Ryoa Chung is an Associate Professor in the Department of Philosophy at the Université de Montréal.
Matthew Huntis an Associate Professor and the Director of Research in the School of Physical and Occupational Therapy at McGill University.
This article originally appears on the University of Edinburgh Law’s Justice in Global Health Emergencies & Humanitarian Crises Blog.
“Access to information has been described as a humanitarian good, alongside other basic needs such as food, water, shelter and healthcare . Accountability is a major priority in the humanitarian sector, including accountability of non-governmental organizations toward the communities they serve. Coordination of aid between humanitarian organizations, and with local governments and agencies, has been identified as a key concern for effective crisis response . And yet, All three of these activities – sharing information, practicing accountability and coordinating aid responses – are predicated upon the mobilization and exchange of knowledge, and serve to illustrate their centrality to humanitarian action. Important ethical concerns exist, however, when some individuals or groups are excluded from the pooling and exchange of knowledge. One source of exclusion relates to the linguistic dimensions of humanitarian aid: what languages are spoken by whom and for which purposes, what language barriers exist, what credibility or authority is or is not associated with people speaking certain languages, and whether translation is available….”
Fear and dread of Ebola is shared by patients, healthcare providers and the general public. Some of this fear comes from a lack of understanding of how the disease is experienced combatted. Follow this link to read a commentary by HHERG’s Sonya de Laat, Postdoctoral Fellow in Humanitarian Health Ethics at McMaster University, on the role of a television set in contributing to a change in perception about Ebola Virus Disease.
Here is the blog post in French / voici la poster en français:
IDEES DE MOURIR DANS L’HONNEUR EN GUINEE
L’étude «L’aide quand il n’ya plus rien à offrir» comprenait une étude de cas sur les soins palliatifs dans les centres de traitement Ebola en Guinée lors de l’épidémie de 2014-2016. Son objectif était de capturer les points de vue des professionels de santé, des décideurs publics et des membres de la communauté afin de mieux soutenir les soins de fin de vie. Des entretiens semi-structurés ont permis d’explorer les besoins, les attentes, les perceptions et les défis associés aux soins de fin de vie dans le pays pendant la crise Ebola dans le pays ETC.
En tant que coordinateur de la recherche guinéenne pour le groupe de recherche sur l’éthique en santé humanitaire, j’ai mené des entretiens avec des participants de mon pays sur leurs expériences en matière de soins de fin de vie et de soins palliatifs au cours de l’épidémie. Malgré l’intensité de la situation, l’idée de mourir honorablement a été maintes fois soulignée comme importante.
Ce blog décrit les perceptions des Guinéens de ce qu’ils appellent «mourir en honneur», ou de ce que nous comprenons maintenant comme des soins prodigués aux patients mourants, ainsi que des symboles, actes et rites consacrés à cet événement.
La République de Guinée est un pays laïc. Bien que cette laïcité soit garantie par la Constitution, elle s’inspire de la pluralité et du respect des croyances traditionnelles.
La diversité des croyances et le fait que seulement 19,1% de la population a atteint le secondaire ou le secondaire ou que seulement 1,2% d’entre eux savent lire une phrase complète, ont une incidence sur la perception qu’ont les Guinéens de la maladie, des types et des lieux de soins, de la personnalité des soignants et des lieux et les circonstances de la mort.
L’histoire, les conditions économiques et les épidémies passées guinéennes influencent d’une manière ou d’une autre la perception de l’idée de mourir dans l’honneur. La représentation et les symboles de «l’honneur» sont également perçus différemment en raison des conditions économiques préexistantes personnelles, valeur accordée aux cérémonies funéraires ou importance accordée aux visites des membres de la famille proche.
Malgré la diversité des perceptions, comparé aux soins médicaux des patients, le soutien psycho-social fourni par les membres de la famille au patient mourant est considéré comme l’élément le plus «honorable» de la mort et est considéré comme plus important que toute capacité financière d’acheter des médicaments.
