A Deadly Waiting Game

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.

But critics point out that sometimes transplanting the sickest patients--who may require second or even third transplants or who may die anyway--might not be the best investment of scarce organs. And advocates for children point out that they--because they are young and often otherwise healthy--often represent the best opportunity for long-term survival.

“The problem that we worry about with a national list is that if you will always transplant the sickest person first, you will end up transplanting some people who will die,” says Dr. Sue McDiarmid, a pediatric gastroenterologist at UCLA Medical Center who chairs the pediatric committee that advises the organ network.

“Justice would say that the sickest person gets the first organ,” she says. “Utility would say put the organ where it will do the most good for the longest period of time. It’s a very tough issue. . . .”

The organ network has been fighting the government proposal. Congress--siding with the network--included a provision in its recently passed federal budget package that imposed a yearlong moratorium on the administration’s proposal, pending further study.

Children’s Advocates Concerned Over Status

Regardless of the outcome, however, the administration’s original directive made no mention of special treatment for children, an omission that worries many within the pediatric transplant community who believe that children should be dealt with separately.

Current allocation policies, which are voluntary, do give extra weight to children in certain situations, but critics claim they do not go far enough. Many seek a policy requiring organs from pediatric donors be given to other children; often these organs go to adults.

“Pediatric patients can’t live long enough on a waiting list to get high enough and compete with adults, and nothing has really been done to address that,” says Dr. Paul Colombani, chief of pediatric surgery for Johns Hopkins Medical School in Baltimore.

“Adult transplants have been using smaller and smaller livers for adult patients,” he adds. “They are now using organs from donors as young as 8 for 50- to 60-year-old recipients.”

In Oregon, for example, where there is no pediatric transplant center, children must travel elsewhere for transplants--if an organ becomes available for them elsewhere--often to San Francisco, the nearest pediatric transplant center.

At the same time, organs from pediatric donors in Oregon often go to adults there, says Craig Irwin, a spokesman for the National Transplant Action Committee, a transplant patients’ advocacy group in Portland.

“An adult would have the first shot [at an organ from a pediatric donor], even if an Oregon child needed it,” he said.

A research paper analyzing liver transplants, written by doctors at the Medical University of South Carolina and staff from the organ network, was presented in May at the annual meeting of the American Pediatric Surgical Assn. It showed that, while the number of pediatric liver donors increased from 800 in 1990 to 936 in 1996, the number of children who have received a donated liver from another child decreased from 379 in 1990 to 306 in 1996.

Fiske, of Brookline, Mass., whose daughter Jamie received a liver transplant 16 years ago in a nationally celebrated case, believes children “should be regarded as a separate entity” and should have priority when organs from pediatric donors become available.

“We think a child should get it first,” says Fiske, whose daughter--now nearly 17--was 11 months old when he made a national appeal for a donor organ, before the current system was established. The family of another child, a baby in Utah killed in a traffic accident, saw Fiske’s plea and offered their son’s liver.

A Complicated Medical Question

McDiarmid agrees that every effort should be made to have pediatric donor organs go to children, saying that her committee is working to draft such a policy. But she says policy is complicated by the fact that certain children’s donor organs, such as kidneys, don’t work as well in pediatric transplant patients as adult donor kidneys.

“It depends on the organ,” she says. “One of the things our committee is doing is looking at where donor organs from middle-sized kids go. Do they go into adults? If so, we don’t think that’s right. We would really like to figure out a way to preferentially have the middle-sized livers, from 5- to 12-year-old donors, placed into children. We are working on that. Crafting a policy, though is tough. It gets really tough, because a lot of adults die while waiting, too.”