Objective: The purpose of this work was to record the current practice of restricting ongoing intensive care in severely ill newborns.
Methods: This was a prospective observational study over a 30-month period of consecutive newborns for whom restriction of ongoing intensive care was taken into consideration, discussed, or decided on. A standardized form recorded patients' medical condition, the type of restriction decided on, parents' wishes, and their information level. The research was conducted in a neonatal unit of a level III university children's hospital, with no interventions.
Results: Forty patients were enrolled, 25 were preterm, 21 had either a genetic defect or an inborn malformation. Restriction of ongoing intensive care was decided on for 32 patients with a great variety of specified recommendations. Thirty-six patients died during the observation period. In general, parents were well informed; however, their wishes concerning restriction of ongoing intensive care were unknown in approximately 25% of cases.
Conclusions: The decision-making process for restriction of ongoing intensive care is well established, but the role of parents needs to be defined.
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