Decisions for life made in the perinatal period: who decides and on which standards?

Central to the purpose of perinatal medicine and neonatal care are three clinical aims: to save the lives of infants with treatable conditions, to minimise needless suffering and indignity, and to maximise the quality of life in survivors. The report of the Nuffield Council on Bioethics on “Critical care decisions in fetal and neonatal medicine”1 and the policy statement of the American Academy of Pediatrics (AAP) on “Noninitiation or withdrawal of intensive care for high-risk newborns”2 remind us of the difficulties, both ethical and clinical, in trying to achieve these goals for infants born at the threshold of viability. This paper explores the key factors in decision making in this area: Who decides on whether or not to initiate aggressive treatment? Who determines when to stop? What standards, if any, should guide such choices? Whose view prevails when there is a conflict over treatment between the physician and the parents?

Though some such as Michael Tooley3 or Peter Singer4 might argue that newborns lack consciousness and thus have no interests or independent rights, the Nuffield Council’s report makes clear its position that neonates are fully human persons and are to be treated the same as any other patient—on the basis of their best interests. The implication is that although parents may (and indeed should) continue to be involved in decision making for their child, they do not have the sole right to demand or to refuse medical interventions for their infant. As the court put it in Re J (A Minor), the power of parents to make decisions is limited to the power to make decisions in the best interests of the baby.5

Use of the term “best interests” itself raises further questions: Who judges these interests? What criteria are used to assess such interests? …