Palliative Care in Natural Disaster Response

Reports for humanitarian practitioners & policymakers

Dying alone is hard anywhere in the world”: Palliative care in natural disaster response 

“Dying alone is hard anywhere in the world” (PDF): Palliative care in natural disaster response 

Natural Disasters – Report and Recommendations”: Palliative care in natural disaster response. A research snapshot

 

Key Findings 

The following key findings emerged from the natural disasters sub-study: 

  • Participants described palliative care as a key component of comprehensive humanitarian healthcare involving companionship and psychosocial support for patients and their families, dignity in death and dying, and the management of pain and other distressing symptoms.
  • Barriers to the provision of palliative care in natural disaster settings included damage to health structures; inadequate resources; disrupted supply chains; the invisibility of patients with palliative needs; differences in local cultural norms; the prioritization of acute needs; and challenges of mobility and access to care. 
  • Despite existing limitations, respondents agreed that humanitarian aid organizations have an ethical obligation to provide palliative care.
  • Integration of palliative care may play a role in alleviating distress among disaster responders, particularly those from affected communities. 
  • Participants emphasized that palliative care must be integrated into disaster planning from the beginning; otherwise, it is likely to be neglected during a crisis. 
  • There was a clear consensus concerning the need for palliative care training and protocols to guide practice in natural disaster settings. 

 

Overview: Focus on Natural Disasters Settings  

According to the World Health Organization, a natural disaster is “an act of nature of such magnitude as to create a catastrophic situation in which the day-to-day patterns of life are suddenly disrupted and people are plunged into helplessness and suffering, and, as a result, need food, clothing, shelter, medical and nursing care and other necessities of life, and protection against unfavourable environmental actors and conditions.” [1] While we use the term “natural disasters” in this sub-study, it is widely recognized that the impacts of natural disasters such as earthquakes and tsunamis are shaped by human activity, degrees of vulnerability of certain communities, and action or inaction to mitigate natural hazards. [2] The annual death rate due to natural disasters is around 90,000 people worldwide, with approximately 160 million others also affected. [3] Over the last 10 years, 95% of the nearly two billion people affected by natural disasters were affected by a weather-related event. [4] 

Like conflict settings and public health emergencies, natural disasters can overwhelm the capacity of health systems to meet the needs of the general population. This constitutes a humanitarian crisis, wherein the health and well-being of large groups of people are threatened due to factors such as lack of access to care, infrastructure damage, and resource scarcity. In recent years, many nations, including Haiti, Nepal, Pakistan, India, and Japan have experienced significant losses of life and devastation to infrastructure due to natural disasters. 

Natural disasters, including famine, can exacerbate conditions in regions experiencing conflict, and are often a factor in the development or escalation of violence. Likewise, ongoing conflict in disaster-affected countries can further limit or hinder disaster response. This perpetuates a continuous cycle of poverty and instability for such countries and constrains the possibilities for disaster preparedness and response by local and international care providers.

 

Natural Disasters Sub-Study Objectives 

  1. To develop evidence clarifying the ethical and practical possibilities, challenges, and consequences of palliative care needs following natural disasters. 
  2. To inform realistic, context-sensitive guidance, education, and practices for the provision of palliative care during natural disaster response. 

 

Summary of our Approach

In-depth, semi-structured interviews (N = 20) were conducted with international and local healthcare providers who had responded to a variety of natural disasters. For this sub-study, we included natural disasters that often strike without warning (earthquakes, landslides, and flash floods); those with a short warning time frame (tsunamis, hurricanes, typhoons and flooding); and protracted or foreseeable disasters (famine). The relationship between conflict and natural disasters was also explored. 

Natural Disasters Team 

Team Lead:  

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Rachel Yantzi RN, MSN/MPH – PhD student in Health Research Methodology, McMaster University, Hamilton, Canada 

 

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Takhliq Amir, BHSc – MD student at the Michael G. DeGroote School of Medicine, McMaster University, Hamilton, Canada 

 

Matthew Hunt, PhD, PPT – Professor, School of Physical and Occupational Therapy, McGill University, Montreal, Canada  

Lisa Schwartz,PhD – Professor & Arnold L. Johnson Chair in Healthcare Ethics, McMaster University, Hamilton Canada 

Sonya de Laat, PhD – Academic Advisor & Global Health Scholar, Global Health Program, McMaster University, Hamilton, Canada 

Carrie Bernard MD MPH CCFP FCFP – Assistant Professor, Department of Family and Community Medicine, University of Toronto, Toronto, Canada 

Laurie Elit, MD – Professor of Obstetrics and Gynecology, McMaster University, Gynecologic Oncologist, Hamilton Health Sciences, Hamilton, Canada 

Corinne Schuster-Wallace, PhD – Associate Professor, Faculty of Geography & Planning, University of Saskatchewan, Saskatoon, SK

Lynda Redwood-Campbell, MD, FCFP, DTM&H, MPH, Canadian Red Cross International Emergency Response Unit, Professor of Family Medicine, McMaster University, Hamilton, Canada

 

Outputs 

Conference Oral Presentations: 

  • Schwartz L, de Laat S, Yantzi R, Nouvet E, Bezanson K, Amir T, et al. Refugee experiences of palliative care in humanitarian settings: Views from conflict and disaster. 30th Annual Canadian Bioethics Society Conference; 2019 May 22-24; Banff, Canada.  
  • Yantzi R. Dying in the margins: Palliative care, humanitarian crises and the intersection of global and local health systems. Presented at: 16th Annual HEI Research Day, McMaster University; 2019 Mar 14; Hamilton, ON.  

