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HumEthNet Reflections
Volume 4 Number 2                                       Summer 2016
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Children have walked for weeks across the desert to get to Dadaab, and many perish on the way. Others have died shortly after arrival. On the edge of the camp, a young girl stands amid the freshly made graves of 70 children, many of whom died of malnutrition. Photo: Andy Hall/Oxfam. (Short reflection on this photograph.)

When a cure is no longer possible

Palliative care is explicitly recognised as an essential part of the human right to health (WHO 2015). Its provision is consistent with the agreed upon humanitarian principle of promoting and protecting life with dignity, and consistent with the humanitarian principle of alleviating suffering. And yet, to the best of our knowledge, there are no expressed models, guidelines, or training within humanitarian healthcare organisations drawing attention to the value of supportive care, or aimed specifically at preparing healthcare teams to provide high quality end of life care. Why not?

Palliative care is of increasing global concern. In Canada, public discussions over the past two years have been focused on the right of patients to request physician assistance in dying, but for such choices to function ethically they need to be supported by options for effective palliative and supportive interventions. However, as noted by Brett Sutton in his commentary in this issue, access to basic pain control that can transform the quality of life of patients with life-threatening illness remains a challenge in many contexts. The WHO has stated that only 14% of the 40 million people who need palliative care every year receive it (http://www.who.int/ncds/management/palliative-care/en/). It is unknown how access to palliative care may be further limited in unique emergencies, but given that emergencies can separate families and shatter already limited healthcare resources, this does seem a near certainty.

Over the last two years, and none the least in connection to the 2014-5 Ebola outbreak, the issue and limits of palliative care provision during humanitarian emergencies has become more pressing to many of us. There is a global swell of clinicians and decision-makers advocating for increased programmatic interventions of palliative treatment during complex humanitarian interventions (https://www.ehospice.com/ArticleView/tabid/10686/ArticleId/15577/language/en-GB/Default.aspx). This requires development of evidence supported policies and protocols that are designed to meet the needs of those whose deaths are inevitable after disaster or during conflicts; collaboration with families, communities and local care-givers to provide culturally supportive care; and preparation and resources for aid workers to provide this kind of care. This issue of HumEthNet Reflections intrudes on the silence1—or at least the very quiet space—around humanitarian healthcare professionals’ engagements with patients for whom cure is no longer possible. There is also a contribution by Sonya de Laat exploring the visual depictions of suffering in humanitarian settings more broadly, and draws our attention to history of significant human experience captured in images—but potentially at what costs.

We invite comment on these features, and contributions for a newly launched hhe study on ethics and palliative care funded by ELRHA’s r2hc programme. If you are involved in or have received palliative or supportive care treatment during humanitarian interventions we welcome your insights and hope you will consider becoming a participant in this study.
 
Thank you for reading,

Elysée Nouvet, PhD 

Co-Editor of Reflections,
Post-Doctoral Fellow in Humanitarian Health Care Ethics at McMaster University


Lisa Schwartz, PhD
Co-Lead of HumEthNet,
Arnold L. Johnson Chair in Health Care Ethics with the Faculty of Health Sciences at McMaster University

 

Reference:
http://www.irishtimes.com/culture/unthinkable-can-silence-be-used-to-fight-injustice-1.2558559
Also, explore this powerpoint on palliative care in disasters http://www.phe.gov/coi/Documents/Palliative%20Care%20Considerations%20in%20Disaster%20Situations.pdf
   

In Focus: 
Brett Sutton
Brett Sutton is Public Health Registrar at Burnet Institute in Melbourne, Australia. He currently works with the Department of Health and Human Services Victoria, the Macfarlane Burnet Institute for Medical Research and Public Health (Burnet Institute), and is an Adjunct Lecturer with James Cook University. He is a Fellow of the Royal Society for Public Health and the Australasian College of Tropical Medicine.
Read more
Commentary:
by Brett Sutton

When I was first introduced to palliative care as a medical student, it struck me as a rather mysterious medical specialty. Remarkable in its acceptance of death and dying, when all the rest of us were battling to save lives, almost as an end in itself. Doctors always out to ‘cheat death’, regardless of means and sometimes wilfully disregarding the suffering incurred along the way. Palliative care practitioners in stark contrast appeared to me to be amazingly resilient, with depths of compassion and a unique medical perspective. I still think that.

