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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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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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Palliative Care in Humanitarian Situations – is it achievable?

Palliative Care in Humanitarian Situations – is it achievable? 

Joan Marston

Founder PALCHASE (Palliative Care in Humanitarian Aid Situations and Emergencies)

Acknowledging the Need

After many years of advocacy, the global palliative care community celebrated the unanimous and enthusiastically-supported passing of the World Health Assembly Resolution 67:19 of 24 May 2014 calling for  strengthening of palliative care as a component of comprehensive care throughout the life course”(1). This call included urging all governments to integrate palliative care into their health systems, provide relevant training and personnel, and ensure required resources including essential medicines and opioids. While all member states signed the Resolution, some are working actively to implement it, and palliative care is recognized as a human right (2), most countries have yet to even write national policies.

The Global Atlas of Palliative Care (Worldwide Hospice Palliative Care Alliance and WHO)(3) estimates around 40 million people would benefit from palliative care in the last year of life.  International Children’s Palliative Care Network research estimates over 21 million children living with palliative care needs, most living in low and middle-income countries.(4) Even in high income contexts, there are many barriers to mainstreaming palliative care, including insufficient resources, programmes and personnel to provide palliative care for all. The provision of palliative care worldwide still has ways to go to become integrated into health care systems and be seen as an integral part of comprehensive health care.(5)

Humanitarian Contexts

While we have estimates of the need for palliative care in relatively stable populations, we have no similar assessments in humanitarian situations. We can assume that where populations experiencing humanitarian emergencies remain in their home country, any pre-existing level of need for palliative care would persist or even increase under the additional strains of the emergency (depending on the humanitarian situation). There is a growing realization that it is precisely in these situations where there is a high level of physical and emotional trauma and death that palliative care is needed (6). Whether a humanitarian situation is caused by natural disaster, disease or conflict, those caught up in the disasters may have pre-existing conditions requiring palliative care such as cancer, HIV, cardiac failure or may develop conditions that would benefit from palliative care (i.e. Ebola and traumatic disabilities). Babies will continue to be born with congenital anomalies, metabolic conditions and cerebral palsy and others may receive a fresh diagnosis of cancer, heart disease or one of many other serious illnesses.

In longer-term situations such as refugee camps people have many different life-limiting and chronic conditions, and they should not be forgotten. With the huge and growing number of refugees and migrants changing the demographics of countries, estimates of the need for palliative care in those countries receiving refugees and migrants must also be reviewed.

A Lack of Guidelines

At present there are no specific guidelines for providing palliative care in humanitarian situations, nor is palliative care included in the Sphere Handbook, although there is an indication that it will be included in the next edition. For the present, existing guidelines and educational courses could be adapted for use.

There is, however, promising progress and an increasing number of activities aimed at changing the present situation. The World Health Organization Department of Service Delivery and Safety has set up a Palliative Care Community of Practice with a specific group looking at developing the necessary materials for humanitarian situations. The EAPC-European Association of Palliative Care is planning a Task Force to work on palliative care for refugees and migrants and there will be a discussion on this at the EAPC Conference in Madrid in May. 

Concerned professionals from different world regions have joined together to form PALCHASE – Palliative Care in Humanitarian Aid Situations and Emergencies, which is establishing under the “umbrella” of the International Association for Hospice and Palliative Care. Members of PALCHASE from the Humanitarian Health Ethics Research Group in Canada are carrying out research on many fronts in this area; others actively advocating for those with life-limiting conditions in humanitarian situations; and the group is  bringing together information on activities, and individuals interested in in this field. We are hearing from palliative care practitioners of their care for refugees and migrants in countries such as Jordan, Uganda and Germany. Reports are coming in from various groups looking at setting up programmes or planning future research.

A Global Cause

Global and regional palliative care associations are committed to supporting the PALCHASE initiative and have developed a joint statement for circulation in the near future. It will call on governments, the WHO, their member hospices, and palliative care programmes to reach out to care for those affected by humanitarian situations and calling for a basic palliative care package that would include opioids.

