Your Medical Mind NPR coverage of Your Medical Mind: How to Decide What Is Right for You by Jerome, M.d. Groopman and Pamela, M.d. Hartzband. News, author interviews, critics' picks and more.
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Your Medical Mind

How to Decide What Is Right for You

by Jerome Groopman and Pamela Hartzband

Hardcover, 308 pages, Penguin Group USA, List Price: $27.95 |


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How to Decide What Is Right for You
Jerome Groopman and Pamela Hartzband

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Book Summary

Two physicians outline how patients can navigate health care choices when making medical decisions.

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Note: Book excerpts are provided by the publisher and may contain language some find offensive.

Excerpt: Your Medical Mind: How To Decide What Is Right For You

Chapter 3: But Is It Best For Me?

Patrick Baptiste, a thirty-six-year-old personal trainer at a popular health club in Houston, Texas, typically bench-pressed 310 to 320 pounds. Standing just shy of six feet three inches, with broad shoulders and a neatly trimmed goatee, Patrick had a warm and relaxed manner that made him one of the favorite instructors among patrons of the gym. One day shortly before Thanksgiving, when he positioned himself squarely on the bench to show a new member how to press properly, the weight seemed unusually heavy. Over the ensuing months, his strength seemed to decline, until he strained to press 225 pounds. Patrick had been eating more than usual to boost his strength and was surprised when he got on the scale and saw that he had lost seven pounds. He looked at himself in the mirror and noticed that the prominent curves of his biceps seemed a little flatter. Even more perplexing were several episodes of rapid heartbeat and trembling in his hands. These episodes occurred not only after he worked out at the gym, but once when he was driving to visit his family on a day off and another time when he was stretched out on his couch watching football. Patrick often felt on edge and several times was impatient with clients at the gym. Finally, when he realized that it took effort even to walk up a flight of stairs, he went to see his primary care doctor.

Patrick's physician had cared for him for several years and noted that his pulse, normally in the low 60s typical for an athlete, was now 90. As the doctor examined him, he stopped at his neck. "You have a muscular neck," the doctor said, "so I'm not sure, but your thyroid gland seems a little enlarged. That might explain what's going on here." The physician performed blood tests and called Patrick the next day to say that his thyroid hormone levels were too high. "I'm going to send you to an endocrinologist who specializes in thyroid conditions," the doctor said. "In the meantime, this medication will help with some of your symptoms, and you should start to feel better." He prescribed a medication called a "beta-blocker" to alleviate the tremor and slow the rapid heartbeat. "Before you see the specialist, we'll get a scan of your thyroid. He'll review the results and decide on the best therapy."

The specialist's office was not far from Patrick's health club. After a short wait, he was ushered into an exam room. The doctor asked Patrick how he was feeling and then handed him a glass of water. He asked Patrick to sip and swallow several times as he stared intently at the front of Patrick's neck. He then stood behind Patrick, placed his fingers around both sides of his neck, and again asked him to swallow. Taking his stethoscope from his pocket, he listened over Patrick's neck. Finally, the doctor took out what looked like a metal ruler and measured the distance from the corner to the front of Patrick's eyes. He put down the instrument and went back to his desk.

"You have Graves' disease, a form of hyperthyroidism, an overactive thyroid gland." The doctor swiveled his computer screen so that Patrick could see it. "Here, take a look at this scan of your thyroid," the doctor said. The image looked like a huge stippled butterfly. "The best treatment for this condition is radioactive iodine. You swallow a radioactive pill, and it destroys the gland. Problem solved. You get it over with." The doctor paused. "After that you'll just need a daily thyroid pill. No big deal."

But, Patrick told us, for him it was a "big deal." He asked the endocrinologist what alternatives there might be to radioactive iodine. "There are other options, but they're not as good. This is clearly the best treatment."

But Patrick persisted. "What are the other options?"

