Fostering medical staff reflection on the technological alienation of parents in the NICU

Abstract

We describe a case of parents refusing a tracheostomy for an otherwise healthy newborn. The refusal was not honored because permitting the refusal would have violated state law, which required a child to have a qualifying condition (e.g. a terminal diagnosis, permanent unconsciousness, incurable condition with severe suffering) to remove or withhold life-sustaining treatment. However, this case strained the relationship between the parents and medical staff, who worried about sending the newborn home with a tracheostomy where she was not wanted. While many ethical issues arise in treatment refusal cases like this, we focus on the opportunity for ethicists to help the medical staff reflect on the technological alienation of the parents, which may help foster empathy, reduce moral distress, and strengthen the quality of the doctor-parent-patient triad.