So I’ve just read this article in KevinMD about oncology and palliative care: The Tension Between Oncology and Palliative Care
Whilst I agree with the overall sentiment I think we can generally do better. First of all – this isn’t an issue unique to oncology – it is important for all sub-specialties and all patients/consumers where end-of-life is an issue.
Secondly this is a societal issue. Bottom-line is that nobody lives forever and so thinking about these things is important for both individuals and society. Society needs to get beyond the notion that technology trumps death.
Thirdly we need to move beyond palliative care as end-of-life care to the notion that supportive and symptomatic care is useful throughout the whole illness. This will both improve outcomes overall and prevent harm.
In an ideal world there is no oncology versus palliative care, there is just care.
Trawling the web and social media I’ve come across a fascinating community of individuals interested in death and death-care. The spectrum of discussions is broad, ranging from advanced care directives, through death midwifery and to designer garments to take to the grave. This has led me to think about how my patients die.
Some, but actually not many patients die at home with their families. Sadly, some die at home with nobody. Many die in hospital or hospital-like settings including hospice. More often than not there is a small single room which is quickly cramped when more than 2 or 3 family and friends are present. Especially in hospitals it is very medical and not very individualised right up to the end. Not much of the person is evident in these rooms.
I’m not really sure why this is the case. Perhaps the patients are too sick to direct their care or maybe we perceive them to not be interested in the usual things of life.
Palliative care focuses on preventing and relieving suffering and is effective therapy for dying people. But palliation seems to have been framed largely from the perspective of maintaining quality of life and alleviating symptoms rather than pursuing a hedonistic approach. By this, I mean, we don’t pay much attention to the provision of pleasure and pleasurable experiences for the dying person. This is despite recent literature from the dignity therapy movement suggesting the importance of pleasure for the dying person.
Our cemeteries have water views and garden vistas but our living dying do not. Julian Barnes has said “We spend time thinking about our funeral music; less about which music we wish to do our dying to”. For those that can still eat and drink we provide unpalatable hospital food and often deny them the beverages of their choice. We sometimes think about specific ethnic needs but we don’t think about sub-cultural needs – dying in familiar surrounding for the outdoors person or the Goth. Maybe the dying don’t want to be dressed in backless white gowns but would prefer their own clothes, maybe even dress for the occasion one last time.
So maybe there is a place for designer death-care. Personalised services might help people at the end-of-life not only die with dignity and without suffering but also with maintenance of identify and experiences of pleasure right to the end. Existing practitioners could incorporate into their rounds the question – has anything brought you any pleasure today? what could we do to bring you some pleasure?
Pursuing a palliative approach is good – pursuing it with a pinch of hedonism might be better.