Perceptions des participants à l’étude explorant les soins palliatifs dans les centres de traitement de base guinéens
Débordant de patients dans les ETC, peu de temps a été consacré aux soins des patients, dont beaucoup mouraient. Normalement, on ne passait pas plus de 45 minutes à la fois dans l’unite de patient. De plus, de nombreux membres du personnel recrutés sur le plan national ne se sentaient pas à l’aise avec l’administration de morphine pour soulager la douleur. Il y avait aussi beaucoup de méfiance vis-à-vis des soins fournis dans les ETC à cause de diverses rumeurs. Dans ce contexte, le respect du concept de «mourir dans l’honneur» a nécessairement pris de nouvelles formes. Cependant, on a toujours considéré que le soutien personnel, généralement de la part des membres de la famille, était d’une importance capitale.
Ces déclarations d’anciens patients atteints d’ETC fournissent une preuve remarquable de l’importance de la signification de la famille dans l’idée de mourir en honneur pour les Guinéens. Selon les participants:
Participant2 :-Moi je pense qu’on doit être entouré par des personnes qu’on aime qui soutiennent moralement et que tu te sentes aimé avant que Dieu ne te retire ce qu’il t’a confié.
Particpant2 : – la famille fait partie de ces personnes les médecins traitants ; la famille pourquoi, c’est pour ne pas que tu te sentes abandonné. Le medecin pourquoi ? Par ce que , un patient même si un patient doit mourir, il se dit que son medecin est son remède.
Participant 8 : -c’est de faire des bénédictions au mourant. C’est ce qu’il a besoin pour que son âme lui enlevé dans la douceur.
Participant14 : -Ceux qui viendront vont s’occuper de toi. Ils vont rendre propre et vont faire les ablutions avant de toucher à un cadavre – tu vas mourir avec presque tous les membres de la famille, c’est-à-dire tu es assisté moralement sur tous les plans. Donc sur le plan social, tout est là.
Respirant le dernier souffle sous le soutien moral des membres de la famille et / ou du personnel de santé, les bénédictions ainsi que les conversations données par les parents avant et après la mort sont des éléments essentiels de la mort en honneur en Guinée.
En fin de compte, malgré la diversité des points de vue et des opinions parmi les Guinéens, la grande majorité des Guinéens observent des normes sociales. Les patients à l’hôpital peuvent être visités moins souvent, mais à partir du moment de la mort, les cérémonies funéraires sont organisées par un grand nombre de membres de la famille du monde entier: des bœufs sont tués, des sacs de riz arrivent pour un festin. Il a peut-être fallu un quart de ces investissements pour acheter une ordonnance au patient, cette dépense économique symbolize que la mort n’est pas facilement acceptée, des questions sont posées sur la raison ou la raison en signe de respect et de dévotion. L’appui moral par le biais de l’interaction familiale avant la mort d’une personne et de ses (re) liens familiaux après la mort contribue à soutenir l’idée de «mourir d’honneur» en Guinée.
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.
The Rohingya people have been living in Myanmar for generations, however, they are not recognized as citizens there. The government consider them as migrant labourers who came from India and Bangladesh during British rule. When the Myanmar government passed the Union Citizenship Act in 1948 they did not give citizenship status to Rohingya, only providing them with foreign identity cards. They were also excluded when the government passed the new citizenship laws in 1982. The government restrained their movement and limited their right to work, study or access health care services. The Myanmar military cracked-down on the Rohingya several times in the name of controlling the Arakan Rohingya Salvation Army (ARSA) terrorist group. The ARSA, however, are not exclusively seen as terrorists; they consider themselves as protector of the Rohingya community.
Article By Dr. Dónal O’Mathúna, PhD, Associate Professor in the School of Nursing & Human Sciences, Dublin City University, Ireland and in the College of Nursing at The Ohio State University, USA. He is the director of the Center for Disaster & Humanitarian Ethics (http://www.ge2p2.org/cdhe), and the Principal Investigator of the PREA research project investigating ethical issues encountered during humanitarian research (http://PREAportal.org).
