Moral injury and COVID-19

By Omar Mahboob BMSc and Elysée Nouvet PhD

On April 25, 2020, John Mondello, a recently graduated Emergency Medical Technician stationed in New York City, died by suicide. Mondello was on the front lines of the COVID-19 response as the city faced an overwhelming number of cases and fatalities. Prior to passing, Mondello had described experiencing anxiety to his friends and colleagues, which he attributed to the high call volume, and the witnessing of so much death (1). 

As many countries begin re-opening from their lockdowns, and cases are once again projected to rise, it is imperative to understand the experiences of front-line workers providing care. Over the past month, a team of researchers from Western University, the University of Turin, and McMaster University have been speaking with individuals on the front lines of the pandemic response across the globe. The larger purpose of the study is to: elucidate plans for and concerns related to the provision of care to patients at risk of dying, should critical care needs outweigh available resources;  to discern if and how such triage guidance should be communicated to affected populations; and, identify key social and cultural considerations for this communication and for the provision of care to the critically ill during this pandemic. Although we are in the primary stages of our analysis, and it is too early to make decisive statements on our findings, one thing is clear: many of the participants have described their own stress or expressed concerns regarding the psychological impact associated with being on the front lines during this pandemic. 

Even from the relative comfort of our homes, it is not difficult to imagine why that would be the case. With so many patients in need, hours have been longer than usual for many healthcare workers. The atmosphere is tense as stakes are high: for patients, for providers, for healthcare facilities, for governments and communities. In high-income countries, most have never witnessed so many deaths in such a short time period. Watching patients come in, grow sicker, and in some cases even die without family present feels bad. Personal protective equipment is limited in many contexts. This means that with every shift comes a risk of infection, and passing on that infection to loved ones at home (or sacrificing time with family to limit their exposure and keep them safe). Countless news reports, especially out of Italy in March of this year, and then New York City in April, have recounted the heavy and sometimes psychologically shattering decisions faced by front line providers confronting critical care resource shortages. The need to decide or implement decisions that involve denying potentially life-saving interventions to some patients is not an experience many have faced in our study, but it is one they can imagine and dread. Patient prioritization decision-making, where needs outweigh resources, presents a particular risk of moral injury. 

Moral injury is a term defined by Litz et al. (2009) as an experience that encompasses the following: “[p]erpetrating, failing to prevent, bearing witness to, or learning about acts that transgress deeply held moral beliefs and expectations” (2). Although the term was first applied in a military context, extending its use to this pandemic can provide valuable insight into the potential concerns embedded within triage decision-making processes.

In a healthcare setting, this suggests that those involved in or witness to the prioritization of certain patients for treatment, to the exclusion of others whom they believe could benefit, are at an increased risk of moral injury. Allocation of limited resources, such as nursing staff and ICU-care for COVID-19 patients, has been and continues to be a reality in many localities. For critically ill patients, access to immediate medical attention and/or ventilator care can be the difference between life and death. Although some organizations and experts have released guidance on who has priority for a ventilator if and when the need surpasses capacity (3), guidance does not release healthcare teams at the bedside from the burden of ultimate decision-making and action.  Beyond the bedside, there is the impact on the patient and their family. The moral implications and potentially injurious consequences of making or being a party to such decisions is a reality for many health care workers on the front lines of this crisis. A May 13 2020 WHO report on the mental health impacts of COVID-19 cites studies in Canada, China, and Pakistan confirming increased self-reported depression, anxiety, insomnia, and psychological needs (4).

Across the globe, communities are showing their appreciation for health care workers on the front lines. Through the blaring of horns, the clapping and banging of pots and pans, the message is unmistakable; many are willing to stand with and for those who are risking their lives on the front lines. These gestures are important; however, they are not enough. Understanding how the provision of care during this pandemic affects different health care providers and investing in ongoing psychological support must also be prioritized. 

References:

  1. Edelman S, Moore T, Narizhnaya K, Balsamini D. EMT John Mondello kills himself after less than three months on the job [Internet]. New York Post. 2020 [cited 2020 May 20]. Available from: https://nypost.com/2020/04/25/nyc-emt-commits-suicide-with-gun-belonging-to-his-dad/ 
  2. Litz BT, Stein N, Delaney E, Lebowitz L, Nash WP, Silva C, et al. Moral injury and moral repair in war veterans: A preliminary model and intervention strategy. Clinical Psychology Review. 2009 Dec;29(8):695–706.
  3. Emanuel EJ, Persad G, Upshur R, Thome B, Parker M, Glickman A, et al. Fair Allocation of Scarce Medical Resources in the Time of Covid-19. N Engl J Med [Internet]. 2020 Mar 23 [cited 2020 May 20]; Available from: https://doi.org/10.1056/NEJMsb2005114
  4. United Nations. Policy Brief: COVID-19 and the Need for Action on Mental Health [Internet]. 2020. Available from: https://www.un.org/sites/un2.un.org/files/un_policy_brief-covid_and_mental_health_final.pdf

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Omar Mahboob completed a BMSc in Interdisciplinary Medical Sciences from the Schulich School of Medicine and Dentistry at Western University. He is a research assistant with the Humanitarian Health Ethics research group.

