title: Understanding the impacts of natural disasters (including COVID-19) on end-of-life care through the experiences of healthcare professionals, dying patients and relatives
Creators: name: Kelly, Marguerite
Publisher: name: The Australian National University
Year: 2023

description: Death is inescapable and will affect us all indirectly and directly during our lives. End-of-life is a critical period for the dying person, their family, friends, carers and for society. Research suggests that at end-of-life, people desire to be in the presence of family or friends, pain-free and retaining dignity through respectful care and support. However, during disasters, existing inequalities and vulnerabilities are exacerbated for the dying and their families. Instead, they may encounter: limited access to healthcare services, medical equipment, and medications; evacuation; uncertainty over place of death; and the prospect of dying alone. Natural disasters include climatological (e.g., fire), meteorological (e.g., storm), geophysical (e.g., earthquake), hydrological (e.g., flood) and biological (e.g., pandemic) disasters. Although natural disasters are becoming more frequent and severe, limited research exists exploring their impacts on end-of-life care. The aim of this thesis is to expand understandings of the impacts of natural disasters on end-of-life care through triangulation of three diverse data sources: 1) empirical published research studies; 2) in-depth interviews with healthcare professionals providing end-of-life care; and 3) in-depth interviews with end-of-life care service users (patients and relatives). The findings of this research extend understandings of the multilayered ways in which natural disasters disrupt provision of quality holistic and compassionate end-of-life care and key features of a 'good death'. The systematic review, in synthesising nearly two decades of empirical research, describes end-of-life care impacts for service provision, service providers and service users, and demonstrates a strong departure from the palliative care philosophy. The second study develops existing knowledge and theory by demonstrating how natural disasters impede provision of the human elements of care, and care in partnership with relatives and friends, as central to Watson's human caring theory, contributing to healthcare professionals' sense that: "I can't make all this work". The third study comprises two papers/chapters within this thesis. Chapter 5 extends knowledge of dying patients' and bereaved relatives' experiences of COVID-19 visiting restrictions, identifying ethical challenges and implications, and provides strategies to facilitate physical presence. Chapter 6 builds on knowledge and theory by demonstrating how COVID-19 restrictions interrupt usual social processes and supports for grief and bereavement, hampering bereaved relatives' ability to undertake important grief tasks outlined in Worden's task-oriented grief model. This thesis demonstrates the complex layers of disadvantage created by natural disasters for those at end-of-life and their families. The findings illustrate how the historical philosophical tensions between mainstream medical practice and palliative care ideals are magnified in natural disasters. For dying patients, bereaved relatives, and healthcare professionals, social contexts, and the recognition of death, dying and grief as an important social and cultural occasion, were central to their understandings of end-of-life care. However, structures and healthcare systems were experienced as working against provision of effective holistic end-of-life care. The findings demonstrate the need for a critical society-wide re-conceptualisation of end-of-life care within disasters. Coordinated and collaborative efforts are needed among healthcare professionals, dying patients and their relatives, healthcare systems, governments, policymakers, humanitarian agencies, ethicists, and researchers to ensure a respectful and dignified end-of-life, focused on improved quality of life and relief of suffering for patients and families within disasters. This thesis concludes with recommendations to inform end-of-life care planning, practice, and policy in future disasters and pandemics.