The Post-Research Ethics Analysis (PREA) project is a funded research project with two main aims. One is to learn lessons about actual research ethics issues and innovations from health research conducted in humanitarian crises. The second is to develop a tool to facilitate and promote ethical reflection among various stakeholders in such research projects.
The project was the brain-child of Dr. Chesmal Siriwardhana, arising from his experiences in the field and his desire to ensure that research participants were respected in research. Over a number of years while at Anglia Ruskin University, and then as Associate Professor in the Department of Population Health at the London School of Hygiene & Tropical Medicine, Chesmal developed and refined the research proposal. The PREA project was successfully funded in 2016 for two years through the R2HC/ELRHA programme. Tragically, Chesmal died in 2017 in a road traffic accident just as the project was getting started. The new Principal Investigator is Dr. Dónal O’Mathúna, Associate Professor in the School of Nursing & Human Sciences at Dublin City University, Ireland and in the College of Nursing at The Ohio State University, USA.
The PREA project arose in recognition of the growth in humanitarian health research which is crucial to provide evidence to guide decision-makers in humanitarian contexts. Health research in such contexts, including during disaster relief, often involves traumatized, vulnerable populations and faces numerous ethical challenges. The PREA project was developed in response to anecdotal discussions and team members’ personal experiences that research in humanitarian crises faces difficulties with the current research ethics governance model. Attention has focused on issues of ethical approval procedures and informed consent, but anecdotal evidence suggests that other ethical challenges predominate. The PREA team is concerned that procedures focused mostly on ethics approval prior to research starting may unintentionally overlook the actual ethical challenges experienced during and after the implementation of research projects. As a result, we believe that research is needed into the actual experiences of researchers (and other stakeholders and participants) involved with humanitarian research. A manuscript arguing this case and providing justifications has been submitted for publication by members of the PREA team and will be linked here when available. In addition, tools that help facilitate ethical reflection and decision-making throughout the research process would be helpful, especially in projects involving vulnerable participants.
The PREA project will gather evidence on the actual experiences of research ethics issues by researchers, ethics committees and other stakeholders when conducting health research in humanitarian and disaster settings. This will be done by carrying out qualitative interviews in a number of humanitarian settings in countries in Asia and Africa. Local researchers will be trained to carry out the interviews and thus help facilitate the development of local research infrastructure. Currently, research ethics approval and other permissions are being obtained for the various sites. By interviewing those involved in the conduct and review of humanitarian research, insight will be gained into the actual ethical issues encountered during the research process. We are also very interested in learning about innovative ways that researchers have responded to ethical challenges so that we can learn from other teams and share best practice.
The interviews from the different sites will be analyzed qualitatively and themes identified that will be used in developing a tool to help future researchers reflect on the ethical issues in their research projects. An early version of this tool will be piloted in each of the sites where interviews will be conducted as part of a research ethics training programme to be delivered in each country. This will give local researchers an opportunity to comment on the qualitative analysis and the developing PREA tool. In this way, the PREA project aims to contribute to the promotion of ethical values and practices in the conduct of humanitarian health research. In keeping with Chesmal’s vision and passion, we hope this will help promote humanitarian health research of the highest ethical standard, and help ensure future participants and their communities are respected throughout their involvement in research.
Dire words abound: “Global forced displacement hits record high” and “We are currently witnessing the largest and most rapid escalation ever in the number of people being forced from their homes”. The number of people in flight has grown steadily over the last four years to the point that there are more than 65 million people forcibly displaced from their homes, a level not seen since the Second World War.
Numbers say a lot, but they don’t tell us everything. They don’t tell us about traumatic journeys, about the anguish of taking impossible risks and navigating complex networks of saviors and swindlers. They say nothing of the despair endured by the internally displaced whose needs get overlooked.
