Who looks out for the donors?

By Deborah L. Shelton

May 10, 2005

Carol and Wayne Meyer still go to the little neighborhood restaurant in Lyndhurst, N.J., because it holds so many memories for them. J.B. Forbes/P-D)

First Jane Slaght worried about her ailing daughter. Then she grew increasingly anxious about the healthy one who offered her sister a kidney.

Stephanie Slaght of East Smithfield, Pa., went through the donor screening in just a few hours, even though the situation wasn't urgent, her mother said. "I don't want to see hospitals set up assembly lines, and I think that's what's happening," Jane Slaght said. "I'm not against living donation. But donors need to get evaluated, and the evaluation needs to be thorough."

Geisinger Medical Center in Danville, Pa., where the surgery was performed, said in a statement it is "confident that our system of care was appropriate, professional and caring."

As the number of people who have given organs while alive has increased, so have concerns about their safety. More than 71,000 Americans have become live donors - most in recent years. The number of live donors has more than tripled, from about 2,000 in 1988 to nearly 7,000 in 2004.

Many people across the country owe their lives and health to the willingness of others to undergo surgery for their benefit. And many of those donors do well during and after the surgery.

But data are lacking about how live organ donors fare short-term and long-term. And centers are not required to meet uniform standards for screening them before surgery or caring for them afterward.

Jane Slaght is still worrying about both her daughters, because their surgeries in December did not go well.

The kidney that Sarah, 23, received from her sister didn't work after it was transplanted. And Stephanie, 22, developed a massive infection in her incision that still hasn't healed.

The medical center, in its statement, said: "Geisinger physicians and staff met with the donor, recipient and their parents several times before the transplant to explain that the surgeries were major surgeries for both daughters - and, as such, there is always the risk of complications."

Jane Slaght is convinced her healthy daughter's kidney was wasted. She wants the transplant center held accountable. But she doesn't know where to turn.

The federal government does play a role in regulating organ donations - but only those involving deceased donors.

Dr. James Burdick, director of the division of transplantation in the U.S. Department of Health and Human Services, said the government has purposely kept its distance. The National Organ Transplant Act of 1984 doesn't address living donation specifically, and Burdick, a former transplant surgeon at Johns Hopkins Medical Center in Baltimore, said officials are still feeling their way cautiously through a relatively new field of medicine.

Carol Meyer and her husband, Wayne, are among a growing number of living donors who are pushing for greater oversight.

The Meyers, of Orange, N.J., each donated part of a lung to their daughter Lindsey at St. Louis Children's Hospital in 2001. Carol Meyer has since attended transplant conferences and contacted government officials about her experience as a donor and about the lack of monitoring of transplant centers.

"I thought all of these issues were regulated by the federal government," Carol Meyer said. "Who's watching this?"

Hospitals set policies

The government hires a private group, United Network for Organ Sharing, which matches organs from deceased donors with recipients. The organization sets policies and makes recommendations on living donations. But it can't force compliance.

Also weighing in on living donation issues are professional groups such as the American Society of Transplant Surgeons and the American Society of Transplantation, an organization of doctors, nurses, social workers and others.

But their policies, typically issued as consensus statements, also are not binding. Some transplant surgeons don't feel obligated to follow them.

"Why would they be?" said Dr. Arthur Matas, director of kidney transplant at the Fairview-University Medical Center in Minneapolis, which has done more living-donor kidney transplants than any center in the world.

"We all have standards of care in our hospitals."

No transplant center has ever been sanctioned for violating policy, although "one or two" have been threatened with closure, Burdick said. He refused to name them.

In an earlier phone interview, Burdick said professional organizations and transplant center officials should be given wide latitude to determine what policies and practices are best. Advances in medicine wouldn't happen if surgeons were saddled with a lot of rules, Burdick and other health professionals say. They believe that the medical community will act responsibly.

Donors not tracked

Some of the critics of the current system agree with Burdick in many ways. But, they say, donors deserve adequate information to make their decisions about having surgery. And good decisions cannot be made when the system is not even tracking what happens to live donors.