"There are medications that prevent the thyroid gland from making too much hormone," the doctor said. "But these drugs sometimes have terrible side eff ects, damaging your liver or knocking down the white blood cell count so you could be open to life-threatening infections." The doctor paused for a few moments, seeming to let that information sink in. "Or you could have surgery to remove the gland. But that also has real risks, with anesthesia, bleeding, and the possibility of damaging the other glands in the neck, the parathyroid glands, or even injuring the nerves to your vocal cords. This is really the best option."

Patrick felt unsettled by the doctor's words. "I don't trust this idea of one-size-fits-all when it comes to medical problems," he told us. His skepticism was the paradoxical gift of a previous illness, diabetes, diagnosed in his teens. Patrick was the oldest of five children, all born after his family had emigrated from Haiti and settled near relatives in Houston. As a teenager, already at six feet two inches, he weighed 260 pounds, and was a defensive lineman on the high school varsity football team. His mother, father, and grandparents all had diabetes. At age nineteen, when Patrick developed periods of intense thirst and frequent urination, classic signs of diabetes, his mother used one of her own test strips and found sugar in his urine. For several years he had taken oral medication and, at times, insulin injections to control his blood sugar.

Initially, Patrick said, his adherence to his prescribed diabetes therapy might well be described as "pretty poor." Like many of his age, he often skipped his medication, so that his blood sugar swung widely. "My diet was terrible, chips and soda, because I wanted to be normal, like all the other kids," he said. His doctors and his mother warned Patrick about the kidney failure and blindness that can result from uncontrolled diabetes, but these warnings had no effect on him. "It was hard to really imagine that you might get those kinds of complications," he recalled. "They seemed far off , irrelevant. But when the doctors told me that I could become impotent, that got my attention." Diabetics are vulnerable to nerve damage because the small blood vessels that feed the nerves can become diseased; if the nerves in the penis suffer this complication of the disorder, impotence results. "Finally, I heard something that was really important to me. It motivated me to take my diabetes seriously, and I began to take care of myself and follow the doctor's advice."

Patrick lost weight, and on a carefully controlled diet and a regular regimen of exercise, his blood sugar returned to normal. Now he took only one pill a day to keep his diabetes in check and didn't need insulin. Patrick told us that when he first developed his symptoms of hyperthyroidism, he thought it might be due to his diabetes, that his sugar was out of control. But it wasn't.

Because his insurance coverage had changed a few times over the years, Patrick had seen several diabetes specialists, and he'd discovered that they didn't all agree on what was best for him, which oral medications to take, whether or not he should also be on insulin, and even how tightly he should regulate his blood sugar. "I know from my own work as a trainer that you need to individualize exercise regimens, because diff rent bodies advance at different speeds." Whenever Patrick worked with a client at the gym, he tried to define the person's goals, desired weight, and level of fitness, and then they worked together, regularly assessing whether they were on the right track or needed to rethink their approach. He couldn't imagine telling a client that there was one "best" path to fitness.

Although Patrick had no prior knowledge of Graves' disease or the options for treatment, he felt he was being told — too quickly and too definitively — that there was one "best" approach. As it happens, clinical research supports Patrick's thinking. A group of endocrinologists at the Karolinska University Hospital in Stockholm, Sweden, conducted a study to assess the benefits and risks of the three common treatments for Graves' disease. They randomly assigned 179 patients to take antithyroid medication, undergo surgery on their thyroid gland, or receive radioactive iodine; the follow-up time was at least four years. The study showed that all three treatments were equally effective in controlling the disorder. Importantly, 90 percent of the patients were satisfied with their treatment — no matter which treatment they'd had — and would recommend it to a friend.

