Follow this link to the blog authored by Sekou Kouyate on the opportunities and challenges of becoming an anthropologist and a qualitative researcher in post-Ebola Guinea.
Kouyate is the research assistant and coordinator for HHERG’s two R2HC funded studies in Guinea: on perceptions of research and on the provision of palliative care during the 2014-16 Ebola Virus Disease outbreak.
Read this new blog post to find out about…
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.
From a new resource on Community of Practice for Integrated People Centred Palliative Care by WHO, firstname.lastname@example.org.
Additional interviews prepared by WHO’s Community of Practice for Integrated People Centred Palliative Care:
|Interview of Dr Christian Ntizimira Médecin Head of Avocacy & Research department of Rwanda Palliative Care and Hospice Organization|
|Interview of Katherine Pettus, Advocacy Officer for Human Rights and Palliative Care at International Association for Hospice & Palliative|
New Fears, Old Problems:
An Appeal for Palliative Care in the DRC Ebola Virus Outbreak
by Dr. Pedro Favila Escobio, MD (MS Palliative Care)
As a medical doctor involved in humanitarian response, I (as many of my colleagues were), was very concerned and followed very closely the evolution of the Ebola Outbreak in West Africa.
I was in the Guinean capital city of Conakry in November 2015 when Nubia, a one month old baby girl and the last Ebola case in Guinea whose mother had died because of the outbreak, was released from the Ebola Treatment Centre. What to do, what not to do, clinical and case management, community involvement, social mobilization, infection and prevention control, priorities, constraints, and the post-Ebola response scenario were all familiar words in my thoughts during that period. Palliative care was not, for whatever reason, in my head.
In Coyah, 50km away from Conakry, just before leaving the country I met a traditional midwife who, during the peak of the outbreak ,was one of the frontline workers in the response to the epidemic. “Despite all the efforts, nobody will bring us back our dead and repair their suffering” she said.
I barely could imagine the suffering of all those affected by the outbreak. Of the approximately 40 million of people around the world in need of palliative care services, only 14% have access to them, mainly in high income countries. Back home, in Spain, during my specialization training as a Family and Community Medicine Doctor and after specialization, palliative care was part of my everyday work life, and a basic component of the integrative health services we provide. So why, working as a humanitarian professional, was I neglecting what I consider a basic pillar in the standard of care?
On 11th May 2017, a new Ebola outbreak in DRC was declared. This outbreak thankfully seems to be coming under control as I write, but this does not change the fact that to this day there are no proven effective treatments or vaccines against Ebola. The mortality rate remains at 50%. Will palliative care be part of what healthcare providers have in their minds, and are they prepared to provide it when facing such deadly outbreaks?
A review of the literature (publication forthcoming) on the clinical management and treatment of EVD in West Africa yields few mentions of care provided to patients in Ebola Treatment Centers that was not curative in intention. Indeed, palliative care is practically absent in reports and recommendations for EVD patient management. Those very few articles that mention palliative care being provided do not include an explanation on the provision of such services.
Two challenges of providing palliative care in an Ebola context are clear from this literature. First, limited understanding of when Ebola patients are nearing death makes knowing which patients are beyond recovery and dying. Secondly, in some cultural contexts and certainly in the three most affected West African countries during the last outbreak, the administration of opioids and other pain relief to dying patients was controversial and required careful perceptions management. In an environment of high distrust, morphine being given before a patient’s death risks being interpreted and reported by surviving patients (and even healthcare staff) as the cause of death. This could cause serious harm to the reputation of ETCs and its staff.
West Africa, DRC, and Beyond
I applaud the recommendations of WHO for the implementation of strategies for prevention and control of the epidemic, which include case management among others. Updated WHO guidelines for the management of EVD patients following the epidemic in West Africa point out that health personnel have an obligation to provide symptomatic relief and palliative care when necessary, and that terminally ill patients require end-of-life care provided by trained personnel, including psychosocial support for the patient and family.
I hope that inclusion of and access to essential palliative care medical kits will be facilitated, along with basic training and sensitization in palliative care for all health personnel working in the response. This will improve decision making and contribute to improvement of the processes of communication between health personnel, patients, family and community.
The recent opening of an ETC in Likati and the possible opening of a new centre in Muma, DRC should be used to assess the quality of care and the correct use of medicines necessary for pain control and patient well-being.
Equally, with the aim of guaranteeing the highest level and quality of care, priority should be given to promoting research on palliative care that allows us to offer conclusions about the effectiveness of palliative care in humanitarian crisis contexts, taking into account the complexity of providing services in such contexts.
Certainly much more should be done to make palliative care part of any health intervention. The first step is to stop the current outbreak of Ebola from DRC, to protect the lives of those affected and to ensure that health professionals, patients, and families know that when survival options have disappeared, it is not necessary to die in pain and suffering.
Pedro Favila Escobio is a medical doctor specialized in family and community medicine, with a master in palliative care working in the humanitarian sector. His practice is focused especially on neglected diseases, displaced populations, migrant health and emergency response. He can be reached at p.favila[at]gmail.com.
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