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MAKING SPACE FOR PALLIATIVE CARE IN HUMANITARIAN ACTION: REFLECTIONS ON OBSTACLES TO THE INTEGRATION OF PALLIATIVE CARE APPROACHES IN HUMANITARIAN HEALTHCARE
by Matthew Hunt, Carrie Bernard and Kevin Bezanson
This research project is funded by Elrha’s Research for Health in Humanitarian Crises (R2HC) Programme.
From September 17-19, Kevin Bezanson represented the Humanitarian Health Ethics research group at the 5th International Public Health and Palliative Care Conference held in Ottawa, ON.
Here is the PDF version of the poster entitled –
Health professionals’ lived experiences of palliative care provision in humanitarian crisis: Moral experiences confronting the suffering of patients who are dying or likely to die in settings of war, disaster, or epidemic.
The poster is based on ongoing research for a R2HC funded project entitled:
The research project is funded by Elrha’s Research for Health in Humanitarian Crises (R2HC) Programme. The Research for Health in Humanitarian Crises (R2HC) programme aims to improve health outcomes by strengthening the evidence base for public health interventions in humanitarian crises. Visit www.elrha.org/work/r2hc for more information. The R2HC programme is funded equally by the Wellcome Trust and DFID, with Elrha overseeing the programme’s execution and management.
Refugees and many migrants suffer from limits on their abilities to move around the world, even in pressing or urgent circumstances. They are often forced to leave their homes for reasons beyond their control, including war and civil unrest, political and religious persecution, economics, or famine and other natural or man-made disasters. Once displaced, whether internally or externally, they face pressing needs for food, water, shelter, and health care. Local governments, international agencies and non-governmental organizations often struggle with providing for their needs, particularly in resource-poor regions of the world. Recent socio-political changes in the United States, Western Europe and elsewhere have placed additional restrictions on the rights of migrants and refugees.
In solidarity with these refugees and migrants, we are hosting a no-travel virtual conference to explore the ethical, legal, philosophical, and social issues associated with refugee and migrant health in a world of economic, geopolitical, and psychological borders.
Location: Online (no travel)
For registration and other information: http://www.resistingborders.com
- To improve research, population health and health care for migrants and other discriminated-against populations
- To bring together policy, social science, clinical, social service and public health perspectives and share and transfer learning within and across countries.
- To examine contemporary problems across the globe and debate suggested solutions
- To Consider health effects of social, environmental and demographic change associated with population migration, and the effects on diseases and their causes
- To find ways to overcome differences in concepts and terminology so the field can be understood internationally in acceptable language.
- To provide opportunities for people to showcase their work and to meet to share experience and motivations
- To build networks that will last beyond the Congress itself
One year into this project, we are finalizing data collection, moving forward with analysis, and have begun dissemination activities. Progress includes:
- We have conducted interviews with 108 stakeholders, over 90% of these being with stakeholders in the three countries most severely affected by the epidemic: Guinea, Liberia, and Sierra Leone.
- Stakeholders include:
- Research participants, people who opted not to participate in research projects for which they were solicited, and proxy-decision makers who made treatment decisions for relations too ill to provide consent
- Research Ethics Board members who evaluated proposed research projects, either for national-level boards serving affected countries or for organization-specific boards operating within international organizations that assisted with the response
- Investigators who led or supported research projects conducted during the outbreak, as well as healthcare providers who worked on the frontlines of the epidemic, administering experimental interventions and monitoring patients’ condition
- Public sector representatives who were called on to oversee or regulate research conducted during the epidemic: decision-makers in health and other ministries involved in planning the response to the epidemic; representatives of Ebola survivors’ associations and other civil society groups; others
- We have spoken to people involved with a range of research projects: vaccine trials, pharmaceutical and other intervention trials, and observational studies.
- We have conducted a review of publications exploring or addressing ethical and practical challenges associated with research conducted in West Africa during the Ebola outbreak. Over 2,000 peer-reviewed articles were selected for screening by members of the research team; of these, over 100 were selected for inclusion in the review. Findings are currently being written up for publication.
- Analysis of interviews is underway. Draft report of findings will be ready by November 2017.
- We are preparing meetings to present and discuss draft report of findings with stakeholders and research participants in West Africa in November-December 2017. Participants’ feedback will be incorporated into analysis and output materials.
- We are preparing a meeting of co-investigators in Hamilton in December 2017. This will serve to finalize findings, prepare a recommendations draft paper, and finalize components of a webinar (to be held in January).
