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

Lisa Schwartz; Elysée Nouvet; Sonya de Laat; Rachel Yantzi; Olive Wahoush; Wejdan A Khater; Emmanuel Musoni Rwililiza; Ibraheem Abu-Siam; Gautham Krishnaraj; Takhliq Amir; Kevin Bezanson; Corinne Schuster Wallace; Oumou Bah Sow; Alpha Ahmadou Diallo; Fatoumata Binta Diallo; Laurie Elit; Carrie Bernard; Matthew Hunt

doi:10.1371/journal.pgph.0001306

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

PLOS Glob Public Health. 2023 Feb 1;3(2):e0001306. doi: 10.1371/journal.pgph.0001306. eCollection 2023.

Authors

Lisa Schwartz¹, Elysée Nouvet², Sonya de Laat³, Rachel Yantzi¹, Olive Wahoush⁴, Wejdan A Khater⁵, Emmanuel Musoni Rwililiza^{6

7}, Ibraheem Abu-Siam⁸, Gautham Krishnaraj⁹, Takhliq Amir¹⁰, Kevin Bezanson¹¹, Corinne Schuster Wallace¹², Oumou Bah Sow^{13

14}, Alpha Ahmadou Diallo^{13

14}, Fatoumata Binta Diallo¹⁵, Laurie Elit¹⁶, Carrie Bernard^{17

18}, Matthew Hunt¹⁹

Affiliations

¹ Health Research, Evidence, and Impact (HEI), McMaster University, Hamilton, Ontario, Canada.
² School of Health Studies, Western University, London, Ontario, Canada.
³ Global Health, McMaster University, Hamilton, Ontario, Canada.
⁴ School of Nursing, McMaster University, Hamilton, Ontario, Canada.
⁵ Adult Health Nursing Department, Faculty of Nursing, Jordan University of Science and Technology, Ar Ramtha, Jordan.
⁶ University Teaching Hospital of Kigali (CHUK), Kigali, Rwanda.
⁷ Aarhus University, Aarhus C, Denmark.
⁸ Migration Studies, Granada University, Granada, Spain.
⁹ School of Medicine, Queen's University, Kingston, Ontario, Canada.
¹⁰ Dalhousie University, Halifax, Nova Scotia, Canada.
¹¹ Northern Ontario School of Medicine, Thunder Bay, Ontario, Canada.
¹² Department of Geography and Planning, University of Saskatchewan, Saskatoon, Saskatchewan.
¹³ Ministère de la santé, Conakry, Guinée.
¹⁴ Université de Conakry, Conakry, Guinée.
¹⁵ Pédiatrie CHU Donka, Université Gamal Abdel Nasser Conakry, Conakry, Guinée.
¹⁶ Obstetrics and Gynecology, McMaster University, Hamilton, Ontario, Canada.
¹⁷ Department of Family and Community Medicine, University of Toronto, Toronto, Ontario, Canada.
¹⁸ Department of Family Medicine, McMaster University, Hamilton, Ontario, Canada.
¹⁹ School of Physical and Occupational Therapy, McGill University, Montreal, Canada.

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.

Copyright: © 2023 Schwartz et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Grants and funding

This research project is funded by ELRHA’s Research for Humanitarian Crisis (R2HC project #19775 to LS, MH) Programme, which aims to improve health outcomes by strengthening the evidence base for public health interventions in humanitarian crises. R2HC is funded by the UK Foreign, Commonwealth and Development Office (FCOD), Wellcome, and the UK National Institute for Health Research (NIHR).