How should clinicians describe hospice to patients and families?
OBJECTIVE
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.


METHODS
Cross-sectional interviews.


METHODS
Three Medicare-certified hospice organizations.


METHODS
One hundred family members of 100 patients who died in hospice.


METHODS
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.


CONCLUSIONS
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.
Casarett
David J
DJ
Center for Health Equity Research and Promotion at the Philadelphia Veterans Affairs Medical Center, Philadelphia, Pennsylvania, USA. casarett@mail.med.upenn.edu
Crowley
Roxane L
RL
Hirschman
Karen B
KB
D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D016009:Chi-Square Distribution; D003430:Cross-Sectional Studies; D005190:Family / Q000523:psychology*; D005260:Female; D017051:Hospice Care / Q000523:psychology*; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D010353:Patient Education as Topic; D010817:Physician-Patient Relations; D011368:Professional-Family Relations