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

Rebecca Paul Excerpts

Committee stage
Wednesday 29th January 2025 Public Bill Committees

[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”.

[Rebecca Paul]

Q Not to put you on the spot too much, but I have tabled amendment 82 and new clause 5 to address the encouragement point. Have you had a chance to look at those? If you have, do they adequately address some of your concerns?

Dr Mullock: I am so sorry; I have not had a chance to look at that.

[Rebecca Paul]

Don’t worry. Thank you very much.

[Lewis Atkinson (Sunderland Central) (Lab)]

Q Could I ask Dr Mullock another question? I was interested in what you said about your involvement with citizens’ juries, both here and elsewhere. As we as a Committee and Parliament are weighing up some of these issues, such as the points on autonomy and safeguards, where do you think the public settle on those when they investigate them in depth? In particular, can you say a bit about the eligibility criteria being six months with a terminal illness?

Dr Mullock: I am sorry; what do you mean by how the public settle on them?

--- Later in debate ---

[Lewis Atkinson]

No.

[Rebecca Paul]

Q My question is for Toby Porter, and it is probably quite timely. What are the risks and impact for the hospice sector if assisted dying becomes legal? Can you talk broadly about the implications, touching on the impact on the workforce and patients?

Toby Porter: In England and Wales, there are about 190 hospice charities and probably about 16,000 care staff, who will represent every different opinion on the spectrum. Hospice UK and most hospices have a position of no collective view on whether the law should change.

To summarise three impact areas, the first and most important one—this is why our written evidence stressed the need to sustain the public conversation about death and dying that this debate has started—is that, if people are made more comfortable, there is a real opportunity to talk about death and dying, as well as what services are available for everybody, including those who may want an assisted death. There is a real opportunity to improve palliative care, because most people in palliative and hospice care think that the golden thread is increasing people’s knowledge, ability and willingness to talk about what is happening to them and what services can help them.

Conversely, there is a risk. Modern palliative medicine and hospice care have for 30 or 40 years been working very hard to get people to access palliative care early—as soon as possible after diagnosis of a life-limiting condition. The language of, “I’m going to fight this”, “I’m going to defeat this cancer”, “I’m going to battle” or “I’m stronger than this” shows that we have a whole culture that works against that early access. Even today, people still sometimes associate accessing hospice care with admitting defeat and going too early. If hospices were involved in assisted dying, there is a theoretical risk that that would just reinforce an inaccurate perception about hospice and palliative care: the myth that you are helped along your way by doctors in hospices and hospitals. That is one risk.

More briefly, the second risk relates to the duty of care. What do you need for hospice and palliative care services? You need adequate resourcing, which means staff and finances. In terms of staff, the real fragility in the hospice and palliative care sector is a shortage of clinical staff—that is shared nationally with the NHS and other healthcare providers. You will know from Sarah Cox’s evidence that the majority of palliative care consultants hold views against assisted dying, many of them very strongly. If the consultants felt, for example, that they could not keep their distance from assisted dying in a 12-bed hospice unit in the way they could in an 800-bed hospital, you could very easily see that if this was not done properly and the consultants deserted the hospice sector, you could no longer offer the specialist care that is so important to the Minister, the NHS and every health and social care provider.

Thirdly, at the moment, every hospice operates with not just the consent, but the active financial support of its local community. This is, perfectly legitimately, a controversial issue, and there are very strong feelings on both sides. At the moment, we depend on charity to fund about 65% or 70%. There will be people who would stop funding hospices because they did not offer this service, if it became legal, and there will be people—this has already happened—who would stop funding hospices if they did. Those are the main strategic and operational challenges of the hospice sector. I hope you will think about how they might be mitigated in your deliberations.

[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.