Medical futility is often a point of debate in situations of hoping for an unlikely outcome, or a condition with a treatment that necessitates high levels of pain or discomfort. Anencephaly is generally accepted as incompatible with prolonged life, with few infants surviving into the neonatal period. Parents are typically counseled accordingly, resulting in pregnancy termination or comfort care after delivery. This case report examines the ethical considerations involved in the decision to continue life-prolonging treatment of an 8-month-old infant with anencephaly.
A medical team considers withdrawal of artificial nutrition and hydration supporting a 6-month-old girl with complex cardiac disease, devastating neurological injury, and ongoing, unmanageable pain. Diffuse neurological injury and severe ischemia in all four limbs offers a bleak prognosis. Drawing on the bioethics literature on the subject, the following case presentation and analysis illustrates how a medical team and family can approach such a situation.
When technologically advanced medicine fails to “rescue [a patient] intact from the conditions of her birth,” professionals must rely even more squarely on the foundation of good medicine – human-centered caring. While we do not disagree with Mr. Teti’s ethical analysis, we believe that ethics consultants can (and should) do more to support the medical team in achieving this foundational goal.