What Patrick experienced with his endocrinologist reflects a common and understandable phenomenon: The doctor projects his or her own preferences onto the patient. This has been documented in studies of a wide variety of conditions ranging from asthma to autoimmune arthritis of the spine, from prostate cancer to esophageal disease. Here, the endocrinologist truly believed that radioiodine therapy was best. His reasons for preferring this treatment were that it was simple — one radioiodine pill — and definitive — "problem solved." But not every endocrinologist shares this view. An international survey of thyroid specialists showed that about two-thirds of American endocrinologists favored radioiodine for treatment of Graves' disease, but only 22 percent of European and 11 percent of Japanese specialists did. Outside the United States, endocrinologists favored antithyroid drugs. Endocrinologists around the world have access to the same data from clinical studies and are schooled in the risks and benefits of each treatment. Yet the default option, presented as what is "best" for the patient, is strikingly different in these three regions. Part of the reason for this difference is likely cultural. The Japanese experience with nuclear weapons at Hiroshima and Nagasaki undoubtedly colors their views on radiation exposure. The 2011 earthquake and tsunami that damaged the nuclear reactors in Japan will likely amplify this. Western Europe is also leery of radiation, and this attitude was later reinforced by the accident at the Chernobyl nuclear plant.

The search for the "best choice" takes us to an eighteenth-century Dutch mathematician named Daniel Bernoulli. At the time, Holland was a hub of world commerce, and its traders were making decisions about buying and selling everything from Asian spices to Caribbean sugarcane. Bernoulli was born in the city of Groningen in 1700. His father, a mathematician, encouraged him to study business to assure himself a good income. At first, Bernoulli refused. Later, he agreed to study both business and medicine, but only under the condition that his father instruct him privately in mathematics. He ultimately became a professor of medicine, metaphysics, and natural philosophy at the University of Basel in Switzerland. His seminal work in fluid mechanics helps explain how birds fl y and was crucial to the development of airplanes. In 1738, he turned his attention to probability theory and devised a formula that he believed would calculate the wisdom of any decision where the outcome was uncertain and the choice involved risk. He proposed that by multiplying the probability or chance of an outcome by the utility of that outcome, meaning how much we value it, we obtain a number, the "expected utility." The highest number, the greatest "expected utility," indicates the most rational choice.

[(probability of outcome) × (utility of outcome) = expected utility]

Bernoulli was thinking mostly about choices that involved goods and money, and his formula for "rational" decision making has been widely applied in economics. Over the last few decades, however, "expected utility" theory has moved beyond economics and into clinical medicine. Researchers have proposed that doctors should advise a patient like Patrick Baptiste of his best option by using Bernoulli's calculations. First, the physician would tell Patrick the probability of a clinical outcome and then ask him to place a numerical value or "utility" on his health state if that outcome occurred. Multiplying the chance that a particular outcome might occur by the numerical value Patrick placed on living with that outcome yields a number; the highest number indicates his most rational or "best" choice. This formula has great appeal, as it pinpoints two key components we all should consider when choosing among different options: what is likely to happen and how our life would be affected if it did happen. All of us want to live the longest life with the highest quality. In the case of Graves' disease, all three options — radioiodine, surgery, medication — can yield the desired positive outcome, control of hyperthyroidism. But there are differences in potential negative outcomes and side eff ects, as well as in quality of life in the future.

Let's first imagine that the endocrinologist advising Patrick used Bernoulli's equation. As all the treatments can be effective in controlling hyperthyroidism, the probability of this outcome is equivalent for all three therapies. What differs are the potential side effects. Patrick's physician views the side effects of antithyroid medication and surgery as much more serious than those of radioactive iodine. So he would assign these treatments a lower "utility" or value, and he would logically arrive at treatment with radioactive iodine as the best option. He framed his discussion with Patrick in these terms.

But Patrick would solve the same equation quite differently. He cringed when the endocrinologist said that it was "no big deal" to destroy his thyroid gland with radioactive iodine so that he would have to take a thyroid hormone pill every day for the rest of his life. "I don't like having to take medication every day for my diabetes. And I didn't want to commit myself to taking another pill every day — to have another chronic condition." He explained that "when I watched my diet, exercised, and controlled my weight, I was able to come off insulin injections. But if you destroy the thyroid gland, this is permanent — I have no opportunity to get off that thyroid pill."

Patrick views the need to take thyroid medication permanently in strongly negative terms. So for him, radioactive iodine and surgery have much less "utility" than antithyroid medication and would not be valued as "best" for him.

