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Day 2: Treat sickest first, or give livers to the less ill?

| Monday, March 10, 2008
Until last Monday, Dr. Amadeo Marcos was chief of UPMC's transplant institute. He said all patients on the waiting list deserve a chance at a new organ, no matter how sick they are. Andrew Russell | Tribune-Review
Until last Monday, Dr. Amadeo Marcos was chief of UPMC's transplant institute. He said all patients on the waiting list deserve a chance at a new organ, no matter how sick they are. Andrew Russell | Tribune-Review
Dr. Thomas E. Starzl (right) is monitored during a 2008 February interview by Randy Juhl, then vice chancellor for Research Conduct and Compliance for the University of Pittsburgh.
Tribune-Review file
Dr. Thomas E. Starzl (right) is monitored during a 2008 February interview by Randy Juhl, then vice chancellor for Research Conduct and Compliance for the University of Pittsburgh.
Peering at a smiling self-portrait of her daughter, Kathy Miller questions the death of Katy, 21, who participated in a special trial for liver transplant patients at the University of Pittsburgh Medical Center. S.C. Spangler | Tribune-Review
Tribune-Review
Peering at a smiling self-portrait of her daughter, Kathy Miller questions the death of Katy, 21, who participated in a special trial for liver transplant patients at the University of Pittsburgh Medical Center. S.C. Spangler | Tribune-Review

The father of transplantation felt bewildered.

The transplant center bearing Dr. Thomas E. Starzl's name at the University of Pittsburgh Medical Center now does the very surgeries that doctors there once shunned, even mocked.

Transplantation pioneers at UPMC in the early 1990s criticized colleagues at other hospitals for giving livers to patients who were not critically ill, people who had a better chance of living without surgery until they became sicker.

"It was a moral position," said Starzl, now 81. "It was an ethical position, and it was supported by the leadership here from top to bottom.

"Now it has changed ... It's a commercial drive. That's undeniable."

UPMC does more liver transplant surgeries into the least ill patients than almost any center in the country. It has done 102 of them since 2005, second only to Clarian Health in Indianapolis.

The shift in philosophy has been so pervasive that Starzl's bosses at UPMC didn't even want him talking about it. They sent Pitt vice chancellor Randy Juhl to listen in as he talked to the Trib.

"It's humiliating," Starzl said.

Dr. Amadeo Marcos, until last week director of UPMC's transplant institute, later defended the medical center's surgical practices. All patients on the waiting list deserve a crack at a new organ, he said, regardless of how sick they are. UPMC performs surgeries on some of the nation's most critically ill patients.

"We offer transplantation to everybody," Marcos said. "We look at every patient, really try to help them as much as we can."

Fourteen years ago, UPMC's doctors called the transplant surgeries on the least ill "boutique" cases, as breezily fashionable as a trendy clothing store.

They wrote in the Journal of the American Medical Association that people at the bottom of the liver waiting lists -- patients "called in for operation from the 19th hole of the golf course" -- have a "higher survival without transplant intervention."

Recent research from the Scientific Registry of Transplant Recipients at the University of Michigan echoes their warnings, showing nearly identical findings. The registry, under contract to the federal government, tracks and analyzes all organ transplantation data.

A changing of guard

When Venezuela-born Marcos arrived in Pittsburgh in 2002, transplant program leaders at UPMC were pushed to boost volume.

The year before had marked a low for UPMC: Only 132 liver transplants were performed. At its peak, in 1990, the center had done 471 cases.

Marcos's predecessor, Dr. John Fung, left UPMC under pressure from top administrators, including CEO Jeffrey Romoff, to do more transplant surgeries.

"There was always that level of emphasis on volume there that, whether consciously or subconsciously, drove how people practiced," said Fung, the transplant center's chief from 1991 to 2004 and now director of surgery at The Cleveland Clinic.

The pressures remain today, Starzl said, who recently announced his retirement. Starzl stopped doing surgeries in 1991 and has been involved in UPMC research involving weaning transplant patients from anti-rejection drugs.

