Elysée Nouvet

Palliative care in humanitarian crises: always something to offer

Richard A. Powell MSc, Director, MWAPO Health Development Group, Nairobi, Kenya Lisa Schwartz PhD, Arnold L. Johnson Chair in Health Care Ethics, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada Elysée Nouvet PhD, Post-Doctoral Fellow in Humanitarian Healthcare Ethics, Department of Clinical Epidemiology & Biostatistics, McMaster University, Hamilton, Ontario, Canada Brett Sutton MBBS, Public Health Registrar, Burnet Institute, Melbourne, Australia Mila Petrova PhD, Research Associate, Primary Care Unit, Department of Public Health and Primary Care, University of Cambridge, Cambridge, UK Joan Marston B Soc Sc, International consultant for childrens palliative care, Assagay, South Africa Daniel Munday PhD, Consultant in Palliative Medicine and Health Services Research, International Nepal Fellowship, Kathmandu, Nepal

A Research Agenda for Humanitarian Health Ethics

This paper maps key research questions for humanitarian health ethics: the ethical dimensions of healthcare provision and public health activities during international responses to situations of humanitarian crisis. Development of this research agenda was initiated at the Humanitarian Health Ethics Forum (HHE Forum) convened in Hamilton, Canada in November 2012. The HHE Forum identified priority avenues for advancing policy and practice for ethics in humanitarian health action. The main topic areas examined were: experiences and perceptions of humanitarian health ethics; training and professional development initiatives for humanitarian health ethics; ethics support for humanitarian health workers; impact of policies and project structures on humanitarian health ethics; and theoretical frameworks and ethics lenses. Key research questions for each topic area are presented, as well as proposed strategies for advancing this research agenda. Pursuing the research agenda will help strengthen the ethical foundations of humanitarian health action.

Looking good but doing harm? Perceptions of short-term medical missions in Nicaragua

ABSTRACT In this paper, we present findings from a qualitative study that gathered Nicaraguans’ perceptions of short-term foreign medical missions, towards deepening the understanding of what Nicaraguans value or find limited in the work of such foreign missions operating in their country. Fifty-two interviews were conducted with patients, relatives of patients, Nicaraguan physicians and nurses who partnered with or observed missions at work, ‘beneficiary’ community leaders, and individuals who were unable or unwilling to access mission-provided healthcare. Factors underlying participants’ positive and more critical accounts of foreign primary and surgical missions are described and analysed. Empirical investigation on how, whether or not, or on what bases short-term medical missions (STMs) have been perceived as beneficial, harmful, or otherwise by those on the receiving end of these efforts is limited. This study aims to contribute to the evidence base for reflecting on the ethical performance of trans-national STMs.

Waiting for the body to fail: limits to end-of-life communication in Canadian hospitals

Abstract High-quality patient-centred care for hospitalised patients at the end of life requires health care teams to engage patients and families in communication and decision-making about goals of care. In the absence of such engagement, patient preferences may not be reflected in their care, and patients may be subjected to unwanted life-sustaining technologies such as mechanical ventilation and cardiopulmonary resuscitation. The DECIDE (DECIsion-making about goals of care for seriously ill, hospitalised medical patients) study was conducted with the aims of identifying barriers and ideas for improving end-of-life communication and decision-making with seriously ill patients in Canadian hospitals. Its qualitative component involved interviews with 30 physicians and nurses asking them to recall and describe hospital-based goals of care communication and decision-making incidents that had gone ‘well’ or ‘unwell’. This article explores a dominant pattern in participants’ accounts, which is a norm of waiting to initiate end-of-life discussions until seriously ill patients are within days or even hours of death. Attending to clinicians’ explanations of when and why goals of care discussions are routinely delayed provides opportunity to clarify and critically consider important and normally unarticulated rationales underlying end-of-life discussion practices between health care teams and patients/families in Canadian hospitals.

Opportunities, limits and challenges of perceptions studies for humanitarian contexts

ABSTRACT This article aims to advance understanding and discussion of perceptions studies as a method for strengthening humanitarian performance. Perceptions studies are qualitative studies produced for and often by humanitarian organisations, based on analysis of local perceptions of humanitarian efforts. While these studies are normatively asserted as valuable within the humanitarian sector, there has been no synthesis to date of their potential and limitations. This critical review of 59 perceptions-related documents responds to that gap, outlining key assertions of the value added and challenges of using perceptions studies in humanitarian work. While the objective is to inform and strengthen future use of this method, the perceptions literature also points to significant tension between this qualitative method and dominant expectations in humanitarian monitoring and evaluation.

Moral sentiments in Aidland: Aid and development as moral experience:

This short article introduces the special section “Morality in Aidland,” which brings together three articles exploring the work of moral sentiments in social actors’ understandings of and engagements with local, national, and international aid and development practices.

