The following excerpt from the new book "Your Medical Mind" by Jerome Groopman, MD and Pamela Hartzband, MD is reprinted by arrangement with The Penguin Press, a member of Penguin Group (USA), Inc. Copyright (c) Jerome Groopman and Pamela Hartzband, 2011.
Patrick Baptiste, a thirty-six-year-old personal trainer at a popularhealth club in Houston, Texas, typically bench-pressed 310to 320 pounds.
Standing just shy of six feet three inches, withbroad shoulders and a neatly trimmed goatee, Patrick had a warm andrelaxed manner that made him one of the favorite instructors amongpatrons of the gym. One day shortly before Thanksgiving, when hepositioned himself squarely on the bench to show a new member howto press properly, the weight seemed unusually heavy. Over the ensuingmonths, his strength seemed to decline, until he strained to press225 pounds.
Patrick had been eating more than usual to boost hisstrength and was surprised when he got on the scale and saw that hehad lost seven pounds. He looked at himself in the mirror and noticedthat the prominent curves of his biceps seemed a little flatter. Evenmore perplexing were several episodes of rapid heartbeat and tremblingin his hands. These episodes occurred not only after he workedout at the gym, but once when he was driving to visit his family on aday off and another time when he was stretched out on his couchwatching football. Patrick oft en felt on edge and several times was impatientwith clients at the gym. Finally, when he realized that it tookeffort even to walk up a flight of stairs, he went to see his primary caredoctor.
Patrick's physician had cared for him for several years and notedthat his pulse, normally in the low 60s typical for an athlete, was now90. As the doctor examined him, he stopped at his neck. "You have amuscular neck," the doctor said, "so I'm not sure, but your thyroidgland seems a little enlarged. That might explain what's going on here."The physician performed blood tests and called Patrick the next dayto say that his thyroid hormone levels were too high. "I'm going tosend you to an endocrinologist who specializes in thyroid conditions,"the doctor said. "In the meantime, this medication will helpwith some of your symptoms, and you should start to feel better." Heprescribed a medication called a "beta-blocker" to alleviate the tremorand slow the rapid heartbeat. "Before you see the specialist, we'll geta scan of your thyroid. He'll review the results and decide on the besttherapy."
The specialist's office was not far from Patrick's health club. Aftera short wait, he was ushered into an exam room. The doctor askedPatrick how he was feeling and then handed him a glass of water. Heasked Patrick to sip and swallow several times as he stared intently atthe front of Patrick's neck. He then stood behind Patrick, placed hisfingers around both sides of his neck, and again asked him to swallow.Taking his stethoscope from his pocket, he listened over Patrick'sneck. Finally, the doctor took out what looked like a metal ruler andmeasured 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 overactivethyroid gland." The doctor swiveled his computer screen so thatPatrick could see it. "Here, take a look at this scan of your thyroid,"the doctor said. The image looked like a huge stippled butterfly. "Thebest treatment for this condition is radioactive iodine. You swallow aradioactive pill, and it destroys the gland. Problem solved. You get itover with." The doctor paused. "After that you'll just need a daily thyroidpill. No big deal."
But, Patrick told us, for him it was a "big deal."He asked the endocrinologist what alternatives there might be toradioactive 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 makingtoo much hormone," the doctor said. "But these drugs sometimeshave terrible side effects, damaging your liver or knocking down thewhite blood cell count so you could be open to life-threatening infections."The doctor paused for a few moments, seeming to let thatinformation sink in. "Or you could have surgery to remove the gland.But that also has real risks, with anesthesia, bleeding, and the possibilityof damaging the other glands in the neck, the parathyroid glands,or even injuring the nerves to your vocal cords. This is really the bestoption."
Patrick felt unsettled by the doctor's words. "I don't trust thisidea of one-size-fits-all when it comes to medical problems," he toldus. His skepticism was the paradoxical gift of a previous illness, diabetes,diagnosed in his teens. Patrick was the oldest of five children, allborn after his family had emigrated from Haiti and settled near relativesin Houston. As a teenager, already at six feet two inches, heweighed 260 pounds, and was a defensive lineman on the high schoolvarsity football team. His mother, father, and grandparents all haddiabetes. At age nineteen, when Patrick developed periods of intensethirst and frequent urination, classic signs of diabetes, his mother usedone of her own test strips and found sugar in his urine. For severalyears he had taken oral medication and, at times, insulin injections tocontrol his blood sugar.
