https://orcid.org/0000-0002-8203-3249
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ABSTRACT
After often gruelling journeys, some refugees arrive at secure locations with severe injury or illness. Others find themselves shortly thereafter facing a life-limiting health condition. Palliative care has been the focus of recent research, and of academic and aid sector dialogue. In this study, we ask: What are experiences and needs of patients and care providers? What opportunities and obstacles exist to enhance or introduce means of reducing suffering for patients facing serious illness and injury in crisis settings? We present findings of a qualitative sub-study within a larger programme of research exploring moral and practical dimensions of palliative care in humanitarian crisis contexts. This paper presents vignettes about palliative care from refugees and care providers in two refugee camps in Rwanda, and is among the first to provide empirical evidence on first-hand experiences of individuals who have fled protracted conflict and face dying far from home. Along with narratives of their experiences, participants provided a range of recommendations from small (micro) interventions that are low cost, but high impact, through to larger (macro) changes at the systems and societal levels of benefit to policy developers and decision-makers.
Acknowledgments
We are deeply indebted to the participation of refugees and their families who shared their stories.
Disclosure statement
No potential conflict of interest was reported by the author(s).
Notes
1. Pallchase is a global network committed to support the integration of palliative care into humanitarian practice. https://www.pallchase.org
Additional information
Funding
Notes on contributors
Sonya de Laat
Sonya de Laat is a scholar of histories of humanitarian visual culture and the moral dimensions of humanitarian healthcare with degrees in Anthropology and Media Studies. She was the Postdoctoral Fellow in Humanitarian Health Ethics, Department of Health Research Methods, Evidence and Impact (HEI), McMaster University at the time of this research. She is Research Associate with HEI, an instructor in the Bachelor of Health Sciences program at McMaster University, an investigator with the Humanitarian Health Ethics research group and active member of the Canadian Network on Humanitarian History. Her current work focuses on visual narratives of palliative care in humanitarian contexts and artifice of global health images before and in the era of generative AI. She also has a creative photography-based practice that can be found at www.sonyadelaat.com
Emmanuel R. Musoni
Emmanuel R. Musoni-Rwililiza is a distinguished psychiatrist with a global reputation for his expertise in various psychiatric disciplines, encompassing treatment for both inpatients and outpatients, migrants and refugees, as well as palliative care and community mental health. Dr. Musoni’s extensive experience is marked by several influential roles, notably as the Chief Medical Officer at UNAMID-SORTONI Camp in Darfur, WHO-mental health expert for migration in Sudan, WHO-Child and adolescent mental health consultant for the African region, the Clinical Director at Masaka District Hospital in Rwanda, head of the department of mental health at the university teaching hospital of Kigali. A Ph.D. candidate in the Department of Public Health at Aarhus University in Denmark with a due date for defense on 19 April 2024, is also a consultant for the African Centre for Research on End of Life Care and Solidminds counseling services in Rwanda. He lectures at the University of Rwanda’s Department of Psychiatry and he is Deputy Clinical Chief in Liaison Psychiatry at the Hospital of Sion, affiliated with the Hospital of Valais in Switzerland. His skill in research and analysis has been instrumental in developing innovative programs that aim to improve healthcare systems, ultimately providing better services to the community.
Kevin Bezanson
Kevin Bezanson is a Palliative and Supportive Care Physician at the Thunder Bay Regional Health Sciences Centre in Thunder Bay, Ontario, Canada and an Assistant Professor at the NOSM University, Thunder Bay. He completed a Diploma in Tropical Medicine & Hygiene, University of Liverpool, in 2006, and Masters in Public Health, University of Toronto, 2013. He has clinical, educational, and research interests in access to palliative care for underserved populations, currently including Homeless and Indigenous communities in Thunder Bay and Northwestern Ontario. He has worked in Malawi as a clinical program manager and research fellow focused on operational research in the areas of palliative care and HIV/AIDS in collaboration with Dignitas International, Malawi Ministry of Health, and the Palliative Care Association of Malawi. He has also worked with the Global Health Program of the Department of Family & Community Medicine, University of Toronto. Since 2015 he has contributed from his experience to the Humanitarian Health Ethics research group, helping contextualize palliative care standards and care delivery in resource-limited settings to research in humanitarian healthcare.
Rachel Yantzi
Rachel Yantzi is a pediatric critical care nurse and PhD candidate in Health Research Methodology at McMaster University. She holds a master’s degree in community health nursing and public health from the University of Illinois at Chicago, and a bachelor’s degree in nursing from Goshen College. Rachel has completed two assignments with Médecins/Sans Frontières/Doctors Without Borders in the Central African Republic and Cox’s Bazar, Bangladesh. She is a member of the humanitarian health ethics research group and PallCHASE (Palliative Care in Humanitarian Aid Situations and Emergencies). Rachel’s research interests include patient and family experiences of healthcare and research participation, integration of palliative care in humanitarian response, qualitative health research methodologies, humanitarian healthcare workers’ moral experience , and critical approaches to humanitarian health ethics.