Extra-ordinary aid and its shadows: The work of gratitude in Nicaraguan humanitarian healthcare

Nicaragua has the lowest per capita spending on health in Central America. Public clinics lack medications for chronic disease management; many citizens obtain prescriptions but cannot afford to get these filled; poorly equipped and under-staffed operating theatres function part-time while waiting lists swell. This is the context within which dozens of international healthcare missions travel to Nicaragua every year to provide surgical and primary care to the country’s poor. This article is based on research conducted in 2013 on Nicaraguan encounters with and moral framings of foreign surgical and primary care missions working in their communities. It draws on critical humanitarian studies and queer affect theory in attending to and analyzing references to gratitude within these accounts, asking what local and trans-national relations Nicaraguan narratives of gratitude toward medical aid help form, limit, and enable.

Factors influencing communication and decision-making about life-sustaining technology during serious illness: a qualitative study

Objectives We aimed to identify factors influencing communication and decision-making, and to learn how physicians and nurses view their roles in deciding about the use of life-sustaining technology for seriously ill hospitalised patients and their families. Design The qualitative study used Flanagans critical incident technique to guide interpretive description of open-ended in-depth individual interviews. Setting Participants were recruited from the medical wards at 3 Canadian hospitals. Participants Interviews were completed with 30 healthcare professionals (9 staff physicians, 9 residents and 12 nurses; aged 25–63 years; 73% female) involved in decisions about the care of seriously ill hospitalised patients and their families. Measures Participants described encounters with patients and families in which communication and decision-making about life-sustaining technology went particularly well and unwell (ie, critical incidents). We further explored their roles, context and challenges. Analysis proceeded using constant comparative methods to form themes independently and with the interprofessional research team. Results We identified several key factors that influenced communication and decision-making about life-sustaining technology. The overarching factor was how those involved in such communication and decision-making (healthcare providers, patients and families) conceptualised the goals of medical practice. Additional key factors related to how preferences and decision-making were shaped through relationships, particularly how people worked toward ‘making sense of the situation’, how physicians and nurses approached the inherent and systemic tensions in achieving consensus with families, and how physicians and nurses conducted professional work within teams. Participants described incidents in which these key factors interacted in dynamic and unpredictable ways to influence decision-making for any particular patient and family. Conclusions A focus on more meaningful and productive dialogue with patients and families by (and between) each member of the healthcare team may improve decisions about life-sustaining technology. Work is needed to acknowledge and support the non-curative role of healthcare and build capacity for the interprofessional team to engage in effective decision-making discussions.

Barriers to supportive care during the Ebola virus disease outbreak in West Africa: Results of a qualitative study

Background During the 2013–2016 West Africa Ebola outbreak, supportive care was the only non-experimental treatment option for patients with Ebola virus disease (EVD). However, providing care that would otherwise be routine for most clinical settings in the context of a highly contagious and lethal pathogen is much more challenging. The objective of this study was to document and deepen understanding of barriers to provision of supportive care in Ebola treatment units (ETUs) as perceived by those involved in care delivery during the outbreak. Methods This qualitative study consisted of 29 in-depth semi-structured interviews with stakeholders (decision-makers, physicians, nurses) involved in patient care delivery during the outbreak. Analysis consisted of interview debriefing and team-based transcript coding in NVivo10 software using thematic analysis. Findings Participants emphasized three interconnected barriers to providing high-quality supportive care during the outbreak: 1) lack of material and human resources in ETUs; 2) ETU organizational structure limiting the provision of supportive clinical care; and 3) delayed and poorly coordinated policies limiting the effectiveness of global and national responses. Participants also noted the ethical complexities of defining and enacting best clinical practices in low-income countries. They noted tension between, on one hand, scaling up minimal care and investing in clinical care preparedness to a level sustainable in West Africa and, on the other, providing a higher level of supportive care, which in low-resource health systems would require important investments. Conclusion Our findings identified potentially modifiable barriers to the delivery of supportive care to patients with EVD in West Africa. Addressing these in the inter-outbreak period will be useful to improve patient care and outcomes during inevitable future outbreaks. Promoting community trust and engagement through long-term capacity building of the healthcare workforce and infrastructure would increase both health system resilience and ability to handle other outbreaks of emerging diseases.

Ethics and Palliative Care During International Humanitarian Action

the health care needs of refugees and asylum seekers. In the first instance, the work-group addressed five priority conditions. Results: The collection “Health of Refugees and Asylum Seekers in Europe”was published onDecember 2, 2016, hosting curated resources from the Cochrane Library and other research outputs, categorized into guidelines; systematic reviews; articles; and other information. Conclusion: Since publication, the refugee health collection, found on the website EvidenceAid.org, has received almost 600 page views, ranking it third amongst most viewed pages after the homepage and the resources tab for that period. On average, users have been spending 2.30 minutes on the page, suggesting the content is commanding attention. We will continue to encourage an evidence-based response to this crisis, and will report on usage of both collections at the conference.