The Transformative Disaster Risk Governance Webinar Series at York University is continuing with a session on Humanitarian ethics: moral purpose and moral hazard. The keynote is Prof. Hugo Slim, followed by a panel discussion with Professors Peter Timmerman and Nergis Canefe from York University, as well as a Q&A session with the audience.
Author: Humanitarian Health Ethics Research Network
Humanitarian Healthcare Ethics is a place to find practical and educational material for humanitarian healthcare workers as well as students and scholars of humanitarian healthcare ethics. The website developed out of empirical research on the ethical dilemmas faced by humanitarian healthcare professionals working in humanitarian crises, disasters or areas of extreme poverty.
Due Jan 31 – Submissions for Casebook on Ethical Issues in Epidemic Research
Jan 27 Webinar: MSF’s Stories of Change as a health promotion method in humanitarian settings
Join the Canadian Coalition for Global Health Research and Western University (London, Canada) on Wednesday January 27 @ noon for a webinar on “MSF’s Stories of Change as a health promotion method in humanitarian settings”
Webinar link is (no registration needed or password): https://westernuniversity.zoom.us/j/94114166799
Abstract
Health-care decisions, such as changing practices to reduce the risk of the transmission of an illness, are not only based on biomedical knowledge but also on local knowledge, perspectives and experiences. Health promotion (HP) strategies should therefore both disseminate biomedical illness information and information that includes local knowledge and experiences. Yet, in practice it remains challenging to move away from the more ‘traditional’ health education approaches to participatory approaches that include local knowledge.
In 2019, MSF provided medical support in Goma responding to a cholera outbreak. A pilot of a participatory storytelling intervention was carried out to support the HP team in their efforts to encourage people to adapt protective hygiene practices. This interactive storytelling method presented an alternative to the traditional HP approach of top-down one-way communication. This webinar brings four individuals with front line experience using MSF’s Story of Change as a simple, sustainable, cost effective method for health promotion.
“We Live on Hope…”: Ethical Considerations of Humanitarian Use of Drones in Post-Disaster Nepal
PhD candidate Ning Wang at the Institute of Biomedical Ethics and History of Medicine (IBME), University of Zurich recently published an articles in the IEEE Technology and Society Magazine entitled: “We Live on Hope…”: Ethical Considerations of Humanitarian Use of Drones in Post-Disaster Nepal. This work results from a three-week field study in rural Nepal, where local population’s livelihood was affected by the 2015 earthquake, and where drones were used in assisting disaster relief work. The article focuses on the ethical considerations associated with the use of technology for humanitarian purposes, and raises awareness for the need of critical analysis in the deployment of technology in the aid sector.
Full text can be accessed here. A related live talk regarding this case study is available here. The author can be contacted at: ning.wang@ibme.uzh.ch.
Abstract
The noticeable turn to technology in humanitarian action raises issues related to humanitarianism, sovereignty, as well as equality and access for at-risk populations in disaster zones or remote areas lacking sufficient healthcare services. On a technical level, practical challenges include heightened risks of data safety and security, and the potential malicious use of technology. On a societal level, humanitarian innovation may disrupt relations between different stakeholders, may widen inequality between those with access and those without, and may threaten privacy, disproportionately affecting the vulnerable population. Drawing on the empirical findings of a case study of the 2015 Nepal earthquake, this paper presents an in-depth normative analysis to identify contextualised ethical considerations, and illuminate the wider debate about how technological innovation in the aid sector should be operationalised. In conclusion, on the normative level, a prudent attitude in adopting novel technology in the aid sector is required; while on the operational level, proposals for actionable ethical standards to guide and safeguard sector-wide innovation practices are needed.
Keywords
Humanitarian technology; community consent; technology assessment; data safety and security; regulation deficit; stakeholder accountability
New Publication – Closing well: national and international humanitarian workers’ perspectives on the ethics of closing humanitarian health projects
Read the full paper: https://jhumanitarianaction.springeropen.com/articles/10.1186/s41018-020-00082-4
Abstract excerpt: We identified six recurrent ethical concerns highlighted by interviewees regarding closure of humanitarian projects: respectfully engaging with partners and stakeholders, planning responsively, communicating transparently, demonstrating care for local communities and staff during project closure, anticipating and acting to minimize harms, and attending to sustainability and project legacy. We present these ethical concerns according to the temporal horizon of humanitarian action, that is, arising across five phases of a project’s timeline: design, implementation, deciding whether to close, implementing closure, and post-closure. This exploratory study contributes to discussions concerning the ethics of project closure by illuminating how they are experienced and understood from the perspectives of national and international humanitarian workers. The interview findings contributed to the development of an ethics guidance note that aims to support project closures that minimize harms and uphold values, while being mindful of the limits of ethical ideals in non-ideal circumstances.
