‘Nothing in the World Can Serve Those People Like Palliative Care': Results from a Qualitative Study on Palliative Care for Refugees in Jordan and Rwanda

For each case study, in-depth, semi-structured interviews exploring experiences, needs, challenges, and possibilities for palliative care were conducted with refugees dealing with life-limiting or terminal illnesses in camp and urban settings in Jordan and in Rwanda. Special ethics consideration was incorporated into the research methods, remaining sensitive to refugees' compounded vulnerabilities of illness, displacement, and exposure to conflict. Along with interviews with refugees, local and international humanitarian healthcare providers were interviewed at both sites to explore moral experiences, barriers and facilitators for the provision of palliative care. Interviews with local palliative care recipients were additionally conducted in Jordan as per local authorities' requests. Interview transcripts were analyzed using a modified grounded theory approach using Nvivo 11.0. Themes that emerge from analysis include: minimum expectations on the part of refugees, ethical imperatives of providing palliative care; moral distress when it cannot be provided; barriers to accessing essential medications for symptom relief; crucial importance of culturally relevant care and psychosocial support; the lack of international and local palliative care guidelines, training, and support for the specific socio-economic context of refugeedom. The alleviation of suffering is central to the work of humanitarian healthcare, which includes those in need of palliative care. Our study clarifies ethical and practical dimensions of including palliative care in humanitarian crisis contexts.