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

Daniel Francis Excerpts

Committee stage
Tuesday 21st January 2025 Public Bill Committees

[The Chair]

I think you have one more. Would you also like to speak to amendment (i)? It is on the other side of the amendment paper, which we nearly all missed.

Let me assist the hon. Lady: she wishes us to insert, at the end of the table in the sittings motion, a new set of witnesses on Thursday 30 January, to give evidence until no later than 5 pm.

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

On a point of order, Sir Roger. Amendment (i) clashes with the sitting times on Thursday suggested by my hon. Friend the Member for Spen Valley.

[The Chair]

The hon. Lady may deal with amendment (i) and with the hon. Gentleman’s proposal. At this stage, let me simply call Kit Malthouse to speak to amendment (b).

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

Daniel Francis Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Liz Saville Roberts]

Q May I develop that a tiny bit? In that case, you would see the timeline possibly being different for England or Wales in order to respect and take account of those operational differences?

Professor Whitty: Yes. I think in principle it would be better to be as close as possible, but if there were important practical differences why it was not going to start on the same date, the more important thing would be to get it right rather than to get simultaneous timings.

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

Q I hear what you have said already regarding capacity. Of course, the Mental Capacity Act relies on the capacity principles. They include the presumption of capacity, the principle that a person cannot be seen as lacking capacity unless all practicable steps have been taken to support them to make a decision, and the principle that a person cannot be seen as lacking capacity merely because the decision is unwise.

I also heard what you said about the scaling of decision making, but within the Bill, in some of those scenarios there is no mandating; the word “may” is used rather than “must”. I want to understand your viewpoint on whether it would provide stronger safeguards if those parts of the Bill were tightened to include “must” rather than “may”, and if the reference to capacity were replaced with a separate definition of “ability”, as proposed in our amendments.

Professor Whitty: I am probably not the best person to ask about the exact drafting of the Bill in terms of “may” and “must”, but I can answer the second part of your question, which is really important.

If there were no Mental Capacity Act, there would be an argument, which has been used for a long time, that the Bill would have to define what was meant with a fair degree of clarity. It would not be able to do that with just one clause; there would have to be quite a lot of clauses, if I am honest. All systems of this sort are going to be imperfect. The reason why I think it is sensible to base yourself on the Mental Capacity Act is that it is well used and well understood in practice by practitioners every day. Having a system with two completely separate groups of assessment, one of which has never been tested in the courts or used outwith this Bill, would lead to a whole set of potential complications and ambiguities, which are not there at the moment because we have a well-tested mechanism through the Mental Capacity Act.

People should move away from the Mental Capacity Act with some caution, because I think that will cause as many problems as it solves. It is not clear to me what problem people are trying to solve by doing that, 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. That is the foundation of some of the disquiet that people have had, but it is central to how the Mental Capacity Act works in practice.

[Dr Simon Opher (Stroud) (Lab)]

Q You have already said some words about prognosis, which is causing some anxiety. First, are you happy with a six-month prognostic period? Secondly, the Bill says that death should

“reasonably be expected within 6 months.”

Is that in line with your thoughts on the matter?

Professor Whitty: I think that is a reasonable point in time provided that, in taking that period into account, Parliament assumes that we mean a central view that this is six months, although it might be before that and it might be after. Other times would be equally reasonable, but if you are going to choose one, then six months is reasonable. It is generally very predictable that someone is going to die in the foreseeable future, but predicting whether that will be in five months or seven months is a lot harder, and there would be some caution.

Notably, in the countries that have chosen to go down an assisted dying route—a variety of different ones have been chosen—a significant minority of people die before they actually get to the point where that occurs because there is uncertainty in both directions. I think that period is as good as any other, but I want people to be clear that this is not an exact science where you can say, for example, “On 20 August.” It is not as tight as saying that a baby is going be born on a certain date. It has a wider spread of uncertainty around it. In the overwhelming majority of cases, that does not mean that it will go on for months or years longer, but there will be some degree of uncertainty.

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

Daniel Francis Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[Sarah Green]

Q I have a follow-up question. The Bill introduces a monitoring and review process, including an annual report by the chief medical officer. Do you have any reflections on whether that needs strengthening?

Dr Clarke: Yes, I think that in the spirit of transparency and making this as safe as possible, it needs to be significantly strengthened. I would suggest that there need to be more safeguards in place. For example, if anyone in a hospital—whether staff, patient or family member—has concerns around a particular case, there should be mechanisms for those to be raised in a proactive way. Just as we have guardians of safe working and freedom to speak up guardians in hospitals, those opportunities to assess and appraise the safety in real time once a Bill is in place—I just do not think they are robust enough at all. The more we can have of that, the more that will allay people’s fears.

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

Q My question is to Dr Ahmedzai. In the paper you produced you talked about specific recommendations regarding the training and experience of the doctors involved in the process. You suggested five years, for instance, and some other experience. Have you got examples elsewhere in the world where such a scheme has been implemented? Do you believe that we have enough trained doctors in the United Kingdom who have that level of experience and would therefore be taking part in this part of the process?

Dr Ahmedzai: You have caught me on the hop, because I cannot quote the level of training that doctors have received elsewhere, except for examples in the Netherlands, where there are additional doctors who are, through their medical association, trained specifically in assisted dying. I cannot tell you the number of years’ experience that doctors have in other countries. I felt that it was self-evident that you would want doctors who are experienced—three years, five years or whatever post qualification—and who have seen real life. It is up to the medical associations to stipulate how much experience, but I would not like the idea of a doctor immediately, having got their certificate of training, going off and making these kinds of decisions. That is why I suggested that ballpark figure.