Dr. Elysée Nouvet is a medical anthropologist and assistant professor in the School of Health Studies at the University of Western Ontario, Canada. She has a particular interest in the moral experiences and ethics of care and research in humanitarian and public health emergencies.

COVID-19 in Ethiopia: Challenges, best practices, and prospects

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By Gojjam Limenih

Gojjam Limenih, is a senior lecturer and researcher of Public Health, The University of Gondar and an Advisory Council Member, Ministry of Science and Higher Education of Ethiopia (MoSHE). 

 

Ethiopia may not yet have witnessed the worst of this pandemic. In times of health crisis, such as the COVID-19 pandemic, we need our health systems to be working at their very best. This means that we need to trust our health system; health workers must have the equipment they need to do their job while protecting themselves and others, and healthcare must be accessible for all. Ethiopia’s health system and infrastructure is weak. The latest readiness assessments from the WHO indicate that there is extremely limited intensive care capacity for the treatment of severe COVID-19 cases if the surge comes[4]. The ability to treat severe forms of COVID-19 will depend on the availability of ventilators, electricity, and oxygen, all of which are scarce in Ethiopia. As the Ministry of Health reports, currently, there are only 600 ventilators for over 100 million people [1,2]. Even securing a supply of personal protective equipment (PPE), the first line of defence at the individual level, remains a major challenge.

Strategies and innovation in the face of the unprecedented    

The challenges our country faces in mitigating the spread of COVID-19 are enormous – however, there have been a range of proactive and coordinated efforts to respond to the pandemic. The government has been mobilizing different stakeholders and devising strategies to contain the virus through aggressive health measures and law enforcement. In order to reverse the rising numbers of infections, broader suppression measures were put in place, including closing schools and universities, prohibiting gatherings and promoting “social distancing” to the entire population. The current focus is reducing transmission of COVID-19 through individual and population-level measures, including personal hygiene, physical distancing, testing, isolating and tracking contacts and travel restrictions.

Ministry of Health (MOH) and National Public Health Institute (EPHI), provide regular updates (i.e. held press conferences) to inform the public. The Ministry is also working with a network of experts to coordinate regional surveillance efforts, diagnostics, clinical care and treatment, and other ways to identify, manage the disease and limit transmission. But hospitals are struggling to cope with COVID-19 as they face bed shortages, ICU equipment and testing facilities. To ease this pressure, shelter hospitals are ready and taken as a crucial step to isolate, treat, and triage patients with mild to moderate COVID-19. Hence, large, temporary hospitals are prepared by converting public venues, such as exhibition centres, into health-care facilities to isolate patients with mild to moderate symptoms of an infectious disease from their families and communities, while providing medical care, disease monitoring, food, shelter, and social activities. In Addis Ababa, Millennium Hall and other large avenues are ready for this purpose, which will help to isolate and treat more people who are infected. Many investors are lending their hotels to be prepared as quarantine centres and hospitals which will be crucial to contain the virus. 

Social cohesion and social gatherings are of great importance for Ethiopian society. Churches and Mosques are now closed to limit the spread of the virus. Instead, the government and religious authorities have worked together to launch a television program for all major religions to broadcast their spiritual education so that their followers can continue to observe their faith while staying at home. Nevertheless, the battle is real to keep people at home when the one thing that is so meaningful to most—their spiritual engagement— has been taken away by the pandemic. 

The arrival of the virus in Ethiopia has also given rise to local innovation. There are promising efforts to promote home-grown production of PPE to manage the spread of the virus. Factories in Addis Ababa and other manufacturing hubs have started producing alcohol-based cleaning solutions and hand sanitizer for distribution to high-risk areas. Textile factories are now focused on producing more face masks. Most of the universities are producing hand sanitizers and distributing them to the nearby communities. Researchers and students at Addis Ababa Technology University and manufacturers are working to assemble ventilators from locally sourced components. Notably, all these fast-moving efforts help to stay ahead of the virus long enough to put into place testing, contact tracing, and isolation, as well as temporary intensive care facilities. However, there is a need to better coordinate these scattered innovations towards the goal of greater long-term effectiveness and efficiency in fighting against COVID-19.