Conference Poster Presentations: 

References 

  1. Assar, M. Guide to sanitation in natural disasters. World Health Organization. 1971. Available from: https://apps.who.int/iris/bitstream/handle/10665/41031/10678_eng.pdf;jsessionid =890EB054FAB45D038B5BC2F479F6E813?sequence=1 
  2. World Health Organization. Definitions: emergencies. 2020. Available from: https://www.who.int/hac/about/definitions/en/ 
  3. World Health Organization. Environmental health in emergencies. 2020. Available from: https://www.who.int/environmental_health_emergencies/natural_events/en/ 
  4. International Federation of Red Cross and Red Crescent Societies. (2018). World disaster report: Leaving no one behind. Available from: https://media.ifrc.org/ifrc/world-disaster-report-2018/ 

New Report: “Dying alone is hard anywhere in the world” – palliative care in natural disaster response

READ THE FULL REPORT: Natural Disasters – Report and Recommendations

In response to the emerging recognition of the need for palliative care, the Humanitarian Health Ethics Research Group undertook a program of research in order to understand the ethical dimensions of palliative care during humanitarian action. Here, we present key findings of the sub-study focused on natural disaster settings that was part of this larger program of research. Through this series of reports, we hope to present the perspectives of those engaged in humanitarian healthcare firsthand – as patients, host community members, policymakers, and local and international healthcare providers – in order to clarify how humanitarian organizations and humanitarian healthcare providers might best support ethically and contextually-appropriate palliative care in a range of humanitarian crises.

KEY FINDINGS:

  1. Participants described palliative care as a key component of comprehensive humanitarian healthcare involving companionship and psychosocial support for patients and their families, dignity in death and dying, and the management of pain and other distressing symptoms.
  2. Barriers to the provision of palliative care in natural disaster settings included damage to health structures; inadequate resources; disrupted supply chains; the invisibility of patients with palliative needs; differences in local cultural norms; the prioritization of acute needs; and challenges of mobility and access to care.
  3. Despite existing limitations, respondents agreed that humanitarian aid organizations have an ethical obligation to provide palliative care.
  4. Integration of palliative care may play a role in alleviating distress among disaster responders, particularly those from affected communities.
  5. Participants emphasized that palliative care must be integrated into disaster planning from the beginning; otherwise, it is likely to be neglected during a crisis.
  6. There was a clear consensus concerning the need for palliative care training and protocols to guide practice in natural disaster settings.

Suggested citation: Amir, T., Yantzi, R., de Laat, S., Bernard, C., Elit, L., Schuster-Wallace, C., Redwood Campbell, L., Hunt, M. & Schwartz, L. (2020). “Dying alone is hard anywhere in the world”: Palliative care in natural disaster response. Isis A. Harvey designer. Available online at http://www.humanitairanhealthethics.net.

Triage and COVID-19: global preparedness, socio-cultural considerations, and communication

Principal Investigators: Elysee Nouvet PhD, Lisa Schwartz PhD

Report: Triaging Critical Care During COVID-19- Global preparedness, socio-cultural considerations, and communication

Link to Survey: https://uwo.eu.qualtrics.com/jfe/form/SV_e2QyBOV2dBa9ECp

Triage – The process of deciding the order of treatment of a large number of patients based on the severity of each case. In severe cases can result in treatment of only the sickest due to scarcity of resources.

This study aims to understand (1) what health care workers consider crucial to the
treatment of patients that will not be prioritized for care during the COVID-19 pandemic, (2) if and how such triage plans will be shared with the affected populations, as well as (3) what social and cultural considerations are important during such communication. We will be conducting virtual interviews with 50 healthcare workers around the world that are involved in triage guideline implementation during the current COVID-19 pandemic. Alternatively, participants can submit written reflections to key questions via LimeSurvey. Descriptive analysis will be employed to identify patterns and differences in the data collected. An open-access report will be published with the results and a webinar produced in partnership with the World Health Organization (WHO) Global Outbreak Alert and Response Network (GOARN) Research working group. These findings will help healthcare organizations and governments across the world develop and implement triage guidelines and relevant communication strategies that take into account contextual differences. This study is a collaboration between Western
University, Humanitarian Healthcare Ethics Research Group, and the WHO COVID-19 social sciences research committee.

