He didn't have a chance.

James was 16 years old when he first came to my clinic. I had just finished my fellowship training in hematology and oncology 2 years earlier and was an assistant professor at the University of Florida. When I first met James, I knew it was going to be difficult to treat him. He had acute leukemia, the most common cancer in children, but he had many high-risk features, giving him a poor prognosis for shortor long-term survival. In those days—the late 1970s—there was hardly a chance that an African American teenage male with such high-risk acute lymphoblastic leukemia would survive. As I did a physical examination, I became more discouraged. He had large bulky disease and was having trouble breathing because of enlarged lymph nodes in his chest. His liver and spleen were enlarged, and his testicles were swollen, all the result of leukemia infiltration. Moreover, examination of his cranial nerves showed a sixth nerve palsy, almost definitely related to meningeal spread of leukemia. All the while, his mother was desperate, “What is it, Doctor?” she kept saying. “What’s wrong? Will he be okay? He’s my only child. I have no other children, my husband left me when he was just 3 years old and look how strong and big he’s become. I’ve done everything I can for him; I worked hard to make enough money to raise him, I’ve given him food, clothing, love, time, caring. . .tell me, Doctor, that everything will be okay.” I sat down with the two of them to plot his treatment. I knew that I should be honest, but at that moment I did not have the courage to explain details about his prognosis, knowing that they could lose their hope for fighting for his life. I did not have either the life or the medical experience at that time to tell them that I thought he would die from his disease regardless of his treatment. I also had a son who was born 1 year earlier, and I could not have imagined how I could have survived such catastrophic information. Moreover, as I looked into the mother’s desperate face, I could not even begin to explain the impact of the extent of his disease on his outcome. In contrast, I wondered whether it was right to use such aggressive treatment for such poor chances of recovery. I felt caged into a moral quandary. However, as I started to explain the dilemma, I heard myself only saying, “We have treatment...we can try...we won’t know until we try.” The mother suddenly cried, bent on her knees in front of me, and begged me to proceed with whatever it would take to return her son to good health. I looked at my patient, a 16-year-old boy scared for his life, to see if he wanted to tell me something. He said nothing, but rather watched his mother’s face intently as though carrying her pain for her. He spoke through facial expressions as if to say, “Treat me so my mother doesn’t suffer.” He was admitted to the hospital, underwent leukophoresis, received intravenous fluids, allopurinol, alkalinization, and other medicines on the first day and then started chemotherapy on the second day. The first 24 hours went well. He settled into the hospital room and met his roommate, another child of 16, also with leukemia. They played cards together, in a language as universal as music or art. The two bonded together immediately by the commonality of their disease, the disease cutting through socioeconomic, racial, and religious barriers, equalizing them, and us, in a single, common humanity. Things got worse. James developed respiratory distress, pneumonia, pulmonary edema, fluid overload, fungal super infection, sepsis, and renal failure. The infection flared for days despite medications. We increased his supportive care—transfusions, a respirator, positive pressure, hyperalimentation, dialysis, and more. The leukemia drugs were clearly working, as evidenced by his declining blood counts; but they were now so low that he needed intensive care to get through the aplastic phase of treatment. Doctors and nurses in the intensive care unit wanted to give up, showing me data that multisystem failure was usually associated with death and that the costs of aggressive treatment in the last days of life could not be justified by the poor chances of survival. Moreover, they argued with me that the boy had a right to an “easy exit,” and that even if he achieved remission, he would probably not maintain remission. I felt like a judge hearing their messages and remembering his mother’s plea to do anything and the boy’s expressions to listen to his mother. Listening, like a judge rather than doctor, I ordered the medical team to continue on, at all costs, on the outside chance that we would save James’s life. Submitted November 15, 2006; accepted January 3, 2007.