Informal caregivers' experiences and opinions on medication management for home hospice patients: Preliminary survey results

OBJECTIVES: Medication management is an important responsibility for informal caregivers of patients receiving end-of-life care at home. This study provides preliminary results on caregivers' experiences with hospice medication management. METHODS: Telephone surveys were conducted with a convenient sample of 30 informal caregivers who managed medications for patients from 5 Chicago-based hospices. RESULTS: Among 30 caregivers (50% daughters, 30% spouses, 20% others), 80% were female and 83% White. On average, the age of caregivers were 58 years, had cared for the patient for 6 years, and currently managed 6 medications. Of all caregivers, 19 (19/30=63%) believed that giving a short-acting pain medication when their patient was already taking a long-acting one would lead to an overdose. While 15 caregivers (15/30=50%) had patients taking opioids, the same number (15/30=50%) believed that morphine was addictive and should be rarely used. Twelve caregivers (12/30=40%) reported having missed at least one scheduled medication dose. Of 22 caregivers (22/30=73%) who cared for a cognitively-intact patient, 17 (17/22=77%) would actively give medications as prescribed even if the patient refused medications; 6 caregivers (6/22=27%) had experienced patient's refusal. Twenty-five caregivers (25/30=83%) had multiple family members caring for the patient. Of them, 8 (8/25=32%) had family disagreement over the treatment plan. Of 8 (8/30=27%) employing privately-hired caregivers, 2 (2/8=25%) had a hired caregiver disagreed with hospice-prescribed medications; however, none of the 8 would ask hospice for guidance to resolve the disagreement. CONCLUSION: Our preliminary findings highlight concerns that hospice providers may address when assisting informal caregivers with medication management.