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

Kim Leadbeater Excerpts

Committee stage
Wednesday 26th February 2025 Public Bill Committees

[Sojan Joseph]

I agree. As part of the code of practice, professionals are expected to complete the training that has been outlined already, but I am not confident that that is actually happening. Saying that there will be training does not reassure me that it will be robust enough.

[Kim Leadbeater (Spen Valley) (Lab)]

The hon. Member for East Wiltshire seemed reassured by the fact that there will be training in the Bill—it is on the face of the Bill and will therefore definitely take place—

[The Chair]

Order. Can Members address the Chair, not turn to face other Members?

[Kim Leadbeater]

I am pretty confident that an amendment is going to be tabled, if it has not been already, that would change that “may” to “must” in the clause on codes of practice.

[Sojan Joseph]

I would be happy to see the Bill make a strong case that the people who will take part in this process have training before they do so.

My larger issue is around the independent doctors. Again, I will use some examples of how the Mental Health Act 1983 has been carried out in its current format. Those cases always use a section 12-approved doctor, who is a second doctor and they may not have had any kind of contact with the patients. We may or may not end up in that sort of similar situation. That is the point I was making earlier.

As the Royal College of Psychiatrists mentioned, capacity can change and decisions are opinions with margins of error. I mentioned my experience working in mental health wards earlier, and the hon. Member for East Wiltshire talked about the capacity assessments carried out when patients are standing by or threatening to jump off a bridge. I am not comparing these situations or saying that they are similar, but we have to make decisions based on capacity. In my experience of discharging people from hospital in a mental health unit, when somebody is threatening, “I’m going to kill myself if you discharge me”, the multi-disciplinary team—the doctors and the nurses—have to make a decision on whether to discharge the patient based on their capacity at that time.

Capacity is assessed based on whether someone is able to understand information—can they retain, use and weigh information, and can they communicate their decision? We cannot compare that with the situation of somebody asking for assisted dying. I want to make it clear that the capacity assessment is the key. I would love to support this amendment. As I said earlier, this issue was one reason I voted against the Bill on Second Reading, but passing this amendment might change my position and I would love to support it.

[Jack Abbott (Ipswich) (Lab/Co-op)]

It is a pleasure to serve under your chairship, Mrs Harris. I will speak specifically to amendment 50. I fully appreciate and accept the points made on a number of occasions during this debate by my hon. Friend the Member for Stroud—that many proposed changes either already feature in the Bill or are the current course of practice for doctors and other medical professionals. As I have said previously, I am not generally in the business of supporting amendments that, in my view, overcomplicate issues, are ambiguous and could lead to other consequences or are simply repetitious, but I do not think that amendment 50 would do those things.

Some proposed amendments are featured in the Bill, either directly or implicitly, but I do not see how amendment 50 would overcomplicate or lead to ambiguity. It is a quite direct and, dare I say, common-sense ask that we should all support. I take the point made by the right hon. Member for North West Hampshire on proposed new subsection (2)(f) of clause 3, as inserted by amendment 50, though I confess I did not read it in the same way that he did. I read it as saying that anyone looking to go down this route should be made aware of the legal consequences. That is a sensible suggestion.

I do not expect a doctor would be going into people’s bank accounts or deeply understanding their legal affairs, but due consideration, advice and information should be imparted to the person who is applying. That is how I read it; I did not think it would be a hugely intrusive, in-depth study into a person’s personal finances.

[Kim Leadbeater]

Does my hon. Friend acknowledge that it could be a problem and an area of concern if we have two Members who have both read an amendment but have different interpretations of it?

[Jack Abbott]

Potentially. There are certain words and clauses on which everyone will come to very different conclusions. This has been the case throughout the entire Committee process, which is approaching its 16th sitting now. It has already been said that this provision could be tightened up, and I welcome the Ministers’ input in helping us to understand their position on aspects like this.

In my view, there is nothing in amendment 50 that specifically says, “This would be an intrusive look at someone’s personal finances.” The measure—on the advice that would have to be given—is a proportionate one. Yes, it could be reasonably argued that proposed new subsection (2)(c) to clause 3, as set out in amendment 50, has already been covered under things that we have discussed extensively, such as coercive control and pressure. Equally, I do not think that any of the language in the amendment would necessarily overrule any other issues or make them more ambiguous. From that point of view, I will be supporting the amendment. I do not think there is anything in it that would override or lead to complications with any other part of the Bill, but it does put in black and white on the face of the Bill some of the very basic processes that should be happening.