We can learn from past experiences. During the palliative care response to HIV/AIDS, anti-retrovirals were not readily available and mortality was high. More recent epidemics such as the Ebola Crisis in West Africa further underscored the importance and need for palliative care..

While much needs to be done, there is a real will to take palliative care into humanitarian situations through education, integration into existing humanitarian response organizations, advocacy, research and model development. This speaks to a recognition that palliative care is a humanitarian imperative.(7)

   

REFERENCES

  1. Sixty-seventh World Health Assembly. Resolutions, Annexes, Documents. www.who.int/mediacentre/events/2014/wha67/en/
  2. L Gwyther, F Brennan, R Harding. Advancing Palliative Car as a Human Right. JPSM 2009; 38:767-774
  3. S. Connor and MC Sepulveda Bermedo. WHO and WPCA. Global Atlas of Palliative Care at the End of Life. 2012 www.thewhpca.org/
  4. S Connor; J Downing; J Marston. Estimating the Global Need for Palliative Care for Children: a cross-sectional analysis. JPSM Vol 53 No2 February 2017
  5. J Marston, L Delima, R Powell. Palliative Care in complex Humanitarian Crisis Responses. The Lancet. Vol 386. No 10007, P1940, 14 November 2015
  6. J Smith, T Aloudat. Palliative Care in Humanitarian Medicine. Palliative Medicine 31 (2): 99-101
  7. Dr Dainius Puras. UN Special Rapporteur on the Right to Health. 70th Session UN General Assembly 30 July 2015
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Ebola: The Cruel Loss of a Father

Ibrahima Barry (Translated from the French by: Jennifer Akerman)

Introduction

It was the end of the university’s academic year. After finishing my sociology exams in Conakry, I was in a hurry to join parents, brothers and sister on holiday in N’Zérékoré.

My father, surgeon-physician and Deputy Director of the regional hospital, was pleased with my work because he had great hope in me, his eldest son. My family vacation took place in the warm atmosphere of familial reunion.

As for my father, he was very busy getting involved in the fight against the hemorrhagic fever of the Ebola virus that was ravaging the Guinean forest.

Thus, on Monday, September 15, 2014, he announced that he was leaving early the next morning as part of a mission led by the Regional Governor and the Prefect of N’Zérékoré to raise awareness among the populations in Womey, a sub-prefecture area.

The Fateful Day

After I woke up on Tuesday, September 16, I asked for news of my father. My mother informed me that he had already left, accustomed as he was to respecting appointment times. We did not receive any phone-calls from him during the day, although he usually would telephone us to hear our news. Our mother, my brothers, my sister and myself all tried to call him without success. The answering machine said he was unreachable. We told ourselves that he must have been very busy, and waited for the evening.

At around 7pm, the General Director of the hospital in N’Zérékoré, Dr. Yamoussa Youla, accompanied by Dr. Bah, came to our home where they found us following a RTG program. Seeing them at that late hour without our father intrigued us, especially because they seemed worried.

“I did not want to come and see you until we had news of Dr. Barry.”

“What happened?”

“The Mission of Awareness was taken hostage and when we called the missionaries, their phones were off. Military personnel went to Womey to control the situation, and the Ministers of Health and Communication are currently on route from Conakry to N’Zérékoré.

“So, you have no news of the missionaries?”

“For the moment, only the Governor and the Prefect have been able to escape and return safe and sound.”

I then asked myself how they were able to escape leaving the others behind when they all  left together under the direction of the Governor and the Prefect.

I did not close my eyes all night thinking of my dear father:

“Is he alive? Is he dead? Is he in the bush, or hidden somewhere, or lost in nature?”

All the members of my family passed the time by calling him without success, without sleeping, until the morning.

The worried neighbours, friends and collaborators of my father who had heard the news then invaded us.

Thus, we spent Wednesday, September 17th in total unease. Personally, I stayed optimistic by telling myself that I needed to keep my composure, consoling my mother, my sister and my younger brothers, as the eldest of the family.

According to the information I received from the neighbours, the ministerial delegation arrived to N’Zérékoré, and went directly to Womey. On Thursday, September 18th, there was still no specific news.

