Addressing obstacles to the inclusion of palliative care in humanitarian health projects: a qualitative study of humanitarian health professionals’ and policy makers’ perceptions

© 2020, The Author(s). Background: Humanitarian non-governmental organizations provide assistance to communities affected by war, disaster and epidemic. A primary focus of healthcare provision by these organizations is saving lives; however, curative care will not be sufficient, appropriate, or available for some patients. In these instances, palliative care approaches to ease suffering and promote dignity are needed. Though several recent initiatives have increased the probability of palliative care being included in humanitarian healthcare response, palliative care remains minimally integrated in humanitarian health projects. Methods: We conducted a qualitative study using interpretive description methodology to investigate humanitarian policy-makers’ and health care professionals’ experiences and perceptions of palliative care during humanitarian crises. In this article, we report on the analysis of in-depth interviews with 24 participants related to their perceptions of obstacles to providing palliative care in humanitarian crises, and opportunities for overcoming these obstacles. Among the participants, 23 had experience as humanitarian health professionals, and 12 had experience with policy development and organizational decision-making. Results: 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. Conclusion: 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

The Ethics of Humanitarian Innovation: Mapping Values Statements and Engaging with Value-Sensitive Design

The humanitarian sector continually faces organizational and operational challenges to respond to the needs of populations affected by war, disaster, displacement, and health emergencies. With the goal of improving the effectiveness and efficiency of response efforts, humanitarian innovation initiatives seek to develop, test, and scale a variety of novel and adapted practices, products, and systems. The innovation process raises important ethical considerations, such as appropriately engaging crisis-affected populations in defining problems and identifying potential solutions, mitigating risks, ensuring accountability, sharing benefits fairly, and managing expectations. This paper aims to contribute to knowledge and practice regarding humanitarian innovation ethics and presents two components related to a value-sensitive approach to humanitarian innovation. First is a mapping of how ethical concepts are mobilized in values statements that have been produced by a diverse set of organizations involved in humanitarian innovation. Analyzing these documents, we identified six primary values (do-no-harm, autonomy, justice, accountability, sustainability, and inclusivity) around which we grouped 12 secondary values and 10 associated concepts. Second are two proposed activities that teams engaged in humanitarian innovation can employ to foreground values as they develop and refine their project’s design, and to anticipate and plan for challenges in enacting these values across the phases of their project. A deliberate and tangible approach to engaging with values within humanitarian innovation design can help to ground humanitarian innovation in ethical commitments by increasing shared understanding amongst team members, promoting attentiveness to values across the stages of innovation, and fostering capacities to anticipate and respond to ethically challenging situations

A case analysis of partnered research on palliative care for refugees in Jordan and Rwanda

© 2021, The Author(s). Background: This case analysis describes dilemmas and challenges of ethical partnering encountered in the process of conducting a research study that explored moral and practical dimensions of palliative care in humanitarian crisis settings. Two contexts are the focus of this case analysis: Jordan, an acute conflict-induced refugee situation, and Rwanda, a protracted conflict-induced refugee setting. The study’s main goal was to better understand ways humanitarian organizations and health care providers might best support ethically and contextually appropriate palliative care in humanitarian contexts. An unintended outcome of the research was learning lessons about ethical dimensions of transnational research partnerships, which is the focus of this case analysis. Discussion: There exist ongoing challenges for international collaborative research in humanitarian conflict-induced settings. Research partnerships were crucial for connecting with key stakeholders associated with the full study (e.g., refugees with life limiting illness, local healthcare providers, aid organization representatives). While important relationships were established, obstacles limited our abilities to fully attain the type of mutual partnership we aimed for. Unique challenges faced during the research included: (a) building, nurturing and sustaining respectful and equitable research partnerships between collaborators in contexts of cultural difference and global inequality; (b) appropriate ethics review and challenges of responding to local decision-maker’s research needs; and (c) equity and fairness towards vulnerable populations. Research strategies were adapted and applied to respond to these challenges with a specific focus on (d) research rewards and restitution. Conclusions: This case analysis sheds light on the importance of understanding cultural norms in all research roles, building relationships with decision makers, and developing teams that include researchers from within humanitarian crisis settings to ensure that mutually beneficial research outcomes are ethical as well as culturally and contextually relevant

Moral experiences of humanitarian health professionals caring for patients who are dying or likely to die in a humanitarian crisis

Abstract Wars, disasters, and epidemics affect millions of individuals every year. International non-governmental organizations respond to many of these crises and provide healthcare in settings ranging from a field hospital deployed after an earthquake, to a health clinic in a longstanding refugee camp, to a treatment center during an infectious disease outbreak. The primary focus of these activities is to save lives. However, inevitably, many patients cannot be saved. We undertook an interpretive description study to investigate humanitarian policy-maker and care providers’ experiences and perceptions of palliative care during humanitarian crises. In this paper, we report on interviews with 23 health professionals, 11 of whom also had experience as policy-makers within a humanitarian organization. We use the concept of moral experience as an analytic lens: participants’ experiences of values that they held to be important being realized or thwarted as they responded to the needs of patients who were dying or likely to die. We identified five themes related to participants’ moral experiences, all of which relate to values of compassion in the provision of care, and justice in accessing it. (1) Participants described intervening to ease the suffering of dying patients as an inherent aspect of humanitarianism and their duty as health professionals. (2) Participants also expressed that upholding dignity was of critical importance, stemming from a recognition of shared humanity and as an act of respect. (3) Since humanitarian action is provided in situations of scarcity, prioritization is inescapable. Acknowledging the primacy of curative care in emergencies, participants also emphasized the importance of ensuring that care for the dying was attended to, including during triage. (4) Participants reported working within and pushing against systemic constraints such as legal or logistical barriers to opioids, lack of guidelines, and conflicting views with colleagues. (5) Given the stakes involved, participants felt a heavy weight of responsibility and described their challenges in carrying it. These findings illuminate experiences responding to patients who are dying or likely to die, and how these connect with the values of humanitarian health professionals, sometimes resulting in dissonance between values and actions. They also point to the need to make more space for palliative, alongside curative, approaches to care in situations of humanitarian crises, ideally by further integrating them

International Emergency Medical Teams, A Working Group on Training

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Palliative care in humanitarian crises: a review of the literature

Abstract This paper presents findings from a systematic review of the literature (2005–2017) on palliative care in humanitarian crises (e.g., disasters, armed conflicts, epidemics). This review set out to describe palliative care needs, practices, barriers, and recommendations in humanitarian crisis settings. It contributes to current discussions within the field of humanitarian healthcare aimed at clarifying whether or not and how best to respond to palliative care needs in humanitarian crises. Analysis of 95 peer-reviewed and gray literature documents reveal a scarcity of data on palliative care needs and interventions provided in crises, challenges of care provision particularly due to inadequate pain relief resources and guidelines, a lack of consensus on the ethics of providing or limiting palliative care as part of humanitarian healthcare response, and the importance of contextually appropriate care. These findings suggest that more research and open discussion on palliative care in humanitarian crises are needed. This review contributes to defining palliative care needs in humanitarian crises, building consensus on humanitarian healthcare organizations’ ethical responsibilities towards individuals and families with palliative needs, and developing realistic and context-appropriate policies and guidelines