I appreciate that many of the points in amendment 50 are already happening or feature directly or implicitly in the Bill. However, I do not think there is any harm in the amendment; in fact, given the nature of what we are talking about and the fact that this legislation is unprecedented in this country, we should be very clear and direct. I do not think it will lead to confusion for our medical profession. These are straightforward and common-sense asks. On that basis, I will be supporting this amendment.

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[Stephen Kinnock]

The Bill has a two-year commencement date. Within that two-year period, the Secretary of State will make regulations to determine precisely the kind of training and capacity building that are required, and that training will be delivered within that two-year period. Those sorts of issues will be dealt with if the Bill gains Royal Assent.

Clause 3 sets out that any assessment as to whether a person has the capacity to make a decision to end their own life is to be determined in accordance with the Mental Capacity Act 2005, sections 1 to 3 of which establish the principles and criteria for assessing a person’s capacity to make decisions. Section 2 of that Act establishes that a person lacks capacity if they are unable to make the decision in question, owing to an impairment or disturbance in the functioning of the mind or brain. Section 3 states that a person is unable to make a decision if they are unable to

“understand the information relevant to the decision…retain that information…use or weigh that information”

as part of the decision-making process, or communicate their decision.

As the Committee will be aware, the Mental Capacity Act has for some time provided a robust framework for important and difficult decisions, and it is familiar to clinicians. I hope that my remarks have been helpful to the Committee in considering the Bill and the amendments.

[Kim Leadbeater]

It is a pleasure to see you in the Chair, Mrs Harris. I welcome another good debate on capacity, following our thorough deliberations a couple of weeks ago. In that debate, I made my views on the Mental Capacity Act quite clear. Although I have listened intently to colleagues’ contributions today, it remains my view that this well-established piece of legislation is the right vehicle for assessing capacity for the purposes of the Bill. I therefore commend the clause to the Committee.

[Daniel Francis]

I will not speak for long. I spoke in great depth about my amendment and other amendments this morning.

Over the past few weeks, hon. Members will have heard, long and hard, about where I come from on the clause stand part issue. This has been one of my greatest difficulties. It drove me to oppose the Bill on Second Reading, and I continue to have grave concerns that the Mental Capacity Act 2005 was not written for this scenario. I draw Members’ attention to my exchange with my hon. Friend the Member for Stroud this morning when, on decision making in the Mental Capacity Act, it was accepted that it has to be presumed that somebody has capacity, and in those scenarios a doctor must assist in the decision-making part of the process.

My great concern—I am sure we will continue this debate when we come to clause 4—has been around people with learning disabilities, and that is where I have ended up in this place. I have said this before and I am sure I will say it again in my contributions: people may think that I have a vested interest, but actually my daughter will never have the capacity to make these kinds of decisions. I am here in this Committee because hundreds of thousands of people in this country are involved in family decisions where a child or a loved one does have enough capacity. The Mental Capacity Act was rightly written to allow them to live independently, buy a coffee and do their banking, but I do not believe it was written for this scenario, so I will support the amendments.

I presume that the amendments may well be rejected. I look forward to discussing, in due course, the amendments tabled by my hon. Friend the Member for Hackney South and Shoreditch (Dame Meg Hillier), because they bring us into a scenario that does exist in the medical field, in respect of discussions with the doctor. As things stand, I will support the amendments. Unfortunately, I will oppose clause stand part simply because I continue to believe, as I did on Second Reading, that the Mental Capacity Act 2005 was not written for this scenario.

Question put, That the amendment be made.

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[Kit Malthouse]

I rise to speak briefly to amendment 368, which stands in the name of my right hon. Friend and constituency neighbour the Member for East Hampshire (Damian Hinds). I thought it was an interesting amendment to table, not least because I witnessed the introduction of the Down Syndrome Act 2022 by our colleague—sadly, now former colleague—Dr Liam Fox. He was a casualty of the last general election and is a great loss to the Chamber. His successor should certainly feel guilty about what he achieved, in my view; I am not sure that everybody would share that view, but there we are.

The Down Syndrome Act was an important private Member’s Bill that sought to recognise the status of people with Down’s syndrome in society and to sensitise institutions to their welfare and wellbeing. Essentially, it provides that guidance should be issued by the Government to various institutions across the health service and civil society generally, that would be used to accommodate the needs of and be sensitive to dealing with people with Down’s syndrome, particularly as they reach adulthood.

