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

(Limited Text - Ministerial Extracts only)

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[The Chair]

Thank you. Some hon. Members have already indicated that they wish to ask questions; if others do so, the Clerk will take note and I will come to them.

[Kit Malthouse (North West Hampshire) (Con)]

Q196 Thank you all for coming. Clause 26 will create a new offence of coercion. In your view, is that offence correctly drawn? Is 14 years long enough as a deterrent?

Professor Esmail: In all honesty, I had not thought about it like that. I cannot say—I do not have the expertise to know—whether it is deterrence. I think that coercion is something that we should be concerned about. My view is that at the moment we do not even know whether it occurs. Currently, what happens? For example, if someone chooses to go to Dignitas, we do not know whether they have been coerced to go or not. If someone chooses to withdraw life-supporting treatment, we do not know whether this happens or not. It is good that it is acknowledged, and it is good that we should try to put in place some safeguards so that we understand it, we monitor it and we have a sanction of some sort.

Richard Robinson: Safeguarding is a significant issue. I think that coercion is underplayed significantly in cases of abuse of older people. The abuse of older people is seen as a minority issue and—we as a charity would argue—that makes much of the difference. We deal with about 75,000 people annually, as I said, and about 2.6 million people are affected by abuse every year.

One of the biggest issues we face is the fact that we have no idea of the levels of training that healthcare professionals and the judiciary receive to understand and recognise coercion. That leaves us in a situation where medical professionals say that coercion in these circumstances is minimal, but people need to understand what coercion is and how to recognise the signs of it in the first place, especially bearing in mind that the vast majority of cases that we see take place in the home and by family, rather than by professionals.

The other point that I would make about coercion is that there is lots of talk about it being limited to victims of abuse. I would argue that what goes on behind closed doors is the big issue. How do we ensure that medical professionals can see what is going on behind closed doors and build up a relationship with that individual? As a charity, we deal with these people every day, and it is difficult enough for us to build up a relationship. A medical professional who sees them in isolation over a short period of time to make these decisions does not have that opportunity. There is an awful lot to do to ensure safeguarding and to put that kind of deterrent in place.

[Kit Malthouse]

Q We have heard from earlier witnesses, particularly from other jurisdictions, that training is the key. Is it therefore your view that in guidelines, for example, specific training in this area could be effective?

Richard Robinson: We take calls from professionals all the time, and we give training all the time. Safeguarding older people requires specialist training—it is a specialist issue—and although it may not be a solution, it is certainly on the pathway. We would also like to see refresher training built in. Any kind of amendment that includes training—not just on the medical side, but for anyone involved in decision making, like the judiciary—would be a real step forward.

[Danny Kruger (East Wiltshire) (Con)]

Are we asking one question each, Mr Dowd, or may I ask two if I am quick?

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[The Chair]

We will now hear oral evidence from Dr Lewis Graham from the University of Cambridge; Baroness Kishwer Falkner, chair of the Equality and Human Rights Commission; Fazilet Hadi, who is head of policy for Disability Rights UK; and Lord Sumption, former justice of the Supreme Court. For this session we have until 4 pm. Will the witnesses please introduce themselves for the record?

Dr Graham: My name is Dr Lewis Graham. I am a fellow in law at Christ’s College, Cambridge. I work on human rights law and I have a particular interest in the European Court of Human Rights and the European convention on human rights. My take-home message today is that the provisions of the Bill would not, or are very unlikely to, breach the European convention on human rights.

Lord Sumption: My name is Jonathan Sumption. I was a justice of the Supreme Court between 2012 and 2018. I also wrote a substantial judgment in the Nicklinson case.

Baroness Falkner: I am Kishwer Falkner. I am the chair of the Equality and Human Rights Commission and have been a Member of the House of Lords since 2004.

Fazilet Hadi: Good afternoon, everyone. I am Fazilet Hadi. I am head of policy at Disability Rights UK, which is a disabled people’s led organisation, meaning that the majority of our trustees and staff—and myself—are disabled people.

[Kit Malthouse]

Q Lord Sumption, I heard an interview with you on the radio, I think before Christmas, in which you expressed doubts about the third layer at the High Court. We heard evidence earlier that there is an alternative route that might see more of a panel sitting, rather than a High Court judge. Could you expand on your view of what that third layer could and should look like?

