No abstract

Wars, disasters, and epidemics affect millions of individuals every year. International non-governmental organizations respond to many of these crises and provide healthcare in settings ranging from a field hospital deployed after an earthquake, to a health clinic in a longstanding refugee camp, to a treatment center during an infectious disease outbreak. The primary focus of these activities is to save lives. However, inevitably, many patients cannot be saved. We undertook an interpretive description study to investigate humanitarian policy-maker and care providers' experiences and perceptions of palliative care during humanitarian crises. In this paper, we report on interviews with 23 health professionals, 11 of whom also had experience as policy-makers within a humanitarian organization. We use the concept of moral experience as an analytic lens: participants' experiences of values that they held to be important being realized or thwarted as they responded to the needs of patients who were dying or likely to die. We identified five themes related to participants' moral experiences, all of which relate to values of compassion in the provision of care, and justice in accessing it. (1) Participants described intervening to ease the suffering of dying patients as an inherent aspect of humanitarianism and their duty as health professionals. (2) Participants also expressed that upholding dignity was of critical importance, stemming from a recognition of shared humanity and as an act of respect. (3) Since humanitarian action is provided in situations of scarcity, prioritization is inescapable. Acknowledging the primacy of curative care in emergencies, participants also emphasized the importance of ensuring that care for the dying was attended to, including during triage. (4) Participants reported working within and pushing against systemic constraints such as legal or logistical barriers to opioids, lack of guidelines, and conflicting views with colleagues. (5) Given the stakes involved, participants felt a heavy weight of responsibility and described their challenges in carrying it. These findings illuminate experiences responding to patients who are dying or likely to die, and how these connect with the values of humanitarian health professionals, sometimes resulting in dissonance between values and actions. They also point to the need to make more space for palliative, alongside curative, approaches to care in situations of humanitarian crises, ideally by further integrating them.

Access to palliative care, and more specifically the alleviation of avoidable physical and psychosocial suffering is increasingly recognized as a necessary component of humanitarian response. Palliative approaches to care can meet the needs of patients for whom curative treatment may not be the aim, not just at the very end of life but alleviation of suffering more broadly. In the past several years many organizations and sectoral initiatives have taken steps to develop guidance and policies to support integration of palliative care. However, it is still regarded by many as unfeasible or aspirational in crisis contexts; particularly where care for persons with life threatening conditions or injuries is logistically, legally, and ethically challenging. This article presents a synthesis of findings from five qualitative sub-studies within a research program on palliative care provision in humanitarian crises that sought to better understand the ethical and practical dimensions of humanitarian organizations integrating palliative care into emergency responses. Our multi-disciplinary, multi-national team held 98 in-depth semi-structured interviews with people with experiences in natural disasters, refugee camps in Rwanda and Jordan, and in Ebola Treatment Centers in Guinea. Participants included patients, family members, health care workers, and other staff of humanitarian agencies. We identified four themes from descriptions of the struggles and successes of applying palliative care in humanitarian settings: justification and integration of palliative care into humanitarian response, contextualizing palliative care approaches to crisis settings, the importance of being attentive to the ‘situatedness of dying’, and the need for retaining a holistic approach to care. We discuss these findings in relation to the ideals embraced in palliative care and corresponding humanitarian values, concluding that palliative care in humanitarian response is essential for responding to avoidable pain and suffering in humanitarian settings.