression that, in all circumstances, the doctor is obliged to raise the option of assisted dying. It is only when they professionally think it is appropriate or if the patient raises it with them.

[Kim Leadbeater]

The right hon. Gentleman is absolutely right. As I have said, the BMA has been very clear that doctors should use their professional judgment. For example, if they had a patient whom they knew to be deeply religious and who had no interest whatsoever in an assisted death, it is highly unlikely that they would raise the possibility. It is up to them to use their professional judgment to accommodate the wishes of the patient. It has to be a patient-centred approach.

[Danny Kruger]

Will the hon. Lady give way?

[Kim Leadbeater]

I am done.

[Sarah Green (Chesham and Amersham) (LD)]

We have had a good debate on the amendments in this group. I do not intend to push amendment 278 to a vote, and I have nothing further to add to my previous remarks. I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Amendment proposed: 8, in clause 4, page 2, line 16, leave out from “practitioner” to end of line 20 and insert

“shall raise the subject of the provision of assistance in accordance with this Act with a person who has not indicated to that or another registered medical practitioner that they wish to seek assistance to end their own life”.—(Daniel Francis.)

Question put, That the amendment be made.

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[Kim Leadbeater]

I just want to let the hon. Gentleman and the Committee know that I met my hon. Friend the Member for East Thanet last night, and I am delighted to support her amendment 108.

[Danny Kruger]

I am very pleased to hear that. That is very encouraging news, because I have been concerned that the hon. Lady was resting her case on amendments to clause 12, which would not require a palliative care specialist. I am grateful to her for intervening to inform us of that.

Nevertheless, we need to go further. The amendments in the name of the hon. Member for York Central (Rachael Maskell) would require that a specialist, rather than just a GP, leads the initial assessment. The fact is that despite their enormous range of expertise, general practitioners are not qualified or confident in making prognoses of terminal illness. The written evidence from the Association for Palliative Medicine of Great Britain and Ireland cited a 2021 paper showing that over half of GPs were not consistent in how they applied their predictions to different patients. It is important that specialists in the relevant conditions should be involved in these assessments so that patients receive expert input with a lower risk of error.

It is significant that, during the Second Reading debate on 29 November, the House was unanimous in its appreciation of, and praise for, palliative care specialists. It seems strange that their expertise should not be considered essential to a terminally ill person’s consideration for an assisted death. When we look at other countries, we see that it is not an exceptional safeguard. South Australia’s Voluntary Assisted Dying Act 2021 specifies:

“Either the coordinating medical practitioner or each consulting medical practitioner must have relevant expertise and experience in the disease, illness or medical condition”—

we are not using that any more—

“expected to cause the death of the person being assessed.”

I urge the Committee to reflect on the South Australia model, which is good in this regard.

I turn to amendment 53, in the name of my hon. Friend the Member for Runnymede and Weybridge, and amendment 275, in the name of the hon. Member for Sunderland Central. The Bill currently requires doctors to discuss “available” palliative care options, but that may limit what patients are told. Amendment 275 would provide that patients should be informed of “all appropriate” palliative care alternatives, even if they are not readily available in their local area. We do not want patients choosing assisted dying simply because of unequal geographic provision of palliative care making them unaware of alternatives that could improve their quality of life.

I would go even further in support of amendment 53, which hits the nail on the head. Fundamentally, we have always said that assisted dying should be available only to people who palliative care cannot help. That is what amendment 53 entails: it states that assisted dying should be available only for people for whom the relevant palliative care is actually an option and, if they decline it, that would be their choice.

Finally, I will speak to amendments 425 and 426 in my name, which express the need for a proper multidisciplinary team at the right stage of the assisted dying process. The hon. Member for Spen Valley has emphasised the importance of multidisciplinary teams, and I welcome everything she said. It is very good to get her agreement, through the amendments that she has tabled, that two doctors working alone are not enough to protect and support every patient. I welcome that recognition.

Amendments to clause 12 attempt to fill this gap by introducing the expertise of a psychiatrist and a social worker, but they do not fulfil the role of a multidisciplinary panel. Rachel Clarke, one of the witnesses who told us to consider multidisciplinary assessments, has written subsequent to the amendments being tabled: “A ‘judge plus’ panel”—there will not actually be a judge, so perhaps we should call it a “lawyer plus” panel—

“is not an MDT…the panel’s scrutiny comes only at the end of the process, not at the beginning, when a patient first asks for the intervention of assisted dying. Yet this is a moment of peak vulnerability.”

We will get on to the question of whether a judicial panel should replace a High Court judge, but I emphasise very strongly that the introduction of this process is not the equivalent of having a proper multidisciplinary team considering the application for an assisted death at the appropriate moment.

As the Association for Palliative Medicine said last week, the Bill

“does not align with the standard multi-professional team…decision-making process used across the health service.”

It said that the panel is too distant from the patient and comes too late in the process. It said that the Bill would be stronger if the initial assessments were

“carried within a multi-professional team model”.

