Doctors and end-of-life experts report that palliative care is hugely reliant on community-led funding. Nancy Preston, a Professor of Supportive and Palliative Care, told a select committee last year that 75 per cent of the services in England are supported by money raised through tombolas. Compared to other parts of our healthcare system, palliative care receives significantly less investment from the NHS. Given this chronically underfunded but critical part of medical care in Britain, is the country ready to consider the knotty question of assisted dying?
This Q&A is adapted from Insight, a new weekly series from the New Statesman Podcast. Kate Lamble speaks to two senior palliative care professionals – Nancy Preston and Katharine Sleeman. The conversation has been edited for clarity and brevity. You can listen to the full version wherever you get your podcasts.
Kate Lamble: Is it possible for politicians to have this conversation while palliative care is in the situation you describe?
Katherine Sleeman: It’s possible for them to do it, but they shouldn’t. I am worried that there is a real possibility that if assisted dying comes in, people will be nudged towards an assisted death simply because they can’t get the healthcare that they need. We did a poll that came out last week, and we found that 61 per cent of the public said they were worried that people might feel pressured into an assisted death. Me too. I’m worried about that. I think it’s at best naive to say that the decision to have an assisted death would never be influenced by external pressure. And I think we need to think about what that external pressure might be. Yes, it might be another person, but that external pressure might be the system, too.
KL: We are talking about two things here. The complexities around end-of-life decisions for patients and families. But this is also a question for healthcare workers as well.
KS: Some people working in palliative care, who are part of delivering assisted dying, feel that things are working OK; some feel that things that aren’t working OK. So there’s a range of views. There’s something interesting to unpick around why people in palliative care particularly are so often against assisted dying. About 80 per cent of palliative care doctors in the UK are country are against assisted dying.
KL: Do you have any insight into why that might be?
KS: I think it’s because in palliative care, we work every day with people who are not only deteriorating and dying, but at their most vulnerable. Many of the patients I see are old, many are quite frail; they may have fluctuating capacity, but they all have good days and bad days. They all have moments of despair and moments of hope. And I think that we see that vulnerability every day in palliative care. Other types of medical professionals are far less exposed to those kinds of issues. That’s my understanding.
KL: Nancy, I think you’ve done some research into this in the Netherlands, and where places where assisted dying is legal.
Nancy Preston: Even for people who are in favour, there are limits. And some people can manage to do multiple assisted deaths. Others will say, “I can only manage [doing it] about once a year and then I can get myself back into it and do it again.” Some said they moved away from that area of practice altogether. This is a real worry I have within palliative care, that doctors start moving out, because they feel that they don’t want to be faced with these conversations.
KS: There is a worry that by introducing assisted dying as part of palliative care, we’ll really obliterate trust in palliative care among the ordinary dying, the ordinary half a million people who die every year in this country, the people who aren’t interested in assisted dying but might be a bit worried about it. We know that people already conflate assisted dying with palliative care, so public understanding about palliative care is still not very good. We did a study earlier this year that showed that, in the UK, one in five people from minority ethnic groups think palliative care means giving you drugs to kill you. We’ve seen trust in palliative care suffer in countries that have legalised assisted dying. I think it’s potentially dangerous and fraught if people don’t have a clear idea about what assisted dying is, what palliative care is, and what the difference between the two is.
KL: We’ve talked about the lack of provision, the lack of funding, the lack of conversation, the concerns from staff themselves. Bearing in mind all of those things, is the UK equipped to potentially have a bill on assisted dying introduced anytime soon?
NP: The “how” is as important as the “should”. We don’t know if it is implementable. And we have had big issues in the past with palliative care pathways already. Do we want another problem where we have poor implementation of something that appeals in theory?
KS: There’s a tendency for this debate to just become reduced to binary arguments: “Is this morally OK: yes or no?”. And we have to move on from that. We have to talk about some of the complexities here, the practical implications. We hear: “Yes, we should legalise assisted dying with appropriate safeguards” all the time. What I would like to understand is which safeguards are actually appropriate. How safe are they and how safe is safe enough for us as a society? And that, to me, is the kind of knotty, uncomfortable question that we have to be asking now, rather than after the House of Commons has voted “yes”.
Content from our partners
Related
