Follow the link to reach an article published in the CHEPA newsletter reporting about the Humanitarian Health Ethics research group’s events in Geneva, that took place in September 2018.
HHE research group in the news.
HHE Representation at HSR2018, Liverpool
From 8-12 October the Fifth Global Symposium on Health Systems Research was held in Liverpool, UK.
The HHE research group was well represented with a presentation on the Perceptions of Ebola Virus Disease Research project by Ani Chénier entitled “Beyond Triumphalist Discourses” and a poster on the Palliative Care in Humanitarian Crisis settings.
From the study on perceptions of EVD research:
The full citation of the presentation is:
Elysée Nouvet, Ani Chénier, Oumou Bah-Sow, John Pringle, Sékou Kouyaté, Sonya de Laat, Matthew Hunt, Carrie Bernard, Lynda Redwood-Campbell, Laurie Elit, Lisa Schwartz, Beyond triumphalist discourses: West African voices on the need to recognize and sustain national research capacity in the wake of the 2014-6 Ebola epidemic. Fifth Global Symposium on Health Systems Research, 8 –12 October 2018,Liverpool, UK.
ABSTRACT:
BACKGROUND The 2014-6 West African Ebola epidemic, in which a neglected disease for which no effective treatment or vaccine was yet known claimed over 11,000 lives, was a stark reminder of the essential role that health research plays within health systems.
In 2016, we launched the “Perceptions and moral experiences of research conducted during the West Africa Ebola outbreak” study. This qualitative study seeks to better understand socially-situated practices and moral experiences of research conducted in public health crisis situations, and to deepen understanding of challenges to and strategies for the ethical conduct of research during public health emergencies. It explored, among other issues, the practical and ethical complexities of international research collaborations established during the outbreak.
METHODS We conducted in-depth semi-structured interviews with 108 stakeholders directly involved in research at trial sites in Guinea, Sierra Leone, and Liberia. Participants included: 1- people having participated in clinical and persistence studies; 2- people engaged in the conduct of research (as investigators or research staff), 3- local and international research ethics board members; 4- governmental and civil society leaders. Most (91%) were from West African countries.
RESULTS Participants identified many strengths of research conducted during the outbreak, notably: 1) the success of some international partnerships (especially vaccine trials), 2) the development of innovative and adapted strategies for communicating with participants, 3) opportunities for capacity building, especially for first-time researchers, and 4) rigorous and constructive oversight by national research ethic boards.
Key challenges or failures included: 1) limited opportunities for higher-level engagement of affected-country researchers within international partnerships, 2) limited engagement of mid- or late-career researchers in the development or leadership of studies, 3) unequal access to and control over research materials like bio-samples, and 4) failures to sustainably invest in national research institutions.
CONCLUSIONS Our findings highlight the important role played by health research within local and national health systems, and complicate triumphalist discourses about the role of ‘capacity building’ in international research. During the 2014-6 West African Ebola outbreak, efforts towards capacity building were appreciated by many. Yet many also expressed frustration with the lack of investment in national research infrastructure and institutions, and the lack of opportunities for mid- and late-career researchers from affected countries. This had important practical implications, notably for the setting of research priorities that reflect needs and possibilities at the national level. Capacity must not only be built: it must also be recognized, supported, and sustained.
From the study on palliative care in humanitarian crises:
Full reference for the poster:
de Laat, S., Matthew Hunt, Elysée Nouvet, Olive Wahoush, Kevin Bezanson, Carrie Bernard, Lynda Redwood-Campbell, Laurie Elit, Wejdan Khater, Oumou Bah Sow, Emmanuel Musoni, Rachel Yantzi, Ani Chénier , Lisa Schwartz, Dying in the Margins: Palliative Care, Humanitarian Crises and the Intersection of Global and Local Health Systems, Fifth Global Symposium on Health Systems Research, 8 –12 October 2018, Liverpool, UK, Abstract ID: 3989
The poster is available below (& here as a PDF):
Abstract:
OBJECTIVES There is no doubt that the primary goal of humanitarian healthcare has to be to save lives. Given the extremity of the crises in which humanitarians respond, not all lives can be saved. There is a growing acknowledgment of the role of palliative care in humanitarian healthcare. Here we present an interpretive description of the experience of palliative care in a variety of humanitarian crisis settings. Our objective is to map the diversity of those experiences and to examine the innovations and inconsistencies of global and local health systems to assess the obstacles and opportunities of these health systems in the support of palliative care during international humanitarian crises.
