A Sick Boy Says Enough!

It is an almost universal truth that children who have been sick most of thier lives possess a wisdom and maturity beyond their years. Benito Agrelo, 15, possesses both — and plenty of spunk to boot. When social workers arrived with five police cars and two ambulances at his Coral Springs, Florida, home, they planned to force the boy, who is dying of liver failure, to go to the hospital. But Benny, who has already undergone two liver transplants, told them he wanted to be left alone to live out whatever remained of his life in peace. The 5-ft. 2-in. teenager, who weighs just 79 lbs., kicked and screamed and even managed to knock out a windowpane with his elbow before being tied to a stretcher and loaded into an ambulance. At the hospital he refused to have a biopsy or blood tests and spurned the antirejection drugs he was offered. Finally, after four days, a judge ruled that Benny could go home, where he can sleep late if he wants to, play Nintendo with some of the neighborhood children or read a good book.

At first glance, Benny’s story seems to be yet another case of a patient asserting his right to die when medicine can only prolong suffering. The twist is that Benny is still, in the eyes of the law, a child who cannot make such weighty decisions on his own. If he were in his 70s, the decision would seem like a victory: a dignified death with the consolation of a rich life fondly remembered. Benny, however, seems not only too young to die but also too young to want to.

The boy’s mother has made her peace with his decision, and the Florida judge also deemed him suitably mature to make the choice. But Benny’s doctors would like to buy him some more time. Perhaps, they argue, they could figure a way to vary the amount of the antirejection drugs he is taking so the side effects are not quite so miserable. There is also the possibility of yet another transplant. The chances he could survive a year after a third operation, however, are generally considered to be less than 50%. “We proposed trying to rescue his liver,” says Dr. Andreas Tzakis, head of liver transplantation at the University of Miami. “He refused.” One thing is sure: as Benny loses weight, and his skin turns ever deeper shades of yellow, his chances dim with each passing day.

Born with a malfunctioning liver, Benny underwent his first transplant at age 8. For five years, he took a drug called cyclosporin that prevented his body from rejecting the alien organ. When that medicine no longer worked, his doctors at Children’s Hospital in Pittsburgh performed a second transplant in 1992 and started him on what was then an experimental treatment called FK506. Given his long experience, he was probably better prepared than most people for the pain and discomfort antirejection drugs can sometimes cause. He had already outlived most of the children he had met in the hospital while awaiting the initial transplant.

Eventually the side effects, which are poorly understood, proved too much. An avid reader, Benny found he could not scan a book for more than five minutes without a blinding headache. The pain in his joints often kept him from playing with friends. Last year, after thinking about it all summer, he decided to cut back on his dosage. His mother and the rest of his family protested, but by October Benny had stopped taking any medicine at all. And for half a year he lived what he has called “the best months of my life.”

Nevertheless, in the view of transplant experts, Benny had made a mistake. In some cases transplant patients can be weaned from their antirejection drugs, but it must be done under close medical supervision so doctors can intervene at the earliest sign of trouble. If Benny had bided his time, say doctors, he might have had a happier relationship with the transplanted organ. “The longer you have an organ, particularly the liver, the more it becomes a part of you, and you a part of it,” says Dr. Andrew Klein, a liver- transplant specialist at Johns Hopkins Medical School. Transplant surgeons admit they are among the most aggressive at trying to keep death at bay. “Considering the severe shortage of donor organs, I think there is a moral obligation to take care of the organ you receive as best you can,” says Klein. He allows, though, that preserving an organ should not take precedence over preserving some semblance of pleasure in life.

One suspects that in Benny’s case, patient and doctors failed to understand one another’s priorities. Perhaps the boy felt his pain was not being taken seriously enough. Perhaps the medical team misread the young man’s growing determination to choose his own fate. “Often when problems like this arise, there’s a miasma of suspicion about families and how trustworthy they are,” says James Nelson, a medical ethicist at the Hastings Center in New York. Someone from the Pittsburgh team decided to call the child-abuse hot line in Florida to try to force Benny to renew treatment, and the result was the awkward standoff. “That’s the most distressing part to us,” says Tzakis. “We all have the feeling that Benny has slipped out from under us.”

Tzakis has not given up hope that Benny may still change his mind. Several transplant recipients have volunteered to talk to the boy. But after a week spent dealing with lawyers and turning away phone calls from Nightline, People and other national media, Benny seemed weary. “Just tell them,” he said, “I want to be left alone.”