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 (Twelfth sitting)

Daniel Francis Excerpts

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Naz Shah]

One of my concerns is that although the Government position in relation to the Bill, as they have said, is neutrality, the Government, in my opinion, have taken a position without an impact assessment, which might suggest that there is some ambiguity. Would the Minister therefore support redrafting potential amendments to include that? If it did specify a doctor or nurse, would the Government then, in their tidying-up, be prepared to accept that amendment?

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

Referring back to Dr Cox, she said:

“We need to make sure that the 75% to 90% of people who are dying and need palliative care are getting it. We need to make sure that there is not inequity in palliative care, so that you do not have to be white and rich and have cancer to get good palliative care. We need to make sure that hospitals have seven-day services. Seven-day-a-week cover is unavailable at 40% of hospitals.” ––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 78, Q101.]

Does my hon. Friend agree that we need an inequality impact assessment to understand the current position and to get that right, in line with the Bill?

[Naz Shah]

My hon. Friend is absolutely right. Without the impact assessment, how do we know what we are dealing with? That would be a normal way of progressing a Bill and dealing with amendments such as these. It feels as though we have just talked about something when the Government have already had a position on it, or have supported a particular position on an amendment.

To conclude, I will press the amendment to a vote, simply because it is important that we explore every option. We are already specifying what doctors have to do. I maintain again that there are 100,000 people in this country who do not access palliative care as it is. Palliative care is crucial when we are talking about end of life and people who have had a diagnosis of less than six months to live.

We will talk about illness and diagnosis in the next round of amendments, but on this amendment, I do not think that ensuring that somebody has at least explored that option is, as the hon. Member for Solihull West and Shirley repeated at least three or four times, “bogged down”. For me, it is not bogging down when we are talking about providing assisted death. The Bill is the biggest legislation on a conscience vote since 1967 in this House, and I do not care how long it takes. I feel very strongly that if we are to deliver a Bill that my hon. Friend the Member for Spen Valley said has the tightest safeguards in the world, then this debate has to happen. These conversations must happen and be explored not just for us here as parliamentarians, but in order for us to go away and say that we have done the best we can.

Question put, That the amendment be made.

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

Daniel Francis Excerpts

Committee stage
Tuesday 25th February 2025 Public Bill Committees

[Naz Shah]

I completely agree with the hon. Member.

Coming back to the physicians who justified eligibility by citing the physical complications of anorexia, not just the mental disorder itself, we know that in all 60 of the cases that have been cited, the person did not have a terminal illness other than the one that was caused by anorexia, because that then fit the definition. Under the Bill, the same could happen here. I say in response to the hon. Member for Richmond Park that eating disorders or substance use disorders could still qualify if a doctor determines that the resulting physical deterioration meets the criteria for terminal illness. I will speak to anorexia in much more detail when we debate a further amendment that I have tabled.

Amendment 181 would also remove references to the Equality Act and the Mental Health Act, and the Bill would not define disability or mental disorder. That raises serious concerns, so I will not support the amendment. I encourage Committee members to strengthen the Bill in this regard and not weaken it. The Acts define mental illness and disability as taking a clear medical model, and again it is not clear whether my hon. Friend the Member for Spen Valley is further suggesting that a new definition should be used—but I am going over ground that I have already been over.

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

The amendments before us have left me in a significant quandary, as some Members are aware. I am concerned that while their proposers are genuinely seeking to improve the Bill, legal loopholes may remain.

Prior to Second Reading, the Equality and Human Rights Commission produced a briefing note on the Bill. It included a section relating specifically to discrimination and equality considerations, which stated:

“It may also particularly impact disabled people. We recognise that this bill is focused on assisted dying for adults who are terminally ill, and does not propose access to assisted dying on the basis of disability or chronic conditions. However, there is not always a clear line between terminal illness and disability. Disabled people can also suffer from terminal illness, and illness may itself amount to a disability. Parliament should note that the exclusion of disability as a standalone criterion for accessing assisted dying does not mean that the rights of, and protections for, disabled people do not need to be considered in relation to this bill.”

I note that amendment 181, tabled by my hon. Friend the Member for Spen Valley, seeks to clarify these matters, but I remain concerned that, with its reference to

“only because they are a person with a disability”,

it would retain the ambiguity that she is seeking to remove. I understand the legal advice that she has received on this matter. My view is that although the amendment would remove the reference to the Equality Act, that Act still sets out that disability is one of the specified protected characteristics. Paragraph A9 of the Government’s guidance on the Equality Act reads:

“The Act states that a person who has cancer, HIV infection or multiple sclerosis (MS) is a disabled person. This means that the person is protected by the Act effectively from the point of diagnosis.”

I remain concerned about this point. I have previously raised my concerns about the language used on Second Reading and, if I had spoken then, I would have raised this point. We have heard throughout the Bill’s passage that being a disabled person does not make someone eligible for assisted dying, but I have just diagnosed three disabilities in the Equality Act that may or may not be eligible under this Bill.

[Danny Kruger (East Wiltshire) (Con)]

The hon. Gentleman is making a very important point, and he picks up the observation by the hon. Member for Bradford West that there is a link, through the Equality Act, with disability. It is absolutely right that we address that. Does he agree that the way to do so is not to accept amendment 181 tabled by the hon. Member for Spen Valley, which would retain the dangerous words “only” and “for the avoidance of doubt”, but to accept amendment 11, which would exclude those words and ensure that someone could not get an assisted death by reason of disability or mental illness? Because of that concern, perhaps we need to table a further amendment to exclude the Equality Act from the operation of this clause, and I await the Chair’s ruling on whether that is possible at this stage. Amendment 181 does not refer to the Equality Act, although the Bill does, so we should follow that point. Rather than accepting that amendment, which would not move us forward, we should accept amendment 11. I hope that that is clear and that it might satisfy the hon. Gentleman’s concern.

[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.

[Lewis Atkinson]

I want to come back to the Bill as drafted. The key factor in clause 2, for me, is the focus on terminality. That is what determines eligibility: that death is reasonably expected within six months. The clauses that we are discussing, subject to amendment, merely clarify—rightly, because this is important, and I too will wait to hear the Government’s guidance—that solely having a disability or a mental disorder does not in itself provoke eligibility. I fear that we are overcomplicating matters; the focus on terminality is in the name of the Bill. It is the Terminally Ill Adults (End of Life) Bill, and that is what we are focusing on today. I urge Members to think about that point when they consider the amendments, including amendment 181 from my hon. Friend the Member for Spen Valley.

--- Later in debate ---

[Tom Gordon (Harrogate and Knaresborough) (LD)]

It is an honour to serve under your chairmanship, Mr Dowd. I speak in support of amendment 234, which is tabled in my name and seeks to ensure that people suffering from neurodegenerative conditions are not excluded from the dignity and autonomy that the Bill seeks to provide. The amendment would extend the eligibility period for those with neurodegenerative conditions from six months to 12 months—a simple yet crucial change that could alleviate needless suffering and ensure fairness in our approach to end of life care.

The intention of the amendment is to change the law to match that in five of the six Australian states. The wording mirrors that found in those jurisdictions. Conditions that would be affected by the change include motor neurone disease, Huntington’s disease, multiple system atrophy, progressive supranuclear palsy, Parkinson’s and many others. Although Alzheimer’s is a neuro-degenerative condition, those with Alzheimer’s would not be eligible for an assisted death should the amendment pass because they would not have the mental capacity.

[Daniel Francis]

Does the hon. Gentleman agree that those with early-stage dementia or Alzheimer’s could pass the mental capacity test in the Mental Capacity Act 2005?

[Tom Gordon]

They would need to come within the definition of a terminal illness. I will come that later in my speech.

We must recognise the reality of neurodegenerative diseases. There are other conditions where prognosis follows a clear trajectory. People with conditions such as MND and Parkinson’s experience a slow but relentless decline. Their suffering can be profound long before they meet the six-month prognosis requirement that is currently in the Bill.

Let us look at some real-life stories. Mary Kelly is a bright and sharp-witted woman from Middlesbrough. Diagnosed with Parkinson’s last year, Mary knows that she faces many years of deterioration. She said:

“It would make the world of difference to know that assisted dying was legal and available. I’d know if I’m not finding joy, I can end it peacefully. It would make the intervening years so much more peaceful, loving, and relaxed.”

Parkinson’s-related dementia affects a third of those with the condition. If Mary loses capacity before a doctor confirms her eligibility, she will be denied the very right that the Bill aims to uphold. If we do not amend the Bill, people like Mary will lose their autonomy precisely when they need it most.

We must also consider the experience of people like Phil Newby, who was diagnosed with MND a decade ago. Phil fought to challenge the UK’s ban on assisted dying, taking a case to the High Court in 2019. He is the last living person who took one of the court cases involving assisted dying. Phil knows that the uncertainty of prognosis leaves too many in limbo. He said:

“People with neurodegenerative diseases often suffer a cognitive decline in the later stages. Twelve months would give a much greater chance for a civilised death to those suffering from the most devastating illnesses.”

We must ensure that those voices are not ignored in this conversation.

Imagine a scenario in which someone with MND applies for an assisted death. They tell their friends, family and loved ones. They begin to make preparations, including signing the written declaration, but they cannot get approval until a doctor says they have six months left. They wait. Their condition gets worse. They suffer choking fits, have feeding tubes fitted, and experience a slow and cruel deterioration. Finally, they receive approval from the first doctor, but before they can get to a second doctor, they begin to lose capacity. They are still suffering. Their family know their clear and settled wish, but they have no chance of a second approval, and especially no chance of approval from a panel. They will be potentially consigned to a death of agony and pain, despite everyone knowing that it is not how they would like to die. Their family must watch on, helpless.

The loss of competency is one of the greatest fears for those with neurodegenerative conditions. The Bill currently states that a person must have full mental capacity at the time of their assisted death, which is an important safeguard. However, people who develop MND can have their decision making impaired, and around 50% experience some form of cognitive decline. In New Zealand, where there is a six-month limit, many people lose their decision-making capacity before they can proceed. By contrast, in Victoria in Australia, where there is a 12-month limit for neurodegenerative conditions, only 7% lose competency. If we do not amend the Bill, we risk condemning those people to a fate they fought to avoid.

We must also recognise the difficulty in predicting life expectancy for those with neurodegenerative conditions. Prognosis is not an exact science. I am fairly sure that everyone agrees on that—people have made those points repeatedly. The Court of Appeal has acknowledged that a six-month prognosis cannot be made with certainty for many terminal illnesses. That is one of the most difficult things that I have had to grasp as part of the Committee. To impose what could seem like an arbitrary threshold on those with unpredictable conditions is unfair and unnecessary.

Moreover, let us look at international examples. Many UK residents who have to travel to Switzerland for an assisted death do not have six months or less to live. If we end up with a six-month limit, we will still see people having to travel to Switzerland or other jurisdictions to ensure that they have access to an assisted death. I worry how people in this country would feel about that —particularly those families who might wish to accompany their loved ones on that journey, with the legal consequences that could follow.

Recent polling shows that two thirds of Brits support an amendment that would allow people with neuro-degenerative diseases access to an assisted death. We know that 85% of people living with multiple system atrophy who gave their views in an MSA Trust survey support such a change in the law. This is not a minor or niche concern. Every year, motor neurone disease alone kills 2,200 people in the UK, which is six people per day. Some 45% of people living with MND say they would consider an assisted death if the law changed. It is not a hypothetical scenario: these are real people, making real choices about how they wish to live and die.

My amendment would not overload the system. Experience from overseas tells us that jurisdictions such as Victoria and other Australian states already have a 12-month system for neurodegenerative conditions, and it works. New Zealand, which maintains a six-month limit, has seen people unable to qualify, and is looking at what it can do to ensure greater access. We must also listen to the written and oral evidence from expert witnesses. Professor Meredith Blake and Chloe Furst testified to the importance of a 12-month eligibility period, not just for fairness but for the practicality of allowing patients to navigate the process in time.

Everyone wants to see a Bill that is about dignity. If it is truly about that, we must ensure that it works for those who need it most. It is not about opening the floodgates or trying to expand the criteria. It is about ensuring equal access. From speaking to colleagues across the Committee, I know that a lot of thought and consideration has gone into this issue. With that in mind, I will not push the amendment to a vote, but it is important that the voices of people with neurodegenerative diseases are considered as part of the process.

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

Daniel Francis Excerpts

Committee stage
Wednesday 26th February 2025 Public Bill Committees

[The Chair]

Will everyone ensure that all electronic devices are turned off or switched to silent mode? Tea and coffee are not allowed in the Committee Room. We will continue line-by-line consideration of the Bill. I gently ask people to abide by my exhortations yesterday.

Clause 3

Capacity

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

I beg to move amendment 322, in clause 3, page 2, line 13, at end insert—

“except that—

(a) for the purposes of an assessment of capacity under this Act, a person must be assumed not to have capacity unless it is established they do have capacity, and

(b) section 1(3) of the Mental Capacity Act 2005 shall not apply.”

This amendment reverses the burden of proof in the Mental Capacity Act, so that those assessing a person’s capacity would not be able to assume that the person has capacity without evidence.

