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

Daniel Francis Excerpts

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.

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[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.

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[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.

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[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 (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

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.

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[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 (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).