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Defying the Gods: Inside the New Frontiers of Organ Transplants makes one almost keen for health reform, whose ignominious death the country witnessed during summer’s waning days. But don’t expect the author, Wall Street Journal reporter Scott McCartney, to join the lament. He’s the quizzical-looking guy standing alone in the corner, wondering whether health reform’s demise might just be for the best, after all.
Defying the Gods explores the science, ethics, and economics of organ transplantation by profiling the surgeons and four patients at Baylor University Medical Center in Dallas, one of the country’s oldest and largest liver-transplant programs. Readers who can get beyond McCartney’s muddled equivocation will find a disturbing exposé of health care delivery dictated by the dollar, even at the cost of lives.
Yet the author probably would be surprised to be cast as a medical muckraker. The first third of Defying the Gods is a starry-eyed tribute to the “top-gun flyers of medicine,” the “top dog[s] in the hospital cafeteria,” the “cream of the [medical] crop,” the “donor cowboys”—i.e., transplant surgeons, specifically Baylor’s liver transplant surgeons. Later chapters that critique transplantation policy are packed with damning information, but the author remains maddeningly tentative about the need for tighter government regulation of the profit-driven transplant field.
The number of liver-transplant centers has tripled since 1988, to a total of 114 in 1993. While that increase may seem a reasonable outgrowth of improved transplantation techniques, capacity now far surpasses the supply of livers for transplant. The reason for the proliferation of programs is simple: Transplantation is a money magnet for hospitals.
Hospitals turned to transplants in the late ’80s to fill beds emptied by the surge in outpatient surgery and shortened hospital stays; they offered “million-dollar signing bonuses to lure coveted transplant surgeons,” McCartney writes. As one St. Louis surgeon told the author, “Every hospital wanted to be a trauma center before they found out it was expensive, and now they are trying to get out of it. A lot of hospitals see transplantation as helping to save their bottom line.”
Counting hospital, doctor, and organ bank charges, an average liver transplant costs about $180,000, half of which represents pure profit, according to some estimates. (Despite all the hand-wringing during the health care debate, hospital profits have risen each year since 1988.)
These financial incentives have drawn 100-plus U.S. hospitals into the liver business, but not all of the transplant centers are doing booming business: A third of them perform fewer than 10 transplants a year, and that’s bad news for patients. In delicate procedures like liver transplants, experienced doctors can mean the difference between life and death. Compare, for instance, the difference in body counts between established transplant centers and start-up programs. Oklahoma Memorial Hospital in Oklahoma City began transplanting livers in 1991, but five of its first 15 patients died in less than a year, for a survival rate of 66 percent. Meanwhile, 87 percent of Baylor’s patients lived for at least a year.
Heart transplants prove the adage “practice makes perfect” even more dramatically. McCartney cites government statistics that compare low- and high-volume heart programs, and which take into account severity of illness pre-transplant. He writes: “Ten heart transplant centers have one-year survival rates below fifty percent, while thirty-two centers have survival rates above ninety-five percent.”
Transplant-center track records were published by the government in 1992, but although the data is “supposed to be available to patients,” McCartney casually relates, it’s “little known and probably little used.” Neither transplant centers nor watchdog groups are publicizing transplantation failures, so patients remain in the dark.
Medicare policy reflects governmental skepticism for liver transplant centers that don’t perform many of the operations: The feds won’t cover liver transplants at institutions that do fewer than 12 a year, or log one-year survival rates below 77 percent. But private insurers don’t always follow the government’s lead. Only a third of the nation’s 114 liver centers clear the 12-a-year/77 percent Medicare hurdle, an official with the federal Health Care Financing Administration told me.
But liver transplant candidates have one good reason to choose a smaller center: faster access to an organ and hence a chance to live longer. The liver regulates chemicals in the blood and produces essential proteins, a complicated process that no machine can duplicate. While people with bad kidneys can put off a kidney transplant by using a dialysis machine, hundreds of people die each year waiting for a new liver.
