Neonatal Intensive Care: Parents’Role in Ethical Decision Making

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Abstract
Who should decide on treatments and life‐sustaining procedures for seriously malformed and extremely premature newborns? The Baby Doe legislation takes most life‐and‐death decisions out of the hands of both parents and physicians, and neonatal intensive care unit (NICU) staff may not present day‐to‐day treatment decisions to parents as ethical ones. Informed consent doctrines and physician expertise and objectivity cannot be relied upon as guides to ethical decision making. This is illustrated by several well‐publicized NICU cases, and by the sometimes disastrous use of unproved medications and procedures in what amounts to uncontrolled experimentation on NICU populations. Parents can take steps to enter the decision‐making process in newborn intensive care.