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

Bambos Charalambous Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[Naz Shah]

Q Finally, to Dr Mullock, you have said that in all jurisdictions that have legalised assisted dying, the only meaningful gatekeeping is done by medical professionals. We only have retrospective monitoring that is primarily reliant on honest reporting, particularly discovering whether, or how frequently, coercion or flawed assessment has led to inappropriate assisted dying, and therefore challenging it, so it is impossible to know how many people have been sacrificed with lawful AD regimes. We have witnesses who have said there is no evidence of coercion, especially in examples in Australia and some US states where some assisted dying schemes have been implemented. When they say that, do you think they are being accurate?

Dr Mullock: I am sure they are being accurate in terms of the data before them. The problem is that it is difficult to know and, as Richard Robinson has pointed out, this is a hidden problem. In terms of the Bill that we are discussing, one possible weakness here is that it identifies, only very obviously, problematic conduct in terms of coercion or pressure exerted by another person, and actually the kind of undue influence that might occur might be very subtle. More needs to be done to recognise that and the subtle encouragement that might take place, where a relative might frame their support for the person seeking to die in terms of, “This will be better for you,” and, “Have you considered this?” That is not necessarily an example of clear abuse, so when the person seeking to die then consults the doctor, they are not going to characterise what has happened to them as coercion or abuse. More needs to be done to discuss with the person whether or not they have been encouraged by the people around them.

[Bambos Charalambous (Southgate and Wood Green) (Lab)]

Q This is a question to Professor House. I know you are opposed to the Bill, but if it were to pass, what role do you see for psychiatrists in a multidisciplinary approach?

Professor House: It is a difficult question, isn’t it? I have already said that there is an element of assessment that is needed here—that is not currently acknowledged very much in the Bill—of somebody’s psychological state. I say “psychological state”, which has these elements to it, one of which is the presence of diagnosable mental disorder—the top of the list of importance is depression, which is well known, particularly in the elderly, not to be that easy. Older people do not express distress necessarily as openly and obviously as younger people do. There is an element of the psychological bit of assessment, which you could call psychiatric assessment, that attempts to identify and diagnose mental disorders, particularly depressive disorders. That is particularly difficult in the elderly because they are sometimes what is called “masked”. There is then the element, which is mentioned in the Bill, of the difficulty at times of judging somebody’s mental capacity. The trouble with the ideas of incapacity and coercion, both of which float around a lot, is that they suggest a very high threshold. There is this middle ground, which we have just been hearing about, with a degree of impairment of judgment, or bias in judgment because of what is going on. Those are the sorts of areas where you would want a mental health professional and probably a psychiatrist, but a psychiatrist with a particular interest in this sort of area.

[Rebecca Paul (Reigate) (Con)]

Q My question is to Dr Mullock. You talked in your written evidence to this Committee—and you have just touched upon it—about the danger that someone could bring undue influence to bear on a person considering assisted dying, and that influence could be, in your words, “more subtle than outright coercion”. How do you think the Bill could be amended to avoid that danger?

Dr Mullock: I suggested in my written evidence that throughout the Bill, where it says that the person has a

“clear, settled and informed wish”,

you could add that the wish should be “clear, settled and autonomous”. Also, on whether the person has made the declaration voluntarily, it says that they must not have been “coerced or pressured”. You could add that they must not have been “encouraged, coerced or pressured”.

--- Later in debate ---

[Rebecca Paul]

Q I have a quick follow-up. What you said about palliative staff generally being against assisted dying was very interesting. Briefly, what are the drivers or key reasons for that?

Toby Porter: I am conscious that two palliative care doctors are sitting to my left, but I would say that it is quite constitutional. The World Health Organisation definition of palliative care talks about neither hastening nor prolonging death. There tend to be very strong feelings about that, but others might be better placed to answer.

Dr Hussain: I would echo what Sarah Cox said yesterday. For the vast majority, it is the worry about how it impacts all those other people. In principle, the majority of people I have spoken to—we see the patients who want it and would benefit. It is everyone else and the Pandora’s box of risk we are opening that is mainly our worry.

