Day 1: How liver surgeries cut short patients' lives
Hundreds of patients each year undergo liver transplants when they don't need them, and possibly never will, a four-month Pittsburgh Tribune-Review investigation found.
One in 10 of those patients dies when they could have lived longer without the transplant. The rest - all at the rock-bottom of waiting lists - must resign themselves to an early battle with the burdensome risks of anti-rejection drugs and complications that can follow: infections, cancers, kidney damage, and high blood sugar.
What's worse, a third of those patients get the worst available livers, organs sometimes rejected by surgeons for thousands of sicker patients across the country.
The University of Pittsburgh Medical Center and three other centers head the list of hospitals doing such surgeries.
The founding fathers of organ transplantation - including pioneer Dr. Thomas E. Starzl at UPMC - warned more than a decade ago against transplanting livers into the least sick.
Starzl and many others haven't changed their minds.
"It is undoubtedly true that there are transplants being done that shouldn't be done," said Starzl, 81, and just now moving toward retirement at UPMC.
The Trib investigation found:
• Despite a federal rule designed to limit the number of liver transplants in patients who aren't critically ill, four of the nation's 128 programs have done half of the 846 such transplants since 2005. The programs, by volume of transplants, are Clarian Health in Indianapolis, Pittsburgh's UPMC, Mayo Clinic in Jacksonville and Strong Memorial Hospital in Rochester, N.Y. Most other centers do not give livers to less-critically ill patients, except in rare cases.
• Transplants among least ill patients mean big money for medical centers facing increased competition. By doing transplants no one else will do, centers tap into a pool of some 8,500 patients worth an estimated $4 billion in potential charges. They typically get paid the same, no matter how sick the patients are.
• No federal rules exist on the use of marginal or inferior livers for transplantation. Individual surgeons decide whether an organ is suitable. However, when an organ comes from a high-risk donor, physicians are required by federal regulation to make that clear to the patient.
• Liver transplant programs sometimes bypass the sickest patients because their reduced survival odds can hurt overall center success rates.
• Of the 16,000 people on the national liver transplant waiting list, only about 3,400 are so sick that having a transplant would increase their odds of surviving.
• People at the bottom of waiting lists rarely get sicker quickly. Only five percent of the 5,800 people in the lowest segment of the list get so sick within a year that they absolutely need a transplant.
The Trib's investigation comes amid questions about UPMC's highly regarded liver transplant program. UPMC's chief of transplantation, Dr. Amadeo Marcos, abruptly resigned last Monday.
Robert J. Cindrich, UPMC's legal counsel, said UPMC has initiated an independent study of complication rates for its live-donor liver transplant program. Those procedures use segments from live donors rather than whole livers from deceased donors.
He said Marcos' resignation is not related to clinical issues or questions raised by the newspaper.
Before his resignation, Marcos said UPMC's intent is to help patients.
"That's the only driving force here, to do the best for your patient and get good results," Marcos said. "That's it. There's no ulterior motive in it."
But it doesn't always work that way.
Terry Masker knew the end had arrived.
His family gathered around his hospital bed to celebrate his 60th birthday June 3. His babies, as he liked to call his grandchildren, brought a sheet cake and balloons.
Masker turned to his wife of 40 years.
"Why did we let them kill me?" he said.
Before a liver transplant eight months earlier, the former salesman often attended his grandson's baseball games, cooked meatloaf for his family and cleaned his house in Elmira, N.Y.
"You would have never known he was sick," said his eldest son, Mickey, 40.
Masker died on June 20, following two liver transplants at Strong Memorial Hospital in Rochester, N.Y.
Retired from his job at Frito-Lay, Masker had diabetes and a bad back but few outward signs of liver disease.
His illness, a condition known as cirrhosis, had appeared without warning in 2001. Back then, Masker almost bled to death when veins in his esophagus ballooned and ruptured, a common complication of liver disease. Another such episode occurred in 2005.
The condition was treated with medicine and minor surgery by a gastroenterologist in Elmira, N.Y., Dr. Jagadeesh Hathwar, who told Masker in May 2006 he probably would not need a new liver for four or five years.
Yet four months later, surgeons at Strong Memorial placed him on the transplant waiting list.
"I was in shock," said his wife, Carol.
Hathwar, too, was surprised Masker was in line for a transplant so quickly because his bleeding was not a "straightforward indication" of the need for an immediate transplant. He said he left the ultimate decision to the specialists at Strong.
Masker's relatively good health was reflected in the numeric score universally used to rate the degree of liver disease.
The scores, known as MELD for Model End-stage Liver Disease, range from 6 for the least sick to 40 for the very ill. The score is based on three blood tests that predict a patient's need for a new liver within the next three months. Patients who have an illness, such as cancer, or severe quality-of-life issues can apply for additional points to increase their score.
In rare cases, such as advanced cancer, patients still need a transplant even if they cannot get the exception points.
Masker's score of 11 showed his own liver was functioning relatively well.