From Tokenism to Meaningful Partnerships

North-South research partnerships are a critical means of advancing global health research. However, research partners from the Global South have described feeling they were included to full funding requirements, and offered only token roles, saying “we were there to colour the soup.” Despite good intentions, researchers from the Global North often fall into patterns of tokenism. This 2-page report captures key lessons learned from our experiences of and data collected from two elrha-r2hc funded studies: (1) Aid when there is ‘nothing left to offer’: A study of ethics & palliative care during international humanitarian action, and (2) Isolation, quarantine, and research in Ebola management: A comparative study of stakeholder perceptions and experiences. These reflections point to possible strategies to move toward the goal of authentic partnerships during humanitarian health research. It reflects the reality that the overwhelming majority of transnational partnerships are collaborations in which researchers from Global North countries partner with researchers from what are essentially “research site” countries in the Global South.

PDF: FROM TOKENISM TO MEANINGFUL PARTNERSHIPS – FINAL [EN]

PDF: FROM TOKENISM TO MEANINGFUL PARTNERSHIPS – FINAL [FR]

 

Suggested Citation(s):

Humanitarian Health Ethics Research Group. (2019). From Tokenism to Meaningful Partnerships. Isis A. Harvey designer. Available Online on the Humanitarian Health Ethics Website.

Humanitarian Health Ethics Research Group. (2019). Du symbolism aux partenariats authentiques. Traduction [de l’anglais]: Aziza Mohamadhossen. Isis A. Harvey conception graphique. Disponible sur le site web de Humanitarian Health Ethics.

 

Ethics and crisis translation: insights from the work of Paul Ricoeur

New Paper by Donal O’Mathuna & Matthew Hunt

https://www.emerald.com/insight/content/doi/10.1108/DPM-01-2019-0006/full/

“Paul Ricoeur was one of the leading philosophers in the twentieth century, writing on a wide variety of topics. From these, his work on translation and on ethics provided suitable ways to examine ethical issues in crisis translation. In particular, his concept of “linguistic hospitality” provides an important lens through which translation ethics can be examined. In addition, Ricoeur’s approach to ethics emphasized relational and justice dimensions which are crucial to examine in humanitarian settings.”

 

Epistemic Injustice and Humanitarian Action: The case of language and translation

Ryoa Chung is an Associate Professor in the Department of Philosophy at the Université de Montréal.

Matthew Hunt is an Associate Professor and the Director of Research in the School of Physical and Occupational Therapy at McGill University.

This article originally appears on the University of Edinburgh Law’s Justice in Global Health Emergencies & Humanitarian Crises Blog. 

“Access to information has been described as a humanitarian good, alongside other basic needs such as food, water, shelter and healthcare [1]. Accountability is a major priority in the humanitarian sector, including accountability of non-governmental organizations toward the communities they serve. Coordination of aid between humanitarian organizations, and with local governments and agencies, has been identified as a key concern for effective crisis response [2]. And yet, All three of these activities – sharing information, practicing accountability and coordinating aid responses – are predicated upon the mobilization and exchange of knowledge, and serve to illustrate their centrality to humanitarian action. Important ethical concerns exist, however, when some individuals or groups are excluded from the pooling and exchange of knowledge. One source of exclusion relates to the linguistic dimensions of humanitarian aid: what languages are spoken by whom and for which purposes, what language barriers exist, what credibility or authority is or is not associated with people speaking certain languages, and whether translation is available….”

READ MORE AT: https://www.ghe.law.ed.ac.uk/epistemic-injustice-and-humanitarian-action-the-case-of-language-and-translation/

[1] Greenwood F, Howarth C, Poole D, Raymond N, Scarnecchia D. The Signal Code: A Human Rights Approach to Information During Crisis. Cambridge; 2016.

[2] Stephenson, Jr, M. (2005). Making humanitarian relief networks more effective: operational coordination, trust and sense making. Disasters, 29(4), 337-350.

On World Humanitarian Day, let’s reflect on relieving suffering through palliative care.

Follow this link to see how Dr. Lisa Schwartz and the HHE team were the focus of a reflection on World Humanitarian Day by the McMaster Global Health Office.

How well was HHErg represented at HEI Research Day 2019? Extremely well, thank you.

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.”

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Pictured from L to R, Jhalok Talukdar, Rachel Yantzi, and Takhliq Amir.

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Downloadable PDF of the Natural Disasters Array poster.

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Downloadable PDF of the Opportunities and Challenges poster.

 

 

Cultural history of the flu: reducing the stigma of Ebola.

Follow the link for a blog post by HHERG’s Sonya de Laat, Postdoctoral Fellow in Humanitarian Health Ethics at McMaster University.

How can cultural history of ‘health’ change disease perception & reduce stigmaA brief comparison of Influenza, 1918-1919, and Ebola, 2014-2015

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