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A. A. Eduard Verhagen, MD, JD, PhD; Jozef H. H. M. Dorscheidt, JD, PhD; Bernadette Engels, RN; Joep H. Hubben, JD, PhD; Pieter J. Sauer, MD, PhD

Arch Pediatr Adolesc Med. 2009;163(10):895-901. doi:10.1001/archpediatrics.2009.166

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.

Author Affiliations: Department of Pediatrics (Drs Verhagen and Sauer and Ms Engels) and Department of Health Sciences, Section of Health Law (Drs Dorscheidt and Hubben), University Medical Centre Groningen, Groningen, the Netherlands.

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