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

Kim Leadbeater Excerpts

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[The Chair]

Thank you. I call Kim Leadbeater.

[Kim Leadbeater (Spen Valley) (Lab)]

Further to those points of order, Ms McVey. I take on board people’s comments. There’s no two ways about it; this is a considerable amount of work for members of the Bill Committee to undertake. As has been alluded to, there are a wide range of amendments being proposed. The job of the Committee is to take evidence, look at those amendments, discuss and debate them, and then vote accordingly. That is the process that we are all here to undertake.

[The Chair]

Thank you. Let us start.

Clause 1

Assisted dying

[Kim Leadbeater]

I beg to move amendment 178, in clause 1, page 1, line 3, after “person” insert “in England or Wales”.

This amendment provides that only persons in England or Wales may be provided with assistance in accordance with the Bill.

[The Chair]

With this it will be convenient to discuss the following:

Amendment 179, in clause 1, page 1, line 13, after “provided” insert “in England or Wales”.

This amendment limits the assistance that may be provided in accordance with the Bill to assistance in England or Wales.

Amendment 180, in clause 1, page 1, line 20, at end insert—

“(3) The steps to be taken under sections 5, 7, 8 and 13 must be taken—

(a) when the terminally ill person is in England or Wales, and

(b) in the case of the steps under sections 7 and 8, by persons in England or Wales.”

This amendment provides that steps under clauses 5, 7, 8 and 13 must be taken by and in respect of persons in England or Wales.

Amendment 182, in clause 4, page 2, line 21, after “person” insert “in England or Wales”.

This amendment limits subsection (3) to cases where the person is in England or Wales.

Amendment 193, in clause 7, page 4, line 8, at end insert—

“(ca) is in England and Wales,”.

This amendment, which is consequential on Amendment 178, provides that the coordinating doctor must ascertain whether, in their opinion, the person who made the first declaration is in England and Wales.

[Kim Leadbeater]

It is a great pleasure to serve under your chairship, Ms McVey, in this very important stage in the consideration and detailed scrutiny of the Bill.

We are discussing assisted dying for terminally ill adults who have a clear, settled and informed wish to end their own life, and who have not been subjected to coercion or pressure from anybody else to do so. These are very serious matters and deserve serious consideration, which is why I was determined that this Bill should have an unprecedented level of scrutiny. We have heard from a range of over 50 witnesses with differing views on the Bill and have received written evidence from many, many more.

I am grateful to everyone who has contributed in such a thoughtful and constructive way. It has been widely remarked—and I wholeheartedly agree—that the Second Reading debate on 29 November last year, when the House approved the principle of the Bill by a majority of 55, showed Parliament at its best. I hope and believe that this Committee, as it goes through the Bill line by line, will do so in the same considered, respectful and measured manner.

[Danny Kruger]

I completely endorse that last point made by the hon. Lady. Does she remember how many Members on Second Reading—including, I think, herself—made reference to the judicial stage of the process and specifically to the High Court judge? Over 60 colleagues have stated on the record that they voted for the Bill on Second Reading because of that safeguard. Does she acknowledge that point?

[Kim Leadbeater]

I do acknowledge that point—absolutely, as I have acknowledged, the role of a High Court judge is really important in this process. That role will remain with the amendment I have tabled. It will also take account of the very clear evidence we received during the oral evidence sessions from psychiatrists, social workers and other professionals who feel that they have an important role to play in this process. Indeed, I heard the hon. Gentleman say he agreed with that on the radio this morning. It is very important that we hear from those experts. There is no point in having witnesses if we do not listen to what they have to say.

[The Chair]

Order. I remind Members that they should keep to the amendments being debated.

[Kim Leadbeater]

Thank you, Ms McVey.

I hope and believe that the Committee will take the same considered, respectful approach that we have taken previously. We have been asked by the House to look at where the Bill can be improved and to amend it, so that Parliament can be presented with a piece of legislation that is robust and workable in order to meet the objectives it is designed to achieve. Most—if not all—the amendments tabled in my name, have been drafted with the help of parliamentary counsel and officials in both the Department of Health and Social Care and the Ministry of Justice. The Government are committed to making the Bill workable and operable, while maintaining a position of neutrality.

