The choice to end life as a ventilator-dependent quadriplegic

A 17-year-old male sustained a C5/6 fracture dislocation and complete C5 quadriplegia in a diving accident. Three days later sensory and motor function deteriorated and he required mechanical ventilation. Surgical exploration found no cause and a fusion was done. Neurologic function stabilized after three weeks with a C1 sensory level, no neck movement, and slight weakness of the tongue. Patient and family were followed closely by the spinal cord injury rehabilitation team from onset of injury. The patient was transferred to the ventilator-dependent pediatric rehabilitation program after ten weeks. Bowel, bladder, skin, and nutritional management were stabilized and taught to his parents who remained with him constantly. Communication was achieved with a "talking tracheostomy." He learned to use "Sip-n-Puff" control for driving an electric wheelchair and for Morse code input to a computer. He was passive but cooperative during hospitalization. Eight months after injury he was discharged to his home, which had been modified to meet his needs. A computer word processor, environmental control unit, and modified van were obtained; nursing care was provided around the clock. The patient enrolled in a community college course. Soon after discharge he contacted an attorney to explore legal actions for ending his life, which he considered intolerable. After obtaining medical and psychiatric reports, a court order was issued, which established his legal competence and directed people taking care of him to follow his directions. A few weeks later, 25 months after his injury, he privately said goodbye to his family, asked to be disconnected from the ventilator, and died. Medical and legal issues raised by this case are discussed.