METHODS Four case studies were identified through stakeholder meetings and key informant interviews that represent a broad range of humanitarian emergency situations where palliative care needs arise:
- A public health emergency: Guinea during the Ebola Crisis;
- An acute conflict & refugee situation: Syrian refugees in Jordan;
- A protracted refugee situation: Congolese and Burundian refugees in Rwanda; and,
- Natural disaster situations: various geographic settings.
For each case study, in-depth, semi-structured interviews exploring experiences, needs, frustrations, and possibilities for palliative care were conducted with patients or family members of individuals with a terminal or life-threatening condition suited to palliative care. Along with interviews with crisis-affected people, local and international humanitarian healthcare providers were interviewed at each site.
RESULTS Global and local health systems—independently and intersecting with each other—emerged as a recurrent source of barriers to the provision of palliative care. Dominant themes include: global restrictions and local cultural anxieties to accessing essential medications for symptom relief; importance of culturally relevant, and locally informed, care and psychosocial support; the lack of international and local palliative care guidelines, training, and support for the provision of palliative care during international humanitarian crisis events. Changes to global health systems and improved interaction between local and international actors were cited as enablers to comprehensive palliative care provision. Palliative care was recognized as an essential component of holistic, comprehensive humanitarian healthcare, and should never act as a substitute to health system improvements for curative care.
DISCUSSION The alleviation of suffering is central to the work of humanitarian healthcare, and yet competing priorities often result in a lack of attention to palliative care. Our study presents critical insight onto the role of local and global health systems in the provision of palliative care in contexts of humanitarian crises.
A Canadian Medical Family’s Humanitarian Legacy
By Gautham Krishnaraj, for the Canadian Red Cross Blog
“Over 150 years ago, the Red Cross Red Crescent Movement was born in the wake of the Battle of Solferino in 1859. Movement founder Henry Dunant was so moved by the immense suffering he saw that he called upon local villagers to come to the aid of the wounded. Among those who responded to the call were the Women of Castiglione, countless European medical professionals and Norman Bethune – a Canadian surgeon from Ontario. Dunant himself spoke of Bethune in A Memory of Solferino, recognizing him by name as “Norman Bettun”.
Nearly a century later, Bethune’s grandson – also named Norman – would follow in his grandfather’s footsteps, playing a critical role in the 1938 Sino (Chinese)-Japanese War. The younger Bethune was an established surgeon, having invented more than a dozen surgical devices, including the Bethune Rib Shears which are used to this day. During the 1936 Spanish Civil War, Bethune organized one of the first mobile blood transfusion services. He later travelled to China with the International Committee of the Red Cross (ICRC) to lead a Canadian-American medical team during the Sino-Japanese War. He wore his Red Cross badge with pride, performing surgeries on the frontline to casualties on both sides of the conflict, as countless Red Cross surgeons continue to do to this day.”
Read more about the Bethune family and their contributions to humanitarian health care through the decades here: http://www.redcross.ca/blog/2018/8/a-family-on-the-frontlines—celebrating-norman-bethune
Reposted from original blog with permission of the author.
McMaster Global Health Speaker Series to Feature HHE’s Dr. Lisa Schwartz
Thursday, December 6, 2018
Dr. Lisa Schwartz
Arnold L. Johnson Chair, Health Care Ethics; Professor, Health Research Methods, Evidence and Impact, McMaster University
“Ethics, Obstacles and Palliative Care in Humanitarian Settings”
MDCL 3020 – 4:30-6:30PM
Other speakers and dates:
Monday October 22, 2018
Dr. Govindakarnavar Arunkumar
Dr. Govindakarnavar Arunkumar
Professor & Head, Nodal Officer (Influenza Lab), Manipal Centre for Virus Research, Manipal Academy of Higher Education
“Nipah Virus: An Emerging Pandemic”
MDCL 3020 – 4:30-6:30PM
Thursday November 22, 2018
Dr. Stuart MacLeod
Professor Emeritus, Pediatrics, University of British Columbia
“New Approaches to Improving Therapeutic Choices for Children: A Global Health Priority”
MDCL 3020 – 4:30-6:30PM
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Upcoming Event: September 26
Small Humanitarian Acts that Make All the Difference in End of Life Care?
