Aid when there is “nothing left to offer”: A study of ethics & palliative care during international humanitarian action

NEW PUBLICATION: Nouvet et al. Dying in Honor: experiences of end-of-life palliative care during the 2013-2016 Ebola outbreak in Guinea. Journal of International Humanitarian Action 2021 6(10): 1-17. Open access link

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 is 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 aim 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.

  View summary videos and updates of the study made during our partnership meeting held in Geneva, Switzerland in September 2018.

The 67th World Health Assembly (WHA) resolved on “strengthening palliative care as a component of comprehensive care throughout the life course.” The World Health Organization (WHO) calls palliative care “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening conditions, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” Palliative care is an area of growing global concern. It is increasingly recognized as necessary (WPCA 2014), yet simultaneously seen as outside the realm of possibility in many contexts; particularly in humanitarian settings where care in life threatening conditions may be logistically, legally, and ethically challenging – especially where competition for resources is fierce. 

 

SUB-STUDIES

The research project began with an international survey to assess how non-governmental organizations address palliative care. We next conducted virtual interiews with humanitarian health professionals and policy-makers regarding their perceptions of the integration of palliative care in humanitarian action. Following these initial steps, we continued with four focused sub-studies to consider palliative care in different humanitarian settings. 

Information about Case Study Site 1:

Guinea – Public Health Emergency

Information about Case Study Site 2:

Jordan – Conflict, acute refugee camp

Information about Case Study Site 3:

Rwanda – Conflict, protracted refugee camp

Information about Case Study Site 4: 

Natural Disasters Settings

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 is 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.