Hunt, M., Eckenwiler, L., Hyppolite, SR. et al. Closing well: national and international humanitarian workers’ perspectives on the ethics of closing humanitarian health projects. Int J Humanitarian Action 5, 16 (2020). https://doi.org/10.1186/s41018-020-00082-4
New Publication: Addressing obstacles to the inclusion of palliative care in humanitarian health projects
Abstract excerpt:
Participants discussed various obstacles to the provision of palliative care in humanitarian crises. More prominent obstacles were linked to the life-saving ethos of humanitarian organizations, priority setting of scarce resources, institutional and donor funding, availability of guidance and expertise in palliative care, access to medication, and cultural specificity around death and dying. Less prominent obstacles related to continuity of care after project closure, equity, security concerns, and terminology. Opportunities exist for overcoming the obstacles to providing palliative care in humanitarian crises. Doing so is necessary to ensure that humanitarian healthcare can fulfill its objectives not only of saving lives, but also of alleviating suffering and promoting dignity of individuals who are ill or injured during a humanitarian crises, including persons who are dying or likely to die.
Hunt, M., Nouvet, E., Chénier, A. et al. Addressing obstacles to the inclusion of palliative care in humanitarian health projects: a qualitative study of humanitarian health professionals’ and policy makers’ perceptions. Confl Health 14, 70 (2020). https://doi.org/10.1186/s13031-020-00314-9
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
- To develop evidence clarifying the ethical and practical possibilities, challenges, and consequences of palliative care needs following natural disasters.
- 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:
Rachel Yantzi RN, MSN/MPH – PhD student in Health Research Methodology, McMaster University, Hamilton, Canada
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:
- Amir T, Yantzi R, Schwartz L. ‘Someone who was expected to die and didn’t’: Implications of the theme of reversibility of triage during humanitarian response to natural disasters. Creating Space 10 Conference; 2020 Apr 17-18; Vancouver, Canada. [Conference cancelled due to COVID-19 pandemic]. Abstract available from: https://static1.squarespace.com/static/5bc617272727be33bbf369d5/t/5e9f38bb4644dd371e01a200/1587493092725/Creating+Space+10+–+Conference+Abstract+Guide+FINAL.pdf
- Amir T. ‘And whom do you let go?’: Exploring the theme of reversibility of triage during humanitarian response to natural disasters. BHSc Poster Day, McMaster University; 2019 Apr 2; Hamilton, Canada. https://humanitarianhealthethics.net/2019/04/04/and-whom-do-you-let-go-a-poster-on-palliative-care-in-natural-disaster-settings/
- Amir T, Yantzi R, de Laat S, Hunt M, Nouvet E, Redwood-Campbell L, et al. ‘So that at the end, you have a gentle landing’: Exploring the role and ethical dimensions of palliative care during humanitarian response to natural disasters. 16th Annual HEI Research Day, McMaster University; 2019 Mar 14; Hamilton, Canada. Poster available from: https://humethnet.files.wordpress.com/2019/03/hei2019_poster_nd-array-final.pdf
References
- 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
- World Health Organization. Definitions: emergencies. 2020. Available from: https://www.who.int/hac/about/definitions/en/
- World Health Organization. Environmental health in emergencies. 2020. Available from: https://www.who.int/environmental_health_emergencies/natural_events/en/
- 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/
Online Seminar – Beyond “Good Enough”: How to Engage Communities with COVID-19 Research Quickly and Effectively
13:00-14:00 GMT+1 (London), June 15th, 2020
Register here: Zoom Registration – Beyond “Good Enough”
This seminar, chaired by HHE’s Dr. Lisa Schwartz will explore the response to COVID-19 and the need for rapid research to develop vaccines, treatments and other kinds of urgently needed knowledge. Previous public health emergencies have demonstrated that good community engagement helps move research forward, ensures it is feasible, relevant, and accepted, and that its findings are taken up. But how can it be done quickly, and in the midst of lockdowns? On this webinar we will explore these questions, and hear from the experts how to bring Good Participatory Practices to COVID-19 research.
Click here for more information
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:
- 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.
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.
Moral injury and COVID-19
By Omar Mahboob BMSc and Elysée Nouvet PhD
On April 25, 2020, John Mondello, a recently graduated Emergency Medical Technician stationed in New York City, died by suicide. Mondello was on the front lines of the COVID-19 response as the city faced an overwhelming number of cases and fatalities. Prior to passing, Mondello had described experiencing anxiety to his friends and colleagues, which he attributed to the high call volume, and the witnessing of so much death (1).