Of course, another patient might solve this equation differently. Anna Gonzales, a forty-two-year-old journalist with three teenage children and a hectic schedule, also developed Graves' disease. When her endocrinologist suggested treatment with radioactive iodine, she readily agreed. "I want this taken care of quickly," she explained. When we asked her if she was bothered by the idea of taking a pill every day, she replied, "Well, I already take a birth control pill. This is not a problem for me."

Lily Chan, a twenty-seven-year-old social worker, chose surgery for treatment of her Graves' disease. "I'm really afraid of radioactive iodine," she told us. "No one can guarantee 100 percent that I won't have some kind of side effect that is not known about now, maybe even cancer."

But Patrick had no fear of radiation and no particular bias against surgery. "I simply don't want to be forced to take another pill every day for the rest of my life," he told us.

In the field of decision analysis, the utility or value that a person assigns to a particular outcome is termed his "preference." Researchers have found that patients often construct their preferences on the spot when the doctor gives a diagnosis and recommends a treatment. Such patients are something of a "blank slate" upon which the doctor can "write" his or her own preference. In this setting, the patient is especially susceptible to how the physician frames the pros and cons of the treatment.

The endocrinologist who advised Patrick framed his remarks in a way that clearly reflected his own bias by emphasizing the side effects of treatments other than radioactive iodine. He presented radioactive iodine as the standard or "default" option. Research in behavioral psychology shows that most people will accept the default option; they assume that what is routinely recommended is "best." It takes effort for a non-expert to decline the default option and seek an alternative.

But that's exactly what Patrick did. Because of his prior experiences with diabetes, he'd developed certain views about health. He wasn't a "blank slate," and he didn't construct his preferences on the spot. For him, past was prologue.

We should then ask why Patrick's endocrinologist had such a strong bias for radioactive iodine and framed his advice as he did. Perhaps he'd had bad experiences with antithyroid medications, where a patient had suffered a sharp drop in white blood cell count and developed a serious infection; or perhaps one of his patients had suffered serious complications from thyroid surgery. If so, this would reflect an "availability" bias: a dramatic past case readily recalled that colored the doctor's thinking. But it simply may be that the endocrinologist was conforming to the cultural preference of his colleagues in the United States and that if he had been practicing in Europe or Japan, he would have conformed to the prevailing biases in those regions.

Patrick Baptiste had accepted and adapted to one chronic condition, diabetes. He felt that adding a second chronic condition, permanent hypothyroidism that required daily treatment, would deeply disturb his life. Such strongly held personal views are at times difficult for others to fathom. The endocrinologist who evaluated Patrick could not understand why adding one more pill could be a "big deal."

Indeed, as physicians, we often prescribe medication with the assumption that it is "no big deal." And we assume that the patient will feel the same. However, a study of common medical conditions — including osteoarthritis of the hip and knee, benign enlargement of the prostate gland, or a ruptured disk — found significant differences in how patients and physicians weighed the goals and consequences of available treatments, including the burden of taking daily medication.

Patients should be aware that doctors and other experts may frame information in a way that reflects their own preferences. As physicians, we've both found ourselves at times too quickly telling our patients which treatments we prefer rather than working with them to understand their own thinking. Of course, patients may want, and often ask, what their physicians think is best. But that should occur after information is presented in a neutral way.

This divide between doctors' and patients' preferences has been studied in depth in treatment of another problem, atrial fibrillation, the condition that affected Dave Simon. This abnormal cardiac rhythm is very common: About 1 percent of Americans in their fifties suffer from it, and 5 to 10 percent of those who are seventy or older do. Based on data from the Framingham Heart Study, it is estimated that over the course of a lifetime, atrial fibrillation or a related rhythm called atrial flutter will occur in about 25 percent of the population.

