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Keywords:

  • Decision-making;
  • Emotions;
  • Ethics;
  • Extreme prematurity;
  • Informed consent;
  • Outcomes of high-risk infants;
  • Peri-viability guidelines;
  • Physician/patient/parent relationship;
  • Prematurity;
  • Preterm labour;
  • Quality of life

Abstract

When physicians are asked for a consult for women in premature labour, they face a complex set of challenges. Policy statements recommend that women be given detailed information about the risks of various outcomes, including death, long-term disability and various specific neonatal problems. Both personal narratives and studies suggest that parents also base their decisions on factors other than the probabilistic facts about expected outcomes. Statistics are difficult to understand at any time. Rational decision-making may be difficult when taking life-and-death decisions. Furthermore, the role of emotions is not discussed in peri-viability guidelines.

Conclusion:  We argue against trying to tell parents every fact that we think might be relevant to their decision. This may be overwhelming for many parents. Instead, doctors should try to discern, on a case-by-case basis, what particular parents want and need. Information and delivery of information should be personalized. Unfortunately, evidence in this area is limited.