The stability of preferences for life-sustaining care among persons with AIDS in the Boston health study

Background. Clinicians recognize the importance of eliciting patient prefer ences for life-sustaining care, yet little is known about the stability of those preferences for patients with serious disease. Objectives. To examine the stability of preferences for life-sustaining care among persons with A IDS and to assess factors associated with changes in preferences. Design. T wo patient surveys and medical record reviews, administered four months apa rt in 1990-1991. Setting. Three health care settings in Boston. Patients. 2 52 of 505 eligible persons with AIDS who participated in both baseline and follow-up surveys. Main outcome measures. A single question assessing desir e for cardiac resuscitation and a scale of preferences for life-extending t reatment conditional on hypothetical health states. Results. Approximately one-fourth of the respondents changed their minds about life-sustaining car e during a four-month period. Of patients who initially desired cardiac res uscitation, 23% decided to forego it four months later, and of those who in itially said they would decline care, 34% later said they would accept it. Of those who initially desired any of the life-extending treatments, 25% de cided to forego them four months later, and of those who initially said the y would decline life-extending care, 24% later said they would accept some treatment. Patients reporting changes in physical function, pain, or suicid e ideation were more likely to modify their desires to be resuscitated (all p less than or equal to 0.05). Patients lacking an advance directive, not completing high school, or becoming more severely ill were more likely to c hange their preferences on the Life Extension scale (p less than or equal t o 0.05). Patients who discussed their preferences with at least one physici an were just as likely as others to change desires for cardiac resuscitatio n. Age, gender, race, emotional health, clinical severity, social support, and site of care were not significant correlates of change for either measu re. Conclusions. Health care providers should periodically reassess prefere nces for life-sustaining care, particularly for patients with progressive d isease, given the instability in patient preferences. However, predictors o f instability may vary with how preferences are measured. In particular, ch anges in health status may be related to instability of preferences for cer tain types of treatments.