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Perceptions of EVD Research — August 2017 Progress Report

One year into this project, we are finalizing data collection, moving forward with analysis, and have begun dissemination activities. Progress includes:

Fieldwork:

  • 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.

Analysis:

  • 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).
EVD Report Pic
Photo: Ebola education mural outside Université Sonfonia, Conakry, Guinea.

Outputs to date

Invited Presentations

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

Peer-Reviewed Presentations

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

Workshop Participation

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

 

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New Fears, Old Problems – Palliative Care, EVD & the DRC

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.

Dr. Escobio

 

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.