Recognizing limitations and uneven impacts

The present efforts to limit the spread of the virus are very encouraging. However, physical distancing and hand washing, globally adopted interventions to combat the spread of COVID-19, remain a major challenge in the context of overcrowding, poverty, and weak health-care systems.

The different measures in place are also urban-centric educational campaigns through media outlets that don’t consider the reality of rural society. It is only those with the privilege of access to radio and television that may hear about coronavirus risks, but not in great detail. Reaching out to the most vulnerable population in rural areas is vital. 75% percent of the Ethiopian people live in scattered rural villages. It requires special attention to prevent the spread before it gets to the villages. If it gets there, there may not be much room for intervention. Access to safe water and sanitation is low in Ethiopia, which inhibits people’s abilities to limit the infection. For now, the isolation of rural villages might shield them from the worst of COVID-19. But the absence of facilities and services makes the possibility of an outbreak in such areas particularly troubling. 

Another challenge for Ethiopia concerns the feasibility of the pandemic suppression strategies being applied. While Ethiopia didn’t decree a complete lockdown, forcing all but the most essential businesses to close down or operate online makes sense to control the spread. But such approaches will hit some people much harder than others. Self–isolation and staying at home mechanisms work very well to a certain extent if there is regular money coming in, but it doesn’t work as well when so many are living on the edge of poverty. Poverty maintains its deep grip. Many live on what they earn each day, and won’t eat if they can’t work. 

The pandemic has left many Ethiopians with the unenviable choice of either feeding their families or protecting them from COVID-19. The problem with approaches that do not take into account inequities is that these can end up limiting sustainable interventions. Evidently, more community engagement to develop culturally and contextually feasible health promotion activities is crucial in the fight against a disease such as COVID-19 and beyond. 

While infection control and mitigation strategies have uneven impacts across Ethiopian society, the COVID-19 pandemic is underlining the fragility of Ethiopia’s health system. Access to basic health services remains the exception rather than the norm. Access to health care is severely limited, especially in rural areas. The spread of COVID-19 in Ethiopia is as much the product of its fragile health system and social inequalities as it is about epidemic dynamics. 

The pandemic has created social panic, as contagious and dangerous as COVID-19 itself. As the sharp increase in infections is observed, worries ranging from the ability of strained healthcare systems to handle a severe outbreak, to the effect of the restrictions will have on those in the informal economy, play on people’s minds. Unless properly handled, the situation will create social unrest in the near future. COVID-19 is profoundly affecting people’s finances, with mental, physical and social health implications that will linger for years to come. As we anticipate the long-term social, economic and health effects of the pandemic, Ethiopia needs to address vulnerability and inequity to ensure communities rebound. 

The grand lesson? COVID-19 has presented the world with myriad opportunities for revising, rebuilding and renewing health systems. What we need now is a firm resolve and global action to rectify inequity. While it is hard to overhaul systems in the middle of a crisis, it is evident that health system strengthening in Ethiopia has to be a top priority. It is an unprecedented opportunity for the country to dig deeper into what really needs to be done, for the future health of Ethiopian society.

References

  1. Ethiopian public health Institute COVID-19 daily update (EPHI), www.ephi.gov.et May 17 2020.
  2. Ethiopian Ministry of Health COVID-19 daily update; www.moh.gov.et/ejcc/en, May 17 2020
  3. Africa Joint Continental Strategy for COVID-19 outbreak: AU, Africa CDC, 2020 
  4. WHO COVID-19, situational report, 1-3  www.who.int/emergencies/diseases/novel-coronavirus-may 8, 2020/situation-reports

 

Shifting Trust in Outbreak Control

March 14, 2020

Sekou Kouyaté (MA) and Elysée Nouvet (PhD)

COVID-19 will not spare Africa. Many of the continent’s health systems are severely under-resourced. These are overwhelmed in the face of outbreaks. Political leaders and individuals responsible for the health of Africans have good cause to worry in the face of this new threat. But for the more general population, at least in Guinea, news of COVID-19 is provoking a different sort of reflection as well. 

