Abstract
In his memoir, “An Imperfect Offering,” Dr James Orbinski, physician and former international president of Médecins Sans Frontières (MSF) details his work during the Rwandan Genocide. Orbinksi recalls arriving at a hospital that had been inundated with injured patients in June 1994, and describes multiple patients with wounds of varying severity, survivors of sexual violence, and distressed relatives and caregivers crowding the hospital compound. He recollects the triage process, and the small but significant efforts taken to care for those for whom lifesaving interventions were not feasible: “They were covered with blankets to stay warm, and given water and whatever morphine we had.” 1
Palliative care—of which the end-of-life care described by Orbinski is one component—has always featured in humanitarian response, although it has not always been understood and described in this way. There still remains a paucity of literature on palliative care in humanitarian crises. 2 However, this noticeably changed during the 2013–2016 Ebola outbreak, originating in Guinea. The high case-fatality rate associated with Ebola, and the large number of people infected, pressed health responders to better consider the dual humanitarian commitment to alleviate suffering and save lives. The ongoing COVID-19 pandemic has also highlighted the importance of palliative care to ensure that patient dignity and comfort is maximized, particularly in resource-austere settings where access to intensive care with curative intent may be limited.
The Field Manual for Palliative Care in Humanitarian Crises draws on the experience of numerous palliative care experts, predominantly from North America, and offers practical guidance on the provision of palliative care in crisis settings. This manual establishes a typology of environmental disasters, conflict and violence, and epidemics to outline important features of such crises, along with the physical, psychological, social, and spiritual suffering people may experience. Throughout the manual, reference is made to the importance of palliative care and the need to ensure the concurrent delivery of life-saving and palliative care in health programs. The integration of palliative care across humanitarian health programs is critical, and a short chapter outlines some of the essential policy and praxis considerations required to achieve optimal integration.
Of particular significance for health care workers are the clinical chapters, which describe important elements of pain and broader symptom management. Attention is paid to complex clinical encounters, including caring for a dying patient, pharmacological and nonpharmacological considerations in the management of noncommunicable diseases in crises, palliative care emergencies, and pediatric palliative care. These chapters identify a series of quality of care, ethical, and communication considerations to optimize patient care.
The manual's final chapters expand on additional critical elements: the law, ethics, culture, and psychological and spiritual dimensions of palliative care, along with support for health care providers. Yacoub, Schwartz, and Bezanson outline relevant international legal frameworks, while emphasizing the importance of cultural sensitivity as opposed to cultural relativism. A short section on ethics details two relevant approaches: principlism and virtue ethics. While descriptions of these principles and virtues are enlightening, reference to the many obstacles that complicate moral practice, along with a summary of empirical evidence related to the moral experience of—and moral distress among—humanitarian workers, is particularly informative. The inability to save as many lives as possible where this might be possible in a well-resourced setting is presented as one example, the injustice of which can cause frustration, distress, and burnout. Other contextual and programmatic constraints may hinder the ability to provide palliative care, including a lack of training and experience, the limited availability of essential pharmacological and other treatments, and the short-term and uncertain timeframe of many humanitarian health programs.
Society and culture shape our understanding of health and our engagement with health systems, and it is reassuring to see some of the cultural dimensions of palliative care expounded further. Although the central role of staff familiar with the local social and cultural context is not emphasized, important considerations for the delivery of culturally effective care are highlighted. Recognition of the knowledge and experience of local staff is essential to ensure that the pursuit of palliative care is not positioned as the sole endeavor of international staff arriving to work in a particular context. Engagement and ongoing dialogue within multidisciplinary teams allows the expression of multiple cultural and other perspectives, which benefit attempts to deliver appropriate and effective health care. In addition to clinical and cultural dimensions, the manual outlines important and often overlooked psychological and spiritual aspects of holistic care.
The final chapter of the manual looks beyond caregiving to the caregiver, focusing on health care providers, acknowledging that the delivery of palliative care in humanitarian crises profoundly impacts those providing care. This vital chapter describes signs and symptoms of psychological illness, such as burnout and depression, and some of the well-known stressor events, including bearing witness to death and suffering, along with practices that strengthen individual and team resilience and well-being.
This manual joins a small library of accessible and actionable guidelines and handbooks that support health care workers responding to humanitarian crises. It is the first manual to provide detailed guidance related to palliative care specifically and outlines best practice approaches for the delivery of compassionate care within a challenging environment.
The manual should serve as a reference document for policymakers seeking to promote the provision of palliative care in humanitarian crises, and project managers and health care practitioners seeking to improve the quality and holistic nature of care.
People and places affected by humanitarian crises often fall foul of an overhomogenization of needs and recommendations for consequent health and other responses. As such, although this manual provides detailed—and in many cases, generalizable—guidance for those seeking to ensure the humanitarian commitment to dignity and the alleviation of suffering, complex questions related to the provision of palliative care must be approached with a recognition of the diversity of contextual challenges, individual and community perspectives, and team dynamics that shape the provision of care.