Author: Humanitarian Health Ethics Research Network
Humanitarian Healthcare Ethics is a place to find practical and educational material for humanitarian healthcare workers as well as students and scholars of humanitarian healthcare ethics. The website developed out of empirical research on the ethical dilemmas faced by humanitarian healthcare professionals working in humanitarian crises, disasters or areas of extreme poverty.
Dr. Olive Wahoush has been an advocate and researcher of refugee health care since 1987. She came to this topic first through teaching undergraduate nurses maternal newborn health in a refugee camp in Jordan in the 1987 and later through hospital administration and volunteer roles in Pakistan and Canada. Olive trained as a nurse in Northern Ireland during the 1970s a period of civil conflict, during that time she was exposed to ethical issues around triage, resource allocation, discrimination, and direct patient care. Later during her time as a nurse educator and leader in the Middle East and Pakistan she became interested in global health issues when she was exposed to situations where populations were on the move, capacity development was essential in health service programs and in health professional education.
Olive emigrated to Canada in 1992 and continued to build on her interests in maternal and child health, community engagement and outreach to include vulnerable and underserved groups in Hamilton and Toronto. She completed her PhD at UofT and her doctoral research examined health care access and experiences of refugee and refugee claimant families in Hamilton. Through her roles at the School of Nursing at McMaster University, Olive was instrumental is leading and promoting research with refugees, newcomers and other underserved populations. Many undergraduate and graduate students now complete experiential learning placements in Hamilton, Toronto and Internationally with agencies serving refugees and other underserved groups.
When it comes to health for refugees as they work to settle in a new environment, Olive sees equitable outcomes as a fundamental ethical concern, it is not enough to focus on access, some people need more help than others to get to the same outcome. For example newcomers such as refugees need time, language development and information about their adopted country and the new systems they need to use to live well. When asked about what the main priorities are for refugee healthcare abroad, Olive identified respect and recognition of refugees’ situations and conditions [or, refugeedom] as a priority area for researchers concerned with ethical dimensions of care or of research. Although there are common concerns across refugee populations that enable rapid response programming, there are also significant differences related to the circumstances such as war or climate change and history affecting populations, settings and individuals.
Recent research Olive has been involved in or leading include studies focused on reproductive health, health and resettlement of refugee and refugee like families in Canada and exploring the selection process for refugees in transit countries like Jordan. She has recently become a co-investigator on the HHE project exploring ethical aspects related to palliative care in humanitarian crisis situations. She has made invaluable connections with practitioners, academics and researchers on the ground in Jordan in order to learn about the provision of palliative care in refugee contexts (in camps and in urban settings) in that country.
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.
Thank you to the European Association for Palliative Care for including our research, including the invitation for participation in our research survey, as part of their new series about palliative care in the context of humanitarian crisis. Access the blog post here.
The Hashemite Kingdom of Jordan shares its northern border with the Syrian Arab Republic, and has been one of the main receiving countries of fleeing refugees since the beginning of the Syrian conflict in 2011. Currently over 650,000 Syrian refugees live in Jordan, most outside of refugee camps (Ministry of Planning and International Cooperation, 2015).
Refugees face many significant health concerns, both acute and chronic. While some are related to the conflict such as injuries and infections, non-communicable diseases claim the most Syrian lives (UNHCR, 2016b). Refugees receive care within the extensive Jordanian health system, which includes public, private and NGO facilities and services. The influx of refugees has put increased strain on both medical and human resources within the Ministry of Health in Jordan.
This paper examined factors affecting provision and accessibility of palliative care Syrian refugees. Palliative care focuses on providing relief from symptoms, pain and stress of a serious illness for patients and families (Razzak & Smith, 2014). Formal palliative care services are only available in the capital city of Amman: one in-patient palliative care unit and one home-based care service (Al Qadire et al., 2014). Jordan has no national policies on palliative care, nor palliative care education for health care providers.
Factors influencing provision and accessibility of palliative care services for refugees fall into three distinct categories:
Financial factors include costs to the patients and families for registration documents, user fees, medications and transportation. The health care system also incurred sizeable costs from providing care for the incoming refugees in addition to citizens.
Systemic and organizational factors complicate access to care through rigorous identification and registration requirements for refugees. Health care services are not evenly dispersed, nor are they equally accessible to all. Strict regulations surrounding the distribution and use of opioids restrict use for pain management.
Important cultural and ideological factors include a tradition of non-disclosure about poor prognosis, and the role of the family unit in decision-making and caring for patients. Many Muslims have strong religious beliefs about illness and death, which are reinforced by cultural norms. Finally, negative perceptions, misconceptions, and lack of awareness about palliative care, pain management and the use of opioids play an important role.
In conclusion, some future directions for research and policy are proposed for the national and international levels. These will support improvement and expansion of palliative care services in Jordan as a resource- and cost-effective way to provide better care for refugees and citizens alike.
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.
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.
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.
The Global Forum on Bioethics in Research will hold a two-day meeting in Bangkok, Thailand, on 28-29 November 2017 on the theme of:“the ethics of alternative clinical trial designs and methods in low- and middle- income country research”.
The CALL IS NOW OPEN for:
CALL FOR CASE STUDIES
CALL FOR PROPOSALS ON GUIDANCE AND POLICY ISSUES
CALL FOR PARTICIPANTS
See the following link for more details and information:
All applications should be sent to email@example.com by 21.00 BST on Tuesday 30 May 2017, in English. Please specify in the subject line whether you are applying to attend, present a case study or present on guidance or a policy issue. Applications received after the deadline will not be considered.