Lord Sumption: This is about clause 12, and my own view is that clause 12 is unnecessary and in some respects undesirable. I have seen the proposed amendment relating to a panel. That would resolve the problem of the shortage of capacity in the High Court; it would not, however, resolve the problem of the over-engineering of the procedural provisions of the Bill.

[The Chair]

Excuse me, Lord Sumption, but could you speak up? We are finding it difficult to hear at this end.

Lord Sumption: I am so sorry. The concern that I have about clause 12 in its current form is that it is not entirely clear what the judge is supposed to do. There are many things that he is entitled to do, but the real question is: is he there in order to ensure that the two doctors have done their job and that the ducks are all in a row, or is he there to form his own view on all of those matters, completely independently of those who have already given their certificates? If it is the latter, one is talking about quite a time-consuming process involving a lot of additional evidence. It seems to me that this is a protection that no other country, so far as I am aware, among those that have authorised one or other form of assisted dying has included. I think it confers a protection that is largely illusory and it is undoubtedly very time-consuming.

I also have a residual feeling, which you can fairly describe as a prejudice, that it involves the intervention of the state in an intensely personal and agonising process, which, to my instinctive mind, is inappropriate. I think that most of those things, apart from the capacity problem, would be equally true of the tribunal option.

[Kit Malthouse]

Q I may be speaking out of turn, but the sentiment of the House generally seems to be that there should be a third layer of supervision over the process. There are other territories have that third layer of supervision, such as Spain and Australia. Have you examined any of those, and is there a model that you think might be effective?

Lord Sumption: I am aware of them. Basically, they fall into two categories. There are those, like Spain, that have a process whereby a tribunal deals with the matter in advance—and, in fact, in the case of Spain in arrears as well—and there are those like the Netherlands, where it is a retrospective process. I have heard it said that a retrospective process is of no use. I am not sure I agree with that. I think there is a case for having a retrospective process to ensure that the practitioners are doing what they are supposed to be doing and that any objectionable tendencies are stamped out at an early stage.

It seems to me that if you are going to have the opinion of two doctors, which is almost universal as a requirement in these cases, I do not think that it is necessary to have a third layer, and in some respects it is undesirable. I appreciate that the House must have concluded that it was in favour of it, but my own view is that I am not.

[The Minister of State, Ministry of Justice (Sarah Sackman)]

Q It may flow from what this third layer of a panel or court is doing, but what sort of information would be desirable for the panel to have before it in order to add a meaningful layer of scrutiny?

Lord Sumption: That is really the critical question when you ask yourself how useful this process is. Obviously, they will have the opinions of the two referee doctors—they will have their rather pro forma statements, and possibly statements they will make by way of expansion of those—but if they are going to add something of value in the way of safeguards, it seems to me that they have got to carry out an independent investigation of those same matters. That would involve getting, presumably, a third expert adviser and proactively seeking evidence about, for example, the patient’s state of mind. It seems to me that that is duplicative.

Obviously, there is no system that you cannot have a greater degree of assurance about, but I am struck by the fact that no other jurisdiction has felt it necessary to have a process as elaborate as this for the purpose of duplicating the expert views already required.

[Sarah Sackman]

Q Lord Sumption and Dr Graham, you will have seen that clauses 26 and 27 include criminal offences. Do you have any views on the operability of those criminal offences?

Dr Graham: My only contribution here can be that similar offences in other jurisdictions have been held to be perfectly compatible with European human rights law.

Lord Sumption: I have no problem about the criminal-isation of people who abuse or distort the system, which is what those two clauses envisage.

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

Q Dr Graham, thank you for your written evidence, which was very helpful and stated your view that the strength of the clauses in the Bill make it compatible with the European convention on human rights in relation to article 2 on the right to life and article 14 on freedom from discrimination. Can you explain why you hold that view? What has been the view of the European Court of Human Rights in relation to assisted dying laws in other signatory states?

Dr Graham: There are two main challenges to this legislation, and to legislation like it, in relation to the European convention. As you say, one relates to article 2 and one relates to article 14. The article 2 challenge can be dismissed fairly quickly, because we have authority from the European Court saying that

“the right to life enshrined under Article 2 could not be interpreted as per se prohibiting the conditional decriminalisation of euthanasia.”

