In 1961 Cicely Saunders, in a short article written for a general audience, observed: ‘A society which shuns the dying must have an incomplete philosophy’ [1].
The remark is loaded with import. In her observation, ‘the dying’, seem to constitute a known social category. Not only neglected, they are persistently avoided, ignored, or rejected through antipathy or distaste. At the time this was often seen in hospital ward rounds where the terminally ill patient was quietly passed by, as clinicians and students moved on to a case that might prove of greater interest and more amenable to intervention. For ‘the dying’ by contrast, ‘nothing more could be done’.
Cicely Saunders saw this as emblematic of a wider orientation. She asserted that to ‘shun’ the dying is much more than an individual matter, It is to diminish some aspect of the guiding principles that govern our behaviour within society as a whole. In my view, it is reasonable therefore, to argue that from her perspective, our disposition towards the dying might be seen as part of a moral order.
By moral order I mean a body of unwritten social mores and conventions which serve to maintain social cohesion. I want to look at this moral order of dying at three levels: micro, meso and macro.
Micro
The first refers to individuals engaging with each other at the local and inter-personal level. This is the world of private concerns, relationships, personal identity and values. In the context of a dying person it captures the dynamics of family relations, personal beliefs and assumptions, concerns and priorities. It includes the individual experience of illness, treatment, suffering and the processes of making sense and meaning out of challenging circumstances. And of course it relates to how carers of all kinds interact with a dying person and those around them, encompassing the whole complex area of the giving and receiving of care.
Meso
The second includes the dimensions of community and association among groups of people defined by place, interest or identity as well as the social and economic organisation of public and private services, civil society, cultural practices and modes of organisation. In relation to the matter of dying – it refers to how and in what ways health and social care are organised, the work of hospices, palliative care services, the professional roles and dispositions of practitioners and the knowledge that informs their work. It can also embrace collective actions, like the move towards ‘compassionate communities’, or the many cultural interventions relating to dying and death that are manifest in societies around the world.
Macro
This aspect of the moral order involves the societal level of organisation. We think here of the powerful structures that shape the wider context – politics, government, policies, markets, law and international relations. This includes the effects of globalisation, migration, global health, disease and disadvantage, poverty, war, and humanitarian crisis. Dying people are influenced by these dimensions in many ways. Societal factors determine the resources for care at the end of life, the legal circumstances in which it is practised and the political priority that it is given. This is manifest in massive global inequities in palliative care development, service provision and impact. It is also visible in individual jurisdictions with and without policies, laws, guidelines, and professional bodies to promote palliative care.
There is a wider sociological point to be made here: death threatens the social order, at all levels. It disrupts, disturbs, and has the potential to break up the veneer of cohesion that holds society together. For example the spouse who cannot comes to terms with the suffering and death of her partner, the community or group that must re-adjust following the loss of a prominent leader, or the nation-state that has to re-organise in the face of mass death caused by natural disaster, terrorist attack, war or humanitarian catastrophe.
Palliative care and the moral order of dying
It is this wider moral order that can often get lost when palliative care colleagues engage ‘in-depth’ with some very specific issue or problem. In asserting its values, knowledge base and ‘offering’, palliative care can easily lose sight of the wider context in which it is located. Contrary to some assumptions, the wider public is not particularly interested in issues like ‘outcome measurement’, ‘indicators of development’, ‘opioid rotation’ or ‘palliative sedation’ – to name just a few examples.
There is plenty of evidence however that the public is interested in issues like how care is organised and coordinated, in ‘dignity’ and ‘choice’ in dying, in the difference between palliative care and assisted dying. There is interest too in the unfairness of differential access to services – elite dying for some, neglect or even preventable death for others. it is no surprise therefore that, particularly in the ‘global north’, how we die is currently a contested space, surrounded by much debate over the extent to which we can have control of the manner, place, timing and circumstances of our death.
These contestations are being shaped by changing epidemiological, demographic and clinical trends. They are influenced by new discourses of dying that promote autonomy and person centred care. They are framed within policy analyses that grapple with the enormity of providing quality end of life care ‘at scale’ in the face of massive need.
Within these scenarios, modern palliative care holds a paradoxical position. It focuses on quality of life, rather than the good death, and in some instances is defined as no more or less than an ‘extra layer of support’ through the trajectory of illness. It is person centred, but opposes assisted dying. It is a specialty that remains undecided about its definition, boundaries, and levels. It looks assured when caring for the individual patient and family, but is much less convincing when it adopts public health and strategic orientations at the population level. It declares its goal as ‘palliative care for all’ but is struggling to reach many who might benefit from it.
Can palliative care improve society?
Cicely Saunders thought it could. For her, it spoke to things forgotten and neglected in medicine, diminished within modern culture and eroded within contemporary values. Palliative care could be a beneficial force not only for patients and families but also for the wider social good. Its difficulty today however is in being torn between the orientation of a medical specialty on the one hand, and that of a social movement, on the other. It is a ‘zero sum’ game. If palliative care gains ground as a specialty, it is likely to be eroded as a movement. If it seeks the expanded influence of a movement, it risks losing credibility as a specialty.
What conditions are necessary for the relationship between palliative care and society to become a ‘win win’ game? Can we identify the principles and concepts of palliative care that all stakeholders can share, when thinking through the complex disagreements and challenges we now face? If so, this needs to be demonstrable not only at the micro, but also the meso and macro levels. Palliative care can improve society, but only once it has gained sufficient ground to merit wide professional endorsement and a level of public engagement that establishes its credibility in the wider context. In short, to improve society, palliative care requires both ‘content’ and ‘face’ validity.
Reference
[1] Saunders, C. (1961) And from sudden death … Frontier, Winter [no page numbers]
Further reading
Clark, D., Inbadas, H. , Colburn, B., Forrest, C., Richards, N. , Whitelaw, S. and Zaman, S. (2017) Interventions at the end of life – a taxonomy for ‘overlapping consensus’. Wellcome Open Research, 2, 7. (doi:10.12688/wellcomeopenres.10722.1) https://wellcomeopenresearch.org/articles/2-7/v1
Seymour J and Clark D. The Liverpool Care Pathway for the Dying Patient: a critical analysis of its rise, demise and legacy in England [version 1; referees: awaiting peer review]. Wellcome Open Research 2018, 3:15 (doi: 10.12688/wellcomeopenres.13940.1) https://wellcomeopenresearch.org/articles/3-15
Zaman, S Inbadas, H Whitelaw, A Clark, D (2017) Common or multiple futures for end of life around the world? Ideas from the ‘waiting room of history’. Social Science and Medicine, Vol 17: 72-79. https://www.sciencedirect.com/science/article/pii/S0277953616306219
Zaman S, Whitelaw A, Richards N, et al A moment for compassion: emerging rhetorics in end-of-life care. Medical Humanities Published Online First: 10 February 2018. doi: 10.1136/medhum-2017-011329 http://mh.bmj.com/content/early/2018/02/10/medhum-2017-011329.info
This is an abridged version of an invited talk given by David Clark at a conference held by the Pontifical Academy for Life working group on palliative care, which took place in the Vatican 29 February – 1 March 2018. See – http://www.academyforlife.va/content/pav/en.html
Photograph – The Teutonic Cemetery inside the Vatican (David Clark)