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

Lewis Atkinson Excerpts

Committee stage
Tuesday 28th January 2025 Public Bill Committees

[The Chair]

We will come back to that once I get other Members in.

[Lewis Atkinson (Sunderland Central) (Lab)]

Q Clause 35 introduces a duty on the Secretary of State to report on a periodic basis to Parliament on the accessibility and quality of palliative care. As I understand it, that would be a new duty that we are pioneering. What is your reaction to that? Will it be helpful in continuing the momentum to make improvements to palliative care? Are there any further reporting requirements as part of that assessment—for example, around equity of access, which some have mentioned—that we could think about when considering amendments?

James Sanderson: I welcome the provision in the report. What is necessary is a benchmarking of the current position. Rather than waiting a significant period of time to do a review, we need to benchmark the current state of palliative care and then base subsequent reviews on any changes. As I mentioned before, we also need to look at the wider context. If we look narrowly at the provision of palliative care, we will not properly see what goes on across the whole environment of the health service and social care.

We have mentioned the fact that district nurses and general practitioners are providing a huge amount of palliative end-of-life care, so it may not just be what goes on inside hospices and in palliative care teams in hospitals. I agree that that needs to look at the demographic information so that we are collecting details on who is accessing palliative care and where, and the certain types. All that is necessary as part of the review.

Dr Cox: I agree completely that we need to be doing reviews now and in the future regularly on palliative care aspects. I also think there is an opportunity to write into the Bill other monitoring that would be really helpful in ensuring safety on an ongoing basis. That includes monitoring in terms of decision making—how often assessing doctors refer to others, how often they disagree and what happens after the declaration.

In the Bill there is, as far as I could see, no limit to the delay between the declaration and the request for the substance. That would be an interesting thing to look at in the future, because somebody could delay for six or eight months. Do we do another capacity assessment then? That is a tricky question. What about the taking of a substance? We have not talked about that. There are a lot of things we could look at in future that would be really helpful to monitor.

[Lewis Atkinson]

Q I think around 650 people with a terminal illness currently take their own lives a year. If we see a success with the Bill, I wonder whether there would be a reduction of that number going forward. Do you think that could be incorporated in monitoring going forward? Do you think there are opportunities to avoid that suffering? People are clearly experiencing traumatic deaths at the moment.

Dr Cox: It is really difficult to know how many people who die by suicide because of their terminal illness would instead access assisted dying, and it is really difficult to understand the impact of assisted dying legislation on that. 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. What we need for that is better mental health services, better support around diagnosis and earlier palliative care.

The other piece of evidence that I would offer to you is that the global picture of what happens to suicide rates after assisted dying legislation is introduced is confusing and mixed. But there are jurisdictions, for instance Germany, where after the introduction of assisted dying legislation the incidence of suicide has gone up year on year. I do not think we can say that introducing assisted dying legislation will stop those suicides.

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

Q I want to build on the comments about the multidisciplinary teams that you all work with. The chief medical officer said, in one of the sessions earlier, that discussions about death, dying and end of life are increasing. They are getting better. However, importantly, when we heard from Professor Ranger of the RCN and from the Association of Palliative Care Social Workers, they also talked about the conversations that they have, as part of the wider team. Quite often, it is nurses having those conversations.

I was struck by the way the RCN talked—and you, Dr Clarke, used the word as well—about not being paternalistic, about having the patient at the centre of that conversation, and about ensuring that we listen to the patient and ask them, “What is it that you want?” That, for me, is all about autonomy. Do you agree? The emphasis must be on patient autonomy and their choice at the end of life.

Dr Clarke: One hundred per cent. Sometimes, those of us who work in palliative care almost see the extent to which we try to place the patient at the centre of everything as quite radical, when contrasted with a lot of the other medical specialities. My opinion about what is best for a patient does not matter; their opinion is what counts.

The power of the multidisciplinary team, and the reason for thinking that it may be worth considering amending the Bill so that there is a greater role for a multidisciplinary team, is this: the fact that everybody in that team brings their unique perspective. In my hospital, whenever there is a tricky issue regarding a palliative patient, we will have an MDT. There may be 10 people in the room, all discussing the issues. It might be that someone has decided that they want to withdraw their life-prolonging treatments, or they want to have life-prolonging treatment and, for whatever reason, it is really complicated. We will have the patient, their family, doctors, nurses, social workers and dieticians—a big group of people—in the room because that is the way to make the decision most safely and most effectively, in terms of enabling the patient to have the treatment that they wish to have. It is incredibly important to have that.

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[Dr Shastri-Hurst]

Q Sir Nicholas, can I bring you in on that? You referred to it directly in your proposed amendment.

Sir Nicholas Mostyn: I did. What particular aspect do you want me to address? The range is quite wide. In relation to the administration of the substance, it is interesting that in Spain, which is now in its second full year of doing this, take-up has been extremely low. There have been only 700 requests, with a quarter denied, and a quarter of the people died prematurely. Three hundred were granted, but of those 300, in 95% of cases the substance was administered by the doctor and auto-administered in only 5%. I am trying to work out why that is, culturally, in Spain. Maybe people go when they are extremely infirm, and that is the reason for it. I am not able to see the moral distinction between having the substance administered and auto-administration. On your question, there are devices that enable somebody who is locked in to end their lives by a blink of the eyelash, aren’t there?

Sir Max Hill: Yes.

[Lewis Atkinson]

Q We have heard from two witnesses—you, Sir Nicholas, and Dr Ahmedzai from the earlier panel—on the question of judicial oversight. While we have you here, Sir Max and Mr Ruck Keene, what are your observations on the proposals from those two witnesses that an alternative to a High Court judge overseeing the process would be some form of panel or tribunal, potentially multidisciplinary? What is your view on that and the legal implications for that?

