Extremely premature infant care: Reasonable progress or therapeutic fury?

Abstract

Application of palliative comfort care versus neonatal intensive care for extremely premature births is a judgment fraught with uncertainty and risk, principally for the pregnant woman and family. Survival and good health are possible, but suffering, chronic health issues, and socio-economic inequities are burdensome to families. Survival rates of infants born at 22, 23, and 24 weeks’ gestation are increasing, but morbidity rates and long-term neurodevelopmental impairments are substantial and not improving. Outcomes acceptable to some pregnant women and families are not acceptable to others. Autonomy of pregnant women contrasted with the rights of the fetus and infant are affected by culture, religion, technology, and powerfully persuaded by physicians who possess conflicts-of-interest related to career goals, income, and research priorities. Interventions related to extreme prematurity care such as cesarean deliveries create serious health risks for pregnant women. Intensive care of extremely premature infants is expensive, and lost opportunity costs for families and society are under-appreciated. Physicians should resist dogmatic positions tethered to non-rigorous evidence and technology. Physicians best serve pregnant women by listening to their concerns and preferences, objectively reviewing clinical outcomes, and by avoiding care options presented as restrictive protocols, or wide-open menus. The legitimate zone of parental discretion embraces value pluralistic shared decision-making and informed consent. This principle is unequivocally endorsed by the American Academy of Pediatrics and American College of Obstetricians and Gynecologists. Because there is no unifying cultural, religious, or bioethical ethos, we should embrace shared decision-making recognizing the inherent contingencies and disagreements of extreme prematurity.