Infants of borderline viability: Ethical and clinical considerations

Summary 

The burden of prolonged intensive care for infants of borderline viability and the relatively high disability rate among survivors pose ethical and clinical problems. Bioethicists have argued that clinical decisions should be based on the infant's ‘best interests’, balancing the burden of intensive care including ‘pain and suffering’ against the likely outcome. However, there are so many uncertainties that the ‘best interest’ argument is more helpful in defining problems than driving clinical solutions. The parents' interests are inextricably linked with those of their infant and have considerable weight. Parental complaints about delivery room care are rarely based on a conflict of ethical opinion. They are more likely due to misunderstanding, confusion and tension among staff and parents as a result of a failure to have in place or to implement agreed protocols. Information given during pre-delivery counselling can easily be misunderstood. The condition of the infant at birth and response to bag and mask ventilation have an important role in influencing whether to continue intensive care. Subsequent care in the neonatal intensive care unit (NICU) should be considered as a ‘trial of life’, with the option of withdrawing ventilatory assistance according to the nature and extent of neonatal complications.

Keywords: Ethics, Extremely low birth weight, Extreme prematurity, Neonatal intensive care, Neurodisability, Parental involvement, Survival, Value of life, Withdrawal of care