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

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.