Evening Panel Discussion | 18:30-20:30 | Maison de la paix
Introductory remarks—
18:30-18:40
Dor
is Schopper
is SchopperDr. Schopper is professor at the medical faculty of the University of Geneva and director of CERAH since July 2011.Trained as a medical doctor,Schopper spent several years with Médecins Sans Frontières (MSF) in the field. She was president of the Swiss branch of MSF and twice president of the MSF International Council. In 2001 Doris Schopper was asked to constitute an Ethics Review Board for MSF International. Since then she has chaired the Board coordinating the ethical review of MSF research proposals and providing advice on ethical matters to the organisation. https
://www.cerahgeneve.ch/cerah/faculty-staff/academics/prof-doris-schopper
://www.cerahgeneve.ch/cerah/faculty-staff/academics/prof-doris-schopper 18:40-18:55
Lisa Schwartz
Prof. Schwartz is the Arnold L. Johnson Chair in Health Care Ethics with the Faculty of Health Sciences, Associate Professor in the Department of Clinical Epidemiology and Biostatistics, Associate Director of the Centre for Health Economics and Policy Analysis (CHEPA), and Associate Member of the Department of Philosophy, at McMaster University. Dr Schwartz is trained as a Clinical Ethics Consultant and has used and devised frameworks for the ethical challenges that arise in clinical care in high and low resource settings and in humanitarian crises settings. https://humanitarianhealthethics.net/home/about/lisa-schwartz/
18:55-19:00 – Doris Shopper’s introduction of the keynote speaker
Keynote message—19:00-19:20 (+5 mins of clarification questions)
Paul Bouvier on Small Acts of Humanitarian Kindness
Dr. Bouvier works with the International Committee of the Red Cross (ICRC) as course coordinator (the HELP course)and chair of the group on ethics in the practice of humanitarian action. Former ICRC Senior Medical Advisor, he is a medical doctor with specialization in pediatrics and public health, and Associate Lecturer at the Institute of Global Health, University of Geneva, where he has carried out research and prevention programs on child sexual abuse and violence. Along with his medical and training activities, Dr. Bouvier has also applied the perspectives he developed through his various roles and field experience in crises into various philosophical reflection and medical humanities activities. From published reflections on “small things and humanity” on the part of delegates visiting people in detention (2012), to an art history lesson on Francisco Goya’s Disasters of War prints in prefiguring Dunant’s Solferino relief efforts by several decades (2011), Dr. Bouvier has demonstrated his skills as a rich and diverse thinker on issues of suffering, morality and what it means to be human. A further complement to his professional work, and his intellectual writing, he has consulted on exhibitions at the International Red Cross and Red Crescent Museum<https://www.redcrossmuseum.ch/en> in Geneva including the main “Humanitarian Adventure” halls, and the most recent publication “Prisoners’ Objects<https://www.redcrossmuseum.ch/en/product/prisoners-objects/>.”
19:25-19:30—Schwartz introduces the panelists
Panelists—19:30-20:15
Ibraheem Abu SiamAbu Siam, RN, CNS, is a Public Health Officer at UNHCR (Jordan). He is an experienced Public Health Specialist with a demonstrated history of working in the international affairs industry. Skilled in Policy Analysis, Government, Program Evaluation, Public Policy, and Research, he is a dedicated community and social services professional with a Master’s degree focused in Public Health/Community Nursing from Jordan University for Science and Technology. You can see him here on a video from the International Council of Nurses speak on the topic of safeguarding health during crises: https://www.youtube.com/watch?v=GFY8yHd_i_E
Emmanuel Musoni
Dr. Musoni is a Psychiatrist at the Central Hospital of the University of Rwanda in Kigali (CHUK). Before starting his postgraduate studies in psychiatry, Dr. Musoni was the Clinical Director at the Masaka District Hospital, Rwanda. He also served as a Medical Officer in Darfur-North SUDAN for the UNAMID Peacekeeping mission. His research interests include bipolar disorders and palliative care. He is currently carrying out research on the effects and challenges of psychoeducation on patients with bipolar disorder in Rwanda. https://humanitarianhealthethics.net/home/research/hhe-research-studies/pall-iphc/case-study-conflict-protracted-refugees-rwanda/
Sonya de LaatDr. de Laat is the Postdoctoral Fellow in Humanitarian Health Ethics at McMaster University, Canada. With backgrounds in anthropology and media studies, her interests and approaches are mixed and multidisciplinary—straddling social science, health science and humanities. Her research interests include the moral, political and historical dimensions of humanitarian visual culture. Currently, she is focusing on the role of photography in shaping people’s impressions of and in mediating responses to global migration, with a particular focus on the conditions and experiences of being a refugee, and on humanitarian (health)care for refugees. www.sonyadelaat.weebly.com
Olive WahoushDr. Wahoush has been an advocate and researcher of refugee health care since 1987. She came to this topic through teaching undergraduate nurses maternal newborn health in a refugee camp in Jordan and through hospital administration and volunteer roles in Pakistan and Canada. Through her roles at the School of Nursing at McMaster University, Dr. Wahoush was instrumental is leading and promoting research with refugees, newcomers and other underserved populations. Recent research Dr. Wahoush has been involved in or leading include studies focused on reproductive health, health and resettlement of refugees and refugee-like families in Canada and exploring the selection process for refugees in transit countries like Jordan.
