The Domain of Parental Discretion in Treatment of Neonates: Beyond the Impasse between a Sanctity-of-Life and Quality-of-Life Ethic

Abstract

Treatment decisions for severely compromised neonates raise important questions about what lives should be saved, at what social and economic cost, and whether there are certain lives that are not worth living. Deliberation on these issues can be framed from the perspective of an individual involved in the care (micro-ethics), a religious or cultural community that would provide guidance for such an individual (inter-ethics), or from a broader social or policy perspective (macro-ethics). The resolutions given at these diverse levels can be in tension with one another, and each by itself is incomplete. Values of parents, culture, religion, and society may compete, and each level (micro-, inter- and macro-) may weight these values differently. In modern societies there are also pressures to discount more traditional religious or family values in favor of social or medical values that influence the current configurations of healthcare. Often the tension between these value systems is not even appreciated by the health care workers who make treatment decisions. In the face of these complex realities of medical decision-making, questions need to be asked about who should make decisions and how they should be made. Should treatment decisions on behalf of neonates be made by parents, family, physician, a cultural or religious group, or society? And what ethical frameworks can be used to guide deliberation?

Thanks to Renzong Qui for helpful comments on an earlier draft of this essay. There are two prominent ways of interpreting the contrast between the sanctity-of-life and quality-of-life ethic. The contrast can be seen as a variant of the one between a deontological and utilitarian ethic (Reich, 1978). Deontic constraints on action (e.g., regarding the taking of life, treating a person as means, and violating autonomy) are associated with the sanctity-oflife ethic, while the maximization of some hedon unit (e.g., satisfaction of preferences) or QUALYs are associated with the quality-of-life ethic. Grisez and Boyle (1979) provide a strong philosophical formulation of the sanctity-of-life position, qua deontological ethic.