As a matter of precedent, that is fairly clear.

The trickier argument comes with article 14, which is the anti-discrimination right. There is an argument that goes something like this—I hope that those who hold this view think I am giving it a good airing. By allowing some groups to access assisted suicide, but not other groups—in this Bill, allowing terminally ill adults who meet the criteria in the Bill but not non-terminally ill adults who do not meet those criteria—you are treating two different groups in different ways, and that is discriminatory. There is an argument that, because of that, the courts would find that the Bill is unlawful and needs to be expanded—that groups outside of the terminally ill that meet the criteria of the Bill need to be given access to assisted suicide. I think that argument does not work for a few reasons, chief among which is that in our jurisdiction treating different groups differently is not unlawful. Treating different groups differently without good justification is unlawful.

The question of justification, while it is for judges and the courts, is a question on which judges have deferred heavily to Parliament, especially in areas that involve difficult social, ethical or moral issues. If I may be forgiven for reading from a court’s judgment one more time, in the case of SC the Supreme Court said:

“The ordinary approach…gives appropriate weight to…the primary decision-maker”—

the primary decision maker being Parliament—

“a degree of weight which will normally be substantial in…matters raising sensitive moral or ethical issues.”

We can all agree that this Bill involves sensitive moral or ethical issues.

My point is that when it comes to justification, courts are very deferential to Parliament. Courts think that Parliament should be deciding whether treating two groups in different ways is justified or not. That is why, in my view, there is no real truck to the argument that article 14—the anti-discrimination right—will be operative and cause the Bill to be declared incompatible with the convention in any way. I hope that is an adequate summary of my view.

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[Sean Woodcock]

Q Ms Hadi, at the start you said, “Nothing about us without us.” With regard to your previous testimony, I am interested to know how you feel that disabled voices have been heard, if they have been heard, in this process. What gaps have there been, if any? What can the Committee and the Bill do to fill those gaps?

Fazilet Hadi: To build on what Baroness Falkner said earlier, if this had been a Government Bill, we would obviously have had some pre consultation: we would have had a Green Paper and a 12-week consultation period, and we might have had engagement sessions with disabled people. The responses would then have been fed back, and we would then have heard about what the Government were going to do next. Obviously, because it is a private Member’s Bill, none of that has happened. I think there was a call for evidence at the beginning of January, but there was no time period, no framework and no accessible information.

Given that this Bill affects disabled people really, really profoundly—as I said earlier, disabled people often live with conditions that will become terminal illnesses—I feel that it has not been sufficient, and I would like to see much more discussion with disabled people and disabled people’s organisations. Ideally, I want to see the process that Baroness Falkner talked about happen, ideally with a commission and a Government Bill. If the Government are committed to this private Member’s Bill and want it to happen, they should take over and make it a proper part of their legislative agenda.

No, I do not think there has been sufficient dialogue and input from disabled people to this day. Having said that, the first we knew of this Bill was in October, it had its Second Reading on 29 November, and now we are here, so it has been so quick. A lot of disabled people—because we have sensory disabilities, learning disabilities and so on—need a bit more time to input. Thank you for the question.

[The Minister for Care (Stephen Kinnock)]

Q I want to make a brief point of clarification, based on what both Baroness Falkner and Ms Hadi said. In the debate on the motion on the money resolution in Parliament last week, I stood at the Dispatch Box and confirmed that the Government will publish an impact assessment before Report stage. We are obviously working on that with officials.

I will also add as a point of clarification that both myself and my ministerial colleague are working with the sponsor of the Bill to provide assistance and advice, purely on the workability and operational aspects of the Bill, and impacts of the Bill, should it gain Royal Assent. It is important for the purposes of this discussion that everybody is on the same page on that point. The Government are absolutely remaining neutral on the principle of the Bill, but it is our job to ensure that any Bill that passes through Parliament is workable and implementable as and when it gains Royal Assent.

Baroness Falkner: Will there be a human rights compatibility assessment as well as a delegated powers memorandum? Those are the other things that Government-sponsored legislation would have contained.

[Sarah Sackman]

We can take that suggestion away. Thank you.

