“Provide Them What They Need Until the Last Minute”: Experiences of Palliative Care and Palliative Care Needs in Humanitarian Crises

Abstract

Introduction:

Access to palliative care, and more specifically the alleviation of avoidable physical and psychosocial suffering is increasingly recognized as necessary in 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 also more broadly. Humanitarian organizations and sectoral initiatives have taken steps to develop guidance and policies to support integration of palliative care. However, it is still sometimes regarded as unfeasible or aspirational in crisis contexts; particularly where care for persons with life threatening conditions or injuries is logistically, legally, and ethically challenging. We present a synthesis of findings from five qualitative sub-studies within a R2HC-funded 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.

Method:

A multi-disciplinary, multi-national team conducted an exploratory mixed-methods study and presented findings from semi-structured interviews with international and local health care providers, patients, and families that explored experiences of palliative care in different humanitarian responses: protracted refugee crisis (Rwanda n=17), acute refugee crises (Jordan and Bangladesh n=20), a public health emergency (Guinea n=16), and natural disasters (various countries n =17)

Results:

Four themes emerged from descriptions of the struggles and successes of applying palliative care in humanitarian settings: 1) justification and integration of palliative care into humanitarian response, 2) contextualizing palliative care approaches to crisis settings, 3) the importance of being attentive to the ‘situatedness of dying’, and 4) the need for retaining a holistic approach to care. The findings are discussed relation to the ideals embraced in palliative care and corresponding humanitarian values.

Conclusion:

Though challenging, palliative care in humanitarian response is essential for responding to avoidable pain and suffering consistent with humanitarian principles.