Complexity of medication responsibilities among informal caregivers of home hospice patients

OBJECTIVE: Managing medications is an important, yet complex, responsibility of informal caregivers who help alleviate suffering among patients near the end-of-life. This study quantifies the complexity of medications that caregivers are responsible for managing for home hospice patients. METHODS: Computer-assisted telephone surveys were conducted with a convenience sample of 120 caregivers who managed medications for patients receiving care from 5 Chicago-based hospices. RESULTS: Among respondents (44% daughters, 32% spouses, 24% others), the average age was 60. About 73% were White and 21% had managed medications for the patient for 6+ years. Most patients' primary diagnoses were cancer (34%), end-stage dementia (27%), or failure to thrive (12%). The average number of medications that respondents were managing was 7.4 (+/-3.7), with 76% of respondents managing 5+ medications. The average Medication Regimen Complexity Index was 21.7 (+/-11). The average number of therapeutic classes managed was 5 per respondent, with the most common being analgesics, gastrointestinal agents, cardiovascular agents, benzodiazepines, and antidepressants. About 93% of respondents managed medications in pill/tablet/capsule forms, 64% liquid medicine, and 20% medicated patches. Approximately 80% managed at least one “as needed” medication and 33% managed “regularly scheduled” medications that had to be given at least 4 times daily. The most common special medication instruction was “must give at specified times (e.g. at night or 8AM).” DISCUSSION: Informal caregivers of hospice patients assume responsibility for cumbersome medication regimens. The impact of this toll on caregivers' performance on medication management and their psycho-emotional health (e.g., stress and burden) needs further investigation.