Which Life Should Be Saved?

By Claudia Wallis

A shortage of transplant organs raises ethical questions

Jamie Fiske, 11 months old, had one thing in common with three-year-old Justine Pinheiro, and that disappeared on an operating table in Minneapolis. On Nov. 5 the baby daughter of Charles and Marilyn Fiske of Bridgewater, Mass., underwent six hours of surgery that gave her a new liver and a good chance to recover from biliary atresia, a congenital liver defect that generally leads to death before the age of four. Justine Pinheiro is still waiting for a transplant to give her the same chance. The disparity in their fates raises one of the thorniest ethical questions facing modern medicine.

Jamie Fiske had received her liver because of a remarkably skillful publicity campaign launched by her parents. Says Charles Fiske: "We thought we had a license to make Jamie's needs known by any means we could." As a hospital administrator, Fiske knew just where to turn. He telegraphed 500 pediatricians. He placed an appeal in a newsletter that reaches emergency room staffs in 1,000 hospitals. Then, with lobbying assistance from Senator Edward Kennedy, House Speaker Tip O'Neill and CBS Anchorman Dan Rather, all of whom he contacted, Fiske persuaded the American Academy of Pediatrics to allow him to make a plea before 1,000 academy members at their annual meeting in New York City. "I ask you to keep your eyes and ears open for the possibility of a donor," urged Fiske, the only layman ever to address the group. "Jamie wants to survive."

The tactic worked. Fiske's plea was covered by all three networks and newspapers across the country. The families of some 500 would-be donors phoned the University of Minnesota Hospital, where Jamie lay waiting. Two offers turned out to be useful. One, a liver from a three-year-old on the East Coast, was not suitable for Jamie, but it saved the life of an older transplant patient at the Children's Hospital of Pittsburgh. The second organ came from a ten-month-old boy killed in a car-train collision in Utah. His father, Laird Bellon, had seen Fiske on television and specified that his son's liver should go to Jamie.

No one could begrudge a dying baby the means of survival. But Debbie Pinheiro, Justine's mother, admits, "We really get jealous over it." Debbie, 20, and her husband Jose, 24, a welder, have tried to match the Fiskes' effort to focus attention on their daughter's plight. The Pawtucket, R.I., couple have also petitioned their Congressman and been headlined on the front page of the Providence Journal. "I hope that the same thing that happened to the Fiskes happens to us," says Justine's mother. "I'm nobody important, but I'm determined to fight."

Distraught parents and relatives have to resort to publicity because of an acute shortage of organs for transplants. Less than 1% of all Americans die under circumstances and at ages that leave their organs viable for transplant, and not all of these organs become available. Transplant surgeons bitterly complain that doctors have little interest in "harvesting" organs from their brain-dead patients. Last year thousands of Americans died while waiting for kidney transplants. At Stanford University Medical Center, about one out of three candidates for a heart transplant dies before a suitable heart becomes available. At New York's Montefiore Medical Center, 25 out of 30 patients have died over the past two years while waiting for a new lung. Infant donors are rarest of all. "Pediatric organs are more priceless than gold," says Brian Broznick of the University of Pittsburgh Transplant Foundation.

Transplant surgeons therefore are often grateful for the power of the press. Says Frank Veith, head of Montefiore's transplant team: "Only the media can get the message out." Scholars of medical ethics, however, are disturbed by the role the media can play in determining which patients live or die. "I wouldn't recommend it as a way to run a culture," says Dr. John Fletcher, assistant director of bioethics at the National Institutes of Health, "but the trend seems to be that whoever gets the most publicity gets to live." After the Fiskes' example, there may be "an avalanche of similar cases," predicts Willard Gaylin, president of the Institute of Society, Ethics and Life Sciences at Hastings-on-Hudson, N.Y. But what happens when the press tires of the same old transplant story? Do latecomers lose out?

Trying to obviate such ethical questions, the American Medical Association has issued guidelines stating that organs must be allocated to patients on a medical basis alone: "Social worth is not an appropriate criterion." Instead, the basic considerations are who needs it the most and who is the most likely to do well with the particular organ that is available.

The ethics of Jamie Fiske's case were complicated by two facts: her parents had the resources and skills to find their own donor, and the donor's family specified that the liver of their child should go to Jamie, and Jamie alone. Once the organ was made available, doctors did use the A.M.A. guidelines. There were four babies at Pittsburgh equally suited to the transplant, but none had a greater need than Jamie. In addition, doctors at Pittsburgh were already busy with a liver transplant and could not handle a second one. "If another child had been in greater need, we would have had a dilemma," says Jamie's surgeon, Dr. John Najarian. "I would have felt compelled to call the Bellon family and say, 'We have a child who needs it more.' But if the donor still wants to designate a recipient, that's that. His choice is final."

Another dilemma would have arisen had there been a baby whose medical needs were equal to Jamie's. In that case, states Najarian flatly, "the liver should go to the child whose parents made the effort to get the organ." Not everyone agrees. James Childress, a professor of religious studies at the University of Virginia, says, "The moral decision should hinge on who had been waiting the longest, or even decided by lottery." Everyone does agree on one thing. As Jane Van Hook, Minneapolis' donor coordinator, puts it, "If more people were attuned to providing organs, the ethical considerations would not arise." Nor would families feel compelled to become press agents for suffering loved ones.

--By Claudia Wallis.

Reported by Joelle Attinger/Boston and Patricia Delaney/Chicago

With reporting by Joelle Attinger, Patricia Delaney

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