The parents' perspective: ethical decision-making in neonatal intensive care

Ethical debate abounds in the literature relative to treatment decisions for the high risk neonate in the intensive care nursery. A systematic examination of the parents' perspective is missing. To fill this existing gap, the ethical dimension of care was explored with 32 families of high risk newborns from a Level III nursery, using a moral conflict interview guide in order to describe their perspective. A concept of the medicalization of parenting appears to best reflect the parents' view of ethical decision-making responsibility. This concept evolved through the parents' reflection on conflict naming, content of decision-making, context of decision-making, information sharing and perception of infant status. These concerns differ profoundly from those of health professionals, philosophers, theologians and others active in this debate who cite lower limits of viability, iatrogenic effects of treatment, use of multiple invasive procedures, and the role of paternalism as ethical issues.