Introduction

The management of the brain-dead individual moves physicians beyond the traditional boundaries of medicine. The physicians are confronted with an assortment of moral, professional, and psychological problems whose effects are deeply felt by both family members and healthcare providers. To vividly illustrate how such cases can play out in practice, despite all preparations of protocols and policies, we present a case which focuses upon the problems encountered once a four-year-old child is diagnosed as fulfilling brain-death criteria. We focus upon the medical interventions and the psychosocial support that were required in the care of this patient, and in addition we address the ethical dilemma caregivers faced while caring for this patient in a critical care unit.

The case

The patient was a four-year-old female who was transferred to a tertiary pediatric intensive care unit following a cardiorespiratory arrest. Prior to this event she was bed-ridden with Pierre-Robin syndrome (an autosomal recessive disorder characterized by a small jaw [micrognathia], retracted tongue [glossoptosis], and upper airway obstruction) and severe developmental delay. Because of poor airway control and gastroesophageal reflux, she was fed via a surgically placed gastric tube.