For this reason, the staff from N’Zérékoré decided not to work and go see the Governor and the Prefect demanding to know what happened to the other members of the mission that they themselves had directed to Womey. The Director of the hospital was finally able to convince them not to go in front of these authorities, but instead they stopped working.

The afternoon of that same day, the Minister of Health and his delegation came to the hospital to take some bags and products before leaving again for Womey in the company of several doctors.

The Macabre Truth

In truth, the eight missionaries had all been massacred by the population in revolt, and were buried in a mass grave covered with sand in the courtyard of the school. The villagers had fled, taking refuge in the bush. The only people who were left in the village were the elderly people that could not manage to displace themselves.

The eight assassinated missionaries consisted of:

  • 3 doctors: my father, Dr. Mamadou Aliou Barry; the Prefect Director of Health, Dr.Ibrahima Fernandez; and the Director of a Private Christian Health Center.
  • 3 journalists: 2 from the rural radio (Molou Chérif et Sidiki Sidibé) and 1 from the local private radio station Zali FM (Facely Camara)
  • the Sub-Prefect (Moriba Touré)
  • the Pastor

The doctors unearthed the eight bodies in the presence of the ministerial delegation, wrapping them in the various bags taken from the hospital to bring them back to the city of N’Zérékoré. Around 5pm, the remains were transported to the cold room in the hospital morgue; soldiers were posted on guard and instructed not to allow anyone to see the bodies.

A cousin trainee in medical emergency department of the hospital went to the morgue around 7pm, but was prevented from seeing the bodies. On Friday, September 19th, the Director of the general hospital informed me that the ministerial delegation would pay a visit to our family. We received them under a tent in front of our house the presence of a large crowd.

The Minister of Communication, on behalf of the Government, confirmed the sad news of the assassination of our father, Dr. Barry, while the Minister of Health, Colonel Remy Lamah cried in grief.

I then decided to go to the hospital morgue, because I would not be convinced of my father’s death until I saw his body. I met a few doctors and soldiers who blocked my path. I introduced myself by saying that I was the first-born son of Dr. Barry, Deputy Director of the hospital, and I wanted to see my father’s remains. They refused, and I responded by saying that I would not leave until I saw his body.

The soldiers informed the management of the hospital whose members met and finally allowed me to enter the morgue. I saw my father’s body lying as if he was sleeping, but they didn’t give me much time before they ordered me to leave again.

I returned home with tears in my eyes, and I informed my mother and my brothers that our father had in fact been assassinated in Womey- a village that I do not know, but will never forget.

Finally, we were informed that the funeral would take place in N’Zérékoré at 2pm the next day. I asked the Minister of Health to allow us to have the body of our father at my family’s disposal so that we could bury him in our village of Sallia, Sub-Prefecture of Bantignel, Pita. The Minister begged us to accept that all of the bodies, without exception, be buried here, in N’Zérékoré.

We had no choice, and when the time came, I went to the morgue.  I helped carry the eight bodies that were loaded onto a military truck headed for the cemetery. I followed behind the truck in a car, and participated in the internment of the bodies.

At the end of the burial, the Minister of Communication, on behalf of the government, said that justice will do its duty, and that those who participated in these assassinations will be arrested, brought to trial and condemned. A sum of money was given to each family member.

Conclusion: Broken Lives

Faced with this tragic destiny, what will become of my family without my dad, the pillar of a harmonious and united family, the unfailing support of our village community attached to the bonds of solidarity of the extended family? What can I do, a young student without experience confronted with the role of the eldest son who must replace the father? The sight of the eight lifeless bodies at the morgue, the remains of well-known and respected personalities, sends shivers down my spine. This atrocious spectacle marking the dramatic and terrible end of my dear father was a shock that I will carry with me for the rest of my life.
Ibrahima Barry is pursuing a Masters in Social Actors and Local Development through Guinea’s new Socio-Anthropological Analysis Laboratory, in Conakry (Guinea). This narrative is adapted from a version published in March 2016 by l’Harmattan Editions (Conakry) in a collected volume of works by young others titled Ebola.