As a teen, I was highly influenced by the writings of the moral philosopher Peter Singer. His book “Animal Liberation” was unlike anything I had read.  Singer validated my decision to adopt a vegetarian diet against much societal pressure. His writings also helped me to frame my understanding of the gross imbalances of wealth in the world and to view disparity as other than natural or inevitable.
Famously, Singer devised the thought experiment of a drowning child: 
On your way to work, you pass a small pond. … You are surprised to see a child splashing about in the pond. As you get closer, you see that it is a very young child, just a toddler, who is flailing about, unable to stay upright …. If you don’t wade in and pull him out, he seems likely to drown. Wading in is easy and safe, but you will ruin the new shoes you bought only a few days ago, and get your suit wet and muddy. What should you do?
Obviously a decent person would wade in and save the child. Singer uses the thought experiment of the drowning child to argue that those of us in affluent countries have an ethical duty to help distant strangers as we do to help those in close proximity: that distance (geographic or affective) does not justify deadly neglect. So then what of the estimated 5.9 million children who will die before reaching age five as a result of diseases that are readily and affordably prevented and treated? Although Singer’s thought experiment is problematic and subject to critique, it is influential and compelling.
Its parallel with the Global Migration Crisis is stark. Singer’s drowning child has drowned, is drowning.
In April 2015, the humanitarian organization Médecins Sans Frontières (MSF) took the unprecedented step of launching search, rescue and medical aid operations in the Mediterranean Sea. Its aid workers quickly discovered that more was required than pulling people from the water. An MSF nurse put it best, “Their bodies tell us about the horrible things they’ve been through.”
As with so many crises of humanity, humanitarian and other civil society organizations are wading in where governments refuse to tread. The humanitarian response to the Global Migration Crisis is an act of defiance and solidarity. It involves care for victims of rape and psychosocial support for survivors of detention, torture, sexual exploitation and human trafficking. While these are noble efforts, they are increasingly thwarted by official indifference, obstruction, and outright belligerence on the part of governments and anti-immigration forces.
It seems we live in an age of moral austerity.
To make sense of moral austerity, it helps to look to the social, economic and political forces that shape the realm of the possible. The prevailing dominant ideology in our social and economic lives is neoliberalism. The neoliberal paradigm situates us in an era of economic austerity in the wake of the global financial crisis (of its own making). Economic austerity requires moral austerity as our governments impose deep cuts that affect the most vulnerable members of our societies while channelling trillions of our public dollars to private banks and corporations. The system of imposing regressive policies on the heels of destabilizing shocks is aptly described as disaster capitalism. It is a neoliberal logic that sees first to the wants of banks and corporations. Corporate hegemony doesn’t demand our compassion as it does our life savings, and thankfully morality is not finite. So instead, let’s direct our compassion to Singer’s drowning child.
On the basis of Singer’s thought experiment, this is my simple argument for providing succor to the victims of the Global Migration Crisis, for rescuing people in immediate distress, for providing medical and psychosocial care, for opening up safe routes to sanctuary, for allowing people to cross borders with or without travel documents, and for resettling people who require it.
To be clear, the solution to the Global Migration Crisis will be neither medical nor charitable. We must not disassociate the crisis from broader injustices that are forcing displacement, including war and political violence, the bombing of schools, hospitals and civilians with impunity, climate crisis and ecological collapse from ruthless resource extraction and agribusiness, and what political theorists call accumulation by dispossession. We can expect to see more and more drowning children in an ever expanding pond. But by exercising our compassion, supporting humanitarian and other civil society organizations, and holding our governments accountable, there may be hope yet for Singer’s drowning child and for us.
John Pringle can be reached at email@example.com.
