Ethics & palliative care during international humanitarian action

Purpose

This qualitative study aimed to investigate provision of palliative care within humanitarian response, including the ethical dimensions for health care providers and experiences of affected individuals and care-givers. The study explores four case studies based on different types of humanitarian settings, and includes a literature review, an organisation-based survey, and key informant interviews.

Outcomes

The study successfully completed a literature review, an organisation-based survey and qualitative interviews with humanitarian policy-makers, healthcare providers (local and international), individuals living with palliative care needs, and their caregivers. Case studies were developed from the emergency response for displaced Syrian refugees in Jordan, a protracted refugee setting in Rwanda, the 2014-15 Ebola outbreak in Guinea, as well as from global emergency response to natural disasters.

Key findings

• The literature review highlighted a lack of evidence on palliative care provision in emergency contexts, itself a reflection that this is often an overlooked aspect of humanitarian response.
• The moral experience of humanitarian responders was grounded in values of compassion in the provision of care, and justice in accessing it. Themes included easing suffering, upholding dignity, prioritisation, systemic constraints, and the weight of responsibility.
• Obstacles were identified to implementation of palliative care by humanitarian organisations.
  Patient and healthcare provider participants overwhelmingly spoke of the crucial importance of low-cost, low-specialty care such as accompaniment.
• There always remains ‘something to offer’ in terms of palliative care in international humanitarian action, however such interventions should in no way diminish attempts to offer curative care where/when possible, working towards improvements of local and global health systems, and advocating for equity, justice and rights to health and healthcare.

Outputs

• Findings have been integrated into WHO guidance: Integrating palliative care and symptom relief into responses to humanitarian emergencies and crises
• The study team reviewed and contributed to the 2018 Sphere Guidelines
• Three peer-reviewed articles published: a comment piece, literature review and an article on the moral experiences faced by health care providers in emergency contexts
• A master’s thesis focused on humanitarian policy-makers’ perspectives on palliative care
• Findings have been included in a forthcoming Handbook for Palliative Care in Humanitarian Action
• At least four further peer-reviewed articles are expected to be published (case studies, on the overall study and specific emerging themes).

Next steps

Further research is under development with collaborating organisations to explore effective models of palliative care in humanitarian action.