Weiss, Elliott Mark

An infant with complex congenital heart disease suffers a prolonged cardiac arrest with minutes of anoxia. He is left with severe brain damage and profound neurologic impairment. He no longer responds to caregivers. Much of the time, he cries and grimaces as if in pain. He has required increasing sedation to control these symptoms. His parents live hours from the hospital and seldom visit. When their infant’s situation is explained to them over the telephone, they request that doctors “do everything to keep him alive.” His bedside caregivers report high levels of moral and psychological distress and frequently discuss J.S.’s “suffering.” An ethics consultation is requested, asking whether it is permissible to withdraw life support despite the parents’ request that therapy continue.