Epidemiology, Economics, and Ethics in the NICU: Reflections From 30 Years of Neonatology Practice

Over the past 30 years, I have noted 4 epidemiological points, each of which, I believe, must inform future conversations between neonatal intensive care unit (NICU) physicians, parents, and policy makers. First, there are no credible arguments against NICU care that rely on invoking cost or distributive justice. NICU dollars are remarkably well targeted to children who will ultimately survive to be discharged, as opposed to die in the NICU. If any rationing arguments are to be made, then they should be directed against sick adults in intensive care units. Second, the vast majority of infants admitted to the NICU, even infants sick enough to require mechanical ventilation, will survive to be discharged home—and every caretaker knows this, every day. Again, these findings stand in sharp contrast to adult patients in intensive care, where discordant predictions of survival are the norm, not the exception. Third, medical caretakers are remarkably poor at predicting which infants will die in the NICU, using either serial illness severity algorithms or serial intuitions. Nearly half of all babies predicted to die in the NICU by either strategy will survive to be discharged nonetheless. Fourth, and finally, medical caretakers seem remarkably good at identifying burdensome outcomes (either death or survival with permanent serious neurological disability) while babies are still sick enough that an alternative (ie, withdrawal of the ventilator) is ethically possible. Only 5% of ventilated extremely low birth weight babies receiving ventilation who are predicted to die before NICU discharge will be alive and neurologically unscathed at 2 years of age.