Abstract
Serious illness is a high-cost, high-need condition characterized by a high risk of mortality that adversely affects individuals’ daily functioning, quality of life, and the well-being of family care partners. As the population ages, the number of individuals living with serious illness is expected to increase substantially. The intersection of population aging and serious illness represents a critical public health and health system challenge, particularly from a supply and demand perspective. As demand for care increases, the supply of those who care for individuals living with serious illness may be strained across the health care system, the workforce, and families and communities. Importantly, the process of aging is experienced unequally. This dissertation aimed to examine population-level needs for serious illness care and their implications for health equity and the health care workforce. To accomplish this goal, I conducted the following three research activities.
In Paper 1, I used a dynamic microsimulation model with a first-order Markov state-transition structure based on the Future Elderly Model, with transition probabilities estimated from the Health and Retirement Study (HRS), to project the number of U.S. adults aged ≥51 years living with serious illness by simulating individuals’ health trajectories over time. By 2052, the number of adults living with serious illness is projected to reach at least 18 million, double the number in 2022. Growth was projected to be more rapid among Hispanic/Latino/a/x and non-Hispanic Black populations compared to non-Hispanic White populations. Age-stratified analyses further indicated that these disparities remain pronounced among adults aged 51 to 64 years, where Hispanic/Latino/a/x and non-Hispanic Black populations experience substantially larger increases. Among adults aged 85 years and older, non-Hispanic White populations are projected to experience the largest absolute increase.
In Paper 2, I conducted a longitudinal population-based study using the 2006–2020 HRS, linked with the Psychosocial and Lifestyle Questionnaire, to characterize deficits in social connection among U.S. adults aged ≥51 years and examine their association with the timing of serious illness. Using a composite measure of deficits in social connection, Cox proportional hazards models with age as the time scale were used to examine associations between deficits in social connection and incident serious illness, adjusting for race/ethnicity, sex, education, household income relative to the federal poverty threshold, and urbanicity. The findings demonstrated that greater deficits in social connection were associated with earlier onset of serious illness. In Paper 3, I conducted a cross-sectional observational study using the 2022 Association of American Medical Colleges National Sample Survey of Physicians to characterize physicians’ engagement in addressing health-related social needs (HRSNs) and examine its association with burnout. The findings showed that higher engagement in addressing HRSNs was associated with higher burnout. The findings also suggest that physicians who identified as women or transgender women, those identifying as Black or African American or other racial and ethnic groups, international medical graduates, and those who frequently used non-English languages in patient communication were more likely to address HRSNs.
Altogether, the findings from this dissertation show that in the context of an aging society, population needs for serious illness care will continue to grow. If left unaddressed, disparities in how individuals experience aging and serious illness will widen, with implications for the health care workforce responding to increasingly complex medical and social needs. This dissertation generated evidence demonstrating how health inequities affect not only historically marginalized communities but also broader health care and social systems, including the health care workforce. Advancing quality and equity in serious illness care therefore requires coordinated, multilevel efforts that address population needs, reduce health inequities, and support health care workforce well-being across health care, policy, and societal systems.