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Giving of Themselves

The use of anonymous organ donations raises ethical questions, but needy transplant centers are warming to the idea, and benefactors are growing in number.

October 02, 2000|BENEDICT CAREY | TIMES HEALTH WRITER

They are the sort of people who volunteer at the soup kitchen and don't expect to be congratulated. Who donate their blood and time and money and don't need any thanks. People who don't want a movie deal or even a mention in the local newspaper.

And now they are stepping forward to give a part of themselves--literally--to someone who needs it more.

"To do something unconditional, that's what I was looking for," says a New England schoolteacher who this year became one of the first people in the country to voluntarily donate an organ--one of his kidneys--to a complete stranger.

He wants to remain anonymous, he says, "because it was meant to be an anonymous gift. It's done, and I honestly don't want to hear from the recipient."

Until very recently, transplant centers turned away such people on principle. Doing surgery on a healthy person violates a doctor's professional oath: First, do no harm. "And there was also the concern that these people might be crazy," says Dr. Alan Wilkinson, director of the kidney transplant program at UCLA School of Medicine. "So we were very reluctant to take them."

But the reluctance is dissolving fast. The University of Minnesota established a program for non-directed (i.e., anonymous) kidney donation last year and since has evaluated about 20 donors and performed seven transplants, including the schoolteacher's. The Washington Regional Transplantation Consortium, which coordinates transplants in the Washington, D.C., area, now has several people who are willing to donate anonymously.

And doctors at many of the country's top transplant centers are debating the idea of openly welcoming and evaluating Good Samaritan donors.

"I think we'll be surprised at the number of people who come forward," says Wilkinson, who supports such an option at UCLA.

The reasons are simple. Waiting lists for organs swell by the thousands each year, and the supply from cadavers has reached a plateau. In 1999, for instance, fewer than a third of the 44,000 people waiting for a kidney got one, and 2,969 died waiting.

At the same time, doctors have become better at performing and managing transplants. For kidney transplantation, the most common procedure, they now routinely take organs from genetically unrelated donors, such as spouses and friends. Once rare, such living unrelated donors now account for about 15% of kidney transplants from living donors.

Most important, it's now clear that the people who want to donate a kidney anonymously are usually certifiably sane. They're not crazy; they are serious. "Stable, upstanding, usually well-educated people," says Cheryl Jacobs, a social worker in the Minnesota program, "who have a history of giving, who donate blood, who genuinely want to help." Chronic do-gooders, one doctor called them.

In a survey this summer, in fact, the National Kidney Foundation found that almost 25% of American adults would consider giving a kidney to a stranger in need; and investigators at the BC Transplant Society have found similar numbers in British Columbia.

"The number of people who would really do it is nowhere near that high, we think," says Sally Greenwood, a spokeswoman for the BC Transplant Society. "But even if it's just 1%, that could be a highly valuable and untapped pool of organs."

And there's the rub, really: How exactly do you tap such a precious resource without looking greedy? Without looking like a scavenger?

The transplant community has established clear rules determining who gets each organ retrieved from a cadaver. Not so for Good Samaritan organs. The field is wide open.

"We had better be very, very cautious with this group of donors and make sure they are coming to us for purely altruistic reasons," says Dr. John Curtis, medical director of the kidney transplant program at the University of Alabama, Birmingham.

The Operation

A TV program is what got the schoolteacher thinking about donating.

A Vietnam veteran, he had spent years as a Baptist preacher trying to make the world right. But all that praise and giving thanks ultimately got in the way of his only desire, he says: "just to do the right thing, and move on."

And now, in the summer of his 62nd year, here was a TV program showing how a transplant gives people with kidney disease new life; how it frees them from continuous hospital visits to have their blood filtered artificially, and painstakingly, during what's called dialysis. The show also mentioned that kidneys from living donors usually last longer than those from cadavers, causing fewer side effects.

"That was crucial for me. I thought, 'Why wait until I'm dead? I'd rather do it now, when I'm healthy. When the kidney is healthy. When I'm alive.' "

He did some research on the subject first. He learned that 80% to 90% of kidney recipients live at least five years; and that due to improved drug therapies that help the body accept new tissue, the organ may function fine for well over 20 years. Dialysis extends people's lives as well, but usually not by as many years.

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