Toward Shared Decision Making at the End of Life in Intensive Care Units

BACKGROUND: In North America, families generally wish to be involved in end-of-life decisions when the patient cannot participate, yet little is known about the extent to which shared decision making occurs in intensive care units. METHODS: We audiotaped 51 physician-family conferences about major end-of-life treatment decisions at 4 hospitals from August 1, 2000, to July 31, 2002. We measured shared decision making using a previously validated instrument to assess the following 10 elements: discussing the nature of the decision, describing treatment alternatives, discussing the pros and cons of the choices, discussing uncertainty, assessing family understanding, eliciting patient values and preferences, discussing the family's role in decision making, assessing the need for input from others, exploring the context of the decision, and eliciting the family's opinion about the treatment decision. We used a mixed-effects regression model to determine predictors of shared decision making and to evaluate whether higher levels of shared decision making were associated with greater family satisfaction. RESULTS: Only 2% (1/51) of decisions met all 10 criteria for shared decision making. The most frequently addressed elements were the nature of the decision (100%) and the context of the decision to be made (92%). The least frequently addressed elements were the family's role in decision making (31%) and an assessment of the family's understanding of the decision (25%). In multivariate analysis, lower family educational level was associated with less shared decision making (partial correlation coefficient, 0.34; standardized beta, .3; P = .02). Higher levels of shared decision making were associated with greater family satisfaction with communication (partial correlation coefficient, 0.15; standardized beta, .09; P = .03). CONCLUSIONS: Shared decision making about end-of-life treatment choices was often incomplete, especially among less educated families. Higher levels of shared decision making were associated with greater family satisfaction. Shared decision making may be an important area for quality improvement in intensive care units.