Making difficult decisions about hospice enrollment: what do patients and families want to know?
OBJECTIVE
To define patients' and families' priorities for information about hospice.


METHODS
Cross-sectional interview.


METHODS
Urban, not-for-profit, Medicare-certified hospice.


METHODS
Patients and families recruited from consecutive hospice information visits.


METHODS
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.


CONCLUSIONS
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.
Casarett
David
D
Center for Health Equity Research and Promotion, Philadelphia Veterans Affairs Medical Center, Philadelphia, Pennsylvania, USA. casarett@mail.med.upenn.edu <casarett@mail.med.upenn.edu>
Crowley
Roxane
R
Stevenson
Carolyn
C
Xie
Sharon
S
Teno
Joan
J
D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D003657:Decision Making; D005190:Family / Q000523:psychology*; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D017051:Hospice Care; D006801:Humans; D008297:Male; D008875:Middle Aged; D010342:Patient Acceptance of Health Care / Q000523:psychology*; D010343:Patient Admission; D010353:Patient Education as Topic