Informal caregivers' experiences and opinions on managing medications for patients receiving end-of-life care in private residences

OBJECTIVES: Little is known about informal caregivers' experiences with managing medications for patients near the end-of-life. This descriptive study quantifies caregivers' experiences and opinions on managing medications for hospice patients. METHODS: Telephone surveys were conducted with a convenience sample of 120 informal caregivers who managed medications for patients from 5 Chicago-based hospices. RESULTS: Among respondents, 44% were daughters, 32% spouses, 83% female, and 73% White. The average respondent was a 60 year-old person managing 7.4 medications and had already assisted the patient with medications for 4.1 years. Of all respondents, 59% believed that giving a short-acting pain medication when the patient was already taking a long-acting one would lead to an overdose. About 37% reported having missed at least one scheduled medication dose, and 44% believed that opioids were addictive and should be rarely used. Among those respondents (56%=67/120) who had patients taking opioids, 51% (34/67) reported that stool softeners should only be given after the patient develops constipation. Of those respondents (66%=79/120) who cared for a cognitively-intact patient, 71% (56/79) would actively give medications as prescribed even if the patient refused medications; in fact, 29% (23/79) had experienced patient's refusal. Among those respondents (58%=69/120) who had other family members helped care for the patient, 67% (46/69) had family members helped give medications and 26% (18/69) reported having family disagreements over patient's treatment plan. CONCLUSION: Our findings highlight some of the key concerns that hospice providers may need to address when assisting informal caregivers with medication management.