Coverage of today’s global pandemic in this African country is a clear reminder of the 2013-16 Ebola Virus Disease (EVD) epidemic. On August 14, 2014, the Guinean government declared a state of public health emergency. Socio-economic consequences were immediate and dramatic. These included a reduction of flights coming into the country, the closure of businesses, the departure of European expatriates, and, with the consequent slow-down in economic activities and lay-offs in the mining sector. This was a period of undeniable hardship. Some did not accept this hardship as necessary. Many viewed the WHO guidelines for epidemic control that were implemented here as exaggerated and discriminatory:  “It’s because we’re Africans”. Some rejected the measures on the basis of those implementing these at the national and sub-national levels : representatives from the national government, public health authorities, the army responsible, foreign NGOs. In Guinea, as in many countries, trust in national and global authorities is consistently fragile. This is the result of several factors, including long-standing political and social divisions, and histories of colonial and outsider domination and exploitation. 

There is reason to be hopeful that trust of national public health infection control strategies will be different with COVID-19.  We have noticed in the last weeks that many of our Guinean colleagues and, in the case of the first author, co-citizens, are remarking on the outbreak control measures taken first by China, neighbouring countries of China, and now by an increasing number of countries in the face of the very real COVID-19 pandemic. What is underlined as notable is that these measures replicate those imposed in West Africa during Ebola: quarantine, reduced flights, limits on the movement of individuals out of affected areas, bans on public gatherings above certain numbers, closure of schools, universities, and places of worship. This is being interpreted and held up by many in the country as a powerful truth: such measures were never reserved for Africans. The dramatic response to COVID-19 by countries far from Africa – Italy, Canada, China – may do much more than curb this pandemic. Such measures, witnessed worldwide, may shift in significant and lasting ways narratives of distrust towards epidemic control measures where these exist.

As of March 12th, Guinea has confirmed its first COVID-19 case.  Adherence to infection surveillance and control measures will be key to what happens next. Hopefully, these measures will be recognized in Guinea and elsewhere as necessary, rather than unfair or duplicitous. The populations of countries like Guinea know what stands to be lost under such trying times. They are familiar with recommendations to limit the spread of the disease. It is more than a matter of telling the mice, “The cat is on its way, positions everyone!” Trust is key.  

 

Sekou Kouyate is a social anthropologist and project manager with the Humanitarian Health Ethics research group. He holds a Masters in anthropology and a Masters in development. He is based at the Laboratoire Socio-Anthropologique de la Guinée, in Conakry. 

Elysée Nouvet is an anthropologist and assistant professor in the School of Health Studies at the University of Western Ontario. She is a member of the Humanitarian Health Ethics Research Group, and an advisor to the World Health Organization Social Sciences Research Working group (good participatory practices) for COVID-19.

References:

  1. Wilkinson A, Leach M (2014). Briefing: Ebola-myths, realities, and structural violence. African Affairs 114(454): 136-148. https://doi.org/10.1093/afraf/adu080. Beyond Guinea:
  2. Blair RA et al. 2017. Public health and public trust: Survey evidence from the Ebola Virus Disease epidemic in Liberia. Social Science and Medicine 172: 89-97. https://doi.org/10.1016/j.socscimed.2016.11.016.
  3. Vinck P, et al. 2019. Institutional trust and misinformation in the response to the 2018-19 Ebola outbreak in North Kivu, DR Congo: a population-based survey. DOI: https://doi.org/10.1016/S1473-3099(19)30063-5

Colonial suspicions and hollow partnerships: one African research assistant’s failure to obtain a visa for a research seminar

By: Sekou Kouyaté

“As a member of the Humanitarian Health Ethics Research Group (HHERG), your presence is requested at a Dissemination and Workshop Event in Geneva, Switzerland hosted by CERAH (Centre d’enseignement et de recherche en action humanitaire de Genève – Geneva Centre for Teaching and Research in Humanitarian Action) from 23 September to 28 September 2018…

When I received this letter on July 9th, 2018, I was overcome with joy and hope. First, joy: for the feeling that I will become known by several colleagues I had corresponded with for over a year, and never met, and have the opportunity for them to hear me share my thoughts first-hand. Hope:  to meet international researchers in a renowned city. I immediately agreed because, as an African research assistant, the opportunity to participate in a workshop in Europe that focuses on public health research which affects thousands of Africans is rare and therefore impossible to refuse.

The first step for this trip to Europe, I quickly learnt, posed an immediate challenge. I was to obtain a visa at the Swiss embassy located not in my home country (Guinea), as there was no such embassy in Guinea, but in Ivory Coast. Travelling there was costly. My economic limitations made me begin to lose hope, as travelling there overland would take days, and a plane ticket would cost 300 USD. The visa itself would cost 60 USD. Luckily, these financial concerns were short-lived. As soon as my Canadian supervisor and professor, Elysée Nouvet, heard that I needed to travel out of country for my application, she assured me all costs of this process would be covered by the project, and sent me the funds. I was off to Abidjan.