[The Chair]

With this it will be convenient to discuss the following:

Amendment 49, in clause 3, page 2, line 13, at end insert—

“(2) The burden of proof for an assessment of a person’s capacity is the balance of probabilities as required under section 2(4) of that Act.

(3) For the purposes of any such assessment, the principles set out in subsections (2) to (4) of section 1 (The principles) of that Act apply.”

This amendment would set out the burden of proof for capacity assessments as being the same as the Mental Capacity Act 2005 and apply the principles from subsections (2) to (4) of section 1 of the Mental Capacity Act 2005.

Amendment 50, in clause 3, page 2, line 13, at end insert—

“(2) An assessment of a person’s capacity under this Act must include, but is not limited to, an assessment that the person understands—

(a) the options for care and treatment of the terminal illness, including—

(i) the extent of prognostic certainty of their illness or condition, and

(ii) the likely effects on day-to-day functioning, symptom management, and pathway to and experience of death of—

(A) relevant and available care and treatment including palliative care, hospice or other care,

(B) withdrawal or absence of care and treatment, and

(C) requesting assistance in ending their own life under the terms of this Act.

(b) a decision to proceed under this Act does not prevent or make unavailable any care and treatment provision that would normally be provided.

(c) the person’s decision to proceed under this Act must be theirs alone and not bound or directed by the views or decisions of others.

(d) the person is able to change their mind at any stage of the process for requesting assistance to end their own life under the provisions of this Act, regardless of previous decisions.

(e) a decision to proceed under this Act will lead to the provision of a substance that is reasonably expected to end someone’s life following administration and is reasonably expected to be irreversible.

(f) relevant legal consequences from proceeding with a request for assistance to end their own life, including life insurance and categorisation of death certification.”

This amendment would set out certain non-exhaustive requirements for a finding that a person has capacity.

Amendment 398, in clause 3, page 2, line 13, at end insert—

“(2) The following provisions of the Mental Capacity Act 2005 shall not apply to this Act—

(a) sections 1(2) to (4)

(b) sections 2(2) and (4).

(3) Section 2(1) of the Mental Capacity Act 2005 shall apply to this Act as if it read as follows—

‘For the purposes of this Act, a person lacks capacity in relation to a matter if at the material time he is unable to make a decision for himself in relation to the matter.’

(4) A person shall be considered not to have the capacity to make a decision to end their own life unless it is proven beyond reasonable doubt that they do have that capacity.”

This amendment disapplies several principles of the Mental Capacity Act: the presumption of capacity, the duty to help someone reach capacity, the irrelevance of an unwise decision, the application of the balance of probabilities, and the diagnostic test. It retains the functional test of capacity and requires that capacity be proven beyond reasonable doubt.

Clause stand part.

[Daniel Francis]

It is a pleasure to serve under your chairmanship, Mr Dowd. I accept that we had a long debate on issues relating to mental capacity in respect of the amendments tabled by the hon. Member for Richmond Park, but we heard in oral evidence significant representations and concerns regarding how the Mental Capacity Act 2005 would work in connection with assisted dying. The purpose of the amendment is to reverse the burden of proof in relation to capacity.

In general—rightly, as I have said previously—a person is assumed to have capacity unless it is shown that they do not. As we have heard, that is a deliberately low bar in order to preserve the basic human right to participate in society and to ensure that normal daily life does not require us all to prove that we have capacity every time we make a decision. The downside of that assumption, however, is that in situations of limited or unreliable evidence, or a very borderline case, the person has to be assumed to have capacity. It is surely clear that that could put many people into real danger if such an approach were taken with assisted dying.

We should not be afraid to say that a person who is terminally ill is potentially vulnerable. Depression and stress are common and understandable responses to a terminal diagnosis and, whether we like it or not, some people in our society will prey on the fragile for their own gain. Our job is to confront the risk of someone being given access to an assisted death not because that is their considered wish, but because no conclusive evidence is available to the doctors at the time of the assessment, or because someone is controlling or coercing that person and able to persuade them in favour of an assisted death that they do not truly want by hiding any signs of their impaired capacity until it is too late.

On previous amendments, I have spoken from my personal perspective. As parents of a child with a learning disability, our greatest concern is what will happen to our child after we have gone. That is the principal thing—the sole thing, I think—that keeps my wife and me up in the night: what will be that determination for our daughter one day? I hope that her twin will remain with her, and that her twin will be the person who makes those decisions for her, but that may of course not be the case. I know that we may have to entrust the state or others to make those determinations for her in due course.

Every parent of a child with a learning disability considers that determination every day. I know that it weighs on their minds not only in connection with this clause; the decisions about their child will also weigh on their minds when we get to clause 4. I am not talking about my daughter’s case, because she does not have enough capacity, but for those people who do have enough capacity—we know from the evidence that the majority of people with a learning disability do have enough capacity—the decisions that may be made for them in due course will weigh on their minds.

In those circumstances, I suggest it is appropriate and reasonable that the assisted dying process maintains the other principles of the Mental Capacity Act, but reverses the presumption in favour of capacity in order to keep people safe. We have heard that doctors are familiar with the Act, including in cases where people sometimes do and sometimes do not have capacity. On that basis, it is not a great leap for them to look for evidence that a person does have capacity, rather than the opposite. That is a normal exercise of their judgment. It is a compassionate and common-sense approach.

I remind Members of what I have said previously about the position of the Law Society: the issue of what capacity should mean, and how to assess it, is central to the Bill. The Law Society considers that the Bill should be clearer in its approach to capacity for the purposes of ending a terminally ill person’s life. Although expert opinion may reasonably differ on whether to use the Mental Capacity Act approach or to introduce a stand-alone definition, the utmost clarity is required if the Bill’s safeguards are to be robust and effective. The Law Society’s recommendation is that before the clause becomes law, a comprehensive consultation should be undertaken to allow relevant experts to share views on the appropriate definition of capacity for the purpose of the Bill.

I will not quote everything again—I have quoted it all previously—but we have heard oral evidence on this matter, including concerns about how the Mental Capacity Act may be interpreted, from Professor House, through Baroness Falkner, Fazilet Hadi, Dr Hussain, Chelsea Roff, Professor Owen and Dr Price, to Dan Scorer of Mencap. My amendment is a compassionate and common-sense approach that would provide reassurance to members of the public. I invite the Committee to support it.

Amendment 398, tabled by the hon. Member for Reigate, goes further than my amendment, and beyond its scope, but I have some sympathy with it. I will repeat some of what I have said previously, in that I remind the Committee of the statutory principles of the Mental Capacity Act:

“A person must be assumed to have capacity unless it is established that he lacks capacity…A person is not to be treated as unable to make a decision unless all practicable steps”—

that remains a grave concern of mine—

“to help him to do so have been taken without success”,

and a person

“is not to be treated as unable to make a decision merely because he makes an unwise decision.”

I remain happy to stand corrected, as I have continued to ask for clarification on this matter, but my point that doctors or other professionals would have to take all practical steps to help them to make a decision related to assisted death has not been challenged. The matter was clearly considered to some degree previously, given that clause 62 of the Mental Capacity Act 2005 states:

“For the avoidance of doubt, it is hereby declared that nothing in this Act is to be taken to affect the law relating to murder or manslaughter or the operation of section 2 of the Suicide Act 1961…(assisting suicide).”

I also challenge whether the Bill’s authors have considered all the scenarios outlined in chapter 3 of the Mental Capacity Act code of practice, entitled “How should people be helped to make their own decisions?”, and particularly those relating to the involvement of family members and carers. Similarly, in chapter 4, “How does the Act define a person’s capacity to make a decision and how should capacity be assessed?”, the code states at paragraph 4.50:

“For certain kinds of complex decisions (for example, making a will), there are specific legal tests…in addition to the two-stage test for capacity.”

Those tests are laid out, but they do not include this scenario.

As I did yesterday, I refer to the Equality and Human Rights Commission paper provided to Members in advance of Second Reading:

“A vital factor in determining how to manage access to assisted dying will be the concept of mental capacity in the context of a decision of this nature and gravity. It will be important to ensure that all decision-makers involved in the process have a full and clear understanding of the law around mental capacity under the Mental Capacity Act 2005. Sensitive consideration must be given, in particular, to the interaction between mental capacity, mental health issues, learning disabilities and conditions such as autism. Clause 30 of the bill states that the Secretary of State ‘may’ issue codes of practice…However, it does not oblige them to do so.”

For those reasons, I remain concerned about continuing to use the full definition under the Mental Capacity Act 2005. I therefore commend the amendment to the Committee.

[Dr Simon Opher (Stroud) (Lab)]

I thank my hon. Friend the Member for Bexleyheath and Crayford for his sensitive and well presented amendment. I have a couple of things to say about it.

My hon. Friend says that the Mental Capacity Act is a low bar, but in the Act it is important that when we assess people for mental capacity we look at the gravity and complexity of the situation, and therefore take more consideration of deeper understanding of the issues if the gravity of the decision is very enhanced. There is scope within the Mental Capacity Act to take in these types of assisted dying assessments.

[Daniel Francis]

I hear that. There are different decisions, whether it is buying a coffee or seeking an assisted death. Would my hon. Friend concur that, for some individuals in those scenarios who may be by themselves because of the circumstances of their lives and about whose capacity there may be doubt, the doctor must presume in the first instance that they have capacity, and that the doctor must assist them in making a decision?

[Dr Opher]

Yes, I totally accept that. The Mental Capacity Act is set so that we assume capacity and look for evidence of lack of capacity. The great danger with the amendment is that it would change a whole raft of very well used provisions. As Professor Whitty said, the Act is used up and down the country every day; I have used it myself many times, and taught it as well. If we change the emphasis from the presumption of capacity to the presumption of incapacity, which is what my hon. Friend is suggesting, that is a major change in the Act.

--- Later in debate ---

[Naz Shah]

I will pick up on some of the points to which my hon. Friend the Member for Stroud referred, given his expertise. We heard from three senior psychiatrists during the evidence sessions, who were very clear; I have already mentioned much of their evidence. The Royal College of Psychiatrists’ written evidence states:

“It is the RCPsych’s view that the MCA is not sufficient for the purposes of this Bill. Extensive consideration needs to be given to what an assessment of mental capacity should consist of for AD/AS prior to the passing of legislation and, indeed, whether a determination through such an assessment can be reliably arrived at in this novel context.”

It goes on to say that the capacity to end one’s life is “entirely different” from assessing for the capacity of deciding treatment.

The Bill moves us into new territory. We need a definition that meets the criteria of what we are assessing, which is to end one’s life. That has never been applied in this country. The Mental Capacity Act, as it stands, requires assessors to presume that someone has capacity until incapacity can be proven, as my hon. Friend the Member for Bexleyheath and Crayford referred to in moving amendment 322.

Dr Annabel Price, Professor Allan House and Professor Gareth Owen all expressed doubts about the use of the Mental Capacity Act to assess whether a person is in a fit state of mind to undertake assisted dying. Because there is nothing in the current medical assessment that requires careful explanation of these factors, there is a real worry that there will be no opportunity to change them. It is outside the experience of the Mental Capacity Act, the Court of Protection, the associated research and practitioners on the ground.

Professor Owen said:

“I have looked at mental capacity a lot in research, and there is no experience”.

The reference to the Mental Capacity Act in clause 3 puts us into an area where there is no experience of the central capacity issue under consideration. He said:

“It is very important that Parliament be clear-eyed about that.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 226, Q287.]

He further said that we are in “uncharted territory”, because the ideas in the Bill are very novel. That is the hub of the Bill: it requires assessors to assume capacity as a starting point. To make the Bill the safest in the world, that is not the yardstick that we should be applying, according to very senior psychiatrists across the country.

Alex Ruck Keene KC also provided evidence to the Committee. He set out some of the myths in a video. There are a few things in this for me. One is the article in The Telegraph, which senior psychiatrists alluded to, that suggested there was a shortage of specialist psychiatrists. We have already had a conversation about the shortage of judges, but we are now having a conversation about the shortage of psychiatrists. Should the measure remain in the Bill as it stands? I would like to understand from the Minister whether that is something that has been assessed, given that we do not have an impact assessment.

Alex Ruck Keene referred to the National Institute for Health and Care Research, which funded a number of research projects in 2022 under the umbrella topic of implementing the Mental Capacity Act in practice—the rationale being that

“The Mental Capacity Act…is designed to empower and protect people who may lack the mental capacity to make their own decisions about their support and treatment, ranging from everyday issues to more serious, life-changing decisions.”

Evidence has highlighted several aspects of the way that the assessments are being carried out that are not compliant with the Mental Capacity Act. If we already have issues with how the Act is being implemented in the everyday work of the NHS and psychiatrists, how many mistakes will be made if the Bill goes through as it is? How much potential is there for mistakes to be made when assessing the capacity of those who are most vulnerable?

The Care Quality Commission in its most recent “State of Care” report in October last year said:

“The Mental Capacity Act 2005 (MCA) directly affects the lives of millions of people. Everyone providing care to people over the age of 16 must be familiar with this vital piece of legislation, which introduced rights and protections for people who may lack mental capacity. A decade after the House of Lords report, we continue to find a lack of understanding of the MCA among providers.”

