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

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.

Keywords: Comfort care; Disability; Grade 3–4 hemorrhage; Intracranial hemorrhage; Intraparenchymal hemorrhage; Life sustaining therapy; Neurodevelopmental; Palliative care; Parental perspectives; Personalized decision-making; Withdrawal life sustaining therapy.