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

Debate between Daniel Francis and Kim Leadbeater

Committee stage
Tuesday 25th March 2025 Public Bill Committees

[Kim Leadbeater]

I will speak to my new clause 40 and my amendment 546. The purpose of new clause 40 is to establish a requirement for regular reports on the implementation of the Act until all its provisions are fully implemented. This will ensure continuous oversight and transparency regarding the progress of the Act’s implementation.

The new clause will mandate the Secretary of State to prepare, publish and lay before Parliament a report on the implementation and progress of the Act as soon as reasonably practicable after each reporting period. The reports must include the progress made on implementing the Act during the reporting period, and the Secretary of State’s plans for implementing the Act in future periods, including an expected timetable for further implementation. The first report must be issued one year after the Act is passed, and subsequent reports are due every six months. The sixth and final report marks the conclusion of the reporting period.

The new clause is linked to amendment 546, which will ensure that new clause 40 will be brought into force immediately upon the passing of the Bill, making the reporting requirements active right from the start. This provision is crucial for maintaining accountability and for ensuring that Parliament is regularly updated on the progress of the Act’s implementation and that any necessary adjustments or future plans are communicated effectively. It provides a structured timeline to track the implementation of the Act until all provisions are fully operational.

[Daniel Francis]

I wish to speak to my new clause 28, which was suggested by Marie Curie, the UK’s leading end-of-life charity. The new clause is more substantive than my two amendments in the previous group. It would require an additional assessment within 12 months of the Bill being passed, with the Secretary of State required to undertake an assessment of

“the extent to which the Act is on course to meet its aim of allowing adults who are terminally ill, subject to safeguards and protections, to request and be provided with assistance to end their own lives”.

Crucially, the assessment would incorporate an assessment of the current state of health and care services to persons with palliative and end-of-life care needs, and the implications of the Act for those services, including for the quality and distribution of palliative and end-of-life care services. The new clause seeks to mirror the requirement in clause 35 for an assessment after five years of the Bill passing, only within 12 months of the Bill receiving Royal Assent, in order to provide a benchmark against which the later assessment can be measured.

There has been much discussion about the relationship between the Bill and palliative and end-of-life care services. Above all, the intention behind this new clause is to ensure that, outside the proceedings of the Committee and the progress of the Bill, that relationship is properly and thoughtfully considered by Government. We have heard a range of expert evidence throughout the Committee that, despite the very high quality of palliative and end-of-life care in this country and the phenomenal efforts of the clinicians and organisations delivering it, access to that vital care is all too often inequitable and subject to a postcode lottery.

As Marie Curie stated in its written evidence, if the fundamental aim of the Bill is to offer terminally ill people choice at the end of life,

“genuine choice…cannot exist unless dying people are able to choose to receive high quality palliative and end of life care”.

The sad reality is that in too many cases today people are not able to make that choice. There will most likely be consensus among us that action is needed to fix end-of-life care to ensure that all dying people can have choice and dignity, even if we disagree on whether that is most appropriately achieved on the face of the Bill or through other mechanisms.

There has also been a great deal of debate and discussion about what the impact of introducing assisted dying might be on palliative care services and reference to what might have happened in other jurisdictions. We should not leave this to chance and fool ourselves that improved access to palliative and end-of-life care would be an inevitability as a result of the debate or level of public interest in the Bill. By requiring an immediate assessment of the state of health and care services available to persons with palliative and end-of-life care needs through new clause 28, we can create a framework for accountability within this legislation and a firmer basis on which future policy and spending decisions on palliative care can be made.

It may be useful to recall that we have not had a national strategy for palliative and end-of-life care since 2008. While I appreciate that there are major policy milestones approaching, such as the 10-year health plan, that could help to address that gap, my hope is that an assessment of the quality and availability of palliative and end-of-life care services undertaken as part of the Bill can sit helpfully alongside other plans and strategies.

When introducing the Bill on Second Reading, my hon. Friend the Member for Spen Valley chose to highlight that she had

“included in the Bill a requirement for the Secretary of State to report to the House on the availability, quality and distribution of palliative care.”—[Official Report, 29 November 2024; Vol. 757, c. 1013.]

At this point, the Bill requires such an assessment only after five years. I hope that she and other hon. Members will agree that it would be beneficial to support this new clause so that such an assessment may be undertaken within 12 months, in support of the ambition of seeing improvements in palliative and end-of-life care.

