Additional family and hired support among informal caregivers with medication management responsibilities for patients near the end of life: A pilot survey

OBJECTIVE: Informal caregivers may seek additional support with complex responsibilities, including medication management, when caring for patients near the end-of-life. This study characterizes caregivers who have family/privately-hired support while caring for home hospice patients. METHODS: Telephone surveys were conducted with a convenience sample of caregivers who had medication responsibilities for patients from 5 Chicago-based hospices. RESULTS: Of 120 respondents, most were daughters or spouses, female and White. Respondents' mean age was 60 and the mean number of years respondents have assisted the patient with medications was 4.1. About 17% reported having no additional support with patient care, 45% having family support, 26% privately-hired support, and 13% both family/hired support. With medication responsibilities, 40% received no additional support, 31% received family support, 23% hired support, and 8% both. Among respondents with family support, 26% reported experiencing family disagreements with hospice treatment plan; 20% of respondents with privately-hired support experienced disagreements from their hired assistance. Respondents with family support tended to be older, less educated, and less burdened than respondents without such support. Respondents with hired support tended to have greater education, higher income, and greater burden than others without hired support. Furthermore, respondents with hired support to manage medications tended to report poorer relationship quality with the patient. DISCUSSION: A sizable proportion of caregivers of hospice patients receive additional support, including for medication responsibilities. Hospice providers may need to address disagreements among caregivers' family/hired support concerning treatment plans. Having privately-hired support may reflect other concerns that providers may need to address.