The underrepresentation of palliative care in global guidelines for responding to infectious disease outbreaks: a systematic narrative review.

BACKGROUND: The importance of palliative care provision has been highlighted in previous humanitarian emergencies. This review aimed to examine the breadth and depth of palliative care inclusion within global guidelines for responding to infectious disease outbreaks. METHODS: The review was conducted using the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines. Electronic searches of MEDLINE, Embase, Cumulative Index to Nursing and Allied Health, PsychInfo and grey literature were performed. Inclusion criteria were guidelines (recommendations for clinical practice or public health policy) for responding to infectious disease outbreaks in the general adult population. Results were limited to the English language, between 1 January 2010 and 17 August 2020. Analysis of the included articles involved assessing the breadth (number of palliative care domains covered) and depth (detail with which the domains were addressed) of palliative care inclusion. RESULTS: A total of 584 articles were retrieved and 43 met the inclusion criteria. Two additional articles were identified through handsearching. There was limited inclusion of palliative care in the guidelines examined. CONCLUSIONS: There is an opportunity for the development of guidelines that include information on palliative care implementation in the context of infectious disease outbreaks in order to reduce the suffering of key vulnerable populations worldwide.

Global Palliative Care Education in the Time of COVID-19.

The coronavirus disease 2019 (COVID-19) pandemic has highlighted the need for health care providers skilled in rapid and flexible decision making, effective and anticipatory leadership, and in dealing with trauma and moral distress. Palliative care (PC) workers have been an essential part of the COVID-19 response in advising on goals of care, symptom management and difficult decision making, and in supporting distressed health care workers, patients, and families. We describe Global Palliative Education Collaborative (GPEC), a training partnership between Harvard, University of California San Francisco, and Tulane medical schools in the U.S.; and two international PC programs in Uganda and India. GPEC offers U.S.-based PC fellows participation in an international elective to learn about resource-limited PC provision, gain perspective on global challenges to caring for patients at the end of life, and cultivate resiliency. International PC colleagues have much to teach about practicing compassionate PC amidst resource constraints and humanitarian crisis. We also describe a novel educational project that our GPEC faculty and fellows are participating in-the Resilience Inspiration Storytelling Empathy Project-and discuss positive outcomes of the project.

Dying individuals and suffering populations: applying a population-level bioethics lens to palliative care in humanitarian contexts: before, during and after the COVID-19 pandemic.

BACKGROUND: Humanitarian crises and emergencies, events often marked by high mortality, have until recently excluded palliative care-a specialty focusing on supporting people with serious or terminal illness or those nearing death. In the COVID-19 pandemic, palliative care has received unprecedented levels of societal attention. Unfortunately, this has not been enough to prevent patients dying alone, relatives not being able to say goodbye and palliative care being used instead of intensive care due to resource limitations. Yet global guidance was available. In 2018, the WHO released a guide on 'Integrating palliative care and symptom relief into the response to humanitarian emergencies and crises'-the first guidance on the topic by an international body. AIMS: This paper argues that while a landmark document, the WHO guide took a narrowly clinical bioethics perspective and missed crucial moral dilemmas. We argue for adding a population-level bioethics lens, which draws forth complex moral dilemmas arising from the fact that groups having differential innate and acquired resources in the context of social and historical determinants of health. We discuss dilemmas concerning: limitations of material and human resources; patient prioritisation; euthanasia; and legacy inequalities, discrimination and power imbalances. IMPLICATIONS: In parts of the world where opportunity for preparation still exists, and as countries emerge from COVID-19, planners must consider care for the dying. Immediate steps to support better resolutions to ethical dilemmas of the provision of palliative care in humanitarian and emergency contexts will require honest debate; concerted research effort; and international, national and local ethical guidance.

Illness-related suffering and need for palliative care in Rohingya refugees and caregivers in Bangladesh: A cross-sectional study.

BACKGROUND: Despite recognition that palliative care is an essential component of any humanitarian response, serious illness-related suffering continues to be pervasive in these settings. There is very limited evidence about the need for palliative care and symptom relief to guide the implementation of programs to alleviate the burden of serious illness-related suffering in these settings. A basic package of essential medications and supplies can provide pain relief and palliative care; however, the practical availability of these items has not been assessed. This study aimed to describe the illness-related suffering and need for palliative care in Rohingya refugees and caregivers in Bangladesh. METHODS AND FINDINGS: Between November 20 and 24, 2017, we conducted a cross-sectional study of individuals with serious health problems (n = 156, 53% male) and caregivers (n = 155, 69% female) living in Rohingya refugee camps in Bangladesh, using convenience sampling to recruit participants at the community level (i.e., going house to house to identify eligible individuals). The serious health problems, recent healthcare experiences, need for medications and medical supplies, and basic needs of participants were explored through interviews with trained Rohingya community members, using an interview guide that had been piloted with Rohingya individuals to ensure it reflected the specificities of their refugee experience and culture. The most common diagnoses were significant physical disabilities (n = 100, 64.1%), treatment-resistant tuberculosis (TB) (n = 32, 20.5%), cancer (n = 15, 9.6%), and HIV infection (n = 3, 1.9%). Many individuals with serious health problems were experiencing significant pain (62%, n = 96), and pain treatments were largely ineffective (70%, n = 58). The average age was 44.8 years (range 2-100 years) for those with serious health problems and 34.9 years (range 8-75 years) for caregivers. Caregivers reported providing an average of 13.8 hours of care per day. Sleep difficulties (87.1%, n = 108), lack of appetite (58.1%, n = 72), and lack of pleasure in life (53.2%, n = 66) were the most commonly reported problems related to the caregiving role. The main limitations of this study were the use of convenience sampling and closed-ended interview questioning. CONCLUSIONS: In this study we found that many individuals with serious health problems experienced significant physical, emotional, and social suffering due to a lack of access to pain and symptom relief and other essential components of palliative care. Humanitarian responses should develop and incorporate palliative care and symptom relief strategies that address the needs of all people with serious illness-related suffering and their caregivers.