Informed Consent

A mother faces the dilemma of either continuing medical care of her hopelessly ill child or putting an end to what she considers his “high-tech medical torture”. Finally, a wise clinician helps release her from her terrible conflict.

Bobby's eyes would sparkle when he talked about baseball. He knew all the top players' batting averages dating back to their rookie years. Like a lot of 12-year-old boys, Bobby loved baseball. But unlike most, he never had a chance to play little league or sandlot ball. Bobby had muscular dystrophy. His delayed motor development, waddling toe walk, and large calf muscles made the diagnosis painfully obvious when he was still a toddler. Physical therapy, bracing, and heel-cord-release surgeries were futile in preventing Bobby from being confined to a wheelchair by the time he was 8. Now, at 125 pounds, his pear-shaped body was nearly impossible for his mother Susan to handle. Caring for him was a full-time job and she had little help at home. Bobby's father, unable to cope emotionally with the illness, had left them when the child was only 6. Although Susan was attractive with short, brown hair and an engaging smile, she was never able to find a companion willing to share her devotion to Bobby. She proudly displayed her community college degree on the walls of her apartment, yet she knew that working outside the home and entrusting Bobby's total care to someone else was financially and emotionally impossible.

Bobby had been in the intensive care unit before, but this time was different. Susan could barely stand looking at what seemed like an endless stream of lines and catheters going in and out of her beloved son. She realized Bobby's muscular dystrophy had severely damaged his heart muscle causing, as one of his doctors explained, “a severe cardiomyopathy unresponsive to conventional antiarrhythmics”. With increasing frequency, the cardiac monitors would sound their alarms, the intensive care team would perform CPR, and Bobby would be defibrillated into normal sinus rhythm. This scene was repeated as if it were part of a Broadway show rehearsal. Susan also knew Bobby's respiratory muscles were losing what little power they had left. Her practiced eye could see by the movement of the respirator that Bobby was breathing less and less on his own. Although she knew the hopelessness of the situation, she could not bring herself to put an end to what she considered the hi-tech medical torture of her child. In the beginning, whenever the alarms went off, the doctors would ask Susan to leave the room. After a while, the ICU team let her stay with Bobby. From time to time, Susan was asked by a member of the medical team to consent to a “do not resuscitate” order. She never could. “How can I sign my child's death warrant?” she would ask. “Please don't ask me to do this”.

Fortunately, Dr. Harold Jones was also involved in Bobby's care. Dr. Jones was tall, had a crop of white hair on each side of his bald crown, and walked with military bearing. He inspired immediate confidence. Despite his formidable appearance, he had the uncanny ability to establish rapport instantly with patients. He had seen Bobby from time to time in the muscular dystrophy clinic and they had gotten along fabulously because both of them loved the Boston Red Sox and could not stand the New York Yankees. Whenever Dr. Jones would talk to patients, he would always be at eye level, never looking down at them in their beds. He did not allow objects such as a desk to come between him and a patient. He would either sit down on the bed with the patient or pull up a chair alongside. He usually held the patients' hand and gently touched them wherever they felt the slightest discomfort. He didn't spend an excessive amount of time with people, but they always seemed to feel he was there longer than he actually was. Perhaps his empathy stemmed from his first-hand knowledge of loving a handicapped child. His own son was severely mentally retarded.

Dr. Jones sat with Susan, held her hand, and listened to her story. He agonized with her about her inability to consent to a “do not resuscitate” order. He felt the need to come between the bureaucratic, legal aspects of Bobby's care and Susan's personal struggle. Then it happened again. Bobby's head rolled sideways and the alarms sounded their continuous BEEEEP. Dr. Jones looked into Susan's pleading eyes and appeared to see into her heart. He stood up, blocked the doorway and prevented the intensive care team from entering. For a moment it seemed as if there would be a confrontation. But Dr. Jones was obviously immovable. He clearly had Susan's “informed consent” even though no papers had been signed or court orders issued. His authority to act in Susan's behalf went unchallenged. Susan held Bobby and sang him his favorite baseball song. She and Dr. Jones exchanged glances for the last time and then she whispered, “Thank you”.

• Copyright ©2004 by the American College of Physicians