Structural Racism and Engagement of Family Caregivers in Serious Illness Care

PROJECT SUMMARY Serious illness is a condition that carries a high risk of mortality and either negatively impacts a person’s daily function or excessively strains their caregivers. Serious illness affects an estimated 12 million US adults. Structural racism and racial/ethnic residential segregation may affect serious illness outcomes by 1. limiting access to palliative care, the specialty focused on improving quality of life for persons with serious illness and their families and 2. limiting the capacity of family caregivers to engage with the healthcare system. Caregivers are critical for this population because they assist with complex decision making, care coordination and patient advocacy. Structural racism refers to the totality of ways in which societies foster racial discrimination through mutually reinforcing systems (such as housing, education, employment, and healthcare) that ultimately affect health outcomes. Such institutions include healthcare systems, whose internal cultures may affect care delivery and patient outcomes differentially by race and ethnicity. Few studies have attempted to highlight racism’s impact on caregivers. To address this gap, we propose a population-based, multi-level, mixed-methods study within and across the state of Massachusetts, a diverse state with large limited-resource communities and a population that includes ~30% persons of color (POC). Focusing on a single state allows for in-depth investigation across communities that vary in racial composition and resources, as well as across hospital systems that vary in terms of size, profit status and academic affiliation. In Aim 1 we propose a quantitative analysis that will describe neighborhood-level burden of serious illness, access to hospital-based palliative care, availability of caregiver resources, and their impact on individual-level health outcomes. Data from the All Payer Claims Database will characterize neighborhood-level rates of serious illness and access to palliative care (travel time), and individual- level health care utilization (hospitalization, palliative care use, length of stay, ICU stay) and health outcomes (in-hospital death). Mediation analysis with linked data on neighborhood-level caregiver-related resources from the American Community Survey will identify the effect of neighborhood-level caregiver resources on outcomes. We hypothesize that poorer access to care, measured as longer travel time to hospitals, will more negatively affect POC from neighborhoods with fewer caregiver resources. In Aim 2 we conduct qualitative case studies of hospitals to characterize how hospital cultures support or constrain caregiver engagement for persons with serious illness from different POC communities. We will conduct n=8 in-depth case studies to characterize institutional cultures of caregiver engagement. In Aim 3 we convene community, content, and policy experts to synthesize quantitative and qualitative results to produce culturally appropriate hospital recommendations and actionable policy solutions to improve equity in caregiver engagement for serious illness. Disentangling the relationships between segregation, neighborhood deprivation, and healthcare utilization in serious illness will help us show that racism, not mistrust, is a primary barrier to equitable care and health outcomes.