Melissa Larson watched the rain outside a Harley-Davidson dealership in Elk River, where a silent auction and motorcycle ride were held in June to raise donations to pay her medical bills. But few people showed up on the cold, rainy day. Larson, who suffers from end-stage kidney disease, has daily dialysis as she, her friends and family search for a donor. Medical ethics don’t allow her doctor to help find a donor.
By Josephine Marcotty, Star Tribune
Last update: October 1, 2009 – 7:14 AM
Cathy Garvey dropped a stack of red folders on the table as a huge image of two kidneys flashed on the conference room screen.
She flipped open the first file: A 27-year-old woman with no children who wants to give a kidney to her father — for his third transplant. “She’s a great candidate,” said a doctor across the table.
A second pair of kidneys appeared on the screen. They belonged to a 55-year-old man who would rather donate to his sister than go to her funeral. “We can sacrifice this one,” said another doctor, pointing to the left kidney.
The third candidate was a firm no. A farmer, a rare perfect match to a 15-year-old boy on dialysis, couldn’t give up a kidney because his medical screening revealed high blood pressure. Garvey set his folder aside. “That’s too bad,” she told her colleagues. “That kid has been looking and looking and looking.”
Every Monday at noon these doctors, nurses and social workers meet at University of Minnesota Medical Center-Fairview to decide who can save a life and who can’t. They are reluctantly playing the role thrust upon them by their own success — that of gatekeeper.
Yet despite a revolution in transplant medicine, an epidemic of kidney disease that costs the nation $33.6 billion a year, and with 80,000 patients on the national waiting list for a kidney, there are few rules to guide them.
Committees like this at more than 200 other transplant centers across the country are writing the ethics book of living donation case by case, patient by patient — on their own.
They balance the unknowable risk to a donor against the all-too-certain outcomes of end-stage kidney disease — death or dialysis.
‘The need drives all of it,” Garvey said.
Melissa Larson, 40, is a case in point. In the two years since the single mom from Monticello began searching for a donor, 88 people have stepped forward to give her a kidney. The university hospital tested, considered and rejected every one of them.
Larson is an extremely difficult match. Thanks to a previous transplant, surgeries and two pregnancies, her body will reject almost all kidneys. As a result, few of the donors even got far enough to get a review by the committee.
“In Melissa’s case, it’s not a shortage of people,” said her transplant surgeon, Dr. Ty Dunn. “It’s compatibility. She’s not been lucky enough to find that needle in a haystack.”
Two years ago, a needle emerged. Her cousin.
When she found out that her cousin was a match, Larson was so happy she went out and bought a Harley-Davidson motorcycle in the belief that she would be freed from the prison of dialysis. But her cousin was overweight, and the university doctors feared she was at risk for diabetes. The committee said no.
Larson was crushed. But she also knew that the doctors were right — putting her cousin at risk was far too great a price.
“I told her she had to take care of herself,” Larson said.
Rules vary
At another transplant center, the answer might have been different.
Although the federal Medicare program, which pays for most kidney transplants, requires hospitals to put would-be donors through rigorous medical and psychological evaluations, each transplant center sets its own rules on whom they accept.
“Every center has their own little rule book,” said Dr. Andrew Posselt, a transplant surgeon at the University of California, San Francisco medical center. “And there are always exceptions.”
The Mayo Clinic in Rochester, for example, is more likely to approve a donor with high blood pressure. Hennepin County Medical Center is more open to overweight donors. The transplant center at the University of California, San Francisco, one of the nation’s largest, will consider donors who are obese. Some centers have age limits, others don’t.
Competition between transplant centers is fierce. Minnesota, for example, has four hospitals that compete for kidney patients and organs. If one transplant center changes its standards, sooner or later the others often follow.
One reason is that everyone, except perhaps the living donor, benefits. Patients fare better because kidneys from living people tend to be better quality than those from the deceased. The doctors have more control over the complex surgeries. Hospitals, for their part, make more money.
Medicare pays an average of $106,000 for a transplant, regardless of whether the kidney comes from a living or deceased donor. And living donor transplants generally cost less — about 15 to 20 percent less at the university hospital, for example. That means the hospital stands to make 15 to 20 percent more per surgery.
In short, all the incentives favor accepting donors rather than turning them away, said University of Minnesota bioethicist Jeff Kahn.
“One thing that everyone knows is you make money by transplanting, not by not transplanting,” he said. “Not to mention that you help people.”
Shifting sands
Nevertheless, taking a kidney from a living person presents daunting ethical questions.
In the early days of transplant medicine, things were simpler. Only genetically related relatives were accepted as donors. But family dynamics are complex; doctors and hospital social workers sometimes had to find ways to say “no” on behalf of reluctant relatives who couldn’t find the courage to say no themselves.
“There’s much more coercion in families than outside of families,” said Dr. Stephen Textor, a kidney specialist at the Mayo Clinic.
In other cases, saying no was next to impossible.
“The people who really pushed it? Spouses,” Garvey said. “You have your husband sitting in front of you, dying. They were telling us, ‘Who are you to tell me I can’t be a donor?’ They were right.”
Soon transplant centers erected a firewall between donors and their intended recipients. Donors got their own medical team and were interviewed at length about their motivations. If they decided to drop out, the patient was never told why.
