Has the Emphasis on Autonomy Gone Too Far? Insights from Dostoevsky on Parental Decisionmaking in the NICU

Abstract:     
Treatment of extremely premature infants in a high-technology neonatal intensive care unit (NICU) frequently takes on a life of its own. Although bioethicists and courts agree that there is no ethical or legal difference between withholding or withdrawing a respirator from a patient, parents and physicians find the withdrawal much more emotionally troubling. It is apparent in medical narratives that people are not eager to take responsibility for tragic decisions. The authors believe that a similar pattern is prevalent in many end-of-life medical decisions, particularly those made in the NICU. Family members may want the treatment to be withdrawn, but no one wants to be the one to give the directive to do so. As evidence, the authors cite the experience of a neonatal intensive care doctor as he describes the process of decision-making in the NICU.

The authors suggest that when, despite our best efforts, medical interventions on the extremely premature infant do not succeed in reversing disease processes, we need not compound the grief of parents by asking their permission to withdraw the failed therapies. It is enough for the parents to agree that in light of their baby’s condition, the focus should be on keeping the child’s final moments as comfortable as possible. Then the most the physician can do is to support the parents as they keep company with their baby in the last stages of its brief

Number of Pages in PDF File: 6

Keywords: law, society, economics, medicine, health care

Accepted Paper Series