Neonatal intensive care as a locus for ethical decisions

Children born with congenital anomalies are usually cared for in the neonatal intensive care unit (NICU). Although most of these children will have conditions amenable to surgical correction, many will have serious underlying disorders that will alter the approach to management of the secondary birth defects and the child. The decision as to whether to treat or withhold treatment from a child with congenital anomalies lies with the parents or legal guardians with guidance and counseling from the health and medical care givers. The ability to make a rational decision about whether or not to offer treatment depends upon the ability to make a correct diagnosis, understand the implications of the diagnosis, and to be able to communicate this information to the patient's family. This responsibility, in many centers, falls upon the shoulders of the clinical geneticist. There is a critical need for clear communication among care givers who comprise the management team and between the management team and the family. Major obstacles that can arise include lack of communication among care givers and the reluctance of family members to make decisions regarding withholding treatment despite a diagnosis of a condition with a grave prognosis. As our technology improves, our ability to save the lives of the smallest and sickest infants will increase; the greatest dilemma, however, which we will face will not be whether we can treat, but rather, whether we should treat certain conditions and how these decisions will be made.