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-anddeath
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.Graduate and Postdoctoral StudiesGraduat