[Daniel Francis]

Q Just to clarify, is there nowhere else in the UK where we have that? I am just trying to understand, because we would need to go away and do a piece of work on whether there are enough doctors with that level of experience if we were to take on that kind of recommendation. Is there nowhere else in the medical profession in the UK where we insist on that level of experience?

Dr Ahmedzai: Probably not, but this is a very, very special situation, and it may be, once it has become embedded in the health service, that that stipulation could move back.

I am so glad that Dr Clarke keeps coming back to training. One thing that is absolutely needed if this Bill goes forward is to take the topic of assisted dying out of being an optional training—where people might sign up for a course—to become mandatory. In the NHS, we do mandatory training for all sorts of things, including washing hands, lifting and basic life support. There should be basic dying support mandatory training as well. Why do we not have that? That kind of provision would become part of training doctors up to become good at those conversations that Dr Clarke is obviously involved in teaching, and in ensuring that they keep up to date with how the law is changing too. I would look to the royal colleges and the GMC to lead on those aspects.

--- Later in debate ---

[The Chair]

Not just at the moment. We will move to Daniel Francis.

[Daniel Francis]

Q Alex, in paragraph 8 of your written evidence you touch on clauses 9, 15 and 18 of the Bill and the potential complications that could arise when the substance is taken. Could you expand on the concerns you have about that?

Alex Ruck Keene: I should make it absolutely clear that all I am trying to do is make sure that whatever law is passed is a good law and has as few inadvertent consequences as possible. My concern here arises out of the fact that understandably the proponents of the Bill want to make it very, very clear that this is about people carrying out a final act, and no doctor is allowed to do something that involves going beyond that. At the same time we have a situation where doctors—I am using the word “doctor” slightly loosely, but for present purposes that is what we are talking about—have to be present and have to remain with the person. We know that there will be some people for whom there are complications.

My concern is to make sure that there has been sufficient consideration given to what exactly a doctor is meant to do at that point, because it seems to me that it ends up putting the person who is undergoing those complications in a horrible position. It is also—I am perfectly happy to use this phrase—putting the doctor in a position of extraordinary moral distress. Are they at that point supposed to try and rely on the doctrine of double effect and say, “All I am trying to do is treat the complication, not bring about your death,” but the Bill is saying, “No, you are not allowed to do that”? I understand entirely why the intention is to say that the doctor must always be hands off, as it were, but you need to super clear that you are going to put some people in some very, very difficult positions, and Parliament needs to be clear-eyed about that.

[Dr Shastri-Hurst]

Q I want to stick with clause 18, because as it stands there can be some assistance by the clinician but there cannot be total delivery or administration by the clinician. You could end up with a scenario where, for instance, you have somebody who is tetraplegic and then gets a terminal diagnosis, has capacity to make the decision and wants to end their life, but they do not have the physical means of doing so. Do you think that is open for challenge on grounds of discrimination?

Sir Max Hill: I would not look at it on grounds of discrimination. What I would do is put that clause alongside what are generally referred to as the slippery slope arguments in other jurisdictions. In other jurisdictions—Canada might be one and some of the US states might be another—the provision of life-ending medication is expressed in a form of treatment by a doctor. This is not that. We are clear when reading clause 18 that it is not a permission to administer; in fact, it is a prohibition on administration. It is making available in certain tightly defined circumstances and then standing by—not necessarily in the same room, as stated in subsection (10)—while the self-administered medication takes effect.

Having said that, I am absolutely clear that there is only so far a Bill or Act of Parliament can go as primary legislation. There is then further distance that must be covered by the provision of practical and professional rules, under the auspices of the national health service here, to indicate precisely the circumstances in which this will physically happen. I do not see that as discriminatory; we are dealing with a tight category of defined individuals to whom this applies and it does not apply to anybody outside that, as we have just discussed. But it is not prone to the slippery slope arguments of something that is generally to be made available in the course of treatment. In fact, the Bill has been couched in a very different way.

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

Daniel Francis Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[Dr Tidball]

Q Thank you. That is extremely helpful. Clause 2(3)(a) and 2(3)(b) cover the point that you made about those groups, stating:

“For the avoidance of doubt, a person is not to be considered to be terminally ill”

just by those statuses.

I am very interested to hear about the implementation taskforce. I am personally keen that if the Bill passes into law, we monitor the impact on disabled people on an ongoing basis. Do you have any recommendations for how we can ensure that disabled people have a strong voice in that process, to keep the provisions in check and understand the impact, if any, on the culture within the NHS and other services?

Dr Mewett: Only that if there is an implementation taskforce—most legislation requires an implementation period; in our case, it was 18 months—a strong disability advocate is involved in it.

Dr McLaren: It would be to plant the seed of funding for research throughout the implementation and early stages of voluntary assisted dying legislation. Conducting qualitative research particularly in this area would be very revealing, to understand not only everyone’s reasons for applying for voluntary assisted dying but also those of marginalised groups and whether there are any other factors influencing their decisions.

That also extends to research conducted in culturally and linguistically diverse populations. We have a concern about health awareness, and particularly that what we affectionately call our gag clause—whereby our medical practitioners are not able to initiate conversations with patients about voluntary assisted dying—unfairly disadvantages people from culturally and linguistically diverse populations and those who have lower levels of health literacy in accessing information about the care available to them and their health options. We feel that that comes mainly from discussions with general practitioners. Not allowing those general practitioners to discuss the options with them certainly does not do them any favours.