That is the most recent research, and it is telling us that we have not got this right.

The Mental Capacity Act was passed over 20 years ago in 2005, but is still not understood properly or being applied for the reasons it was supposed to be. If we have not got that right in 20 years, how can we as a Committee be assured that the legislation will be applied properly when it is applied to something that it has never been applied to before and that has not been tested? How can we say that we should be rejecting an amendment that would change that and raise the bar for people? Ultimately, this affects people who are vulnerable; I will come on to that in more detail in the next group of amendments.

That is a real concern, which is why I urge Committee members to support amendment 322 to get the safeguards right. We spent hours talking about capacity, but the amendments to clause 1 were not accepted. This amendment comes from experience, and I really appreciate the personal experience of my hon. Friend the Member for Bexleyheath and Crayford on this issue, because he speaks about the reality. We are not the experts, and we should be relying on the experts who give us their witness testimony.

[Daniel Francis]

In the evidence from Mencap and in large swathes of the written evidence, we have heard grave concerns from communities representing people with learning disabilities about how this legislation was enacted during covid, particularly with “do not resuscitate” notices. Evidence shows that people with learning disabilities were far more likely to have those placed on them. The written evidence we have suggests that that is due to a misinterpretation of the Mental Capacity Act or bias within the medical community. Can my hon. Friend comment on that?

[Naz Shah]

My hon. Friend makes a very valid point. Another issue that we have not got to yet, but that we will be looking at, is the doctors who do not want to take part in this process. We must consider whether there will be a bias; he is right to point that out. Will there be a subconscious bias towards helping people? My hon. Friend the Member for Stroud suggested earlier that doctors assist a person to reach a decision, according to the Mental Capacity Act. This is the crux of it for me: when a doctor is assisting a person in their best interests to come to a decision about treatment, for example, that is a different test from what we are testing here.

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

Daniel Francis Excerpts

Committee stage
Tuesday 4th March 2025 Public Bill Committees

[Rebecca Paul (Reigate) (Con)]

I rise to speak briefly to amendments 413 and 414, which are very thoughtful and well-considered amendments. I thank the right hon. Member for Dwyfor Meirionnydd for setting out powerfully and persuasively the importance of the subject. I support the amendments, but in reality we probably need to go further by specifying exactly who would be interpreting and making sure that it is regulated reliably. We do not want just anyone coming in off the street and doing that. That would not be appropriate, so we need to think about whether we need to go further. However, the amendments are a great starting point and would move us closer to where we need to be.

There is much subtlety in this debate. We talked a little in the first week of this Committee about the importance of language and the words that are used. We always need to be cognisant that when we are imparting information to people, particularly in a healthcare context, it is vital that we use language that people understand so that the ramifications of what is being discussed are clear. That is where these amendments become really important, because for those for whom English is not their first language, some of the subtlety and nuance around what a term means could be lost. Interpreters could be an important part of adding the clarity required to ensure that everyone going through the process understands exactly what it involves.

A 2024 Nuffield Council on Bioethics survey found that 39% of people think that assisted dying means withdrawing life support, 19% think that it means providing people who are dying with drugs that relieve symptoms of pain or suffering, and 13% think that it means providing hospice care. That echoes our debate a couple of weeks ago about how assisted dying can be interpreted in quite a few different ways. It is really important that we are clear in the language we use and what we mean by it.

We also find that among ethnic minorities there is sometimes a greater misunderstanding about palliative care. A 2024 King’s College London survey found that 6% of people believe that it is accurate that palliative care involves giving people medicines in order to shorten their life, but 18% of ethnic minority groups think that. We need to be cognisant of that. While 18% of people trust healthcare providers “not very much” or “not at all” to provide high-quality care towards the end of life, that figure increases to 30% for ethnic minority groups. While 6% of people say they have not heard of palliative care, that increases to 22% of people in ethnic minority groups.

It is important to recognise that the text of the amendment is much less stringent than that of section 7 of South Australia’s Voluntary Assisted Dying Act 2021, which strictly regulates interpreters. That goes back to my initial point. Under the South Australian law, they must be

“accredited by a prescribed body”.

They cannot be a family member, cannot stand to benefit from the will and cannot be involved in the patient’s healthcare. It is really important to ensure that a recognised professional is involved in this most important of processes and information sharing.

I support the amendments, although I think they need to go a little further. I look forward to hearing what other hon. Members have to say.

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

I echo the points that have been made about the importance of the initial conversations, particularly for those who do not have English as their first language. I made a commitment to my hon. Friend the Member for Ipswich that in his absence I would press amendments 414 and 415 to a Division, as he requested.

I support the general principles of the amendments relating to those who are seeking or who need interpretation to explain aspects of assisted dying to them. I support the merit of that principle and the intention behind amendments 414 and 415.

[Naz Shah (Bradford West) (Lab)]

Like the right hon. Member for Dwyfor Meirionnydd and the hon. Member for Reigate, I will not press the amendments to a vote, but I certainly want to speak to them. I do not think that they go far enough. Let us put ourselves in the position of people of colour: if the English language is seen as superior to or more powerful than Welsh, that means an extra layer of intervention that I do not think the amendments quite capture. We have not even talked about British Sign Language in our discussion of languages, but it is also really important.

I am a qualified interpreter from Urdu to English—in health, funnily enough—and I can tell the Committee that in Urdu there is not even a word for depression. The word for depression does not exist. In a previous life I chaired the largest mental health charity outside London for ethnic minority communities, and I am a former NHS commissioner, so when we talk about health inequalities and patient intervention, I understand acutely the nuances involved in translating from one language to another.

In the first instance, there is a language that someone does not understand. In the second instance, particularly for minority communities who speak languages from the south Asian subcontinent such as Punjabi, Urdu or Hindi, the words do not exist to translate the Bill literally or to talk about assisted death. That speaks to the point that the hon. Member for Reigate made about understanding what it means. I have the same stats that she cited, which show that people do not understand what assisted death is.

I would really value a response from the Minister and from my hon. Friend the Member for Spen Valley to these questions about the nuances of having such a difficult conversation. These are really brave conversations, both on the doctor’s side and on the patient’s. Take a woman from an ethnic minority background whose first language is not English and whose doctor is unable to translate their conversation with her. Would that conversation be disempowering? Would it be empowering? Would we be doing a disservice to that person, with the best will in the world from the doctor? I really would like to understand what consideration is being given to making this accessible, if it is to be a service and a piece of legislation that is open equally to all.

I have mentioned this point a few times and have raised it with the Minister, and I appreciate that the Minister has responded, but this is where my frustration—for want of a better word—comes from about not having an impact assessment in the first place. If we had had an impact assessment, the Government would have looked at these things. Even with small Bills, we go out to consultation for weeks and weeks. With this Bill, we have not spoken to anybody during Committee stage about the nuances of the provisions on languages and what they will mean for patients. Although I support the essence of what the amendments are attempting to achieve, they fall short of providing the necessary protections. I do not know how the Government will address that.

--- Later in debate ---

[Lewis Atkinson]

I do not disagree with my hon. Friend. I gently say that the GMC guidance specifically references that Act, so that is what I was referring to.

I am pleased to see amendment 341, which I believe would bring the legislation into line with that GMC guidance, ensuring that removing the duty to refer would absolutely not be a licence for people to be left without access to care. The GMC is very clear, as the hon. Member for Reigate said, that people must be given sufficient information and be empowered to seek the options and information that they need. Therefore, I am pleased to support the amendment.

[Daniel Francis]

It is a pleasure to serve under your chairmanship, Mr Dowd. I note that my hon. Friend the Member for Spen Valley has said that she is minded to accept amendment 341. I will, however, still briefly speak to amendment 338 and new clause 13, which stand in my name.

The British Medical Association has said that it strongly urges MPs to support the amendments, which would remove the referral requirement in relation to preliminary discussions and establish an official body to provide factual information to patients about the range of options available to them. As the hon. Member for East Wiltshire mentioned, Dr Green, in his oral evidence, said:

“The provision of information would be very useful, because in a situation where a doctor was unwilling to have an initial discussion with the patient, it would provide a way for the patient to get that information that was in no way obstructive.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 46, Q37.]

He went on to say:

“I do not believe that it is ever appropriate for a doctor to recommend that a patient goes through an assisted dying process.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 48, Q40.]

He also said:

“The word “referral”, to a doctor, means writing a letter or communicating with another doctor to see, but some doctors would find themselves not able to do that. For that reason, we believe that there should be an information service for the doctor to direct to.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 48, Q41.]

The BMA’s position is that the proposal is analogous to doctors’ professional legal obligations regarding abortion, and consistent with the Bill’s inclusion in clause 23 of a right to refuse, for any reason, to carry out activities directly related to assisted dying. It has said:

“In tandem, we believe creating an official body to provide individual information and advice to patients, to which doctors could direct (rather than refer) patients, would ensure that the doctor’s views are respected, whilst also—crucially—ensuring that patients can easily access the information and support they need. Currently, whilst the Bill acknowledges the need for accurate, impartial information and advice for patients, it gives no indication of how this might be delivered—generic published information would not be sufficient. Patients would need individual advice, guidance, and support so that they can make informed decisions, and an independent information service could meet this need.”

As the hon. Member for Reigate mentioned, a member of the Royal College of General Practitioners also said:

“The BMA referred to the word “refer”—referring to a colleague, for those who did not want to do it. We agree that signposting is a better process.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 279, Q365.]

He went on to say:

“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.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 30 January 2025; c. 273, Q354.]

Therefore, I commend amendment 338 and new clause 13 to the Committee.

[Naz Shah]

It is a pleasure to follow my hon. Friend the Member for Bexleyheath and Crayford. I rise to speak to amendment 287, tabled by my hon. Friend the Member for York Central. Clause 4(5) currently says:

“A registered medical practitioner who is unwilling or unable to conduct the preliminary discussion mentioned under subsection (3) must, if requested by the person to do so, refer them to another registered medical practitioner whom the first practitioner believes is willing and able to conduct that discussion.”

If this amendment was to be adopted, it would read:

“A registered medical practitioner who is unwilling or unable to conduct the preliminary discussion mentioned under subsection (3) must, if requested by the person to do so, refer them to another registered medical practitioner who is qualified to undertake such a preliminary discussion, and set out palliative medicine options to provide the patient with appropriate end of life care, including referring them to a palliative medicine expert.”

Put simply, the amendment would mean that if a doctor met with a patient with a severe illness who might die within six months, but the doctor was themselves unwilling to have an initial discussion on assisted dying, they would still have to refer the patient on to a doctor who was willing to have that discussion. The patient’s decision to explore assisted dying would not be obstructed; the main change would be that that doctor would now have to discuss palliative care options with the patient. That is surely a measure that would increase the patient’s welfare.

Let us think about the kind of patient who can apply for assisted dying. They must have a diagnosis of a serious illness and a prognosis that they are likely to die within six months. The Bill’s supporters have said many times that they are worried about any changes that will reduce the autonomy of people seeking assisted death. This amendment quite obviously does not in any way reduce people’s autonomy, nor does it in any way place an unreasonable burden upon doctors. If a patient has a diagnosis of a serious illness, and if they have themselves asked for a conversation on assisted dying, then it surely must be good practice for that doctor to discuss palliative care options.

It is also only good practice that one of those options would be for the doctor, if the patient wishes, to refer the patient to a palliative medicine specialist who is more able to talk about such options. That means that the amendment would not place any undue burden on either the doctor or the patient. The doctor ought to be offering such advice on palliative care. The patient may or may not decide to take the doctor’s advice on palliative care, but they have had it, and the patient may well benefit from having had advice on palliative care.

Given the conversations we had this morning, I can foretell one objection to this amendment: that since good doctors will do this anyway, it is unnecessary to have a provision on the face of the Bill to ensure it. This seems to me a very weak objection. Let us be honest, the doctors that we have in this country are of extremely high quality. They are dedicated, skilled and compassionate men and women. We are lucky to have them, but we cannot say that every doctor participating in all the processes that they currently undertake always follow best practice.

Similarly, we simply cannot say that in any assisted dying process doctors will always automatically follow best practice. People make mistakes. That includes people who are highly trained and extremely compassionate. I would be astonished if we could find a doctor who said they had always got everything right. As lawmakers, we have to guard against the fact that even some of our most admired professionals can and sometimes will make mistakes. One way that we will guard against that is to set out duties that they have to follow. This amendment does just that.

I hope that we will not hear the objection that we have heard to a great many good amendments: that it will somehow make the Bill more dangerous by adding complications. The amendment simply adds a small step, by placing a duty on a doctor to give palliative care advice to a patient with a diagnosis of serious illness. Surely the Bill cannot be so lacking in robustness that such a small change would make it dangerous.

In summary, the amendment is a sensible change. It would in no way block the ability of adults who meet the conditions set out by this Bill to explore assisted dying, nor would it place any burden at all upon doctors. It would simply place upon them a duty to follow what we can all surely agree is best practice, and it would greatly improve the early access to palliative care advice for patients with a diagnosis of serious illness. That would improve those patients’ chances of receiving good palliative care. I therefore urge hon. Members to support the amendment.

