The latest edition of the HumEthNet newsletter is now available.
Theme: Moral dimensions of paediatric healthcare in humanitarian crises
– Lost Population: Rohingya children
– Ethical reflection in a child malnutrition program
– Film review, recent publications, and more…
Reflections editorial policy and subscriptions.
Sonya de Laat & Jhalok Talukdar
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Humanitarian Health Ethics Research Group
McMaster University, 1280 Main St. W., CRL-202
Hamilton, On, Canada L8S 4K1
Bending the Arc
Director/Producer: Kief Davidson
Director/Editor: Pedro Kos
2017, 2 hrs 30 mins
Available at: http://bendingthearcfilm.com
“Bending the Arc” tells the story of Paul Farmer, his colleagues at Partners in Health, and how a tiny NGO in rural Haiti came to push the boundaries of what was possible in global health.
The film is based on the book “Mountains Beyond Mountains” by Tracy Kidder. It offers a chronological history of Partners in Health and highlights how Farmer and his colleagues approached healthcare for the poor from a unique philosophical position.
In the film, Farmer offers many critiques of the way traditional development work and global health are framed saying, “appropriate technology just means shit for poor people and good things for rich people.” He continually pushes viewers to challenge assumptions about healthcare for the poor. The film also presents the claim that neo-liberalism and World Bank imposed austerity programs that have been forced upon low-resource countries have devastated the social and health infrastructure of these countries. At one point, Farmer expresses frustration with the often-quoted platitude, “it is better to teach a man to fish” because, as he says, “their ships are sunk”! He seems to be saying, we cannot solve the healthcare problems of rural Haiti by training healthcare workers or increasing health literacy when the healthcare system as a whole is devastated by austerity programs.
From the Field
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.
In Focus: Member Profile
Joan Marston is based in South Africa and comes from a background in Nursing and Social Science. She is the Global Ambassador of the International Children’s Palliative Care Network (ICPCN) having served as its Chief Executive. She was one of the founding members of the original ICPCN Steering Committee in 2005. More recently, she has also been part of the group that developed the new Guidelines for Persisting Pain in Children, as well as Guidelines for Disclosure in Children for the World Health Organization.
With twenty-nineyears of experience in palliative care for children, she has provided this specialized care in the roles as Executive Director of Bloemfontein Hospice and as founder of the Sunflower Children’s Hospice in 1998 in Bloemfontein, South Africa, alongside her work in a regional network for life-limited children, the St. Nicholas Bana Pele Network in 2009. As the national paediatric development manager for the Hospice Palliative Care Association of South Africa from 2007 to 2010, Joan and her team developed a strategy for a national network of services, promoting the considerable growth of the number of paediatric palliative care services for children in South Africa. During that time she was the Project Manager for a programme to develop children’s palliative care Beacon centres in Tanzania, Uganda and South Africa.
A committed advocate for children’s right to palliative care and pain relief, Joan has also worked towardsresponsive palliative care for children and adultsduring acute and protracted humanitarian crises. When asked about some of the ethical dilemmas humanitarian healthcare workers might face when confronting terminally ill or injured children, she said, these include prioritising of scare resources such as personnel, time and medicines when saving lives is critical, especially when palliative care is seen as non-essential. Withholding or withdrawing treatment that could prolong life, spending time with a dying child when personnel are needed to deal with acute emergencies, and developing/using comforting child-relevant communication are additional ethical issues. Practically, lack of training in and understanding of palliative care and pain relief in children by humanitarian first responders—as few have paediatric formations—and a lack of palliative care workers in humanitarian situations is a main contributing factor to the development of ethical dilemmas. Humanitarian healthcare workers may also find themselves overwhelmed by the number of adults needing care, or by the reality that adults may leave an ill or injured child due to their own inability to face the issue of children dying. Undoubtedly tragic choices along the lines of those listed will need to be made in harrowing circumstances, but collaboratively making those decisions is part of the work Joan Marston and the larger networks she is involved in continue to work on in order to mitigate and minimize their difficulty.
Joan Marston is an active member of the Anglican Church and a Lay Minister in the Cathedral in Bloemfontein. She is also an Honorary Lay Canon of Blackburn Cathedral in Lancashire, England. She can be reached at email@example.com
[Sources: http://www.icpcn.org/joan-marston/, and personal communication]
by Jhalok Talukdar
Lost generation: The case of Rohingya children
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.
See HumEthNet members Dónal O’Mathúna, Lisa Schwartz and Matthew Hunt discuss the important role ethics plays throughout the research cycle and within public health research during a humanitarian crisis.
About the R2HC research ethics tool.