In 1984, Congress mandated that the nation’s 69 organ banks share livers, with organs going to sicker patients first. But programs ignore the spirit, if not the letter, of the law. The private United Network for Organ Sharing (UNOS) is contracted by Congress to enforce equitable distribution of organs “according to established medical criteria.” But the organization’s policy is set by transplant surgeons, many of whom run the smaller centers. If these doctors were to distribute livers according to strict medical-need criteria, most organs would go to large programs—like Baylor’s—that have more and sicker patients.
The upshot is that most livers are doled out within the 69 organ bank territories. Accordingly, liver patients are faced with a Hobson’s choice: Go to Baylor, where the surgeons are skilled but the waits stretch on for months during which you might die, or sign up with a low-volume location where you’ll get lucky in two weeks but doctors might botch the procedure.
Considering the dire shortages, the government should shut down all but the several dozen most successful programs. McCartney suggests such an approach but doesn’t push the point. His reluctance to endorse one policy recommendation over another seems rooted in a fear that any reform might threaten the forward march of liver transplantation, or limit access to organs in ways he finds objectionable.
When McCartney turns from the transplant system to the inner workings of Baylor’s program, his critical faculties nearly evaporate. Seduced by the “top-gun cutters” he trailed for four months at Baylor (and who gave his sister-in-law a triple-organ transplant in 1989), he is alternately oblivious and unduly charitable about the program’s shortcomings. Evidence this description of an elderly patient named Mel Berg:
At sixty-seven, some might not want to endure an ordeal like a liver transplant, eight hours or so of grueling surgery, three months of difficult recovery…and a lifetime of drugs that bring with them a host of side effects. In essence, one disease is traded for another, and statistically, the elderly do not tolerate it all nearly as well as younger patients. Berg didn’t know it, but Baylor’s one-year survival rate for people over sixty-five was closer to fifty percent.
Why didn’t Berg know it? the reader gasps. Shouldn’t someone have told him his real chances? Maybe he would have preferred to live out his last days in peace rather than subject himself to the transplant “ordeal.” Furthermore, should he have had the option at all when livers are in short supply? McCartney mentions that several other countries refuse to transplant elderly patients, but ultimately frets about “arbitrary rules to limit access.”
The same question might be asked about the wisdom of performing transplants on patients rigged to life-support systems. While it obviously doesn’t make sense to transplant relatively healthy people whose chances would be better without a new liver, it seems equally ill-advised to transplant patients who are at death’s door. Individuals on life-support made up a full fifth of the almost 10,000 people who received liver transplants between 1987 and 1991, according to UNOS, yet their chances of surviving a year after transplant are 54 percent, significantly worse, even, than those of patients sick enough for an intensive care unit before transplant.
Many doctors argue that scientific progress would suffer if surgeons couldn’t experiment with the sickest patients, and that intervention to save lives should always be made, no matter how slim the chances of survival. But equally important considerations are sacrificed in the insular, surgeon-controlled transplant world: Society doesn’t get the biggest bang for its buck; scarce livers are transplanted at great cost into people who are as likely as not to die within a year. Plus, by eschewing age as a criterion for transplant, the system cheats intergenerational equity, the idea that organs should go to younger people who’ve not yet had the opportunity to live a “full life.”
Case-by-case decisions about who’s eligible for transplant are made by committees at each transplant center. At Baylor, medical criteria supposedly carry the day, but there’s plenty of fudging at the margins. For example, patients with conditions such as disseminated cancer aren’t supposed to get new livers, but McCartney describes patients who got a chance because they were “nice guys.” At the weekly “ “Selection committee meetings,’ issues become contrived and murky,” the author reports. “ “This guy deserves a liver,’ someone declares. “I don’t like him,’ or “I don’t trust him,’ says someone else.” Such decisions can never be bias-free, but the composition of Baylor’s selection committee hardly inspires confidence: 13 doctors, all men, all white.