--- Later in debate ---

[The Chair]

For Members’ benefit, as we are coming towards the end of the debate, let me say that I want people to be able to express their opinions as widely as possible, but it is also my responsibility as the Chair to ensure that that is contained within the parameters of our rules of debate.

[Daniel Francis]

Thank you for letting me speak, Mr Dowd. I will be brief.

As we reach the end of our debate on clause 4, I regret some of the decisions that we have made. I welcome the fact that in due course we will discuss amendment 418, in the name of my hon. Friend the Member for Spen Valley, which also relates to the preliminary conversation. My concern remains that it is “a” preliminary conversation, not, in my determination, “the” preliminary conversation. My amendments would have meant that “the” preliminary conversation could not be held before someone is 18. As I read amendment 418, someone could have preliminary conversations before they are 18; it is just that it will be recorded that there was a preliminary conversation after they turned 18. I regret that, as clause 4 now stands, the paperwork and initial discussion must be completed after someone is 18, but that will not necessarily apply to a preliminary conversation.

Equally, I have some regrets in relation to learning disability issues. I welcome the commitment from my hon. Friend the Member for Penistone and Stocksbridge on the amendment that she aims to bring forward, but I am conscious that it is not on the amendment paper for everybody to see. Just as she committed to work with me, I will continue to work with her on bringing it forward.

We have debated clause 4 long and hard, but I do believe that we have a clause that has loopholes in relation to people under 18 and to people with learning disabilities and autism. I will not press it to a Division, but I regret the fact that we have reached this place.

Question put and agreed to.

Clause 4, as amended, accordingly ordered to stand part of the Bill.

Clause 5

Initial request for assistance: first declaration

[Sarah Olney (Richmond Park) (LD)]

I beg to move amendment 271, in clause 5, page 3, line 5, at end insert—

“(1A) A person may not sign a first declaration within six months of being diagnosed with a condition which meets the requirements of section (2)(1)(a) unless they have received a psychosocial intervention in relation to their diagnosis with that condition.

(1B) The Secretary of State may, by regulations, create exceptions to the provisions of subsection (1A).

(1C) Regulations under subsection (1B) are subject to the affirmative procedure.”

This amendment would create a requirement that the person must have received a psychosocial intervention if a terminal diagnosis was received less than six months ago. The Secretary of State would be given a delegated power to create exceptions to such a requirement with regulations subject to the affirmative procedure.

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

Daniel Francis Excerpts

Committee stage
Wednesday 5th March 2025 Public Bill Committees

[Rachel Hopkins (Luton South and South Bedfordshire) (Lab)]

It is a pleasure to serve under your chairship, Mr Dowd.

I rise to speak in support of amendment 185, in the name of the hon. Member for Spen Valley, the Bill’s promoter, regarding training requirements that need to be made by regulation. It would place a duty on the Secretary of State to make regulations about training qualifications and experience required in order to act as a co-ordinating doctor. Similarly, amendment 186 says that the regulations should specifically include training relating to the assessment of capacity and assessing whether a person is being coerced or pressured by any other person. Proposed new subsection (3C), introduced by amendment 186, would make provision that

“the required training, qualifications or experience is to be determined by a person specified in the regulations.”

In making those regulations, reflection of expertise is vital. We heard from many experts who gave us evidence about the importance of training, development and mentorship, which we would expect to see covered in the regulations. Placing those requirements in regulations would mean that they could be developed through consultation with experts and stakeholders, after gaining a wide range of feedback. It would also future-proof the requirement of any training to be developed and strengthened through future experience.

As part of the safeguards in the Bill, the key principles around assessing capacity and potential coercion are really important. I am therefore minded to press the hon. Member for Spen Valley also to support amendment 20, in the name of my hon. Friend the Member for Lowestoft (Jess Asato), which states:

“Regulations under subsection (3)(a) must specify that training in respect of domestic abuse, including coercive control and financial abuse is mandatory.”

That would provide further clarity, and would further strengthen training on assessing coercion in all senses of the word as part of the safeguards, which many Members, even in the earlier debates, have said that it is so important that they see. I agree, and I hope that the promoter of the Bill will support amendment 20.

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

I rise to speak to the amendments in my name—namely, new clause 12 and amendments 336, 337 and 335. Yesterday, we spoke about the evidence we received from the British Medical Association. I accept that there is some crossover between my amendments and the amendments of the Bill’s promoter, my hon. Friend the Member for Spen Valley, on training.

The British Medical Association stated, with regard to my amendments:

“We strongly urge MPs to support these amendments which would define the ‘training’ explicitly in the Bill as specialised training to provide assisted dying, undertaken by those who opt in…We have been vocal that the Bill should be based on an opt-in model…during the Committee’s oral evidence sessions. Reinforcing this, we believe NC12 and Amendments 335-337 would make two important aspects of this provision in the Bill clearer:

1. That providing assisted dying is not, and would not in the future, be expected of all doctors—the Bill’s current all-encompassing reference simply to ‘training’ does not preclude this training being prescribed as standard general medical training via the regulations, in which case it would apply to all doctors and make the opt-in redundant. Specifying that it is ‘specialised’ training on the face of the Bill, and making clear that there is no obligation on doctors to undergo the training, would safeguard the opt-in model in the Bill’s first principles.

2. That only those who undergo specialised, tailored training on assisted dying could provide the service – during the oral evidence sessions, there has been much discussion about the importance of specialised training for those who opt in to carry out the service. Specialised training for those providing the service is essential for doctors and provides additional protection and safeguards for patients—it should be explicitly referenced in the Bill.”

We heard in our oral evidence sessions from others, including Dr Ahmedzai, on the need for training. He said:

“I personally believe that it would be advantageous if there was formal training, as Dr Clarke has mentioned, specifically to have the kinds of conversations that we now talk about, such as about psychological issues and suicidal tendencies.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 69, Q82.]

I now turn to two amendments in my name: amendment 340 and amendment (a) to amendment 186. Both amendments relate to training for those with learning disabilities and autism. We had a similar discussion on a previous clause, and I know that further amendments are likely to be tabled on the matter, but as I said yesterday, they are not currently on the amendment paper.

I heard and welcome what my hon. Friend the Member for Luton South and South Bedfordshire has said about amendment 20. Putting that training in the Bill is hugely important, and I believe the same is true in relation to training for those with learning disabilities and autism, as set out in to amendments 340 and amendment (a) to amendment 186, particularly given my concerns and those of others about whether we end up with clause 3 relating to the Mental Capacity Act 2005.

[Dr Marie Tidball (Penistone and Stocksbridge) (Lab)]

I thank my hon. Friend for his amendments, and I agree with their principle. My concern is that, again, people with mental disorders are left out. Does he agree that, if there were a way to amend the Bill later so that they could be incorporated in these proposals, that would be a positive step forward?

[Daniel Francis]

I would welcome that as a positive step forward—I think there is probably still some work to do in that regard. My hon. Friend and I will have conversations on the wording of that future amendment, but at the moment we are discussing the amendments that stand before us. Any future amendments that may be tabled are not for us currently to consider.

[Dr Tidball]

As my hon. Friend knows, I have a great deal of respect for him, so I gently say that if he brings forward similar amendments later in the Bill, I would be delighted to talk to him and I ask him to include mental disorders.

[Daniel Francis]

I hear that, and I think my hon. Friend and I are on the same page on many of these matters. I think there were some drafting issues when I discussed amendments with Mencap at an earlier stage.

I commend to the Committee the six amendments in my name in this group: new clause 12 and amendments 336, 337, 335, 340 and amendment (a) to amendment 186.

[Danny Kruger (East Wiltshire) (Con)]

I want to quickly indicate my support for the amendments tabled by the hon. Member for Bexleyheath and Crayford, amendment 290 in the name of the hon. Member for York Central and amendment 20 in the name of the hon. Member for Lowestoft about specific training on domestic abuse and coercive control.

I will now speak to my own amendments, which would require there to be a preliminary discussion before the signing of the first form. At the moment, the Bill allows someone to make the first declaration and state, “I wish to be provided with assistance to end my own life”, without any preparatory discussion about what that entails. It is significant that we heard evidence from Professor House—a professor of old-age psychiatry—that the preferences of the person doing the assessment can bias the capacity assessment. As he explains, we are much more likely to declare that somebody has capacity when they say they want to have the treatment we are offering them, but can we really be sure that the request is freely made and reflects the patient’s wishes?

The fact is, we still do not know from the framework of the Bill how the process would be implemented, but the assessor is likely to be one of a small number of doctors who are willing to do this work on the NHS or somebody who is working for a private provider. Research suggests that the assessing physician’s own personal values and opinions may bias their judgment of a person’s mental capacity. Effectively, research says that the doctor will say that a person has capacity for treatment when he or she wants them to have it or believes that they should. That is significant.

We see from other jurisdictions that the assessment process can quickly become a tick-box exercise in which proper consideration is not given to what might be going on behind the declared wish. In Oregon in 2023, only three people were referred for a psychiatric evaluation by the assessing doctor—down from 33% of people in the early years. It is clear that evaluators have become less cautious when they come to sign the initial paperwork. In California, less than 1% of patients requesting an assisted death are referred for a mental health assessment. These are significant warning signs for us.

I am aware that the hon. Member for Spen Valley has tabled a helpful amendment—amendment 419—to clause 6, which is the clause dealing with the requirement for proof of identity. As I said yesterday, this retrofits a requirement for a preliminary discussion before the process can proceed. It is good that the hon. Member recognises the point that a proper preliminary assessment must be done before the declaration is signed, but I simply do not understand why that should be in clause 6; surely it should be in one single, consistent place, here in clause 5, relating to when the co-ordinating doctor first meets the patient to witness their form. I hope we might recognise that if the principle is being conceded by the amendment tabled by the hon. Member for Spen Valley, we should put that change into its rightful place.

It is worth nothing that at the moment someone could get a proxy to sign for them. The proxy does not need to know the patient or be known to them; they just need to be a person of good standing in the community. They need to undertake no training at all. We have been talking during in this debate about the importance of training, but the proxy who signs on the patient’s behalf does not need to have any training to inform the judgment that they are

“satisfied that the person understands the nature and effect of the making of the declaration”.

Frankly, a stranger to the person, who is not a medic, can sign that declaration on their behalf. At the moment, they can do so without a preliminary discussion taking place. It is only after making that crucial declaratory statement that the co-ordinating doctor discusses the person’s diagnosis. I welcome the tabling of amendment 419, but I think it is in the wrong place. If we do not ensure that that preliminary discussion takes place when we are debating this group of amendments, it might be too late if amendment 419 does not pass, or if it is unsatisfactory, as I think it is.

There is another related problem. Amendment 419 would allow the co-ordinating doctor to confirm that a preliminary discussion has taken place. That means that the discussion could have taken place before the first declaration—in a sense, that is welcome, because that discussion should be taking place—but it does not have to take place with the co-ordinating doctor. The co-ordinating doctor, who is taking responsibility for the whole process of the assisted death for this patient, is not required to have this preliminary discussion themselves. They are not required to go through the very important process of properly discussing the assisted death and informing the patient of what it entails and what the other options are.

My amendment 359 would enhance the significance of the preliminary discussion. It would mean that the doctor who witnesses the declaration—who co-ordinates the process of the assisted death—has had the fullest possible discussion with the patient, and that they genuinely take responsibility for guaranteeing that the patient is fully informed and aware of all of their options. I urge the Committee to support these amendments as well.

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

Daniel Francis Excerpts

Committee stage
Wednesday 5th March 2025 Public Bill Committees

[Danny Kruger]

I understand, but it would be interesting to know whether the Government have produced a delegated powers memorandum, and when it will be published.

I have four quick points to make about my concerns about the amendments and new clause 8. First, new clause 8 provides that when making the SIs, the Secretary of State must consult the Equality and Human Rights Commission. That is a very positive step, but the other provisions on who should be consulted are, on closer inspection, illusory. The Secretary of State must consult those with expertise on capacity and coercion—that is all great—unless he or she considers that

“it would not be appropriate”.

What the new clause gives with one hand, it takes with the other. It would be good to identify in the Bill who the groups are that the Secretary of State must consult for each power.

Secondly, the vast majority of the SIs made under the Bill, as amended by the amendments, are to be made by the negative procedure. The last time that an SI subject to the negative procedure was annulled by the House of Commons was 1979. The procedure gives only the outward appearance of involving Parliament again. The SIs take effect when signed by the Minister, subject only to a motion of either House to annul them. However, by strong convention the Lords will do no such thing, and the convention in the Commons is that the Government will make time to debate such a motion only if it is put forward by the Opposition Front Bench, and it is at the Government’s discretion.

This being a matter of conscience, it is unlikely that any Opposition Front Bench would be in a position to table such a motion, and no one else has any standing. In practice, that means that there will be no opportunity for parliamentary scrutiny on, which lethal substances may be approved, for example, or on what events should be notified to the chief medical officer. These are not mere details.