The submission of the application files, and the discussions that followed did not allow me to expect a departure to Europe. Neither my commitment to return to Africa after the workshop nor the invitation letters from CERAH and HHE, and the authenticity of my own files were sufficient or reassured the Swiss Embassy to grant me the visa. I was granted an interview at the embassy in Abidjan. During interview with more than one official, I was told that I seemed honest enough, but inevitably as a young African (I was 40 at the time), I essentially posed a risk of illegal migration. It seemed impossible, statistically and socially, to the officials, that I would return to Guinea if I made it to Europe. I was stunned, and frankly offended, that it was assumed no African would choose to stay in Africa if given access to Switzerland. I entreated my interlocutors with as many details of my commitments in Guinea. My father had been a diplomat, and I knew the situation was delicate and not in my favor. I learnt that my lack of PhD seemed to evoke distrust in and of itself: how could a socio-anthropologist without a PhD (from Africa) have enough to contribute to a workshop to merit his invitation to such an event? In the end, the interview lasted less than an hour. I felt devalued and judged. I felt I was being seen as a potential criminal and liar, which was like being called a criminal and liar. I am a deeply religious man, and my word was my honor, but this meant nothing. I showed them proof of dependents in Guinea and two small children, as well as research positions that were contingent on my ability to conduct interviews and analysis in Guinea: this was insufficient.  

From the Ivory Coast, grief, shame, and disappointment filled my heart and my head. These combined to create in me a feeling of profound rejection. I did not answer my phone for several days afterwards as I processed what had happened. This failure to obtain a visa was not only a notification of non-participation in the workshop. It was confirmation of the existence of unfair assumptions about the inherent appeal of moving to Europe for all Africans, and the bias of visitor visa granting based in colonial thinking and policy.  It was then that I lost all hope that the symbolic partnership would be transformed into an authentic partnership between researchers from the South and the North.

I write this short piece, because I think it is worthwhile to record. I aim to share my experience with all the decision-makers in health research, in humanities and policies, so that processes for visa applications and approvals for researchers from the south be rethought. Colleagues from the north come to Africa with ease, and with relatively limited worry over visa. Current policies strike me as unfair. They are also extremely costly, stressful, and even depressing. If we are serious about decolonizing research, there has to be more support for the mobility of African researchers to partake in international events where their contributions will be discussed. It is time to replace rhetoric. It is no longer acceptable for Africans to be on the receiving side of lessons from non-Africans. We are not just part of research to color the soup. 

During seminars and workshops in Europe, the consideration of the perception and experience of African researchers beyond Skype is an important element in the re-foundation of this cooperation. In the relationship between southern researchers and colleagues from the European and North American continents, it should be mentioned that the only initiative that can achieve sustainability is the one which facilitates the free movement of researchers.  

It is regrettable to consider that in the 21st century, the remnants of colonization are still visibly persistent in health research, while security, international trade and politics have been able to repaint the board. Nowadays, political advisers, diplomats, and security experts are no longer worried about their status (beginner, intern and senior) for obtaining visas to travel to Europe or America.

In the context of public health, Africa is considered a research site on diseases (infectious, non-infectious, neglected, experimental studies…). For a better understanding and consideration of the experts’ recommendations to policy makers and financial partners, it is necessary for Africans to participate in disseminations and to be given a voice in explaining the perceptions, reactions and representations of diseases. After all, the idea of the principle of justice is one of the pillars of health research ethics.

 

Ethical challenges in providing pediatric medical care in humanitarian contexts 

From the Field

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Ethical challenges in providing pediatric medical care in humanitarian contexts

by Rachel Yantzi

Many humanitarian aid organizations prioritize healthcare interventions for children under five years old. This is due to their increased vulnerability, the high mortality rates in this age group, and because many childhood illnesses are easily treated. Providing medical care to children in the context of a humanitarian crisis brings with it a number of ethical challenges. Some are unique to pediatrics and unique to humanitarian contexts, while others are very familiar to healthcare providers who tend to work in non-crisis settings. During the nine months that I worked as a nurse in the Central African Republic (CAR), I encountered many ethical challenges, some that I anticipated and others that were completely unexpected.