"You set up a program, you depend upon it for a cash flow of an institution and you try to maintain that," he said. "There are certain expectations.... In the change from a crusade to a business, it's just that simple."

UPMC is now a massive medical network with more than $600 million in annual profits.

Marcos, who remains on the faculty of the University of Pittsburgh until June 30, said UPMC's administrators did not pressure him to do more transplants.

Romoff declined to comment. Bill Morris, executive director of UPMC Transplant Services, said in an e-mail that medical center officials would "not discuss financial issues related to transplantation."

The university's Juhl said during the meeting with Starzl that all transplant surgeons have financial pressures and decisions to make.

"It could be worse here because of the lofty height and tradition, and so on," Juhl said.

With Starzl as its guiding star, the place once known as the transplant capital of the world attracted sick patients from as far away as Jordan and Syria.

Today, 127 U.S. programs perform liver transplants, compared to four in 1981, when Starzl arrived in Pittsburgh from the University of Colorado.

"Historically, UPMC is the Ford or Mercedes-Benz auto manufacturer of liver transplants," said Dr. Jeffrey Punch, transplant director at the University of Michigan Medical Center. "But now we know there are a few car companies that can make a car at least as good as that company."

Many doctors who trained at UPMC moved on to create programs that now indirectly compete with Pittsburgh, said Dr. Claude Earl Fox, the chief of the U.S. Health Resources and Services Administration from 1997 to 2001.

"You had one factory with a fair amount of raw material," said Fox, director of the Florida Public Health Institute. "Now you've got a lot of factories but you haven't got a lot more raw material, so they're all competing for the raw material, and in this case, the raw material is organs."

In 2006, organ procurement agencies recovered 7,305 livers across the United States. Of those, surgeons transplanted 6,597 and rejected 708.

As those programs made transplantation routine, UPMC sought alternatives to remain at the top. It started using more livers once considered unusable. It began doing surgeries with organs from live donors and stepped up its transplants on patients at the bottom of the waiting list, those not considered critically ill. UPMC also opened a $58 million transplant center in Sicily.

"Now I do want to have the biggest, the busiest and the best transplant program in the world, and that's what we have today," Marcos said in January. "And I want to keep it that way. I want this to be the Mecca as it's always been, the ultimate place for anybody with liver disease to come. And again, we are going to do everything we can to help them."

UPMC transplants livers into less critically ill patients to make the best use of all available livers -- not to keep a high number of surgeries, Marcos said.

"This is not to keep volume," Marcos said.

"All centers have moved into the reality of 2008 compared to the reality of the early 1990s," he added. "We don't have the luxury of having every organ we want to transplant those patients."

Transplant novelties

An aggressive workhorse with soap opera star looks and the deep voice of a broadcaster, Marcos brought to Pittsburgh a pair of transplant novelties poised to alter the field.

He began doing transplants using live donors, in which a portion of a healthy donor's liver is cut off and given to an ailing recipient. The surgeries had been his specialty at Strong Memorial Hospital, in Rochester, N.Y., where he worked two years before coming to Pittsburgh in 2002.

Prior to that, UPMC had performed only 18 of those transplants.

In the first year after Marcos arrived, UPMC's annual number of living-donor liver transplants jumped to 25. Last year, there were 36, the most ever.

Marcos also was willing to use livers rejected by other surgeons.

"I did notice that perhaps before I got here they were not willing to truly consider every organ out there," Marcos said.

So-called extended criteria donor livers are generally flagged because they come from deceased donors who don't meet generally accepted quality standards. That can be because of anything from being too old, to too fatty, or too much time inside a cooler as it was transported to the transplant center.

Surgeons say using those livers helps them expand the pool of organs when 17,000 are on a waiting list nationwide and only 6,000 each year get them.

"If there was a surplus of organs available in this country, I really doubt anyone would be using extended-criteria organs," said Dr. Adel Bozorgzadeh, director of solid organ transplantation at Strong Memorial Hospital. "What are you supposed to do? Let the patients die?"