Thirdly, on some of the matters addressed in the amendments it is doubtful whether the use of delegated powers is even appropriate, because even if there is a debate and a vote in Parliament, debate on an SI is limited to 90 minutes only and an SI is not amendable. In fact, the House of Lords Delegated Powers and Regulatory Reform Committee considered it improper that the Assisted Dying Bill introduced by Baroness Meacher gave the power to the Secretary of State to decide which substances should be allowed to cause death, because it was an inappropriate question for an SI.

Finally, and perhaps most substantially, clause 32 will establish a vast Henry VIII power. It allows Ministers even to amend primary legislation, and those changes would be subject to a simple yes or no vote in the Commons, without the possibility of amendment. It has been suggested in the Hansard Society podcast with the drafter of the Bill that the power is there because provision on the NHS could be made only if section 1 of the National Health Service Act were modified, removing the duty of the Secretary of State to improve the “physical and mental health” of the public. I look forward to seeing whether the amendments that have been promised include that. However, they will not necessarily amend the National Health Service Act, because that could be done under the statutory instruments created in these amendments.

If such a foundational piece of legislation as the National Health Service Act needs to be modified to allow this law to pass, surely it would be better to do it on the face of the Bill. I want to know why a Henry VIII power is needed. I hope that the Government might bring forward the relevant amendments to the Bill so that a Henry VIII power is not needed. I see that the hon. Member for Spen Valley is nodding, which is encouraging.

I stress that the Committee must bear it in mind that this power would exist on the statute book forever, unless the statute is repealed, so any Government could use this power. The last time that a Parliament found its voice to reject an SI by the negative procedure was back in the 1970s. When we come to a decision on amendment 233 and new clause 8, I will seek to make further amendments.

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

It is a pleasure to serve under your chairship, Mrs Harris. It would be remiss of me not to comment briefly on new clause 8, given that throughout this process I have consistently raised issues around evidence given by the Equality and Human Rights Commission, and given that new clause 8 states that before making a recommendation the Secretary of State must consult the commission.

I remind hon. Members that the commission has told us that it strongly recommends that

“at the earliest opportunity, Parliament is provided with further information and assurance about the bill’s compatibility with equality and human rights.”

It went on to say that its concerns were that the Bill

“may also particularly impact disabled people. We recognise that this bill is focused on assisted dying for adults who are terminally ill, and does not propose access to assisted dying on the basis of disability or chronic conditions. However, there is not always a clear line between terminal illness and disability. Disabled people can also suffer from terminal illness, and illness may itself amount to a disability.”

It has also stated:

“A vital factor in determining how to manage access to assisted dying will be the concept of mental capacity…It will be important to ensure that all decision-makers involved in the process have a full and clear understanding of the law around mental capacity under the Mental Capacity Act 2005.”

I welcome new clause 8, which is in the name of my hon. Friend the Member for Spen Valley, as it would ensure that the Equality and Human Rights Commission is consulted. We await its comments, which hopefully we will have before Report, on whether the concerns that it raised, both in writing before Second Reading and in their oral evidence, have been allayed. However, I welcome this initial commitment, and we will see where that brings us on Report.

--- Later in debate ---

[Naz Shah]

I beg to ask leave to withdraw the amendment.

Amendment, by leave, withdrawn.

[Daniel Francis]

I beg to move amendment 347, in clause 7, page 4, line 4, leave out from “to” to the second “the” in line 5 and insert—

“ensure that steps have been taken to confirm that”.

This amendment would remove the emphasis on the role of the coordinating doctor in making these assessments.

[The Chair]

With this it will be convenient to discuss the following:

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

“based on provided evidence that”.

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

Amendment 14, in clause 7, page 4, line 15, at end insert—

“(2A) The coordinating doctor must take the report required under subsection (2B) into account in making an assessment under paragraph (2)(b), (f) and (g).

(2B) One or more qualified persons must have conducted a separate interview with the person and made a report to the coordinating doctor on the matters specified in subsection (2C).

(2C) The matters that must be covered in the report required under subsection (2B) are—

(a) any evidence of duress or coercion affecting the person’s decision to end their life,

(b) any difficulties of communication with the person interviewed and an explanation of how those difficulties were overcome, and

(c) the capacity of the person interviewed to understand the information given to them under paragraph (9)(2), (b), (c) and (d).

(2D) A person shall be taken to be qualified to conduct an interview under subsection (2B) if that person—

(a) is a registered medical practitioner who—

(i) is registered in the specialism of psychiatry in the Specialist Register kept by the General Medical Council, or

(ii) has such training, qualifications and experience as the Secretary of State may by regulations specify,

(b) has not provided treatment or care for the person being assessed in relation to that person’s terminal illness,

(c) is not a relative of the person being assessed,

(d) is not a partner or colleague in the same practice or clinical team as the coordinating doctor,

(e) did not witness the first declaration made by the person being assessed, and

(f) does not know or believe that they—

(i) are a beneficiary under a will of the person, or

(ii) may otherwise benefit financially or in any other material way from the death of the person.

(2E) Before making regulations under subsection (2D)(a), the Secretary of State must consult such persons as they consider appropriate.

(2F) Regulations under subsection (2D)(a) are subject to the negative procedure.”

This amendment, and its consequential and linked amendments (15, 16, 17, 18 and 19), would provide for an independent assessment, via an interview conducted by a specialist, of a person’s capacity to make the decision to end their own life, their clear, settled and informed wish to do so, and that they have made the first declaration voluntarily and without coercion.

Amendment 15, in clause 8, page 4, line 38, at end insert—

“(2A) The independent doctor must take the report required under subsection 7(2B) into account in making an assessment under subsections (2)(b)(d) and (e).”

This amendment is linked to Amendment 14 and requires the independent doctor to take into account an assessment that would be required under that amendment.

Amendment 16, in clause 8, page 5, line 16, at end insert—

“or conducted the interview under subsection (7) (2B)”.

This amendment is linked to Amendment 14 and ensures that the independent doctor cannot be the same person who undertakes the assessment that would be required under that amendment.

Amendment 284, in clause 9, page 6, line 27, leave out from beginning to “refer” in line 28 and insert “must”.

This amendment would require a referral for the purposes of assessing capacity for both assessments.

Amendment 17, in clause 9, page 6, line 27, leave out paragraph (b).

This amendment is consequential on Amendment 14.

Amendment 6, in clause 9, page 6, line 27, leave out “may” and insert “must”.

This amendment would require the assessing doctor to refer the person being assessed for a mental capacity assessment if the assessing doctor had doubt as to the person's capacity.

Amendment 280, in clause 9, page 6, line 27, after “assessed” insert—

“or,

(ii) the person has a mental health condition;”.

Amendment 370, in clause 9, page 6, line 29, leave out

“registered in the specialism of psychiatry”

and insert—

“a practising psychiatrist registered in one of the psychiatry specialisms”.

This is a drafting change.

Amendment 18, in clause 9, page 6, line 32, leave out “or (b)”.

This amendment is consequential on Amendment 14.

Amendment 19, in clause 9, page 6, line 34, leave out “or (b)”.

This amendment is consequential on Amendment 14.

[Daniel Francis]

I will not press amendment 347 to a vote, but I will speak to it, and to this group of amendments.

First, I shall turn to amendments 14 to 19, tabled by my hon. Friend the Member for Hackney South and Shoreditch (Dame Meg Hillier), which would require a co-ordinating doctor to refer the patient to an independent psychiatrist, or someone else qualified, as decided by the Secretary of State. That practitioner would then produce a report that the co-ordinating doctor must take into account when assessing whether the person has capacity, has a clear, settled and informed wish to end their life, and has not been coerced or pressured.

These amendments would replicate the existing practice of assessment for living organ donors. If we use a psychiatrist’s assessment for those who are donating an organ—a serious decision—how much more serious is this decision to end one’s life, and how much more necessary is the psychiatric assessment? It feels illogical to offer psychiatric assessments to patients who may donate organs, but not to those who may end their life. The wording of these amendments mirrors the regulations that have been applied through the Human Tissue Act 2004 (Persons who Lack Capacity to Consent and Transplants) Regulations 2006.

For organ donation, there is a separate body—the Human Tissue Authority—which oversees the network of assessors. These amendments do not suggest a separate body for assessors in the context of assisted dying, instead suggesting that the assessor should be a registered psychiatrist or someone qualified, as decided by the Secretary of State. This ensures control over who can be an assessor while also being flexible.

My hon. Friend the Member for Spen Valley, the Bill’s promoter, said in oral evidence that she had looked at the model of assessment for capacity and coercion that is used for living organ donation, so I will be interested, when we get to that point of the debate, to know why the Bill does not model its assessments on those that are already done for organ donation.

These amendments would strengthen the Bill by ensuring that patients are properly assessed as having capacity to make such a huge decision and would help to spot coercion. As it stands, the Bill has no mention of the doctors giving assessments having psychiatric specialisms. These amendments would ensure that a specialist meets the patient, which is vital. We have heard already how difficult it can be to spot coercion, especially repeat coercion.

[Sean Woodcock (Banbury) (Lab)]

Given that this is a significantly more serious decision than organ donation, these amendments would seem a very appropriate change to consider.

[Daniel Francis]

I agree. An assessment by a specialist would protect patients and give another opportunity to spot coercion—something that we all want to safeguard against.

I welcome the acceptance of amendment 20, tabled by my hon. Friend the Member for Lowestoft (Jess Asato), ensuring that doctors will be better trained to spot these issues, but that is only the start. We need the same in-depth assessment that living organ donors would get. Patients must fully understand the decision they are taking, and doctors must be convinced that they are capable of making it.

For organ donation, the NHS recommends that potential donors meet a mental health professional at an early stage, particularly in cases where people have a history of mental illness. As we have already noted, those diagnosed with terminal illnesses are likely to also have mental health issues. Dr Sarah Cox, in her oral evidence, cited a study by Professor Louis Appleby, the Government’s suicide prevention adviser. Dr Cox said:

“If we look at the evidence of suicide, we know that it is increased in people with serious illnesses.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 82, Q105.]

[Sojan Joseph]

We have discussed this issue many times. Within the Bill there is a provision for clinicians to refer to a psychiatrist if in any doubt. Does the hon. Member think that having that conversation at an earlier stage would be beneficial, rather than at a later stage?

[Daniel Francis]

I agree with my hon. Friend about the number of amendments in this vein, but clearly the amendments suggested by my hon. Friend the Member for Hackney South and Shoreditch bring us into line with existing regulations. In her evidence, Dr Cox said:

“If we look at the evidence of suicide, we know that it is increased in people with serious illnesses, but it is actually increased in the first six months after diagnosis, not in the last six months of their lives, so it is about the trauma of the diagnosis.”––[Official Report, Terminally Ill Adults (End of Life) Public Bill Committee, 28 January 2025; c. 82, Q105.]

It is likely, therefore, that those diagnosed with a terminal illness will experience mental distress that could affect their capacity to make a decision about an assisted death. In her written evidence, Dr Virginia Goncalves, a retired clinical psychiatrist with over 30 years of experience in the NHS, writes:

“In my consultant psychiatrist role, I have encountered many desperate and suicidal patients wanting to end their lives after struggling with longstanding mental distress, who could have easily sought the option of assisted suicide if it had been available to them! But however depressed and hopeless they felt, with a compassionate and hope filled approach from their care givers and the correct medical and psychological treatment, the vast majority recovered enough to be able to have a ‘life worth living’. In so many cases, these patients have thanked me later for not giving up on them! Not once have I heard anyone say ‘you should have let me die when I wanted to do it’.”

A meeting with a psychiatrist or other psychological specialist will protect people who may otherwise not have chosen assisted dying. I emphasise again that we already ensure that patients who will donate an organ have this assessment, so why not those seeking an assisted death? We must protect vulnerable terminally ill people from being coerced into assisted death, and psychiatrists and other specialists are best placed to spot that. That is why the assessment is included for living organ donation.

[Naz Shah]

Does my hon. Friend agree that this is a safeguard that would actually strengthen this Bill, especially given the conversations we have had around repeated coercion?

[Daniel Francis]

Absolutely. This amendment, of course, is widely supported by Committee members for that very reason. As I was saying, we already use that assessment for organ donation, and Members supporting this amendment believe that should be the case for those that are seeking an assisted death.

I now move on to amendment 284, in the name of my hon. Friend the Member for York Central. This amendment would change clause 9(3). Currently, that subsection lays out, and I will quote the language of the Bill, that the assessing doctor,

“(b) may, if they have doubt as to the capacity of the person being assessed, refer the person for assessment by a registered medical practitioner who is registered in the specialism of psychiatry in the Specialist Register kept by the General Medical Council or who otherwise holds qualifications in or has experience of the assessment of capability;”

This amendment would change the word “may” to “must”. In other words, the assessing doctor would have a duty to refer the person being assessed to a consultant psychiatrist if they had any doubt about that person’s capacity. I argue that this is a change that we both should make, and can easily make. If a doctor has doubts about the capacity of an applicant, it is good practice for them to refer that person to a doctor or a specialist in that field.

[Dr Opher]

Could I ask which amendment the hon. Member is talking about? Is it 284 or 6? Amendment 284 says that psychiatric assessment is mandatory in all cases, whereas amendment 6 says it is mandatory if capacity is in doubt. I just wondered which one he was talking about, because I support one and I do not support the other.