As many countries begin re-opening from their lockdowns, and cases are once again projected to rise, it is imperative to understand the experiences of front-line workers providing care. Over the past month, a team of researchers from Western University, the University of Turin, and McMaster University have been speaking with individuals on the front lines of the pandemic response across the globe. The larger purpose of the study is to: elucidate plans for and concerns related to the provision of care to patients at risk of dying, should critical care needs outweigh available resources; to discern if and how such triage guidance should be communicated to affected populations; and, identify key social and cultural considerations for this communication and for the provision of care to the critically ill during this pandemic. Although we are in the primary stages of our analysis, and it is too early to make decisive statements on our findings, one thing is clear: many of the participants have described their own stress or expressed concerns regarding the psychological impact associated with being on the front lines during this pandemic.
Even from the relative comfort of our homes, it is not difficult to imagine why that would be the case. With so many patients in need, hours have been longer than usual for many healthcare workers. The atmosphere is tense as stakes are high: for patients, for providers, for healthcare facilities, for governments and communities. In high-income countries, most have never witnessed so many deaths in such a short time period. Watching patients come in, grow sicker, and in some cases even die without family present feels bad. Personal protective equipment is limited in many contexts. This means that with every shift comes a risk of infection, and passing on that infection to loved ones at home (or sacrificing time with family to limit their exposure and keep them safe). Countless news reports, especially out of Italy in March of this year, and then New York City in April, have recounted the heavy and sometimes psychologically shattering decisions faced by front line providers confronting critical care resource shortages. The need to decide or implement decisions that involve denying potentially life-saving interventions to some patients is not an experience many have faced in our study, but it is one they can imagine and dread. Patient prioritization decision-making, where needs outweigh resources, presents a particular risk of moral injury.
Moral injury is a term defined by Litz et al. (2009) as an experience that encompasses the following: “[p]erpetrating, failing to prevent, bearing witness to, or learning about acts that transgress deeply held moral beliefs and expectations” (2). Although the term was first applied in a military context, extending its use to this pandemic can provide valuable insight into the potential concerns embedded within triage decision-making processes.
In a healthcare setting, this suggests that those involved in or witness to the prioritization of certain patients for treatment, to the exclusion of others whom they believe could benefit, are at an increased risk of moral injury. Allocation of limited resources, such as nursing staff and ICU-care for COVID-19 patients, has been and continues to be a reality in many localities. For critically ill patients, access to immediate medical attention and/or ventilator care can be the difference between life and death. Although some organizations and experts have released guidance on who has priority for a ventilator if and when the need surpasses capacity (3), guidance does not release healthcare teams at the bedside from the burden of ultimate decision-making and action. Beyond the bedside, there is the impact on the patient and their family. The moral implications and potentially injurious consequences of making or being a party to such decisions is a reality for many health care workers on the front lines of this crisis. A May 13 2020 WHO report on the mental health impacts of COVID-19 cites studies in Canada, China, and Pakistan confirming increased self-reported depression, anxiety, insomnia, and psychological needs (4).
Across the globe, communities are showing their appreciation for health care workers on the front lines. Through the blaring of horns, the clapping and banging of pots and pans, the message is unmistakable; many are willing to stand with and for those who are risking their lives on the front lines. These gestures are important; however, they are not enough. Understanding how the provision of care during this pandemic affects different health care providers and investing in ongoing psychological support must also be prioritized.
References:
- Edelman S, Moore T, Narizhnaya K, Balsamini D. EMT John Mondello kills himself after less than three months on the job [Internet]. New York Post. 2020 [cited 2020 May 20]. Available from: https://nypost.com/2020/04/25/nyc-emt-commits-suicide-with-gun-belonging-to-his-dad/
- Litz BT, Stein N, Delaney E, Lebowitz L, Nash WP, Silva C, et al. Moral injury and moral repair in war veterans: A preliminary model and intervention strategy. Clinical Psychology Review. 2009 Dec;29(8):695–706.
- Emanuel EJ, Persad G, Upshur R, Thome B, Parker M, Glickman A, et al. Fair Allocation of Scarce Medical Resources in the Time of Covid-19. N Engl J Med [Internet]. 2020 Mar 23 [cited 2020 May 20]; Available from: https://doi.org/10.1056/NEJMsb2005114
- United Nations. Policy Brief: COVID-19 and the Need for Action on Mental Health [Internet]. 2020. Available from: https://www.un.org/sites/un2.un.org/files/un_policy_brief-covid_and_mental_health_final.pdf
Omar Mahboob completed a BMSc in Interdisciplinary Medical Sciences from the Schulich School of Medicine and Dentistry at Western University. He is a research assistant with the Humanitarian Health Ethics research group.
Dr. Elysée Nouvet is a medical anthropologist and assistant professor in the School of Health Studies at the University of Western Ontario, Canada. She has a particular interest in the moral experiences and ethics of care and research in humanitarian and public health emergencies.
