Objective: To clarify the practice of end-of-life decision making in severely ill newborns.
Design: Retrospective descriptive study with face-to-face interviews.
Setting: The 10 neonatal intensive care units in the Netherlands from October 2005 to September 2006.
Patients: All 367 newborn infants who died in the first 2 months of life in Dutch neonatal intensive care units. Adequate documentation was available in 359 deaths.
Outcome measures: Presence of end-of-life decisions, classification of deaths in 3 groups, and physicians' considerations leading to end-of-life decisions.
Results: An end-of-life decision preceded death in 95% of cases, and in 5% treatment was continued until death. Of all of the deaths, 58% were classified as having no chance of survival and 42% were stabilized newborns with poor prognoses. Withdrawal of life-sustaining therapy was the main mode of death in both groups. One case of deliberate ending of life was found. In 92% of newborns with poor prognoses, end-of-life decisions were based on patients' future quality of life and mainly concerned future suffering. Considerations regarding the infant's present state were made in 44% of infants.
Conclusions: Virtually all deaths in Dutch neonatal intensive care units are preceded by the decision to withdraw life-sustaining treatment and many decisions are based on future quality of life. The decision to deliberately end the life of a newborn may occur less frequently than was previously assumed.