Initially, Patrick said, his adherence to his prescribed diabetestherapy might well be described as "pretty poor." Like many of hisage, he often skipped his medication, so that his blood sugar swungwidely. "My diet was terrible, chips and soda, because I wanted to benormal, like all the other kids," he said. His doctors and his motherwarned Patrick about the kidney failure and blindness that can resultfrom 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 thedoctors told me that I could become impotent, that got my attention."Diabetics are vulnerable to nerve damage because the small blood vesselsthat feed the nerves can become diseased; if the nerves in the penissuffer this complication of the disorder, impotence results. "Finally, Iheard something that was really important to me. It motivated me totake my diabetes seriously, and I began to take care of myself and followthe doctor's advice."
Patrick lost weight, and on a carefully controlled diet and a regularregimen of exercise, his blood sugar returned to normal. Now hetook only one pill a day to keep his diabetes in check and didn't needinsulin. Patrick told us that when he first developed his symptoms ofhyperthyroidism, he thought it might be due to his diabetes, that hissugar was out of control. But it wasn't.
Because his insurance coverage had changed a few times over theyears, Patrick had seen several diabetes specialists, and he'd discoveredthat they didn't all agree on what was best for him, which oral medicationsto take, whether or not he should also be on insulin, and evenhow tightly he should regulate his blood sugar. "I know from my ownwork as a trainer that you need to individualize exercise regimens,because diff rent bodies advance at different speeds." Whenever Patrickworked with a client at the gym, he tried to define the person'sgoals, desired weight, and level of fitness, and then they worked together,regularly assessing whether they were on the right track orneeded to rethink their approach. He couldn't imagine telling a clientthat there was one "best" path to fitness.
Although Patrick had no prior knowledge of Graves' disease orthe options for treatment, he felt he was being told--too quickly andtoo definitively--that there was one "best" approach. As it happens,clinical research supports Patrick's thinking. A group of endocrinologistsat the Karolinska University Hospital in Stockholm, Sweden,conducted a study to assess the benefits and risks of the three commontreatments for Graves' disease. They randomly assigned 179 patientsto take antithyroid medication, undergo surgery on their thyroidgland, or receive radioactive iodine; the follow-up time was at leastfour years. The study showed that all three treatments were equallyeffective in controlling the disorder. Importantly, 90 percent of thepatients were satisfied with their treatment--no matter which treatmentthey'd had--and would recommend it to a friend.
What Patrick experienced with his endocrinologist reflects acommon and understandable phenomenon: The doctor projects hisor her own preferences onto the patient. This has been documentedin studies of a wide variety of conditions ranging from asthma to autoimmunearthritis of the spine, from prostate cancer to esophageal disease.Here, the endocrinologist truly believed that radioiodine therapywas best. His reasons for preferring this treatment were that it wassimple--one radioiodine pill--and definitive--"problem solved." Butnot every endocrinologist shares this view. An international survey ofthyroid specialists showed that about two-thirds of American endocrinologistsfavored radioiodine for treatment of Graves' disease, butonly 22 percent of European and 11 percent of Japanese specialistsdid. Outside the United States, endocrinologists favored antithyroiddrugs. Endocrinologists around the world have access to the same datafrom clinical studies and are schooled in the risks and benefits of eachtreatment. Yet the default option, presented as what is "best" for thepatient, is strikingly different in these three regions. Part of the reasonfor this difference is likely cultural. The Japanese experience with nuclearweapons at Hiroshima and Nagasaki undoubtedly colors theirviews on radiation exposure. The 2011 earthquake and tsunami thatdamaged the nuclear reactors in Japan will likely amplify this. WesternEurope is also leery of radiation, and this attitude was later reinforcedby the accident at the Chernobyl nuclear plant.
