This guest blog post is by Dr Guy Schofield, a palliative care registrar from the UK who is working on his PhD in Uganda funded by a Wellcome Trust Society and Ethics Fellowship.
I sit here writing this in Kampala at the Institute of Hospice and Palliative Care in Africa (IHPCA), nestled in the compound of Hospice Africa Uganda, a few weeks into my PhD, which I am undertaking during the latter stages of my clinical training as a palliative medicine physician in London. It’s also 10 days after the Lancet Commission report on palliative care and pain relief has been published which is an excellent and timely piece of work demonstrating the need for palliative care and appropriate access to opioid-based analgesia across the globe 1. The first thing I learnt during my philosophy training is to define all the terms in the question, and this piece is a reflection on my opening attempts to define palliative care as I practice it but, more importantly, to investigate the narratives of palliative care in global and cross-cultural contexts.
Palliative care is rightfully seen as a key component of universal health coverage and significant efforts are underway to expand access and provision, with new hospital units, hospices and community organisations being set up across the world.
Given my background, you would be forgiven for thinking I should have a good grasp of what palliative care is by now. However, the more time I spend thinking about it the less sure I am that I understand what it is. Is it a holistic approach to care, or is it simply a clinical speciality? Is it still a response to the overmedicalisation of life and death, or now simply too often part of that over-medicalisation? How much of what I do clinically day-to-day is ‘specialist’, or perhaps specific to those with life-limiting illnesses, and how much is simply good holistic care?
Inside the problems of defining palliative care are all sorts of related questions; what sort of services and what mixture of staff and volunteers should deliver palliative care? And who should it be delivered to? This question includes difficulties in defining boundaries between specialist palliative care services and what’s often called generalist palliative care. The former is usually provided by ’specialist palliative care’ providers who ‘use advanced skills and conduct research and education focussed exclusively on people with palliative care needs, often in settings dedicated to this purpose’ and the latter, ‘generalist’ palliative care which tends to describe palliative care interventions and approaches provided by healthcare workers who are not primarily trained in, or practicing in the field of palliative care, but rather it forms part of their main speciality work.2
It also asks questions about who the providers should aim to reach with their services. Traditionally palliative care has been thought of as looking after people with life limiting illnesses, often towards the end of their lives. More recently studies and groups advocate both earlier intervention or expansion to new groups of people, with significant symptoms and suffering, but without a clinical condition usually thought of as directly life-limiting. Do specialist palliative care healthcare workers end up caring for people with needs outside their immediate area of expertise? Or does a restriction mean that people are unfairly denied access to at least a certain level of symptom control? This is particularly acute where allied clinical services, for example chronic pain services, do not exist.
Finally, we have questions surrounding the transition of the ethical values in palliative care from one place to another as services are set up. Palliative care advocates in the global north often refer to a special ‘ethos’ that underpins services, particularly the modern hospice. It is often argued that it is from this that a significant portion of the clinical benefits of the palliative care approach are derived. I have certainly seen the benefits myself when I worked in Meadow House Hospice in West London.
However, there is a very important and, I would argue, neglected aspect to this. Included within this ethos are often multiple normative claims of how things ought to be. For example, the view that someone should, if they wish, know they are dying. The arguments for this approach are commonly based on the important role of individual autonomy in western healthcare. Service models and clinical guidelines are built around this principle, which in turn become training manuals and text books. What interests me is how should ethical aspects be thought of when services are created in settings, for example, where other values maybe more prominent. For example, somewhere a familial or even community decision-making model might be much more common. Or perhaps where it is described that it is highly culturally inappropriate to tell a person that they might be dying. How much orthodox palliative care can you do without the patient being aware of at least some of the severity of their illness? How much damage will you do if you try to enforce a western style of openness about the prognosis?
A lot of the literature examines ethical challenges in palliative care from the theoretical level and describes the implications these theories have for bedside practice. Very little research has looked at what the landscape looks like at the bedside and what that might mean for the usefulness of the various theoretical perspectives for guiding day-to-day clinical practice. Work in Mexico3 and the Netherlands4 has looked at this and the range of these day-to-day challenges and has shown that the lists of topics significantly exceeds the topics discussed in the academic literature at the theoretical level. My pilot work in Uganda has shown the same result, and so now I’m undertaking this PhD to help describe the landscape in Kampala and provide the first Kampala-based empirical data of this type to the IHPCA clinicians and educators for them to use in designing training modules and services.
There are no real answers in this piece, only questions and hopes for future answers, which is probably right for someone at the beginning of their PhD. There is one certainty though. The global inequity in access to opiate-based pain relief, and the suffering it causes, needs to end.
- Knaul, F. M. et al. Alleviating the access abyss in palliative care and pain relief—an imperative of universal health coverage: the Lancet Commission report. The Lancet (2017). doi:10.1016/S0140-6736(17)32513-8
- Zaman, S., Inbadas, H., Whitelaw, A. & Clark, D. Common or multiple futures for end of life care around the world? Ideas from the ‘waiting room of history’. Soc. Sci. Med. 172, 72–79 (2017).
- Guevara-López, U., Altamirano-Bustamante, M. M. & Viesca-Treviño, C. New frontiers in the future of palliative care: real-world bioethical dilemmas and axiology of clinical practice. BMC Med. Ethics 16, (2015).
- Hermsen, M. A. & ten Have, H. A. Moral problems in palliative care practice: a qualitative study. Med. Health Care Philos. 6, 263–272 (2003).