[Daniel Francis]

Q Ms Hadi, we heard evidence this morning that the majority of disabled people support the Bill. I would like to hear your comments on that. What analysis do you have on whether the majority of disabled people support the Bill? Baroness Falkner, based on what we have just heard, if we had had the equality impact assessment before oral evidence was sought and before line-by-line scrutiny, would you have supported the approach more?

Baroness Falkner: My answer will be very brief. Every additional piece of analysis is helpful, because there are gaps in the analysis. The problem is that because we have not had a consultation, and because the process of deliberation was not transparent—it never will be with a private Member’s Bill—there is a sense of not knowing quite enough as to the reasoning behind—

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[The Chair]

Order. I think we can tease those issues out from our questions.

Dr Neerkin: My name is Jane Neerkin. I am a consultant in palliative care at UCH and the National Hospital for Neurology and Neurosurgery. I have been in palliative care for over 25 years, and I have also been in medical education as the training programme director for palliative medicine. I am pro assisted dying for terminally ill patients, although I have not actively campaigned for it. I am not here representing any organisation today, but to give a view and representation of my lived experience of working with terminally ill patients over the last 25 years.

Sam Royston: I am Sam Royston. I am the executive director for research and policy at Marie Curie. For those not aware, Marie Curie is an end-of-life care provider. We have hospices across the UK and deliver community nursing services to support people in their homes, and we also undertake research and policy work into issues affecting people’s end-of-life experience.

[Kit Malthouse]

Q Thank you all for coming. We have had a lot of discussion over the last day or so about eligibility. I think it was Hospice UK that said, in evidence to the Health and Social Care Committee, that pain in all circumstances could be alleviated. Do you believe that the way in which the Bill is framed captures those people correctly? For those people who are essentially beyond medical help and may be facing a painful end, and who want a different choice, is the eligibility criteria framed correctly? We will start with Mr Porter.

Toby Porter: I would defer to a physician on this point; I am a non-clinical person.

Dr Hussain: For the people I have seen in my end-of-life care practice who want assisted dying and have been persistent with that, even when they have accessed specialist palliative care—I have seen them, and they are a small handful—the decision is not usually related to symptoms. It is related to control being really important. I am not personally, in principle, against assisted dying. I think it is quite distressing, when control is important, to feel that you do not have that.

The other side of it is people much closer to the end of life, and this comes to your point. Perhaps they have had a long trajectory and are in the last few weeks. The symptoms may not be as best controlled as they want them to be, or they are just fed up, and the family have also got to the stage where they are accepting of that. I do not think the Bill is actually fit for purpose, and there are many of those than those who are doing it for control purposes. The length of time that it would take to go through the Bill would mean that they would not be eligible.

[Kit Malthouse]

Q How would you seek to improve the Bill in order to make them eligible?

Dr Hussain: I think it is really complex, isn’t it? The very existence of the Bill affects everyone who needs end-of-life care. It opens a Pandora’s box of risk. For those people, absolutely—when I am a physician and I am in front of them, I think, “What is the best palliative care I can provide for them?” However, when I put my population health hat on, I think about how it could impact the whole community. As I said, I work predominantly with an ethnically diverse population. I have gone into those communities and I have spoken to them about this Bill. What they say overwhelmingly to me is, “We’re scared. We’re really fearful that this is going to result in a disproportionate impact on our community. We have seen that through covid and we’re so scared. We already don’t access your services. We’re really worried that we won’t want to access them any more, and we won’t want to access the hospitals.”

That is the conundrum. If I want to open it up for that quite small proportion of people towards the end of life, I risk that much bigger group. That is why the decision is very tricky for me, even as a frontline clinician who is not against assisted dying in principle.

Dr Neerkin: I would like to break it down, thinking about what a terminally ill person is within the Bill. You have heard from quite a lot of people, and sometimes it is very clearcut, such as for cancer patients who have quite a clear trajectory in those last few months of life. It is much clearer for them than, maybe, for somebody with a neurological condition. People with those neurodegenerative disorders can go on for a much longer period of time. When you can recognise that they are already in the last six months of life, invariably by that point they may well have lost capacity to make those decisions. They may well not have the physical ability to take the medication at that time.