I am grateful for the tremendous hard work that has gone into this to make a well-drafted Bill even better. I know the Ministers on the Committee, although remaining neutral, will be here to explain, where necessary, why some drafting amendments were needed to meet their duty to the statute book. There is an old adage that says too many cooks spoil the broth. That may not exactly be parliamentary language, but we will have to bear it in mind as we go along. Over 300 amendments have been tabled—most of them with the intention of improving and strengthening the Bill. I thank all MPs, whether members of the Committee or not, for the time and effort they have put in.

We have a responsibility to maintain the integrity and coherence of the Bill as a whole, so it is evident that we will not be able to accept all amendments. Indeed, we may find ourselves rejecting amendments that sound entirely reasonable in themselves and that undoubtedly come from a good place, but that are perhaps better addressed elsewhere in the drafting. Others might have unintended consequences or create a degree of ambiguity or uncertainty that could undermine the legal authority of the legislation. That might be very good for the pockets of lawyers, but it does not make for good law.

[The Chair]

Order. I remind the Member that although a brief introduction is acceptable, we should be talking to the amendments in this group.

[Kim Leadbeater]

Absolutely, Ms McVey—thank you for allowing me to make some introductory comments.

Amendments 178 to 180, 182 and 193 simply clarify that only persons in England and Wales may be provided with assistance in accordance with the Act, and only medical practitioners in England and Wales can carry out the required roles at each stage of the process. Hopefully, this is a nice straightforward one to get us started.

[The Minister for Care (Stephen Kinnock)]

I thank my hon. Friend the Member for Spen Valley for her introductory comments. The Government will continue to remain neutral on the Bill and do not hold a position on assisted dying. I want to make it clear that I, along with the Minister of State, Ministry of Justice, my hon. and learned Friend the Member for Finchley and Golders Green, are speaking in Committee not as Members of Parliament, but as Government Ministers responsible for ensuring that the Bill, if passed, is effective, legally robust and workable.

To that end, we have been working closely with the hon. Member for Spen Valley and, where changes have been mutually agreed on by herself and the Government, we will offer a technical, factual explanation for the amendments. Therefore, I will not be offering up a Government view on the merits of any proposed changes put forward by other Members, but I will make brief remarks on an amendment’s legal and practical impact to assist Members in undertaking line-by-line scrutiny.

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[Sarah Olney]

Yes, that is exactly what I am aiming to do. The hon. Member makes an excellent point. There is a wide variety of views on this, but in actual fact, much as I do not wish to question Professor Sir Chris Whitty, and I acknowledge his seniority as the chief medical officer, he was very much the outlier on this. Everybody else who gave evidence on the sufficiency of the Mental Capacity Act to determine someone’s capability to make this decision for themselves cast doubt on the idea that the Mental Capacity Act was the right way of doing it.

[Kim Leadbeater]

That is not quite accurate. I think we did have other witnesses who absolutely said that they had confidence in the Mental Capacity Act, and I will speak about them in this debate.

[Sarah Olney]

I look forward to the hon. Lady’s further comments, but as I said, the psychiatrists were very clear that they did not believe that this was a sufficient safeguard, and we should acknowledge that.

I was unable to put my question to Alex Ruck Keene KC during the oral evidence session, but he kindly agreed to give further evidence in writing in response to a letter I sent to him later that day. That exchange of letters has been published as written evidence. It was his position that, in actual fact, Professor Sir Chris Whitty misinterpreted the Mental Capacity Act when he gave evidence. There is no such requirement in the Mental Capacity Act that states that the more serious the decision, the greater the level of capacity that someone needs to have. Mr Ruck Keene’s view is that that was the common law prior to the Mental Capacity Act coming into force, whereas in actual fact the Mental Capacity Act does not require that the more serious the decision, the more capacity someone needs to be judged to have.

