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

Simon Opher Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[Sojan Joseph (Ashford) (Lab)]

Q May I come to Professor House for clarification? For someone who has had no primary diagnosis of a mental illness got diagnosed as terminally ill, is there the possibility that that condition could make them feel depressed or hopeless? At that stage, can that influence their decision-making capacity?

Professor House: It is certainly true that depressive states and depressive disorders are much commoner in people with severe physical illness than they are in the general population. Since there is not a lot of evidence that those depressive disorders cause the severe physical illness, we can assume that the depression is a response. About 20% or 30% of people are likely to have significant depressive symptoms.

We did a study in people after stroke, for example, and found that 10% of them were saying that they now thought their life was worthless and no longer worth living, and yet only a tiny proportion of those people go on to suicide. We must be able to look at the factors that protect people in that sort of situation. Yes—I think your question was, “How common is it, and is it a response to the circumstances and the illness?” The answer is yes, it is.

[Dr Simon Opher (Stroud) (Lab)]

Q First, I work as a GP with old people—I look after a nursing home— and I have to do adult safeguarding training every year. Secondly, more than 90% of psychological assessments are done in primary care. Professor Esmail, do you think that GPs are capable of spotting coercion and doing a psychological assessment?

Professor Esmail: Coercion is a difficult one, but absolutely, with all the provisos people have talked about and how sometimes it is hidden and all that sort of stuff, but I think we are always thinking about it —absolutely. Even when someone comes in and, as I said, asks for lasting power of attorney, it is definitely at the forefront of my mind as to who is making them do this, why and so on.

For psychological assessment, yes, as you said— but not only psychological assessment. Something like 52% of people choose to die at home, looked after by their GP, so in terms of palliation—I mean, I know people talk about how terrible things are, but it is also provided very well for the vast majority of people, who do not end up in the situations that people have been talking about. We do need to have perspective.

Yes, I absolutely think GPs have the skills to make those assessments and are doing them all the time, in a way. We now work as multidisciplinary teams, so we have access to a lot more information and expertise within our wider team to help us with those situations. The team is in a way very well placed for that, yes.

[Dr Opher]

And do they—

[The Chair]

Order. I have to take a question from another Member—Tom Gordon.

--- Later in debate ---

[The Chair]

I am allowing latitude to tease the matters out, but I am sure that the witnesses have heard what you have to say.

Baroness Falkner: I will briefly conclude. Any bit of additional analysis is welcome, but quite a lot of additional analysis needs to be done, and we would welcome that.

Fazilet Hadi: Disabled people are not a homogenous group. Just like the general population, disabled people will have all sorts of views. Probably some will be very informed about this debate, and others will not be. Our position as Disability Rights UK and the disabled people’s movement is not about counting how many people are supportive or not supportive; it is much more about the knowledge and evidence that we have about how society works, how discrimination works, how equality works, and the barriers that we face.

I take the point that you are looking at the clauses of the Bill, but you were testing the real-world implementation and implications of the Bill when I was listening to the earlier session. I will just say some of the things that are in the real world at the moment, and these have been mentioned: insufficient social care and healthcare; insufficient palliative care; rampant and worsening health inequalities; disability discrimination, and the devaluing of disabled lives. We only have to go back five years, to the covid pandemic, to see how disabled lives were devalued. We all know about the “Do not attempt resuscitation” notices. We all know that disabled people sometimes did not receive access to critical care. We all know that young people with learning disabilities were disproportionately dying. I really think the real-world implications always have to be tested. This Bill is not an abstract exercise; it will land in a society that is rife with inequality.

[Dr Opher]

Q It seems clear from an expert in European law that the human rights convention is covered by this legislation, so we have got some very good advice there. I would just like to confirm that, if we could, Dr Graham. Also, to all of you: could we have some positive things that we could put in the Bill to make it safer? We have been talking about the Bill but this is a practical session where we need to improve the Bill. First of all to Dr Graham.

[The Chair]

Order. Can you ask through the Chair, and I will decide who can speak? We have four minutes left. I do not want to cut any of the witnesses off, so, with the greatest respect, can you leave the direction of the meeting to me, please?

Dr Graham: I can confirm that it is my view and the view of many of my colleagues—many of my colleagues are experts of 40 or 50 years’ standing in this area—that there is no serious possibility that the Bill will breach the European convention on human rights or the rights under the Human Rights Act. That remains my view.

Lord Sumption: It is also my own view. I was actually very surprised to see the contrary suggested.

Baroness Falkner: Well, I suppose the contrary suggestion came from me. I can only repeat that there are several articles that we consider are engaged: 2, 3, 8, 9 and 14. But of course they have not been tested in court. Part of the consideration that Parliament has to give is that once the Bill becomes an Act, there will be an opportunity to test all of these human rights articles in court and we will get a more definitive ruling. Because so few jurisdictions have incorporated this kind of legislation, we do not have as clear a picture as we want. But of course the interpretation of Dr Graham on the European Court of Human Rights is correct—we agree with that.

--- Later in debate ---

[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.