Quality of life - and of ethics consultation - in the NICU

Case narrative:One Sunday afternoon, the on-call ethicist (one of the co-authors) received a consultation request from the Neonatal Intensive Care Unit (NICU) of our 500-bed academic medical center. Two weeks earlier, a baby had been born at term with skeletal, renal, cardiac, and (most profoundly) pulmonary abnormalities but no known neurologic defects. The baby had been intubated in the delivery room and subsequently developed pulmonary hypertension, requiring high ventilator settings and inspired oxygen concentration and necessitating that the patient be chemically paralyzed.Because the patient’s abnormalities were not consistent with any defined syndrome, his long-term prognosis remained unclear – the neonatology team covering on the weekend described it as “quite bleak.” It was possible that the patient could become permanently ventilator-dependent, although it was also possible that he would eventually breathe on his own, albeit still with limb deformities and renal problems. The only certainty at that time was that the patient would require weeks to months of ventilatory support to survive.Two days earlier, the NICU team had met with the family, and the decision was made to de-escalate the patient’s level of life support by withdrawing chemical paralysis and making the patient DNR (do not resuscitate). Although mechanical ventilation was continued, most people involved in the case (including the patient’s parents) did not expect the baby to survive. However, to everyone’s surprise, over the next 48 hours, his respiratory condition stabilized and even improved. On Sunday afternoon, the parents requested discontinuation of mechanical ventilation.