Uncertain Destinations: Characterizing the Role of Place in the Later-Life Experiences of Palliative Care Patients Experiencing Homelessness

Thesis (Ph.D.)--University of Washington, 2022Homelessness is a pervasive social injustice that stems from the sociopolitical construction of disposable human life. The shifting age demographics of those experiencing homelessness in the United States exposes the shortcomings and barriers within homelessness response services and safety-net healthcare to address serious illness, disability, and age-related needs. Through a partnership with the only specialty palliative care program for people experiencing homelessness in the United States, the Research, Action & Supportive Care at Later-life for Unhoused Peoples (RASCAL-UP) study aimed to (1) identify barriers to care across a spectrum of services for unhoused people facing serious illness; and (2) examine residential trajectories of unhoused patients over the course of palliative care treatment. Methods: A constructivist grounded theory approach was taken. Retrospective chart review of palliative care patients (n=75) was paired with semi-structured interviews with service providers across healthcare and homeless response systems (n=30), as well as observation of palliative care meetings (n=12). Findings: An exploratory analysis of patient charts led to the identification of a 4-category qualitative typology of residential trajectories during palliative care enrollment. The Aging & Dying in Place typology showed sustained continuity of care within supportive housing. Providers described permanent supportive housing and low-barrier temporary accommodations as optimal lodging for people experiencing both homelessness and serious illness, due to the relative privacy, autonomy, and peer and community support they offer. Some of these locations, such as Tiny Villages, offer modularity, allowing for personalized adaptations. However, increasing system strains promote burnout among staff and limit supply. There are accessibility barriers in supportive housing, emergency shelters, Single Room Occupancy sites, and hotels and challenges in partnership with health and caregiving services. The Frequent Transitions typology was developed for patients who were unable to establish continuity of care during their palliative care enrollment, moving between locations on the housing care continuum, healthcare institutions, jail, and street-based settings. In these cases, health and housing systems were not able to adequately patch together care. The third typology, Healthcare Institutions as Housing, identified a set of patient experiences characterized by long-term hospitalizations and skilled nursing utilization. Health services within homeless systems, like medical respite, were designed to assist with acute and temporary issues and faced limitations in serving people with aging-related health issues or chronic serious illness. Medical providers noted that access and admission to long-term care services were influenced by system strain and capacity, financial disincentives for taking dual-eligible (i.e., Medicare and Medicaid qualified) patients, perception and stigma of unhoused populations, and limited knowledge of harm reduction, serious mental illness, and trauma. Providers noted the pervasive ideology of punishment as a form of health motivation, and how health policy and practice is not low-barrier. The fourth typology, Housing as Palliation, illustrated a pathway in which patients secured housing later in their illness trajectory, suggesting their prognoses and symptoms activated a system of support for older, disabled, and/or seriously-ill people that isn’t available until one is deemed most-vulnerable. Discussion: This study offers an initial framework for understanding how current systems of care fall short for people facing simultaneous homelessness and serious illness, and opportunities to address housing and health service gaps. Potential advances in closing the gap between health and housing services include incentivized interdisciplinary, cross-system education, training, and consultation that focuses on both homelessness and palliative care, as well as mobile health and low-barrier housing interventions that attend to chronic and high medical acuity. Researchers can contribute implementation science tools to measure and translate the innovative aging and health programming and services emerging in the spaces where housing care continuum, healthcare, government aging and disability services, and community mutual aid intersect