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A Deadly Waiting Game

Ethics Should children in need of organ transplants take priority over adults? Doctors, legislators and advocates wrestle with the question.

November 09, 1998|MARLENE CIMONS | TIMES STAFF WRITER

WASHINGTON — In the dwindling days of the last session of Congress, two men--the fathers of organ transplant patients, one of whom died waiting--brought bouquets of yellow tulips, roses and daisies to Capitol Hill for leaders of the House and Senate.

They were not meant as tributes to the lawmakers; just the opposite, in fact. The blossoms were delivered to symbolize hundreds of waiting patients--particularly children--they believe will probably die because of a congressionally mandated delay in transplant system reforms that previously had been ordered by the Clinton administration.

"All you have to do is not water them for two weeks, and they'll be dead," Charles Fiske, one of the two fathers, told startled congressional aides.

In recent months, there has been much debate about the way the organ allocation system works in this country, making it one of the most controversial and ethically troublesome in medicine.

One theme haunting many of these discussions has been the painful ethical issues related to transplants for children.

Many parents and pediatric transplant experts believe the current system is unfair to children. And they are worried that the situation may not improve when--and if--reforms ever come.

"Children should not have to compete with adults for organs as they do now," says Diane Jones, a Maryland woman whose 4-year-old daughter suffers from a liver disorder and will almost certainly need a transplant. "An adult can be on a waiting list for longer than a child who needs a new liver has even been alive."

The situation regarding children also has raised thorny judgmental issues about who is more deserving of scarce organs. It pits growing children--"a work in progress," as Jones says--against elderly, often sicker patients. Children--who did nothing to bring about their medical need and who often offer the best hope for survival--thus compete for organs with adults, some of whom may have damaged their organs through drug abuse, alcoholism or smoking.

"Children are our best investment in the future," Jones says. "There are people who have, through their own knowing conduct, abused their bodies through drugs or alcohol . . . and are competing with our innocent children for these precious livers. Our children are not sick because of anything they have done."

Others argue that judgmental issues have no place in these decisions.

"We have to make the illness the issue, not the cause of the illness," Fiske says. "The fact is: You're sick, and you need a transplant. Is a 4-year-old child more valuable than the mother of three young children who poisoned her liver with Tylenol?"

Last year, 3,565 children were waiting for transplants in the United States, according to the private, nonprofit United Network for Organ Sharing, which runs the allocation system. That same year, 311 children, or 8.7%, died while waiting. There also were 76,526 adults seeking organs; 4,278, or 5.6%, died while waiting.

The current system ranks all patients, adults and children together, according to the severity of their illness. But it also allocates organs by geographic location, a distinction the Clinton administration seeks to change.

The nation is divided into 63 local areas and 11 regions. When an organ becomes available in one local area, it is first offered to the sickest patients there. If no one is waiting, it is then offered regionally and, finally, nationally.

In March, the administration sought to level the playing field by ordering the organ network to draft a new plan subject to approval by the U.S. government that would rank the sickest patients first nationally, removing a patient's place of residence or place of listing as a factor in determining who receives an organ.

This could have made a huge difference for 18-month-old Jordan Rosebar, whose father accompanied Fiske on his recent Capitol Hill visits. Jordan, from Washington, died in June while waiting for a liver and intestine transplant; two compatible organs were identified in other states but were given to local recipients, even though they were lower on the priority list.

Network Instructed to Revise Criteria

Health and Human Services Secretary Donna Shalala has vowed to change the policy of what she calls "accidents of geography" in transplant decisions and to prevent patients from traveling to hospitals where lists are shorter.

The administration also told the network to develop uniform criteria for deciding which patients earn a spot on the transplant list; currently, each hospital develops its own criteria. Finally, the network must establish a system for ranking transplant patients to ensure that those who are equally sick are given similar status, no matter what hospital they are listed with.

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