Quality-of-life considerations in substitute decision-making for severely disabled neonates: The problem of developing awareness

Theoretical Medicine and Bioethics 30 (5):351-366 (2009)
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.
Keywords Neonates  Developing awareness  Quality of life  Substitute decision-making
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DOI 10.1007/s11017-009-9119-z
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References found in this work BETA
John MacFarlane (2003). Future Contingents and Relative Truth. Philosophical Quarterly 53 (212):321–336.
John Broome (2004). Weighing Lives. Oxford University Press.

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