van der Heide A, van der Maas P J, van der Wal G, Kollée L A, de Leeuw R, Holl R A
Department of Public Health, Erasmus University, Rotterdam, The Netherlands.
Pediatrics. 1998 Mar;101(3 Pt 1):413-8. doi: 10.1542/peds.101.3.413.
End-of-life decisions for newborn infants are usually made with the consent of parents as well as physicians, but may occasionally involve disagreement about which decision is in the best interest of the child. Our study was aimed at providing an empirical background for the ethical discussion on the parent's versus the physician's role in decision-making.
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 prolong life and the most recent cases in which such decisions were not made because either the parents or the physician objected were comprehensively discussed.
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-life 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 diagnosis in 21%. Pediatricians afterwards often expressed feelings of discontent about situations in which there had been disagreement with parents.
The opinion of parents about which medical decision is in the best interest of their child is for pediatricians only decisive in case it invokes the continuation of treatment. The principle of preserving life is abandoned only when the physician feels sufficiently sure that the parents agree that such a course of action is in the best interest of the child.
新生儿临终决策通常在父母及医生同意的情况下做出，但偶尔可能会在何种决策最符合患儿利益的问题上存在分歧。我们的研究旨在为关于父母与医生在决策中角色的伦理讨论提供实证背景。
我们对儿科医生进行了分层抽样的面对面访谈。回复率为99%。全面讨论了最近关于新生儿加速死亡或不延长生命的决策，以及最近因父母或医生反对而未做出此类决策的案例。
加速死亡或不延长生命的决策通常是在与父母讨论后做出的，在已知父母不同意的情况下不会做出。因父母不同意而未做出临终决策的情况主要涉及患有早产并发症（24%）或围产期窒息（40%）的婴儿，而父母要求做出临终决策但儿科医生未同意的情况中，唐氏综合征作为主要诊断的占43%，作为并发诊断的占21%。之后，儿科医生常常对与父母存在分歧的情况表达不满情绪。
对于儿科医生而言，只有当父母关于何种医疗决策最符合其孩子利益的意见要求继续治疗时才具有决定性作用。只有当医生确信父母同意这种行动方案最符合孩子利益时，才会放弃生命维持原则。