It can be the first sign of hyperthyroidism, especially in the elderly. Atrial fibrillation occurs when the upper part of the heart called the atrium contracts abnormally, so that the heart beats in a disorganized and irregular way. Blood can pool in the heart, and clots can form. These clots can then be pumped out to the body and result in a stroke. Patients with atrial fibrillation are often treated with "bloodthinning" medications called anticoagulants, like warfarin or aspirin, that help prevent clots from forming. But these treatments can cause profuse bleeding. Such hemorrhaging is most common in the gastrointestinal tract but can be particularly devastating when it occurs in the brain. So the patient with atrial fibrillation must choose whether to take medication that may prevent a stroke from a clot but can cause serious bleeding.

Researchers at Dalhousie University in Nova Scotia interviewed sixty physicians who were treating patients with atrial fibrillation. They also interviewed a similar number of patients who did not have atrial fibrillation but were at high risk for developing this condition. Each doctor and each patient was asked to consider treatment options for a theoretical group of one hundred patients who had atrial fibrillation: Options included no therapy, aspirin, or warfarin. Both the doctors and the patients were presented the same numerical information about the chances of stroke and bleeding for each option and then were asked if the treatment was justified. The patients placed significantly more value or "utility" on avoiding stroke, while the physicians placed more value on avoiding bleeding. Although there was no information about why the doctors valued the risks and benefits of the treatment differently from the patients, the researchers concluded, "The views of the individual patient should be considered when decisions are being made about treatment for people with atrial fibrillation."

Researchers at the Ottawa Hospital in Canada similarly studied nearly two hundred patients from sixty to eighty years old who didn't have atrial fibrillation but were likely to develop the condition in the future. These patients were asked to imagine that they themselves had atrial fibrillation and to consider if they would take anticoagulants for it. One group received information using qualitative language, where risk of stroke or bleeding was designated as either "low" or "moderate."

The other group received detailed quantitative data on stroke and bleeding risks, carefully framed in both positive and negative ways — for example, "3 out of 100 chance of stroke, meaning 97 out of 100 chance of not having a stroke with treatment."

In this study, patients given the most detailed information chose what researchers termed "the extremes" of treatment; more participants chose either the potent anticoagulant warfarin or no treatment at all rather than the middle-of-the-road option, aspirin. Giving more exact and understandable clinical information brought out greater individual differences in patients' preferences.

Dave Simon, the avid tennis player with atrial fibrillation whom you met at the beginning of this book, was poised to make a serious treatment decision — caught between two images of the future, a stroke or severe hemorrhage. To complicate matters, a brand-new medication had just become available. This new blood thinner required less monitoring than warfarin, and studies showed a somewhat smaller risk of bleeding. But slightly more people had heart attacks while on this new drug, for unclear reasons. Dave's cardiologist offered him the standard treatment options as well as this new medication. She showed Dave the number needed to treat with each drug, how many people needed to receive the medication to prevent one stroke from occurring.The doctor also informed Dave of what is termed "the number needed to harm," meaning how many people typically must receive the drug for one person to have a serious side effect, in this case bleeding into the gastrointestinal tract or brain.

Dave went through a deliberate process, not only examining these numbers, but also considering his mind-set. Dave had a doubter approach to treatments. He was afraid to take any of these medications, but he realized he was more terrified of having a stroke. After several sleepless nights, he made his decision. "I decided to stick with the traditional blood thinner," he told us. "I'm not an early adopter. I remembered what happened a few years ago with Vioxx, how excited everyone was about it and how doctors said it was so much better than aspirin and other drugs. Then they found out that it caused heart attacks, too. I prefer to take a medication with a longer track record." Someone else with a believer orientation might eagerly greet the news of a new anticoagulant and request to be switched to it, even if he was doing well on his current therapy.

