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End-of-life decisions for extremely low-gestational-age infants: why simple rules for complicated decisions should be
Amélie Dupont-Thibodeau1, Keith J Barrington2, Barbara Farlow3
1Department of Pediatrics and Clinical Ethics, University of Montreal; Neonatology and Clinical Ethics, Sainte-Justine Hospital, Montreal, Quebec, Canada H3T 1C5.
Insights
Ethical guidelines for extremely preterm infants require more than gestational age. Individualized care plans, considering all prognostic factors and family goals, are crucial for ethical decision-making.
Area of Science:
- Neonatal Ethics
- Perinatal Medicine
- Bioethics
Background:
- Interventions for extremely preterm infants raise significant ethical dilemmas.
- Current guidelines often categorize infants based on gestational age, leading to inconsistent international practices.
- The ethical basis for using gestational age as the sole determinant for intervention categories is seldom examined.
Purpose of the Study:
- To critically evaluate the ethical justification of gestational age-based guidelines for periviable infants.
- To advocate for more comprehensive criteria in decisions regarding life-sustaining interventions.
- To promote individualized goals of care in neonatal intensive care.
Main Methods:
- Ethical analysis of existing guidelines for periviable infant interventions.
- Review of the limitations of gestational age-based categorization.
- Discussion of the need for incorporating broader prognostic information and ethical frameworks.
Main Results:
- Gestational age-based guidelines lack rational justification and rely on imprecise data.
- Definitions of "intact" survival and severe disability are often unclear and inconsistently applied.
- The concept of "qualitative futility" requires explicit ethical justification and comparison to older patients.
Conclusions:
- Gestational age alone is an insufficient basis for determining intervention categories for extremely preterm infants.
- Ethical decision-making necessitates individualized care plans that incorporate prognostic uncertainty and family values.
- A shift from simplistic categorization to personalized care is essential for ethical neonatal interventions.
Abstract:
Interventions for extremely preterm infants bring up many ethical questions. Guidelines for intervention in the "periviable" period generally divide infants using predefined categories, such as "futile," "beneficial," and "gray zone" based on completed 7-day periods of gestation; however, such definitions often differ among countries. The ethical justification for using gestational age as the determination of the category boundaries is rarely discussed. Rational criteria used to make decisions regarding life-sustaining interventions must incorporate other important prognostic information. Precise guidelines based on imprecise data are not rational. Gestational age-based guidelines include an implicit judgment of what is deemed to be an unacceptably poor chance of "intact" survival but fail to explore the determination of acceptability. Furthermore, unclear definitions of severe disability, the difficulty, or impossibility, of accurately predicting outcome in the prenatal or immediate postnatal period make such simplistic formulae inappropriate. Similarly, if guidelines for intervention for the newborn are based on the "qualitative futility" of survival, it should be explicitly stated and justified according to established ethical guidelines. They should discuss whether newborn infants are morally different to older individuals or explain why thresholds recommended for intervention are different to recommendations for those in older persons. The aim should be to establish individualized goals of care with families while recognizing uncertainty, rather than acting on labels derived from gestational age categories alone.
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