[The Chair]

Dr Opher, maybe you want to catch up on the papers and then intervene when you have a question to ask.

[Daniel Francis]

As my hon. Friend will know, my name is down as a supporter of amendment 6. I will get to that in due course. At the moment, I am speaking to amendment 284. I hear what my hon. Friend says—I am talking about the merits of amendment 284, but will get to amendment 6 in my closing comments.

On amendment 284, if a doctor has doubts about the capacity of an applicant, it is good practice to refer that person to a doctor with specialist expertise in that field. That would be true if the doctor was assessing the capacity of a patient to take any important decision, and is surely especially true when we are talking about a decision of this importance. I accept that people will have different views on amendment 6, when we get to it, from those they hold on amendment 284. Amendment 284 would put a duty on doctors to do something that is good practice. Most doctors in most circumstances would do it anyway, but in some cases, some may not. My hon. Friend the Member for York Central, who tabled this amendment, believes that we should write this law as tightly as possible so that doctors have that duty.

Amendment 294, which was tabled by my hon. Friend the Member for York Central, would require the doctor to base their assessment on provided evidence. Again, that is something that most doctors would do anyway in the extremely serious circumstances of a person’s applying for assisted death.

Many laws that we consider in this House relate to things that we are familiar with and understand well; but as my hon. Friend the Member for Bradford West said last week, some laws, such as this one, concern new matters. They are about things to which we need to give due consideration, as we are doing in scrutinising the Bill, because we need to understand the issues that arise. Those laws can introduce powers that could be dangerous if not properly safeguarded. This Bill, as has been accepted, needs strong safeguards. The aim of my hon. Friend the Member for York Central in tabling this amendment was to spell out that a doctor’s assessment of someone seeking assisted dying should be based on evidence. That would make it much less likely that any doctor would not pay sufficient attention to evidence they were presented with.

Lastly, as my hon. Friend the Member for Spen Valley knows, I am a long-standing of supporter amendment 6—I was in that base going into Second Reading. Alongside my concerns about clause 3, which she has heard at length, this matter was a key concern of mine going into Second Reading. I was therefore an early supporter of this amendment to change the wording around the referral from “may” to “must”. That was discussed on Second Reading. I do not want to speak for my hon. Friend, but I think she shares similar views to mine on the matter and suspect that the matter may be supported when we get to that debate.

[Jake Richards]

I will be brief. I will talk about my amendment 280, which I will not press to a vote. There remains an area that needs more exploring in this legislation—it has come up in debates already, but needs to be looked at further—namely, that a person may have capacity but have other mental health conditions that may impair their judgment. In those circumstances, a more thorough assessment than the two-doctor stage there is at the moment would be right. In reality, that is very likely to happen under the current structure of the Bill. My amendment simply attempts to make sure that it is mandatory. Having had discussions with my hon. Friend the Member for Spen Valley, I know that she is sympathetic to that.

There are amendments in the next group that aim to do the same thing. They, along with my amendment, may not be quite right. I urge the Government to look at this issue and see how we can work together to come to a conclusion, because I think that all members of the Committee would want that. I also support amendment 6, as I think everyone does.

--- Later in debate ---

[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 (Twenty-second sitting)

Daniel Francis Excerpts

Committee stage
Wednesday 12th March 2025 Public Bill Committees

[Naz Shah]

She beats my record for sure. I assure the Committee that my comments on new clause 17(a) will be brief in comparison with my previous speech.

Yesterday, my hon. Friend the Member for Ipswich and I disagreed on a point of detail. In fact, he was right and I was wrong. As he said, a provision in paragraph 4 of new schedule 1 allows the Secretary of State to dismiss a bad commissioner if the circumstances merit it. Although I still maintain my position that too much power is being given to a single person, I thank my hon. Friend both for pointing that out and for the courteous way in which he did so.

The hon. Member for Reigate has spoken very eloquently in defence of her amendment. Just to recap, new clause 17, tabled by my hon. Friend the Member for Spen Valley, would allow a person seeking an assisted death to appeal to the commissioner if a panel refuses their request. However, it would not allow any other person to lodge such an appeal.

By contrast, new clause 17(a) would allow several other parties to lodge such an appeal, including the two doctors who took part in the process, the applicant’s next of kin or relatives, or anyone who took part in the proceedings before the panel or who gave evidence to the panel. I acknowledge that there are genuine arguments against accepting new clause 17(a), and I have listened to them in detail and given them sincere thought. The family members who might appeal against a decision could perhaps have little or no contact with the person on whose behalf they say they are appealing; I note that the hon. Member for Harrogate and Knaresborough made a very honest and personal intervention on that subject yesterday, and I accept that that is a real possibility. As we all know, families are complicated.

There is also a likelihood that allowing more people to appeal against a panel’s decision, both for and against an assisted death, could mean that the commissioner will need considerably more resources. Otherwise. it is very likely that appeals will not be heard within a reasonable period.

Those are genuine arguments, but there are equally strong counterarguments. If the Bill passes, we simply do not know how many coercive or abusive people will seek to drive others towards assisted death. My hon. Friend the Member for Spen Valley spoke about coercion being a criminal offence, but the last figures I have seen show that only 4% of cases result in a conviction. However, it is worth noting that many people with experience in this area are very concerned about the possibility.

We also do not know how many people will opt for an assisted death because their palliative or social care needs are not being met. Again, as I referred to extensively in previous speeches, many people with first-hand experience of this field are extremely concerned about that.

We also do not know how many people will opt for an assisted death partly because they do not want to be a burden on their loved ones. We do not know how many of those loved ones would, in fact, be ready to care for the person who feels like a burden, nor do we know what safeguards, if any, will prove effective against any of those dangers.

One thing we do know is that relatives or carers of someone seeking an assisted death may be able to bring those dangers to light. A family member, a GP or even a paid carer may have seen someone come under coercive control. As new clause 17 stands, they might feel that the panel had made a terrible mistake in ignoring the evidence of that. The hon. Member for Reigate’s amendment (a) to the new clause would give those people the chance to bring their evidence before the commissioner.

I have to say that, as it stands, new clause 17 seems to make some fairly odd assumptions. It would allow an appeal if the applicant’s request for an assisted death were turned down, which means that my hon. Friend the Member for Spen Valley acknowledges that the panels may on occasion get things wrong. But the right of appeal is only one way, which seems extremely odd. It surely cannot be the case that the panels might get things wrong when they turn down a request for assisted dying, but are always right when they accept them.

There surely needs to be an amendment that allows people with knowledge of the situation to appeal if they think the panel has made a mistake in allowing an assisted death. Amendment (a) to new clause 17 would also reduce some of the dangers that we first faced. On that basis, I urge the Committee to support the amendment.

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

It is a pleasure to serve under your chairship, Sir Roger. I will be speaking to new clauses 14 to 17 and 21, new schedules 1 and 2, and amendments 371 to 373, 377, 378, 381, 388, 390 and 391—although I assure you I will not speak for as long as the hon. Member for Reigate did.

Yesterday, my hon. Friend the Member for Spen Valley referred to the Law Society’s neutral position on the new clauses and new schedules. I will not read out all four pages of its most recent submission on the matter, but, although it is neutral, it does continue to have concerns and queries about the new provisions. I will just read out the headlines.

The Law Society remains concerned about the role of the review, whether it would be accessible and workable for people seeking assistance, and the resourcing required. It seeks clarification on the nature of the functions to be exercised by the commissioner and by panels. It still seeks clarity on how panels will deal with cases and asks us to consider where lawyers may need to play a role and the availability of legal aid. We touched on that matter this morning. I accept that the Law Society’s position was used in evidence on the other side of the argument yesterday and that it is neutral, but I could have read all four pages of its response if I had really wanted. That is its position.

I will oppose some of the new clauses and raise concerns about others, including some of the amendments to new clauses tabled by my hon. Friend the Member for Spen Valley. As we have heard, the new clauses and amendments would replace the High Court judge mechanism in the original draft of the Bill with a three-person panel. As we said yesterday, that fundamentally changes the Bill from what the House voted for on Second Reading last November.

The panel will consist of a consultant psychiatrist, social worker and legal member who would chair it. I concur with those who have said that it would help if those individuals were involved earlier in the process. Several concerns have been raised about the High Court judge mechanism in the evidence that we have received. Although I accept that the new panel mechanism would address some of those, it would also leave some untouched and in some cases it could make the position worse.

During oral evidence, we asked witnesses whether and how the High Court judge system would work. Some said that they did not believe that it would. I credit my hon. Friend the Member for Spen Valley for listening to those points, but our problem and predicament now is that we were not able to seek oral evidence on the panel arrangement now before us, and that a large amount of the written evidence had already been submitted beforehand. I will come to this again later, but if we had gone through the normal process of a Government Bill—I accept that this is not a Government Bill—we would not be in this position now.

As a group, the 23 of us are now debating these schedules and clauses before Report, but we have not had any oral evidence on what is before us, and I would argue that we have also had a lack of written evidence. The panel system has complications, and it will be of life-and-death importance. We should have been able to ask witnesses whether a system would work, and how, but we have not been able to do that.

--- Later in debate ---

[Danny Kruger]

Before the hon. Gentleman moves on, I want to reiterate the value of his point. This is an enormous change to the Bill and totally transforms it, but we did not have the opportunity to hear evidence on it. Is he also aware that many of the distinguished people who gave evidence against the traditional stage, which has now been scrapped, have not endorsed the proposal to change it? In fact, some of them are equally opposed to the new proposal. We have not had confirmation that this is the right system, and we did not get the opportunity to hear proper evidence on it.

[Daniel Francis]

Yes, I am aware of some of those submissions from those individuals. I will come to this, but clearly even some people who were in support of making changes did not recommend the ones that we have now incorporated.

First, I would argue that people giving evidence to the panels should be doing so under oath. In my 20 long years as a local councillor, I gave evidence under oath to an investigation by a health and safety executive into the demolition of a building. I would say that the demolition of a building and this matter are very different, and therefore I query why this evidence is not being given under oath.

[Lewis Atkinson]

My hon. Friend is making a thoughtful speech. Has he had the chance to consider the situation with mental health tribunals that I mentioned yesterday, which usually do not take evidence under oath? Clearly, they make very serious decisions regarding sectionings and deprivations of liberty without invoking oath-taking powers.

[Daniel Francis]

I accept what my hon. Friend says, but there are differences of opinion. I accept that that is a very serious matter, but I would argue that a matter of life and death is more serious, and there are processes that we know. As I said, I gave evidence under oath about the demolition of a building and whether someone had followed the correct health and safety regulations, yet we would not be doing so in this case.

[Naz Shah]

My understanding is that, at the mental health tribunal, a person would be entitled to legal representation, which would be an officer of the court or a lawyer, so the bar is very different. Does my hon. Friend agree that actually this is like comparing an apple to a pear?

[Daniel Francis]

Indeed, these are complex matters and these comparisons are made. We have heard a lot about Spain, which I will briefly refer to later, but Spain has a very different legal process from us.

Returning to my comments, currently an individual would not have to give evidence under oath. As I said, the matters discussed by a panel are as important as they can be. In my opinion, people should be giving evidence to the same standards that they do so in a civil or criminal court.

My second concern relates to the procedures for investigating any doubts that the panels may have, and we have heard about that. The panel must hear from at least one doctor and from the applicant under this new set of proposals. They must read the two doctors’ statements and the applicant’s declaration, and then they can decide to ask questions of the applicant and/or one or both of the doctors. The panel can also hear from and ask questions of any other person. How is the panel going to know which people to talk to? Will the panel be asking the right questions of applicants? Applicants will have different circumstances in different cases. Will those professionals also be skilled investigators? I accept the evidence we had on the skills those people have and bring, but it is not clear to me whether they will be acting in a quasi-judicial way. We have heard that it will not be an adversarial system. Although I can see the problems with creating an adversarial system for the panel, there are systems in other countries where that is allowed, and a different appeal system also exists elsewhere.

On the third point, which is about the standard of proof, if the panel finds matters that worries it, but does not find actual evidence of coercion, then it is not clear to me what it does. The panel could find that a patient qualifies for assisted dying on the balance of probabilities, and then approve that request. Three members of the panel could decide that a patient is, on the balance of probabilities, free to make the decision. People have heard my concerns about capacity, and whether the process for determining that is correct. We talked yesterday about how decisions are made in new schedule 2, and particularly subsection 5. There are differing views on the Committee about subsection 5(2), which talks about a “majority vote”, and how that may align with subsection 5(3).

My fourth concern is that there is no provision made in the new schedule or amendments for how the panels will deal with people with learning disabilities. There may be a further amendment to come on that matter. I accept that we agreed to an amendment regarding training for individuals, but I have concerns about how learning disabilities could be judged by the panel. I referred yesterday to how people with learning disabilities could go through this process with no support from friends and family, and then be presented before a panel. Under the Mental Capacity Act 2005 and its code of practice, would the panel have to assist the person in making a decision? That is what, in my mind, the Mental Capacity Act states: that if someone requires help to make that decision, individuals with the power should help them to do so.

