Ethical Validity of Withholding Treatment to Neonates Born with Congenital Diseases

Abstract

Withholding medical treatment to neonates born with congenital diseases has been prevailed in many countries since the 1970s. In Japan, several guidelines have been established that classify the cases in which we are permitted to withhold life-prolonging treatment. Nonetheless, no definite social consensus has been reached about whether and how withholding treatment because of disability can be ethically valid. Our aim in this study was to clarify the standards of withholding medical treatment to handicapped neonates that are ethically justifiable. First, we point out that withholding treatment to infants is essentially different from ordinary cases because the infant patients utterly lack autonomy. Then, we argue that "intolerable suffering," "quality of life," and even "the best interest" can never compensate for the lack of autonomy. These principles are inadequate for the standard we seek because objective validity is required for the criterion to justify selective nontreatment of infants with handicaps but aforementioned principles can acquire only subjective and individual validity. Consequently, we examined the justifiability of deciding selective nontreatment, which can be both ethical and feasible, claiming the importance of changing our point of view from an individual to a social level, and of a decision-making system based on a broad consensus, not on personal will. Meanwhile, we propose introducing palliative care for terminally ill neonates in order to provide them with dignified end-of-life phase.