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

Kim Leadbeater Excerpts

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[Danny Kruger]

We are trying to avoid suffering, pain and bad deaths. We all share that view. Indeed, later amendments look explicitly at the purpose of an assisted death and the question of the avoidance of pain. I am simply making the important distinction between the decision to withdraw treatment and the decision to administer fatal drugs, which, as I say, are qualitatively different—different in principle and different in practice.

[Kim Leadbeater (Spen Valley) (Lab)]

To build on the point made by the right hon. Member for North West Hampshire, this is the heart of the issue. You are right that they are slightly different things.

[The Chair]

Ahem.

[Kim Leadbeater]

Sorry, Sir Roger. The hon. Member is correct. It gets to the heart of whether we think this is the right thing to do. The Bill Committee’s job is to put that decision back to the House. It is not for us to decide today; it is for us to have the discussion about how we can improve the Bill and send it back to the House.

The hon. Member is absolutely right to say that it gets to the heart of the issue. I think dying people should be given that choice. In the same way that they are given the choice to have treatment withdrawn or the machine turned off, they should be given the choice to take control and to have the autonomy and dignity that assisted death will provide.

[Danny Kruger]

The hon. Lady has expressed very well her whole purpose for the Bill. In a sense, all the debates we are having about safeguards, protections, process and eligibility are secondary to her purpose, which is to give autonomy to patients. One has to ask about the purpose of the safeguards, particularly the one on people having to administer the drugs themselves. In all jurisdictions where physician-assisted suicide is legal, that is the option that people overwhelmingly opt for—I certainly would if I were in that situation.

The hon. Lady is right, and that is what she is trying to do: she simply wants the Bill to go through. I take strong issue with her implied point that our purpose here is simply to work out the Bill’s implementation. We are looking at each clause, line by line, to decide whether it is safe or not. As she said herself at the time, the decision on Second Reading was a vote in principle to continue the discussion, which is what we are doing now. We are closely and minutely examining whether every clause is safe.

[Kim Leadbeater]

On that point, it is not an either/or. It is not just about passing legislation that improves choice and gives autonomy and dignity to dying people, and indeed fixes the current failings of the law as it stands, as we have discussed in great detail. It is about providing safeguards that make sure that is done safely, securely and robustly, and that address the issues and concerns we are discussing. It is not an either/or and it is important to make that distinction.

[Juliet Campbell (Broxtowe) (Lab)]

rose—

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[Naz Shah]

I have tabled an amendment to a later clause that talks specifically to that. The word “only” needs to be removed. We have seen this in Oregon, which I will come to later. We heard in the oral evidence that 60 women assessed to have capacity died because they had anorexia.

[Kim Leadbeater]

In respect of those numbers, it is important to be really clear that the vast majority of those circumstances were in the Netherlands and in other jurisdictions that have a much broader set of eligibility criteria than the Bill. We are talking about a very small number of cases in jurisdictions with a similar set of criteria to ours. It is important to make that point.

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[Naz Shah]

I thank the hon. Member for his intervention, but we are not here legislating on anorexia; we are here legislating on the option of assisted death. I am trying to understand where he is going with that argument. It genuinely does not make sense to me.

[Kim Leadbeater]

I do not think that the hon. Member for Solihull West and Shirley is saying that this is about people with eating disorders or anorexia; he is asking about people who are terminally ill who stop eating and drinking. They do that as a course of action to essentially end their own lives. It does happen on a fairly regular basis. We have had testimonies from families who have watched loved ones essentially starve themselves to death. It is different from having an eating disorder or being anorexic.

[Naz Shah]

My understanding, when it concerns eating disorders and anorexia—let me get this right: are hon. Members trying to equate new clause 1 with that condition?

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[Stephen Kinnock]

The hon. Member makes an interesting point. I simply reiterate that this is a very dynamic Bill Committee; I believe that 362 amendments have been tabled. Given the Government’s focus on establishing the Bill’s implementability, the coherence of the statute, the legal dimensions and the complexity of what we are dealing with, we took the position that it was better to wait for the Bill to clear Committee stage before producing an impact assessment. To do otherwise could have involved a large amount of second-guessing based on radical changes that might well have come out of the Bill Committee. I reiterate the logic of that sequencing.