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[Dr Shastri-Hurst]

My hon. Friend makes a valid point. I have concerns about public confidence in the Bill without that additional safeguard, as this is such a consequential decision, but of course any advance directive would be predicated on having gone through those two stages first before capacity is lost. I feel that on this occasion additional tightening is necessary so that the public can be confident that a robust process has been gone through.

The MCA is a tried and tested piece of legislation used by practitioners up and down the country. The hon. Member for Stroud uses it every day in his practice; I have to say that I did not, but I was not consenting patients for surgery every day. Every time I did so, however, I had those conversations. Capacity lies on a spectrum: if I am doing major abdominal surgery, the level of capacity required to make a decision will be much greater than if I am removing a small bump or lump on an arm.

As well as having been tried and tested by medical practitioners, the MCA has been tested in the courts, as the hon. Member for Penistone and Stocksbridge said. It has been right up to the highest court in this land, it has been robustly tested and it has been found to be good legislation. The risk we now face is that it will be replaced not only with a new legal concept, but with an entirely different process for assessing capacity in this setting. Although there may be good intentions to improve the system, that will only add to the folly of it and overcomplicate the issue.

[Kim Leadbeater]

I am sorry that it has taken me a while to find the relevant provision of the Bill. The discussion on the advance directive is a really interesting one, and I am glad that we are having it. Is the hon. Member reassured that clause 18(4) is very clear that on the day that assistance is provided to a patient, a doctor has to assess once again their capacity to make the decision to end their own life, check again that there is a clear, settled and informed wish to end their own life, and indeed check everything again on the day, including capacity? I believe that that will negate the issue around the advance directive.

[Dr Shastri-Hurst]

The hon. Member makes a reasonable point. I agree with her on many issues, but on this issue I have some reservations. Clause 18(4) says:

“The coordinating doctor must be satisfied, at the time the approved substance is provided, that the person to whom it is provided…has capacity…has a clear, settled and informed wish to end their own life”.

Of course, under the wording of section 26(1) of the Mental Capacity Act, that decision can be made at an earlier time and deemed to have currency, once capacity has been lost, for its enactment at a later date. I think that there could be a minor tightening of the wording or reassurances from Government to address that, but it is an important point to raise and air.

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[Dr Shastri-Hurst]

That is one of the additional safeguards in the Bill. This Bill has more in-built safeguards than any similar piece of legislation across the world. I think the hon. Gentleman makes a valid point: when a doctor has concerns about somebody’s mental state, they can escalate the case and seek further, specialist opinion.

[Kim Leadbeater]

Will the hon. Gentleman give way?

[Dr Shastri-Hurst]

I will make some progress, if I may, because I think I have indulged your patience for far too long, Ms McVey.

I am cautious about introducing this new test. I may not have persuaded everyone, but I have set out my reasons. We risk making the system overcomplicated. We would move away from the well-established mechanism under the Mental Capacity Act and into tiger country, with untried and untested systems that the courts have not considered, which will inevitably lead to challenge. There is no need to do that, because we already have robust mechanisms in place and doing so will merely lead to ambiguity and potential complications.

This is not me reaching this conclusion in isolation. Of course, there will always be voices on different sides of the debate, and we can frame the evidence we have heard to favour one set of arguments over another. However, I am significantly persuaded by the chief medical officer, given his wide experience as not just a clinician but a public policymaker. In his evidence to the Committee on 28 January, he said:

“It is not clear to me what problem people are trying to solve by doing that,”

—he means moving away from the Mental Capacity Act—

“given that the Mental Capacity Act clearly makes the point that the more severe the decision, the greater the degree of capacity that has to be assumed before people can actually take that decision.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 37, Q14.]

It is that foundation that we are building on, and it is central to how these things operate in practice.

Although I understand the position of the hon. Member for Richmond Park, and I have a degree of sympathy with those who support the amendments, I invite them to reflect, in the time we have left for this debate, on whether the amendments achieve their stated aim. Do they make the Bill better or do they make it more complicated and convoluted? I say that they make it more convoluted and that, despite the best of intentions, they should not be supported.