He didn't know it at the time but people with scores of 14 or lower face more danger from a transplant than from liver disease, according to a 2005 study by surgeons at the Scientific Registry of Transplant Recipients at the University of Michigan, the nation's leading organ research agency based in Ann Arbor.
Those less-ill patients are three times more likely to die within a year if they have a transplant than if they wait, research from the agency shows.
"There are some transplants being done out there that probably ought not to be done," said Dr. Robert Merion, clinical transplant director of the scientific registry and the study's lead author.
Some patients' illnesses never progresses to the point that a transpant is necessary, Marion said.
Masker's surgeon, Dr. Adel Bozorgzadeh, said Masker's bleeding episodes were reason enough - without even asking for MELD exception points -- to warrant a transplant. He said he doesn't regret the decision and would do it again if it came to that.
"This operation is not 100 percent guaranteed," said Bozorgzadeh, chief of solid organ transplantation at Strong Memorial. "There is risk associated with this operation. The important thing is for the recipient to understand what the risks are and to be educated enough to accept or deny the offer."
The hospital provided the Trib with copies of consent forms signed by Masker and stating he knew and understood the risks.
The United Network for Organ Sharing, or UNOS, the national organ allocation clearinghouse, changed liver allocation policy in 2005 so that more patients with higher scores have first access to livers.
That means that low-score people like Masker get livers that have been passed over by surgeons for other patients.
Masker received one.
Barely 10 days after Masker was placed on the waiting list, the phone rang as he and his wife sat in their favorite chairs and finished a late dinner of salad and bread while watching "Law & Order."
It was 8:30 p.m. The caller said they'd found a liver for Masker -- from a 76-year-old South Carolina man who died in a car accident. Because of federal allocation rules, the liver had been offered to and passed over by surgeons at every center in five southeastern states as well as by doctors for every sicker patient in the country.
They began a 2-hour drive to the hospital.
Across the country in Seattle, Linda Mate received a similar call offering a new liver.
A registered nurse diagnosed with Hepatitis C in 1996, Mate had worried about a transplant even with a MELD score of 16, which gave her a better chance of getting a good liver.
"Why wouldn't you want to hang on to your own body part and not go through that kind of thing?" said Mate, 56. "They virtually open you up one side and down the other and filet you like a fish and take your organ out and put someone else's organ in your body. ... It's very scary."
So scary that Mate turned down the liver, which had come from a patient who had been a known drug user. Mate had concerns about the quality of the liver, and she still felt pretty well. She constantly felt tired but worked hard to stay healthy by resting and watching her diet.
That was in November. Last month, Mate's blood work revealed a rare accomplishment. Her MELD score had dropped to 13. Her doctors at the University of Washington Medical Center took her off the transplant waiting list.
"I'm not at death's door," said Mate, who likes to paint and sings for a rock band. "I don't feel that wonderful but am I ready to trade one big problem for another big problem? I don't want a transplant right now."
Even though she knows some patients are miserable despite having a low-MELD score, Mate can't make much sense of transplant centers that operate on the less ill.
"Why take a chance of killing someone or having a complication on the table with someone who isn't in need yet?" she said.
The answer lies in how routine organ transplantation has become, doctors said.
The surgeries are so common that patients often think of them as being akin to replacing a cracked windshield, said Dr. Jeffrey Punch, transplant director at the University of Michigan Medical Center and a member of the UNOS regional council.
It's pretty much impossible to show that patients with low-MELD scores benefit from transplants, he said.
"Transplantation is a gruesome business" because patients have an 83 percent chance of living after one year, Punch said. "To have 1 of 6 transplant patients die, that's the same as letting everyone play Russian roulette."
Other surgeons expressed similar views.
"Even in the best surgical hands, there's a risk of surgery or immuno-suppression mortality that is fixed," said Dr. Richard Freeman Jr., a transplant surgeon at the Tufts-New England Medical Center in Boston. He co-authored the paper on low-MELD transplants with Merion. "You can't avoid that. If your risk of dying of liver disease is very low, it doesn't make sense to do a liver transplant."
Mate's experience shows that not everyone has to go immediately to the extreme of having a transplant.
Starzl sees it that way, too.
"If you go right to the ultimate solution of liver failure, you're going to the extreme end of replacing the engine when maybe all you have to do is do a spark plug, and the spark plug could be a whole variety of small procedures," he said.
Riding through a late October rainstorm, Terry Masker was pumped with adrenaline, still unsure whether to take the liver.
His son Mickey pulled over at their church, where the never-baptized Masker received the sacrament and spoke about feeling at peace.
"I know I'm going to be OK," he told his family.
When they arrived at Strong Memorial, the Maskers heard the magic words: "I would give this liver to my mother," Bozorgzadeh told the family.
The surgeon said he told the family that despite the donor's age of 76 the liver was in good condition.
Doctors reject livers for all sorts of reasons -- not only blood type or tissue type but also donor size and age, or simply because either the doctor or patient is on vacation.
