Most Hospitals Avoid Donors Who Want to Help Strangers, Wary of Motives and Fearing That the Neediest Aren't Served
By LAURA MECKLER
December 26, 2007; Page D1
Each year, hundreds of people decide they want to donate a kidney, not because someone they know needs a transplant, but because they want to help and don't care who benefits. But the desire to give can be hard to fulfill because many hospitals won't accept altruistic donors, and there are few resources to help donors navigate their options.
The hospitals' reluctance grows from concerns that these potential donors may be psychologically unstable, likely to change their minds and, perhaps, secretly paid for their kidneys. Given the risks of the surgery, which are small but real, some argue that it makes little sense for a stranger to donate a kidney.
"If someone really wants to help society, they can go work in a soup kitchen, they can join the Peace Corps, they can do a lot of things that don't put their lives at risk or implicate a [transplant] center," says Timothy Pruett, a kidney-transplant surgeon who is president of the United Network for Organ Sharing, which oversees transplantation under a government contract. His hospital, the University of Virginia, has handled just three of these donors, all in recent years.
Advocates of altruistic donation look at the UNOS transplant list -- where nearly 75,000 people are waiting for a kidney -- and argue that the nation needs every willing kidney it can get. Amid pressure to do more transplants, a few hospitals are starting to loosen their policies. A handful of online and other services have also sprung up that help match would-be donors with strangers in need.
But for the most part, such donors find that few hospitals are willing to take them. Garet Hill, a consultant from West Islip, N.Y., decided to help recruit altruistic donors after his 11-year-old daughter received a kidney from her cousin. He has created a matching service called the National Kidney Registry to help potential donors find a hospital that will take their kidney. Up and running for only about two months, the registry has received about 200 inquiries, most of them from people who said they were interested in donating anonymously to anyone who needs it. Of those, about 10 people have sent back follow-up paperwork so that Mr. Hill's group can make inquiries with hospitals.
The group has found that while some hospitals "welcome us with open arms," many aren't interested. "We had one hang up last week," Mr. Hill says. "What we're finding is odds are most transplant centers will not welcome you as an altruistic donor."
Over the past decade, more than 450 people have become anonymous donors. (Other altruistic donors have sought a stranger out for purposes of donating a kidney, but those numbers aren't tracked.) Many more have begun the process, but have been ruled out on medical or psychological grounds, or changed their minds. It's a tiny sliver of total live organ donors -- out of 6,400 living kidney donors last year, just 68 were anonymous -- but they raise particularly complex questions for both donors and hospitals alike.
The first question for would-be donors is who should receive the organ. They have two options: approach a hospital and offer their kidney to any needy patient, or hunt a worthy recipient on their own -- typically online. Both make transplant surgeons uncomfortable.
Ducking the Waiting List
For one, the waiting-list system is set up to allocate organs fairly, basically targeting the neediest and best-matched patient first. But allowing people to find donors online gives an advantage to the savviest recipients -- those best able to craft a heart-stirring online plea, and in some cases, those able to pay a Web site's fee.
One Web site, MatchingDonors.com, charges needy patients $295 to post their appeals for 30 days or $595 for a lifetime posting. Would-be donors can peruse the profiles and pick who they like best. "Help for a pastor's wife!" headlines one recent posting. "Learning disabled woman needs miracle kidney," says another.
A survey published this year in the American Journal of Transplantation found that just 30% of transplant programs would consider a donor who was solicited through a Web site or other media outlet. "I can't stop people from making connections over the Internet," says Gabriel Danovitch, medical director of the kidney-transplant program at the University of California-Los Angeles. But he won't consider them at his hospital, fearing that online matching services "end up distorting the system."
Still, this approach appealed to Tom Simon, a 37-year-old Federal Bureau of Investigation agent in Chicago, who decided to donate a kidney after reading about living donations. He considered giving anonymously but had misgivings. "What if my kidney wound up inside a real jerk?" he says. He decided he wanted his kidney to go to someone young who lived a healthy lifestyle.
Mr. Simon went to MatchingDonors.com and read the post for Brenda Lagrimas, who worked as an advocate for domestic-violence victims in Chicago. "My wife and I discussed the morality of 'playing God' and deciding who lives and who dies," he later wrote on a blog chronicling the experience. "Finally, I decided to go with Brenda for the following reason: if I had let the hospital pick my recipient, I would've hoped that the recipient's personal story be just like Brenda's story."
