Decision making about medical care in an adolescent with a life-threatening illness

CASE. Jorge, a 13-year-old Hispanic male, was admitted and treated for acute lymphocytic leukemia 9 months ago. He promptly experienced remission in the first month of therapy. This was followed by 6 months of intensive consolidation that required numerous hospitalizations. He then was placed on maintenance chemotherapy. Jorge is the oldest son of five children born to working-class parents who were both high-school graduates. While undergoing induction, Jorge and his parents seemed to be aware of his treatment course and prognosis. The family related well to the treatment team, and Jorge developed a close relationship with the oncology social worker. At first, he appeared depressed. At times he would state that he was cursed and would never live to graduate college, a long-term goal he shared with his family. However, despite his age, Jorge appeared to be quite mature and was always cooperative with medical procedures. During his second month in maintenance therapy, Jorge's hair was growing back well, and he had returned to school for partial day attendance. His mood was pleasant, and he seemed to be adjusting to resuming life. During a routine clinic visit, a bone marrow aspiration detected the resurgence of his acute lymphocytic leukemia, and he and his family were told about this by the oncologist who worked closely with them. Jorge appeared devastated, as did his parents and the two siblings who were with them that day. The oncologist explained that Jorge's only real chance at survival would require a bone marrow transplantation, and because they did not have a matched related donor, he would have to be placed on a list for an unrelated donor. Jorge immediately asked what his chances of living were, and he was told that approximately 40% of children would survive and be disease-free for 5 years. Jorge and his family were devastated. After a prolonged consultation during which various options were discussed, his family agreed to visit the transplantation center to get additional information. At the center, they were informed about the lengthy time he would need to be in seclusion, the amount of pain and invasiveness involved in the procedure, the long-term issues about graft-versus-host disease, and the likelihood of success using a partially matched nonrelated donor. His parents report that Jorge asked very few questions and did not get along well with the supervising oncologist at the transplant referral center. On returning home, Jorge announced to his parents that he would refuse the transplantation and did not want to be placed on the list. His parents called the oncologist for help. A meeting was arranged the next day, and Jorge, his parents, doctor, social worker, and primary nurse met to discuss the options. His doctor noted that Jorge appeared to be very firm in his decision that he would refuse to cooperate. Jorge had read about other teenagers who had also chosen to die, rather than accept additional painful treatments. His parents were absolutely firm that every possible treatment should be pursued. They felt that a 40% chance was better than no chance at all. They asked his doctor to place Jorge on the waiting list, despite Jorge's strenuous objections.