Posted on Sun, Jan. 13, 2008
Somebody has to say no.
The question of who should say it and how is, in the medical world, the stuff of epic ethical battles, the elephant in the room in any discussion of health reform.
That a for-profit health insurance company - Philadelphia-based Cigna Corp. - said no last month to a dying 17-year-old girl in California, then changed its mind after bad publicity, has made for a compelling, highly emotional story. Mark Geragos, the attorney for the girl's parents, and presidential candidate John Edwards have blamed Cigna for her death.
But health-care ethicists and economists say it is not that simple. Nataline Sarkisyan's case raises complex questions about how we ration resources - money and, in this case, transplantable livers - and how we make medical decisions in what one ethicist called "last-chance" situations. While doctors are the experts on medical care, ethicists said, insurance companies have a responsibility to steward subscribers' money.
"No health-care system could provide everybody with everything they want," said Mary Ann Bailey, a health economist and bioethicist at the Hastings Center.
The case also illustrates how the payment battleground has shifted, said Mark Pauly, a health economist at the Wharton School. In the past, most disputes between patients or medical providers and insurance companies were about contract language, he said. Now, they are more likely to be about whether there is science to support a treatment. "I think the trend," Pauly said, "has definitely been to move everything in health care, including health insurance, more toward an evidence base."
Evidence or not, ethicists said patients would not trust insurers unless they were up-front about how they made decisions, because everyone knows they save money when they say no. And the amount of money some of them save works against them in the quest for public sympathy. Cigna expects to make $1.2 billion this year. Its CEO's total compensation in 2006 was $21 million.
People tend to see this kind of dispute as "bean counters vs. human caring," said James Sabin, a Harvard University professor who is director of Harvard Pilgrim Health Care's ethics program. "You know, who's going to side with the bean counters?"
But doctors are fallible. Several ethicists pointed out that, in the '90s, many insurers gave in to pressure to cover bone-marrow transplants for women with breast cancer. The treatment ultimately proved unsuccessful.
Sarkisyan's liver failed after she received a bone-marrow transplant for leukemia. Her doctors at UCLA Medical Center argued that a liver transplant would give a 65 percent chance of surviving six months. Cigna initially said it would not pay for the transplant, sparking protests. After consulting with outside doctors, the company changed its mind, it said, out of "empathy," even though it still thought the treatment was "unproven and ineffective." Sarkisyan died the day Cigna relented.
Geragos has said the hospital turned down two livers for the girl while waiting for Cigna's approval. UCLA and Cigna have both said they could not discuss the case because of privacy protections.
Jeffrey Kang, Cigna's medical director, said outside experts determined that a liver transplant likely would not help Sarkisyan. Transplant doctors' guidelines oppose giving organs to patients with other medical problems that would likely severely limit their survival. "There is no insurance system . . . that would have covered this," Kang said.
Asked whether doctors or insurance company employees should make treatment decisions, Kang said Cigna did not decide whether she should have a transplant. "All we do is make a decision as to whether or not it is covered by the employer's medical plan," he said.
Cigna never argued that it refused to pay for the transplant because it was expensive, though its critics did. Cigna said paying for the transplant would have been the responsibility of Sarkisyan's father's employer, a self-insured company for which Cigna managed claims and coverage. Cigna ultimately volunteered to pay the bill itself.
There is no denying that liver transplants are big-ticket procedures. The charges for a liver transplant and a year of follow-up treatment totaled nearly $450,000 in 2005, according to Milliman USA. Insurers generally negotiate discounted rates.
Given the estimate of Sarkisyan's chances of survival and the long list of patients needing livers, Bailey said she was surprised Sarkisyan would be considered a good transplant candidate. She also said she thought Cigna's reversal of its decision confused subscribers.
"They should have made up their minds and stuck with it," she said. Deciding later to cover the transplant was a "very bizarre thing to do," she added, and it leaves subscribers feeling "there is no systematic way of doing things."
Asked to explain the reversal, Kang said: "We can't comment on the unusual circumstances here that caused us to make, in essence, a charitable contribution if UCLA would not proceed with this without a payment source."
Haavi Morreim, an ethicist at the University of Tennessee Health Sciences Center, said cases like Sarkisyan's were so rare that it was difficult to amass adequate evidence on which treatments would work. Because there are not many other subscribers in the same position, a decision to pay for a new treatment also will not set an expensive precedent.
Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania, said there was still no escaping emotion as a factor in U.S. medicine.
People here put tremendous effort, he said, into saving trapped miners, little girls in wells, hikers stranded on frigid mountains.
"Americans are interested in spending money on things that work," he said, "but we are also a society that does value rescue."
And, he said, people want to go the extra mile for children. "Seventeen-year-olds and younger have special moral status," he said. "They're seen as people who, I'll just say it bluntly, deserve more."
He said he thought insurers should factor the U.S. penchant for rescue into their budgets, or the rest of us should figure out another way to finance care for people in desperate straits.
In his blog, Sabin criticized Edwards for capitalizing on the Sarkisyans' tragedy and presenting the denial as a "moral crime." It is reasonable to argue whether the facts justified a denial, he said, but "health-care limits, well-set, are an ethical necessity, not a moral abomination."
He said he thought the scientific bar for covering "promising but unproven" treatments should be lower for dying patients who have no other treatment alternatives. But he also said he thought that patients' doctors, whose "bias is and should be full-court press," are not the best people to make payment decisions.
Instead, insurance companies need to develop fair systems that take into account the needs of the individual, the evidence supporting a treatment, and the needs of the broader population served by the insurer. He liked one company's approach: Only independent outside experts could deny care. For credibility, Sabin said, those experts must be named. "You want the experts to have their name on the line," he said.
Kang, who wouldn't name the outside experts Cigna used to review the Sarkisyan case, said he believed doctors preferred to shun the limelight. "Being able to do this anonymously," he said, "allows people to give as objective a decision as they're able to without fear of retribution."
Contact staff writer Stacey Burling at 215-854-4944 or sburling@phillynews.com.