[Daniel Francis]

My hon. Friend the Member for Penistone and Stocksbridge knows I am an ally on many of these issues, but I will humbly disagree with her on some matters. I am not a lawyer or a doctor, but like many people here I speak from lived experience. I speak as the parent of a learning-disabled child, so I see the kinds of decisions that have to be made day to day, and the kinds of arguments and conversations that have to be had with people who presume that my child has more or less capacity than she has. Believe me, that is a constant, daily battle for me and my wife.

My daughter has 12 words and a severe sight impairment, which makes it very difficult for her to make some of her decisions, as well as other complexities—predominantly her cerebral palsy, which caused a brain injury at birth. Therefore, in my own way, although I am not a lawyer or a doctor, I have become a bit of an expert on some of the capacity issues that people encounter day by day. This morning, as I do most mornings, I read to her the three choices for her breakfast. I give her a bit of time to think about them and then I repeat them. We get yes or no to those three choices, and that is the choice she makes. Because of her severe sight impairment, when I put those three options in front of her, I have to lift them up in front of my face so that she can see them; if I put them much lower down, she would not be able to see them and make a choice. She would be able to make the choice through pointing if it was within a certain range.

I have doctors calling my wife and me all the time, asking to have a conversation with my daughter, despite their having read the notes saying that she is an 11-year-old with 12 words and a severe sight impairment. I therefore query—I will refer to some of the oral evidence in a moment—how well some aspects of the Mental Capacity Act are currently being carried out. Equally, I deal with people who suggest that she has a greater level of capacity than she does.

I accept—I have had this conversation with the hon. Member for Spen Valley on a number of occasions—that this legislation would not be applicable to my daughter. However, we heard in evidence from Mencap that the vast majority of people with learning disabilities in this country are not in the same position. They are living their day-to-day lives, living in supported accommodation and making the kinds of decision we have discussed in this debate, such as buying coffee and going to the bank.

As a result of my 20 years as a councillor, and in the last 11 years since our children were born, I have become involved with a number of local disability charities, and I know the decisions that people make when their child is at that transition age. They are trying to understand the complexity of taking a power of attorney for a child, as well as other decision-making issues. I spend a lot of time with parents who do not put those measures in place, because they do not understand the complexity in terms of age. We could therefore have a young adult relying on doctors who do not know them and on a judge—I have not seen an amendment on that issue, so I am still talking about a judge—to make a decision about capacity.

[Kim Leadbeater]

I do not particularly have a question to ask my hon. Friend, but I want to pay tribute to him for engaging so positively with the scrutiny of the Bill and for the very personal experience he has shared with the Committee. I reassure him that I will do everything I can to work with him, as I have so far through this process, because his fears are real, and I hear them. We have a job to do through the Bill to solve the problems that exist for people who are dying, but we do not want to create other problems. I am happy to continue to work with him to ensure that we address as much of that as we can through the Committee.

[Daniel Francis]

I thank the Member in charge for her comments. That is the conversation we had when she invited me to join the Committee, and we will continue to have conversations as amendments come forward.

My concern is about some aspects of the Mental Capacity Act, which was not written for these scenarios, and the hon. Member for Richmond Park talked in particular about the statutory principles in it. I am not an expert on these issues, and my hon. Friend the Member for Stroud behind me is more of an expert on some of them. However, there is no obligation in the code of practice under the Act to consult carers involved in a person’s life. The code says:

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

Therefore, given the way the Act and the code of practice are worded, there is no obligation in the scenarios I am discussing.

There is another issue I was going to raise before I took that intervention. Mencap does considerable hard work. At my local branch, there are many people whose parents are in their 70s and 80s and have cared for their child all their life. I am not being rude, but their child, who is in their 40s or 50s, does feel like a burden to their parents. They know the obligation their parents have to care for them for their whole life. I ask Members to consider what the Mental Capacity Act says: those adults are at a level of capacity to make decisions, but they have been supported in those decisions all their lives and do not—

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“I really liked what you said yesterday; we need gold standard training. The thought yesterday about what happens with capacity made me think straight away about cases in the last few months where we, as a palliative care team, thought that someone had capacity, and the other team did not.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 194, Q254.]

