Hospice approaches to help informal caregivers manage medications for home hospice patients: A pilot survey in Chicagoland

OBJECTIVE: Hospice providers need to ensure that informal caregivers can effectively manage medications to alleviate distressing symptoms in patients near the end-of-life. This study characterizes and quantifies hospice clinical approaches to helping caregivers manage medications for patients receiving end-of-life care in private residence. METHODS: Surveys were administered to a convenience sample of 98 hospice providers (74 nurses, 6 physicians, 11 social workers, 7 chaplains) from 5 Chicago-based agencies. RESULTS: About 67% of respondents rated ensuring proper medication management as “most important” in providing hospice care. One in three reported very frequently/frequently encountering caregivers with problems managing medications. To determine if caregivers had problems managing medications, most respondents used retrospective assessment approaches after a problem with medication management has occurred (e.g., identifying problems with medication management by observing a sudden decline in patient health). To help caregivers manage medications, most respondents reported using teaching methods to improve knowledge and skills (e.g., supplement with simplified instructions), supporting/modifying caregiving processes (e.g., pre-fill pill boxes), and consoling caregivers to improve their emotional state/attitudes toward medications (e.g., address fear concerning opioids). About 28% had very frequently/frequently encountered difficulty teaching/assisting caregivers in managing medications. As much as 46% of respondents believed that they would benefit “to a great extent” from receiving some additional resources on ways to help caregivers manage medications. DISCUSSION: Supporting caregivers in medication management is considered important and yet challenging to hospice providers. Additional resources may be needed to help providers more consistently and effectively teach, assist, and assess caregivers in managing medications.