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Palliative Health Care in Jordan for Syrian Refugees – An HHE Report

 

Palliative Health Care in Jordan for Syrian Refugees

McMaster University’s Global Health student, Madeline McDonald completed this report within the Masters in Global Health program, under the supervision of Dr. Elysée Nouvet.

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.

The focus of this paper was to examine factors affecting provision and accessibility of palliative care in particular for Syrian refugees.

The full report is available here.

PHOTOGRAPH: Syrian refugees seek medical attention at the Jordan Health Aid Society Clinic in the Zaatari refugee camp, located 10km east of Mafra, Jordan on June 04, 2014.
Photo © Dominic Chavez/World Bank   Photo ID: Jordan_EDIT_005

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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. 

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Call now open for GFBR 2017

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:

  1. CALL FOR CASE STUDIES
  2. CALL FOR PROPOSALS ON GUIDANCE AND POLICY ISSUES
  3. CALL FOR PARTICIPANTS

See the following link for more details and information:

http://www.gfbr.global/news/call-now-open-2017-gfbr/

If you have any questions about this call please email gfbr@wellcome.ac.uk.

All applications should be sent to gfbr@wellcome.ac.uk 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.

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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, ten 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.

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MARCH 31 CFP: Chapter contributions for volume on Humanitarian Action and Ethics

Humanitarian actors are now pressed to respond to increasingly complex crises in diverse and difficult contexts. Historically subject to multiple and often divergent interpretations, humanitarian values are now further challenged by changing conflict dynamics, globalization and its effect on shifting power relations, and a more sustained criticism of established forms of humanitarian response. Though under appreciated, ethical reflection offers an opportunity for deeper evaluation of humanitarian action, and its impact on those who endeavour to alleviate suffering and protect human dignity during, and in the aftermath of, humanitarian crises. This edited volume seeks to bring together academics and practitioners engaged in all aspects of both direct humanitarian response and scholarly humanitarian reflection, with the aim of offering a nuanced insight into the complexity of the humanitarian experience in a diversity of crisis contexts. As such, we welcome contributions related to any aspect of humanitarian action and ethics, with a particular interest in practitioner perspectives.

Call for Papers:

The volume is due to be submitted in its entirety by the 1st of August 2017. To be considered for inclusion in this volume, please kindly submit a 200-word abstract by the 31st of March to a.ahmad@ucl.ac.uk

Dr Ayesha Ahmad and Dr James Smith

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Not to be missed! Two incredible upcoming talks hosted by McMaster History of Medicine

Title:  “The Drowned, the Saved, and the Forgotten: Genocide Survivors and the Foundations of Modern Humanitarianism” 

Speaker:   Dr. Keith Watenpaugh, Professor and Director, Human Rights Studies Program, Co-Director University of California Human Rights Collaboration, Department of Religious Studies, University of California at Davis

The talk will take place:

  • Wednesday, March 22, 2017
  • 3:00pm to 5:00pm
  • Health Sciences Building/McMaster Medical Centre (HSC) 1A6

Abstract:  All humanitarian emergencies are not created equal, or at least not constructed in the humanitarian imagination equally.  Where they happen, who is affected, the judged “worthiness” of victims and the quality of need are among the several conditions that transform how a problem of humanity becomes a problem for humanity, like genocide.  Examining the international humanitarian response to the genocide of the Ottoman Armenians (1915-1922), he argues that modern humanitarianism and genocide have a complex and intertwined history that has particular relevance to concepts like humanitarian neutrality, humanitarian governance and the role of justice in relief and what would be called now, rights-based development.

Biography:  Professor Keith David Watenpaugh studies the history, theory and practice of human rights and humanitarianism and directs the UC Davis Human Rights Studies Program. He is author of Bread From Stones: The Middle East and the Making of Modern Humanitarianism (California, 2015) and Being Modern in the Middle East (Princeton, 2006). His work has been translated into French, German, Armenian, Arabic, Turkish and Persian.

 

 

Title:  “Refugees, Human Rights, and the Syrian War” 

Speaker:   Dr. Keith Watenpaugh, Professor and Director, Human Rights Studies Program, Co-Director University of California Human Rights Collaboration, Department of Religious Studies, University of California at Davis

The talk will take place:

  • Wednesday, March 22, 2017
  • 7:30pm to 9:00pm
  • Health Sciences Building/McMaster Medical Centre (HSC) 1A1

Abstract:  With several years of fieldwork in Syria and the Middle East, Dr. Watenpaugh will trace a history of the conflict in Syria and an understanding of the situation of Syrian refugees.  He has worked with Syrian refugees in camps in Turkey and will provide some insights for health professionals working with these populations.  He will explore the legal dilemmas of global humanitarianism and will address the recent ban on Muslims and refugees in the United States.

These two talks are co-sponsored by the following:

Department of History , Orphan Sponsorship Program, McMaster Muslim Student Association,  Department of Health, Aging, Society, Humanitarian Healthcare Network, Department of Religious Studies

The History of Medicine and Medical Humanities Speaker Series is made possible by an endowment from Associated Medical Services (AMS).

For more information; please contact the Hannah Chair Dr. Ellen Amster at:  amstere@mcmaster.ca.