The search for the "best choice" takes us to an eighteenth-centuryDutch mathematician named Daniel Bernoulli. At the time,Holland was a hub of world commerce, and its traders were makingdecisions about buying and selling everything from Asian spices toCaribbean sugarcane. Bernoulli was born in the city of Groningen in1700. His father, a mathematician, encouraged him to study businessto assure himself a good income. At first, Bernoulli refused. Later, heagreed to study both business and medicine, but only under the conditionthat his father instruct him privately in mathematics. He ultimately became a professor of medicine, metaphysics, and naturalphilosophy at the University of Basel in Switzerland. His seminal workin fluid mechanics helps explain how birds fly and was crucial to thedevelopment of airplanes. In 1738, he turned his attention to probabilitytheory and devised a formula that he believed would calculatethe wisdom of any decision where the outcome was uncertain and thechoice involved risk. He proposed that by multiplying the probabilityor chance of an outcome by the utility of that outcome, meaning howmuch we value it, we obtain a number, the "expected utility." The highest number, the greatest "expected utility," indicates the most rationalchoice.
(probability of outcome) × (utility of outcome) = expectedutility
Bernoulli was thinking mostly about choices that involved goodsand money, and his formula for "rational" decision making has beenwidely applied in economics. Over the last few decades, however, "expectedutility" theory has moved beyond economics and into clinicalmedicine. Researchers have proposed that doctors should advise a patientlike Patrick Baptiste of his best option by using Bernoulli's calculations.First, the physician would tell Patrick the probability of aclinical outcome and then ask him to place a numerical value or "utility"on his health state if that outcome occurred. Multiplying thechance that a particular outcome might occur by the numerical valuePatrick placed on living with that outcome yields a number; the highestnumber indicates his most rational or "best" choice.
This formula has great appeal, as it pinpoints two key componentswe all should consider when choosing among different options:what is likely to happen and how our life would be affected if it didhappen. 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 ofhyperthyroidism. But there are differences in potential negative outcomesand side effects, as well as in quality of life in the future.
Let's first imagine that the endocrinologist advising Patrick usedBernoulli's equation. As all the treatments can be effective in controllinghyperthyroidism, the probability of this outcome is equivalent forall three therapies. What differs are the potential side effects. Patrick'sphysician views the side effects of antithyroid medication and surgeryas much more serious than those of radioactive iodine. So he wouldassign these treatments a lower "utility" or value, and he would logicallyarrive at treatment with radioactive iodine as the best option. Heframed 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" todestroy his thyroid gland with radioactive iodine so that he would haveto take a thyroid hormone pill every day for the rest of his life. "I don'tlike having to take medication every day for my diabetes. And I didn'twant to commit myself to taking another pill every day--to have anotherchronic condition." He explained that "when I watched my diet,exercised, and controlled my weight, I was able to come off insulininjections. But if you destroy the thyroid gland, this is permanent--Ihave no opportunity to get off that thyroid pill."
Patrick views the need to take thyroid medication permanentlyin strongly negative terms. So for him, radioactive iodine and surgeryhave much less "utility" than antithyroid medication and would notbe valued as "best" for him.
Of course, another patient might solve this equation differently.Anna Gonzales, a forty-two-year-old journalist with three teenagechildren and a hectic schedule, also developed Graves' disease.When her endocrinologist suggested treatment with radioactiveiodine, she readily agreed. "I want this taken care of quickly," she explained.When we asked her if she was bothered by the idea of takinga 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 surgeryfor treatment of her Graves' disease. "I'm really afraid of radioactiveiodine," she told us. "No one can guarantee 100 percent that I won'thave some kind of side effect that is not known about now, maybeeven cancer."
But Patrick had no fear of radiation and no particular bias againstsurgery. "I simply don't want to be forced to take another pill everyday for the rest of my life," he told us.
In the field of decision analysis, the utility or value that a person assignsto a particular outcome is termed his "preference." Researchershave found that patients oft en construct their preferences on the spotwhen the doctor gives a diagnosis and recommends a treatment. Suchpatients are something of a "blank slate" upon which the doctor can"write" his or her own preference. In this setting, the patient is especiallysusceptible to how the physician frames the pros and cons of thetreatment.
The endocrinologist who advised Patrick framed his remarks ina way that clearly reflected his own bias by emphasizing the side effectsof treatments other than radioactive iodine. He presented radioactiveiodine as the standard or "default" option. Research in behavioral psychologyshows that most people will accept the default option; theyassume that what is routinely recommended is "best." It takes effortfor a non-expert to decline the default option and seek an alternative.But that's exactly what Patrick did. Because of his prior experienceswith diabetes, he'd developed certain views about health. He wasn't a"blank slate," and he didn't construct his preferences on the spot. Forhim, past was prologue.
