Decision making and satisfaction with care in the pediatric intensive care unit: findings from a controlled clinical trial.

T he provision of intensive care to a critically ill child often requires ongoing decision making about the appropriate course and goals of care. Parents’ unfulfilled expectations about the outcome of their child’s illness are inherently difficult feelings to transcend, especially when the illness leads to significant morbidity or death. Such circumstances present a heightened potential for conflicts between clinicians and parents. Significant disagreements can have consequences for the management of the patient including diminished trust in the clinical team, paralysis in decision making, dissatisfaction with care, and litigation. For clinicians, conflicts with families can result in feelings of frustration, anger, loss of control, and career dissatisfaction. To prevent the unraveling of trust and effective decision making in the pediatric intensive care unit, ethicists and policymakers have suggested that clinicians must redouble efforts to improve communication and engage in shared decision making with parents. Yet clinicians find little guidance from the literature on interventions targeted to decision-making processes in pediatric critical care. Although the pediatric critical care literature contains reports of observational studies documenting the frequency of decisions to forgo life-sustaining treatments (1–5) or describing the attitudes of pediatric critical care physicians and nurses (6, 7), little is known about satisfaction and decision making among pediatric intensive care unit (PICU) families, and no trials of clinical interventions to improve satisfaction or facilitate decision making about life-sustaining treatment have been conducted. We hypothesized that an intervention that actively screens for cases at high risk for conflict in the PICU, coupled with procedures to tailor a specific response to identified problems, would have the greatest chance of improving deliberative decision making and increasing satisfaction with care. We anticipated that the intervention would increase rates of explicit decisions by PICU families to limit life-sustaining treatments, but also recognized the possibility that critically ill patients and their families may desire more aggressive care than the conventional wisdom among clinicians would suggest (8). The intervention was designed to be neutral between these options.