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.

Highlights

  • Humanitarian healthcare aims to save and safeguard the lives of people caught up in situations of crisis

  • Our analysis focuses on their moral experiences, that is situations in which they experienced values they held to be important as being realized or thwarted (Hunt and Carnevale 2011) as they responded to the needs of patients who were dying or likely to die in a humanitarian crisis

  • We report on our analysis of the interviews answering the following question: “What are the moral experiences of humanitarian health professionals as they respond to the needs of individuals who are dying or likely to die during a humanitarian crisis?” This analysis is guided by the following understanding of moral experience: “Moral experience encompasses a person’s sense that values that he or she deems important are being realized or thwarted in everyday life

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Summary

Introduction

Humanitarian healthcare aims to save and safeguard the lives of people caught up in situations of crisis. This is enacted in diverse settings: international non-governmental organizations (NGOs) implement vaccination and feeding programs, set up treatment centers during outbreaks of infectious diseases such as cholera and Ebola, provide primary care in refugee camps, and establish field hospitals to deliver surgical care during wars and following natural disasters, amongst many other actions. Despite the best intentions and dedicated care of humanitarians, many patients will die due to injury or incurable disease. This is an inescapable reality, especially given the precarity and resource scarcity that characterize humanitarian crises. There has been a lack of guidance and support related to caring for dying patients during humanitarian crisis (Nouvet et al 2018), a situation which may increase uncertainty and lead to moral distress

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