Abstract

Neonatology is a branch of paediatrics dealing with extremely ill or premature babies, and the neonatal intensive care unit (NICU) is frequently the setting for life-and-death decisions. Society considers parents to be the proper persons to make those decisions for their babies, but in practice they seem to be allowed to do this only as long as they agree with medical recommendations; otherwise, the “best interest standard” is proposed. My objective is to evaluate decision-making in the NICU. Part I of this research, a descriptive study, compares decision-making by parents, doctors, and nurses when presented with hypothetical scenarios. Part II, through in-depth interviews, evaluates factors important to parents in making life-and-death decisions. Part III, using structured interviews, explores the neonatologists' perceptions of the limits of parental decision-making authority.

The results reveal that parents make different decisions from those of doctors and nurses. Parents have an equal commitment to intensive care (35–40%) with either mental or physical handicap. Doctors and nurses, on the other hand, have less commitment to intensive care with severe mental handicap (10%), but more commitment with physical handicap (90%). Religious commitment and experience with handicap influence decisions by parents, but not by doctors and nurses. The right of parents to decide for their baby and the interests of the family are also more important for parents than for doctors and nurses. For parents, furthermore, the important factors are an honest, caring, transparent relationship with good communication with their neonatologist; being fully informed; their values and beliefs; their roles and their sense of loss of control; and emotional turmoil. Of these interrelated factors, the most important is the relationship between parents and doctors. For parents, quality of life considerations are individual. For all study participants, the interests of the baby are most important. According to neonatologists, parents are the appropriate decision-makers, but within limits. It is concluded that not only do parents make different decisions from those of doctors and nurses, but that several concerns in the decision-making process in our NICU require urgent attention.