Objectives: The decision to forgo life support is frequently made in pediatric intensive care units (PICUs). A group of experts is currently preparing recommendations for guidelines concerning this decision-making process in France. We have performed a prospective study to help the experts. This study documents how children die in French PICUs and how the decision to limit life support is made.
Design: A multicenter, prospective, cross-sectional study.
Setting: Thirty-three multidisciplinary PICUs in university hospitals.
Patients: All consecutive deaths were recorded over a 4-month period. Children who died after a medical decision to forgo life-sustaining treatment were included in group 1 and children who died from other causes were included in group 1.
Main results: A total of 264 consecutive children died, 40.1% from group 1 and 59.8% from group 2. Patients of both groups were primarily admitted for acute respiratory failure (group 1, 50.8%; group 2, 52.6%). Neurologic emergencies were more frequent in patients in group 1, whereas patients with cardiovascular failures were more frequent in group 2. When there was a question of whether to pursue life-sustaining treatment, the parents' opinions were recorded in 72.1% of cases. A specific meeting was called to make this decision in 80.1% of cases. This meeting involved the medical staff in all cases. Parents were aware of the meeting in 10.7% of cases. The conclusion of the meeting was reported to the parents in 18.7% of cases and documented in the patient's medical record in 16% of cases. Experts who were not members of the PICU staff were invited to give their opinion in 62.2% of cases.
Conclusions: The decision to forgo life-sustaining treatment is frequently made for children dying in French PICUs. Guidelines must be available to help the medical staff reach this decision. Knowledge of the decision-making process in French PICUs provides the experts with information needed to elaborate such recommendations.