Dying Alone: Understanding and Addressing End-of-Life Isolation Among Older Adults
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PROJECT ABSTRACT Dying alone is a feared outcome among older adults across the United States, and an increasingly common occurrence affecting nearly 1 in 5 deaths. The consequences of dying alone or social isolation at the end of life are profound. Isolated older adults report up to twice the symptom burden, including depression, loneliness, and pain; often must navigate overwhelming medical logistics alone; and are less likely to enroll in hospice and more likely to use acute care like the emergency department. During health crises common to the end of life (i.e. new cancer diagnoses, hospitalizations, sudden debilitating symptoms), they may have few confidantes or health care agents to guide decision making, and have difficulty returning home after hospitalizations due to a lack of caregivers, leading to loss of independence in the community. Despite the magnitude of the clinical and public health need, key knowledge gaps impede solutions. Prior quantitative work has been largely focused on the months and weeks before death. In reality, end-of-life isolation develops over many years or decades through behavioral choices, shifts in social relationships, and key health events. Understanding longitudinal trajectories leading to end-of-life isolation can inform clinical and public health interventions. In addition, the lived experience of socially isolated, seriously ill older adults is poorly understood. Prior studies are limited to small, community-based samples and have focused unique scenarios (e.g. isolated older adults lacking deci- sional capacity, social restrictions during the COVID-19 pandemic). Missing from published literature are how older adults manage complex care needs of serious illness on their own, and the perspectives of clinicians from different care settings (community, hospital, nursing home, hospice) who struggle to care for this popula- tion. The overall objective of this proposal is therefore to develop a comprehensive understanding of the expe- rience of “dying alone” and to use this knowledge to identify clinical recommendations and intervention strate- gies. We will use a convergent, parallel mixed-methods design that leverages the nationally representative Health and Retirement Study (HRS) linked to Medicare claims data and rigorous qualitative methods. We have the following aims: 1) Identify distinct trajectories leading to end-of-life social isolation and their relationship to health outcomes; 2) Understand how socially isolated older adults experience serious illness at the end of life and multi-level barriers and facilitators to care; and 3) Develop consensus clinical recommendations and iden- tify priority components for future interventions for isolated older adults at the end of life through a synthesis of findings and a modified Delphi Panel. This research is critical to meeting the needs of older adults who are dy- ing alone, a large and highly marginalized population. Because these topics are vastly understudied, we antici- pate that this work will open a new line of research on isolation at the end of life, including proposals to test new interventions for high-risk groups, evaluate policy levers, and design pragmatic trials that integrate social and clinical care in serious illness and palliative settings.