Dr Fellingham: Both my colleagues have made excellent points that I was going to make. I think they have covered it very well.

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

Q Yesterday, we heard from some clinicians from the USA, who outlined how they have reviewed the scheme in practice. They said that their waiting period between the two clinician appointments has been reduced from 14 days to 48 hours, and that in some cases the second clinician has been removed and replaced by a nurse practitioner. Have you undertaken a similar review? Have you made any changes as a result?

Dr McLaren: We are undergoing our review at the moment. It was meant to commence after the first five years of operation of the Voluntary Assisted Dying Act in Victoria. That review has yet to be tabled or published. Certainly, the recommendations that we have submitted to it involve reducing or removing the so-called grace period, or waiting period. My experience, and that of an almost homogeneous group of practitioners, is that patients serve their own lock-out periods, grace periods and periods of reflection, as I believe you have called them, before applying. Subsequently, there are several logistical pauses throughout the process, which also instigate their own grace periods. The addition of further periods for reflection is, I think, superfluous and unnecessary.

Secondary to that, in all our Bills and Acts, we have an ability to bypass those waiting periods. Forgive me if I am wrong, but I did not see the capability to bypass any of those in your current Bill. If the person has a prognosis of less than seven days, they should be able to be expedited and not serve that time. I do not see the purpose of putting extra time on these people to apply for this.

I always say that people do not know that they have six months to live until they have six weeks to live. We as oncologists do not know that either. In a matter of one CT scan, we can change a person’s prognosis from 18 months to three months. All of a sudden, they start thinking about how they see their life ending, and then they have to engage in a process of application. Out of that three-month period, it might take a month to apply. My recommendation has always been to increase the prognostic eligibility criteria from six months to 12 months and to remove waiting periods, which patients will place on themselves regardless of the legislative requirements.

[The Chair]

Dr Mewett, you are nodding.

Dr Mewett: Yes—not nodding off, you will be pleased to know.

[The Chair]

It is not that late yet.

Dr Mewett: As I am a member of the Victorian VAD review board, as well as being here as a palliative care practitioner, I want to give you an insight. The review board is now a statutory body under the Victorian Act. We are in the process of finalising a number of recommendations to our Health Minister to make some adjustments to the law. I am not at liberty to go into detail, but many of those things, such as the gag clause and the waiting period, are really up for challenge. They have been shown not to be safeguards but, in fact, impediments and barriers to equitable and compassionate access to the scheme.

Dr Fellingham: I agree with Dr Mewett. They seem like a good idea, but they do tend to be barriers more than safeguards.

[Daniel Francis]

Q Could I clarify whether there is also a review of keeping two clinicians in the process? We heard yesterday that that is not the case elsewhere.

Dr Mewett: One has to understand that although there are some broad similarities, there are a number of differences state by state, and now the Australian Capital Territory has legislation. In the ACT, they have passed legislation, although it has yet to come into practice, whereby one of the two assessing practitioners could be a suitably qualified nurse practitioner. In all the other states of Australia, each of the assessing practitioners has to be medically trained. Different states have different requirements. There is also, in some states, the ability for a suitably qualified nurse practitioner to be the administering practitioner in the case of practitioner-administered voluntary assisted dying.

[The Chair]

For the benefit of our guests, the next questioner, Stephen Kinnock, is our Health Minister.

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

Daniel Francis Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

[The Chair]

Colleagues, before we continue, let me say that we have 13 questions and less than 30 minutes, so the question and the answer need to be no more than two minutes.

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

Q I want to ask about capacity. Chloe, I think you said patients are sometimes given the drug some time before they die, so I want to understand where capacity assessments are taken and at what stage during the process.

Dr Furst: Capacity assessments are taken every time a doctor sees the patient. In my state, that would be at first assessment—first request—then a consulting doctor would come and do another hour-long assessment of the patient and assesses capacity at that stage, and then I would come back as the co-ordinating doctor for a second or third assessment of the patient, and assess capacity. They would then be given their drug, if it is self-administered. We assume and hope that they retain capacity, and we strongly advise patients and families that, should they lose capacity, they will have voided their permit and they cannot take the drug, but there is less oversight of that. However, we know that the majority—over 80%—of these patients are connected with palliative care, so we often have community teams going in and seeing them, and we are still touching base with them, maybe more peripherally, and checking capacity as we are having conversations or as we are coming and doing home visits from a palliative care perspective. If it were deemed that the patient is quite delirious, the permit would be voided and we would remove the substance from the house. If it is practitioner administration, we are also, obviously, testing capacity right at the moment that we are administering the substance.

[Dr Neil Shastri-Hurst (Solihull West and Shirley) (Con)]

Q I will direct this question initially to Mr Greenwich. The issue of coercion has been a significant concern to many in the debate. In line with the New South Wales legislation, the Bill as proposed does not provide a definition of coercion, either explicitly or by reference to other legislation. Have you found that to pose a difficulty in your jurisdiction?

Alex Greenwich: In New South Wales, our legislation deals with and goes through coercion in quite some detail, with pathways to assess it. It deals specifically, for example, with a situation in which someone is under coercion from a person who is a beneficiary of their will; obviously, the person seeking voluntary assisted dying then becomes ineligible. In the space of coercion, that is a key part of the training for a doctor who will be a consulting or co-ordinating practitioner. We have made it a criminal offence in New South Wales, and indeed our board will report on it and on whether eligibility for access to voluntary assisted dying has been denied to someone. Our most recent report indicates that it has.

