title: It is "too late" or is it? Bereaved family member perceptions of hospice referral when their family member was on hospice for seven days or less.
abstract: BACKGROUND
  Many family members of patients enrolled in hospice for less than seven days state that the hospice referral was made "at the right time."
  
  
  OBJECTIVE
  To examine bereaved family members' perceptions of the timing of hospice referral to identify aspects of the referral process that can be improved.
  
  
  METHODS
  Open-ended interviews were conducted in seven hospice programs, interviewing bereaved family members of hospice patients who died within the first week of hospice enrollment.
  
  
  RESULTS
  Of the 100 narrative interviews, 99 respondents stated that their family member was either referred "too late" (n=41) or "at the right time" (n=58) to hospice services. When families stated that referral was "at the right time," their perceptions were based on the patient having refused earlier referral (n=8), a rapid decline in the patient's condition resulting in the late referral (n=20), or a belief in all things coming together as they were meant to (n=11). In contrast, when families stated that referral was "too late," their reasons were centered on concerns with the health care providers' role in decision making (n=24), with the leading concerns being inadequate physician communication (n=7), not recognizing the patient as dying (n=11), or problematic hospice delays in referral from the nursing home or home health agency (n=4). Despite the patient refusing an earlier hospice referral, five family members believed the referral was "too late."
  
  
  CONCLUSIONS
  Whereas family members identified expected concerns with communication, more than one in three stated an earlier hospice referral was not possible.
authors.affiliation: Warren Alpert School of Medicine at Brown University, Providence, RI, USA. Joan_Teno@brown.edu
authors.forename: Joan M
authors.initials: JM
authors.lastname: Teno
authors.forename: David
authors.initials: D
authors.lastname: Casarett
authors.forename: Carol
authors.initials: C
authors.lastname: Spence
authors.forename: Stephen
authors.initials: S
authors.lastname: Connor
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D001601:Bereavement; D003258:Consumer Behavior / Q000706:statistics & numerical data*; D005190:Family; D005260:Female; D017051:Hospice Care / Q000706:statistics & numerical data*; D006801:Humans; D008297:Male; D008875:Middle Aged; D012017:Referral and Consultation / Q000706:statistics & numerical data*; D014481:United States / Q000453:epidemiology