Although I am sympathetic to the amendment’s aims, there are a number of issues with it. I think its objectives could be, and frankly should be, addressed in other ways. Essentially, my reading of the Down Syndrome Act is that it is aimed at institutions such as health trusts and local authorities, not at individual practitioners. Unfortunately, under that Act, which asked the Government to issue guidance on Down’s syndrome, no guidance has been issued. We have a rather good legislation website in this House that tells us whether a Bill has had an impact or had any effect. If we look up the Act on it, the website tells us that there has been no effect yet. Certainly no guidance has been issued.

I am concerned about the interplay between the Down Syndrome Act and this Bill. However, there are opportunities where we can recognise the particular needs of those with Down’s syndrome, who will often be life-limited because of their condition. That needs to be taken into account. Amendment 394, which refers to advocates, will be important from that point of view, and new clause 8, which will hopefully be agreed to—I will certainly be supporting it—includes a duty to consult in regulation. I invite the Minister to make a commitment in his winding-up speech that groups representing those with Down’s syndrome would be part of the consultation package. I am sure that that is perfectly doable.

Clause 30, which deals with codes of practice that the Government will issue, and clause 31, which mandates the chief medical officer to produce guidance for medics and some of the training that will be required, should include modules on dealing with individuals with Down’s syndrome. I do not know whether anyone is intending to press amendment 368, and I do think that there are problems with it, but my undertaking is to go away and talk to my right hon. Friend the Member for East Hampshire about what could be done, perhaps at a later stage.

[Kim Leadbeater]

I will speak to the amendment shortly, but will the right hon. Gentleman take a commitment from me that I will happily join him in those conversations if it is at all helpful?

[Kit Malthouse]

I am very grateful to the hon. Lady. It would be fantastic if she did that. However, I think we could probably deal with the intent of the amendment if the Minister were willing to commit—it is not a big commitment to make—that in the making of regulations and in the instructions to the CMO to produce guidance, he will stress the importance of consulting those with Down’s syndrome and dealing with the issues that they face, notwithstanding the impact of new clause 8 and amendment 394, and recognising that there is no guidance yet under the Down Syndrome Act. That might be a more belt-and-braces approach to what the amendment is trying to achieve than hoping that that Act and this Bill will interact in a beneficial way.

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[Kim Leadbeater]

The hon. Member is making an important point. As someone with friends who have children with Down’s who, as he says, absolutely have very fulfilling lives, I hear every word that he is saying. Will he take a commitment from me back to those organisations? I commit personally to meeting them, perhaps alongside the right hon. Members for East Hampshire and for North West Hampshire, at a time convenient to them.

[Danny Kruger]

I am grateful to the hon. Lady and am sure that that will be welcomed. It does rather go back to the point that the organisations made at the outset, which is that they wish they had had more consultation earlier on, but I understand why that was not possible in all cases.

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[Danny Kruger]

I hope that the hon. Member is not suggesting that all 600 would be averted by the Bill. He might be right that some would be, and I recognise that. However, the purpose of amendment 270 is to ensure that people who might be suicidal receive an assessment, whether they are inclined to apply for assisted death, if it is legal, or to take their own life in an unassisted way. If they expressed a wish under the clauses of the Bill to have an assisted death, they would have proper psychosocial assessment and proper steps would be taken to ask, if we are prepared to make this distinction, “Is it just that they are suicidal and not wanting an assisted death?” I find the distinction difficult to parse logically, but if that is the distinction that we are making, let us put it into the Bill and ensure that people are properly cared for in that very dangerous time after they get a terrible diagnosis.

I would like to quote from the written evidence that we received from a member of the Pathfinders Neuromuscular Alliance, which is a user-led charity for those with muscle-weakening conditions such as muscular dystrophy. This person said:

“I’ve been there, I’ve wanted to die, and I’ve been in the position where I would take that option if it was given to me”—

not if it was not. Interestingly, he would have taken that option if it was given to him, rather than suggesting that he was going to take his own life anyway. The quote continues,

“but looking back I can see I was depressed and now I’m so glad that I didn’t take that option.”

At the moment, the Bill does not require anyone to explore these psychosocial factors, and although the person can be referred to a psychiatrist—and, if we go on to accept the amendment, we would ensure that they must be if the doctor concludes that there is doubt—I do want to make a point about referrals. There is an assumption that the doctor will refer the person to a psychiatrist, but that will only happen if they have done their assessment well. We are assuming that they will do the assessment well, but we have heard repeatedly that such assessments are often not done well. I welcome the coming amendment—amendment 6—that says that if the doctor concludes that there is doubt about capacity, they “must” refer. That would be a step forward, but it is not sufficient. Even the psychiatrist will only answer the question, “Is this person able to make a decision?” That does not address any of these other factors.