On the point about the established legal framework, which clinicians have been applying since 2007, “capacity” would still be used for other decisions about care and treatment.

I turn to amendment 202, tabled by my hon. Friend the Member for Spen Valley on the advice of the Government. It ensures that the assessment of “capacity” is utilised by the assessing doctor, and corrects a typographical error in clause 9 to ensure that an assessment of capacity will apply consistently throughout the Bill. As I said earlier, how and whether the law on assisted dying should change is a matter for this Committee and for Parliament as a whole. However, I hope that these observations are helpful to the Committee when considering potential changes put forward.

[Kim Leadbeater]

I will try to keep my comments brief. It is excellent that we have had such a thorough debate on this particular issue, but I am also very conscious of time.

I will do the quick and easy bit first. As the Minister has just said, amendment 202 is to correct a typographical error in the initial drafting of the Bill—despite the high level of expertise involved in the initial drafting of the Bill, that one managed to sneak through. The amendment would simply change the word “capability” to “capacity”, to be consistent with the rest of the Bill.

I now come to amendments 34 to 47 and new clause 1. As we have discussed, those would replace the concept of “capacity”, which is based on the Mental Capacity Act, with a new concept of “ability”. I think that suggestion is coming from a good place and is made with good intention by the hon. Member for Richmond Park; I thank her for her positive engagement with the Bill. However, based on the oral evidence that we received, particularly from the chief medical officer and many other experts, the suggestion would seem unnecessary given that we already have—as has been discussed at length this afternoon—a very well established piece of legislation that is effective in this regard.

The primary purpose of the Mental Capacity Act is to promote and safeguard decision making within a legal framework. As the CMO and other colleagues have said, issues around mental capacity

“are dealt with every day, in every hospital up and down the country; every doctor and nurse above a certain level of seniority should be able to do that normally.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 31, Q3.]

That view was supported by Yogi Amin, an expert in Court of Protection work, human rights and civil liberties, who told us during the oral evidence sessions:

“It is well understood how capacity assessments are done, and it is ingrained”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 140, Q176.]

[Sean Woodcock]

We all understand the evidence of the chief medical officer and why he and others, including Members here, prefer the use of the Mental Capacity Act. It is understood by doctors and it is used every day.

What this debate is fundamentally about is that assisted dying is not done every day. It is not something doctors are used to. As somebody who has said that she wants the toughest safeguards, it is incumbent on my hon. Friend the Member for Spen Valley to understand that what those of us who have concerns about the Bill are saying is that this is unusual. It is a step into the dark.

The amendment tabled by the hon. Member for Richmond Park is about making sure that the issue is not just about what doctors are used to, but that there is another safeguard to ensure that people are not being exploited. Does my hon. Friend understand that?

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[Kim Leadbeater]

I do. I take my hon. Friend’s comments on board and I will come to address them. As other colleagues have established, it would seem nonsensical to try to introduce a brand new legislative framework rather than use an existing piece of legislation that has stood the test of time. Indeed, Professor Laura Hoyano, emeritus professor of law at the University of Oxford, who has worked in civil liberties, human rights and domestic abuse, said:

“It is interesting that a number of Members of Parliament who are practising physicians pointed out in the debate that they have to evaluate freedom of decision making and absence of coercion in many different medical contexts.”

She talked about the withdrawal of medical treatment, as others have this afternoon, and went on:

“It is considered to be a fundamental human right that lies at the heart of medical law that a patient has personal autonomy to decide what to do with their body and whether or not to accept medical treatment, provided that they have the capacity to do so...Doctors have to make those assessments all the time.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 227, Q289.]

In the light of that evidence, it would seem unnecessary to create a whole new legal framework around the new concept of ability.

