The Extremely Preterm Infant: Ethical Considerations in Life-and-Death Decision-Making

Care of the preterm infant has improved tremendously over the last 60 years, with attendant improvement in outcomes. For the extremely preterm infant, <28 weeks' gestation, concerns related to survival as well as neurodevelopmental impairment, have influenced decision-making to a much larger extent than seen in older children. Possible reasons for conferring a different status on extremely preterm infants include: (1) the belief that the brain is a privileged organ, (2) the degree of medical uncertainty in terms of outcomes, (3) the fact that the family will deal with the psychological, emotional, physical, and financial consequences of treatment decisions, (4) that the extremely preterm looks more like a fetus than a term newborn, (5) the initial lack of relational identity, (6) the fact that extremely preterm infants are technology-dependent, and (7) the timing of decision-making around delivery. Treating extremely preterm infants differently does not hold up to scrutiny. They are owed the same respect as other pediatric patients, in terms of personhood, and we have the same duties to care for them. However, the degree of medical uncertainty and the fact that parents will deal with the consequences of decision-making, highlights the importance of providing a wide band of discretion in parental decision-making authority. Ethical principles considered in decision-making include best interest (historically the sine qua non of pediatric decision-making), a reasonable person standard, the “good enough” parent, and the harm principle, the latter two being more pragmatic. To operationalize these principles, potential models for decision-making are the Zone of Parental Discretion, the Not Unreasonable Standard, and a Shared Decision-Making model. In the final analysis shared decision-making with a wide zone of parental discretion, which is based on the harm principle, would provide fair and equitable decision-making for the extremely preterm infant. However, in the rare circumstance where parents do not wish to embark upon intensive care, against medical recommendations, it would be most helpful to develop local guidelines both for support of health care practitioners and to provide consistency of care for extremely preterm infants.