In Oregon—we refer often to Oregon, and although this Bill is supposed to be the safest in the world, it is not as safe as Oregon in this respect—the doctors may refer the patient for counselling if the patient

“may be suffering from a psychiatric or psychological disorder or depression causing impaired judgment”.

To conclude on this point, psychosocial care is fundamental to good end-of-life care. Members of the Committee have said that palliative care and assisted dying can complement each other; this assessment should be part of that picture, and it needs to come before the first declaration, because once somebody has signed that declaration they are already on the pathway—and there will not be an obligation on them to receive palliative care advice either, because we rejected that amendment. Amendment 270 provides for people’s needs to be met at the first opportunity.

Lastly, on the question of doctor-initiated conversations, I quote Professor Brassington, who submitted evidence to the Committee:

“In normal medical practice, the patient approaches the medic with a problem, and the medic suggests possible courses of action, not all of which would have been considered by the patient. The patient permits further action. But it is implicit that the practitioner who makes the suggestions thinks them good, and the patient is entitled to think that the practitioner endorses them all.”

In a normal scenario, the doctor would think about what is good for the patient. To raise an option is to endorse and encourage it, perhaps as one among a number of other options. It is to suggest that this is a good option—it might not be the one the doctor thinks is the best, but it is a good option for the patient; otherwise, they would not raise it. They can only make a recommendation for options that they consider would be appropriate to the situation.

[Kim Leadbeater]

On that point, I fundamentally disagree, although I will stand corrected by medical colleagues. I do not think that the doctor in this instance is making any suggestion; what they have the responsibility to do is to lay out the options, but it is up to the patient to choose. I would imagine—again, I will stand corrected by medical colleagues—that that is standard practice.

[Danny Kruger]

This is an important debate to have, because the clear implication of a doctor making a recommendation is that this option would be good for the patient. It is one of many—

[Kim Leadbeater]

It is not a recommendation.

[Danny Kruger]

Indeed, it is not a recommendation; but in laying out this option for the patient, the doctor is clearly communicating that it might be the right thing for the patient to do and that it might address their needs. If the suggestion is that they are making a suggestion that might not be good for the patient, then that is of serious concern to us, is it not? The clear implication of current law—with reference specifically to Montgomery v. Lanarkshire Health Board, which determines that we have patient-led medicine in this country now—is that a doctor is obliged to set out all the options that he or she thinks might be appropriate to the case. That goes back to the question about whether we regard assisted dying as a healthcare intervention, but if we do regard it as one, then if it is suggested, it is because it might be the right thing for the patient to do. Implicitly, there is a suggestion that it could be the right option for the patient.

It is interesting that clause 4(1) disapplies Montgomery and says that a doctor is not obliged to make this suggestion. That poses the question: is it therefore a treatment at all?

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[Danny Kruger]

That is absolutely right. Either this is a medical treatment—in which it should be obligatory for a doctor presented with a patient who qualifies under the Bill and has the symptoms that we are talking about to say, “By the way, there is also this option”, which is what I think my right hon. Friend the Member for North West Hampshire is suggesting—or it is not a healthcare treatment at all. Clause 4(1) states that they do not have to raise the subject, in which case they should not raise it, because to raise it is to put it on a par with other healthcare options and therefore implicitly, or indeed pretty explicitly, to say, “This is an option that might be good for you”, which is an enormous communication to make.

I go back once again to the difference between this and withdrawing treatment. I have to say this so many times because it is so important: this is not equivalent to withdrawing treatment because this is not specific to the illness being treated. A person can have a treatment or not, and that will address the condition that they are suffering from. The termination of life does not address someone’s symptoms, treatment, condition or illness; it kills them. It is a different order of intervention. I do not think it is a healthcare treatment at all, and it should not be treated as such.

[Kim Leadbeater]

The hon. Member makes a valid point about the circumstances in which this option would be considered a valid choice for a patient. That brings us back to the fact that we are talking about someone who is going to die; the question is how they are going to die. It is not someone who is going to get better—they are not going to wake up and find that everything is going to be fine. This is about what that death looks like.

Pat Malone—one of our witnesses in oral evidence—had a brother who had seen his father die under circumstances so horrible that he had begged his children to help him die. Then the brother got the same condition and could see what his death could look like. Does the hon. Member not value the choice that assisted dying would give that patient to take back control of what their death could look like, with their loved ones around them? This is a very real situation for, sadly, lots of people, and could be where that choice could be valid.