However, although I think the Mental Capacity Act is the correct legal framework to use, I strongly agree with palliative care doctor Rachel Clarke when it comes to additional training on assessing capacity for the purposes of this Bill, which relates to the point made by my hon. Friend the Member for Banbury. She strongly encouraged us to give serious consideration to this matter, saying:

“If there is one thing that I would say to the Committee regarding making the Bill as robust, strong and safe as possible, it is: please consider seriously the matter of education and training from day one of medical school onwards.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 71, Q85.]

The CMO also suggested that training on capacity, as has been discussed, may require some slight adjustment. He said:

“There is an absolute expectation within the Act, for example, that the more serious the decision, the greater the level of capacity that someone needs to have...That training should be generic, but may need some adaption.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 30-31, Q3.]

I agree. As I have said, I think one of the best things about the Bill is the opportunity it gives us to develop gold-standard training around end-of-life care, end-of-life conversations and choice for terminally ill people. That should include training in assessing capacity specifically for the purposes of the Bill, for a decision that is clearly of such a high level of consequence and seriousness.

[Daniel Francis]

I absolutely accept what my hon. Friend says about training. I know we have separately discussed places in the Bill where we could replace the word “may” for “must” to make the safeguards stronger. However, I come back to the same points as I made to the Minister. The Mental Capacity Act code of practice, which I presume is what we will be relying on, says:

“If it is practical and appropriate to do so, consult other people for their views about the person’s best interests”.

However, it does not say “must”, and for adults with learning disabilities particularly, that remains a principal concern. Chapter 2 of the code of practice says:

“It is important to do everything practical...to help a person make a decision for themselves before concluding that they lack capacity to do so.”

I know this is not my hon. Friend’s intention, but that is the wording that would lead a doctor to have to help somebody make this decision. My question is: how will we overcome that issue?

[Kim Leadbeater]

That is a point worth making, and something we will look at through the amendments that my hon. Friend has proposed. I am very happy to look at those, as I have already said, but the idea of creating a whole new concept of ability seems wholly unnecessary in the context of a piece of legislation that has stood the test of time for over 20 years.

I come back to training. Although the full details of the training programme that would accompany the Bill cannot be put on the face of the Bill, I have discussed the issue at length with officials in the Department of Health and I have included amendments to that effect. Amendments 186 and 198 specifically state that training must include assessing capacity and assessing whether a person has been coerced or pressured by any other person. Further comprehensive training will be included in regulations set out by the Secretary of State, and the chief medical officer is confident that that is the correct way to proceed.

Furthermore, as has been referred to, there are multiple opportunities within the process to assess capacity by a range of professionals. I have also tabled new clause 8, which would create a duty for the Secretary of State to consult before making regulations relating to training. Within that, there would be a duty to consult not only the Equality and Human Rights Commission, which is important, but persons with expertise in matters relating to whether persons have capacity and whether persons have been coerced.

[Naz Shah]

To go back to the point about multiple opportunities and capacity, my understanding from this morning’s Guardian is that an amendment has been tabled—it was mentioned earlier; I do not know whether others have had sight of it, but I certainly have not—on potentially having a panel instead of a judge. My hon. Friend the Member for Bexleyheath and Crayford has just asked a question, and my hon. Friend the Member for Spen Valley responded by saying that she would come back to it, but my concern is that we are looking at the clause now, and once we have discussed it there will be no going back to it. I am trying to understand at what stage in the process she will come back and fix it. If we are going to address it under clause 9, clause 8 or wherever, how will that impact on clause 1? How will it address the issues that we are debating right now?

[Kim Leadbeater]

At the moment, we are addressing the fitness for purpose of the Mental Capacity Act, but there are other amendments that will take on board some of my hon. Friend’s points, particularly about people with learning disabilities. I am very happy to look at that. I am working to table an amendment before the recess, to give the Committee an opportunity to look at it in great detail. My hon. Friend the Member for Bradford West is right that that would provide another opportunity for assessment of capacity with the involvement of psychiatrists and social workers, who have said that that is their expertise and what they excel in, and who feel that they have a valuable role to play in the process.

