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New Fears, Old Problems – Palliative Care, EVD & the DRC

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.

Dr. Escobio

 

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. 

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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, twenty 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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HHE Trainee Gautham Krishnaraj wins 2nd Place & Dean’s Award in McMaster 3MT

Humanitarian Health Ethics Trainee and McMaster Global Health student Gautham Krishnaraj competed in the McMaster University 3 Minute Thesis Contest last week at the David Braley Health Sciences Centre in downtown Hamilton, Ontario. Krishnaraj came away successful, receiving second place and the Dean’s Award for Excellence in Communicating Research, for his presentation entitled “Nothing Left To Offer”. A full transcript of his speech is below, and a video will be shared as soon as available – congratulations Gautham!

“At the peak of the 1994 Rwandan genocide, Canadian Physician James Orbinski, was frantically taping numbers to patient’s foreheads outside of a Medecins Sans Frontieres field hospital. The code was simple: 1 meant treat immediately, 2: treat within 24 hrs, 3; leave to die. What did this mean? Patients quickly realized that the Number 3 signified that for them, the humanitarians simply had nothing left to offer. Imagine dying alone, in excruciating pain, just meters away from care – in a hospital hallway or parking lot, with a Number 3 taped to your head.

What should be provided to the Number 3’s? My name is Gautham Krishnaraj and this is the central question of my Masters research with Humanitarian Health Ethics Research Group at McMaster University. The save-only ideology exhibited by Dr. Orbinski is reflective of a deep scarcity of resources and undeniably good intentions, but does not represent the historical and foundational principles of humanitarian healthcare. These principles were set forth by Red Cross Founder Henri Dunant in 1864, when he galvanized the citizens of a small northern Italian town to provide impartial care to over 23,000 dying soldiers. The call to humanitarian action was bifold; the citizens were to save lives and alleviate suffering… however this second ideal has slowly fallen by the wayside.

The alleviation of suffering, also known palliative care, is what is offered to those whom we cannot save. It ranges from pain and symptom management to the provision of psychological, social and even spiritual support. The aim of my research is to identify some of the perceived barriers to providing palliative care in humanitarian contexts, and we have begun to do so through a series of hour long, semi-structured interviews with humanitarian healthcare providers and a globally disseminated survey. The topic of funding arose early and often; donors prefer to see the number of lives saved rather than deaths eased. The early interviews have also yielded potential venues for the re-integration of a palliative approach into humanitarian healthcare, including the very triage model that was pushed to its extreme in Rwanda. This research will provide critical insight into the field and inform the development of new organizational policies that will better equip humanitarians for their daily reality of dealing with death.

In one of the most recent interviews, a respondent recalled the story of a Haitian orphan who died while seeking pain medication in the aftermath of the earthquake. She was turned away the first time, because she was an orphan. The second, because she was disabled. She died in the parking lot of the third attempt, where palliative care was not offered. No one should have to die like this, as the right to to dignity remains even in death, and if our initial findings hold true, they suggest that there is always something left to offer.”

Read more on the McMaster Global Health Blog:

http://globalhealth.mcmaster.ca/news-and-events/news/2017/global-health-student-wins-dean%E2%80%99s-award-excellence-3mt%C2%AEcompetition

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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.

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Cab Rides & Landslides in Global Health Research

“I’m on the back of a motorcycle, debriefing with Anjali, the woman conducting my focus groups in Hindi. We’re in a small town in the Himalayas. It’s monsoon season and it’s pouring rain. We weave through traffic, pedestrians, and stalls as I start to record her voice. Rakesh drives and we shout over the noise of the bike, discussing how it went and how we can improve and probe further next time. As we reach the base of the hills, the motorbike roars loudly and the three of us squeeze together as we climb roads too steep for cars. We dismount as we reach the next location, holding hot samosas and bottles of Coke in our hands for the women. I cut the recording.”

Read the rest of HHE Trainee Nicola Gaitlis’ experience in as a QES Scholar at https://machealthforumscholars.com/2017/01/10/cab-rides-and-landslides-in-global-health-research/

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Palliative Care in Humanitarian Crises – James Smith & Tammam Aloudat

James Smith* and Tammam Aloudat**

*UREPH, MSF OCG,

**Medical Department, MSF OCG

James.smith@geneva.msf.org

 

Medical humanitarian organizations don’t generally deal well with death. This may come as a surprise, since it’s a sombre reality of this line of work that frontline staff are often witness to death and dying. Contrary to the humanitarian’s general propensity for self-aggrandizement, it’s not always possible to save lives. So what then of the oft-cited dual imperative to alleviate suffering and preserve dignity?

