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Assessment and Evaluation of the High Risk Neonate: The NICU Network Neurobehavioral Scale
19:15

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Quality-of-life considerations in substitute decision-making for severely disabled neonates: the problem of

Eike-Henner W Kluge1

  • 1Department of Philosophy, University of Victoria, Victoria, BC V8W3P4, Canada. ekluge@uvic.ca

Theoretical Medicine and Bioethics
|November 10, 2009
PubMed

Insights

Decisions for severely disabled neonates require new quality-of-life tools. Current methods fail to distinguish between developing and developed awareness, hindering best-interest assessments for infants requiring lifelong medical care.

Area of Science:

  • Medical Ethics
  • Neonatal Care
  • Bioethics

Background:

  • Substitute decision-makers face complex choices for severely disabled neonates requiring intensive medical support.
  • Current decision-making relies on the best-interests criterion, heavily influenced by quality-of-life considerations.

Purpose of the Study:

  • To highlight the inadequacy of existing quality-of-life measures for neonates with developing awareness.
  • To argue for the necessity of new assessment tools that differentiate awareness levels in ethical decision-making.

Main Methods:

  • Conceptual analysis of the best-interests criterion in neonatal care.
  • Ethical examination of quality-of-life assessments for patients with varying levels of awareness.

Main Results:

  • Existing quality-of-life considerations are ethically and logically insufficient for neonates.
  • The distinction between developing and developed awareness is currently ignored in clinical practice.

Conclusions:

  • A significant gap exists in ethical frameworks for neonatal decision-making.
  • New tools are needed to meaningfully apply the best-interest criterion for neonates with developing awareness.

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