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
Jack Alan Reynolds
Learn more about PhilPapers
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)|
Setup an account with your affiliations in order to access resources via your University's proxy server
Configure custom proxy (use this if your affiliation does not provide a proxy)
|Through your library|
References found in this work BETA
Derek Parfit (1984). Reasons and Persons. Oxford University Press.
John MacFarlane (2003). Future Contingents and Relative Truth. Philosophical Quarterly 53 (212):321–336.
John Broome (2004). Weighing Lives. Oxford University Press.
Gerald M. Edelman & Giulio Tononi (2000). A Universe of Consciousness: How Matter Becomes Imagination. Basic Books.
Immanuel Kant (1900). Kritik der Reinen Vernunft. Georg Reimer.
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.
Similar books and articles
Robert Keith Shaw, Michael A. Peters & James D. Marshall (1986). The Development and Trials of a Decision-Making Model. Evaluation Review, 10 (1):5-27.
G. Radick (2001). A Critique of Kitcher on Eugenic Reasoning. Studies in History and Philosophy of Science Part C 32 (4):741-751.
David Nantais & Mark Kuczewski (2004). Quality of Life: The Contested Rhetoric of Resource Allocation and End-of-Life Decision Making. Journal of Medicine and Philosophy 29 (6):651 – 664.
Baruch A. Brody (1988). Life and Death Decision Making. Oxford University Press.
Gretchen B. Chapman & Frank A. Sonnenberg (eds.) (2000). Decision Making in Health Care: Theory, Psychology, and Applications. Cambridge University Press.
Helga Kuhse (1987). The Sanctity-of-Life Doctrine in Medicine: A Critique. Oxford University Press.
Arthur R. Derse (1999). Making Decisions About Life-Sustaining Medical Treatment in Patients with Dementia. Theoretical Medicine and Bioethics 20 (1):55-67.
D. Micah Hester (2007). Interests and Neonates: There is More to the Story Than We Explicitly Acknowledge. Theoretical Medicine and Bioethics 28 (5):357-372.
Matti Häyry (1991). Measuring the Quality of Life: Why, How and What? Theoretical Medicine and Bioethics 12 (2).
Richard J. McKenna (1996). Explaining Amoral Decision Making: An External View of a Human Disaster. [REVIEW] Journal of Business Ethics 15 (6):681 - 694.
Added to index2009-11-11
Total downloads19 ( #147,764 of 1,726,564 )
Recent downloads (6 months)2 ( #289,822 of 1,726,564 )
How can I increase my downloads?