Patient Preferences in Instructional Advance Directives

Abstract

Instructional advance directives (ADs) are traditionally written to apply in terminal illness. As such, they do not readily capture patient preferences for care in acute and chronic illness. To test whether patients prefer a modified AD that includes preferences to limit life-sustaining therapy (LST) for critical illness and advanced dementia over a traditional AD. A convenience sample of medically stable, hospitalized general medical patients were presented a traditional AD (the recommended Illinois statutory living will that limits LST in terminal illness) and a modified AD. The modified AD presents four conditional options: (1) to limit LST in terminal illness, (2) to limit LST in critical illness to a reasonable trial, (3) to refuse LST in advanced dementia (described in lay language), and (4) to refuse artificial hydration and nutrition (AHN) in advanced dementia. The primary outcome was the preferred AD to present to patients. Secondary outcomes included the AD choice of those who executed an AD and the options chosen by those executing the modified AD. Seventy-two patients completed the survey. Eighty-six percent (95% confidence interval [CI], 76%-93%), preferred that the modified AD be presented to patients over the traditional AD. Twenty-one patients chose to execute an AD. Eighteen (86%; 95% CI, 64%-97%), executed the modified AD. Twelve executed all four options. Traditional instructional ADs fail to capture important patient preferences. Future research should further validate these preferences and explore whether including these specific options in ADs can improve their efficacy.