[Naz Shah]

At what stage will we know how the amendments that my hon. Friend proposes have an impact on clause 1? If we make amendments later in the Bill, how will that have an impact on the amendments that we have discussed this morning, in particular in relation to capacity?

[Kim Leadbeater]

Clause 1 is very specifically about the Mental Capacity Act, on which we should get a chance to vote this afternoon. Other amendments can be tabled ahead of Report, but the fitness for purpose of the Mental Capacity Act is a concept on which we will get a chance to vote this afternoon. Other things can be added to the Bill that would enhance other aspects, but the point that we have discussed this afternoon is about the fitness for purpose of the Act. There are different views on the Committee, which is understandable. I believe that using the well-established legal framework of the Mental Capacity Act, introducing gold-standard training and consulting experts in assessing capacity will mean that there is no need to develop a whole new framework around the concept of ability, particularly on the points made by my hon. Friend the Member for Penistone and Stocksbridge. I therefore do not support the amendments.

[Sarah Olney]

The hon. Member for Solihull West and Shirley used an arresting phrase this morning: he said that to abandon the Mental Capacity Act would take us “into tiger country”. The concept appeals greatly to me, but what I would say to him and other Committee members is that it is the Bill itself that takes us into tiger country. It is unprecedented, and this is very new territory for legislation in this country. That is the tiger country, right there. If we are going to let those tigers out into the wild, we need to ensure that the British public, and particularly the most vulnerable members of it, have the right protections. That is what the amendment seeks.

There was not a consensus among those who gave oral or written evidence that the Mental Capacity Act is a sufficient safeguard for the purpose proposed in the Bill. I am grateful to the hon. Member for Bexleyheath and Crayford for his speech this morning, which illustrated vividly for all of us how the Mental Capacity Act is used in practice. I particularly thank him for his personal reflection.

Let me reiterate what the amendment seeks. The Bill proposes to judge mental capacity for a decision to request assisted dying in relation to the Mental Capacity Act 2005. There are elements of the Mental Capacity Act that are tried and tested, and should be retained in assessments of capacity in relation to this legislation, but as per the written evidence of the Royal College of Psychiatrists, the Mental Capacity Act is not sufficient for the purposes of assisted dying, because it cannot distinguish between those who suffer from a mental disorder and those who do not. It needs to be adapted for the purposes of the Bill.

My amendment 34 would therefore substitute “capacity” with “ability” and reserve to the Secretary of State the power to define ability for the purposes of the Bill. To me, that is a pragmatic response. The debate in the Committee Room today reflects the lack of consensus among the experts who gave witness. That is why I think the matter is better resolved by those experts giving advice to the Secretary of the State, so the definition of ability can be expertly decided on.

The difference between choosing assisting dying and choosing to end treatment was a big topic of debate both this morning and this afternoon. It goes to the heart of the different approaches that people take towards the Bill. I support the observation from the hon. Member for East Wiltshire that the difference is between dying of an illness itself, or dying of the effects of the approved substance, as laid out in the Bill. To me, that is a substantial and material difference, so our approach to establishing capacity should reflect that.

The hon. Member for Reigate made an important point about the difference between a passive and an active choice. That very much reflects what I am trying to achieve through the amendment, which would allow us to strengthen the safeguards around the assessment of capacity. Given that there was not a consensus, among the experts who gave evidence, on whether the Mental Capacity Act is sufficient for the purpose, the pragmatic step is to allow the amendment to create the conditions under which a stronger safeguard can be adopted if necessary.

Question put, That the amendment be made.

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[The Chair]

For the moment, we will leave it there.

[Kim Leadbeater]

On a point of order, Sir Roger. I am not sure that we have voted on amendment 202.

[The Chair]

We will take it when we get to it. Thank you for raising that point, because this is a learning process for a lot of people. We decide on the amendment that is moved; we will then decide on any further amendments, if any Member wishes to propose them, in the order in which they appear in the Bill. In this case, that is not yet.

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I do not believe that there is some enormous difference between the culture of Canada and that of the United Kingdom, but it is significant that people here currently think that it would be wrong to offer assisted dying to people who are homeless, while 10 years after the law was introduced in Canada, a quarter of people there do. That indicates that the law is itself a teacher, which is one of my great concerns about the Bill: that it encourages people to think that the lives of certain categories of citizen are of less value.