We should then ask why Patrick's endocrinologist had such astrong bias for radioactive iodine and framed his advice as he did.Perhaps he'd had bad experiences with antithyroid medications, wherea patient had suffered a sharp drop in white blood cell count and developeda serious infection; or perhaps one of his patients had sufferedserious complications from thyroid surgery. If so, this would reflect an"availability" bias: a dramatic past case readily recalled that coloredthe doctor's thinking. But it simply may be that the endocrinologistwas conforming to the cultural preference of his colleagues in theUnited 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, permanenthypothyroidism that required daily treatment, would deeplydisturb his life. Such strongly held personal views are at times difficultfor others to fathom. The endocrinologist who evaluated Patrickcould not understand why adding one more pill could be a "big deal."Indeed, as physicians, we oft en prescribe medication with the assumptionthat it is "no big deal." And we assume that the patient willfeel the same. However, a study of common medical conditions--including osteoarthritis of the hip and knee, benign enlargement ofthe prostate gland, or a ruptured disk--found significant differencesin how patients and physicians weighed the goals and consequencesof available treatments, including the burden of taking daily medication.Patients should be aware that doctors and other experts mayframe information in a way that reflects their own preferences. Asphysicians, we've both found ourselves at times too quickly tellingour patients which treatments we prefer rather than working withthem to understand their own thinking. Of course, patients may want,and oft en ask, what their physicians think is best. But that shouldoccur after information is presented in a neutral way.
This divide between doctors' and patients' preferences has beenstudied in depth in treatment of another problem, atrial fibrillation,the condition that affected Dave Simon. This abnormal cardiacrhythm is very common: About 1 percent of Americans in their fiftiessuffer from it, and 5 to 10 percent of those who are seventy or olderdo. Based on data from the Framingham Heart Study, it is estimatedthat over the course of a lifetime, atrial fibrillation or a related rhythmcalled 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 calledthe atrium contracts abnormally, so that the heart beats in a disorganizedand irregular way. Blood can pool in the heart, and clots canform. These clots can then be pumped out to the body and result in astroke. Patients with atrial fibrillation are oft en treated with "blood thinning"medications called anticoagulants, like warfarin or aspirin,that help prevent clots from forming. But these treatments can causeprofuse bleeding. Such hemorrhaging is most common in the gastrointestinaltract but can be particularly devastating when it occurs inthe brain. So the patient with atrial fibrillation must choose whetherto take medication that may prevent a stroke from a clot but can causeserious bleeding.
Researchers at Dalhousie University in Nova Scotia interviewedsixty physicians who were treating patients with atrial fibrillation.They also interviewed a similar number of patients who did not haveatrial fibrillation but were at high risk for developing this condition.Each doctor and each patient was asked to consider treatment optionsfor a theoretical group of one hundred patients who had atrial fibrillation:Options included no therapy, aspirin, or warfarin. Both thedoctors and the patients were presented the same numerical informationabout the chances of stroke and bleeding for each option andthen were asked if the treatment was justified. The patients placedsignificantly more value or "utility" on avoiding stroke, while the physiciansplaced more value on avoiding bleeding. Although there wasno information about why the doctors valued the risks and benefitsof the treatment differently from the patients, the researchers concluded,"The views of the individual patient should be consideredwhen decisions are being made about treatment for people with atrialfibrillation."
Researchers at the Ottawa Hospital in Canada similarly studiednearly two hundred patients from sixty to eighty years old who didn'thave atrial fibrillation but were likely to develop the condition in thefuture. These patients were asked to imagine that they themselves hadatrial fibrillation and to consider if they would take anticoagulants forit. One group received information using qualitative language, whererisk of stroke or bleeding was designated as either "low" or "moderate."The other group received detailed quantitative data on stroke andbleeding risks, carefully framed in both positive and negative ways--for example, "3 out of 100 chance of stroke, meaning 97 out of 100chance of not having a stroke with treatment."
In this study, patients given the most detailed information chosewhat researchers termed "the extremes" of treatment; more participantschose either the potent anticoagulant warfarin or no treatmentat all rather than the middle-of-the-road option, aspirin. Giving moreexact and understandable clinical information brought out greaterindividual differences in patients' preferences.
