Excessive Force, or None at All, Battling Diseases

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In an ideal world, the need to make a major medical decision would sharpen the mind. We would analyze our options carefully, consider the pros and cons of different treatments and choose the one that best meets our specific needs. It seldom works that way, of course. Emotions come into play; so do cultural myths. The experience of a friend may carry more weight than a stack of statistics.

This phenomenon, which has implications for public health policies as well as individual patients, is explored in two new academic studies. In one, researchers from Georgia Institute of Technology investigate why some breast cancer patients who could safely opt for limited surgery instead insist on a more radical procedure. In the other, researchers from the University of Michigan found Americans suffering chronic kidney failure are more likely to go off their drug regimen than their counterparts overseas.

In both cases, patients are ignoring their doctors’ recommendations, opting for longer, more difficult and more expensive treatment (the breast cancer patients) or resisting even minimal self-care (the kidney disease patients). It’s likely that both paths lead to unnecessary pain, even as they add to our ever-increasing health care costs.

Nancy Wong believes “the pink-ribbon culture” is part of the problem. An assistant professor of marketing at Georgia Tech, Wong contends the media’s focus on breast cancer — which crowds out news about lung cancer and heart disease, both of which kill more women than breast cancer — has been a catalyst for overly aggressive treatment. She and her co-author, doctoral student Tracey King, note that the United States has the highest rate of mastectomy surgery among 21 industrialized countries.

They cite a 2006 study showing that 82 percent of women whose breast cancer was diagnosed at an early stage were advised by their physician to undergo a lumpectomy (surgery where the cancerous tissues are removed but the rest of the breast is preserved), followed by radiation therapy. However, only 74 percent followed that recommendation, with the rest opting for a mastectomy followed by reconstructive surgery — a “slow and painful process” that can take up to a year, King said.

In interviews, women who made that choice often expressed the belief that removal of the diseased breast made it less likely the cancer would recur — although, in fact, long-term survival rates for women who undergo the two procedures are exactly the same.

“They were augmenting that scientific information they received from their physicians with a lay understanding of risk they heard from other survivors’ stories — some they heard from word-of-mouth and some they read,” King said.

“Those impressions were even more critical in their decision making than what their physicians were telling them,” Wong added.

The cut-it-off mindset is not strictly anecdote driven. Breast cancer literature given out by clinics and physicians typically features “a lot of war metaphors,” King said. Symbolically, “mastectomy signifies a total victory over breast cancer, whereas lumpectomy seems to represent something more akin to a truce, which the untrustworthy enemy may not honor,” they write.

Then there are the publicized accounts of high-profile patients. “Before Nancy Reagan chose to have a mastectomy, increasing numbers of women were choosing lumpectomies,” King said. “After her decision was made so public, the rates changed. The rate of mastectomies increased, and the rate of lumpectomies declined.”

Wong and King fear this problematic dynamic — early detection leading to an insistence on aggressive treatment — will expand to other areas of medicine in the years to come, as genetic testing alerts people to potential problems ahead.

As Wong and King were interviewing breast cancer patients, Richard Hirth at the University of Michigan School of Public Health was looking at a study tracking the behavior of dialysis patients in 12 countries. One item in particular struck him: When asked whether these patients, all of whom had advanced kidney disease, had ever stopped taking their medication because the cost was too burdensome, the variations from nation to nation were huge — from 3 percent in Japan to 29 percent in the U.S.

His first thought was this must reflect the fact that the out-of-pocket cost of these drugs is higher in the U.S. than in the other countries surveyed. But when he crunched the numbers, he concluded that only partially explains the results. Even figuring in higher costs, Americans should be at about 17 percent noncompliance, not 29 percent.

Hirth is not at all sure why. He noted that, in general, countries that made the drugs available to the very poor at no cost at all had lower noncompliance rates. It follows that exempting the lowest-income Americans from the need to make even minimal co-payments could help close the gap.

“The purpose of cost-sharing in insurance is to control what economists call moral hazard,” he noted. “We don’t want extra drugs being consumed because there’s no co-pay. We don’t have cost-sharing of drugs to keep insulin away from diabetics.”

But Hirth added that, compared to patients in other countries, Americans are also more likely to skip or shorten sessions on dialysis machines. “It’s a well-known problem in the U.S. dialysis population” — and presumably not cost driven.

“That makes it harder to answer the question, ‘What’s the policy prescription?’” he said. “I don’t see us passing the Cultural Change Act of 2008. But there are things that might be modifiable, such as the interaction between patients and physicians — the counseling that is given.”
But he shouldn’t count on counseling as the answer if Wong and King’s breast cancer research is any indication. They see the need for an entirely new cultural narrative regarding disease, one that focuses more on the practical management of our aging bodies and less on the notion that medicine can restore us to perfect health.

That said, they are not judging the women they interviewed. “We’ve asked each other what we would do in the same situation,” King said. “We’re not saying we wouldn’t make the same decision. But we wanted to create awareness that this is going on.

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