The evolution of the global HIV / AIDS epidemic during the 1990s, and more recently the 2013-16 Ebola outbreak in West Africa, prompted humanitarian actors to reconsider the role of palliative care in their programmes. During the height of both crises, health actors were pressured by a combination of highly virulent pathogens, inaccessible or non-existent treatment, the sheer number of affected patients, and subsequently very high mortality rates, to reconsider their modus operandi.

In 10 Years of Antiretrovirals MSF acknowledged that, in the absence of affordable anti-retroviral treatment, the organization chose to focus on prevention, palliative care, and the treatment of opportunistic illnesses in Malawi. The more recent Pushed to the Limit and Beyond report detailed MSF’s response to the West African Ebola outbreak. In the following extract Crestani, MSF’s Ebola Task Force Coordinator, offers a harrowing insight into the challenges faced by treatment teams in Monrovia during the summer of 2014:

“We had two choices – let those in who were earlier in the disease, or take in those were who dying and the most infectious … We could only offer very basic palliative care and there were so many patients and so few staff that the staff had on average only one minute per patient.”

In addition to very high mortality situations such as the Ebola and HIV crises, much of MSF’s medical humanitarian work still focuses on common diseases in very low resource health settings. Medical care delivered in hospitals in the Democratic Republic of the Congo or South Sudan, or clinics in Iraq or Syria, may save many lives. However, without the necessary resources and organizational and political prioritization, we continue to lose many patients to injuries and common diseases in these settings. In such cases, little may be done to alleviate the pain and suffering, and optimize end of life care, of those who cannot be treated. Advanced cancers, COPD, and congestive cardiac failure are difficult to treat and have yet to be addressed with necessarily broad management plans that capture the importance of end of life care.


Reflection 1: A Reluctant Acceptance of Limitations of Care

James Orbinski famously referred to MSF’s ‘ethics of refusal’ in the organisation’s 1999 Nobel Peace Prize acceptance speech. But what does this mean at the level of the clinical encounter? Clinicians often persist in their provision of care with curative intent, particularly when treating patients whose conditions are familiar to MSF: consider severe malnutrition and severe malaria, for example. The practice of humanitarian medicine in low resource settings is a continuous struggle between the desire to do better for individual patients, and recognition of a multitude of limitations, which often remain beyond the immediate control of medical personnel. It is imperative that this struggle does not impede the physician’s ability to make the most appropriate clinical decisions for individual patients.


Palliative care is now acknowledged as a central pillar of any comprehensive health system. This is clearly no different in the context of a humanitarian crisis. However, despite recognition that palliative care is routinely practised in many of our programmes, a dearth of evidence and guidance exists to support frontline staff and decision makers. There is no mention of palliative care in the Sphere handbook, and comprehensive reference to pain relief and palliative care is virtually non-existent in most of the publicly available guidelines published by leading medical humanitarian organizations.

How is it that palliative care has been so neglected by the humanitarian sector?

Utilitarianism’s Disregard of the Dying

Humanitarian crises exist where population needs exceed the existing capacity to respond. In situations where overwhelming needs cannot be met in full, difficult decisions must be made. In such circumstances, medical staff are often prompted to adopt a utilitarian approach: the greatest good must be achieved for the greatest number of people. Others adopt a different approach, and seek to intervene with a narrower focus.

Irrespective of the chosen framework, implicit in much of this decision-making is the overarching aim of saving lives. Consider, for example, the way in which crude mortality rates (CMR) and under 5 mortality rates (U5MR) are used to determine success or failure in crisis response. The preservation of life takes priority over other outcome measures.  To palliate becomes tantamount to failure. This is reinforced by a system of humanitarian financing that focuses on outputs and demonstrable outcomes, often of the material kind.

The intention of saving lives is clearly a priority in such circumstances where lives can be saved. However, there is an urgent need to address gaps in our understanding and practice of end of life care where curative and lifesaving interventions fall short. We have identified the treatment of patients with HIV, TB, and complex non-communicable diseases, the victims of trauma and violence, paediatric patients with life-threatening congenital, genetic, and other conditions, and the effective management of pain, as priority issues.

Palliation: Reiterating an Intrinsic Good

The alleviation of suffering is clearly a moral good, as Lisa Fuller explains in Many Missions, One Voice (2003),

‘Demonstrating compassion for people and to alleviating their immediate suffering … are good in themselves, and so need not be evaluated primarily in terms of their good consequences.’

With this in mind, resources should be allocated to improve palliative care programming in MSF projects. Such resources should include the sensitization and training of staff, the development and application of norms and protocols for palliative care, and targeted work to ensure sustained access to tools and medicines, including advocacy to tackle regulatory barriers that prevent the importation and use of opioids in certain countries.


