Hospice providers' reported practices in helping informal caregivers manage medications for home hospice patients

OBJECTIVES: Informal caregivers such as family and friends provide most of the hands-on care, including medication and symptom management, for patients receiving end-of-life care at home. Many caregivers identify hospice providers as their primary source of information and support regarding medication management. This qualitative study explores the current practices used by hospice providers to help caregivers manage medications for home hospice patients. METHODS: Semi-structured, open-ended interviews were conducted with 22 providers (14 nurses, 4 physicians, and 4 social workers) from 4 Chicago-based hospice organizations. RESULTS: Nurses emphasized different educational methods used to teach caregivers about medication management and various approaches employed to evaluate and empower caregivers from observing behaviors to providing positive feedback. Social workers focused on building rapport with caregivers especially during hospice enrollment, addressing interpersonal conflicts among caregivers and patients, and mobilizing supportive resources for extra help. Physicians discussed simplifying medication regimens to assist caregivers and assessing patient health status as a means of evaluating caregivers' performance in managing medications. Collectively, we identified five domains that constituted how hospice providers helped caregivers manage medications: 1) rapport (established trust, assessed the care situation); 2) education (instructed, demonstrated); 3) empowerment (offered feedback, encouraged caregiver); 4) evaluation (observed caregiver behaviors, assessed patient status); and 5) extra professional help (provided direct assistance, acquired resources). CONCLUSION: Supporting informal caregivers in managing medications is a multi-dimensional task that requires a concerted effort from hospice nurses, physicians and social workers. Future research should investigate how common, standardized, and effective these techniques are in practice.