Directed organ donation is legal, but is it right?

Spurred on by a Houston man’s successful quest to obtain a new liver via billboard and internet advertising, as well as similar efforts by others that quickly followed, the organization that oversees organ distribution in the United States is pushing hard for a change – one it says is desperately needed to stem a rising tide of private organ solicitation that threatens to erode a delicate system.

The case of Todd Krampitz, a 32-year-old man who was diagnosed with severe liver cancer in May but who received a new liver after pleading his case publicly, prompted the United Network for Organ Sharing in November to strongly recommend that hospitals discourage patients from soliciting organs and to even refuse to perform such transplants. Krampitz, who purchased billboard space along two busy freeways last summer while simultaneously launching an effort on the internet, garnered national attention for the unprecedented request. His message, “I need a liver. Please help save my life!” was received, and a short time later, Krampitz received an organ from an out-of-state family who had heard of his plight. The operation was performed at in . Krampitz, whom doctors only months earlier had deemed too sick for transplant, had gotten his new liver. So all’s well that ends well, right? Not exactly.

A hue and cry

Not long after Krampitz’s outdoor advertising campaign and cyber search got under way, people began to question his methods. Transplant surgeons, medical ethicists and particularly those waiting on transplant lists for UNOS-distributed organs charged that Krampitz’s efforts threatened to undermine a 20-year-old system that had been established precisely for the purposes of ensuring fairness among organ donors and recipients. Krampitz, they said, had in effect cut to the front of the line, depriving someone of an organ – someone who had followed the rules and worked within the system despite the rather scary statistic that up to 25 percent of those on transplant lists for livers die while waiting for their “gift of life.” Krampitz’s wife, Julie, declined comment for this story except to say that she prefers to focus only on organ donation and not on “any controversy” resulting from their mission to save Todd’s life. “If everyone would focus on the true underlying issue of increasing organ donation awareness and drop the controversy, the story would be much more touching and effective. What organ donation awareness lacks is putting faces and personal stories with a need. Blood donation awareness is done so effectively because their commercials show real people (whose) lives were saved because someone donated blood,” Julie Krampitz says, adding that her husband is “doing well” since his transplant.

After receiving the organ, the Krampitzes put up a new billboard saying “Thank You” and encouraging more people to consider organ donation. In the wake of their successful campaign, others in need of organs followed suit, inundating the internet with similar pleas. Meanwhile, UNOS was meeting to discuss the solicitation of organ donations through advertising, voting nearly unanimously in the end to condemn such efforts and calling on hospitals and transplant surgeons not to perform those surgeries. While nonbinding, meaning they cannot force hospitals and doctors to comply with their wishes, the vote was praised by many in the medical community, including ethicists who say the existing system for ranking patients in need of organs is the best way to ensure fairness.

Jumping the line

Dr. Arthur L. Caplan, a leading ethicist and chairman of the department of medical ethics at the University of Pennsylvania, says directed donation of a loved one’s organ(s) to a family member or close friend as it was intended, whether cadaver or living, is not the problem, but, rather, that it is the solicitation of organs from total strangers through advertising that’s creating the outcry. “We’re basically talking about how to move organs around among people who don’t know each other and aren’t related; that’s where the ethics are,” Caplan says. “In cadaver donation, I think there’s a system that already exists that works, and I think that people should be made to follow it. They may have to toughen up the rules a bit to force compliance, but I think that’s the way to go because, otherwise, you’re going to wind up killing people. The organs will be shipped around and go bad and lives will be lost.”

Caplan says he believes Krampitz “jumped the line” when he solicited and received an organ from a cadaver. “If he had wanted to put up a billboard and say ‘Give me one of your kidneys,’ then I can’t say that’s jumping a line because there isn’t any type of (national) system or set of protocols for (living donors),” Caplan says. “There are really two different activities going on. One (involves living donors and the other) involves people who want to designate a cadaver donation to someone in need. And that, I think, is a terrible idea.”

He says the national transplant network, established to oversee the distribution of organs based on a variety of factors, including the condition and location of the patient, was set up because hospitals of the day were sequestering organs for use in their own patients, and people were dying as a result because there was greater need elsewhere. The goal of UNOS, Caplan says, was to make certain donated organs go to those patients who would most medically benefit. “So we set up this whole system to make things fair. That’s the whole UNOS-run allocation system, which basically pays attention to physiological factors like blood type and tissue type and then urgency and time spent on the waiting list and other factors that are more medical than anything else,” he says. “If you start saying, ‘I’m going to send this cadaver donation to someone who put up a billboard or to my fellow member of the Knights of Columbus’ or something, the problem becomes that you have to ship these organs, and you don’t have a lot of time to do that. You’re risking real loss of the organ.

“And you’re also undercutting a system that has worked very well to make sure that everybody has an equal chance,” he adds. “So I am very, very, very critical of anything that proposes to allow people to jump to the head of the line in the cadaver pool. I don’t think it’s fair to the poor, and I think it risks losing organs and is just wrong for a number of reasons. Directed donation from cadaver sources, it seems to me, is immoral and even lethal because you can end up killing people.” Caplan concedes, however, that while he believes it is wrong ethically, directed cadaver donation among strangers is not illegal, hence the need, he believes, for binding action by UNOS and the nation’s transplant surgeons. Directed donation among family members and those with strong emotional ties is allowed under the Uniform Anatomical Gift Act, federal legislation enacted in 1968 and revised in 1987 to harmonize the organ donation laws among the 50 states. Caplan says he has no problem with that.

A surgeon’s view

Caplan is hardly alone in his call for action. Dr. R. Patrick Wood, a transplant surgeon at St. Luke’s Episcopal Hospital in Houston and former board member of UNOS, currently sits on the board of LifeGift as its southeast regional medical director. He agrees with Caplan in that he believes what Krampitz did and what others are doing undermines the system and is simply “unfair” to others. “The whole premise behind directed donation was to allow people who have an emotional relationship with the person waiting for the transplant or their family to allow them to direct a donation based on that personal relationship,” says Wood, who also sits on the board of Hepatitis magazine. “It was never the intention of the Uniform Anatomical Gift Act to provide livers to the person who has the best advertising.”

Wood says that in the past, a family member would direct a donation of a liver, for example, but then their loved one’s other organs also would be harvested and used to help other people. And it was less than 1 percent of people, he adds, who were taking advantage of this type of organ donation. “But I think if everyone goes out and starts to advertise, it is not in the spirit of the concept of directed donation,” Wood says. “I think that UNOS is going to have to put some regulations in place to either prohibit directed donation or to limit it only to people who do have that emotional relationship with their donor and not to somebody who has just read about somebody’s story on the internet.

“I think if there’s going to be a way to end-run the system, then in order to maintain confidence in the system, we may have to put processes in place to eliminate that loophole,” Wood says. “I also think, however, that if I had a relative on the transplant list and one of my family members died, it should be my right to donate to that person because I have an emotional attachment to that person. But as far as who can advertise best, obviously that’s not in the spirit of what we’re talking about. If all 80,000 or so people on the waiting list all had internet sites, you can imagine that it would be somewhat chaotic.”

In the meantime, the 80,000-plus people on waiting lists throughout the country will continue to wait for viable organs as the debate over the system and what is fair to everyone continues as well, swirling its way through the halls of academia and the various medical institutions and winding up ultimately, should a resolution not be met first, in the halls of Congress. “I would hope that we wouldn’t have to go back to Congress and plod through the whole system again because of all the time that would take,” Wood says. “It needs a solution relatively quickly and, as we all know, Congress runs at a pace where it may be several years before we get anything out of them.”