Outputs to date
Nouvet, Elysée (2016) Recherche anthropologique au service de la santé publique : méthodes, considérations, et EER (évaluation ethnographique rapide). Training session presented to the Comité National d’Évaluation de la Recherche en Santé (CNERS), Conakry, Guinée, le 19 décembre
Schwartz, Lisa (2016) L’éthique de recherche socio-anthropologique. Training session presented to the Comité National d’Évaluation de la Recherche en Santé (CNERS), Conakry, Guinée, le 19 décembre
Nouvet, Elysée & Schwartz, Lisa (2017) From the front lines: Trialing research ethics in the time of Ebola. Paper presented at the World Association for Disaster and Emergency Medicine Congress on Disaster and Emergency Medicine. Toronto, Canada. April 28th
Nouvet, Elysée (2017) The need to care, learn, and improvise: Enacting research ethics during the West Africa Ebola outbreak. Paper accepted for presentation at Ethox: Oxford Global Health and Bioethics International Conference. University of Oxford, Oxford, England. July 17-18th
Pringle, John (2017) Lessons in research ethics: Experiences of clinical research participation during the West Africa Ebola crisis. Paper accepted for presentation at Ethox: Oxford Global Health and Bioethics International Conference. University of Oxford, Oxford, England. July 17-18th
Pringle, John. Ethical Design of Vaccine Trials in Emerging Infections Workshop. Hosted in conjunction with the Oxford Global Health and Bioethics International Conference and Sponsored by a Wellcome Strategic Award and the Ethox Centre. University of Oxford. July 18-19, 2017
From our colleagues at the World Health Organization:
Nuevas pautas de OMS sobre ética en la vigilancia de salud pública
Estas pautas, recientemente publicadas por OMS, constituyen el primer marco internacional para dar orientación ética en los temas de vigilancia en salud pública. Están disponibles (en inglés) en:http://apps.who.int/iris/bitstream/10665/255721/1/9789241512657-eng.pdf?ua=1
Para recibir más información y recursos sobre ética de la salud pública, suscríbase a la lista de OPS dedicada al tema usando el siguiente enlace: http://listserv.paho.org/scripts/wa.exe?SUBED1=PUBLICHEALTHETHICS&A=1
New WHO guidelines on ethical issues in public health surveillance
These guidelines, recently published by WHO, are the first international framework to provide ethics guidance on issues in public health surveillance. They are available at:http://apps.who.int/iris/bitstream/10665/255721/1/9789241512657-eng.pdf?ua=1
To receive more information and resources about public health ethics, subscribe to PAHO’s list devoted to the topic using the following link: http://listserv.paho.org/scripts/wa.exe?SUBED1=PUBLICHEALTHETHICS&A=1
Palliative Health Care in Jordan for Syrian Refugees
McMaster University’s Global Health student, Madeline McDonald completed this report within the Masters in Global Health program, under the supervision of Dr. Elysée Nouvet.
The Hashemite Kingdom of Jordan shares its northern border with the Syrian Arab Republic, and has been one of the main receiving countries of fleeing refugees since the beginning of the Syrian conflict in 2011. Currently over 650,000 Syrian refugees live in Jordan, most outside of refugee camps (Ministry of Planning and International Cooperation, 2015).
Refugees face many significant health concerns, both acute and chronic. While some are related to the conflict such as injuries and infections, non-communicable diseases claim the most Syrian lives (UNHCR, 2016b). Refugees receive care within the extensive Jordanian health system, which includes public, private and NGO facilities and services. The influx of refugees has put increased strain on both medical and human resources within the Ministry of Health in Jordan.
This paper examined factors affecting provision and accessibility of palliative care Syrian refugees. Palliative care focuses on providing relief from symptoms, pain and stress of a serious illness for patients and families (Razzak & Smith, 2014). Formal palliative care services are only available in the capital city of Amman: one in-patient palliative care unit and one home-based care service (Al Qadire et al., 2014). Jordan has no national policies on palliative care, nor palliative care education for health care providers.
Factors influencing provision and accessibility of palliative care services for refugees fall into three distinct categories:
- Financial factors include costs to the patients and families for registration documents, user fees, medications and transportation. The health care system also incurred sizeable costs from providing care for the incoming refugees in addition to citizens.
- Systemic and organizational factors complicate access to care through rigorous identification and registration requirements for refugees. Health care services are not evenly dispersed, nor are they equally accessible to all. Strict regulations surrounding the distribution and use of opioids restrict use for pain management.
- Important cultural and ideological factors include a tradition of non-disclosure about poor prognosis, and the role of the family unit in decision-making and caring for patients. Many Muslims have strong religious beliefs about illness and death, which are reinforced by cultural norms. Finally, negative perceptions, misconceptions, and lack of awareness about palliative care, pain management and the use of opioids play an important role.
In conclusion, some future directions for research and policy are proposed for the national and international levels. These will support improvement and expansion of palliative care services in Jordan as a resource- and cost-effective way to provide better care for refugees and citizens alike.
PHOTOGRAPH: Syrian refugees seek medical attention at the Jordan Health Aid Society Clinic in the Zaatari refugee camp, located 10km east of Mafra, Jordan on June 04, 2014.
Photo © Dominic Chavez/World Bank Photo ID: Jordan_EDIT_005