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|
|Categories||categorize this paper)|
References found in this work BETA
Future Contingents and Relative Truth.John MacFarlane - 2003 - Philosophical Quarterly 53 (212):321–336.
A Universe of Consciousness: How Matter Becomes Imagination.Gerald M. Edelman & Giulio Tononi - 2000 - Basic Books.
Citations of this work BETA
From Birth to Death? A Personalist Approach to End-of-Life Care of Severely Ill Newborns.Chris Gastmans, Gunnar Naulaers, Chris Vanhole & Yvonne Denier - 2013 - Christian Bioethics 19 (1):7-24.
Deciding Together? Best Interests and Shared Decision-Making in Paediatric Intensive Care.Giles Birchley - 2014 - Health Care Analysis 22 (3):203-222.
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