Medical Paternalism or Parental Autonomy in Decision Making: A Portuguese Study in Premature Newborns

Health care providers and parents may have distinctive roles in the decision-making process regarding the care and treatment of premature babies. In this paper, we explore the process of decision making among doctors, nurses, and parents in premature care units (neonatal intensive care unites, NICUs) located in the central region of Portugal. Forty-one semistructured interviews with doctors, nurses, and mothers were conducted and analyzed. There is evidence that the medical teams provide a considerable amount of information to parents of premature babies, although sometimes unfavorable prognostic data are omitted. Mothers showed a high degree of confidence in the skill and knowledge of the medical professionals and accepted the latter's role in making decisions regarding the care and treatment of their premature babies. Only when invasive procedures or surgery were serious possibilities was something resembling written informed consent obtained. Ethics committees were seldom consulted. The results show that in the region surveyed, parents neither are invited nor appear to demand a role in making medical decisions that affect their babies. No conflicts between medical providers and parents were detected, suggesting that informed consent and the participation of parents in medical decisions regarding the care and treatment of their babies are not considered necessary or useful in this particular area by the respective parties, in contrast with the tenets of autonomy-based ethics.