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

Debate between Kim Leadbeater and Kit Malthouse

Committee stage
Wednesday 19th March 2025 Public Bill Committees

[Kim Leadbeater]

I will speak briefly on this issue. An important point was made by my hon. Friend the Member for Rother Valley about the protections that clause 25 and these amendments provide for medical practitioners. I think the clause strikes the right balance, but it is important to remove the blanket immunity. My hon. Friend referred to codes of practice and codes of conduct. We have talked a lot about good medical practice from the General Medical Council, and we have a clause in the Bill on codes of practice. I feel confident in the clause, but I am still having regular meetings with officials about the legal implications of the Bill. I will continue those conversations, but I am happy that the clause as it stands serves the correct purpose.

[Kit Malthouse]

Will the hon. Lady respond to the point about injunctions? The Minister might want to respond to this as well. My understanding is that in order to obtain an injunction, someone does not have to establish that there is either a civil wrong or a criminal offence. They have to establish that there is a serious matter to be adjudicated, and that there is a strong likelihood of harm taking place. In those circumstances, a court would consider granting an interim injunction, subject then to a further hearing, ex parte or otherwise. The idea that some kind of civil tort needs to be established is not actually correct in seeking an injunction.

[Kim Leadbeater]

That would be my understanding as well, but I am not a lawyer. Fortunately, a lawyer just tried to intervene on me, so he might want to step in.

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

Debate between Kim Leadbeater and Kit Malthouse

Committee stage
Wednesday 19th March 2025 Public Bill Committees

[Kim Leadbeater]

The hon. Gentleman makes a good point, and I am aware of the Minister’s comments. This will be part of the discussion as we take it forward. That is why this debate is really powerful.

In their written evidence, the trustees at Willow Burn hospice, based in the UK, told us:

“Our Mission is to deliver hospice care of the highest standard to our patients and those important to them...We also believe that we should support and enable people to make the choices that matter to them.”

They said they had not decided their position on assisted dying and remained

“open minded about possible future actions. We believe this stance is in the best interests of patients and their families and reflects the wishes of our community.”

I welcome that open-minded approach and their commitment

“to put care, compassion and dignity at the heart of everything”

they do. Contrary to what the hon. Member East Wiltshire has said, the picture is not black and white. I agree with my hon. Friend the Member for Ipswich in that regard.

Colleagues may remember the evidence given to the Committee by the CEO of Hospice UK, Toby Porter. He clarified for us that institutions do not function in the same way as individuals when it comes to conscience-influencing decisions. He told us:

“There is this idea that your individual opinion guides everything, but with a hospice charity the opposite is true. As many Members will know because of their own work as trustees, the trustees and leadership of a hospice team are required to put personal opinion and interest to one side and always act in the best interest of the charity’s beneficiaries, who are the population.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 195, Q255.]

It is also important to remember that international experience shows that up to 30% to 40% of patients who sign up to the assisted dying process ultimately do not access it. Palliative care may meet their needs, or they may simply change their mind. However, we also know that the reassurance and comfort that the choice of an assisted death provides alongside other treatment and care is really important to them, and I do not believe that reassurance should be denied to some people because of the institution they happen to be in.

[Kit Malthouse]

The hon. Lady is outlining the issues very effectively. No one, of course, is saying that anybody who works at the hospice that may object has to participate. It may say, “No one here will assist.” We have talked about the importance of place. To a certain extent, I have a right as a tenant in a place where I am resident. It seems that my hon. Friend the Member for East Wiltshire is proposing actively to prevent someone from being able to access this in a place that they choose. That feels to me the wrong balance. I wonder whether that is broadly where she is heading.

[Kim Leadbeater]

The right hon. Gentleman makes an important point. The word that we have used a lot—maybe not enough in some respects—is choice. That is important for individuals, but it is important for institutions as well. Putting an institutional opt-out in the Bill would risk creating confusion and distress for patients and their loved ones, and indeed for staff and volunteers.

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

Debate between Kim Leadbeater and Kit Malthouse

Committee stage
Tuesday 4th March 2025 Public Bill Committees

[Kim Leadbeater]

I rise to support my amendments in this group, which seek to clarify the details that must be included, under regulations, in the first declaration, and the report that is consequent on that declaration. While I believe it was useful on Second Reading for MPs to be aware of the content of the form that the doctor should complete, the advice I have received—with which I agree—is that the details are more appropriately a matter for regulations. There is always a balance to be struck, but it would not be reasonable to expect the House to have to consider changes in primary legislation simply to alter the contents of a declaration, important though the details are.

