Symptom Management Experience of End-of-Life Family Caregivers: A Population-Based Study

Context. In the United States, 30% of all deaths occur at home. Effective symptom management is integral to quality end-of -life (EOL) care. Family caregivers play a major role in EOL symptom management. Recent federal policies emphasize the need to improve training and support for family caregivers. Objectives. In a nationally representative sample: 1) Characterize the population of caregivers assisting with and reporting difficulty in symptom management at the end of life; and 2) Assess caregiver and care recipient characteristics associated with caregiver report of difficulty. Methods. Cross-sectional analysis of data from the National Health and Aging Trends Study and National Study of Caregiv-ing. Multivariable logistic regression to assess association between care recipient and caregiver characteristics and caregiver report of difficulty. Results. Caregivers (n = 214) were mean age 57.1 years, 74% female, and 86% white non-Hispanic. Over 2 million family caregivers provided assistance with symptom management in the last month of life in 2017; 78% reported difficulty. Non -His-panic Black caregivers (aOR 0.24, 95% CI 0.08-0.75), Hispanic caregivers (0.13, 0.03-0.56), and caregivers with lower than high school education (0.26, 0.11-0.63) were less likely to report difficulty. Caregivers of care recipients who received paid care (3.37, 1.30-8.69) were more likely to report difficulty. Receipt of training and support services (1.80, 0.83-3.93) and hospice (1.83, 0.82-4.07) were not associated with caregiver report of difficulty. Conclusion. These findings underscore the need to improve training and support for family caregivers in EOL symptom management. J Pain Symptom Manage 2022;64:513-520. (c) 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.