Family perceptions of quality of hospice care in the nursing home

Context Nursing homes (NHs) are increasingly the site of hospice care. High quality of care is dependent on successful NH-hospice collaboration. Objectives To examine bereaved family members' perceptions of NH-hospice collaborations in terms of what they believe went well or could have been improved. Methods Focus groups were conducted with bereaved family members from five diverse geographic regions, and included participants from inner city and rural settings, with oversampling of African Americans. Results A total of 28 participants (14.8% African American, mean age 61.4 years) identified three major aspects of collaboration as important to care delivery. First, most (67.9%) voiced concerns with knowing who (NH or hospice) is responsible for which aspects of patient care. Second, nearly half (42.9%) stated concern about information coordination between the NH and hospice. Finally, 67.9% of the participants mentioned the need for hospice to advocate for high-quality care rather than their having to directly do so on behalf of their family members. Conclusion The important concerns raised by bereaved family members about NH-hospice collaboration have been incorporated into the revised Family Evaluation of Hospice Care, a post-death survey used to evaluate quality of hospice care.