If there is one thing the Ebola crisis has generated these past 18 months, it is widespread recognition that globally we could be better prepared for responding swiftly and ethically to complex pandemics. Ethical issues that surfaced in the panicked first months of the last Ebola crisis have ranged from debates on whether or not healthcare workers in non-Ebola affected countries have a duty to respond and assist their colleagues in other affected countries, to the absence of a standard of care for treatment of affected patients. As members of the Humanitarian Healthcare Ethics Group, we were surprised that another big question was not, and still is not, receiving the deliberation it merits: What are the responsibilities of humanitarian healthcare teams, if any, vis a vis the palliative needs of patients?
The overarching and explicit goal of healthcare – like humanitarianism – is to save and protect life. The World Medical Association guidelines for care of patients in the event of a disaster defines ethical triage as one that uses scarce resources for patients who can be saved. What happens, however, when a cure is not available and/or a patient cannot be saved?
Photo credit: ECECHO - Jean-Louis Mosser
As of 9 June, the case count for Ebola was at 16,585 with 6,357 deaths. The mortality rate for Ebola ranges from 30-90%, and is 70% in most contexts according to the WHO. Healthcare providers working on the front lines of Ebola did so with no evidence-based treatment, with little more to offer than supportive care. They struggled with feeling defeated and frustrated because they felt forced “to turn our treatment facilities into palliative care facilities”.
This may be as good a time as any to reconsider and re-evaluate the ethical possibilities, limits and responsibilities of humanitarian healthcare. Should humanitarian healthcare teams include some individual(s) skilled in non-curative, supportive care? Is this out of the question, and if so, on what bases?
"A division between palliative and curative approaches may also be a luxury of more resourced healthcare systems, and incongruent with the experience of life, care and death in many parts of the world."
Many patients in humanitarian settings have been subjected to insecurities and inequalities for years, if not a lifetime. Saving the lives of such individuals, especially at those times when their only chance at survival rests with humanitarian attention, should remain a dominant ethical imperative of humanitarian healthcare. Death of affected people is a failure in humanitarian terms - that is not something we want to contest. But where does that leave patients who are beyond recovery? Is there really a clear line – whether ethical, professional, or practical - between care aimed at rescue and care aimed at humane, though non-curative, support? Is this about enacting a particular promise or story of humanitarianism? For whom? Priorities are important in the midst of chaos, but is this the best we can do?
One critic suggests that the separation of care into ‘palliative’ and ‘curative’ approaches may be “clinically false and morally inhumane” (Roy 2011). A division between palliative and curative approaches may also be a luxury of more resourced healthcare systems, and incongruent with the experience of life, care and death in many parts of the world. Context, customs and communication with the patient or their family and friends can ensure supportive care that is consistent with patient beliefs and expectations.
"What happens, however, when a cure is not available and/or a patient cannot be saved?"
However, in circumstances such as widespread outbreak, family and friends may not be able to be present to provide individually sensitive end of life care. Aid workers are left to attend to the social, spiritual and physical needs of the dying, alleviating the terrible pain and loneliness of dying on an isolated ward. Why not have some explicit commitment within the field to recognising and preparing these teams for such cases?
There is certainly much that remains to be discussed and debated, not least of which might be: how do you fundraise for palliative care in a sector defined by images of repair and recovery? But treating those who need it most does not always mean cure. Providing for the palliative needs of patients is also consistent with the principles of humanitarian healthcare ethics.