OBJECTIVE: To determine patient knowledge about life-sustaining treatments and physician understanding of patient preferences for proxies
and treatments after outpatient discussions about advance directives.
DESIGN: Cross-sectional interview-based and questionnaire-based survey.
SETTING: Two university general internal medicine practices, two Department of Veterans Affairs general internal medicine practices,
and one university-based geriatrics practice, in two different cities.
PATIENTS: Fifty-six patients of primary care internists.
INTERVENTION: Physicians discussed “advance directives” (ADs) with one randomly selected patient during an outpatient visit.
MEASUREMENTS AND MAIN RESULTS: After the discussions, physicians identified the patient’s proxy and predicted the patient’s preferences for treatment in
20 scenarios. Patients provided treatment preferences in the 20 scenarios, the name of their preferred surrogate decision
maker, and their understanding of cardiopulmonary resuscitation and mechanical ventilation. Of the 39 patients who discussed
resuscitation, 43% were able to identify two important characteristics; 26% identified none; 66% did not know that most patients
need mechanical ventilation after undergoing resuscitation. None of the 43 patients who had a discussion about mechanical
ventilation had a good understanding of it; 67% did not know that patients generally cannot talk while on ventilators; 46%
expressed serious misconceptions about ventilators. There was poor agreement between physicians and their patients regarding
treatment preferences in 18 of 20 scenarios (κ −0.04 to 0.31). Physicians correctly identified the proxy 89% of the time (κ
0.78).
CONCLUSIONS: Patients leave routine AD discussions with serious misconceptions about life-sustaining treatments. Physicians are unable
to predict treatment preferences but do learn about patients’ preferences for surrogate decision makers.
Key words advance directives - patient-doctor communication - medical ethics
Drs. Tulsky and Arnold are Project on Death in American Soros Faculty Scholars. Dr. Tulsky is a Robert Wood Johnson Generalist
Physician Faculty Scholar.
Some of the results and conclusions contained in this manuscript were presented to the annual meeting of the Society of General
Internal Medicine, May 1995.
Financial support was provided in part by the R. K. Mellon Foundation, the National Institute on Aging Claude D. Pepper Older
Americans Independence Center, grant 5-P60-AG11268, VA HSR&D Service, and the John A. Hartford Foundation.