20:15-10:30 — Schopper & Schwartz closing remarks
Featured publication
From the publisher:
“Humanitarian Action Ethics explores the ethical dilemmas at the heart of humanitarian action in the 21st century, turning theory into practice for enabling effective change.
- The most comprehensive and up-to-date work on humanitarian ethics currently available.
- Brings together contributions from humanitarian and health professionals, philosophers and social/political scientists, covering a wide range of countries and addressing the most pressing concerns facing modern humanitarian work.
- Goes beyond the theoretical to consider how such ethical concerns might inform more effective practical approaches to humanitarianism.
- Subjects covered include volunteer tourism, gender-based violence, the effects of globalization and highly politicized aid environments.”
Contributions from HHERG and HumEthNet Members:
Matthew Hunt and Jingru Miao explored “Moral Entanglement and the Ethics of Closing Humanitarian Projects”.
Rachel Kiddell-Monroe and her colleagues discussed “Humanitarian Ethics in Médecins Sans Frontières/Doctors Without Borders”.
John Pringle and Toby Leon Moorsom reflected on “An Ethic of Refusal: The Political Economy of Humanitarianism Under Neoliberal Globalisation”.
Together the contributions in this publication inform how new perspective on humanitarian ethics can enhance humanitarian action.
Receive 30% off your purchase of this book with the code ACTIONETHICS at the following link: https://www.zedbooks.net/shop/book/humanitarian-action-and-ethics/
In Focus: Paul Bouvier
Paul Bouvier is working with the International Committee of the Red Cross (ICRC) as the coordinator of the HELP course – Health Emergencies in Large Populations – and chair of the group on ethics in the practice of humanitarian action. The former ICRC Senior Medical Advisor, he is a medical doctor with specialization in pediatrics and public health, and Associate Lecturer at the Institute of Global Health, University of Geneva, where he has carried out research and prevention programs on child sexual abuse and violence. His work at the ICRC focuses on ethical issues in humanitarian action and training humanitarian professionals worldwide in public health and ethics to respond to humanitarian crises.
Along with his medical and training activities, Dr. Bouvier has also applied the perspectives he developed through his various roles and field experience in crises into various philosophical reflection and medical humanities activities. From published reflections on “small things and humanity” on the part of delegates visiting people in detention (2012), to an art history lesson on Francisco Goya’s Disasters of War prints in prefiguring Dunant’s Solferino relief efforts by several decades (2011), Dr. Bouvier has demonstrated his skills as a rich and diverse thinker on issues of suffering, morality and what it means to be human. A further complement to his professional work, and his intellectual writing, he has consulted on exhibitions at the International Red Cross and Red Crescent Museum<https://www.redcrossmuseum.ch/en> in Geneva including the main “Humanitarian Adventure” halls, and the most recent publication “Prisoners’ Objects<https://www.redcrossmuseum.ch/en/product/prisoners-objects/>.”
When considering the shaping of a new generation of humanitarian actors, Dr. Bouvier stresses the importance of developing literacy and practical skills in ethics, to improve decision making in the field. Humanitarian actors, he explains, have lived with the idea that their activities responded in the best possible ways, to their high ethical aims. Some start to realize that in front of complex situations and dilemmas, bearing strong humanitarian values, principles and good will is not enough. We are faced in the field with very challenging, sometimes tragic situations; we have to make very difficult choices, with limited time and resources in front of high needs, and major operational obstacles, including violence and security threats. In order to make ethical decisions in such circumstances we need to recognize and analyze the ethical dimensions and bearings of our decions; and to initiate and ethical deliberation in our teams and institutions, in order to support the decision. This is the task of practical ethics, or practical wisdom in the field.
