Making difficult decisions about hospice enrollment: What do patients and families want to know?

OBJECTIVES: To define patients' and families' priorities for information about hospice. DESIGN: Cross-sectional interview. SETTING: Urban, not-for-profit, Medicare-certified hospice. PARTICIPANTS: Patients and families recruited from consecutive hospice information visits. MEASUREMENTS: Understanding of hospice, assessment of the relative importance of eight categories of information (by direct rating and ranking tasks), and nurse observation of shared decision making between patient and family (5-point scale). RESULTS: Interviews were conducted with 237 patients and families at a hospice information visit. Forty percent (n = 94) said that they knew anything about hospice. Most often, family members made the enrollment decision (n = 132, 57%). Of the eight categories of information, patients and families placed the greatest importance on visit frequency (n = 143, 60%), payment for hospice (n = 140, 59%), and the practical help that hospice provides (n = 123, 52%). Principal component factor analysis reduced the categories to three distinct factors reflecting concerns related to impending death, practical support, and changes from established patterns of care. CONCLUSION: Most patients and families who are referred for a hospice information visit know little about hospice and have substantial information needs. Referring physicians and hospice teams may be able to better support hospice enrollment decisions by anticipating common priorities for information.