The overwhelming experience is that having voluntary assisted dying in place is itself a safeguard from coercion for people with a terminal illness. If someone wants to end their life quickly, voluntary assisted dying through a regulated process is not the option that they are going to take. Someone engaging in voluntary assisted dying will be assessed against coercion and against decision-making capacity, and will have to make sure it is an enduring decision.

When we talk about coercion, and the concern that people may currently have in the UK about people with a terminal illness feeling in any way coerced, the experience in New South Wales and elsewhere in Australia is that voluntary assisted dying has provided a safeguard in that regard. Our legislation, the training and the reporting is very clear on that.

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

Daniel Francis Excerpts

Committee stage
Thursday 30th January 2025 Public Bill Committees

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

Q286 Professor Owen, you have talked extensively about the complexity of the Bill. I think it fair to say that our previous witnesses this week believe that the simplest safeguards are the safest. I stress that the simplest does not necessarily mean the weakest; it means a straightforward plan. Do you agree with the points that the chief medical officer and others have made about simplicity? Where do you stand on that, and on the broader point about complexity?

Professor Owen: I am somewhat reminded of the old adage that for every complex problem there is a simple solution that is false. We are dealing with complexity here—I think we have to accept that—but complex law or poor law will not provide good safeguards. If you step back and think about what the Bill is really about, at its simplest, it is about the decisional right to end one’s own life in terminal illness.

Associated with that is the concept of mental capacity. I have had over 20 years of research interest in mental capacity. When I look at the issues relating to mental capacity with the Bill, they are complex, but the other important point to understand is that they are very novel. We are in uncharted territory with respect to mental capacity, which is very much at the hub of the Bill.

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

Q To elaborate on that point, Professor Owen, the Mental Capacity Act 2005 sets out the principles that a person must be assumed to have capacity, that a person cannot be treated as lacking capacity unless all practicable steps have been taken to support them and that a person cannot be treated as lacking capacity merely because their decision is unwise. Is it those issues that are causing you concern about capacity, or is it something else?

Professor Owen: It is a bit more fundamental than that, actually. If you look at how mental capacity features in the Bill, the test or the concept that clause 1 rightly invites us to consider—rightly, I think—is the capacity to decide to end one’s own life. The Mental Capacity Act comes in at clause 3.

I have looked at mental capacity a lot in research, and there is no experience of the decision to end one’s own life. It is outside the experience of the Mental Capacity Act, the Court of Protection, the associated research and practitioners on the ground. The reference to the Mental Capacity Act in clause 3 puts you into an area where there is no experience of the central capacity question under consideration. It is very important that Parliament be clear-eyed about that. I can talk about the Mental Capacity Act in detail if you like, but that is the main point that I want to make.

[Daniel Francis]

The Chair may cut you off, but I am happy for you to continue if she allows it.

[The Chair]

It is one question, one answer. I call Danny Kruger.

--- Later in debate ---

[Juliet Campbell (Broxtowe) (Lab)]

Q My question is to Professor Preston. I will go back to something you said in your last answer, when we talked about how people are treated, and the differences and inequalities across society but also within our healthcare systems and how things are done. This was highlighted specifically during the pandemic. How do you think these inequalities will undermine the principles of the Bill?

Professor Preston: I think it is about having that additional consideration. When additional consideration for, perhaps, social deprivation or about people from minority groups is in the training and is at the forefront of people’s thinking, they can address it.

I will give you an example. We did a study looking at access to palliative care. I know you have heard a lot about there being a postcode lottery and things like that. One of our areas is one of the most deprived coastal communities in the country, and yet it had equal access for people across all areas of society, because they brought in people to target anyone from those socially deprived areas.

Equally, at the beginning of the first wave of the pandemic, at one of the big London hospitals, we analysed the data because we were concerned about access to palliative care services. Were people accessing it during the pandemic? We also looked by ethnicity. What we found was that not only during the pandemic, but pre-pandemic, if you were non-white, it took—I don’t know—three or five days longer to get that referral.

We had an idea that from some of the research we had done on social deprivation, people are making assumptions. It is not about people making horrible decisions, but they are making assumptions: “Oh, they will have a big family—the family will look after them. This will happen or that will happen.”

The nurse consultant, Claude Chidiac, went in and did training for the staff and said, “Don’t assume that just because people come from an Afro-Caribbean family that they have got this big family.” Within a year, when the second wave happened, the difference had gone. It can be at the forefront of training and you can make people really think about it. I would say—I think someone said it yesterday—that there is almost an inverse inequality, because I think those families and those communities will be really trying to protect people from even thinking about going for it.

[Daniel Francis]

Q My question is to Claire Williams and follows on from Dr Opher’s question. Clause 18(9) says that once the person has self-administered the approved substance, the doctor must stay with them until they have died, or until it has been determined by the co-ordinating doctor that the procedure has failed. We know from overseas that, in a very small number of cases, the procedure may take three or four days, so clearly the doctor cannot stay with them the whole time. Subsection (10) says that the doctor need not be in the same room as the person to whom the assistance is provided. I want to understand how that could be strengthened in terms of safeguarding. The clause says that the doctor must stay with them but, first, it is clearly not practical for the doctor to stay with them for a number of days, and, secondly, it goes on to say that the doctor need not be in the same room.

