Aid when ‘there is nothing left to offer’: Experiences of palliative care and palliative care needs in humanitarian crises

Abstract

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.

Doing our best and doing no harm: A focused ethnography of staff moral experiences of providing palliative care at a Médecins Sans Frontières pediatric hospital in Cox’s Bazar, Bangladesh

“…It cannot be assumed that the way that staff interpreted religious virtues in Bangladesh is transferrable to humanitarian interventions in other Muslim contexts, yet these diverse interpretations have implications for how humanitarian staff make and experience palliative care related decisions. One challenge that has been identified in the literature to integrating palliative care in humanitarian contexts is the cultural and religious "situatedness of dying” [ 6 , 66 ]. At first glance, the staff at Goyalmara seemed to express vastly different values related to palliative care and the appropriateness of certain life-sustaining medical interventions for children receiving palliative care.…”

Trauma-informed palliative care for humanitarian crises

“…31 Within multidecade Rwandan refugee camps, a refugee network initiated a palliative support program for individuals who have lost loved ones. 24 Presence, nonabandonment, and advocacy are important social elements of holistic palliative care in the face of separation from one's country. 24 As community health workers use existing skills, they may preserve or reinstate self-worth by conferring supportive palliative care.…”

“…24 Presence, nonabandonment, and advocacy are important social elements of holistic palliative care in the face of separation from one's country. 24 As community health workers use existing skills, they may preserve or reinstate self-worth by conferring supportive palliative care.…”

Nurses’ Insights and Experiences in Palliative Chemotherapy Care

“…This study embarks on a phenomenological exploration, seeking to unravel the intricate perspectives and lived experiences of Jordanian nurses immersed in the daily challenges and triumphs of caring for patients receiving palliative chemotherapy within the confines of a governmental cancer care center. Jordan, like many other countries, grapples with the complexities of palliative care in cancer settings, and the experiences of healthcare professionals in this context remain a significant yet underexplored area [ 4 ]. The role of nurses, as frontline caregivers, is pivotal in shaping the quality of life for patients facing the dual challenges of cancer and palliative chemotherapy.…”