A team of researchers studying therapy of high blood pressure made a similar observation about the wide variety of patient preferences. In this study, researchers presented a series of scenarios about hypertension therapy to both physicians and patients. Physicians and patients then were asked to determine at what point the benefits of therapy outweighed the risk of side effects, cost, and inconvenience.The researchers found that given the same information, patients were generally less likely than doctors to accept treatment for high blood pressure.The patients tended to be more risk-averse, weighing the side effects of the medications more heavily than their doctors did. In this study, one-third of the patients interviewed decided against drug therapy for high blood pressure when presented with a scenario that would qualify them for treatment based on expert opinion. Like Alex Miller, these patients didn't want the therapy recommended by their doctors. But the researchers also found that a significant subgroup of patients (15 to 20 percent) wanted treatment that had no proven benefit and was not recommended. We would term these patients maximalists — like Michelle Byrd. These people often feel that they're "ahead of the curve" in protecting their health, even though scientific data do not yet support their view.

Patients should be aware that there can be differing views among specialists about who should be treated for various conditions. For example, expert committees in Europe and the United States crafted different guidelines about when to treat high blood pressure. The group of American experts believed that the benefits outweighed the risks from treatment for mild elevation of blood pressure and wrote guidelines that advise medication for patients like Alex Miller. But in Europe, an expert committee with access to the same scientific data formulated different guidelines that don't advise treatment for mild elevation of blood pressure. In Europe, Alex and others like him would not be encouraged to take medication. Different groups of experts can disagree significantly about what is "best practice." Dr. Rodney Hayward, a widely respected researcher on health care at the University of Michigan, recently wrote in the New England Journal of Medicine that "the assessment of whether the benefit is great enough to warrant the risk of harm — i.e., the decision of where the threshold for intervention should lie — is necessarily a value judgment."

Why is it subjective, a value judgment, rather than a matter of a clear black-and-white answer? Because, Hayward continues, for many treatments there exists a substantial "gray area of indeterminate net benefit."

Hayward mentions cholesterol levels as one example of such a gray area. We examined the "net benefit" of treatment in Susan Powell's deliberation about taking a statin medication. "Net benefit" means the potential gains from the treatment minus the downsides. After seeing all the data, particularly the "number needed to treat," she didn't believe the net benefit was worth it, given the risks statins entail. In effect, Susan set a different cutoff for herself from the one some experts would apply, not because she was "health illiterate" or "irrational," but because she has a different subjective assessment from that of the experts who wrote the recommendations. We agree strongly with Hayward that within the substantial gray area of indeterminate net benefit, "physicians should defer to an individual patient's preferences in choosing whether or not to intervene."

How do recommendations for "best practice" come about? Committees of specialists are convened to draw up guidelines that aim to identify "best practice" for a certain medical condition. The principle is that guidelines should be drawn from the "best" evidence and craft ed by the "best" scientific experts in the field. These guidelines are a key component of so-called evidence-based medicine, the idea that clinical practice should be based solely on the results of scientific studies. The recommendations are presented not only to physicians, but directly to patients, in informational brochures, on the Internet, and in the media. Guidelines therefore have become one of the most powerful forces on patient decisions, since the very language used to describe their content is "best" practice. Advocates of guidelines assert that both doctors and patients should accept their recommendations as the default option. Some physicians and health policy planners conclude that patients who deviate from expert recommendations aren't adequately informed or are "irrational."

Doctors and patients certainly should consult guidelines since they provide considerable background information about disorders and treatment options. But, it's important to recognize that guidelines aren't strictly "scientific." They incorporate biases and subjective judgments. Experts select which clinical studies to use and which to discard when they formulate their recommendations. Further, all studies have limitations. They provide results from statistical averages of selected groups of study subjects. These averages may not be applicable to a particular patient. Even the most rigorous, inclusive studies cannot address all the variables of age, gender, genetics, lifestyle, diet, and concurrent medical conditions that make us individuals and often influence how effective a particular treatment will be or what sorts of side effects we might experience. Many studies exclude the elderly or those who have coexisting common medical problems. When making their final recommendations about the need for treatment, experts also apply their subjective judgment about how much risk is worth taking in order to obtain a certain benefi t. Concerns have also been raised by the Institute of Medicine about potential conflicts of interest, since some experts who write guidelines are consultants to drug and device companies or private insurers. Finally, guideline committees have an imperative for consensus and present their recommendations with one voice. As a result, their conclusions usually fail to mention dissenting opinions that may have arisen among committee members.