[Kim Leadbeater]

Did the polling ask people’s view on whether terminally ill homeless people should have access to assisted dying, or on whether it should be offered to homeless people just for being homeless? That would seem very strange.

[Danny Kruger]

The hon. Lady might well be right. I totally take that point. I dare say it is people who are homeless. I think the question put was, “Should those who are homeless simply be able to ask for assisted dying?” People in this country say no. In Canada, asked the same question, a quarter of people say yes. The effect of the law has been to institute this principle of assisted dying being an acceptable choice under any circumstances, which is indeed, I am afraid, what happens.

I will end with a powerful quote from Fazilet Hadi, who spoke to us representing disabled people. She said:

“This Bill is not an abstract exercise; it will land in a society that is rife with inequality.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 185, Q242.]

She said that the society the Bill will land in is the thing that needs to change, not the Bill. She thinks we need to change our society before we do anything like introducing assisted dying. I agree.

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[Danny Kruger]

rose—

[Kim Leadbeater]

rose—

[Naz Shah]

I give way to the hon. Gentleman first.

[Naz Shah]

I give way to my hon. Friend.

[Kim Leadbeater]

My hon. Friend has listed certain categories of people, and we will come on to the definition of terminal illness. I am confident that, given the definition of terminal illness in the Bill, some of the groups of people she has talked about will not be included in its scope.

[Naz Shah]

Where does it specify that? I know we are going to debate that subject later, but right now there is nothing that gives me assurance that those people will be excluded. Unless there is an amendment that my hon. Friend the Member for Spen Valley will support, the Bill, as drafted, would still apply to somebody if they decided not to carry on with treatment, or if they decided they did not want to take their insulin or other medication and that would lead to their death. I am happy to give way to my hon. Friend so that she can explain how she is going to deal with that.

[Kim Leadbeater]

I will. Let me read from the Bill. The definition of “terminal illness” under the Bill is that

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

The conditions that my hon. Friend is describing can be reversed by treatment and are not inevitably progressive. We will come to that debate in due course, but that definition is crucial.

[Naz Shah]

I beg to differ on the wording that my hon. Friend just used. It actually makes my point. As it stands, if I were an insulin-dependent diabetic—and I have been so on three occasions, with my children— I could say that if I stopped taking that insulin, I would become terminally ill. In the Bill as it stands, and as it is drafted, I would meet the criteria.

[Kim Leadbeater]

My hon. Friend would not meet the criteria. She might be describing a condition that cannot be reversed, but it is the “inevitably progressive” part that we are talking about. Because it can be treated, it is not an

“inevitably progressive illness, disease or medical condition”.

[The Chair]

Order. A debate about the definition of “terminal illness” will come later in the Bill, and it might help us all if we were to swiftly move forward to that point.

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[Danny Kruger]

I am grateful to my right hon. Friend. I particularly applaud his amendment’s aspiration to ensure that the doctors’ conversations are properly recorded.

[Kim Leadbeater]

Further to the comment from the right hon. Member for North West Hampshire, all of that will obviously be recorded on the patient’s medical records as well. The idea that it is not being recorded is just not correct.

[Danny Kruger]

The decisions will be recorded, but the conversations that the hon. Lady stipulates should take place under the Bill need further recording, in my view, with further evidence of what was discussed in order to ensure that the safeguards have been properly applied. I also point out that for the chief medical officer to effectively carry out the review under clause 34, they must have evidence available, not just a few schedules that have been signed off.

Likewise, I am glad to say that the opportunity remains for a legal appeal, in so far as we still have a judicial process, but I am concerned that the lack of any documentary evidence makes the application difficult for any external party or the Court of Appeal to review. Currently, there is a great paucity of information that the High Court judge considering the application can request. I think it is important that the High Court judge—or, indeed, the panel, if we move to that approach—should have access to a much fuller range of documentation to ensure that the process has been properly followed.