Reflection 2: The Perception of Pain

Pain management, particularly related to the use of opioids, is not consistently practised in MSF projects. There are several reasons for this, including regulatory limitations and a lack of confidence in opioid use by physicians and nursing staff. This is further exacerbated by judgements made on the severity of pain, particularly when dealing with paediatric patients. As an example, we recently asked national staff physicians about their perception of pain in young children in the intensive care unit of a large malnutrition hospital. In a second round, we asked the same question of mothers of the same children. The mothers consistently evaluated the pain to be more severe than the physician estimates. None of the children in question were receiving opioid pain relief despite some suffering from severe cases of malnutrition, malaria, and pneumonia. The reasons cited by physicians for not using opioids include legal issues, lack of training and experience, and the absence of naloxone in some settings.


MSF has an established track record of programmatic and advocacy interventions intended to redress inequity in global health. It is time that we asked serious questions of the neglect of palliative care and pain management in the places we work. Where next from here? As with others in the humanitarian community, we eagerly await further details of the ‘Aid when there is “nothing left to offer” study. In the meantime, MSF is in the process of developing the organization’s first paediatric palliative guidelines, which we hope will shed more light on this important topic.   

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Justice in the Humanitarian Context – Maxwell Smith

msmithMaxwell J. Smith, PhD, MSc

Banting Postdoctoral Fellow, Institute for Health and Social Policy, McGill University

During the 2009-2010 H1N1 influenza pandemic I began working as a research coordinator with the ‘Canadian Program of Research on Ethics in a Pandemic’ (CanPREP).  Hosted at the University of Toronto’s Joint Centre for Bioethics, this program of research involved engaging the Canadian public on ethical issues in pandemic preparedness and response (e.g., the use of restrictive measures like quarantine;1 physicians’ duty to care;2 setting priorities for scarce resources;3 and issues pertaining to global governance4).  What became apparent to me when examining the ethics discourses in pandemic planning and response was that a common and unsubstantiated assumption exists; namely, that the ethics of global public health emergency preparedness and response is perceived as being distinct from the way we think about ethics in what might be considered ‘quotidian’ public health.  For example, Kirkwood suggests that “there must be an ‘escalator clause’ in the utilitarian aspect [of resource allocation] that suggests that in the event of an extensive threat to the existence of a population, the force of this utilitarian aspect becomes the primary consideration in proportion to the threat…the greater the threat, the greater the moral force of utilitarianism in making public health decisions”.5  As another example, Veatch asks whether, in public health emergency preparedness and response, we should “retreat to the utilitarian ethic, making an exception to the ethic of justice that generally prevails in American ethics”.6  Do we tend to be more utilitarian in the way we think about preparing for and responding to public health emergencies as compared to the way we make public health decisions in non-emergency contexts?

This question motivated me to focus my doctoral research on examining the extent to which the perspectives of Canadian public health policy-makers involved in public health emergency preparedness and response are similar or different than those involved in other areas of public health, like chronic disease prevention, specifically in regards to how social justice is conceptualized and negotiated in their work.  Using qualitative interview methods, I found that the perspectives of my study’s participants appeared to be influenced by the perceived goals and contextual features that belong to the programmatic area of public health in which they practiced.  For instance, policy-makers involved in public health emergency preparedness and response described this area’s principal aims as saving the most lives and producing the ‘greatest good’.  Justice-based considerations, interpreted almost entirely in terms of equity, were perceived as being external, or even as being impediments, to these consequentialist, if not utilitarian, aims.  Policy-makers involved in chronic disease prevention, on the other hand, described this area’s central aims in terms of equity and justice; its purpose involves understanding and targeting the unique needs of different populations in order to produce equitable outcomes.  On my interpretation, my study’s findings indicate that the perceived role of social justice considerations in public health emergency preparedness and response may be distinct from how their perceived role in chronic disease prevention; where justice-based considerations are perceived to be part and parcel of the aims of chronic disease prevention, they are perceived as external to, if not constraints upon, the ‘prior’ aim of public health emergency preparedness and response, which is to minimize morbidity and mortality for the greatest number.  The findings of this study have led me to consider whether the way we think about justice in the humanitarian context might be distinct from how we think about justice in public health and global health more generally, and if so, whether this is ethically justifiable.

  1. Smith MJ, Bensimon CM, Perez D, Sahni S, Upshur REG. (2012). Restrictive Measures in an Influenza Pandemic: A Qualitative Study of Public Perspectives. Canadian Journal of Public Health, 103(5): 348-352.
  2. Bensimon CM, Smith MJ, Pisartchik D, Sahni S, Upshur REG. (2012). The Duty to Care in an Influenza Pandemic: A Qualitative Study of Canadian Public Perspectives. Social Science & Medicine, 75(12): 2425-2430.
  3. Silva DS, Gibson JL, Robertson A, Bensimon C, Sahni S, Maunula L, Smith MJ. (2012). Priority Setting of ICU Resources in an Influenza Pandemic: A Qualitative Study of the Canadian Public’s Perspectives. BMC Public Health, 12: 241-252.
  4. Thompson A, Smith MJ, Bensimon CM, McDougall C, Perez DF. (2015). “With Human Health it’s a Global Thing”: Canadian Perspectives on Ethics in the Global Governance of an Influenza Pandemic. Journal of Bioethical Inquiry, 12(1): 115-127.
  5. Kirkwood, K. (2010). In the Name of the Greater Good? Emerging Health Threats Journal, 2(E12), 1-3.
  6. Veatch, R. (2005). Disaster Preparedness and Triage: Justice and the Common Good. The Mount Sinai Journal of Medicine, 72(4), 236-241.

