End-of-life decisions for extremely low-gestational-age infants: why simple rules for complicated decisions should be avoided

Semin Perinatol. 2014 Feb;38(1):31-7. doi: 10.1053/j.semperi.2013.07.006.


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.

Keywords: CPR; Disability; ELGAN; End-of-life decisions; Ethics; Experimental medicine; Extreme prematurity; Extremely low-gestational-age infants (ELgestational ageN); Futility; Informed consent; Life-sustaining interventions; NICU; Parental adaptation; Withhold and withdraw intensive care; cardiopulmonary resuscitation; extremely low-gestational-age infants; neonatal intensive care unit.

Publication types

  • Review

MeSH terms

  • Decision Making / ethics
  • Female
  • Fetal Viability*
  • Gestational Age*
  • Humans
  • Infant, Extremely Low Birth Weight
  • Infant, Newborn
  • Intensive Care, Neonatal / ethics*
  • Intensive Care, Neonatal / organization & administration
  • Male
  • Medical Futility / ethics*
  • Medical Futility / psychology
  • Palliative Care / ethics*
  • Parents / psychology*
  • Practice Guidelines as Topic
  • Pregnancy
  • Resuscitation Orders / ethics*
  • Withholding Treatment / ethics