title: Changes in prognostic awareness among seriously ill older persons and their caregivers.
abstract: OBJECTIVE
  To examine changes in patients' and caregivers' understanding of prognosis with progression of the patient's illness.
  
  
  METHODS
  Community-dwelling persons 60 years of age and older who were seriously ill with cancer, congestive heart failure, or chronic obstructive pulmonary disease and their caregivers were interviewed every 4 months and more frequently with a decline in the patient's status for up to one year. We examined responses to, "If you had to take a guess, how long do you think that (you/the patient) might have to live?" at baseline and at the interview closest to death.
  
  
  RESULTS
  Among 218 patients, 87 died within 1 year. At their initial interview 46% were uncertain about their life expectancy (LE) and 9% believed LE was 1 year or less; at their final interview, 55% were uncertain and 17% believed LE was 1 year or less. At the caregiver's initial interview, 29% were uncertain about the patient's LE and 20% believed LE was 1 or less; at their final interview, 30% were uncertain and 34% believed LE was 1 year or less. Among those interviewed within 30 days of the patient's death, 31% of patients and 52% of caregivers believed LE was 1 year or less. Patients' estimates of the LE did not differ according to their diagnosis.
  
  
  CONCLUSIONS
  There was little change in prognostic awareness over time. Even close to death, a large proportion of patients and caregivers were uncertain about prognosis, and few believed the patient had a limited life expectancy. Whether or not patients should know their prognosis is the subject of active debate; the persistence of prognostic misperception suggests that prognostic awareness may be difficult to change.
authors.affiliation: Clinical Epidemiology Unit, West Haven Veterans Affairs Connecticut Health Care System, West Haven, Connecticut 06516, Department of Medicine, Yale University, School of Medicine, New Haven, Connecticut, USA. terri.fried@yale.edu
authors.forename: Terri R
authors.initials: TR
authors.lastname: Fried
authors.forename: Elizabeth H
authors.initials: EH
authors.lastname: Bradley
authors.forename: John
authors.initials: J
authors.lastname: O'Leary
mesh_terms: D000368:Aged; D001293:Attitude to Death; D001364:Awareness; D017028:Caregivers / Q000523:psychology*; D016009:Chi-Square Distribution; D005260:Female; D006333:Heart Failure / Q000523:psychology*; D006801:Humans; D008017:Life Expectancy; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology*; D011379:Prognosis; D029424:Pulmonary Disease, Chronic Obstructive / Q000523:psychology*