Sir Max Hill: I would say two things. First, it bears weight that, looking at all the provisions in the Bill, the additional level of scrutiny currently being called judicial scrutiny or approval is absent in all the comparative examples around the world. That already makes this a tighter pre-legislative model than we see in other countries that have gone down this route. That is worth remembering.

Secondly, while I am not a family lawyer—I was, but a very long time ago—I think that the family division of the High Court would be very well-placed to perform the sort of exercise enshrined in current drafting, which is not a rubber-stamping exercise, but a substantive consideration of heavily objective medical opinion arrived at by not one, but two doctors, one of whom is not the treating doctor.

I listen to and accept the question of pressure on the justice system generally. That is something the Committee will be concerned about because, if the Bill passes, we want something workable. I heed what Sir James Munby said. The sitting judiciary, for good constitutional reasons, is highly unlikely to say anything. But there is therefore merit in looking at clause 12, under the heading, “Court approval”, and performing quite a simple exercise, which for me would be going through subsections (1) to (6) inclusive and, where it says “High Court”, replace that with something else. Personally, I have an aversion to the word “tribunal”, which indicates a right and wrong or some kind of fault-based system—that is not what we are talking about here. But a panel, as Nick said, is the way to go—

Sir Nicholas Mostyn: A panel appointed by the Official Solicitor.

Sir Max Hill: Whether appointed by the Official Solicitor or not. Dare I say it—because I am sitting next to a very distinguished one—I do wonder about the recently retired members of the judiciary and the role that they could play under a replacement panel system.

Sir Nicholas Mostyn: That is what I had in mind—the Official Solicitor looking at the retired judges.

Sir Max Hill: Yes, so there is legal professional capacity among the retired judges—not that they would sit alone on a panel. It would bring with it the extra benefit of having suitably qualified medical professionals, like the Spanish model. So yes, I think that could be done. That is not the same thing as saying that the High Court approval model is fatally flawed and could not be introduced, but I do think there is a viable alternative, which is worth looking at.

Alex Ruck Keene: I have only one observation, and I said this in my written evidence but I also want to say it out loud. You have to think very carefully about what purpose any form of this oversight is actually serving societally, if the oversight panel, whether that be a judge or a panel, cannot decline to approve an application if it considers that the reason the individual is seeking assistance in dying is because of service provision failures by the statutory bodies responsible for meeting their health and social care needs. That is a question of principle, and I want to make sure that that is squarely before you.

[Liz Saville Roberts (Dwyfor Meirionnydd) (PC)]

Q I have a question for Alex Ruck Keene. I noticed the concerns in your evidence about presumption of capacity, and I know that you have written in the past about concerns over different disciplines having different definitions of capacity. Later on in your evidence, you also mention multidisciplinary consideration of circumstances in assessing eligibility. How might that multidisciplinary eligibility assessment alleviate some of your concerns in relation to capacity decisions?

Alex Ruck Keene: We have capacity, but we also have to make sure that it is settled, informed and voluntary, and that we do not have things like pressure or influence going on. It is important to make it clear that we are not just saying that this is about all the weight going on capacity. For instance, if you have social workers involved—if you have, say, palliative care social workers involved, assuming it is a palliative care situation—they are going to be far better informed about what options might be out there than a doctor, potentially, depending on the doctor. Social workers more generally might well have more expertise in picking up signs of coercion or influence than a doctor, but I do not necessarily want to get into, “Some disciplines are good at X” and “Some disciplines are good at Y”—I have come across brilliant examples and bad examples in both zones.

It is partly about multidisciplinariness and also about the fact that you have more than one person trying to talk it through. When I train, I always try to tell people that 85% of capacity assessments are not all that difficult —they are just made difficult because you do not have time or you are not listening—but 15% are more difficult. I think a lot of these will be in the 15% zone, and in that zone, the more people you can have thinking about it, so long as they have an agreed framework within which to think, the more reliable, transparent and accountable the outcome is going to be.

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[Kit Malthouse]

I, too, support the amendment proposed by the hon. Member for Spen Valley, and in particular the addition of Jane Monckton-Smith. I have read her book; it is definitely worth a read and is pretty alarming. I will address why I do not think the Committee should support the amendment to the amendment tabled to add other witnesses.

Jane Monckton-Smith has done a huge amount of research in the area, and as well as being an academic who specialises in coercion and femicide—and the impact that coercion has on femicide—she is a former police officer, so has significant frontline experience. As part of her research she will have spoken with and interacted with many of the groups that the hon. Member for Bradford West is proposing to include—although maybe not specifically. I would prefer it if we stuck with the list that the hon. Member for Spen Valley has put forward, and not add the additional witnesses proposed.

[Lewis Atkinson]

I agree with my hon. Friend the Member for Spen Valley. Having agreed to extend the time on Thursday to hear devolution issues and from the Royal College of General Practitioners and the Royal College of Psychiatrists, by adding two further witnesses, the amendment to the amendment would reduce the time available on those options. In an ideal world we would like to hear from all sorts of people. The option of written evidence is available. We have got other evidence, and I want to ensure that Thursday’s session is focused on the proposals that my hon. Friend has made.

[Naz Shah]

There is nothing in my amendment that suggests Professor Monckton-Smith is not capable in her expertise. I am asking for other expertise to be brought to the table. Yes, there is the argument that people can submit written evidence—but so could every witness we have heard from today, and that we will hear from tomorrow and the day after. If that is the yardstick, is this just a tokenistic exercise? I would argue that for women in particular, who are the victims of domestic abuse—