title: Making difficult decisions about hospice enrollment: what do patients and families want to know?
abstract: 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.
authors.affiliation: 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>
authors.forename: David
authors.initials: D
authors.lastname: Casarett
authors.forename: Roxane
authors.initials: R
authors.lastname: Crowley
authors.forename: Carolyn
authors.initials: C
authors.lastname: Stevenson
authors.forename: Sharon
authors.initials: S
authors.lastname: Xie
authors.forename: Joan
authors.initials: J
authors.lastname: Teno
mesh_terms: 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