[Kim Leadbeater]

My hon. Friend cites some interesting observations from the oral evidence, and I welcome his doing so. I draw his attention to my amendments 186 and 198, which look at the training. This is something I feel passionately about. If the Bill were to pass, having gold standard training would be vital, as I said during that sitting. I will do whatever I can to embed that in the Bill, and I will certainly consider what that will look like in the instances that we are discussing.

[Daniel Francis]

I welcome that commitment and look forward to that discussion in due course.

Dr Hussain went on to say:

“Ultimately, I do not think the Mental Capacity Act and safeguarding training are fit for purpose.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 29 January 2025; c. 199, Q260.]

Professor Owen said:

“That conveys questionable confidence in the consent processes, of which mental capacity is part, in relation to the decision to end one’s life. It is significant evidence about the confidence that is out there among experienced practitioners.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 228, Q290.]

Dr Price said:

“I…refer back to Professor Gareth Owen’s oral submission, thinking about the purpose that the Mental Capacity Act was drawn up for and the fact that decisions about the ending of life were not one of the originally designed functions of it. We would need to think carefully about how that would then translate into a decision that was specifically about the capacity to end one’s life.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 268, Q349.]

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[Danny Kruger]

The hon. Gentleman’s intervention helps me to explain my point more clearly, which is that the new clause tabled by the hon. Member for Richmond Park builds on the terms of the Mental Capacity Act. It recognises the value of the terms, which have been well established in case law through the MCA—the ability to understand, use and weigh the relevant information.

The key difference is the word “fully”. The case law around the MCA allows for somebody to be deemed capacitous even though their judgment might be impaired. What is proposed in the new clause is the closing of that lacuna, so that it would not be possible for someone to get an assisted death if their judgment was impaired. That is the key difference.

It is also important to exclude the MCA because of the thicket of complications that it would entail. We have heard about the importance of simplification. A much simpler and better way to do the entirely novel thing that we are proposing, which is to authorise assisted suicide by the state, is to have a new definition.

[Kim Leadbeater]

Will the hon. Gentleman give way?

[Danny Kruger]

The hon. Lady does not like my terminology.

[Kim Leadbeater]

I do struggle with that terminology. This is not assisted suicide by the state. The state is not involved. It is the person making an autonomous decision based on their choice at the end of life. I will say on the record that the term “suicide” is not accurate for the cases we are talking about. The people we are dealing with are not suicidal. They very much want to live; they do not want to die, but they are dying. It is important that we have that on the record.

[Danny Kruger]

I think it is totally valid for us to have this argument about terminology periodically. I will repeat the point that we have made before, which is that we are actually amending the Suicide Act 1961—or rather, we are disapplying that Act—in the process set out in the hon. Lady’s Bill. There is no getting away from the fact that we are talking about assisting suicide. I am afraid that I will continue to use the term, and I hope the hon. Lady will forgive me for that.

I am arguing that the MCA is a complicating factor in the process that is being proposed for the Bill; it makes things much more difficult and complicated. The point has already been made—the hon. Member for Richmond Park put it very well—that, in the case for the MCA, a lot of weight is being put on the evidence from Sir Chris Whitty, suggesting that the MCA works very well. I point out that Sir Chris made a significant mistake in his evidence, when he said that

“the more serious the decision, the greater the level of capacity that someone needs to have.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 30, Q3.]

There is no such requirement in the Mental Capacity Act. Of course, we would hope that doctors would take a serious decision more seriously than a trivial one, but there is no such requirement. I cite Alex Ruck Keene KC, who wrote to the hon. Member for Richmond Park after his evidence session; with the greatest of respect to Chris Whitty, the fact that he got that wrong does not inspire confidence in his comments that the Mental Capacity Act is well understood by doctors throughout the country. I very much echo that. We have had so much evidence on how the Mental Capacity Act does not work well in practice that I think it was regrettable for the chief medical to have made the Panglossian observation that every doctor interprets it in exactly the same way and it works perfectly everywhere.

