Aid when there is ‘nothing left to offer’

Continuing our new series about palliative care in the context of humanitarian crisis. We look at the implications of providing palliative care and bereavement care for migrants, refugees and people who have fled war-torn countries and places of conflict and how the hospice and palliative care community can offer appropriate support.

Today, we hear from Dr Lisa Schwartz, Dr Matthew Hunt, Dr Elysée Nouvet and Ani Chénier, members of the Humanitarian Healthcare Ethics Research Group, Canada. 

Some members of the Humanitarian Health Ethics Research Group palliative care project: Back row (standing), left to right: Matthew Hunt, Lisa Schwartz, Laurie Elit, Elysée Nouvet, Sonya de Laat. Front row (seated), left to right: Kevin Bezanson, Leigh-Anne Gillespie, Carrie Bernard, John Pringle

Is palliative care possible in a humanitarian emergency? This question is one that the Humanitarian Healthcare Ethics Research Group (HHERG) – a group of researchers and humanitarian practitioners – has been pondering for several years. The possibility of providing palliative care – and associated social, ethical and logistical challenges – was especially brought to the fore by the 2013-16 Ebola epidemic. Even though palliative and supportive care comprised the main treatments available in the face of a disease with high mortality rates, and for which there were no effective life-saving interventions, they were not incorporated into formal care plans.

In the fall of 2016, we launched an ELRHA/R2HC (Enhancing Learning and Research for Humanitarian Assistance/Research for Health in Humanitarian Crises)-funded project to better understand how humanitarian organisations can support the delivery of ethically and contextually appropriate palliative care in humanitarian crises.

Our aims are to document the current situation, and to analyse stakeholders’ perceptions of what is and should be happening, and the ethical principles that inform those perceptions. We are completing a literature review and interviews with stakeholders (people working with international organisations and those involved at local levels, either as healthcare practitioners or members of affected communities). In February 2017, we also launched the first survey (in French, Arabic, and English, accessible here), aimed at clarifying the challenges and needs related to palliative care provision in humanitarian settings.

While our project is still in its early phase, one note already rings clear: how keenly the people with whom we have spoken see and feel a need for these questions to be explored, and for this kind of research to be conducted. The enthusiasm with which collaborators and respondents have come forth is striking.

The project summary

Representatives from the WHO (World Health Organization), MSF (Médecins Sans Frontières), the ICRC (The International Committee of the Red Cross), the IFRC (International Federation of Red Cross and Red Crescent Societies), and Sphere worked with us to develop our research questions and objectives.

Representatives from the Palliative Care in Humanitarian Aid Situations and Emergencies (PALCHASE) and the WHO Eastern Mediterranean Regional Office helped us develop a survey currently being distributed to practitioners and policymakers. Interviews are also being conducted with practitioners and policymakers working with humanitarian organisations. have shared stories about people’s deaths, good and bad, and about the people who tried to make those deaths better. These stories are powerful and important. They are also, often, raw: interviewees revisit a story more than once, eager to clarify a point, to add details, to raise questions. These are not stories that have been told enough times to become polished or stories that fit a clear template.

Many of the people who have generously shared their time and experiences have also thanked us for creating a space to think and talk about these questions. The ethical issues surrounding the provision of palliative care in humanitarian settings are an ongoing concern for the people with whom we have spoken. Our one challenge is in locating voices of dissent, or at least people taking critical views about the validity of palliative care in humanitarian response.

One other thing is becoming clear: the way palliative care is perceived and practised in humanitarian settings is changing. Collaborators and participants with long careers in the field have told us how their own sense of the need for such care, or their colleagues’ receptivity to these ideas, has evolved. Ten years ago, a special series exploring palliative care in contexts of humanitarian crisis might have seemed inconsistent with the goals of aid; now, it seems timely.

Have you worked in the field of humanitarian healthcare in the last two years? If you have, please complete our survey . . .

Please take 15 minutes to add your voice to a global discussion on current practices and needs related to non-curative health care in humanitarian emergencies.

Links and resources

• EAPC Task Force for Refugees and Migrants.
• PALCHASE (Palliative Care in Humanitarian Aid Situations and Emergencies). For information please email Joan Marston.
• PALCHASE Facebook page.
• Palliative care in humanitarian crises: Always something to offer. The Lancet Online, 15 April 2017.
• And please don’t forget to complete the survey if you’ve worked in humanitarian health care in the last two years.

Follow the EAPC Blog for more stories in this series.

More about the authors . . .
Dr Lisa Schwartz is the Arnold L. Johnson Chair in Health Care Ethics with the Faculty of Health Sciences and an Associate Professor in the Department of Clinical Epidemiology and Biostatistics, Associate Director of the Centre for Health Economics and Policy Analysis (CHEPA), and Associate Member of the Department of Philosophy, at McMaster University.
Dr Matthew Hunt is an Associate Professor and the Director of Research in the School of Physical and Occupational Therapy at McGill University, as well as a researcher at the Center for Interdisciplinary Research in Rehabilitation and an affiliate member of the McGill Biomedical Ethics Unit and Institute for Health and Social Policy.
Dr Elysée Nouvet is an Assistant Professor in the Department of Clinical Epidemiology and Biostatistics and a Domain Planner (Ethics and Moral Reasoning) with the Michael G. DeGroote School of Medicine, at McMaster University.
Ani Chénier is a research coordinator with the Humanitarian Healthcare Ethics Research Group at McMaster University.