The proposed changes go further in a way that I believe should greatly reassure the Committee. As we discussed this morning, they make it clear that a person must have been over the age of 18 when the first discussion under the Bill took place. They also require doctors not just to make formal declarations, but to produce reports covering the eligibility of the person to request assistance, the nature of the assessments they have made, their discussions with that person and, crucially, the person’s understanding of those discussions and of what the process entails. This will ensure that all the relevant discussions have been recorded and understood, and that an account of them has been recorded and will be available for future reference. For reporting purposes, if a person applying for assistance is found not to be eligible, that information will be recorded too. I hope the Committee will agree that further safeguards will be put in place as a result, without imposing additional stress or burdens on terminally ill patients during such a different period.

[Kit Malthouse]

I rise to speak in support of amendment 184 and to point out that I have now withdrawn amendments 329 to 334, so we will not vote on them later. Like the hon. Member for Spen Valley, I had thought that although it was sensible at Second Reading to have schedules to the Bill that laid out the forms, they were quite limited and strict in their form, so we needed more flexibility and the opportunity for the House, by regulation, to add content to the required forms in the future. I also wanted to insert a declaration by the person that they had had an initial conversation covering all the factors in the Bill and, critically, that they understood the information that had been presented to them. Amendment 184 would do exactly that.

For Members’ reference, I tabled similar amendments that would have done the same with the other schedules. Following conversations with the hon. Member for Spen Valley, I have now withdrawn them all and amalgamated them into amendments that would do the same as those that she has tabled, along with some additional bits and pieces. Amendment 184 is relatively self-explanatory.

I want to speak against amendment 277, which would impose a time limit of 28 days between diagnosis and the first declaration of a terminal illness. In a lot of circumstances, that would be a very difficult time delay for people to face. As the hon. Member for Bradford West, who tabled the amendment, will know, there are already periods of reflection in the Bill, although it also contains provision for a compressed time limit for those who face imminent death. Particularly for those who are unfortunately diagnosed with certain diseases, adding 28 days will insert a delay at a time when people who are facing what they do not want to face—a horrible death—need as much time as they can to get through the process. For example, if we take together all the factors for people who are sadly diagnosed with pancreatic cancer, the median survival is six to 12 months.

I do not know if the hon. Lady knows this, but pancreatic cancer is a particularly unpleasant cancer, not least because it does not exhibit symptoms in its early stages—people do not know they have it until quite late in its development. Treatment for it is not well advanced, and many people diagnosed with pancreatic cancer sometimes have only weeks to live. The idea that we should make them wait 28 days before they can even start the process seems impractical and, I am sorry to say, cruel to them in many ways. It is worth remembering that this is not a six-month “bang, I go and do it.” Most people who have a terminal illness will begin the application process at six months. Once they have the ability to ask for this service, they will then wait until they decide that their life has come to its end, at the time and place of their choosing. That might be at six months, or it might be at six days. The point of the Bill is to put the power to make that decision in their hands. Although the Bill has periods of reflection—it recognises that people need to sit and think about these things—imposing an absolute 28 days on everybody, without accounting for what stage they are at in their disease and how long they have to live, is not necessarily a sensible amendment, and I will oppose it from that point of view.

I understand the objective of my hon. Friend the Member for East Wiltshire in tabling amendments 403 and 404, which are about informing family. I would hope that those are the sorts of discussions that doctors would have—perhaps one of the doctors on the Committee can tell us. On whether we should put that on the face of the Bill, I have been persistent in trying to make sure that the conversation is not guarded. The amendments ask whether I have any family—I am not quite sure what “family” means. Does it mean my children? Maybe I do not want to tell my children. Does it mean my next of kin? I do not know. Is it distant relatives? Is it my whole family? There are problems with the definition of “family”.

While I will not support the amendment, I understand what my hon. Friend was trying to do. I would hope that those are the kinds of sensitive matters that a doctor would tease out of an individual as they look for the various items that we have put in the Bill to make sure that the person is making the decision on a sound basis as a settled view and has the capacity to do so.