Claire Williams: Again, I can only apologise, as my evidence is about a committee-based, panel approach to decision making rather than what happens at that point of end of life. I do not know whether somebody else is able to come in.

Professor Preston: I can take that if you want.

[Daniel Francis]

Thank you, Professor Preston. Sorry—if you agree, Mrs Harris.

[The Chair]

I wondered who was chairing for a moment.

Professor Preston: We raised that concern about doctors staying with people for prolonged periods of time. I think it will come down to what “self-administered” means. In our written evidence, we said that, in Switzerland, that has increasingly meant setting up an intravenous drip and the patient opens the port. In that case, you are talking about different drugs and it would be much speedier. But we have data on oral ingestion from Oregon, and I think 30% of cases took an hour to die. Most of us know that in the NHS, an hour with a doctor will be pretty unlikely, even if they are in another room. Most assisted deaths across the world occur in a home or a nursing home, so you do not have doctors there—we are not talking about GPs being out for prolonged periods of time. The method of administration may change that as well.

The other thing is that doctors are not used to being with patients at the end of life—it is nurses and healthcare assistants. So you are actually bringing in a new role for them to be with someone as they die. I am not saying that they have not had that experience, but they are not the traditional healthcare workers who are at the bedside. Again, that would need to be accounted for in the training so that they are more used to being around people who are at the end of life. They will have had some experience, but it is very much in the realm of healthcare assistants and nurses.

--- Later in debate ---

[Dr Opher]

Q Conveniently, my question follows on from that. On our first day of evidence, we had Chris Whitty, the chief medical officer, saying that when you are assessing capacity, the vast majority either clearly have capacity or clearly do not, and there is a small section in the middle. Michael, would you say that a role of a GP would be to inform those definite yeses and definite noes, and then they would perhaps not have the skills for the intermediate ones? I am just suggesting that.

Dr Mulholland: As GPs, we can assess capacity. In this situation, the college’s position would be that we feel the GP should not be part of the assisted dying service, so we would see a standalone service that we can signpost our patients to. The GP role may go on to a different route afterwards, and it may be part of other things with palliative care and looking after the families. We think that some GPs may want to be involved and take that step, but we know from our membership surveys that we have had at least 40% of members in the past who would absolutely not want to have any part in that.

Similar to other services, such as termination of pregnancy, we think that the best option would probably be that the GP could signpost to an information service, such as something like what the BMA suggested the other day. They would not have to do anything more than that, and they would not withhold any option from the patient. We could discuss that these things exist, but we would not be doing that capacity assessment. Obviously, to give patients information about what they are going to, as you know, we would assess their capacity to take that information in, retain it and do the right thing with it for them. We would be doing that level of capacity assessment, but not further on in the process, where you are assessing whether a patient is able to make a final decision. I think Chris Whitty referred to the various levels of capacity. As the decision gets more difficult and complex, you want a greater understanding with the patient that they really know the implications of what is going on, and we just would not be doing that in general practice.

[Daniel Francis]

Q My question is to Dan Scorer. In the Mental Capacity Act 2005, the definition of “capacity” means that many people with a learning disability are presumed to have capacity. We have heard comments from others on the panel, and I am trying to understand whether you feel that the existing provisions in that Act would cover those with a learning disability or whether you would need that greater advocacy, as you discussed, or something different from the Act. Do you have any comments on the fact that family members—lifelong carers, in many cases—would have no requirement, under the Bill or the Act, to be involved in the decision or to comment on their family member’s capacity?

Dan Scorer: The Mental Capacity Act starts from the principle of presuming capacity. The question would be whether, when someone who is terminally ill puts themselves forward for assisted dying, doubts start to emerge about whether they actually have the ability to make that decision in terms of whether they can understand, retain or weigh the information and communicate their intentions.

As I mentioned earlier, our concern is how those discussions around assisted dying are initiated. For many people with a learning disability who are terminally ill and in an incredibly vulnerable position, doctors are very important and influential figures. Having a doctor come to you and say, “What do you think about assisted dying—is that something you might want to consider?” could move them towards or into potentially accepting a course of action that they had never considered before.

That is why I was saying that it is about having advocacy support around that discussion and, as you were saying, about the role of families. Individuals should be able to choose who supports them with those discussions, whether it is friends or family members or an independent advocate—that would probably be our preference—who is specifically trained to support people with a learning disability who are considering their end-of-life options.

There is a lot that could be done in addition to what is in the Bill already to potentially much better support people who are considering end-of-life options and to have other professionals who could input into multidisciplinary discussions, potentially around capacity assessment.

--- Later in debate ---

[The Chair]

May I thank the panel for giving evidence today? We really appreciate your attendance.

[Daniel Francis]

On a point of order, Mrs Harris. Yesterday, we heard evidence about the impact of the Bill on different groups with protected characteristics, including age, disability, race and sexual orientation. We heard from the EHRC, an arm’s length body of the Government, that it strongly recommends that a full impact assessment, a human rights assessment and a delegated powers memorandum be undertaken before the Committee begins line-by-line scrutiny.

We have also heard from witnesses about the impact that the Bill will have on disabled people, from Disability Rights UK and others, on black and minority ethnic people, from Dr Jamilla Hussain, from LGBT people, from Baroness Falkner, and on those from a low-income background, from Sam Royston of Marie Curie. We heard from Dr Sarah Cox and Dr Jamilla Hussain that evidence from their work shows that this Bill has a higher probability of pushing minority groups further away from seeking healthcare, while inequality pre-exists. As observed through the pandemic and from available data, minority groups do not always trust that their interests will be best represented in institutions that would enable the facilitation of someone’s death, should this Bill become law.

