title: Quality-of-life considerations in substitute decision-making for severely disabled neonates: the problem of developing awareness.
abstract: Substitute decision-makers for severely disabled neonates who can be kept alive but who will require constant medical interventions and will die at the latest in their teens are faced with a difficult decision when trying to decide whether to keep the infant alive. By and large, the primary focus of their decision-making centers on what is in the best interests of the newborn. The best-interests criterion, in turn, is importantly conditioned by quality-of-life considerations. However, the concept of quality of life is logically and ethically different for patients with a developing as opposed to a developed awareness. Unfortunately, this difference is ignored by current quality-of-life considerations, there are no quality-of-life measures that take this difference into account, and decision-making proceeds entirely without acknowledging this fact. This note outlines why this is a problem and why there is a need for a new set of tools that incorporates this distinction if the substitute decision-makers are to apply the best-interest criterion in a meaningful way.
authors.affiliation: Department of Philosophy, University of Victoria, Victoria, BC V8W3P4, Canada. ekluge@uvic.ca
authors.forename: Eike-Henner W
authors.initials: EH
authors.lastname: Kluge
mesh_terms: D001364:Awareness / Q000941:ethics; D002651:Child Advocacy / Q000941:ethics; D002675:Child, Preschool; D003657:Decision Making / Q000941:ethics*; D006233:Persons with Disabilities; D026689:Ethical Analysis; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D016743:Mental Competency; D028681:Moral Obligations; D010287:Parent-Child Relations; D033282:Parental Consent / Q000941:ethics / Q000331:legislation & jurisprudence; D011788:Quality of Life; D012941:Social Responsibility; D028761:Withholding Treatment / Q000941:ethics / Q000331:legislation & jurisprudence