The Mental Capacity Act does not detect coercion. We will discuss coercion more in subsequent debates, but that Act is certainly not the safeguard against it. Professor House made some comments to us about Down’s syndrome and about diagnostic overshadowing. That is a very important concept. I am afraid to say that it is frequently the case, regarding people with severe disabilities, that capacity—or, indeed, incapacity—is not correctly observed because the medical professional will not see beyond the more presenting of their conditions. Observing capacity in someone who does have disabilities is often mistaken; it is harder than it is regarding other people.

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[Danny Kruger]

The simple answer is yes, I do. I think it is a causatively different decision. In fact, this whole Bill entails causative differences between those decisions. I will come to that point more in a moment.

Professor Owen made an important point to us regarding capacity. He said:

“You might be talking about a kind of cognitive impairment that has not reached the threshold for a diagnosis of dementia; you might be talking about a kind of mood problem or an anxiety problem that is sub-clinical; or you might be talking about a level of intelligence that is not clinically a learning disability.”

He talked about

“pressure within a family, let us say, which is often not malign in its intentions, but it exists.”

and about situations

“where there is an impairment and also an interpersonal pressure”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 234, Q297.]

Although we are not talking at this point explicitly about coercion and family pressure, the issues around capacity and coercion are nevertheless intertwined, and it is often very difficult for doctors to determine what is really going on. Again, the challenges around capacity are intense.

The point has been made by hon. Members that under clause 9(3)(b), if the second doctor in the process is in doubt about capacity, they “may” refer the person to a psychiatrist, but the clause in fact refers to “a registered medical practitioner” who “has experience of” the assessment of capacity—so not a psychiatrist, but just someone who has experience, whatever that means, of the assessment of capacity. It is not totally obvious what that means. Amendment 365 has been tabled overnight by the hon. Member for Bath (Wera Hobhouse) which would mean that both the first and second doctor, and indeed the court, if we are allowed to have a court process, “must”—not “may”— refer the person to a psychiatrist. That is not just if they are concerned about capacity, by the way. The court, or whoever it is, must conclude that there is no

“impairment of judgment arising from a mental disorder or other condition”.

I very much welcome that amendment and I hope that we will pass that in due course.

[Kim Leadbeater]

On that point about clause 9(3)(b), as I think was mentioned earlier, an amendment has been tabled by the hon. Member for St Albans (Daisy Cooper)—an amendment that I would support and I hope the Committee will—that would indeed turn the “may” to a “must”, so that there has to be a referral to a psychiatrist if there is any doubt from either of those doctors.

[Danny Kruger]

That is excellent news. For the first time so far in the course of this debate, we have a strengthening of the Bill from the hon. Member. That is great news—we can chalk that up as a victory, and as good sense breaking out. I am grateful for that. Let’s see what more we can achieve.

The point that I want to make is that we are in the foothills of understanding the effects of depression, cognitive impairment and social pressure on the decision to end life. That is a point made strongly by a series of witnesses to us in both oral and written evidence: we are still very much in the early stages of understanding how capacity interacts with mental illness, disability and coercion. Then, into the mists of vagueness, we are proposing to insert this single clunking, clumsy question: “Is there evidence of incapacity?” I strongly suggest that the abuse of the Mental Capacity Act that we are seeing here is not a way of simplifying the process of ensuring that there are a small number of strong safeguards; it is a great complication of the process and introduces more complexity, as we see from the many additional things that clinicians should consider. That is in direct contradiction to the principle of the Mental Capacity Act, which simply asks the question: “Is there capacity?”

The point has been made that there is more to the Mental Capacity Act than simply the question of capacity. There are concepts of best interests and supporting decision making. As the hon. Member for Penistone and Stocksbridge suggested, it is a cumulative process. The Mental Capacity Act entails not only the question of capacity but the consideration of best interests and whether we are supporting the decision making of an individual. I am not sure how those terms apply in a situation of assisted dying. It is not similar or comparable to the sorts of decisions that the MCA is intended to apply to.