I therefore believe that on the basis of that advice, so as not to inadvertently widen health inequalities through Bill, it is essential to have health impact assessments. I appreciate that an equality impact assessment will be produced for Report stage, it will not be available for detailed line-by-line scrutiny. When we agreed the timetable for line-by-line scrutiny last Tuesday, we were not aware that this assessment would be produced, given it was first reported to the House during the money resolution last Wednesday. There is a risk that there will be a bigger impact on people with protected characteristics, and this will not be understood fully until the Government have produced the equality impact assessment. As things stand, that means that we will move into line-by-line scrutiny of the Bill on 11 February without a full understanding from the assessment of the impact of the Bill.

I am therefore minded to request a short Adjournment of the Committee so that, as advised, we can receive the assessments before we progress to line-by-line scrutiny. Please will you advise me, Mrs Harris, how I could secure such a motion to adjourn the Committee until we are in receipt of the evidence, as advised by the witnesses yesterday?

[Sarah Sackman]

Further to that point of order, Mrs Harris. I want to clarify the Government’s position. As the Committee knows, the Government are neutral on the Bill, but once the Committee has concluded its work and prior to Report, we are committed to publishing the ECHR memorandum, a delegated powers memorandum, the economic impact assessment that was committed to during the money resolution debate, and an assessment of the equalities impact of the Bill. In terms of the timing, it is necessary that the impacts that are assessed be of the Bill as it is brought forward. If the Bill is liable to change via amendments proposed by members of this Committee, it is important that we know what it is that we are assessing the impact of. That is why the proposed timing is to publish the impact assessment at that stage. The point is that before Members of the House come to a vote on Report and Third Reading, they will all have before them the impact assessment in respect of equalities and all those other aspects of the Bill.

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

Daniel Francis Excerpts

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[The Chair]

Will everyone ensure that all electronic devices are switched off or to silent mode? We now begin line-by-line consideration of the Terminally Ill Adults (End of Life) Bill. The selection list for today’s sitting is available in the room and on the parliamentary website. It shows how the clauses, schedules and selected amendments have been grouped together for debate.

I remind the Committee that a Member who has put their name to the lead amendment in a group is called first or, in the case of a stand part debate, the Member in charge, Kim Leadbeater, will be called to speak first. Other Members are then free to indicate that they wish to speak in the debate by bobbing. At the end of the debate on a group of amendments and new clauses and schedules, I shall call the Member who moved the lead amendment or new clause again. Before they sit down, they will need to indicate whether they wish to withdraw the amendment or the new clause, or to seek a decision. If any Member wishes to press any other amendment—including any of the grouped new clauses and schedules—to a vote, they need to let me know. I shall use my discretion to decide whether to allow a separate stand part debate on individual clauses and schedules following the debate on relevant amendments.

I hope that explanation is helpful. If any Member wishes to make a declaration of interest, they can do so now.

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

On a point of order, Ms McVey. Yesterday, members of the Committee received notification that, in the last week, we have received a further 242 pieces of written evidence and 159 pieces of correspondence. Last week, I had read every word of the original 110 pieces of written evidence and 56 pieces of correspondence, as well as studying all the amendments and tabling amendments of my own. As I said, however, more than 400 pieces of evidence and correspondence have been uploaded during the past week, with no deadline by which further such evidence needs to be submitted. Given the large number of evidence submissions every day, Members may well struggle to keep abreast of it and be able to say that they have read every piece of correspondence before the tweaking of the Bill.

I find it difficult to believe that any member of the Committee has been able to read all the evidence submitted since last Tuesday. For instance, the written evidence submitted by the chief executive of my local hospice, which she blind-copied me into on 20 January, was available for members of this Committee to read on 7 February, 17 days after she submitted it. That suggests that, as well as Members struggling to keep up, the Clerks are struggling to keep up. Given the sheer volume of evidence, we will not be able to consider it fully before line-by-line scrutiny.

I therefore seek your advice, Ms McVey, on how we can reasonably expected to begin line-by-line scrutiny when in the last week we have been presented with more than 400 documents, in addition to new amendments.

[The Chair]

I thank the Member for making that point of order. It is normal practice for evidence to come in, and for it to be submitted as it comes in. However, due to the large amount of evidence and its substance, and to the importance of the Bill and this line-by-line scrutiny, I will seek the advice of the Clerk and will come back to him.

--- Later in debate ---

It must therefore be proven that somebody lacks capacity.

[Daniel Francis]

The Mental Capacity Act is written to enable people to carry out day-to-day scenarios, such as buying a coffee or doing their banking, so that they are not challenged in every transaction in their life. It is therefore a very low bar to be deemed to have capacity. Does the hon. Member believe that it was written for this kind of scenario?

[Sarah Olney]

That is an absolutely relevant point. The Mental Capacity Act was not drafted in anticipation of it ever being used for this kind of scenario. Therefore, it is really incumbent upon us to weigh very carefully whether the Mental Capacity Act is the right way of assessing people’s ability to make this decision. As I was saying, it includes the presumption of capacity, and for a decision to end one’s life, an assumption of capacity to make that decision is a low bar, and we have lots of evidence.

