Takhliq Amir presented her fourth-year research project poster this week at McMaster University. Congratulations on the great analysis!
Takhliq Amir presented her fourth-year research project poster this week at McMaster University. Congratulations on the great analysis!
On March 14, McMaster’s Department of Health Research Methods, Evidence and Impact hosted its annual Research Day.
The HHErg was well represented this year with two poster presentations (below) and an oral presentation entitled, “Dying in the Margins: Palliative Care, Humanitarian Crises and the Intersection of Global and Local Health Systems.”
Have a look at a summary of the events that took place 26-27 September when the HHE Research Group visited Geneva.
Thank you to our co-hosts CERAH, and to all of our participants over the two days and one evening of exciting activities.
From 8-12 October the Fifth Global Symposium on Health Systems Research was held in Liverpool, UK.
The HHE research group was well represented with a presentation on the Perceptions of Ebola Virus Disease Research project by Ani Chénier entitled “Beyond Triumphalist Discourses” and a poster on the Palliative Care in Humanitarian Crisis settings.
The full citation of the presentation is:
Elysée Nouvet, Ani Chénier, Oumou Bah-Sow, John Pringle, Sékou Kouyaté, Sonya de Laat, Matthew Hunt, Carrie Bernard, Lynda Redwood-Campbell, Laurie Elit, Lisa Schwartz, Beyond triumphalist discourses: West African voices on the need to recognize and sustain national research capacity in the wake of the 2014-6 Ebola epidemic. Fifth Global Symposium on Health Systems Research, 8 –12 October 2018,Liverpool, UK.
BACKGROUND The 2014-6 West African Ebola epidemic, in which a neglected disease for which no effective treatment or vaccine was yet known claimed over 11,000 lives, was a stark reminder of the essential role that health research plays within health systems.
In 2016, we launched the “Perceptions and moral experiences of research conducted during the West Africa Ebola outbreak” study. This qualitative study seeks to better understand socially-situated practices and moral experiences of research conducted in public health crisis situations, and to deepen understanding of challenges to and strategies for the ethical conduct of research during public health emergencies. It explored, among other issues, the practical and ethical complexities of international research collaborations established during the outbreak.
METHODS We conducted in-depth semi-structured interviews with 108 stakeholders directly involved in research at trial sites in Guinea, Sierra Leone, and Liberia. Participants included: 1- people having participated in clinical and persistence studies; 2- people engaged in the conduct of research (as investigators or research staff), 3- local and international research ethics board members; 4- governmental and civil society leaders. Most (91%) were from West African countries.
RESULTS Participants identified many strengths of research conducted during the outbreak, notably: 1) the success of some international partnerships (especially vaccine trials), 2) the development of innovative and adapted strategies for communicating with participants, 3) opportunities for capacity building, especially for first-time researchers, and 4) rigorous and constructive oversight by national research ethic boards.
Key challenges or failures included: 1) limited opportunities for higher-level engagement of affected-country researchers within international partnerships, 2) limited engagement of mid- or late-career researchers in the development or leadership of studies, 3) unequal access to and control over research materials like bio-samples, and 4) failures to sustainably invest in national research institutions.
CONCLUSIONS Our findings highlight the important role played by health research within local and national health systems, and complicate triumphalist discourses about the role of ‘capacity building’ in international research. During the 2014-6 West African Ebola outbreak, efforts towards capacity building were appreciated by many. Yet many also expressed frustration with the lack of investment in national research infrastructure and institutions, and the lack of opportunities for mid- and late-career researchers from affected countries. This had important practical implications, notably for the setting of research priorities that reflect needs and possibilities at the national level. Capacity must not only be built: it must also be recognized, supported, and sustained.
Full reference for the poster:
de Laat, S., Matthew Hunt, Elysée Nouvet, Olive Wahoush, Kevin Bezanson, Carrie Bernard, Lynda Redwood-Campbell, Laurie Elit, Wejdan Khater, Oumou Bah Sow, Emmanuel Musoni, Rachel Yantzi, Ani Chénier , Lisa Schwartz, Dying in the Margins: Palliative Care, Humanitarian Crises and the Intersection of Global and Local Health Systems, Fifth Global Symposium on Health Systems Research, 8 –12 October 2018, Liverpool, UK, Abstract ID: 3989
The poster is available below (& here as a PDF):
OBJECTIVES There is no doubt that the primary goal of humanitarian healthcare has to be to save lives. Given the extremity of the crises in which humanitarians respond, not all lives can be saved. There is a growing acknowledgment of the role of palliative care in humanitarian healthcare. Here we present an interpretive description of the experience of palliative care in a variety of humanitarian crisis settings. Our objective is to map the diversity of those experiences and to examine the innovations and inconsistencies of global and local health systems to assess the obstacles and opportunities of these health systems in the support of palliative care during international humanitarian crises.
METHODS Four case studies were identified through stakeholder meetings and key informant interviews that represent a broad range of humanitarian emergency situations where palliative care needs arise:
For each case study, in-depth, semi-structured interviews exploring experiences, needs, frustrations, and possibilities for palliative care were conducted with patients or family members of individuals with a terminal or life-threatening condition suited to palliative care. Along with interviews with crisis-affected people, local and international humanitarian healthcare providers were interviewed at each site.
RESULTS Global and local health systems—independently and intersecting with each other—emerged as a recurrent source of barriers to the provision of palliative care. Dominant themes include: global restrictions and local cultural anxieties to accessing essential medications for symptom relief; importance of culturally relevant, and locally informed, care and psychosocial support; the lack of international and local palliative care guidelines, training, and support for the provision of palliative care during international humanitarian crisis events. Changes to global health systems and improved interaction between local and international actors were cited as enablers to comprehensive palliative care provision. Palliative care was recognized as an essential component of holistic, comprehensive humanitarian healthcare, and should never act as a substitute to health system improvements for curative care.
DISCUSSION The alleviation of suffering is central to the work of humanitarian healthcare, and yet competing priorities often result in a lack of attention to palliative care. Our study presents critical insight onto the role of local and global health systems in the provision of palliative care in contexts of humanitarian crises.
From September 17-19, Kevin Bezanson represented the Humanitarian Health Ethics research group at the 5th International Public Health and Palliative Care Conference held in Ottawa, ON.
Here is the PDF version of the poster entitled –
Health professionals’ lived experiences of palliative care provision in humanitarian crisis: Moral experiences confronting the suffering of patients who are dying or likely to die in settings of war, disaster, or epidemic.
The poster is based on ongoing research for a R2HC funded project entitled:
From a new resource on Community of Practice for Integrated People Centred Palliative Care by WHO, firstname.lastname@example.org.
Additional interviews prepared by WHO’s Community of Practice for Integrated People Centred Palliative Care:
|Interview of Dr Christian Ntizimira Médecin Head of Avocacy & Research department of Rwanda Palliative Care and Hospice Organization|
|Interview of Katherine Pettus, Advocacy Officer for Human Rights and Palliative Care at International Association for Hospice & Palliative|
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.
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.
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.