There are wide differences in how professionals talk to, listen to and interpret people with learning disabilities. I know that first hand, on a day-to-day basis. The Bill should set out best practice in this field from the start, so that we do not see discrepancies between how panels undertake their work with learning disabilities. I do not think I need to spell out how a bad decision in this field could lead someone choosing assisted death to a place where others may not want to take them.

The fifth area relates to appeals, and that they can only go one way. A person whose application for assisted death is rejected can appeal to the voluntary assisted dying commissioner. The commissioner can then either uphold the decision or allow the person to have an assisted death. We have discussed what happens if a person who knows that that person applying for assisted death has grounds for concern about the case. We have discussed the legal means of people wishing to seek a judicial review, which causes me grave concern. Under the Bill as written, the person known to the person seeking assisted death cannot appeal against a decision. I heard the debate this morning on the amendments tabled by the hon. Member for Reigate. The Bill says that the panel can choose to hear from any person who has a relevant connection, but there appears to be no mechanism for someone to apply to register any concerns with the panel.

In the oral evidence we received we heard concerns from Sir Nicholas Mostyn and Alex Ruck Keene that both sides should have the right of appeal. We heard that from a legal background, from supporters—I hear that Alex Ruck Keene was referred to as an objector, but I think he would say he is neutral in the process. People who have differing views about the process said to us in their oral evidence that both sides should have the right to appeal.

[Naz Shah]

My hon. Friend is making very important points. Is he aware that Professor Mark Elliott, one of the UK’s leading professors of public law and a former chair of the Cambridge law faculty, has spoken about the

“asymmetrical nature of appeals under the Bill,”

and said:

“At best, suggestions that judicial review is an adequate substitute for families who wish to challenge decisions indicate a fundamental misapprehension about the nature of JR.”

On the suggestion that injunctions might work, is my hon. Friend aware that between January 2017 and 2021, the administrative court has issued only one injunction?

[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.

[Sarah Olney (Richmond Park) (LD)]

To pick up on what the hon. Member for Spen Valley said, the multidisciplinary panel comes at the very end of the process. She has talked about the different stages, but they all occur in isolation. There is a doctor, then there is another doctor, and then there might be a psychiatric referral. We heard clearly in oral evidence about the value of the multidisciplinary panel referring to each other and taking evidence collectively. The strength of it would be that it occurred at the beginning of the process. I wonder whether the hon. Member will reflect on that.

[Daniel Francis]

I think that is the case. As the hon. Member said yesterday, people from those professional fields—in their written evidence, particularly—asked to be included in the process, but I do not think they were asking to be included at the end of the process; I think they were asking to be included earlier.

[Danny Kruger]

The hon. Gentleman has explained clearly in personal terms why it is important to involve the family, and I concur with the hon. Member for Richmond Park. I want to take the hon. Gentleman back to the rather abstract question of whether there are two sides to these cases. In contradiction to the hon. Member for Spen Valley, I think there are two sides to these cases, as she herself recognises whenever she says that this is a finely balanced judgment. The fact is that a decision can go either way, and it is very important that the decision makers are considering two sides. It is not just the immediate stated wish of the applicant that is the only consideration, as the Bill acknowledges. Does the hon. Gentleman agree that it is important to have the widest possible input into the decision, so that both options—to proceed or not—can be properly considered?

[Daniel Francis]

I hear what the hon. Member says. My concern has always been the scenario that I described. If this legislation is passed and we push it forward, one death that occurs where somebody has concerns about the process would be one too many. I said that clearly when we debated clause 3, and that remains my principal concern. It is not necessarily about two sides, but in cases where there are concerns, we need to do everything we can to ensure that that does not happen.

I have a query about the resourcing of the panel. Part of the reason why we ended up here was the queries about the resourcing of the judicial role in the process. We would need to find skilled professionals, especially consultant psychiatrists and social workers, to sit on the panel. If we look at the per capita rates in the Australian and American states that have assisted dying, we can estimate that the number of cases of assisted dying each year in England and Wales would be in the low thousands. Any consultant psychiatrist or senior social worker who sits on these panels will have to spend hours on each case. We do not yet know how many hours it would be on average, but for complicated cases, it could be many hours. What analysis has been undertaken of the capacity of consultant psychiatrists and senior social workers? Their professional bodies are beginning to look at that, but again, we were not able to ask them that during oral evidence, and because the written evidence was submitted so heavily in advance of these amendments and new clauses being tabled, we do not have that information in front of us.

We hear about the resourcing of our NHS mental health services and the fact that we do not have enough psychiatrists, so I query whether we have enough senior social workers. A senior social worker visits my house every year, but I have never seen the same social worker twice, because of the turnover issues, capacity issues and the lack of staff.

What will the Government do to ensure that the panels fulfil their responsibilities? We would be dealing with applicants who have very little time left, and being able to properly staff the panels must be a priority. We must not take psychiatrists and social workers away from their other work, while ensuring that people seeking an assisted death do not wait a long time. That is another matter on which we would have benefited from oral evidence from expert witnesses. We would also have benefited from the normal consultation that there would have been on a Government Bill, because we would have been looking at that matter for several months.

In summary, I accept that this set of new clauses and amendments is an effort to fix problems with the Bill, but problems remain, and there are probably some new ones as well. I will therefore not support a number of the provisions.

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

It is a pleasure to serve under your chairship, Sir Roger. I rise to speak to several new clauses and to amendment (e) to new clause 21.

There were many comments yesterday about the fact that a number of Members across the House had cited the judicial stage as an important reason why they supported the Bill. I challenge the notion that they voted for it exclusively for that reason, but I recognise the strength of feeling. To be frank, I was not one of them. I was not persuaded, not least because of a number of points made yesterday by my hon. Friend the Member for Rother Valley, that the judicial stage would be anything other than a rubber-stamping exercise. I am certainly not going to go into “good judge, bad judge”. I hugely respect the legal profession, of which there are many representatives present.

The legal profession has a huge range of expertise and experience, but it could not be expected to cover in depth the psychiatric and social care aspects of the process, about which we have being raising concerns for weeks. For that reason, and especially given that we are retaining legal experience on the panel alongside social workers and psychiatrists—a triple-threat approach, as it were—I fail to see how anyone could reasonably argue that this approach is weaker. In my eyes, it is much stronger.

Of course, some people will always say that it does not go far enough; we have heard that several times. As has been acknowledged, we will never convince everybody that an amendment is safe or good enough. An uncomfortable truth that is rarely recognised but is worth mentioning—I am sure that I will shortly be misrepresented on social media for saying it—is that no safeguard that we could put in any Bill, on any subject, will 100% ensure that there will never be any mistakes.

We have to do our level best to ensure that the probability is reduced to an absolute minimum. However, when someone goes into surgery, there may always be complications that cannot be foreseen, and we know that there have been awful miscarriages of justice; as a new Government, we have spoken about them, from the Post Office scandal to infected blood. We also have to rely on the fact that we are entrusting experienced, trained professionals with carrying out this work. Not only more often than not, but in nearly every situation, bar the awful cases of which we are all aware, they do their work to the best of their ability, and we have to be absolutely honest about that.

We should not look at the new clauses in isolation. They are part of a package. A number of amendments have been agreed to, about coercion and about ensuring that medical professionals are trained to the right standard. Like my hon. Friend, I hope we will see further amendments on special educational needs and learning disabilities. Those things are really important, so it is worth recognising that in addition to the new clauses, which in my view ensure a much stronger approach to the final judgment, we have agreed to a number of other amendments.

I want to pick up the issue of whether the process should be adversarial or inquisitive. I am sure that hon. Friends who have served at the Bar will tell me if I am wrong, but in my view an adversarial process is one of competition: it pits someone trying to prosecute an argument against someone trying to defend it. In contrast, an inquisitive approach is about asserting the truth. In my view, people who are not only going through agonising pain but making agonising decisions about what to do with the remaining days of their life should not be on trial. We should approach them from a position not of suspicion, but of support. Of course, that is caveated by all the things we have talked about, particularly on things like coercion. If there is any idea that a person has been coerced into the decision, of course we should investigate that, but the process should not be adversarial.

The connecting element is that we should ensure that we get the balance right between safeguards and safety. We should not add so many barriers and layers that a person can never access the process because it is too cumbersome. I do not want people to spend the remaining days of their life sitting in endless meetings, consultations and an adversarial court process, or whatever it might be. But we absolutely have to have all the right safeguards: as we have said, if there is any suspicion that someone may have been coerced or does not have mental capacity, of course we should go down the relevant routes to ensure that that is not the case.

Part of the reason why people will make the decision is that they want the autonomy to go out on their own terms, plan their remaining months and enjoy experiences with their family. We must ensure that those precious days are spent with their family, not in endless meeting rooms, so we absolutely have to get the balance right. As has been acknowledged, the diagnosis is a really important part of it. We regularly talk about the six-month point in the diagnosis, but we know when many people receive their diagnosis, their final days will be much shorter, so in the main people do not have time to go through a lengthy, difficult process.

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

Daniel Francis Excerpts

Committee stage
Wednesday 12th March 2025 Public Bill Committees

[Kit Malthouse]

The hon. Lady puts it exactly right. These are two separate questions, and we should not conflate them. Certainly, we should not allow the House of Commons to be constrained by those capacity constraints from doing what it thinks is the right thing. We should do the right thing, and then put pressure on the Government to provide the facilities that we think are required.

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

On that point, in our oral evidence we were not able to hear from witnesses about the changes to the clauses, because we did not understand what the repercussions would be at this stage.

--- Later in debate ---

[Sarah Sackman]

That might be something that other hon. Members wish to take away with them, whatever the policy intent may have been. In fairness, I do not think that the question of whether there is a requirement to give a positive indication of a decision either way is on the face of the Bill. However, I think that clearly the intention behind paragraph 5(3) of new schedule 2 is that there is unanimity in relation to the grant of an eligibility certificate.

[Daniel Francis]

I was once on a planning committee in which one member of the committee voted in favour and all the other members abstained, so the recommendation went through one to zero. Technically, given the way in which new schedule 2 reads to me, that could happen, because one member could vote in favour and two could abstain, and that would therefore be considered unanimous. Will the Minister comment on that?

[Sarah Sackman]

We are discussing how to construe the provision in paragraph 5 of new schedule 2. I should reiterate that, obviously, it is the promoter’s intent to have—hon. Members may call it what they will—the safeguard of unanimity behind that provision. If there is any feeling that the drafting does not fully reflect that intent, it can be tightened up. However, under of the Bill, there is clearly an intent to have unanimity in respect of the final decision about certification.

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

Daniel Francis Excerpts

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.”

[The Chair]

With this it will be convenient to discuss the following:

Amendment 431, in clause 15, page 11, line 1, leave out paragraphs (a) and (b) and insert

“the donee of Lasting Power of Attorney for Health and Welfare decisions, who has the ability to give or refuse consent to life-sustaining treatment, as registered with the Office of the Public Guardian.”

This amendment would restrict proxies to donees of Lasting Power of Attorney for Health and Welfare decisions, including to give or refuse consent to life-sustaining treatment.

Amendment 473, in clause 15, page 11, line 3, leave out from “person” to end of line and insert

“of a description specified in regulations made by the Secretary of State.”

This amendment provides that persons of a description specified in regulations (rather than persons “of good standing in the community”) may be proxies.

Amendment 253, in clause 15, page 11, line 3, at end insert—

“(6) For the purposes of this section “declaration” includes the cancellation of a declaration.”

This would allow a cancellation of the first or second declaration to be signed by a proxy.

Clause stand part.

[Daniel Francis]

It is a pleasure to serve under your chairship, Ms McVey. Amendment 321 will mean that the proxy’s declaration must also include the reason why the person was unable to sign their name. That would add a vital safeguard for the person and for the proxy.

In this Committee, we have consistently discussed the need to safeguard vulnerable people from being coerced into choosing assisted dying; for those who need a proxy, the risk of coercion might be higher. As the Bill currently stands, the person needs to tell only their proxy the reason why they are needed. I would like to make it clear why the amendment is important. The Bill does not currently specify that the patient’s declaration of the reason for needing a proxy has to be heard by anyone other than the proxy themselves.

I am conscious that, since my amendment was tabled, my hon. Friend the Member for Spen Valley has also tabled amendments about the relationship and who the proxy could be, but I do not believe that amendment 321 would be a burden or cause any unnecessary complication. As the Bill currently stands, when a proxy signs the declaration they already have to include their full name and address, the capacity in which they qualify, and a statement that they have signed in the capacity of a proxy.

As we have said before, it is vital to safeguard vulnerable people at every stage of the process; adding the reason why the proxy was required allows other people during the process, including if there were allegations later, to understand why that was required. If the first declaration is signed by a proxy, then the co-ordinating doctor—the independent doctor—would be able to examine that reason, so including the reason for someone being unable to sign their own declaration would improve transparency around the process. I hope that hon. Members will agree that we need to be able to monitor how those requests are made and the reasons that people are giving.

