Moral experiences of humanitarian health professionals caring for patients who are dying or likely to die in a humanitarian crisis

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.

Conceptualizing Ethical Issues of Humanitarian Work: Results From a Critical Literature Review

“…Some authors discuss ethical issues arising within humanitarian work contexts so as to classify them in types (6,11,15,28,31,35,37,48,51,53). This classifying accounts for about 16% of all the documents analyzed.…”

“…We found two main types of typologies or categorizations in the documents: original typologies and categorizations based on previous typologies. Notable typologies identified include those of Bell (52), Hunt (15,35,37,66), Schwartz (47) and Slim (11). Bell (52) proposes four (n=4) categories of dilemmas faced by humanitarian workers and Hunt (37) suggests a six-point categorization of ethical issues related to the use of information technologies in humanitarian medical care.…”

“…Indeed, a significant number of authors note that humanitarian work carries its share of risks for workers, particularly because of the context in which they must operate (8,12,13). In fact, humanitarian actors often have to work under considerable pressure in contexts where resources are limited and needs are high (14)(15)(16).…”

Palliative Care in Humanitarian Crises

“…Bereavement care to manage raw grief in dying and death is seldom provided. The limits of resources are major impediments to palliative care options (Hunt et al, 2018;Schneider et al, 2018).…”

A case analysis of partnered research on palliative care for refugees in Jordan and Rwanda

“…How can existing standards be adapted to support delivery of ethically and contextually appropriate palliative care in humanitarian action [ 11 ]? The study questions and objectives were developed in dialogue with representatives from international aid agencies, local non-governmental aid organizations, and individual healthcare providers and policy makers associated with palliative care in crisis settings and with refugee healthcare through the following concurrent mixed methods: (a) a critical interpretive synthesis literature review of palliative care needs, interventions and challenges in humanitarian crisis settings [ 28 ], (b) a survey of whether humanitarian organizations provide palliative care and the extent they enable their staff to provide it [ 29 ], (c) in-depth interviews that enabled exploration of international HCPs moral experiences in situations of extreme suffering [ 30 ], and (d) a thematic analysis of the interviews and survey leading to a summary of obstacles to the provision of palliative care in humanitarian crisis contexts [ 31 ].…”