This article first appeared on the blog of the European Association for Palliative Care.
Continuing our new series about palliative care in the context of humanitarian crises where we shall look at the implications of providing palliative care for migrants, refugees and people who have fled war-torn countries and places of conflict and how the hospice and palliative care community can offer appropriate support.
Today, we hear from Sphere, a global movement developing humanitarian standards to improve the quality of humanitarian assistance, and Dr Elysée Nouvet, co-author of the Sphere Handbook. The Handbook is one of the most internationally recognized sets of principles and universal minimum standards in humanitarian response. A consensus-based tool, the 2019 edition was developed thanks to the contribution of some 190 organisations, 1,400 participants in live consultations, and nearly 4,500 comments received online. The current edition recognises palliative care as a minimum standard in humanitarian healthcare for the first time in Sphere’s 20-year history.
In 2014, the Ebola epidemic was reaching its peak in West Africa. Clinicians and frontline staff across emergency treatment centres were providing healthcare to an overwhelming number of infected patients, in spite of scarce resources and a lack of guidance and know-how. Months later, those caregivers would report about the horrors they had witnessed in the centres: people dying alone and unable to see their loved ones; a sense of fear surrounding human figures in yellow protective suits; patients left without any care – or then again, caregivers dying because Ebola is so highly infectious.
The Ebola crisis struck a lot of people as a culmination of how scary end of life could be. It also shed a light on how unprepared the humanitarian healthcare sector was to provide healthcare to patients who would very likely not survive their illness. Little by little, this sector that traditionally focuses on saving lives realised the time had come for a serious discussion on the matter of supporting the dying. What does preparedness look like in the case of such acute crises? Should specific training on palliative care be provided to healthcare teams?
As this new standard makes its way into this consensus-based guide, it becomes clear that people caught in humanitarian crises do have a right to access the best possible care – even when they will not survive
A couple of years later, this kind of reflection was absorbed into the global revision consultations which led to the fourth edition of the Sphere Handbook – Humanitarian Charter and Minimum Standards in Humanitarian Response. The debate among experts and practitioners resulted in the drafting of a new minimum humanitarian standard on palliative care (Palliative care standard 2.7). People in crisis, the Handbook’s current edition quotes, should have access to palliative and end-of-life care that relieves pain and suffering; that maximises the comfort, dignity and quality of life; and that provides support for family members. The term ‘palliative care’ itself now appears 35 times across the whole handbook.
The minimum standards in the Sphere Handbook reflect what the humanitarian sector regards as the best practices available to provide high quality humanitarian assistance – one that truly puts people at the centre of decision-making. As this new standard makes its way into this consensus-based guide, it becomes clear that people caught in humanitarian crises do have a right to access the best possible care – even when they will not survive.
Up until this edition, the Sphere standards included no specific guidance on palliative care. Sphere traditionally describes healthcare in a crisis as the way to reduce excess disease and save lives. Palliative care focuses on optimising a terminally ill patient’s quality of life and on symptom management; it struggles to fit into this definition.
The community is, more strongly than ever, voicing its belief that a good death is possible, that providing care outside recovery is meaningful, and that this includes support for family members
As the outcome of a historically specific discussion, it is fair to assume the new standard and its inclusion of palliative care mirrors a broader shift in cultural medical discourse and developments in clinical expertise, one that recognises the importance of pain management and of supporting a dignified death. As end-of-life care becomes part of the minimum standards for healthcare in emergencies, the health sector gains a stronger voice to promote palliative care as part of the general discourse and make it a reason for funding in health systems in general. Many caregivers who had worked in the Ebola response – and were still morally haunted by the experience – welcome this argument.
Including a palliative care standard in the Sphere Handbook means that a ‘tunnel vision’ focus on saving lives, to the detriment of providing other essential care, is not sitting well with many in the humanitarian community. At the core of humanitarian principles is a commitment to alleviating suffering – regardless of prognosis. The community is, more strongly than ever, voicing its belief that a good death is possible, that providing care outside recovery is meaningful, and that this includes support for family members
The discussion around palliative care in humanitarian settings is likely to grow, especially now that it’s been brought to the sector’s attention and organisations are starting to take steps towards implementing the new Sphere standard. It will be important to make explicit cross references between the palliative care standard and those on mental health and non-communicable diseases. Another important question will be how to attend to spiritual needs of the dying and their loved ones. The importance of spiritual care is explicitly noted in the standard, despite continued discomfort around speaking of spirituality and religion in humanitarian assistance. A challenge will be that of access to resources and materials making dignified care possible. This includes symptom relief treatment and opioids, but also incontinence pads, catheters, and so on. The main goal will not only be to better alleviate a patient’s suffering, but also to fully ensure the person’s dignity, until the very end.
This blog post was extracted from a long interview with Dr Elysée Nouvet, palliative care expert and co-author of the Sphere Handbook.
Sphere is thankful to Dr Nouvet for significantly contributing to the content.