At Strong Memorial, the livers had caused trouble, partly during Marcos' tenure as head of solid organ transplantation.

From 2000 to 2004, the New York Department of Health found 10 violations related to the use of extended-criteria donor livers. Marcos left Strong in 2002.

One patient received a liver so bad, the complications forced a second transplant. Others got risky livers without even knowing about it. State regulators slapped the hospital with a $20,000 fine.

Bozorgzadeh said surgeons at Strong continue to use the livers, with one major difference: Patients now get detailed explanations about the possible background of the livers, and must read and sign lengthy consent forms.

Marcos said extended criteria donor organs are tested thoroughly at UPMC.

All livers undergo a biopsy that can tell doctors, among other things, whether a liver is too fatty, one of the top reasons for rejecting it.

"You can be 20 years old but have a lousy liver biopsy," Marcos said. "We're not using that organ, no matter how young the donor is."

The scientific registry suggests that marginal livers should be transplanted into the sickest patients -- those about to die without a new organ, even if it's not a perfect one.

Marcos disagreed. "Nobody in his right mind would do a transplant not expecting for it to succeed," he said. "You're not going to take an organ for somebody that's desperate when you know it's going to fail. That doesn't happen."

Before coming to Pittsburgh, Marcos hesitated about taking the job at UPMC because the transplant center had a reputation for not doing many live-donor transplants. It was Starzl, however, who ultimately convinced Marcos to make the move, Marcos said.

The relationship quickly became strained. Starzl said there was never a rift, but merely distance. A "grand canyon," he said.

The thin string that held them together broke with the death of 21-year-old Katy Miller.

Katy's story

The college sophomore had been diagnosed in 2005 with a rare illness called primary sclerosing cholangitis that doctors predicted would destroy her liver. She would eventually need a liver transplant.

But she wasn't sick enough to get a liver from a deceased donor, the most common source of organs for transplantation.

Doctors at UPMC made her an enticing proposition: If she enrolled in a study aimed at weaning patients off anti-rejection drugs, they would do the transplant. The catch: She'd have to find a living donor.

"Our thought was, we'll do this to keep her from getting more sick," said her mother, Kathy Miller of Creekside, Indiana County. "That is why we did it back then. I mean, eventually, she was going to need a transplant. So why not do it when she was healthy?"

Starzl wasn't part of the team that recruited Katy, but agreed with the decision of allowing her to take the chance at having a normal life.

On Nov. 1, 2005, Katy received part of the liver of her eldest sister, Shelly McGinnis.

It wasn't meant to be. Katy died on May 7, 2007, following countless medical setbacks, including a second transplant that wound up infecting her body, shutting down her kidneys and causing internal bleeding.

A picture of Katy on her final birthday shows her skin was jaundiced and that she wore a large shirt to conceal a drain on her belly.

"Now I wish that I had let her run her course," her mother said. "Maybe her own liver wouldn't have deteriorated as fast as it did."

Marcos wouldn't talk about the case, citing privacy laws. As Marcos resigned, UPMC disclosed it had begun a study involving complications in surgeries such as Katy Miller's. Administrators have recruited international experts to conduct the review and have expressed confidence in the program's quality.

Katy's death troubled Starzl, who had collaborated in her care. Although he and Marcos agreed on giving her the transplanted liver, Katy's mother said the doctors disagreed over how to proceed when it failed.

"I've never faced a death that caused so much sorrow," Starzl said.

At 81, Starzl said retirement seems logical. Saying he has "battle fatigue," he will no longer do research and, instead, focus his time on his wife, Joy, their dogs and his love of Mozart.

"These are devastating hits," Starzl said. "In the course of a long and tough life doing difficult cases and being always right at the edge of tertiary care problems, you build up layers of grief, but you can take those if they are thin. When you have a deep rip in the fabric, that's a different matter. And Katy was like that."

Luis Fábregas can be reached at lfabregas@tribweb.com or 412-320-7998. Andrew Conte can be reached at andrewconte@tribweb.com or 412-320-7835.

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