Project Overview:

In humanitarian crises such as disaster, epidemic, conflict or extreme deprivation, triage approaches tend to direct limited resources to those most likely to improve and survive (eHospice 2015). Standards of clinical care for crisis settings emphasize that patients who are dying should be treated with respect, accompanied (Institute of Medicine 2009), and provided with pain relief (WMA 2006). Where demands for care dramatically outweigh resources, however, dying patients may be left unattended, or attended by health care providers (HCPs) who do not know what to do for them, or worse, who treat patients as if they were already dead (Orbinsky 2008). 

The premise of this study was that following sudden onset disaster, epidemic, or during protracted armed conflict, humanitarian teams often operate in high mortality settings, raising crucial questions about care for the incurable and the dying, their families, and communities. 

We aimed to better understand ethical and practical experiences, challenges, and possibilities related to the integration of palliative care in the response of  humanitarian organizations in different crisis situations.

  Watch: Summary videos and study updates from our 2018 Geneva partnership meeting.

Global Health Context

Though increasingly recognized as essential, palliative care is often seen as unattainable in humanitarian contexts due to legal, ethical, and resource constraints.

The 67th World Health Assembly (WHA) has called for strengthening palliative care across the life course.

The World Health Organization (WHO) defines palliative care as an approach to improve quality of life by relieving suffering—physically, psychosocially, and spiritually.

SUB-STUDIES

The project began with:

• 🌐 An international survey of NGOs’ approaches to palliative care
• 💻 Virtual interviews with humanitarian health professionals and policy-makers

Followed by four focused case studies exploring palliative care in diverse crisis contexts:

Case Study	Context	Setting	Resources
Site 1: Guinea	Public Health Emergency	Ebola Outbreak	Case Report Journal article
Site 2: Jordan	Conflict	Acute Refugee Camp	Case Report
Site 3: Rwanda	Conflict	Protracted Refugee Camp	Case Report Research Snapshot
Site 4: Multiple Locations	Disasters Triggered by Natural Hazards	Earthquake, Flood Response

Research Outputs

• Hunt et al. (2020). ‘Addressing obstacles to the inclusion of palliative care in humanitarian health projects.’ Conflict and Health, 14(70). https://doi.org/10.1186/s13031-020-00314-9
• Nouvet, E., Sivaram, M., Bezanson, K. et al. (2018)  Palliative care in humanitarian crises: a review of the literature. Int J Humanitarian Action 3, 5 . https://doi.org/10.1186/s41018-018-0033-8
• Nouvet, E., Bezanson, K., Hunt, M. et al. (2021) Dying in honour: experiences of end-of-life palliative care during the 2013–2016 Ebola outbreak in Guinea. Int J Humanitarian Action 6, 10. https://doi.org/10.1186/s41018-021-00099-3
• Nouvet, Elysée ; Hunt, Matthew ; Krishnaraj, Gautham ; Schuster-Wallace, Corinne ; Bernard, Carrie ; Elit, Laurie ; DeLaat, Sonya & Schwartz, Lisa (2021). Unpacking the “Oughtness” of Palliative Care in Humanitarian Crises: Moral Logics and What Is at Stake? In Daniel Messelken & David Winkler, Health Care in Contexts of Risk, Uncertainty, and Hybridity. Cham: Springer. pp. 179-200. https://doi.org/10.1007/978-3-030-80443-5_12
• Schuster-Wallace CJ, Nouvet E, Rigby I, Krishnaraj G, de Laat S, Schwartz L, Hunt M. Culturally sensitive palliative care in humanitarian action: Lessons from a critical interpretive synthesis of culture in palliative care literature. Palliat Support Care. 2022 Aug;20(4):582-592. doi: 10.1017/S1478951521000894. PMID: 34183091.
• Schwartz L, Nouvet E, de Laat S, Yantzi R, Wahoush O, et al. (2023) Aid when ‘there is nothing left to offer’: Experiences of palliative care and palliative care needs in humanitarian crises. PLOS Global Public Health 3(2): e0001306. https://doi.org/10.1371/journal.pgph.0001306

Research Team:

Schwartz, Lisa, Matthew Hunt (co-PIs); Takhliq Amir, Oumou Younoussa Bah-Sow, Carrie Bernard, Kevin Bezanson, Sonya de Laat, Alpha Diallo, Pathé Diallo, Laurie Elit, Leigh-Anne Gillespie, Wedjan Khater, Gautham Krishnaraj, Sekou Kouyate, Emmanuel Musoni-Rwililiza, Elysée Nouvet, John Pringle, Lynda Redwood-Campbell, and Ross Upshur, Olive Wahoush.  

This research project was funded by Elrha’s Research for Health in Humanitarian Crises (R2HC) Programme. The R2HC programme aims to improve health outcomes by strengthening the evidence base for public health interventions in humanitarian crises. The R2HC programme is funded equally by the Wellcome Trust and DFID, with Elrha overseeing the programme’s execution and management.

Visit http://www.elrha.org/work/r2hc for more information about their funding programmes.