장애를 가진 신생아의 윤리적인 치료: 단국대학교병원의 Werdinig-Hoffman 병 증례를 통한 분석

Under what circumstances, if any, is it ethically acceptable to withhold ordinary medical care from babies born with severe disabilities? Doctors at Dankook University Hospital in Chonan, South Korea were forced to confront this question in November 1999 when a 15 year-old girl, who had recently given birth to a baby with Werdinig-Hoffman disease, requested physicians to withhold basic life-sustaining treatment from her baby. Cases such as this one raise several difficult ethical questions, chief among which are the following two. First, who should decide whether or not to withhold life-sustaining treatment from an impaired neonate: the baby’s parents, the attending physicians, or someone else? Secondly, what considerations should be relevant to this decision?

In this paper we answer these two questions and, in so doing, provide an ethical framework that can be used by physicians in making and evaluating decisions regarding the treatment of impaired neonates. After providing this framework, we then apply it to evaluate the decision that was made in the Dankook case.

The ethical framework that we argue for in this paper is a best-interests position similar to that which has been proposed by Robert Weir. Our defense of this position is based on the idea that the principles and practices governing pediatrics in general should also govern the treatment of impaired neonates. Since the principle of beneficence is the guiding principle in pediatrics, in contrast to adult medicine which is governed chiefly by patient autonomy, the principle of beneficence should also be the guiding principle for physicians treating impaired neonates. A consequence of this, we argue, is that it is physicians, rather than parents, that should be the primary decision-makers with respect to the question of whether or not to withhold life-sustaining treatment from an impaired neonate.

Furthermore, we argue that this decision is one that should be based only on considerations of what is in the baby’s best interests, where that is understood from a strictly medical point of view. In particular, we claim that the emotional or financial stability of the baby’s family should not be treated as relevant in the physician s decision-making process.