ON THE COVERParental Decisions and Physician ResponsibilitiesBaby Doe BlindersBaby José2001 John Conley Ethics Essay Contest for Medical StudentsMaking Mortal Decisions at the Beginning of Life: The Case of Impaired and Imperiled Infants
Journal: JAMA (2000)

HAVE CREATED UNFORESEEN ETHICAL dilemmas that medical students will routinely confront.Thus, the teaching of bioethics continues to assume a more central role in medical education.Indeed, California now requires course work in ethics as a prerequisite to medical licensure.One specific ethical dilemma concerns the use of neonatal technology to sustain life.The benefit of prolonging life must sometimes be weighed against considerations about quality of life.For nearly half a century, neonatal intensive care units have been a locus for this debate.In 1974, many prominent physicians gave supportive testimony to the Senate Subcommittee on Health regarding the practice of passive euthanasia for infants born with birth defects. 1 The euthanasia debate becomes polarized between the sanctity and quality of life.Further complicating the debate is that the imperiled newborn lacks decision-making capacity and thus requires a proxy.Although some contend for the absolute role of the parent in this situation, others argue that parents in these initial moments are not suited to serve as surrogate decision makers.United States legal tradition accords parents presumptive authority to make decisions for their children on the assumption that parents will always act in accordance with the child's best interest. 2Furthermore, because parents play an ongoing role in the lives of their children, decisions regarding the welfare of a child also affect the parents.However, the choice of parents to withhold treatment because they believe themselves incapable of caring for an impaired child is considered by some to be insufficient grounds to ignore the at best poorly defined interests of the child.If society is to impose itself upon the family, it must bear some responsibility for the consequences of its interference.Others conclude that in situations involving the life or death of a child, the parent is not capable of making medical decisions for that child.Competing claims on a parent's resources can lead to inappropriate decisions based on a weakly justified utilitarian standard.The initial disappointment that a parent experiences at the birth of a child who fails to meet a socially defined construct of perfection can result in a parent's choosing, at least temporarily, to ignore the child's best interest.In these situations, society must stand in loco parentis.Third-party intervention, however, may not always support prolonging life.The state often must intercede when parents subject newborns to futile overtreatment because of their understandable inability to say good-bye. 2 In this issue of MS JAMA, the winners of the 2000 John Conley Ethics Contest for Medical Students address the ethical obligations of the physician who is asked by the parents of a neonate with trisomy 21 to withhold treatment for a lethal, but surgically repairable, medical condition.Joel Frader, MD, introduces the debate by addressing the responsibilities of both the physician and society to imperiled newborns.