The humanitarian sector is still far away from such ethical good practice. Ethics in humanitarian action is taken for granted, Dr Bouvier says. A striking example is given by a recent report from an influential think-tank, on operational decision-making in humanitarian response. The review provides interesting analysis of decision-making procedures and protocols, and more informal ways to intuitive, improvised or makeshift decisions, it does not, however, mention the ethical dimensions of difficult decisions in the field: ethics still seems to be implicit and present in all our activity; or perhaps is it conceived as a separate field, for the specialist philosopher and ethicists? either ways, our experience shows that this attitude leads to ethical tensions, sometimes leading to crises, at individual or group level, and when ethical drifts or errors do occur, they represent a major risk for the staff and team in the field, and the institution as a whole. Yet, this risk is still overlooked and ignored.
In order to respond to these needs, training in practical ethics is essential. In 2008, a workshop on practical ethics in humanitarian action was introduced in the ICRC staff integration course, followed by the HELP courses. Since then, the learning approach has been simillar, starting with group sharing and reflection on ethical challenges experienced by participants in their own professional activity. Then the group would choose one case to share with all. This case would be analyzed following a process of ethical analysis and decision-making, before summarizing ethical values and principles in humanitarian action, and the process of ethical decision-making. This approach, starting from situations brought by the participants, proved to be very successful in very different contexts, with different ethical background and traditions, including Switzerland, Qatar, China, Mexico, Kenya, Cuba, Iran, Lebanon, Benin, and the USA.
Based on this fruitful experience, the HELP course recently introduced the Humanitarian Health Ethics Analysis Tool – HHEAT – and used cases from the HHE collection. This approach proves to be also very successful. Key success factors of the HHEAT approach is that, firstly, the cases from the collection bring ethical difficult decisions from the field; secondly, it invites the participants to reflect by their own, to share their reflection in group, and open a deliberation with others, in order to reach a decision; and, most importantly, it does not propose a solution to the case, so leaving a space for reflection and sharing experience. This approach of practical ethics certainly needs skills, experience, and time also, in facilitating the sessions. Managing these learning sessions obviously need strong background on practical ethics, with clear understanding of humanitarian ethical values and principles, as well as good knowledge of, and openness to other cultures and ethical traditions, combined with a clear view of ethical duties and absolute limits, across cultures, notably in front of extreme violence.
Using the HHEAT cases and tool, Dr Bouvier concludes, has some advantages in this respect, from the fact that they wre developed in the context of an international collaboration between academic and humanitarian institutions, in which the ICRC took part. This initiative is deemed to play a very active role in developing ând promoting practical ethics in humanitarian action. The scope of this approach should not be limited to health care, Dr Bouvier suggests, but will very soon expand to the other dimensions of the humanitarian response, including assistance and protection.
[Sources: http://www.icpcn.org/joan-marston/, and personal communication]
Autumn issue of REFLECTIONS: latest edition
The latest edition of the HumEthNet newsletter is now available.
Theme: Ethics training and support for humanitarian practitioners and researchers
In this issue:
– Humanitarian Health Ethics E-module
– In Focus: Paul Bouvier
– Humanitarian Health Ethics Analysis Tool (HHEAT)
– Research in Humanitarian Crises: Resources for Research Ethics Committees
– Case Study in Humanitarian Research Ethics
– Featured Publication
– Additional resources on ethics in humanitarian health research
Reflections editorial policy and subscriptions.
Reflections editors:
Sonya de Laat & Jhalok Talukdar
Sonya de Laat & Jhalok Talukdar
Our email address is:
humethnet@gmail.com
humethnet@gmail.com
Our mailing address is:
Humanitarian Health Ethics Research Group
McMaster University, 1280 Main St. W., CRL-202
Hamilton, On, Canada L8S 4K1
What ethical issues arise in outbreaks and pandemics?
Check out this World Health Organization site containing some valuable resources and points of reflection on ethical issues arising during public health outbreaks and pandemics.
Consider exploring some of the questions coming out of that site through Case Studies or by applying the Humanitarian Health Ethics Research Tool (HHEAT).
We look forward to hearing your thought! Contact us here.
Cut and paste the WHO site in your browser: http://www.who.int/ethics/topics/outbreaks-emergencies/en/
Moral Experiences of Palliative Care: Poster and Graphic
As presented by Matthew Hunt at the 10th World Research Congress of the European Association of Palliative Care (EAPC) 24-26 May 2018 in Bern, Switzerland.