Meanwhile, scientists were making advances in anti-rejection drugs, and research showed that genetic matching wasn’t essential. The circle of acceptable donors expanded rapidly to include so-called emotionally related people — spouses, friends, lovers, co-workers.
But as the science got better, the ethics got harder.
“We really thought twice about co-workers,” Garvey said. “Especially if one was the supervisor of another.”
Uncharted territory
Then, about 10 years ago, a donor showed up on the university’s doorstep with a shocking proposal. He had been turned down repeatedly by other transplant centers, but he wouldn’t go away until the committee agreed to take him seriously. He didn’t have a sick spouse or sibling. He wanted to give his kidney to a complete stranger, someone who had sent out a public appeal.
He was the first of the altruistic donors.
In the end, the patient was ruled out for medical reasons, but he inspired the university transplant center to rewrite its ethics playbook yet again. They decided to accept donors who were willing to give their kidneys to anyone who needed it. Psychologists at the university hospital adopted a 600-question test to make sure such donors were mentally competent and motivated purely by altruism. In an effort to be scrupulously fair, doctors and bioethicists decided their kidneys would go to the patient at their center who had waited the longest on the deceased donor waiting list.
At the time, others in the transplant community were aghast. Most believed that someone willing to give a kidney to a stranger had to be mentally or emotionally vulnerable, Garvey said.
“There was a lot of pushback,” she said. “Some of it was just plain mean.”
This year, the university completed its 50th altruistic donor transplant. Now, such “non-directed donors” are widely accepted. Around the world, countries have begun reexamining laws that prohibit “non-directed” donation.
Today, national guidelines recommend that transplant centers do what the university hospital did with the first altruistic donor — give the kidney to the patient who has been waiting longest.
But that’s not always what happens.
Dr. Michael Rees, a surgeon at the University of Toledo, said his first altruistic donor was a determined young woman who wouldn’t take no for an answer. Under those guidelines, her kidney should have gone to an elderly patient who, even with a transplant, would probably have died within a few years.
Instead, Rees gave her kidney to a patient who was a better genetic match — a young father of two.
“I’m not God,” Rees said in an interview. “It shouldn’t be at my discretion. We should as a society figure out what the rules are. But that’s not how it is. Not for living donation.”
Playing God
This year, the science and ethics shifted again. A massive study led by University of Minnesota researchers showed that people who were healthy when they donated a kidney lived just as long as people with two kidneys. It was the first major study to examine the lifelong risk of giving a kidney.
Debates now are no longer about relationships. They are about the health of the donor. As the population gets fatter, older and sicker, so do donors. Transplant centers are increasingly accepting donors who just a few years ago would have been deemed too risky a candidate.
Textor, the Mayo Clinic kidney specialist, believes that they are still too cautious. “Donors are not afraid of the risk,” he said. “Doctors are afraid of the risk.”
That concern is evident at Garvey’s weekly committee meetings.
The discussion always moves fast. A rotating set of doctors, nurses and social workers step in and out of the room as kidneys of the would-be donors — their patients — go up on the screen.
As Garvey presides, two social workers relate stories of extraordinary generosity.
A 47-year-old woman wants to give a kidney to the husband of a young co-worker who cries every day in her office cubicle. The donor has little education, no teeth and is overweight. She carries excess fat around her middle, making the surgery more risky. She also smokes.
But she really wants to be a donor, said Cheryl Jacobs, one of the social workers. Maybe it will be the incentive she needs to lose weight and quit smoking. “She started the patch today,” Jacobs said.
They decide to wait and see how she does.
A man wants to donate to his sister, but he has a history of depression. He smoked marijuana as recently as February, and in the past he has used methamphetamine. Around the table, heads shake. This is a tough call.
“If you don’t, does that make him more depressed?” Jacobs says. “Or, after the surgery, could he get worse?”
They decide to refer him to chemical dependency treatment.
The next one is an even tougher call. A man wants to give a kidney to his wife’s best friend. He has already been turned down by the Mayo Clinic for severe depression and by Abbott Northwestern Hospital for high blood pressure.
But the group is impressed by his determination, and, if they say yes, the surgeries would be done at the university hospital.. Maybe the chance to do good would help cure his depression, Jacobs says. “It’s hard not to be paternalistic,” she notes.
They end the meeting without a decision. Later, they agree that if he calls back again, they will give him a hearing.
There remains one bright ethical line that surgeons and nurses have not crossed. They will not play the role of recruiter. The spectre of doing harm to otherwise healthy donors still looms large.
As a result, the transplant community still doesn’t encourage living donation in any way — not even with public education campaigns like those used by blood banks. Nor do patients get advice for finding donors on their own.
“I almost feel guilty,” Jacobs said. “Am I doing the right thing by not opening my mouth?”
A better way?
Kidney patients and willing donors, who never witness those discussions, wonder why it has to be so difficult.
Three years ago, Lynn Grueneich, of Alexandria, Minn., heard about a Minnesota teenager who was dying of kidney disease. She resolved to give him her kidney. “My mission is to love boldly and spread joy,” she said.
But when she went to the university for a screening, they said her blood-type didn’t match his. Then she heard about Melissa Larson. She went to the university again, only to be told again that she was not a match.
She wondered why there isn’t a better way to match willing donors with desperate patients.
“If I gave my blood, there has to be someone I can help,” she said. “Why isn’t there a data base?”
As Melissa Larson only recently found out, now there is.
marcotty@startribune.com • 612-673-7394
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