Quality-of-life considerations in substitute decision-making for severely disabled neonates: The problem of developing awareness
David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Ezio Di Nucci
Jonathan Jenkins Ichikawa
Jack Alan Reynolds
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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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Citations of this work BETA
Chris Gastmans, Gunnar Naulaers, Chris Vanhole & Yvonne Denier (2013). From Birth to Death? A Personalist Approach to End-of-Life Care of Severely Ill Newborns. Christian Bioethics 19 (1):7-24.
Giles Birchley (2014). Deciding Together? Best Interests and Shared Decision-Making in Paediatric Intensive Care. Health Care Analysis 22 (3):203-222.
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