Mr. Simon and Ms. Lagrimas had no problem finding a hospital in Chicago for the transplant, which was done last April. Not so for Gabriela Lacabe, a 35-year-old preschool teacher who lives outside of Los Angeles. Ms. Lacabe, sick with kidney disease since she was 9, went online and found a 23-year-old nursing student from Alaska willing to give her a kidney. But her transplant center, UCLA, wouldn't consider the transplant. They tried St. Vincent Medical Center, but when St. Vincent learned that UCLA had rejected the donor, it did the same, according to David Lacabe, Gabriela's father. (St. Vincent couldn't be reached for comment.) Finally, the donor was approved by Cedars-Sinai Medical Center in Los Angeles, and the transplant was done in June.
One way around the ethical dilemma is to give anonymously to someone on the UNOS waiting list, an approach that appealed to Jim Falsey, now 62, a Catholic priest in Au Gres, Mich. He couldn't have imagined choosing the recipient himself. "How would you decide you're going to give to John and not to Mary?" he says.
He became interested in donating after his brother, Tom Falsey, donated one of his kidneys to a stranger. In fact, five members of Tom Falsey's extended family have donated kidneys: Two gave to Mr. Falsey's nephew (who needed a second transplant after the first replacement kidney failed), and three gave to strangers after learning about the nephew's struggle.
Jim Falsey says the decision was sealed for him during the Christmas season, when he read John the Baptist's admonishment that a man with two coats should give one to someone with none. The analogy to kidneys seemed obvious to him.
But donating to a stranger wasn't simple. Mr. Falsey's first-choice hospital, the University of Michigan, "hemmed and hawed" and appeared uncomfortable with the situation, he says. He did some initial testing, but they kept telling him to call back, and when he did, he says, they would put him off again. Frustrated, he tried another hospital where the donation was successfully done in 2004.
Krista Hopson, a spokeswoman for the University of Michigan, says the hospital has no policy automatically excluding anonymous donors, but she had no information on Mr. Falsey's case.
Of 166 hospitals that have performed kidney transplants, nearly one-third have never used an anonymous donor, and about half have done so three times or fewer, according to UNOS data. The survey in the American Journal of Transplantation found that about 40% of transplant centers will not accept stranger donations.
One of the concerns that transplant surgeons and others have about altruistic donors is that such people may be psychologically unstable and unrealistically hopeful that donating a kidney will change their lives for the better. There is near-universal agreement that these potential donors need particularly careful screening to make sure they are both physically and mentally healthy.
At UCLA, the program doesn't have enough staff to thoroughly screen potential anonymous donors, knowing that few will ultimately become donors, says Dr. Danovitch. Research at the University of Minnesota, the national leader in anonymous donors, found that of 360 inquiries between 1997 and 2003, just 42 went through the mandatory in-depth medical and psychological evaluation and only 22 transplants resulted.
There are no national rules governing who receives altruistically donated kidneys. Most hospitals that accept such donors say they simply give the kidney to the first person on the waiting list at their own center, without looking to see if there is someone who is a better match or has been waiting longer at a neighboring hospital. The United Network for Organ Sharing, which sets rules for the distribution of deceased-donor kidneys, has talked about setting rules for distribution of anonymously donated living-donor kidneys but has yet to do so.
'The Almighty Dollar'
At hospitals that are starting to allow altruistic donors, part of the incentive is financial, says Russell Wiesner of the Mayo Clinic Transplant Center in Rochester, Minn., which he says has lowered its standards and now takes a variety of donors who might have been nixed before, including altruistic donors. "The almighty dollar speaks loudly," says Dr. Wiesner, a professor of medicine. "Rewards and salaries are linked to how many [transplants] you do and how much money you make for the clinic."
There's also emotional pressure to approve donors. For years, Beth Israel Deaconess Medical Center in Boston wouldn't consider any altruistic donors, says Douglas Hanto, chief of transplantation. Then a longtime patient "ran out of other options" and decided to look for a donor online, and the hospital decided they didn't want to force him to go elsewhere.
The man wound up finding a cousin to donate, but the policy was changed, and Beth Israel will now consider altruistic donors. The hospital has yet to knowingly use an altruistic donor, Dr. Hanto says, though he found out after the fact that two patients had met their recipients online and lied about it.
Dr. Hanto still thinks there are good reasons to screen out these donors. But, he says, some of our patients felt "our position...was just a little bit too dogmatic, and a little too arbitrary."