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

Debate between Kim Leadbeater and Kit Malthouse

Committee stage
Tuesday 4th March 2025 Public Bill Committees

[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.

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

Debate between Kim Leadbeater and Kit Malthouse

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Kim Leadbeater]

That brings me on very nicely to my next point, so I thank my hon. Friend for his intervention. At the moment, the Bill accommodates a two-year implementation period, which is really important because it will take time to put the procedures in place: it will take time to train people and it will take time to work holistically with the overall healthcare system. It could end up being longer than two years. If that is the case to put all the robust systems in place—to improve things, and to work holistically with palliative care and other aspects of the NHS—then that is the right thing to do, and I would be open-minded to a conversation about that.

To finish, I also note that the General Medical Council’s “Good medical practice” guide, which is the framework of professional standards, already provides that in providing clinical care a doctor

“must refer a patient to another suitably qualified practitioner when this serves their needs”.

This is what doctors do: they refer if they need extra advice; they take a holistic approach.

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

I just want to quickly point out that we have a check on the conversations that happen in the first stages. In clause 8, which covers the second doctor’s assessment, that second doctor must be satisfied that the individual has a “clear, settled” and, critically, “informed” wish to end their own life. So, there will be a doctor who is verifying that the person is informed properly about their options. My concern about the amendments is that, as the hon. Lady says, we are inserting now a third doctor into a system which, with regard to the panel, will already have three, four or five specialists involved in the assessment of the care.

[Kim Leadbeater]

The right hon. Gentleman is absolutely right. It feeds into comments that have already been made about how difficult we are making the process. I agree that this should be a difficult process—it should be a robust process, with thorough checks, safeguards and balances throughout—but we are in danger of forgetting the dying person at the heart of the process.

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

Debate between Kim Leadbeater and Kit Malthouse

Committee stage
Thursday 30th January 2025 Public Bill Committees

[Kit Malthouse]

Q Julie, you said that you got to a point where Guy said to you that he had made his mind up. Had he made his mind up after conversations with doctors about what his options were?

Julie Thienpont: No. He made up his mind long before he was even sick. He felt that his mother had quite a traumatic passing, and said that she expressed a view that, had it been an option, she would have taken it. He had said from then, “That is the way I want to die. I want to die that way. I don’t want to be lingering in a bed, whether I am in pain or not. I don’t want that to happen.” That may not be something that I would choose, but that was his absolute choice—I have no doubt whatsoever. He said that to the team who had been looking after him when he first broached the subject, and I think they first of all thought he was not terribly serious. Then, when they realised he was, he said, “It’s my life, it’s my death—I want to choose.” I think that is what it is all about: allowing people that option to choose.

[Kim Leadbeater]

Q I wonder if you have been on your own journeys around your personal views on assisted dying and choice at the end of life. I have spoken to lots and lots of people about this, and anybody who has had experiences similar to yours are very clear that the law needs to change. People who have not been as close to this issue as you have often hold a different view.

Prior to your personal experience, you might have had a different view or friends and family who had different views. For me, speaking to people who have had the experiences you have had, it becomes very clear that we have problems with the law as it stands, or the lack of the law as it stands. Would anybody like to share their own journey about that?

Pat Malone: From my standpoint, I did not give it a lot of thought until it started impacting on the family. But I understood exactly why my sister and my brother committed suicide. I would hope that this Bill could be enacted when my time comes.

Liz Reed: I had not given it a huge amount of thought; I am relatively young. I suppose if I was asked at the time I would have said, “Yes, sounds fine,” but I think I had also grossly misunderstood what it would mean for someone to go to Dignitas. There is a flippant comment that goes around—I can remember my dad saying it: “Oh, I’ll just go to Switzerland.” It is just not that easy. People I know and have met, like Pat, have had family members go to Dignitas, and it is actually a deeply traumatising experience. People’s lives are cut much shorter, they cannot enjoy their time and so on. I absolutely agree that I had not given it much thought.

I remember, on the day my brother died, getting back to where we were staying; I sat there and thought, “What would have happened to him?” I wrote to my MP, to say, “Hello, I am just wondering what would have happened, out of interest.” That is how I got involved. Had he been here, what would have happened to him and how long would he have had to limp on? You hear enough stories of people begging to die at the end of their lives, and I am really thankful that he did not have to.