Olive Wahoush
Olive Wahoush is an Associate Professor in the School of Nursing at McMaster University, Hamilton, Canada. Drawing upon leadership experiences across diverse global contexts including the UK, Canada, the Middle East, and Asia, Olive has cultivated expertise in enhancing healthcare practices and service delivery. Beginning within hospital settings, Olive’s trajectory expanded into education, where she tailored curricula to suit local needs while emphasizing quality outcomes. Her influence extends from Saudi Arabia to Canada, with a particular focus on the elevation of nursing and clinical standards. Upon completing her doctoral degree, she shifted focus towards evaluation methodologies, recognizing its significance in sustaining improvements. He professional ambitions intertwine academia and consultancy, with a focus on researching vulnerable populations, migration dynamics, and its impact on child and family health. A seasoned practitioner in program development and implementation, Olive seeks to leverage consultancy roles to refine healthcare initiatives and assess their efficacy. Her expertise encompasses not only systemic intricacies but also extends to nurturing human resources, particularly within the realms of child health, nursing, and nursing education.
Elysée Nouvet
Elysée Nouvet is Associate Professor in the School of Health Studies at Western University, London, Canada. She is a medical anthropologist with over 20 years of experience conducting research and facilitating conversations about global, national, and community responses to perceived inequalities and suffering. Since the Ebola outbreak in West Africa, much of her work has focused on the politics and ethics of collaboration in global health. Elysée is part of the ethics advisory committee of the Coalition for Equitable Research in Low-Income Settings (CERCLE), has published over 100 peer reviewed articles, and if a proud mother to two adolescents.
Matthew Hunt
Matthew Hunt is Professor in the School of Physical and Occupational Therapy at McGill University, Montreal, Canada. He is a researcher at the Centre for Research on Ethics and the Centre for Interdisciplinary Research in Rehabilitation and conducts research at the intersections of ethics, rehabilitation, and global health. He leads the ethics axis of the Quebec Population Health Research Network, and co-leads the LEVIER (labolevier.com), a living laboratory on rehabilitation ethics, and the Humanitarian Health Ethics Research Group (humanitarianhealthethics.net).
Takhliq Amir
Takhliq Amir is a cardiac surgery resident at Dalhousie University, Halifax, Canada. At the time of this publication, she was a student at the Michael G. DeGroote School of Medicine, McMaster University, Hamilton, Canada. She previously completed her bachelor’s degree in Health Sciences (Honours) with a Global Health Specialization, also at McMaster University. She is interested in working at the intersection of clinical medicine and global/public health, particularly with an emphasis on implementation research, knowledge translation and health policy. Her past experiences have conveyed the complexity of addressing the systems-level barriers faced by vulnerable populations globally, and have also demonstrated the use of policy and research to effectively translate knowledge into the implementation of initiatives in different contexts worldwide.
Carrie Bernard
Carrie Bernard is a Family Physician and an Assistant Professor in the Department of Family and Community Medicine (DFCM) at the University of Toronto and an Assistant Clinical Professor in the Department of Family Medicine at McMaster. She has practised comprehensive family medicine since 1999 in Brampton, Ontario, with the Queen Square Family Health Team. She began teaching medical students and residents in 2003 at her clinic office and at the William Osler Health System, where she is an active staff member. Passionate about community and global health, Dr. Bernard worked with Public Health Ontario from 2012 to 2019, where she provided expert advice on communicable diseases. She also worked with Médecins Sans Frontières in northern Uganda from 2004 to 2005. Her research interests focus on ethics in medical practice and she is a member of the Humanitarian Health Ethics Research Group, a multidisciplinary team of researchers and practitioners in Canada who explore ethical issues related to humanitarian health care work. In 2013 the Ontario College of Family Physicians recognized Dr. Bernard as a Regional Family Physician of the Year.
Christian Ntizimira
Christian Ntizimira is the Founder/Executive Director of the African Center for Research on End-of-Life Care (ACREOL), a non-profit organisation to bring socio-cultural equality through “Ubuntu in End-of-life Care” in Africa. He is a Fulbright Alumni and graduated from Harvard Medical School, Department of Global Health and Social Medicine, and former City Manager, Kigali, City Cancer Challenge Foundation, and Executive Director of the Rwanda Palliative Care and Hospice Organization (RPCHO), a non-profit organisation focused on home-based care in Kigali City. He pioneered the integration of palliative care and end-of-life care into health services rendered to Rwandan cancer patients and in the community settings. Through his program (2008-2013), more than 1500 health care providers and community health workers have learned the principles of cancer prevention control & palliative care leading to a five-fold increase in the prescription of morphine, an essential pain medication. In 2016 he was awarded as a young cancer leader and world cancer Regional lead in 2018 for his outstanding contributions in cancer control in Rwanda and Africa.
Lisa Schwartz
Lisa Schwartz is the Arnold L. Johnson Chair in Health Care Ethics, Professor in the department of Health Research Methods, Evidence & Impact, and associate member of the Department of Philosophy McMaster University, Hamilton. Prof Schwartz completed her PhD in Philosophy at the University of Glasgow, where she then held the position of Senior Lecturer in Philosophy of Medicine in the Department of General Practice, Faculty of Medicine. She and is a member of the Ethics Review Board of Médecins Sans Frontières since 2014. She has collaborated with the International Committee of the Red Cross project on Health Care in Danger, was a member of the World Health Organization’s Public Health Ethics Consultative Group and Co-Chaired the authorship of the Guidance for Managing Ethical Issues in Infectious Disease Outbreaks, and contributed to the authorship of Integrating palliative care and symptom relief into responses to humanitarian emergencies and crises: a WHO guide.