--- Later in debate ---

[Stephen Kinnock]

As drafted, clause 36 sets out individuals who are disqualified from acting as a witness or proxy. Amendment 454 would add to that list and exclude anyone from acting as a witness or proxy who would not themselves have capacity to request to end to their own life under the Bill. This would require there to be an assessment of the capacity of potential witnesses and proxies. There is no corresponding obligation placed on medical practitioners in the Bill to assess the capacity of potential witnesses and proxies, so it is not clear how a person would request, and be provided with, the required capacity assessment.

[Kim Leadbeater]

It is right that there are some exclusions for witnesses and proxies, as set out in the Bill, but although I have no doubt that amendment 454 comes from a good place, it seems both excessive and impractical to conduct a capacity assessment on witnesses and proxies. They are not the patient who is seeking assistance under the Bill, and the role they have is functional and will be overseen by the co-ordinating doctor. The panel can also ask to hear from them if they wish. As such, I cannot support the amendment.

[Daniel Francis]

I wish to press the amendment to a vote.

Question put, That the amendment be made.

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

Debate between Daniel Francis and Kim Leadbeater

Committee stage
Tuesday 18th March 2025 Public Bill Committees

[Kim Leadbeater]

I repeat what I said earlier about what will happen to the patient if they choose to cancel: their care will continue. From a medical practitioner perspective, it is inconceivable that those patients would be abandoned, as the hon. Member for East Wiltshire is suggesting. That would not happen.

I understand that cancellation of the second declaration does not need to be included in clause 14(4) because of when in the process it would happen. The first declaration comes much earlier, so clauses 7 to 9 would be applicable; the second declaration comes further down the process, so does not need to be included. However, I am happy to look at that in further detail and come back to the hon. Member on that, if necessary.

Amendment 375 agreed to.

Amendment made: 376, in clause 14, page 10, line 12, after “doctor” insert “and the Commissioner”.—(Kim Leadbeater.)

This amendment requires a practitioner other than the coordinating doctor to notify the Commissioner (as well as the coordinating doctor) of a cancellation of a first or second declaration.

Clause 14, as amended, ordered to stand part of the Bill.

Clause 15

Signing by proxy

[Daniel Francis (Bexleyheath and Crayford) (Lab)]

I beg to move amendment 321, in clause 15, page 10, line 33, at end insert—

“(d) the reason why the person was unable to sign their name.”

--- Later in debate ---

[Kim Leadbeater]

My hon. Friend is making a really sensible point and a fair argument, and I am very happy to support the amendment.

[Daniel Francis]

I welcome my hon. Friend’s acceptance of the amendment, and I think she sees the point behind it. It was meant not to be awkward—I do not think I have been at all awkward during this process—but simply to state that, if there were concerns later, the reason why the proxy was required should be there in a transparent way. I commend amendment 321 to the Committee.

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

Debate between Daniel Francis and Kim Leadbeater

Committee stage
Wednesday 12th March 2025 Public Bill Committees

[Daniel Francis]

I thank my hon. Friend for that statistic, which I was not aware of. It relates back to concerns that I have had through the process, particularly on learning disabilities and how a family member finds out during the process what processes would be open to them. In my opinion, it is unclear how the proposed panel fits into our legal system. Again, there are all kinds of quasi-judicial panels that do fit into our legal system, and they have an appeal process, of course. They would normally see two parties in a case. I hear what has been said this morning about Spain. It was put to us in oral evidence from a supporter of the Bill that we should look at that part of the Spanish model about having both sides of the process, although I accept that Spain has a very different legal system from the United Kingdom.

[Kim Leadbeater]

I am interested in exploring the characterisation of the two sides referred to, because this is not about two sides. This is about an individual patient with a terminal illness. I am just interested in how we can explore that a little further.

[Daniel Francis]

I hear that. As my hon. Friend knows, yesterday when there was an amendment on individual autonomy, I voted the same way that she did. But I will put the scenarios that I put in that debate yesterday when I came to my decision. The scenario that I have always considered is: what if the person with a learning disability in their 40s or 50s says, “I want to make the decision to relieve the burden on my parent in their 70s or 80s”, and the parent in their 70s or 80s is not involved in the process, but finds out about the process and there is no way they can intervene in the process? I hear what was said about JR, but there is no way, as is laid out in the Bill, that they can then intervene in the process and say, “There has been a mental capacity assessment, but we think that, given there is a borderline level of capacity, there may have been a position where a doctor has had to, under the Act, assist that decision to be made.” What would be the legal process for the parents in that case? These are the scenarios. As Members know, I am not somebody who opposes the principles of the legislation, but these are the scenarios that have brought me to this place.

