Changes in prognostic awareness among seriously ill older persons and their caregivers

J Palliat Med. 2006 Feb;9(1):61-9. doi: 10.1089/jpm.2006.9.61.


Purpose: To examine changes in patients' and caregivers' understanding of prognosis with progression of the patient's illness.

Subjects and 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.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't
  • Research Support, U.S. Gov't, Non-P.H.S.

MeSH terms

  • Aged
  • Attitude to Death*
  • Awareness*
  • Caregivers / psychology*
  • Chi-Square Distribution
  • Female
  • Heart Failure / psychology*
  • Humans
  • Life Expectancy*
  • Male
  • Middle Aged
  • Neoplasms / psychology*
  • Prognosis
  • Pulmonary Disease, Chronic Obstructive / psychology*