To expand the liver pool, transplant centers routinely use organs that would have been rejected years ago.
Surgeons say skills acquired through the years give them the expertise to use those organs.
"It's kind of an ego thing," said Michigan's Punch. " 'I can use the worst possible liver.' They don't believe they are doing these patients a disservice."
Doctors who routinely use these livers say they are making the best use of all organs at a time when more than 16,000 people are waiting for livers nationwide. Only 6,274 underwent transplants in 2007, according to the scientific registry.
"The better organs are going to the high-MELD (sicker) patients, and on average, the worst-quality organs are going to the low-MELD patients," Merion said. "And if anything, that actually drives the detriment that's associated with receiving a transplant if you have a low-MELD score."
Marcos, the former chief at UPMC, said he does not favor giving inferior livers to the sickest patients. That would benefit the individual patient - but it would hurt the center's overall survival rate, he said.
"If I'm going to die within a month if I don't get a transplant, and if I get a transplant I have a 40 percent chance of living after a year, that makes sense to you," Marcos said. "But does that make sense, as a whole, for the program?"
About 84 percent of UPMC patients were still alive one year after the transplant, UNOS data show. The numbers would be worse if UPMC only put available livers into the sickest patients.
"If I were to get a 40 percent survival, I would not be in transplantation," Marcos said. "There will be buses of dead people."
At St. Luke's Hospital/Mayo Clinic Jacksonville, more than half the transplants last year used marginal organs, said Dr. Christopher Hughes, chair of transplant surgery.
St. Luke's has started using more of those organs since facing increased competition from new and more aggressive centers in the Southeast. Hughes said the organs work just as well, and allow centers to clear waiting lists faster.
"You always want your program to have a high volume and be successful," Hughes said. "The fact we're able to maintain quality despite pushing the limits has allowed us to go further and further."
Dr. A. Joseph Tector, chief of transplantation at Clarian, provided a draft of unpublished research showing that outcomes at his center are the same no matter whether the liver came from the local region or across the country, meaning they had been rejected by other surgeons.
The Indianapolis hospital considers all livers unless the donor is older than 60 or the donated organ has been outside the body longer than 12 hours. Doctors can't guarantee there will be a liver when the patient becomes sicker, Tector said.
"I can't promise anybody that they'll get that liver transplant," Tector said. "The question is, are you going to be better off getting it now or waiting until you're much sicker?"
The U.S. Health Resources and Services Administration published a report in September that looked at best practices, which included Clarian and St. Luke's for reducing surgical times and improving quality.
Terry Masker's wife and son said they don't remember being told he had the chance of getting a marginal liver. But Bozorgzadeh, the surgeon, said he and another surgeon, Dr. Mark Orloff, had a 45-minute meeting with him in which they spoke about allocation rules.
"You have the right to refuse it," Bozorgzadeh said. "It doesn't mean you will be taken off the list."
After Masker spent 10 hours in the operating room, doctors told his family he was bleeding uncontrollably. When his family finally got to see him, he was hooked to a machine to help him breathe and his head and body had ballooned.
The next day, doctors took him for emergency surgery.
"They sold us on this liver," his son, Mickey, said in the living room of his Pine City, N.Y., home. "I am furious."
The business of transplants
Centers that stop doing transplants on patients such as Masker, with a low-MELD score, give up a large percentage of potential business.
At its height in 2003, doctors at the University of Cincinnati did 38 low-MELD transplants. They did none through the first nine months of last year. They stopped because Dr. Steven Rudich, the head of liver transplantation, refuses to operate on patients who are better off waiting.
Transplant centers bill an average of $449,200 for every liver transplant - including costs of doctors, medicine and follow-up care, according to UNOS estimates. That would mean the center has given up about $17 million a year.
Conversely, low-MELD transplants make up a large part of the business at some centers across the country.
At Strong Memorial, one in five transplants is done in the least ill-patients. The numbers are similar at UPMC and even higher at Clarian in Indianapolis, where a third of the patients have MELD scores below 15.
Surgeons said they are not motivated by a desire to make money, for themselves or their programs.
"Organ transplantation always starts out with the best of intentions," said Clarian's Tector. "People don't go into organ transplantation, generally, with dastardly plans or, you know, horrible financial motives. There are easier ways to make a living."
When Masker's first liver transplant failed, he received a second organ, this time from a 27-year-old woman with cancer of the central nervous system. There was only a slight chance the cancer would be passed on to Masker.
The liver worked but two months after the transplant, tests found cancer in Masker's liver. His family chose not to tell him about it.
"My mom was worried he was going to give up," Mickey Masker said.
By the end of May, Masker's kidneys had shut down and he was on dialysis. He had sustained several infections and had lost a lot of weight. He was on a breathing machine.
"He didn't have any more fight in him," his son said.
He hung on long enough for the birthday celebration and Father's Day on June 17. His family brought him a New York Yankees book.
Three days later, his wife kissed him on the cheek, a moment before he died.
He was in a coma, but Carol Masker believes her husband kissed her back.