The transplant system revolves around recipients. They often are dying. They are the people the transplant team gets to know. Their insurance pays the bills.

Statistics are collected on every person who receives an organ but not on those who give them. The money to track recipients is included in the federal health budget. No money has been allocated to track every donor.

Because of the lack of information, no one knows how many donors have suffered complications or died.

The United Network for Organ Sharing asks transplant centers to complete follow-up forms on every living donor six months and one year after the surgery. The centers have reported about 37 percent of the donors were lost to follow-up within a year of the transplant. That compares to 1 percent of recipients.

A study for the United Network for Organ Sharing identified 56 kidney donors who later were on the waiting list for kidney transplants themselves. The researchers said they are certain there were more kidney donors who suffered kidney failure.

Part of the problem in keeping track of donors is that many don't live near the center where the transplant took place. The Slaghts live four hours away from the Geisinger Medical Center, where Stephanie donated.

A study by the South-East Organ Procurement Foundation found that a third of donors travel long distances to donate, which makes it difficult to get follow-up care, said Dr. Tom McCune, foundation president.

McCune, a kidney specialist at Sentara Norfolk General Hospital in Virginia, said he believes there are more complications than transplant professionals realize.

Long-term follow-up care for donors usually isn't paid for unless the recipient is covered by Medicare. As a result, donors are unlikely to return to the transplant center for care if complications occur.

No one seems to be willing to pay to make sure donors are healthy after the surgery, said Dr. Robert M. Merion, a kidney, pancreas and liver transplant surgeon at the University of Michigan. "So there are significant practice, as well as financial, barriers to follow-up that need to be grappled with."

Donors often feel abandoned once their organs are removed. As Gregory Pence, a bioethicist at the University of Alabama at Birmingham, explains it, the early stages of donation are reminiscent of a courting process.

"It's very much like surrogate mothers who are made to feel very special during the gestation. Then as soon as she hands over the baby - boom! - the couple that gets the baby doesn't want to have much to do with her, and she feels pretty used.

"I think it's a widespread feeling that the day after the transplant people feel like a piece of meat. But that transplant team has been totally set up to do the transplant; it's not a primary care unit. They're just not trained and set up to care for the donor."

Mid-America Transplant Services, an organ procurement organization in Olivette, said in a statement that its goal is to "ensure that altruistic donors feel valued throughout the donation process." The organization is committed to following up with donors for at least two years, the statement said.

Is self-regulation enough?

Transplant professionals acknowledge that live-donor transplants bring money, publicity, the respect of peers, the opportunity to publish in highly respected journals and other benefits.

For those reasons, people inside and outside of medicine believe someone who is independent needs to insure that donors are protected. Dr. David C. Cronin II, one of the authors of an article in the New England Journal of Medicine in 2001, expressed concerns then about the ability of surgeons and transplant programs to regulate themselves when it comes to liver transplants involving adult donors and recipients. He said little has changed in the intervening years.

Cronin, director of liver transplantation at Yale-New Haven Hospital, and colleagues called for external regulation, "which may include government intervention," to protect live donors.

Greater concerns have been raised about adult-to-adult liver transplantation because it's a newer, more complicated and dangerous surgery than kidney transplants.

Despite the relatively small number of transplants done every year, liver transplant programs have multiplied rapidly. Of the 38 that perform adult-to-adult live donor transplants, 28 did 10 or fewer in 2004. Ten did only one. Yet surgeons need to perform operations regularly to keep their skills sharp.

Dr. Andrew Klein believes self-regulation works because most surgeons follow the guidelines from professional groups.

Klein is director of the Comprehensive Transplant Center at Cedars-Sinai Medical Center in Los Angeles. He also heads the United Network for Organ Sharing living donor committee.

Surgeons respect the work that has gone into developing the guidelines, Klein said. "They want to follow best practices. And they recognize that there are consequences that could accrue if they don't follow them, legally. It could put a career or institute in jeopardy."

