Copenhagen was home to Hans Christian Anderson and Soren Kierkegaard, so at this conference I was hoping for a stimulating mix of narrative and reflection. That was certainly present in some of the sessions. There were good stories to be told and some deep thinking in evidence about the challenges that palliative care faces.
The mood
The conference was upbeat. Established academic groups were well represented, there was a confidence about progress being made and a sense that one year on from the World Health Assembly resolution, palliative care was gaining ground and recognition. A record number of people attended and there was a packed programme of presentations and poster sessions. Achievements were celebrated, new contributors were recognised and the participants had come from all over the world.
At the same time there was evidence that palliative care is still a relatively young field of activity. I saw many examples where colleagues were engaged in articulating not only what palliative care is but also what it ought to be. I take one example here.
The question of public health
Luc Deliens gave an early plenary which underlined the need for palliative care to engage with the model of public health.This is an often repeated stetement, but it rarely gets ‘unpacked’. What is this link between palliative care and public health?
There is concern that palliative care is still not well understood, it requires to be integrated within health care systems and it needs measurable outcomes. Aligning palliative care with the thinking of public health seems to be a way forward. As Kathy Foley said in acknowledging her lifetime award at the conference – “I stand to the shoulders of all of you who have advocated making palliative care not just a public health interest but a public health issue”.
My sense is that this ‘public health’ articulates closely with that of the World Health Organisation and is the stuff of the WHA resolution. In palliative care terms, it has four components – the so-called WHO ‘foundation measures’: drug availability, education, policies and (added later) implementation. Against these measures, there is still much progress to be made in establishing palliative care provision and making it fully available at the population level through the health care systems of individual countries. Over 30 years since the measures were first articulated, one wonders whether the paradigm is right.
Enter Allan Kellehear.Like Luc Deliens, he is a sociologist, but his notion of public health seems rather different. Kellehear, who also spoke at the conference, begins from the perspective that for much of our lives, including at the end of them, most of us are not face to face with health care professionals and services. Rather, we encounter illness, loss and mortality as social experiences that are shaped primarily by culture, by geography, by beliefs, by communities and relationships. Within this, medicine and medical care can be quite small elements. When he calls for a public health model of palliative care is he therefore talking about something rather different?
For Kellehear palliative care seldom embraces public health ideas about community engagement, community development, and citizenship. He points us to the significance of community and ideas about ‘prevention, harm-reduction and early intervention strategies to address the social epidemiology of death, dying, bereavement and long-term caregiving’. He argues that this approach is gaining ground worldwide, and significantly it is central to the international public health and palliative care conference taking place one week after the Copenhagen meeting, in Bristol, UK.
Let a thousand flowers bloom?
We might take the plurality of debate around these issues as a sign of strength or weakness. A willingness to discuss openly the aims, boundaries and contours of the field is for many an indicator of insight and reflexivity. For others it denotes confusion, mission creep and an inability to articulate to others the ‘core message’ of palliative care. At the moment I am taking an eclectic view of all this – let a thousand flowers bloom.
But it is curious that a palliative care that is uncertain about its boundaries and definitions is seeking alliances with another part of health discourse – public health – around which so many similar debates revolve and swirl. As Erika Blacksher wrote as recently as 2014: ‘There is no settled account or definition of public health’. It seems important therefore to clarify with which ‘public health’ it would be desirable for palliative care to align, and to what ends.
Hans Christian Anderson wrote of the eleven brothers who were transformed to swans each day and returned to human form by night. Soren Kierkegaard reminded us that life must be lived prospectively, but can only be understood retrospectively. Palliative care is clearly undergoing transformation as it develops – but to what effect we may only know in the future.
Thanks for this, David. Thought provoking as always. Like you, I’ve been observing palliative care define itself variously over many years. Today,the question ‘What is palliative care?’ reminds me of heated discussion with friends at the weekend on the subject of ‘What is poetry?’ and I’ve had similar discussions about art. I think Bertrand Russell said, when asked ‘what is philosophy?’ ‘It’s what philosophers do.’ And Marcel Duchamp, famously, said that art is what the artist says it is (or something like that). These responses at once simplify and hint at complexity. The questions are almost impossible to answer meaningfully and comprehensively. I have often repeated to students, when considering the ‘definition’ of some phenomenon, a story one of my philosophy teachers told about Greek philosophers discussing the definition of ‘Man’. Each week, somebody would offer a definition and, commonly, somebody else would offer a rebuttal. One offering, proudly made as though it was going to be the last word, was ‘Man is a featherless biped.’ The next week Diogenes the Cynic rebutted the definition with a plucked chicken.
Anyway, back to palliative care. I want to write something about sitting with a man who has prostate cancer, lung and liver secondaries and who told me about his ‘total pain’; not just the pain in his body, but the pain of knowing he is going to die soon (he says he was given three days to live, six months ago) and that he is going to leave behind his beloved grandson. Above and beyond all his physical pain, he knows he is dying and he knows there is no medicine he can take to relieve the pain of that. I found myself wondering what service there is, what interventions, to help him die? Where are the ‘midwives for the dying’ that we’ve seen recommended? Must he simply rely on his family and friends? Are they up to the job? What about their own needs? This man is embedded in a mature and responsive health service with access to oncologists, palliative care specialists and primary care. But, when it comes to facing his end, he is still in need.
Thank you Nic. These comments too are characteristically thoughtful. It is good to see you engaging with our posts. I am at the moment trying to come up with some clear statements of my own about palliative care – if only to clarify my own assumptions and understanding. So watch the blog for more on that. The man you describe sounds like he should be ‘getting’ palliative care. He has many of the hallmarks of a palliative care ‘patient’. What are your thoughts on why his needs are not being met?
He is ‘getting’ palliative care! Without wanting to be critical of any of the practitioners serving him at the moment, my general observation is that many of us are still not prepared (in two senses, willing enough or skilful enough) to help someone face the reality of their imminent death and all the suffering that brings with it; we’re very focused on ‘symptoms’ that we feel we can ‘manage’ in some way. But when it comes to accompaniment, to real comfort-giving, to helping someone have courage, I think we fall down. Maybe it’s just too hard.
[…] rather than a singular future of global end of life care. When my colleague Prof. David Clark in a recent post said ‘Let a thousand flowers bloom’ in palliative care he indicated a similar thought. I […]
[…] from 11th – 16th May 2015. We at the Glasgow End of Life Studies Group are pleased that Professor David Clark attended the EAPC conference, and Dr Shahaduz Zaman attended the conference in Bristol. Both have commented on their experiences […]