You can find an additional commentary at John’s Huffington Post page: http://www.huffingtonpost.com/entry/the-worlds-your-detention-center-as-humanity-wrings_us_5919b5dee4b02d6199b2f168
The New York Declaration for Refugees and Migrants, adopted by the United Nations GEneral Assembly in September 2016, stresses that root causes should be addressed “through the prevention and peaceful resolution of conflict, greater coordination of humanitarian, development and peace-building efforts, the promotion of the rule of law at the national and international levels and the protection of human rights”. The international community has thus recognized “a shared responsibility to manage large movements of refugees and migrants in humane, sensitive, compassionate and people-centered manner”.
UN Document A/71/L.1. (paragraph 11)
Refugees & Migrants and Ethical Responsibility for their Health Care:
It is more than simple generosity, simple charity.
It aims to build spaces of normalcy in the midst of what is abnormal.
More than offering material assistance, we aim to enable individuals to regain their rights and dignity as human beings.
Nobel Lecture by James Orbinski, Médecins Sans Frontières, Oslo, December 10, 1999
Since the start of the Syrian conflict in 2011, Lebanon has been host to incoming refugees. The UNHCR estimates 1,050,877 Syrians are now in Lebanon, amounting to 25% of the Lebanese population. Refugees are concentrated in the North and Bekaa regions, host communities that are already poor, underserved and vulnerable.
The large and constant influx of Syrian refugees into Lebanon has greatly strained the Lebanese healthcare system and economy. Many local and international NGOs, humanitarian organizations and governmental agencies are involved in providing humanitarian assistance and health services to Syrian refugees. Yet, there remain existing structures that limit refugee access to essential health care services, including poor coordination between them. The result is a rise in communicable diseases, increased risk of epidemics, suboptimal control of chronic diseases, and other health related matters.
How can the Lebanese MOPH and other stakeholder organizations secure better access to essential and urgent healthcare needs of Syrian refugees?
It is important to promote access to Essential Health Care Services for Syrian Refugees in Lebanon and to recognize the severe shortage in financing and unmet promises by the international community. An immediate action and far greater support from the international community is needed to address the needs of refugees in Lebanon.
Recommendations for the MOPH and international aid agencies:
Develop an essential package of healthcare services for Syrian refugees and Lebanese people.
Develop a mechanism at the level of the government to raise funds to finance the delivery of the essential package.
Expand the number of primary healthcare centers, and hospitals that are within the humanitarian sector.
Developing refugee health information system through:
Identifying priority data needs and requirements;
Developing guidelines for data collection, and data use;
Establishing a mechanism for data monitoring, data sharing between all stakeholders including the private sector.
Invest in building capacities of local infrastructure and local government (municipalities) to handle crisis situations.
Explore mechanisms to increase transparency in the work including resource allocation of NGOs and other agencies in delivering health interventions.
Invest in decentralizing decision making capacity at the level of the government departments to match interventions and aid to the needs of the local community.
Identify research priorities on refugee health.
Strengthen the stewardship function of governmental departments and having a lead organization that is capable to play a major role by coordinating and establishing effective partnerships with local and international agencies.
About the Author:
Michel Daher, MD, FACS
Professor of Surgery, Univ of Balamand
Secretary General, Lebanese National Ethics Committee
Vice-Chair, National Committee for Palliative Care
Saint George Hospital-UMC, Beirut- Lebanon firstname.lastname@example.org
Photo Credit: One-month-old baby boy, Walid, is comforted by his mother after a check-up provided by UK aid at a Save the Children clinic in Lebanon’s Bekaa Valley. Walid’s mum was worried about him but the diagnosis was just that’s he suffering from colic, which will hopefully get better by itself in time. The UK is supporting Save the Children to provide access to primary healthcare for thousands of Syrian refugee children in Lebanon, as well as ensuring that hundreds of pregnant Syrian women have access to anti-natal care. To find out more about how the UK is responding to the humanitarian crisis in Syria and its neighbouring countries, please see:www.gov.uk/government/news/syria-the-latest-updates-on-uk… Picture: Russell Watkins/Department for International Development
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.