Grant: Randomized Controlled Trials

A growing number of older Canadians develop diseases that gradually erode their decision-making abilities. Healthcare professionals and researchers typically turn to families when decisions about health care and research participation must be made on behalf of an incapacitated patient or prospective subject. Yet numerous studies have shown that family determinations of older adult preferences for health care and willingness to engage in research can be very inaccurate. Advance planning is a process aimed at helping people clarify and communicate their values, beliefs and preferences for future care and research involvement in the event of impaired decisional capacity. The process yields advance directives which may or not be formally expressed in writing. This study will assess the efficacy of a multimodal advance planning intervention in 1) improving the accuracy of substitute decision-making, and 2) increasing the frequency of written advance directives for health care and research. Subjects are community-dwelling frail adults aged 75 and over who agree to designate the person whom they would choose to make decisions for them in the event of future cognitive impairment. Elderly-proxy dyads allocated to the experimental group will meet a specially trained facilitator who will stimulate discussion within dyads about the elderly's goals of care and willingness to engage in research in the event of incapacity. Dyads will also attend a group information session on the uses, purposes and limitations of advance directives. Efficacy of the study intervention will be determined by repeated assessments of prediction accuracy and post-intervention rates of written directives. If effective, the intervention could contribute to alleviating the burden of substitute decision-making by guiding loved ones toward decisions similar to those their impaired relatives would have made, had they still been able to do so.