In written evidence, several experts raised the importance of collecting good data to ensure that the assisted dying process is properly monitored, and amendment 321 would assist that; I believe that it would protect both vulnerable patients and proxies. I absolutely appreciate and understand that people may have a very good reason for requiring a proxy—if they are very ill during the process, for example. The amendment would simply mean that, if there were to be concerns or allegations at a later stage, the reason why the proxy was required would be written down.

[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.

[Danny Kruger]

I am grateful to the hon. Gentleman and I very much support his amendment; it is good to hear that the Bill’s promoter, the hon. Member for Spen Valley, will as well. The hon. Member for Bexleyheath and Crayford has made his points very powerfully, and it is good that we are in agreement.

I also support amendment 431, tabled by the hon. Member for York Central, which would restrict proxies to donees of lasting power of attorney. The point is that somebody who has been through the process of taking on power of attorney has been properly vetted and approved; they are required to demonstrate their fitness for the role and undertake a meaningful duty of care to the person for whom they are a proxy. That strikes me as an appropriate suggestion from the hon. Lady.

Amendment 411, tabled by the hon. Member for Broxtowe, suggests that the phrase

“a person who is of good standing in the community”

should be deleted. I think she is absolutely right to suggest that. I made the point on Second Reading that—

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

Daniel Francis Excerpts

Committee stage
Tuesday 18th March 2025 Public Bill Committees

[Danny Kruger]

I was not suggesting that pentobarbital has a paralytic effect. Often in assisted dying, a paralytic is administered first as part of the cocktail of drugs. Subsequently, we discover that while the patient may have appeared entirely calm, sleeping peacefully, significant trauma may have been occurring beneath the surface.

I defer to the hon. Member’s knowledge, but my understanding from the scientific evidence I have read, and that medics have given to me, is that the extent to which people executed by lethal injection, by pentobarbital, have their lungs fill with fluid is peculiar—it is remarkable. They effectively drown beneath their peaceful exterior.

I intend to press amendment 464 to a vote, and I intend to support other amendments in this group. Although I support the aspiration of amendment 532 to make provision for what to do in the event of a procedure’s failure, I think it gives too much leeway to the Secretary of State, so I will oppose that amendment. I think the amendments that the hon. Member for York Central and I have tabled are preferable.

To make the obvious case for those amendments, and as I said in a previous debate, there are three choices in the event of failure. The first is to ignore the plain signs of distress, of things going wrong and of the patient suffering, which is clearly a failure of the doctor’s duty of care. The second is to expedite the death, which we have decided would be illegal under the Bill. Therefore, the only option is to revive the patient and escalate treatment, rather than actively or passively facilitate their death.

I hope Members will agree that, on the rare occasions when assisted suicide goes wrong, it is right that the patient is immediately revived and taken to hospital, or for the doctor to take whatever action is necessary. I am interested to understand why those amendments should not be supported.

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

It is a pleasure to serve under your chairship, Sir Roger. I will speak to amendments 429 and 430 in my name. During oral evidence, we discussed the issues in subsections (9) and (10) of clause 18 and whether there is a contradiction. Subsection (9) states that the co-ordinating doctor

“must remain with the person”

and subsection (10) says:

“For the purposes of subsection (9), the coordinating doctor need not be in the same room as the person”.

We also discussed how that works in other jurisdictions. My amendment 429 would deal with that conflict. If the Bill were to become law, that conflict could be queried.

We also need to consider the possibility of complications. Clearly, if there are complications and the doctor is not in the same room, they would not necessarily be aware of those complications. I accept that, in some normal circumstances, doctors and medical professionals are not present in the room at the time of death; at other times, they are present. The amendment would mean that if something were to go wrong and someone was having a painful reaction to the drugs, the doctor would be there to see and help.

I do not understand what the Bill means when it says the doctor does not have to be in the same room. How far away would the doctor have to be? One subsection says the doctor has to remain with the person, and the following subsection says they do not have to be in the same room. If the Bill were to pass, we would be asking doctors to do something that is unprecedented. If the person were to suffer complications such as seizures or vomiting, or if they were exhibiting signs of distress, it appears that the doctor should be present. Members may think this could encroach on a patient’s privacy, but I think there is a discrepancy between the two subsections.

On amendment 430, I am conscious that my hon. Friend the Member for Ipswich has tabled a similar amendment. The intention of my amendment is to ensure there are regulations in responding to any unexpected complications that arise in relation to the administration of the approved substance, including when the procedure fails. I am conscious that if a doctor intervenes, they could end up in breach of the Suicide Act 1961. I therefore left the wording in that vein, as I understand that we will receive more information in due course.

Again, we received oral evidence from a number of people that what a doctor is meant to do in the event of unexpected complications is a matter of concern from both a legal and a medical perspective. We know from the evidence received from other jurisdictions that—I accept in a small minority of cases—there can be complications or the death can take much longer than expected. We also received evidence that, on rare occasions, death can take days.

Amendment 430 would show we have thought about those circumstances and provided for them by giving doctors a code of practice to refer to, rather than being left in the dark if a difficult situation arises at the time of death. We must not find ourselves in a circumstance in which doctors and patients are unprepared. It is important for us to think through, provide for and safeguard against all possible scenarios, however rare they might be. Of course, we would not want them to happen, but in some circumstances they might, and we would not want there to be a legal hole. Accepting the amendment would mean the Secretary of State has the opportunity to provide a code of practice for such circumstances. I hope hon. Members will be able to support the amendments in my name.

[Sarah Olney (Richmond Park) (LD)]

It is a pleasure to serve under your chairmanship, Sir Roger. I support amendment 429, tabled by the hon. Member for Bexleyheath and Crayford.

I do not understand how subsection (9) can require the doctor to remain with the person until they have self-administered and died, or until they have decided not to self-administer, while subsection (10) states that the doctor need not be in the same room. The Bill becomes even less coherent when we consider subsection (11), which requires the doctor to remove the substance immediately if the person decides not to self-administer—how can the doctor do so if they are not in the same room? Amendment 429 would make the scheme more coherent and I support it for that reason.

I accept that there are downsides to having the doctor present, especially before the administration, as people have a normal desire for privacy, but that needs to be balanced against the risk of someone else taking the substance or something going wrong in the process of self-administration. In Australia, there is no requirement for the doctor to be present, which has led to some cases of abuse. I understand why the Bill’s promoter has chosen not to go down the Australian route, but the position arrived at in subsection (10) lacks coherence and is unclear.

What does it mean to remain with the person without being in the same room? Does it mean being in the corridor just outside the room, but with the door open? What if it is closed? What if, as a result of the door being closed, the doctor is no longer within earshot? I am not the only one who is confused, as so are the doctors who will have to apply the legislation. For example, Dr Janet Menage, a retired GP, told us in written evidence—TIAB 182—that the provisions

“are mutually exclusive: doctor ‘must remain with the patient’ but ‘not in the same room’…This makes no sense. In any case, if the attending doctor is not in the same room there could potentially be an intervention by another person to the patient’s detriment. Or the patient may wish to cancel the suicide at the last moment and be unsupported in voicing that decision.”

With or without subsection (10), I would like to know whether the Minister has made an assessment of the workforce impact of such a requirement for the doctor to be present. As Dr Rebecca Jones told us:

“As the death may take many hours, I’m uncertain of the practicalities of this”.

--- Later in debate ---

[Dr Opher]

I will make a little progress and will then take my hon. Friend’s intervention.

On amendment 436, all medical practitioners are required under their code of practice to record any event they come across. I feel there should be better data and I agree with the hon. Member for East Wiltshire that we need to collect data. We are actually very good at doing that in the NHS. Under clauses 21 and 22 there are provisions for the Secretary of State to collect data on complications. I am therefore not sure that particular amendment tabled by my hon. Friend the Member for York Central is necessary. I think I have covered amendment 464, from the hon. Member for East Wiltshire.

On amendment 429, about the doctor being in the same room, I totally understand the anxieties presented by my hon. Friend the Member for Bexleyheath and Crayford, but I feel that whether the doctor is there should be the choice of the family and the patient. There may be some confusion about this, but to me, what the Bill implies—I am interested to hear the Government’s opinion—is that the doctor should deliver the medicine to the patient, check that the patient is willing to take the medicine as per amendment 462 from the hon. Member for East Wiltshire, give the medicine to the patient, and then ask the family whether they want them to be there or in the next room. They need to be available, but do they need to be in the same room? I think that should be the choice of the family.

[Daniel Francis]

I hear what my hon. Friend says, but the wording of clause 18(9) and (10) is ambiguous. Subsection (9) says that the co-ordinating doctor must remain with the person until “the person has died”, but subsection (10) says that the doctor

“need not be in the same room”.

I do not want to get into measuring metres, but where exactly is that place? Is it in the same room or is it in the same building? If it is in the same building, you cannot possibly be with the person until they die. Does my hon. Friend have comments on that?

[Dr Opher]

I am interested to hear what the Government say about the wording around that amendment and whether it is safe. I would defer to the Minister on that.

Amendment 430 from my hon. Friend the Member for Bexleyheath and Crayford, about a code of practice that must address complications and failures, is quite a strong amendment and I am willing to support it. If as doctors we have a code of practice about how we handle this type of thing, the amendment would potentially help, and perhaps answer some of the questions from my hon. Friend the Member for Banbury.

I do not believe that amendment 255 from my hon. Friend the Member for Filton and Bradley Stoke is necessary. I believe it should be dealt with under clause 21.

I believe that the very well put amendments 532 and 533 from my hon. Friend the Member for Ipswich could be covered by amendment 430.

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

Daniel Francis Excerpts

Committee stage
Tuesday 25th March 2025 Public Bill Committees

The second principle is equally critical: NHS funding must not be diverted to external organisations that profit from, or are sustained by, the business of ending lives. Every pound spent on healthcare is a pound fought for by taxpayers, by clinicians and by patients. To direct that money into the coffers of private providers, whose incentives might lean towards efficiency over compassion, risks betraying the NHS’s founding ethos. We cannot allow a system where the end of life becomes a revenue stream and where the decision to die is shaped, however subtly, by a balance sheet rather than a patient’s free will.

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

My hon. Friend the Member for Luton South and South Bedfordshire referred to IVF. My wife and I have been through IVF, and what exists is exactly what the hon. Member for Richmond Park described. There is an annual show at Olympia where it has been commercialised and it is put to people, “Why not go down this route? Why not go down that route?” Does the hon. Member agree that that is really not a route we want to go down?

[Sarah Olney]

I am grateful to the hon. Gentleman for that point, because it provides a comparison. We are talking about there potentially being a market for end-of-life services. I do not think that is the way we should be going.

--- Later in debate ---

[Liz Saville Roberts]

I appreciate the hon. Lady’s comments. I think there is a lesson to be learned. I understand that the legislation is unprecedented in coming through the private Member’s Bill route. After this, we will have to think about how we deal with such legislation because we are feeling our way. I appreciate the opportunity to work with the co-operation of colleagues on something for which there is no road map, but I fear, although I also appreciate, that we are making the road map as we go.

[Daniel Francis]

It is a pleasure to serve under your chairship, Ms McVey. I genuinely did not intend to speak today, but the debate, particularly the speech by the hon. Member for Richmond Park and the intervention from my hon. Friend the Member for Luton South and South Bedfordshire, has brought me to my feet.

It was 13 or 14 years ago that my wife and I embarked on the IVF road. It never worked—our children came naturally in the end—but I know the pain and despair of that process. Although I do not call into question the efficacy of any doctor, some companies, looking to their profit margins, will always prey on people.

We have had discussions today about the regulations to be made under new clause 36, but we need some clarity on Report. I referred to the annual fertility show at the Kensington Olympia; I have checked, and it is still held. I visited it about 13 years ago. Frankly, it is complete marketisation. People who are already on their knees and really depressed are left feeling that companies are simply trying to make a profit out of them. People can already book their tickets for the event in May and navigate a path through it: there are expert-led seminars, real stories, whereby people connect with others who have been through the process, wellbeing workshops and more than 70 exhibitors. Of course, they are all paying a fee to be there, and they all aim to have made a profit by the end.

Our first set of IVF treatment was free on the NHS. We paid £7,000 for our second, which was again through the NHS. We went through several visits to NHS and private providers to assess whether we were willing to pay a top-up for a slightly better service. I really did not intend to speak this morning, but I wonder whether, in the final part of the process that we are considering, there would be the sort of upsetting process that has taken root in the fertility industry in this country. We need more clarity on that by Report.

[Naz Shah]

I stopped myself intervening on my hon. Friend the Member for Sunderland Central; I had lots of questions, and he has confused me even more. He referred to the provision in clause 8(6)(d) about the doctors being different. If I am right, healthcare providers such as Aspire or Ramsay Health Care could be commissioned to deliver the services. If so, does that mean, as the hon. Member for East Wiltshire suggested, that we will need two separate doctors or providers because the co-ordinating doctor and the second doctor cannot be linked? That confuses me even further. After what we have heard this morning, it strikes me that we do not have any proposed model and the measure has not been thought through. It speaks to the idea that this is not right. We are spending hours and hours going through hypotheticals and possibilities—this could happen, that could happen—but there is nothing actually before us.