Family caregiver satisfaction with care at end of life: Report from the cultural variations study (CVAS)

Abstract

The objective of this study was to examine differences in family caregiver satisfaction with care at end of life based on site of death, in an observational study involving advanced cancer patients and their family caregivers. The study was based on follow-up interviews with 28 family caregivers of 28 patients who died during a two-year prospective study involving 68 patients and 68 family caregivers. Telephone interviews addressed the circumstances of the patients’ death, their satisfaction with the care provided to the patient, and their satisfaction with how well they were attended to by health providers. There were no associations between site of death (died at home vs. did not die at home) and family caregiver satisfaction with the overall care provided to the patient. However, family caregivers of patients who died at home responded that they thought the patient was more at peace (with respect to spiritual and religious matters) than did family care-givers of patients who did not die at home (p = 0.003). Family caregivers of patients who died at home appeared to feel less satisfied with the attention paid to their own wishes regarding the patient’s care (p = 0.13), less satisfied with the emotional support provided to them by healthcare personnel taking care of the patient (p = 0.08), and less satisfied with communication from health providers (p = 0.11). Findings indicate that although dying at home appears to provide a more peaceful death for the patient, it may also distance family care-givers from health professionals and leave them feeling less supported during the patient’s last days of life.