Community-based palliative care in refugee camps: Rwandan snapshots
31 October 2022
Posted by: Sonya de Laat
An often-overlooked consideration in the support and care for refugees is the relief from pain and suffering associated with life-limiting or terminal illness. Yet there is a tragic reality - one that only grows as the number of displaced people surpasses the appalling milestone of 100 million reached in May 2022 - that some refugees residing in camps will face life-threatening conditions and even die far removed from people and places of comfort.
During my time as the Caroline Miles Visiting Scholar at Ethox, I had the opportunity to explore further ethical and practical dimensions of palliative care for refugees residing in camps. In particular, I explored questions including: If palliative care is the relief of suffering, to what degree can that be achieved in the austere environment of refugee camps? To that end, what are the experiences and needs of patients and care providers? When international humanitarian aid organizations rely on community palliative care workers in crisis contexts, are they empowering or imposing on members of affected communities? What are the moral and practical dimensions of relying on local community members who - though generously offering their time and abilities - may themselves be traumatized by their situation?
In research conducted by the Humanitarian Health Ethics research group, we heard from patients, family members and healthcare providers about their palliative needs, experiences and the limits/opportunities presented in two refugee camps in Rwanda.
Palliative care is defined as “an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness or serious health-related suffering” (WHO) and “a component of comprehensive care throughout the life course” (WHA). According to the World Health Organization, “each year, an estimated 40 million people are in need of palliative care [with] 78% of them people liv[ing] in low- and middle-income countries. Worldwide, only about 14% of people who need palliative care currently receive it.”
The individuals we heard from included individuals living with various forms and stages of cancers, physical injuries, and heart disease. They recounted their diagnosis narrative and explained the often labyrinthine and splintered access to treatment. Important to learn was that while refugees were given access to the same care offered to local nationals, refugees had to navigate several levels of bureaucracy to obtain clinic authorizations or to receive fee-free care. The result, in several cases, was an exacerbation in symptoms or disease progression, requiring greater palliative attention. Despite clear need for palliative care, it was not officially offered in the camps in terms of being a budget-line item. Rather, it was being provided ad hoc by dedicated healthcare professionals who considered it their moral duty to reduce human suffering. Often this meant providing pain relief along with mental and spiritual support to patients and their families, from the point of diagnosis through to bereavement should it come to that point. The ability to provide this care, however, was limited to available pharmaceutical and human resources, neither of which was in abundance nor necessarily consistent.
© Photography courtesy of the Good Samaritans. Editing by S. de LaatRefugees residing in one camp included in the Aid When There is ‘Nothing Left to Offer study, developed a grassroots approach to providing palliative support. Calling themselves The Good Samaritans, this group of volunteers visit patients in hospital or their residence providing direct accompaniment, respite to family members, and basic support to healthcare providers. Most importantly, they do this for people who have arrived at the camp unaccompanied. As a low cost, low skill service, it has been proving itself to have high impact on general wellbeing of patient, family and healthcare providers. The opportunities inherent in this initiative cannot be ignored, but neither can the ethical aspects of its inclusion in refugee healthcare. A more sustained and comprehensive look at the ethical and practical dimensions of enlisting the assistance of refugees, who are themselves potentially ‘wounded healers’, is still underexplored within humanitarian emergency contexts.
The images presented in this blog were provided by The Good Samaritans and were among a couple of series of snapshots that formed the basis of a parallel discussion on the ethics of visual representations of people in positions of possible heightened vulnerability or suffering.
While much work is yet to be done in terms of global and national systemic changes related to opioid access and palliative care education, and in terms of understanding the needs and opportunities related to enlisting the skills of refugees in the provision of palliative support, this visiting scholar opportunity was well designed in term of creating a welcoming space, physically and intellectually, in which to explore these ‘work-in-progress’ questions. Thank you to the Ethox team for making it possible despite all the pandemic mayhem.