[Kim Leadbeater]

The quick answer is that there would be an injunction. I hope my hon. Friend will also be reassured that the panel is coming towards the end of this very long process. In the situation he describes, the patient would have gone through all the other stages with the doctor. I imagine in that situation, in a psychiatric referral, the doctor would have said, “Would you consider speaking to your next of kin?” There are a lot of other stages prior to getting to this point, which I hope provides some reassurance.

[Daniel Francis]

I hear that. As my hon. Friend knows, I supported amendment 6, as she did, and other amendments that strengthen the Bill in that way. I accept the right to autonomy. The hon. Member for Harrogate and Knaresborough gave the example of an appeal in Spain, but I do not think the fact that a religious group was funding the appeal in one case is an excuse for taking that right away, because there will be other people in Spain who have genuine concerns and want to go through the appeal process.

Terminally Ill Adults (End of Life) Bill (Twenty First sitting)

Debate between Daniel Francis and Kim Leadbeater

Committee stage
Tuesday 11th March 2025 Public Bill Committees

[Kim Leadbeater]

I think I have responded to the hon. Member for Broxtowe on amendment 407 by saying that the concern will potentially be covered by my new clause 21. On amendment 410, it is also my view that, whether it is the High Court or the panel or whoever we end up having over the course of this Committee, that third layer of scrutiny and safeguarding should be able to hear from other people, not just the patient and the doctor, so I would not support that amendment.

[Daniel Francis]

I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Amendment proposed: 410, in clause 12, page 8, line 27, leave out subsection (6).—(Juliet Campbell.)

The amendment would remove the ability of the court to hear from and question any person other than the person who made the application for the declaration and the assessing doctors.

Question put, That the amendment be made.

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

Debate between Daniel Francis and Kim Leadbeater

Committee stage
Wednesday 5th March 2025 Public Bill Committees

[Kim Leadbeater]

I will do the easy bits first. As the Minister said, amendment 370 in my name is a drafting change to the definition of a psychiatrist, which is obviously very important. These useful amendments have enabled us to have this discussion, and they all come from a good place in trying to enhance safeguarding within the Bill.

On organ donation, my sister-in-law has had two kidney transplants. On neither occasion, to my understanding, did a psychiatrist speak to either her or the organ donor, who in one instance was her brother—my sister-in-law would be very upset that I have mentioned her in Parliament. My understanding of the law is that someone may be referred to a mental health specialist. I am happy to be corrected if that is not the case, but I do not think a consultation with a psychiatrist is compulsory.

As I said to my hon. Friend the Member for Stroud, it is absolutely right that we support amendment 6. From the start, I have been clear that we should move from “may” to “must” in referring to a psychiatrist where either doctor has any doubt. That is a sensible approach, and it covers most of today’s discussion.

However, introducing a whole new system that would almost sit alongside the Bill, and that would change the process, is unnecessary. Those are my conclusions, based on what has been another very interesting discussion.

[Daniel Francis]

I will not come back on anything but, obviously, I will press some of these amendments in due course.

I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Amendment proposed: 294, in clause 7, page 4, line 5, after “doctor” insert

“based on provided evidence that”.—(Daniel Francis.)

This amendment would require that the doctor bases their assessment on provided evidence.

Question put, That the amendment be made.

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

Debate between Daniel Francis and Kim Leadbeater

Wednesday 5th March 2025 Public Bill Committees

[Kim Leadbeater]

I will do the easy bits first. As the Minister said, amendment 370 in my name is a drafting change to the definition of a psychiatrist, which is obviously very important. These useful amendments have enabled us to have this discussion, and they all come from a good place in trying to enhance safeguarding within the Bill.

On organ donation, my sister-in-law has had two kidney transplants. On neither occasion, to my understanding, did a psychiatrist speak to either her or the organ donor, who in one instance was her brother—my sister-in-law would be very upset that I have mentioned her in Parliament. My understanding of the law is that someone may be referred to a mental health specialist. I am happy to be corrected if that is not the case, but I do not think a consultation with a psychiatrist is compulsory.