That is when you get those potential discrepancies: when you are defining “terminally ill” and whether or not one size fits every disease process for patients. I think that is aside from how much pain they are suffering, and whether or not it is because they want to retain control, it is also about the speed with which people will need to receive assisted dying. When you are rapidly deteriorating from a cancer prognosis, it may be that the two or three-week delay between different doctors, and everybody assessing it, might be too long. We have already heard, over the past couple of days, that people invariably die before they get the chance to take the medication themselves. However, there are also people who have a slower decline, who can actually have that long period of time for reflection, and that is quite important. I am not sure if that approaches the answer to your question in a slightly different way to Dr Hussain’s answer.

[Dr Opher]

Q I was interested to hear what you were saying about not all symptoms being controllable with palliative care. There is an argument that we do not have good enough palliative care, so we cannot bring in assisted dying. I think it may be a little spurious. What are your thoughts about the relationship between palliative care and assisted dying? That question can go to any of you.

Toby Porter: Can I take that? That is something we feel quite passionately about. People pointing out problems with palliative care in the UK is not a pro or anti position in this debate. It is a statement of fact. Clearly, extrapolating that through, an outcome in which someone chose an assisted death because of a real or imagined fear that they could not get pain relief or other symptom alleviation, or because their family would not get support through their illness, would clearly be a moral and practical disgrace for any country. I think that is why people who are passionate about palliative care would obviously be concerned, but I think they also would be very encouraged by the fact that everybody who spoke at the debate in November, without exception, expressed commitment for improved palliative care, irrespective of what they felt about the rights and wrongs of the motion that they were considering.

Dr Hussain: I do not think I have come across a palliative care physician who does not accept that not all symptoms can be managed, but there is a lot that we can do. In my experience and in that of a lot of my colleagues, this is a tiny proportion of patients. Usually there is stuff we can do. Often—in all those cases in my practice, I have admitted them to a hospice and they have had a holistic assessment. If needed, some of them have gone under carefully titrated sedation. There is a lot we can do. That does not mean that we do not need assisted dying. Like I say, there are patients I have come across who do need that.

The complexity here, though, is that making it available to those people that I would love to have it available for, because that is a good death for them, opens this risk to everyone. Like I say, ethnic minority communities are afraid that they are going to be targeted and they are saying that they will not access palliative care services. There are people who may want it because they feel coerced, even internally, because they feel like a burden, or due to social issues, especially those people who are structurally disadvantaged. That is what I find really difficult to weigh up. We cannot pretend that that is not going to happen. That is a much bigger proportion of the patients I see in Bradford.

Sam Royston: No matter how passionately they believe in assisted dying, no one I have ever spoken to has said they think that a good reason for choosing an assisted death is that people cannot access the care and support that they need at the end of life. Yet we know that that is the reality for far too many people at the moment. We know that about 90% of people who die need palliative care and it has been estimated that about one in four of them does not receive the care and support that they need. We know that many people are dying in emergency departments following unnecessary admissions to hospital, or dying in the back of an ambulance.

Beyond clinical support, we also know that there are many thousands of people for whom a terminal diagnosis means being pushed into poverty. We have just estimated that more than 100,000 people each year die while living in poverty. You are particularly likely to die in poverty if you are unfortunate enough to become terminally ill and are working age. In fact, you are much more likely to be in poverty if you are working age if you are terminally ill than if you are not.

Some of these problems are only going to grow in coming years. We project that over the coming 25 years, the need for palliative care is going to rise by about 25%. That is around 150,000 more people each year needing palliative care. And we have no plan—no plan at all—to address the scale of that challenge. This crisis in our health and social care system in the support we provide to dying people cannot be the reason for introducing assisted dying. We need to make sure that there is a plan to improve palliative care support for people at the end of life.

That is why we have proposed an additional clause to the Bill that would require an assessment of current availability, quality and distribution of health and care services for people at the end of life—something that, unbelievably, does not exist at the moment— quality standards for palliative and end-of-life care services; a national strategy for palliative care, which has not existed since 2008; a long-term sustainable funding strategy for palliative and end-of-care life care; and an approach to establishing NHS leadership for the delivery of that strategy. Those are the key things that we need to see to make sure that we have a palliative care system that is fit for the future.