Max Smith is a Banting Postdoctoral Fellow at the Institute for Health and Social Policy at McGill University. 

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Policy & Well Being – Leigh-Anne Gillespie

img_30091Leigh-Anne Gillespie, PhD candidate

Health Policy Program, Political Studies Stream

gilleslb@mcmaster.ca

The lasting impression of participating in a medical mission to Olongapo City, Philippines in 2008 inspired me to pursue a PhD in Health Policy. Policy is far-reaching: the ability of good health policy to improve the well-being of large groups of people – and of poor health policy to degrade it – is humbling.

Since joining the Health Policy PhD Program at McMaster University, I have been immersed in policy analysis and theory. My research, conducted under the guidance of Dr. Lisa Schwartz, focuses specifically on the nature of ethical challenges arising from humanitarian aid agency policies during disaster and conflict response. In-depth, qualitative interviews with organizational members from international aid agencies have shed light on how policy both helps and hinders in various contexts. With keen anticipation of their contributions to the humanitarian sector, I am looking forward to disseminating these findings shortly.

 The interdisciplinary nature of the Health Policy PhD Program has allowed me to flourish. It has pushed me to create my own path and transcend disciplinary boundaries, while at the same time develop a shared language by which to communicate with colleagues. I am grateful for the collaborative approach the program has instilled in me, and look forward to continued opportunities to help advance humanitarian healthcare ethics.

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Geneva & Back Again – Julia Pemberton’s Reflections on Interning at the WHO

Julia Pemberton, PhD candidate
Health Research Methodology Program, Field of Interest: Global Health
pemberj@mcmaster.ca

img_8967This past summer I had the incredible opportunity to join the World Health Organization (WHO) as a Research Intern for three months. At WHO I joined the Global Health Ethics Unit, which is part of the larger Research, Ethics, Knowledge Management Department. The majority of my internship focused on the creation and execution of a qualitative descriptive research study. Entitled “Ethical Issues Associated with Implementation Research: A Descriptive Qualitative Analysis of the WHO Experience from 2005-2015,” this study consists of a document analysis followed by two focus group sessions, one with WHO Technical Officers, and one with past and present WHO Ethics Research Committee (ERC) members. The purpose of this study is to identify and understand the ethical issues identified by the WHO ERC in its review of  Implementation Research (IR) projects submitted for ethical review at WHO. The results from this study will be used to raise awareness on the ethical issues arising in IR and to build capacity of researchers and ethics committees involved in the conduct and review of IR, respectively. The results will also potentially be used to inform a global guidance document on ethical review of IR. In addition to this research project I also was a member of the WHO Intern Board as an Intern Advocate, where I helped connect interns with WHO staff to engage in professional development and networking opportunities. Finally, I was also responsible for the creation of an Intern Alumni platform for the Global Health Ethics Unit, as well as the Global Health Ethics newsletter. In summary, I used my time in Geneva to expand my professional network, and had productive meetings with the International Committee of the Red Cross, Médecins sans frontières, the Council on Health Research and Development (COHRED), and the Geneva Centre for Education and Research in Humanitarian Action (CERAH).

The research activities described above directly relate to my doctoral work. The topic of my dissertation is global health research governance. Governance, or the way political, ethical, administrative, and financial authority applies to a health research system, is an important part

of how these systems are organized and managed, and how they perform. The purpose of my doctoral thesis is to examine how global health research governance is being understood, developed and currently used in the Canadian national health research system. Briefly, my thesis will generate an inductively derived, reflexive, global health research governance model for Canada. Through this work I intend to identify specific value criteria that are indicative of good global health research governance. Foregrounded will be the contribution of global health research ethics to governance beyond research ethics review, and discerning how values are known and reflected in the governance of national health research systems. Once this model of Canadian global health research governance is known, I will be conducting a case study of a global health research partnership (Canada and Zambia) to determine the current reflexivity of the Canadian model and determine what, if any, recommendations for policy and health systems strengthening could be made.

Julia Pemberton is a 3rd year student in the Health Research Methodology PhD at McMaster University, a CIHR Banting & Best Canadian Graduate Scholar, and a recipient of both the CIHR Douglas Kinsella Award in Bioethics and the CIHR Michael Smith Foreign Study Supplement Award.