--- Later in debate ---

[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—

[Jack Abbott]

We have spoken a lot today about further safeguards and provisions, beyond the Mental Capacity Act. However, I note that my hon. Friend has tabled amendment 339, which states that if a

“person has a learning disability or is autistic”

they

“must be provided with accessible information and given sufficient time to consider it”

and that, additionally, there must be a “supporter” or “advocate” with them. If that amendment was passed, would that satisfy some of my hon. Friend’s concerns about the Act?

[Daniel Francis]

I am hearing that that amendment will need some rewording, but it would address some of my concerns. I am working with Mencap, and further amendments will be tabled to later clauses of the Bill. I understand that one of our colleagues has also tabled amendments, which I welcome. However, I would still have concerns about the interpretation—and there are different interpretations—of the current code of practice when it comes to the involvement of carers and loved ones. Those concerns brought me to the place I came to on Second Reading. I did not seek to be the person standing here; indeed, a year ago, not only did I not believe that I would be a Member of Parliament, but I did not believe that I would be on this side of this argument. It is this particular point that has driven me to this position.

I will talk a little about evidence. The Law Society has a neutral position on the Bill, but it has said that, before the provisions become law, a comprehensive consultation should be undertaken to allow resident experts to share views on the appropriate definition of capacity for the purposes of the Bill. That is the position of the Law Society.

--- 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.]

[Danny Kruger]

I note the point about training, and of course we would all welcome the strongest possible training. As the hon. Gentleman implies, nobody has yet used the Mental Capacity Act to assess somebody for an assisted death; it would be completely uncharted territory for the whole system, including anybody providing training. How does he imagine that training might be designed to allow for the Mental Capacity Act to be applied in this case, when it would be completely novel?

[Daniel Francis]

As I say, I am not an expert on this matter from a legal or medical background, but those are the concerns that have driven me to the place that I am in.

Dan Scorer, from Mencap—as my hon. Friend the Member for Spen Valley knows, I was adamant that Mencap would give evidence to us—said:

“building on the previous question about the adequacy of the Mental Capacity Act, there is a question about the adequacy of training, awareness and compliance with that Act now.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 269, Q350.]

He clearly cited what many people know occurred during covid, with “do not resuscitate” orders and decisions being made on people’s behalf. That is what has driven me to this place, and that is why I will support the amendment. I also have further amendments on this issue later on down the line.

I completely understand what my hon. Friend the Member for Spen Valley said about training in relation to these decisions and scenarios. At the end of life, people should have autonomy and choice, but if that comes at the price of one person, in a borderline capacity decision that is made on their behalf, it will be one death too many.

[Danny Kruger]

It is a great pleasure to follow the hon. Member for Bexleyheath and Crayford, and I pay tribute to his powerful speech. I wish more people on our side of the debate and on the Committee had medical backgrounds, but I am glad that we have someone who has such direct personal experience of supporting people with learning disabilities. I am grateful to the hon. Gentleman for everything he said and I entirely agree with it.

I want to speak in support of new clause 1, tabled by the hon. Member for Richmond Park, to replace the use of the Mental Capacity Act with a new ability test. This goes to the heart of the Bill: it is absolutely crucial. Clause 3, which her new clause would replace, is in a sense the essence of the Bill. It is the shortest clause, but perhaps the most important one, because it determines the means by which somebody will be assessed to be capable of making this decision. It is a very important protection—and, at its simplest, this is a very confusing and complicated area. I will no doubt confuse myself in the course of my speech, but I have a simple observation to make, which the hon. Lady also made very well. We are dealing with the issue of impaired judgment; currently, under the Mental Capacity Act, it will be possible, through the terms of this Bill, for somebody whose judgment is impaired by virtue of a mental disability or mental illness to successfully apply for an assisted death. I do not think that is what the public want and I do not think it is what the House of Commons voted for. I think it is a misunderstanding of the principle of the Bill, which did win support on Second Reading.

The simple fact is that somebody’s judgment can be impaired under the Mental Capacity Act, but they could still have capacity. We have repeatedly heard points made about how the Mental Capacity Act applies in the normal conduct of life for disabled people—for people with mental disabilities. For instance, people can be anorexic, depressed or suicidal, and of course they can still consent to all sorts of decisions that affect their life, including medical treatments. A person can consent to have surgery on a broken leg while depressed; there is no difficulty whatever with that and of course that is appropriate. That is rightly the basis on which we currently judge capacity.

New clause 1 would build on the terms of the Mental Capacity Act. It would add to the principles of autonomy and of people being able to understand, use and weigh the relevant information. As I said in an intervention, the key point is that using this new test of ability would ensure that the person was fully able to do those things—fully able to understand, use and weigh the relevant information. In the case of impaired ability, they would not be considered to pass the test.

We hear a lot that this is the toughest Bill in the world, with the highest safeguards. It is worth pointing out that in Oregon, which this Bill is largely inspired by, there is an impaired judgment test. There is a capacity test similar to that in the Mental Capacity Act, but people are also required to demonstrate that there is no impaired judgment, and that is exactly what the hon. Lady is seeking to achieve. Her new clause would build on the terms of the Mental Capacity Act with these key principles about understanding information, but would ensure that it was a full understanding, with no impairment. It would strengthen the Bill without complicating it. In fact, it would significantly simplify it, because at the moment—this is the substantial issue with the application of the Mental Capacity Act—a huge complication is involved when we go into the forest of the MCA and try to apply it in these terms. When we try to navigate our way through the MCA in pursuit of an assisted dying application, there is a whole series of complications.