Dr Neerkin: People are worried that palliative care is going to lose funding based on this—that is one aspect. There was an interesting article in The Lancet last month by my colleague Libby Sallnow about the risks. Palliative care in the UK is gold standard relative to the rest of the world. If we start to change what we are doing here—introduce assisted dying and say that that is potentially a preference—that may therefore be replicated elsewhere without implementing palliative care. Those are some of the worries that people have, but that is not to say that, individually, people are not supportive.

[Bambos Charalambous]

Q Following on from what Mr Porter said about the provision of hospices, we are blessed with some wonderful hospices in north London that provide fantastic facilities. I agree with Mr Royston about the need for an assessment of palliative care funding right now; that is important. The fact about the funding is quite shocking. One of the local hospices has something that has been nicknamed a “death café”, where people get to discuss the end of life in a setting with friends and family members. On the issue of ethnic minorities not accessing services, what are your thoughts on being able to have settings where they can discuss different options at the end of care, get the support they need and make properly informed choices about the end of life? That question is to the whole panel.

[The Chair]

Order. I repeat that we have about 15 minutes left and four people left to ask questions, plus the previous question. Could hon. Members appoint who might answer the question? I do not want to cut off witnesses right at the end; it would be rude to do so. Who wants to take that question?

Dr Hussain: I will take that one. As I have said, in Bradford I have been going into the communities and meeting them in community groups where they already meet—it is their safe space. Over the last three to four years, we have done a series of workshops just opening it up: “What is death and dying like for you?” We have done that with the Pakistani women’s group in particular. We have recently moved on to go, “What stuff do you want to know about?” We had a series of four workshops where they could choose anything, so they talked about stuff such as religion and what services are available—none of them knew what services we had, which is shocking. But the workshop that they all voted for the most—and it was packed—was on benefits. These women are structurally so disadvantaged; they were asking about pensions and so we had benefits advisers come in. The women asked, “Please could we set this up monthly, for you to come speak to us and inform us?”, but it was a “No, we don’t have capacity.”

I have been asking for these workshops to be scaled up across Bradford. What do I get told? That it is not the hospices’ role, not the hospital’s, not the integrated care board’s. I have gone and presented my data and the feasibility with “This is how we can do it, this works really well”, but everyone says it is not their job. That is why I think the public health approach going into communities requires a completely different approach—it needs people who are seen as trustworthy and it requires us to be trustworthy, that is, we go in there, genuinely listen, and do stuff about the stuff talked about. I have done it and that is where the trust comes from.

It requires core funding, and the hospices cannot stretch to that—that is a huge issue. I have done it with a few groups, and to do that at scale in a place like Bradford—it absolutely has all the assets to do this—the funding has to happen. That is absolutely needed. We need to have that reciprocity, genuinely going in there and saying, “We’re here to hear, and we will act on that.”

Sam Royston: I agree with everything Jamilla says, as always. There are two connected issues here. One is about better whole-community conversations about death and dying, and death cafés are a fantastic example of that. I also think, incidentally, we need much better conversations about death, dying and bereavement in schools. We have worked recently with a number of other charities on getting bereavement education on the national curriculum, which I think would be a fantastic step forward. We need better whole-society conversations about death, dying and bereavement.

However, there is another conversation, which is about practical discussions about people’s preferences at the end of life—advance care planning conversations. We need to get much better at them—better at them happening and particularly better at them being acted on. We did a survey recently on why people do not have those conversations about their cares and wishes for their end-of-life preferences, and the key reason people said they did not have them was because they felt they would not be acted on. So we need to make sure that we are thinking about—and this includes ensuring access to palliative care support—how to enable those conversations, when they happen, to be acted on.

We also, incidentally—this is a bit of a technical point—need to make sure that those preferences are shared across services. There is very poor data sharing at the moment; ambulance services and the hospice needs to have that, and the GP and hospital need to know what people’s preferences are. We need to make sure that everyone involved in the care of that person is able to respond to those preferences.