As I said to my hon. Friend the Member for Stroud, it is absolutely right that we support amendment 6. From the start, I have been clear that we should move from “may” to “must” in referring to a psychiatrist where either doctor has any doubt. That is a sensible approach, and it covers most of today’s discussion.

However, introducing a whole new system that would almost sit alongside the Bill, and that would change the process, is unnecessary. Those are my conclusions, based on what has been another very interesting discussion.

[Daniel Francis]

I will not come back on anything but, obviously, I will press some of these amendments in due course.

I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

Amendment proposed: 294, in clause 7, page 4, line 5, after “doctor” insert

“based on provided evidence that”.—(Daniel Francis.)

This amendment would require that the doctor bases their assessment on provided evidence.

Question put, That the amendment be made.

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

Debate between Daniel Francis and Kim Leadbeater

Committee stage
Wednesday 26th February 2025 Public Bill Committees

[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.

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

Debate between Daniel Francis and Kim Leadbeater

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Daniel Francis]

I will return to that. I understand what amendment 11 seeks to do, but I think we should have a hybrid, because I do not think either amendment would completely achieve what we want. I will seek the Minister’s advice in due course. I understand the legal advice to my hon. Friend the Member for Spen Valley on this matter, and I understand that all the amendments have been tabled in good faith, but I am concerned about the loopholes that could remain.

We heard on Second Reading that assisted dying will not be available to disabled people, but let us imagine an individual who does not consider themselves to be disabled. If they were diagnosed with cancer tomorrow, our current legislation states that they would be disabled from the point of diagnosis. They could live with that cancer and receive treatment for a considerable time, while continuing to have no other disability. When they receive a six-month prognosis, they would be eligible for assisted dying due to the same disability they have had for a very considerable time, and it would remain the only disability they have had in their entire life. I remain concerned that my hon. Friend’s amendment still talks about disability, potentially leaving that loophole.

[Kim Leadbeater (Spen Valley) (Lab)]

My hon. Friend makes an interesting point, but the purpose of the Bill is that a person with a terminal cancer diagnosis and six months left to live would have the choice of assisted death. As we have heard, they might have seen the suffering of relatives with a similar cancer, and they might have seen what their death looked like. I understand that people might disagree, but that is the purpose of the Bill.

[Daniel Francis]

I hear that point but, looking at my postbag, the people who berate me for not supporting the Bill often talk about their loved ones with motor neurone disease or Parkinson’s, which I understand from oral evidence will be exempt. We need to make it clear which disabilities and conditions will be eligible, and I am not sure that the amendments before the Committee nail it down. I am concerned that the wording would lead to potential loopholes and legal challenges.

We should still be concerned about legal review of the Bill, based on indirect disability discrimination. The Equality Act says that indirect discrimination happens when a rule, a policy or even a practice that applies to everyone disadvantages people with a particular disability, compared with people who do not have that disability, where that cannot be shown to be justified as being intended to meet a legitimate objective in a fair, balanced and reasonable way.

If we accepted this amendment to allow the inclusion of cancer and some other disabilities set out in the Equality Act, I believe it would be argued in due course that other disabilities meet the criteria for assisted dying and, despite the promises made to this Committee and to the House in good faith, the loopholes would allow the criteria to be widened.

Other amendments in this group retain the reference to the Equality Act 2010, which could equally result in legal challenges down the line, for the reasons my hon. Friend the Member for Spen Valley outlined this morning. I am not deliberately being difficult, but I am not sure that any of the amendments would completely achieve what they seek to achieve.

I await the Minister’s view on the matter but, as things stand, I am concerned that we will take the clause back to the House without completely satisfying Members’ aims. By allowing those with cancer to seek assisted dying, there could be a loosening of the rules for other disabilities. I fear there could be manuscript amendments on this matter, but I await the Government’s view on the robustness of these amendments if they were to be accepted.

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

Debate between Daniel Francis and Kim Leadbeater

Tuesday 11th February 2025 Public Bill Committees

[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.

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

Debate between Daniel Francis and Kim Leadbeater

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[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—

--- Later in debate ---

[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.]

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

Debate between Daniel Francis and Kim Leadbeater

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[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.