Decision-making for extremely preterm infants with severe hemorrhages on head ultrasound: Science, values, and communication skills

This article, authored by Marie Chevalier (a former fellow of our unit) with Thuy Mai Luu (in neonatal care), Paige Church (a rehabilitation and neonatal care physician), Annie Janvier, and Keith Barrington, reviews the medical literature regarding the outcomes of preterm infants with significant cerebral bleeding and the variations in practices among different teams or countries.

It then examines the outcomes that are important for families and how to communicate with parents in these situations. Families prefer to hear about function rather than diagnosis; the “F words” being family, function, fun, fitness, and friendships.

https://pubmed.ncbi.nlm.nih.gov/37150640/

Abstract

Severe intracranial hemorrhages are not rare in extremely preterm infants. They occur early, generally when babies require life-sustaining interventions. This may lead to ethical discussions and decision-making about levels of care. Prognosis is variable and depends on the extent, location, and laterality of the lesions, and, importantly also on the subsequent occurrence of other clinical complications or progressive ventricular dilatation. Decision-making should depend on prognosis and parental values. This article will review prognosis and the uncertainty of outcomes for different lesions and provide an outline of ways to conduct an ethically appropriate discussion on the decision of whether to continue life sustaining therapy. It is possible to communicate in a compassionate and honest way with parents and engage in decision-making, focussing on personalized information and decisions, and on function, as opposed to diagnosis.