I have just attended for the first time the annual meeting of the American Academy of Hospice and Palliative Medicine, held jointly with the Hospice and Palliative Nurses Association. The venue was Philadelphia – the city of brotherly love – and over 3,000 people attended, mainly from the USA, but with small numbers from some 22 other countries. As far as I could see, Professor Jane Seymour and I were the only two people present from the United Kingdom.
In keeping with the location, an underlying theme of the meeting was that of unity and consensus. In particular the organisers were keen to portray the worlds of hospice and palliative care as two powerful and complementary forces, working in harmony to promote quality care and quality of life for patients with serious and life-threatening illness. Two slogans captured this: ‘hospice heroes’ and ‘palliative power’. You could even buy pairs of socks with the branding, though I noticed that it was a pair of one or the other, rather than one for each foot. Promoting this shared approach is an interesting stance to take, for despite their easy conjunction in terms such as ‘hospice-palliative care’ and their shared history, the goals, cultures and methods of ‘hospice’ and ‘palliative care’ can differ significantly.
I have set out some of these points of difference in a recent book chapter. If hospice is death embracing, palliative care emphasises quality of life; whereas hospice frequently draws on a social model, for palliative care the model is increasingly medical; if hospice promotes community engagement, palliative care supports professional development; if hospice valorises civil society, palliative care embraces public health. And so on. These have become salient distinctions over time, but they tend to get glossed over and are sometimes difficult to discuss in public.
Hospice in the USA has made big strides since it was first recognised for Medicare funding in 1982. Today approaching 50% of all people who die in America do so whilst in receipt of hospice services, even though this may only be for a few days. At the same time Hospice Medicare has become a deeply problematic funding mechanism, as I have outlined in a previous post on this blog.
Palliative care provision has also been growing rapidly in America, chiefly in hospital settings and regular reports appear tracking the steady expansion of these (mainly consult) services across the country. In contrast to hospice however, these services lack an obvious reimbursement scheme, and are very often introduced following laborious and energy-sapping lobbying from local clinical activists, sometimes helped by philanthropic subvention.
Driven by groups such as the Center to Advance Palliative Care, services in this context are increasingly defined not as an end of life intervention, but as an ‘extra layer of support to address the inevitable consequences and side effects of serious illness’. This newer definition has involved an explicit ‘de-coupling’ from end of life care. This is interestingly prominent on the Wikipedia entry for palliative care and clearly formulated in the short animation film entitled ‘Palliative care: you are a bridge’.
At the Philadelphia meeting there was also a strong articulation of the idea that palliative care must not simply deliver a service to patients and families but must also be the guarantor and conscience of quality person-centred care across the American healthcare system. Its job is to go to scale by teaching others in its approach and also monitoring their effectiveness.
Atul Gawande, in a compelling plenary session that brought forth a standing ovation from the packed hall, spoke of a trial being conducted by his Ariadne Lab which is randomising a group of doctors to a short educational intervention in which they are supported to have significant conversations with (appropriately identified) patients about end of life goals and concerns. These focus around the key questions articulated in his book, Being Mortal: ‘What is your understanding of where you are with your condition or your illness at this time?” ; “What are your fears and worries for the future?”; “What are your goals if time is short?”; and “What outcomes would be unacceptable to you?”
By getting doctors of all stripes to adopt such approaches, the notion here is to develop a scaleable solution to the inadequacies of a system which is perceived to be failing patients with advanced disease. Gawande is a powerful advocate for hospice and palliative care and has rightly focussed on what medicine must do to support patients ‘when time is short’. This is a pressing and urgent issue. Recent research from the Altarum Institute is showing that at a population level in the United States, suffering at the end of life (as measured by symptoms such as pain and depression) may be increasing over time.
Gawande brings to this challenge an enthusiasm for the checklist approach and a passion for improvement science. I believe he is right to direct this towards end of life concerns. What then of the ‘extra layer of support’ throughout the disease trajectory? Is this a legitimate role for specialist palliative care? In the case of older people, say, how would it differ from the role of geriatrics? And is it sensible given the failure of, as Gawande puts it, ‘a fifty year experiment to medicalise dying’ to focus on such a broad agenda? Why ‘uncouple’ from end of life care, when in the last year of life there is still so much improvement in care still to be made?
The hidden curriculum of the conference seemed to be seeking to reconcile these two orientations. Was it successful? I am not sure. For some, the ‘extra layer of support’ with under-pinning evidence – exemplified in the study by Jennifer Temel and colleagues which showed increased survival in the palliative care group, seems to play into the hands (as one person I spoke to put it) of the ‘medical industrial complex’. By contrast, when Gawande in his lecture mocked the American nursing home that pureed all its food for residents and declaimed ‘give ‘em a damned cookie’, there were shouts of ‘Amen!’ from behind me.
Combined, hospice and palliative care are indeed a broad church. But one senses schism and theological disagreement. As the baby boomers encounter their old age and contemplate their mortality, there is growing public debate about what must be done. There is much talk about choice – and of course that includes access to assisted dying. There was an awkward moment when Gawande expressed his sympathy for that option in situations where it would be ‘cruel’ to deny it. A hesitant ripple of applause resulted. But in the margins of the meeting some expressed deep concern about the spread of assisted dying legislation, now to five US states and potentially within a year to the whole of Canada.
In short, these are interesting times for hospice and palliative care in the American context. My own presence at the conference was to give a detailed account of the work of the Project on Death in America (1995-2004). I prefaced this with a description drawn from Emily Abel’s book, The Inevitable Hour, which showed how American medicine has had a problematic relationship to the dying not for 50, but at least for 100 years. The goal of the PDIA was ‘to transform the culture of dying’ in the USA. I concluded that the project did not succeed in this but that it did help to transform the field of hospice-palliative care, through the efforts of a vibrant group of Faculty Scholars and leaders in medicine, nursing and social work, who fostered extensive programmes of education, accreditation, research, and service innovation.
I suspect there are some deep-seated cultural factors at work in the apparent division between death-oriented hospice and life-oriented palliative care. These should be studied more and require deeper understanding, without raising antagonism within the relevant constituencies. I would contend that the differences cannot be reduced to explanations about funding streams or appeals to particular kinds of evidence – or even the rationality of argument on either side. Such a suggestion would probably be rejected by many at the conference. But to the sociological observer, the need for a deeper explanation seems pressing. I believe the differences will continue to be consequential for future developments in the field in the USA. Whether and in what ways they are reconciled may be vital to future sustainability.