Beyond Averages: Informal Caregiving Intensity at End-of-Life for Home Deaths

Policy and health system changes have encouraged a shift towards home deaths at End-of-Life (EOL), with important implications for informal caregiving. We provide updated estimates of EOL informal caregiving with a focus on home deaths. We conducted secondary data analysis of 11 waves (2002-2022) of Health and Retirement Study (HRS) proxy exit interviews of decedents aged ≥65 (N = 8,298). We employed two-part models and quantile regression methods to examine how home deaths affect informal caregiving. Multivariate logistic regression examined associations between informal caregiving and symptom management. Decedents dying at home received more hours of informal caregiving per day than those dying in institutions with stronger associations post 2010. Quantile regression showed differential association of home deaths across different quantiles of informal caregiving. There was no association between informal caregiving intensity and symptom management. Findings suggest increasing dependence on under-resourced informal caregiving in the context of shifting EOL care patterns.