THE ROLE OF PARENTS IN END-OF-LIFE DECISIONS IN NEONATOLOGY - PHYSICIANS VIEWS AND PRACTICES

Objective. End-of-life decisions for newborn infants are usually made with the consent of parents as well as physicians, but may occasionall y involve disagreement about which decision is in the best interest of the child. Our study was aimed at providing an empirical background f or the ethical discussion on the parent's versus the physician's role in decision-making. Methods. We conducted face-to-face interviews with a stratified sample of pediatricians. The response rate was 99%. The most recent decisions in newborn infants to hasten death or not prolon g life and the most recent cases in which such decisions were not made because either the parents or the physician objected were comprehensi vely discussed. Results. Decisions to hasten death or not prolong life were usually made after discussing it with parents and did not occur while parents were known to disagree. Situations in which an end-of-li fe decision was not made because parents did not consent predominantly involved infants with complications of prematurity (24%) or perinatal asphyxia (40%), whereas situations in which parents requested an end- of-life decision that was not acceded to by the pediatrician involved Down syndrome as the main diagnosis in 43% and as a concurrent diagnos is in 21%. Pediatricians afterwards often expressed feelings of discon tent about situations in which there had been disagreement with parent s. Conclusions. The opinion of parents about which medical decision is in the best interest of their child is for pediatricians only decisiv e in case it invokes the continuation of treatment. The principle of p reserving life is abandoned only when the physician feels sufficiently sure that the parents agree that such a course of action is in the be st interest of the child.