McCartney’s portraits of the medical decision-makers confirm that Baylor’s program desperately needs a fresh perspective. The top “top-gun” is Goran Klintmalm, a Swedish émigré who started the university’s liver program in 1984. McCartney wants to impress readers with Klintmalm’s “surgical skill and scientific brilliance,” but for all the author’s adulation—and the surgeon’s evident talent—Klintmalm comes across as, well, a snob: “He sports designer glasses and a European wardrobe. He loves opera and books and is a testament to the lifestyle: fancy BMW 850, showpiece house in Dallas’s most exclusive neighborhood, polo with the tycoons of business on the weekend.” This lifestyle—and the lifestyles of the elite selection committee—would be irrelevant were it not for the possibility that the deck might be stacked against people who aren’t like them. Klintmalm tells the author that he fled Sweden for the challenge of setting up his own liver program. Plus, in his native land, a person could “work hard and get less after taxes than a janitor at night,” the doctor sniffs. “The dodos [are treated] just like anyone else.” One can’t help but imagine a sign over Baylor’s door: Dodos need not apply.
At a minimum, Klintmalm and two other surgeons split some $1 million in annual profits. The doctors’ incomes are embarrassingly high, considering that dying patients are regularly refused transplants because they fail the “wallet biopsy.” About a quarter of the U.S. population couldn’t qualify for a $180,000 transplant, McCartney estimates, either because they’re uninsured or covered by an insurer that refuses to pay for liver transplants.
Worse yet is McCartney’s list of “social morals” that may prompt the selection committee to reject a patient for transplant: “What about the woman who, with no other way to pay for the transplant, “divorced’ her husband, quit her minimum-wage job, and impoverished herself to qualify for Medicaid?” he asks. What about her? Should she be penalized for doing whatever it takes to save herself in what McCartney fondly calls the “good old American system [where] the dollar speaks”? You’d think Klintmalm might want to reward her never-say-die ingenuity.
Baylor’s selection committee begs comparison with similar groups that met in the ’60s to ration kidney dialysis, before the lifesaving machines became widely available. An investigation by journalist Shana Alexander of one such group, based in Seattle, “painted a disturbing picture of the bourgeoisie sparing the bourgeoisie,” one commentator wrote at the time. “This rules out creative nonconformists….The Pacific Northwest is no place for Henry David Thoreau with bad kidneys.”
Fast-forward to Baylor, 1993, where a corporate vice president gets an early slot on the waiting list because his bank has been seized by the government and he may lose his job and his insurance. Meanwhile, an alcoholic about whom the group concludes there’s “just something raunchy” is an object of ridicule. To be considered at all, alcoholics must prove six months’ sobriety, which this man ostensibly had done, though he needed a heart evaluation because he’d been kicked in the chest by a mule. “That brought chuckles,” McCartney writes. “Seems his wife found him so despicable that she had kicked him out of the house, and…he had been banished to living in the barn.
“ “The mule apparently didn’t like him much better,’ someone remarked to uproarious laughter.”
It’s not fair to judge doctors by jokes born in the pressure-cooker of life-and-death medicine. (McCartney doesn’t seem to realize that medical hi-jinks don’t translate well to the page, as he includes a half-dozen such painfully stupid episodes.) Still, the scene reeks with a class bias that makes one doubt that the “raunchy” farmer ever managed to land a spot on the transplant waiting list.
Beyond stories of heroism, transplantation has largely escaped close public scrutiny. Defying the Gods is a revealing beginning, but one of the facts McCartney neglects to mention, one not much discussed anywhere, is telling. We know how many patients die within a year after transplant, but how many ultimately reject the organs they were so desperate to receive? A third of all liver transplants fail within a year, according to UNOS. Some patients who reject their first replacement liver receive a second or even a third organ, though UNOS figures show their chances of living out the year are about one in two, odds lower than those of life-support patients.
Others die after rejecting a first transplant, perhaps asking themselves whether their last grab at life was worth weeks and months in the hospital, painful surgery, and hundreds of thousands of dollars in medical bills. This is not to say that many people wouldn’t choose to take the risk; they surely would. But at the very least people like Mel Berg should know the truth about their chances, and the rest of us should have some role in deciding whether society can afford to give a precious organ to everyone who wants one—no matter how old or how sick—or to every hospital that wants to hang a transplant shingle outside its door.