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 preferences for life-sustaining care, yet little is known about the stability of those preferences for pa tients with serious disease. Objectives. To examine the stability of preferences for life- sustaining care among persons with AIDS and to assess factors associated with changes in preferences. Design. Two patient surveys and medical record reviews, administered four months apart in 1990-1991. Setting. Three health care settings in Boston. Patients. 252 of 505 eligible persons with AIDS who participated in both base line and follow-up surveys. Main outcome measures. A single question assessing de sire for cardiac resuscitation and a scale of preferences for life-extending treatment conditional on hypothetical health states. Results. Approximately one-fourth of the re spondents changed their minds about life-sustaining care during a four-month period. Of patients who initially desired cardiac resuscitation, 23% decided to forego it four months later, and of those who initially said they would decline care, 34% later said they would accept it. Of those who initially desired any of the life-extending treatments, 25% decided to forego them four months later, and of those who initially said they would decline life-extending care, 24% later said they would accept some treatment. Patients reporting changes in physical function, pain, or suicide ideation were more likely to modify their desires to be resuscitated (all p ≤ 0.05). Patients lacking an advance directive, not completing high school, or becoming more severely ill were more likely to change their preferences on the Life Extension scale (p ≤ 0.05). Patients who discussed their preferences with at least one physician were just as likely as others to change desires for cardiac resuscitation. Age, gender, race, emotional health, clinical severity, social support, and site of care were not significant correlates of change for either measure. Conclusions. Health care providers should periodically reassess preferences for life-sustaining care, particularly for patients with progressive disease, given the instability in patient preferences. However, predictors of instability may vary with how preferences are measured. In particular, changes in health status may be related to instability of preferences for certain types of treatments. Key words: life-sustaining care; patient preferences; AIDS. (Med Decis Making 1999;19:16-26)