Read more
Humanitarian Visual Landscape 2015
by Sonya de Laat
Miserable images of the ravages of Ebola Virus Disease in West Africa (thankfully, on a downward trajectory by that point) were at the forefront of the humanitarian visual landscape of 2015. These pictures were swiftly overtaken in the spring (and for the bulk of the year) with heart wrenching images of the perilous journeys taken by (im)migrants en route to Europe. The vast majority of these images are undoubtedly shocking.
Read more

Two Projects Funded 


It is with great pleasure that we announce the awarding of two grants to founding members of HumEthNet.

The research projects include:
Isolation, quarantine and research in Ebola management: A comparative study of perceptions between communities, outbreak control teams and researchers

Aid when there is “nothing left to offer”: A study of ethics & palliative care during international humanitarian action

Both research projects are funded by Elrha’s Research for Health in Humanitarian Crises (R2HC) Programme. The R2HC programme aims to improve health outcomes by strengthening the evidence base for public health interventions in humanitarian crises. The R2HC programme is funded equally by the Wellcome Trust and DFID, with Elrha overseeing the programme’s execution and management.

Visit http://www.elrha.org/work/r2hc for more information about their funding programmes.

                                     

Global palliative care networks

Films on palliative care 

LIFE before death feature film. Mike Hill, Dir., 2012 
LIFE before death short films.
 The Pain Project.
http://www.treatthepain.org/videos.html 
LIFE Before Death is a multi-award winning documentary series that asks the fundamental question underpinning our mortality. This beautifully filmed journey takes us to 11 countries as we follow the remarkable health professionals battling the sweeping epidemic of pain that threatens to condemn one in every ten of us to an agonizing and shameful death. Through the eyes of patients and their families we discover the inherent humanity that empowers the best of us to care for those beyond cure. This is an intimate, hopeful and life-affirming story of living well and dying better, advocating for making the most of every moment in our life before death.


The ICPCN has a YouTube Channel with videos relating to paediatric palliative care. They also provide a list of other films and videos from around the world on children's palliative care, communication about end of life, and the right to pain relief.
http://www.icpcn.org/multimedia/youtube-videos/

New articles 

New books





The Experiment Must Continue: Medical Research and Ethics in East Africa, 1940–2014
by Melissa Graboyes
2015 | 0821421735


From the publisher, Ohio University Press:
The Experiment Must Continue is a beautifully articulated ethnographic history of medical experimentation in East Africa from 1940 through 2014. In it, Melissa Graboyes combines her training in public health and in history to treat her subject with the dual sensitivities of a medical ethicist and a fine historian. She breathes life into the fascinating histories of research on human subjects, elucidating the hopes of the interventionists and the experiences of the putative beneficiaries.
Historical case studies highlight failed attempts to eliminate tropical diseases, while modern examples delve into ongoing malaria and HIV/AIDS research. Collectively, these show how East Africans have perceived research differently than researchers do and that the active participation of subjects led to the creation of a hybrid ethical form.
By writing an ethnography of the past and a history of the present, Graboyes casts medical experimentation in a new light, and makes the resounding case that we must readjust our dominant ideas of consent, participation, and exploitation. With global implications, this lively book is as relevant for scholars as it is for anyone invested in the place of medicine in society.


International Responses to Mass Atrocities in Africa
Responsibility to Protect, and Palliate
by Kurt Mills
2015 | ISBN 978-0-8122-4737-4
From the publisher, University of Pennsylvania Press: 
Since the end of World War II and the founding of the United Nations, genocide, crimes against humanity and other war crimes—mass atrocities—have been explicitly illegal. When such crimes are committed, the international community has an obligation to respond: the human rights of the victims outweigh the sovereignty claims of states that engage in or allow such human rights violations. This obligation has come to be known as the responsibility to protect. Yet, parallel to this responsibility, two other related responsibilities have developed: to prosecute those responsible for the crimes, and to provide humanitarian relief to the victims—what the author calls the responsibility to palliate. Even though this rhetoric of protecting those in need is well used by the international community, its application in practice has been erratic at best.

The Battle for Algeria: Sovereignty, Health Care and Humanitarianism
by Jennifer Johnson
2015 | ISBN 978-0-8122-4771-8

From the publisher, University of Pennsylvania Press:
InThe Battle for Algeria Jennifer Johnson reinterprets one of the most violent wars of decolonization: the Algerian War (1954-1962). Johnson argues that the conflict was about who—France or the National Liberation Front (FLN)—would exercise sovereignty of Algeria. The fight between the two sides was not simply a military affair; it also involved diverse and competing claims about who was positioned to better care for the Algerian people's health and welfare.

