Quality palliative care in humanitarian crises in low- and middle-income country context

Abstract

INTRODUCTION: Providing quality palliative care within challenging humanitarian settings is a critical and complex endeavor, which has been overlooked and poorly invested in. This thesis seeks to understand the multifaceted dimensions of palliative care delivery within such contexts, shedding light on challenges, exploring strategies, and uncovering the transformative journeys of healthcare workers. It was carried out during the COVID-19 pandemic providing additional complexity, but adding to its value, as global shocks are likely to increase rather than decrease.

While palliative care has been identified as an essential health service under Universal Health Coverage (SDG3), the literature addressing its need and delivery especially in areas of conflict and fragility remains limited. Surprisingly, the quality of palliative care within such settings had not been hitherto assessed. This thesis specifically seeks to make visible the intricacies of delivering palliative care within a specific humanitarian environment with the case studies focused on the experience of the Rohingya Community living in Cox’s Bazar, Bangladesh.

AIMS & OBJECTIVES: The overarching aim of the thesis is to identify the nature of palliative care in humanitarian settings and assess the quality of such services using the World Health Organization's established quality of care domains as a metric. It explores whether new quality indicators have emerged from complex humanitarian situations, particularly in the context of the COVID-19 pandemic. It sets out to address gaps in knowledge related to patient needs, cares quality, compassion within palliative care, and healthcare worker preparedness in humanitarian crises in order to provide a comprehensive understanding of the challenges and advantages of delivering high-quality palliative care within constrained healthcare settings, with specific emphasis on the pandemic's implications.

METHODS: Employing an exploratory convergent mixed-methods case study approach, the thesis utilized individual semi-structured interviews, participant observation, field notes and documentary analysis for data collection. Ethical approval was obtained. Ethical integrity was maintained through adherence to the 'Quality Framework for Mixed Methods Research'. The initial scoping review assessed existing knowledge on palliative care in fragile, conflict, and violence-affected (FCV) environments. Ethnographic observations and semi-structured interviews explored the experiences of healthcare workers delivering palliative care during the COVID-19 pandemic.

RESULTS: Findings emanated from diverse data sources. Fifty interviews, 23 event episodes with 256 hours of participant observations were conducted, 30 field notes and 22 documents were also included. In conflict-affected environments, the emphasis on palliative care quality indicators underscores the importance of prioritizing people-centeredness, effectiveness, timeliness, and equity. Reflective analysis of a cross-sectional survey involving 311 participants provided specific context, helped to reveal longitudinal perspective to the studies related to patients and their caregivers challenges among the Rohingya refugees and provided insights into their palliative care needs, and their access to essential medical supplies.

The theoretical model, titled "The Journey Towards Engagement in Palliative Care," offered a framework for comprehending how FHCWs embarked on the process of caring for patients with incurable conditions and how this involvement evolved into a profound emotional and social commitment. It was proposed that this commitment, which was multifaceted and centered on alleviating suffering while promoting high-quality care, could be best characterized as compassion.

Semi-structured interviews unveiled healthcare workers' pandemic journey, culminating in the "Navigating Self-Preparedness Through Pandemic" theory. This theory specifically addresses care integration evolved with FHCWs' understanding of the pandemic, personal growth, and commitment to their roles. It shifted from a focus on physical health to a holistic approach considering emotional, psychological, and social dimensions of care. The emotional journey and self-preparedness facilitated compassionate and effective care responsive to pandemic challenges in a humanitarian setting.

DISCUSSION: The first among the two exploratory cases examined the quality of palliative care practices and compassion carried out by frontline healthcare workers (FHCWs) operating in a limited humanitarian palliative care setting, partly during the pandemic. Participant observations highlighted healthcare workers' adaptability and compassionate communication.

The focus of the second study was on examining the self-preparedness of FHCWs for providing quality care during the pandemic in Rohingya refugee camps. This was achieved through the application of constructivist grounded theory and mixed methods to comprehend palliative care provision in Cox's Bazar both before and during the pandemic, with a specific emphasis on exploring the challenges encountered by health workers in the face of health system shocks.

Through comprehensive data analysis and synthesis, the thesis presents recommendations for strengthening palliative care in humanitarian settings and pandemic responses. By adding self-preparedness as a quality indicator, the research can inform clinical leaders, educators, humanitarians, and policymakers, and offers novel insights into care quality within limited palliative care provision in refugee camps.

The study's recommendations include identifying patient, caregiver, and healthcare provider needs through allocating time and space to understand challenges, engaging with the need for self-preparedness, fostering compassionate connections, and advocating for all stakeholders. The research underscores the importance of understanding diverse patient needs, integrating compassion, and incorporating palliative care principles into healthcare practice. It reveals the interconnectedness of physical, emotional, and psychosocial aspects within care delivery. Healthcare workers' resilience shone amidst adversity, showcasing palliative care as a symbol of compassion and strength. The findings of the thesis show the importance of enhanced palliative care quality, and reiterate its pivotal role in providing compassionate healthcare, even amid challenging scenarios. The study provides a roadmap for enhancing palliative care provision, advocating a human-centric approach that acknowledges the unseen dedication of healthcare providers.

CONCLUSION: The multidimensional findings and the theory generated from them offer a holistic perspective of palliative care within humanitarian settings. They underscore the significance of people-centeredness, effective interventions, equitable access, and compassion's transformative power. The findings while emerging from a specific context and at a specific time appear to have global significance resonating with WHO policy and the need to elevate palliative care delivery in challenging environments.