But reality is always more complex than that. The
patient may be seeking a procedure that's so new no one knows if it will cure her. As the
young mother's advocates publicly press for the experimental treatment, others may clamor
for it, too, even though studies of its safety and effectiveness aren't complete. And this
may have the unfortunate side effect of short-circuiting the research process so it
actually takes longer to know whether the treatment really works.
Meanwhile, the HMO's executives are moving her case through their usual bureaucratic channels. The time taken for referrals and reviews steals precious weeks from her life. As they recite dry passages from a claims manual, the executives lose sight of the fact that they're dealing with a real human being.
But recent events have given both patients and health plans something to think about as they attempt to sort out how to use new medical treatments.
In January, a San Bernardino, Calif., jury handed a young widow an astounding $116 million in punitive damages against health-insurance giant Aetna in a clear rebuke against the way HMOs deal with experimental treatments and the dying. David Goodrich was a 44-year-old attorney who died in 1995 after a three-year battle with a rare stomach cancer and with his insurer. While Aetna officials deny their actions made him any sicker, 10 members of the jury strongly disagreed. What seemed to resonate with them most was a two-month delay Goodrich had to endure while Aetna's internal gears ground away, processing his request for out-of-network treatment by specialists in his disease. While Goodrich waited, the cancer moved to his liver, complicating his treatment profoundly.
Delay is a form of denial, notes Mark Cloutier, a bioethicist at the Bioethics Consultation Group in Berkeley, Calif. At the end of life you dont have to deny someone outright to avoid paying the bill.
Ironically, Aetna is known in the industry as progressive. In 1991 the firm was the first to use independent panels of experts to review denials of care to dying patients. And yet, in the Goodrich case, that process wasn't enough to satisfy either Teresa Goodrich or a jury of health-care consumers.
While Aetna contends that David Goodrich failed to properly use the internal grievance and case management tools offered by his health plan, the insurer has also changed its policies over the past several years. The company recently began a program that gives more individualized attention to patients with life-threatening illnesses to help them navigate an increasingly complex set of treatment options.
A few other health plans have experimented with transplant or experimental treatment coordinators, usually nurse case managers who can counsel patients considering last-chance therapies on their options. One pioneer of this method, Blue Cross Blue Shield of Oregon, uses a transplant coordinator to work with patients considering bone-marrow transplants, one of the most grueling and controversial treatments a person can endure. Sometimes patients decide not to choose the high-tech option after all.
Bioethics researcher James Sabin sees the one-on-one counseling available through a transplant coordinator as a key to helping HMOs take on a more human face and patients to make better informed decisions. "This kind of deliberative dialogue will have to happen hundreds of thousands and perhaps millions of times for doctors, patients, health plans and society to move along a learning curve toward a more patient-centered, cost-effective and ethical health-care system," he writes.
Part of that discussion isnt just which treatment is scientifically better. Each individual has to weigh the risks and benefits of a procedure given his or her age, family situation, and personal attitudes toward pain and the end of life. "Some people are willing to take the operation if there's a 1 in 1,000 chance of curing them, even if they die on the operating table," says Dr. Peter Goldschmidt, president of the Medical Care Ombudsman Program in Bethesda, Md. "Others would chose a different path. We need to provide individuals with the information about the risks and benefits of treatment. We don't do enough of that."
The Goodrich jury made clear that the public is tired of bureaucracy, no matter how well-meaning, that puts a dying person through a draining battle with his or her health plan at the worst possible time. Christopher Lyon, who works with insurance companies to assess new technologies and decide whether certain patients should have them, would like to see HMO insurers understand that point better.
"We're challenging HMO insurance companies, when a controversial procedure shows up, to gather up the medical evidence and study it themselves and present it to the doctor and to the patient so everyone is dealing from a common knowledge base," says Lyon, president of the National Center for Independent Medical Review in Plymouth Meeting, Mass.
At the same time, patients need to understand that every breakthrough in the laboratory that's blared in the media will not pan out, and that the scientific process that will test it over the next several years is essential to making good, balanced decisions. The other problem with pushing an experimental treatment before it's fully tested is that the clinical trials process is undermined. The best way to know whether a new technology works is to let it be tried in real people, whose outcomes are compared with other people who don't get the treatment.
"The worst part is that by promoting (a new treatment too quickly) without enough evidence, we'll never have the opportunity to know what really works," worries Naomi Aronson, who runs the Technology Evaluation Center.