My primary role in CAR was as nurse supervisor at a large referral hospital in a community recovering from years of civil war. The overwhelming ethical challenge we faced in CAR was the reality that many of the children who died in our hospital would have almost certainly survived had they been in Canada. As a pediatric ICU nurse, I am used to having all manner of modern technology at my fingertips. I remember watching a little three-year old boy with pneumonia struggling to breathe for hours. All he needed was BiPAP, or possibly to be placed on a ventilator for a couple of days and he likely would have been fine. Instead, there was little we could do as he struggled for air and eventually succumbed to a simple infection. It was incredibly difficult to see how easily a child could be lost in CAR. In Canada, a huge team of nurses, doctors, specialists, as well as state of the art technology and medications would be summoned to save such a child’s life. The discrepancy was hard to stomach.

From Eh to Z(ambia) – Reflections of Canadian’s First Time in the Field

Photo by Gautham Krishnaraj in Kapiri Mposhi, Zambia


Gautham Krishnaraj is a 2017–2018 Aga Khan Foundation Canada International Youth Fellow, 2016–2017 RBC Students Leading Change Scholar, and recent MSc Global Health Graduate (McMaster University). He currently resides in Mombasa, Kenya where he is working with the Madrasa Early Childhood Program, an Aga Khan Development Network Initiative.


There’s something special about the “Z” countries. Often overlooked despite tremendous sights for tourists and rich potential for cultural exchange, they are unique places that not everyone sets out to see. Zambia was an unexpected destination (with a layover in Zimbabwe, but I’m not quite crossing that off my list) during my eight month journey as an Aga Khan Foundation Canada (AKFC) International Youth Fellow, working with the Madrasa Early Childhood Program – Kenya (MECP-K). I am here to provide documentation and reporting support while two MECP-K colleagues are conducting the final support visit in a Care for Childhood Development (CCD) consultancy project with the Luapula and Firelight Foundations. Our work centres around teaching new caregivers (with children 0-3 years old) the importance of play, touch, and stimulation in the critical early years of life. We do so through community based CCD Counsellors, who have been trained in CCD and have engaged their local communities over the past year.

Over the past two weeks, we have observed and mentored our CCD Counsellors interacting with caregivers in Lusaka, Kitwe & Kabwe, as well as more rural communities in Ndola, Rufansa, and Kapiri Mposhi. Covering three provinces and hundreds of kilometers, I can attest to the fact that Zambia is very much, as our local partners have noted, a country under construction. Crimson sunsets are dazzling through the copper dust of the daily grind. It is a beautiful place to have my first true “field experience” of conducting research, although it has not been without its challenges.

On Aid

This is an internal ethical dilemma that long predates my arrival in the field. My aspirations are, primarily, humanitarian. I believe that humanitarian health care is the bleeding edge of the aid sector, engaging when local systems are completely overwhelmed by a disaster; man-made or natural. It feels somewhat easier to justify the thousands of dollars spent on humanitarians’ travel, insurance, prophylaxis, R&R, lodging etc., when you know that the local providers are acutely in need of immediate external support.While I recognize and grapple with the challenges of this short-term dialogue of urgency, I struggle far more with the challenges that arise in the context of International Development. Many large organizations, even those starting with the good intentions of building sustainable programs, inevitably fill roles that make it impossible to leave. But eventually they must. Vacuums follow. While I am certain that these questions have have been raised countless times prior, and will be raised countless times to come, it begs the question of a better alternative. I remember reading once that Aid is a sector we all wish didn’t exist, because it recognizes our collective failure to create an equitous global society. Can we do more than wish? How do we contribute without feeling/being complicit?

On Breastfeeding

My role here of documenting feedback on the CCD program involves conducting video recorded interviews, and taking plenty of photos. I’ll discuss consent shortly, but every caregiver and counselor signed consent forms before I pulled out my camera. One challenge I did not expect was that during the vast majority of interviews, with the camera clearly visible and me indicating that I had started recording, many  women start to breastfeed. I fully support and believe in the importance of de-stigmatizing and normalizing breastfeeding, as it is a most natural part of life. However, all but one of the participants were interviewed were young (16-21 year old) mothers, so using video footage that very clearly shows the whole breast introduces some problems. Am I complicit in the stigmatization of breastfeeding by not using that footage, especially as breastfeeding is a critically important aspect of care for Early Childhood Development? The legal age of consent here is 16, but what happens if the reporting video I will make is circulated elsewhere in the larger Aga Khan Development Network (AKDN)?