[Danny Kruger]

I was not asking for cases in which it might be the right choice for somebody—I recognise the argument there. I am asking when it might be appropriate for a doctor to suggest it. In the case of the Malone family, if this law had been enforced, they would have requested it themselves. Again, I want to know under what circumstances it would be best for the patient—in their interests—for an assisted death to be suggested to them by a doctor, when they had not raised it themselves. Under what circumstances might that happen?

[Kim Leadbeater]

The concept of a suggestion is also not particularly accurate—it is a choice, in the same way that the other options are a choice. Families could only ask for this conversation if they knew about it, and while we are all living and breathing this Bill at the moment, even if it does come to fruition and the law is changed, there will be people who do not know about this option. Surely, it would not be informed consent for a person to suffer a horrible death if they were not told about this option.

[Danny Kruger]

On the suggestion that people will not know that this option is on the table, who are we talking about in those circumstances? I suggest we would be talking about people who are extremely marginalised, and I would be very concerned about a doctor suggesting an option to them. There may be a tiny number of people who would not know that this option is legal, but I am afraid it would be very widely known the minute that it is law.

[Kim Leadbeater]

rose—

[Danny Kruger]

I will certainly give way in a moment. An enormous number of people will be dragged into the scope of the Bill by suggestions being made to the vulnerable people that we are concerned about. I really do invite her to answer this as honestly as she can; does she not accept that being given this option by a doctor—given the doctor’s position of power and the vulnerable position that the patient is in—could well be interpreted as a suggestion that this might be a good thing for them to do? Does she does not recognise that?

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If the Bill becomes law, it will mark a departure from previous practice in revolutionary ways, so we have to consider the possibility that it should also depart from the previous practice, in which doctors should be able to discuss all pathways with their patients. I think it should, and the key factor for me is the testimony given to the Committee by palliative medicine specialists: doctors like Jamilla Hussain and Rachel Clarke.

[Kim Leadbeater]

In the interests of balance, would my hon. Friend also acknowledge the testimonies we heard from Dr Jane Neerkin, Dr Sam Ahmedzai and other palliative care specialists who had a very different view?

[Naz Shah]

I do acknowledge that, but ultimately I am a Member of Parliament for my constituency of Bradford West, and we have a doctor who has been doing research with its communities. I come from a community where there is huge deprivation: Bradford West has two of the most deprived wards, and one of the youngest populations. During covid, people there were DNR-ed—so they do not have that confidence.

I accept that others may have different opinions, but I come back to the point that I made earlier: which case is more convincing? Do we raise the safeguards? Dr Jamilla supports assisted dying but she made it clear that, although she supports it for some people, who may well benefit from assisted death, the truth is that there are people who the Bill fails to protect. That is what I am speaking to, and that is what amendment 8, tabled by my hon. Friend the Member for Blackpool South, speaks to.

The Committee is talking about people who are facing the ends of their lives. On every day of their working lives, doctors who have spoken to this Committee talk to those people. They are treating exactly the kind of patients who may seek assisted dying if the Bill becomes law. They are deeply concerned that if doctors raise the subject of assisted dying with their patients it will, in too many cases, seem like a suggestion.

I appreciate that this is a private Member’s Bill and not a Government Bill, but that places an even heavier burden on us to get things right. We cannot ignore the testimony of those who have the most relevant experience. Too many Government Ministers, MPs and local councils from all parties, including mine, have done that in recent decades.

For example, the sub-postmasters and sub-postmistresses said for years that the Horizon system was not working, but Ministers from my party, and from the Conservatives and the Liberal Democrats, said that they were wrong. Time and again, they were dismissed. Ministers thought that they knew more than the people who were using Horizon on a daily basis. Now we know exactly who was right.

Similarly, for three decades, several thousand NHS patients, mainly haemophiliacs, claimed that they had been negligently given transfusions of blood infected with hepatitis and HIV. Minister after Minister, first from the Labour Government of the ’70s, then from the Conservatives, then Labour and then the Conservatives again, insisted that no such thing had happened. Some conceded that perhaps it had happened—but on a small scale. In 2017, to her credit, the then Prime Minister Theresa May announced a public inquiry into those claims. It turned out that the patients were right and the Ministers had been wrong.

That is what I am talking about. Several highly experienced palliative medicine doctors warned us—