It is at the stage we are debating here—in the initial assessments—that the MDT needs to apply. For the record, if it has not been properly noted before, I also state that when the hon. Member for Spen Valley quoted Dr Sarah Cox on the importance of multidisciplinary teams, Dr Cox was not endorsing clause 12, but explicitly arguing for earlier introduction of the multidisciplinary process.

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[Kim Leadbeater]

To be clear on the multidisciplinary approach, the point that I was making in that contribution was that that happens already. We are misrepresenting what goes on in current practice with terminally ill patients if we say that there is not a multidisciplinary approach, as indeed various witnesses told us. It is important to acknowledge that.

[Danny Kruger]

The hon. Lady is absolutely right that that is what witnesses told us, but we need to ensure that it happens in all cases; the purpose of these amendments is to ensure that good practice is universal. In the case of assisted dying, bad practice would be terrible. Of course, good doctors seek the guidance of others and do not operate in isolation, but the Bill would allow them to do so. It is important to ensure that the system lives up to the good practice that she refers to.

Committee members will be glad to hear that I am not going to rehearse the arguments about capacity and coercion, but those concerns are why it is important to have a multidisciplinary team at an early stage. The Committee has rejected all attempts to strengthen the capacity test, but it could at least allow a psychiatrist to have an earlier role in the process of checking for capacity. We heard from multiple witnesses about the importance of doing that, and that is what National Institute for Health and Care Excellence guidance states. As the hon. Lady said, it is good practice, so as Professor House said in his evidence to us, it would not be “a terribly radical thing” to do it.

On coercion, as the social worker Jess Carrington wrote to us:

“The only people who are comprehensively trained to recognise signs of abuse, in particular, coercive control, are social workers.”

According to research by Dr David Ross, doctors suspect less than 5% of cases of elder abuse. I will not rehearse the arguments around coercion, but I hope that the Committee will note that the only way—or the best way; it will not be foolproof—to ensure that coercion is spotted is by having a social worker at the very beginning of the process.

I think that is enough from me, Mr Efford—I am sure you agree.

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[Sojan Joseph (Ashford) (Lab)]

I rise in support of the amendments, especially amendments 342 and 425. We have discussed various aspects of the Bill, especially capacity, coercion and medical practices, under many previous amendments. As somebody who worked as a mental health nurse for many years, and who worked as part of a multidisciplinary team, I think that amendments 342 and 425 are some of the most important.

Amendment 342 talks about the preliminary conversation with the medical practitioner with whom the patient makes contact. Do we not think that the doctor who knows most about that patient is the best person to have that preliminary discussion? They will have the most information about them. When the patient, who has gone through so much difficulty, goes to their doctor or to a GP who knows them well and says, “I would like to choose the assisted dying pathway,” would that doctor then say, “I do not want to discuss this. Somebody else will.”?

[Kim Leadbeater]

Is my hon. Friend not concerned about the concept of conscientious objection? The BMA strongly opposes amendment 342, because it does not think doctors should be obligated to have that initial conversation if they do not want to.

[Sojan Joseph]

There are other people who support this concept, and they are the people who will be having the conversation—we have both sides of the argument. I believe that the best person to have that preliminary discussion would be the doctor who knows about that patient the most—about their circumstances, prognosis, family situation and pain. We talk about compassionate care, but where is the compassion in here? I am not saying that another doctor would deny that—but I am talking about compassion. Someone going through the most difficult time in their life would have the confidence to talk to the person who knows the most about them, which is why I fully support that the initial discussion should happen with them. I am not saying that they should say yes or no, but they should be talking about the care provisions and options available to the patient. Amendment 342 is one of the most important amendments we will debate.

I will move on to amendment 425. When I tabled amendment 1, my thinking was that a psychiatrist should be involved in these discussions, but I think amendment 425 will safeguard most of the concerns we have discussed in previous sittings. Amendment 425 talks about a “multidisciplinary team” and having a psychiatrist involved as well. Written evidence was sent to us on 29 January by the Royal College of General Practitioners, which recommended that a separate pathway that

“covered every stage of the process would ensure healthcare professionals of multiple disciplines…who wanted to do so could still opt in to provide assisted dying, but this would be arranged through a different pathway.”

The hon. Member for Sunderland Central spoke earlier about how patients may be going through many multidisciplinary teams already, but it could be that none of those multidisciplinary teams have talked with them about assisted dying. They could have been pharmacists or nurses talking about the patient’s care—not assisted dying. We are talking about setting up a multidisciplinary team with a mental health nurse, doctor and social worker who can look in detail at evidence of the patient’s capacity, whether they are choosing it because they feel they are a burden, and whether there is any coercion. I think that is a safeguard for most of the concerns we have discussed in previous sessions. I would love to see a psychiatrist involved, because psychiatrists deal with some of the most challenging patients, including those with suicidal thoughts, on a day-to-day basis. They are the most experienced people to carry out a capacity assessment and, if they are a part of the multidisciplinary team, it will safeguard the Bill.

I strongly support amendment 425 and I urge Members to consider it. It will reassure many people who are concerned about some of the discussions. I know it also talks about giving power to the Secretary of State to formalise who should be part of the multidisciplinary team, which would be a discussion for later. I thank the Committee for giving me the opportunity to speak in support of the amendment.