"You just want to help"

As increasing numbers of people give away organs, Pence, the Alabama bioethicist, worries about the consequences of what he calls the "normalization" of live donation. Family members, in particular, are under greater pressure to go under the knife when a loved one needs an organ.

"When does it cross from volunteerism into coercion? When does becoming a hero become a duty?" Pence asked.

Removing a kidney has become relatively routine.

"The beauty of live donor kidney transplantation is that people come out of it minus a kidney and they're just as healthy," said Dr. Johann Jonsson, director of the kidney/pancreas transplant program at Inova Transplant Center in Arlington, Va.

The idea that people have an "extra" or "spare" kidney if they were born with two is common. A press release last year from Washington University School of Medicine in St. Louis referred to the kidneys of potential donors as "unused kidneys."

While people can live with one kidney, both kidneys work to filter toxins from the blood. When one is removed, the single remaining kidney will increase in size to compensate.

A Washington University School of Medicine spokeswoman said the psychologist who used the term declined to be interviewed.

Eager to help loved ones - and sometimes, strangers - donors can be vulnerable. They don't always understand the risks, know what questions to ask or think it's possible for anything to actually go wrong.

Donors such as Mary Ann McNulty understand the vulnerability. She donated a kidney to her mother at Montefiore Medical Center in New York and suffered complications.

"You're just so blinded by the desire to help that you say: 'Whatever, let's do it,' because you just want to help your loved one," she said. "You don't ask questions. You don't ask for anything."

Carol and Wayne Meyer thought their daughter was going to get the lung transplant she needed from a deceased donor. Once they said they would consider becoming live donors to Lindsey, 17, who was born with cystic fibrosis, they said they felt like the transplant staff pushed them in that direction.

Carol and Lindsey moved temporarily to St. Louis from New Jersey to be in the best position for a transplant at St. Louis Children's Hospital.

Lindsey's medical records showed that she didn't want her parents to be donors because she thought it would be unfair to her two brothers. A lobe from two individuals is needed for a live donor lung transplant.

The Meyers said they felt pressured. Notes in Lindsey's medical files show that the Meyers tried to put off becoming donors in the hope that a deceased donor would become available.

Within two weeks, Lindsey's parents had the surgery. Lindsey never regained consciousness after the surgery and died several weeks later.

Medical records note that a pulmonary vein attached to the portion of lung Carol Meyer donated was too short. The hospital would not comment on the surgery.

"I can accept her death, I can accept the loss of my lung and my husband's, all that was in God's plan. But I hope out of this comes a way to improve the system," Meyer said, still visibly hurt by the experience four years later.

Dr. Stuart Sweet, medical director of the pediatric lung transplant program at Washington University School of Medicine and St. Louis Children's Hospital, would not comment on the Meyer case specifically. But he said he wants families to hear all the options.

"I sit down with a family and review the information, and if I think there's a chance that child won't survive long enough to get a cadaveric transplant, I say 'Hey look, we have to have an insurance policy. This is a reality. So we have to talk it out, leaving living donor transplantation as an option.' I tell families this is not for everybody. It's a big commitment. It's not easy. But it's something that's out there and if you're interested, this is how to go about it."

He said it would be worse not to offer families the information.

"I'd much rather take the risk that I make a family feel pressured than to pass up a family having an opportunity to gather their resources together to make that decision and make it happen. That's an easy decision for me," he said.

The pressures families feel can continue after the surgery. When donors experience problems, some feel like they can't talk openly about them.

They don't want to hurt the recipient's feelings. They don't want their loved ones to think they regret donating to them. And they don't want to give donation a bad name.

These are people who see themselves as rescuers. They don't easily ask for help.

If transplant professionals wait for the donors to come forward, they may never find out about problems.

In the end, it may be family members who push the medical community into implementing better safeguards for donors.

Reporter Deborah L. Shelton

E-mail: dshelton@post-dispatch.com

Phone: 314-340-8203

Copyright © 2005, St. Louis Post-Dispatch

This article posted June 20, 2005.