Abstract
BackgroundUpon admission to an intensive care unit (ICU), all patients should discuss their goals of care and express their wishes concerning life-sustaining interventions (e.g., cardiopulmonary resuscitation (CPR)). Without such discussions, interventions that prolong life at the cost of decreasing its quality may be used without appropriate guidance from patients.ObjectivesTo adapt an existing decision aid about CPR to create a wiki-based decision aid individually adapted to each patient’s risk factors; and to document the use of a wiki platform for this purpose.MethodsWe conducted three weeks of ethnographic observation in our ICU to observe intensivists and patients discussing goals of care and to identify their needs regarding decision making. We interviewed intensivists individually. Then we conducted three rounds of rapid prototyping involving 15 patients and 11 health professionals. We recorded and analyzed all discussions, interviews and comments, and collected sociodemographic data. Using a wiki, a website that allows multiple users to contribute or edit content, we adapted the decision aid accordingly and added the Good Outcome Following Attempted Resuscitation (GO-FAR) prediction rule calculator.ResultsWe added discussion of invasive mechanical ventilation. The final decision aid comprises values clarification, risks and benefits of CPR and invasive mechanical ventilation, statistics about CPR, and a synthesis section. We added the GO-FAR prediction calculator as an online adjunct to the decision aid. Although three rounds of rapid prototyping simplified the information in the decision aid, 60% (n = 3/5) of the patients involved in the last cycle still did not understand its purpose.ConclusionsWikis and user-centered design can be used to adapt decision aids to users’ needs and local contexts. Our wiki platform allows other centers to adapt our tools, reducing duplication and accelerating scale-up. Physicians need training in shared decision making skills about goals of care and in using the decision aid. A video version of the decision aid could clarify its purpose.
Highlights
Death in intensive care units (ICU) is common and most are preceded by a decision to withhold or to withdraw life-sustaining therapies [1,2,3]
Three rounds of rapid prototyping simplified the information in the decision aid, 60% (n = 3/5) of the patients involved in the last cycle still did not understand its purpose
Decision aids (DAs) can help clinicians engage in shared decision making (SDM) with their patients [12]
Summary
Death in intensive care units (ICU) is common and most are preceded by a decision to withhold or to withdraw life-sustaining therapies [1,2,3]. Upon admission to an intensive care unit (ICU), all patients should discuss their goals of care [5, 7] Without such discussions, interventions that prolong life at the cost of decreasing its quality may be used without informed guidance from patients [5,6,7,8,9]. Upon admission to an intensive care unit (ICU), all patients should discuss their goals of care and express their wishes concerning life-sustaining interventions (e.g., cardiopulmonary resuscitation (CPR)). Without such discussions, interventions that prolong life at the cost of decreasing its quality may be used without appropriate guidance from patients
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