Intraventricular hemorrhage and the ethics of treatment limitations

Ethical issues have always been a part of neonatology, but with increased survival of extremely premature infants of lower gestational ages, parents and health care professionals are now faced with previously unforeseen complications, including large intraventricular hemorrhages (IVH) and sequelae. There is a high risk of moderate-severe neurodisability in infants with severe brain bleeds and generally, at the time of diagnosis, infants still have to undergo a long hospital course with potentially many complications. The presence of large IVH and periventricular leukomalacia frequently triggers conversations with families about the goals of care, discussing chances for survival and risk for long-term morbidity. The provider has to be prepared to provide accurate, unbiased counseling to families tailored to their needs and values. There is diagnostic uncertainty, especially in patients experiencing unilateral injury. Long-term neurodevelopmental outcomes and perceived quality of life can be significantly better than predicted. The variable outcome in this population needs to be acknowledged during conversations with the families, particularly when discussing patients with unilateral injury. After careful counseling considering the extent of the injury and a realistic assessment of potential outcomes, we need to define the zone of parental discretion and parents should be offered the opportunity to work jointly with providers to decide what is in a child's best interest and make treatment decisions on their child's behalf.