Medical Humanitarianism: Ethnographies of practice
by Sharon Abramowitz and Catherine Panter-Brick, editors
2015 | ISBN 978-0-8122-4732-9
From the publisher, University of Pennsylvania Press:
Medical humanitarianism—medical and other health-related initiatives undertaken in conditions born of conflict, neglect, or disaster —has a prominent and growing presence in international development, global health, and human security interventions. Medical Humanitarianism: Ethnographies of Practice features twelve essays that fold back the curtains on the individual experiences, institutional practices, and cultural forces that shape humanitarian practice.

Power, Suffering, and the Struggle for Dignity: Human Rights Frameworks for Health and Why They Matter
by Alicia Ely Yamin
2015 | ISBN 978-0-8122-4774-9
From the publisher, University of Pennsylvania Press:
Directed at a diverse audience of students, legal and public health practitioners, and anyone interested in understanding what human rights-based approaches (HRBAs) to health and development mean and why they matter, Power, Suffering, and the Struggle for Dignity provides a solid foundation for comprehending what a human rights framework implies and the potential for social transformation it entails. Applying a human rights framework to health demands that we think about our own suffering and that of others, as well as the fundamental causes of that suffering. What is our agency as human subjects with rights and dignity, and what prevents us from acting in certain circumstances? What roles are played by others in decisions that affect our health? How do we determine whether what we may see as "natural" is actually the result of mutable, human policies and practices?
Upcoming events and CfPs
  • So You Think You want to be a Relief Worker?
    Organisation: RedR UK   Location: United Kingdom   Date: 30 July or 24 September 2016
    This one-day workshop is an essential introduction for anyone interested in a career in the humanitarian sector. You will hear first hand experiences from individuals who have been involved in humanitarianism, learn about the nature of humanitarian relief, and look at the skills you have to bring to the sector. You will also have the chance to go through the application process for the humanitarian sector, learning about where to apply, and what kind of skills are in demand. HR professionals from the humanitarian sector will help you adapt your CV and existing skills to match humanitarian language. The course will also advise you on further routes of study to inform your career as an aid worker.
    E-mail : training@redr.org.uk        Phone : +44 (0)20 7840 6000
  • Training of Trainers for the Humanitarian Sector
    Organisation: RedR UK      Location: United Kingdom Date: 05 to 09 September 2016
    It has been said that “good teachers produce good students.” It is equally true that good trainers produce good aid workers. By passing on their wisdom and experiences through effective training techniques, humanitarian aid workers can extend the impact of their work to future projects and generations. Trainers in the humanitarian sector ensure aid workers are equipped with the skills and knowledge they require to deliver successful humanitarian programmes. This five-day course combines theory and practice to help you understand the fundamentals of training and facilitation and develop competencies to aid you in becoming a more effective trainer.You will learn from experience, observation, and feedback in highly participatory activities. The skills you learn during the course will immediately be put into practice and developed as you plan and deliver your own short training sessions.   
    E-mail : training@redr.org.uk        Phone : +44 (0)20 7840 6000
  • Fordham University's Institute of Humanitarian Affairs offers a course on Ethics of Humanitarian Assistance. July 11-15.  Humanitarian aid professionals are confronted with ethical questions in every area of their work. This course explores these ethical questions, examines alternative ethical grounds for action, and provides humanitarian professionals with a framework for evaluating practical ethical issues that arise, especially through current and past case studies. http://www.fordham.edu/info/23470/courses/4302/ethics_of_humanitarian_assistance
  • Save the Dates – WADEM Congress on Disaster and Emergency Medicine 2017! The Congress will be WADEM’s 20th biennial meeting of global experts to exchange knowledge and best practices on disaster and emergency health. More than 800 health care professionals, researchers, and students from 63 countries participated in the last Congress in Cape Town, South Africa in 2015–and it is expected that more will be Toronto! https://wadem.org
  • Visit CERAH-Geneva Centre for Education and Research in Humanitarian Action for courses: http://www.cerahgeneve.ch/training/certificates/
Research opportunities
Learn more about  HumEthNet & the Humanitarian Health Ethics Research Group.
Reflections editorial policy and subscriptions.


Copyright © 2016, HumEthNet, Humanitarian Health Ethics Research Group. All rights reserved.
Commentary photo credit: CDC/ Amanda Mills

Reflections editors:
Sonya de Laat & Elysée Nouvet

Our email address is:
humethnet@gmail.com

Our mailing address is:
Humanitarian Health Ethics Research Group
McMaster University, 1280 Main St. W., CRL-202
Hamilton, On, Canada L8S 4K1

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Humanitarian Health Ethics Research Group · McMaster University · 1280 Main St. W., CRL-202 · Hamilton, On L8S 4K1 · Canada

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