How should clinicians describe hospice to patients and families?

OBJECTIVES: To describe hospice enrollment from the perspective of bereaved family members and to identify information about hospice that would encourage patients and families to enroll sooner.
DESIGN: Cross-sectional interviews.
SETTING: Three Medicare-certified hospice organizations. PARTICIPANTS: One hundred family members of 100 patients who died in hospice. MEASUREMENTS: Semistructured interviews assessed prior knowledge of hospice, patients' and physicians' involvement in the enrollment process, features of hospice that motivated enrollment, and features that patients and families wished they had learned about sooner.
RESULTS: Almost all family members (n=92) and patients (n=71) knew about hospice before the patient's illness. Almost half the patients (n=44) were not involved at all in the hospice enrollment decision. The patient's physician (n=51) or the patient or family (n=34) initiated most hospice discussions, but patients and families usually obtained information about hospice from a hospice representative (n=75) rather than from the patient's physician (n=22). Family members identified several kinds of information about hospice that were particularly helpful in deciding whether to enroll and described several aspects of hospice that they wished they had known about sooner.
CONCLUSION: Many patients and families learn about hospice from someone other than the patient's physician, and most learn about valuable hospice features and services only after enrollment. By providing more information about hospice earlier in the illness course, clinicians may be able to facilitate more-informed and more-timely decisions about hospice enrollment.