On Communicating Consent

Finally, and most critically, few of the rural caregivers had a strong grasp of English. Despite the consistent presence of a translator, and despite all of the CCD Counsellors speaking English fluently, one cannot help but wonder how much is lost in translation. This is particularly important when considering consent. Explaining the purpose and/or potential applications of research can be difficult even in a common language; add in translation and the situation is rife with chances of miscommunication. I have never felt entirely sure that the participant understood why three people had come all the way from Kenya “just to see how they play with their baby”. Indeed, the mere fact that we had come from afar may pressure the participant’s perceived ability to decline participation, further exacerbated by a potential sense of obligation based on existing relationships with the CCD Counsellors. It is hard enough to rapidly build rapport and comfort between researcher and participant in English, and immeasurably more so in a few scattered words of Bemba.

While it’s not possible to fully address ethical challenges A-Z, I did my best to keep my camera stowed until the forms were signed, to sit on the ground with the participants, and to capture them in their best light. Under the brilliant Zambian sun, the latter wasn’t hard at all.

The views expressed here are entirely those of the author, and do not represent the views or opinions of the Humanitarian Health Ethics Network, Aga Khan Development Network, Aga Khan Foundation Canada, Madrasa Early Childhood Program Kenya,

 

Post-Research Ethics Analysis (PREA): Researching Ethics in Humanitarian Research

OMathuna-Donal-2013-1.jpgArticle 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.

Details about the PREA team and partner research organizations are available on our project website at http://www.preaportal.org. This portal will eventually allow researchers to post examples of ethical challenges they have faced, and ways they have developed to address them in a humanitarian context. To get in contact with us, you can email info@preaportal.org, or follow us on Twitter @Ethics_Analysis or Facebook https://www.facebook.com/EthicsAnalysis/.   

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. 

From Boston to Nepal: How to treat suffering without medical resources

One never gets used to the idea that there is nothing one can do.

–Connie Willis, The Doomsday Book, 1992

by Annekathryn Goodman, MD

I was deployed to Nepal for three weeks after the April 2015 Earthquake as part of a first responder mobile medical team of the International Medical Corps. My 12-person team was helicoptered into remote, inaccessible mountain villages that had been devastated by the earthquake. We would set up a clinic, treat acute injuries, collect data on impending infectious disease epidemics, and triage severely injured earthquake victims for helicopter evacuation to Kathmandu. It was during this journey that I was confronted with the dilemmas of how to care for actively dying people when resources were not available.

The challenges after a natural disaster are complex and nuanced.  There is a loss of civic infrastructure. Scarce resources include among others: medications, health facilities, and providers. There is also the terrible loss of family, food scarcity, and a lack of water and electricity.

The goals of first responders shift to acute care and includes saving lives, stabilizing injuries, and offering definitive therapy when possible. When a victim cannot survive, palliation of symptoms would be ideal if it is possible to do so. There is the tough business of triaging patients in this setting by whether or not they can be saved. The categories of triage range from immediate (immediate intervention will save the life), delayed (the injuries are not life threatening and can be treated later), minimal, and expectant. The expectant category is reserved for patients with devastating injuries where they will not survive or where the resources to help them are greater than what is available and even with the best care, their chance of pulling through is minimal.

In contrast to a disaster-restricted setting, tremendous expense is routinely spent for ill cancer patients in the hopes of giving them an extra 3 to 6 months of life. In addition, early palliative care intervention in a non-disaster setting hopes to improve symptoms, relieve suffering, and help patients with advanced and incurable cancers to transition in a gentler and more gradual way towards the inevitable end of their lives. During a mass casualty event, palliative care services directly compete with definitive or life-saving care. This leads to an altered standard of palliative care where pain-control and sedation is the main goal.

Durbarsquare_after_earthquake_3
Damage in the Basantpur Durbar Square. Photo from Wikipedia.

Nepal, a country of 31.5 million people where the average age is 22 years is an agrarian society and among the poorest countries in the world. Pre-earthquake, prescribing narcotics was illegal and palliative care was not a widely known medical concept. On 25 April 2015, a 7.8 earthquake rocked the country. A second 6.8 earthquake followed on 12 May. These earthquakes and the subsequent hundreds of severe aftershocks led to deaths, landslides, displacement, homelessness, and crop failure and food insecurity.

In this setting, my mobile medical unit treated over 2000 people during our three-week rotation. There were many cases of respiratory illness, dehydration, diarrheal diseases, pain, rashes, urinary symptoms, lacerations, fractures, pregnancy and gender based violence.

