OBJECTIVE. Decisions regarding end-of-life care in critically ill newborns in the Netherlands have received considerable criticism from the media and from the public. This might be because of a lack of proper information and knowledge. Our purpose was to provide detailed information about how and when the implementation of end-of-life decisions, which are based on quality-of-life considerations, takes place.
METHODS. We reviewed the charts of all infants who died within the first 2 months of life at 2 university hospitals in the Netherlands from January to July 2005 and extracted all relevant information about the end-of-life decisions. We interviewed the responsible neonatologists about the end-of-life decisions and the underlying quality-of-life considerations and about the process of implementation.
RESULTS. Of a total of 30 deaths, 28 were attributable to withholding or withdrawing life-sustaining treatment. In 18 of 28 cases, the infant had no chance to survive; in 10 cases, the final decision was based on the poor prognosis of the infant. In 6 patients, 2 successive different end-of-life decisions were made. The arguments that most frequently were used to conclude that quality of life was deemed poor were predicted suffering and predicted inability of verbal and nonverbal communication. Implementation consisted of discontinuation of ventilatory support and alleviation of pain and symptoms. Neuromuscular blockers were added shortly before death in 5 cases to prevent gasping, mostly on parental request.
CONCLUSIONS. The majority of deaths were attributable to withholding or withdrawing treatment. In most cases, the newborn had no chance to survive and prolonging of treatment could not be justified. In the remaining cases, withholding or withdrawing treatment was based on quality-of-life considerations, mostly the predicted suffering and predicted inability of verbal and nonverbal communication. Potentially life-shortening medication played a minor role as a cause of death.