I will cite some of the evidence that we received. The Royal College of Psychiatrists, which we heard from, stated in its written evidence:

“It is the RCPsych’s view that the MCA is not sufficient for the purposes of this Bill.”

We also had evidence from King’s College London’s Complex Life and Death Decisions group, which is a group of world-leading professionals working on issues relating to the end of life. They say that use of the MCA for assisted suicide would be “an entirely novel test”. I note that the hon. Member for Penistone and Stocksbridge—and I think my hon. Friend the Member for Solihull West and Shirley—made the point that an “ability” test would be a novel term. I acknowledge that the term “ability” is not currently set out or recognised in law in the same way that capacity is, but as I said, it is clearly defined in new clause 1, as tabled by the hon. Member for Richmond Park. Of course it is going to be novel—we are talking about something that is entirely novel. Assisted suicide is a new measure that is being introduced, so of course we have to have a new measure by which we define who is appropriate.

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

Daniel Francis Excerpts

Committee stage
Wednesday 12th February 2025 Public Bill Committees

[Rebecca Paul]

I am sorry, but I am going to give way to the hon. Member for Bexleyheath and Crayford, if he still wishes to intervene, as I am aware that he has been waiting.

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

I want to bring us back to the points raised by the right hon. Member for North West Hampshire. I may have misread this, but I understand that, under the current law and under the law as it would stand if this legislation were introduced, it would remain an offence to encourage somebody to commit suicide with a 12-month diagnosis—perhaps someone with motor neurone disease or Parkinson’s disease, who may still be a loved one. I do not understand the counter-argument about not using the word “encouraged”: it would remain a criminal offence, unless I am mistaken, to encourage someone to take that decision if they had a diagnosis of longer than six months left to live.

[Rebecca Paul]

That is exactly right. As I have mentioned, I am not bringing in the concept of encouragement; it is already in the law and currently an offence. I am putting forward this logical amendment in order for the Bill to deal with that. If we do not do that, we have not circled the wagons.

--- Later in debate ---

[Naz Shah]

No, I was talking about another hon. Member, not the Minister. We already have laws to protect people from domestic violence, but that does not mean that they necessarily access them.

[Daniel Francis]

From what I understand from the promoter of the Bill, the argument is that we should put these measures in place to protect from coercion people who have less than six months to live, but we would not put those protections in place for people who have nine or 12 months to live. If we are putting the measures in place for someone with six months to live, why are we not doing so for someone with nine or 12 months to live?

[Naz Shah]

My hon. Friend makes a valid point. There has already been a test case, and the Court of Appeal has ruled that undue influence is relevant to medical decisions and that doctors must look at it. If that is already a ruling, I struggle to understand the resistance to adding the words “undue influence” to a Bill that, in the promoter’s own words, should be the safest in the world. A judge has already ruled on it. We already know that we are not going to get to a judge. I struggle to understand this.

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

Daniel Francis Excerpts

Committee stage
Tuesday 11th February 2025 Public Bill Committees

[The Minister for Care (Stephen Kinnock)]

It is a pleasure to serve under your chairship, Sir Roger. As was noted earlier, the Government remain neutral. My role here is not to offer a Government view on the merits of the amendments but to provide a factual explanation of their technical and practical effect, to assist the Committee in its scrutiny. This group of amendments focuses on the concept of mental capacity. As drafted, the Bill, in clause 3, states that

“references to a person having capacity are to be read in accordance with the Mental Capacity Act 2005”,

with sections 1 to 3 of that Act establishing the principles and criteria for assessing a person’s capacity to make decisions. New clause 1, which would replace clause 3, and amendments 34 to 47, would collectively introduce the concept of an individual having the ability to make the decision to request assistance to end their life. A person’s ability would be determined by whether they could

“fully understand, use and weigh the relevant information in accordance with regulations made by the Secretary of State”.

That is intended to replace the term “capacity”, used in the Mental Capacity Act 2005, which provides a very specific definition of what it means to lack capacity in relation to a particular decision. A lack of capacity under this framework means that a person must be unable to understand, use and weigh information relevant to the decision, and that that must be directly caused by

“an impairment of, or a disturbance in the functioning of, the mind or brain.”

The “ability” proposal, as drafted, deals only with the use and weight of information.

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

To go back to the point I made this morning—I am happy to stand corrected, but nobody has disputed it—two issues continue to concern me in relation to the Mental Capacity Act and the code of conduct. The first is that the doctor would have a choice, under chapter 5 of the guidance, as to whether it is practical and appropriate to consult other people—with regard to learning disability, for instance.

Also, we have not discussed principle 2 in chapter 2, which says that the doctor has to do everything practicable to try to help the person to make the decision for themselves, before concluding that they do not have the capacity to do so. The principal concern for some Members remains those issues in relation to the Mental Capacity Act, which have not been considered for this scenario. I would like the Minister to address them and the fact that that Act, which was written 20 years ago, was not written for this scenario.

[Stephen Kinnock]

The fundamental position of the Government is that the Mental Capacity Act as it stands is a known quantity. It provides the legal base for a whole range of measures and interventions, and the Government’s view is that it would be an adequate legal base to operationalise the Bill should it receive Royal Assent. Our position on it goes no further than that; it is simply a matter of fact that there is a piece of legislation that is a known quantity.

--- Later in debate ---

[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.