It's also important for patients to realize that guidelines aren't engraved in stone; they can change quickly. A survey of one hundred recommendations from expert committees found that within a year 14 percent were reversed, within two years 23 percent were changed, and fully half were overturned at five and a half years. The American College of Physicians, representing internists in the United States, stated in 2010 that all of its guidelines, if not rewritten, should be automatically suspended after five years. This isn't only because new and better data become available, but also because the composition of expert committees may change, and with this change, subjective judgments of "utility" or value may shift . Consider the guidelines that recommended the use of estrogen in virtually all postmenopausal women to prevent heart disease and dementia. These guidelines were overturned by new information from the Women's Health Initiative trial. Yet some experts remain critical of this study and still endorse parts of the earlier guidelines, believing that for some women the "value" of hormone replacement may be enough to risk the downsides.

Clearly, more than assessments of scientific evidence, more than extracting numbers from clinical research, goes into guidelines and their recommendations. The conclusions drawn about what is "best" necessarily incorporate the second part of the Bernoulli formula, the "value" or impact of a treatment on quality of life. For every individual, this impact is always subjective and cannot be distilled from objective data.

We believe that all patients should be fully informed about their condition and then asked about their preferences. Such "informed patient preference" is placed by the Institute of Medicine of the National Academy of Sciences at the pinnacle of "quality care." To be truly informed, patients should be aware of the gray zones in medicine. They must keep in mind that guidelines are not purely scientific and have a significant subjective component.

In 2010, researchers at the University of Michigan published the results of one of the first national surveys of medical decisions.The researchers contacted at random by telephone 3,100 adults age forty and older. Participants were asked a series of questions about common medical conditions they might have discussed with their doctors. A disturbing finding was that only half the patients stated they had been asked their preferences about starting medications for elevated blood pressure or a high cholesterol level. Although guidelines usually have fine print at the bottom asserting that the recommendations need to be molded to the preferences, values, and goals of the individual patient, we believe that this statement should be in large print, because patient preference is often not sought.

There is a creeping paternalism on the part of health care policy makers and insurance companies to standardize care based on guidelines. To be sure, standardization is appropriate, even essential, in some areas of medicine, like safety measures and emergency care. But where patient preferences are involved, standardization is misconceived. Yet, there are powerful incentives, often financial, to reward doctors when their patients receive treatment according to guidelines and penalize them when their patients deviate from the recommendations. Report cards that rate physicians according to compliance with guidelines are issued by insurers and often made public. We readily see how a physician might feel caught by these incentives and press patients to make choices that may not reflect either physician or patient preferences. As a patient, you want to know that your doctor is on your side, helping you to figure out an individual choice.

What if you and your physician don't agree about what is the "best" choice? In such settings, as Dr. Jacques Carter put it, physicians "negotiate" with their patient. But the ultimate choice is always the patient's, because it is the patient who either enjoys the benefit of a treatment or suffers its side effects, experiencing each within the context of his or her values and goals in life.

Patrick Baptiste had a different assessment from that of the endocrinologist about the risks and benefits of his treatment. He returned to his primary care doctor, who at his request referred him to another endocrinologist. "This doctor laid out all three options and gave me the pros and cons on each." The physician didn't immediately present one way as the best. "Instead, he asked me what I thought about each option."

The new doctor explained to Patrick that antithyroid medication could control the hyperthyroidism until the Graves' disease entered remission. But he also made it clear there was no guarantee that he would go into remission or that remission would be permanent. "If I have at least a chance of going into remission and not have to add another pill and another chronic condition to my life, then to me, it's worth a try," Patrick said. "I realize that if it doesn't work, I may need to have radioactive iodine or surgery. But I'll deal with that if and when I get there."

From Your Medical Mind by Jerome Groopman and Pamela Harzband. Copyright 2010 by by Jerome Groopman and Pamela Harzband. Excerpted by permission of Penguin Press. All rights reserved.