It was during one chaotic day that I met a 55-year-old gentleman whom I had to triage to the expectant category. I was in the middle of suturing a laceration when looking up I saw a group of people carrying a man down the mountainside in a large grain basket. Two years before, he had been treated in Kathmandu for bladder cancer and had undergone a pelvic exenteration, radiation, and chemotherapy. His family wanted him evacuated to Kathmandu. On examination there were multiple sites of tumor growing through the abdominal wall and he had developed a high output enterocutaneous fistula. His clothes were saturated by the fistulous output, and he was in obvious, tremendous pain. His family had been walking for two days to get to us.

It was an awful moment. I gently tried to explain through an interpreter that he probably would not last more than a few days and we could not send him to Kathmandu. His son and I bathed him and wrapped him in some chux pads that we had on hand. The family was incredulous and angry.

There are guidelines for the ethical approach to allocation of scarce resources and triage. The concepts to consider include accountability, transparency, consistency, and proportionality. There is the issue of fairness—to be inherently just to all people. And there is the public health concept of the duty to obtain the best outcome for the greatest number of patients with available resources. These issues confronted me with this poor gentleman and his family. I could not even offer adequate palliation of his and his family’s suffering.

I will always remember this patient and I bring back to our resource rich country some important concepts to consider in our care of cancer patients. The inability to give good care and alleviate suffering leads to moral distress among the providers. There is a balance of care and we must be thoughtful with treatment choices. On the one hand, we can cause harm with overly aggressive care that may be futile. In addition, beyond the individual patient, the inappropriate use of health care resources harms others who may not be able to receive care. However, the inability to at least manage symptoms is unacceptable.

AK_Nepal
Caption: “I am inspired by how children cope in disasters,
they are so resilient:
Laughing, figuring out how to make play out of the rubble and destruction.
So in that scene, I pulled out my notebook and asked them to draw pictures for me.
They loved it.
Got lots of drawings.
And then they loved looking at each other’s drawings.
There was lots of feedback and analysis all in Nepali.
And they loved leaning over and poking at me:
Lots of dirty fingers in my ears.”

There is a movement to develop a crisis standard of care during disasters. These standards are also worthy of consideration in a non-disaster situation. Critical resources go to those who will benefit the most. We must prevent hoarding and overuse of limited resources. Limited resources must be conserved so more people can get the care they need. We must minimize discrimination against vulnerable groups who cannot advocate for themselves such as the poor, the minorities, the elderly, and immigrants.

Ultimately, regardless of the context we must maintain the basic human values of compassion, empathy, and respect for the dignity of others and to maintain professional codes of conduct.

Dr. Annekathryn Goodman is a Professor of Obstetrics, Gynecology and Reproductive Biology at Harvard Medical School and practices as a gynecologic oncologist at Massachusetts General Hospital in Boston. She is a member of the national Trauma and Critical Care Team  a branch of the US department of Health and Human Services and has deployed to various international disasters including Bam, Iran 2004, Banda Aceh 2005, Haiti 2010, the Philippines 2014, and Nepal 2015.  Since 2008, she has been consulting in Bangladesh on cervical cancer prevention and the development of medical infrastructure to care for women with gynecologic cancers. 

Of Textbooks and Well-Buried Bones – Sonya de Laat

Of Textbooks and Well-Buried Bones:

Humanitarianism, human rights and the unintended settlers of the twenty-first century

(Or, The twenty-first century’s unintended settlers and access to community)

by Sonya de Laat

Featured Image: Hannah Mintek

 

At the end of March, McMaster University happened to host, on successive days in separate events, two speakers presenting talks on experiences of settlement by people recently displaced by conflict or forced expulsion. The first talk, by Elizabeth Dunn, was entitled “Displaced people, humanitarian aid and the secret lives of corpses,” and was hosted by the Department of Anthropology. The second talk, by Keith Watenpaugh, was entitled “Refugees, human rights and the Syrian War” and was part of the Hannah History of Medicine and Medical Humanities Speaker Series. Both of these separate but interrelated talks dispiritingly reinforced the growing reality that displacement is fast becoming the new normal. While Syria presents what Watenpaugh rightly characterises as the defining humanitarian crisis of this generation, the refugee crisis created by the protracted violence in that country is but a small part of the massive forced displacement of people around the globe. Recent figures released by the UN put the numbers of forcible relocated people to 65 million, twenty million of whom are officially classified as refugees (UNHRC). This is a three-fold increase in just twenty years (Dunn). Both talks made the case, in their own ways, that in this world of flux, uprootedness, and displacement, Hannah Arendt’s claims made in 1949 of the need to agree on and protect the fundamental human right to have right—as a member of a community with associated rights to political participation in that community—has more relevance today than at any other point in history.