Dave Simon, the avid tennis player with atrial fibrillation whomyou met at the beginning of this book, was poised to make a serioustreatment decision--caught between two images of the future, astroke or severe hemorrhage. To complicate matters, a brand-newmedication had just become available. This new blood thinner requiredless monitoring than warfarin, and studies showed a somewhatsmaller risk of bleeding. But slightly more people had heart attackswhile on this new drug, for unclear reasons. Dave's cardiologist offeredhim the standard treatment options as well as this new medication.She showed Dave the number needed to treat with each drug, howmany people needed to receive the medication to prevent one strokefrom occurring. The doctor also informed Dave of what is termed "thenumber needed to harm," meaning how many people typically mustreceive the drug for one person to have a serious side effect, in this casebleeding into the gastrointestinal tract or brain.
Dave went through a deliberate process, not only examiningthese numbers, but also considering his mind-set. Dave had a doubterapproach to treatments. He was afraid to take any of these medications,but he realized he was more terrified of having a stroke. Afterseveral sleepless nights, he made his decision. "I decided to stick withthe traditional blood thinner," he told us. "I'm not an early adopter. Iremembered what happened a few years ago with Vioxx, how excitedeveryone was about it and how doctors said it was so much better thanaspirin 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 newsof a new anticoagulant and request to be switched to it, even if he wasdoing well on his current therapy.
A team of researchers studying therapy of high blood pressuremade a similar observation about the wide variety of patient preferences.In this study, researchers presented a series of scenarios abouthypertension therapy to both physicians and patients. Physicians andpatients then were asked to determine at what point the benefits oftherapy outweighed the risk of side effects, cost, and inconvenience.The researchers found that given the same information, patients weregenerally less likely than doctors to accept treatment for high bloodpressure. The patients tended to be more risk-averse, weighing the sideeffects of the medications more heavily than their doctors did.In this study, one-third of the patients interviewed decidedagainst drug therapy for high blood pressure when presented with ascenario that would qualify them for treatment based on expert opinion.Like Alex Miller, these patients didn't want the therapy recommendedby their doctors. But the researchers also found that asignificant subgroup of patients (15 to 20 percent) wanted treatmentthat had no proven benefit and was not recommended. We wouldterm these patients maximalists--like Michelle Byrd. These peopleoft en 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 amongspecialists about who should be treated for various conditions. Forexample, expert committees in Europe and the United States crafteddifferent guidelines about when to treat high blood pressure. Thegroup of American experts believed that the benefits outweighedthe risks from treatment for mild elevation of blood pressure andwrote guidelines that advise medication for patients like Alex Miller.But in Europe, an expert committee with access to the same scientificdata formulated different guidelines that don't advise treatment formild elevation of blood pressure. In Europe, Alex and others like himwould not be encouraged to take medication. Different groups of expertscan disagree significantly about what is "best practice."Dr. Rodney Hayward, a widely respected researcher on healthcare at the University of Michigan, recently wrote in the New EnglandJournal of Medicine that "the assessment of whether the benefit is great enough to warrant the risk of harm--i.e., the decision ofwhere the threshold for intervention should lie--is necessarily a valuejudgment."
Why is it subjective, a value judgment, rather than a matter of aclear black-and-white answer? Because, Hayward continues, for manytreatments there exists a substantial "gray area of indeterminate netbenefit."
Hayward mentions cholesterol levels as one example of such agray area. We examined the "net benefit" of treatment in Susan Powell'sdeliberation about taking a statin medication. "Net benefit" meansthe potential gains from the treatment minus the downsides. Afterseeing all the data, particularly the "number needed to treat," she didn'tbelieve the net benefit was worth it, given the risks statins entail. Ineffect, Susan set a different cutoff for herself from the one some expertswould apply, not because she was "health illiterate" or "irrational,"but because she has a different subjective assessment from that ofthe experts who wrote the recommendations. We agree strongly withHayward that within the substantial gray area of indeterminate netbenefit, "physicians should defer to an individual patient's preferencesin choosing whether or not to intervene."
How do recommendations for "best practice" come about? Committeesof specialists are convened to draw up guidelines thataim to identify "best practice" for a certain medical condition. Theprinciple is that guidelines should be drawn from the "best" evidenceand crafted by the "best" scientific experts in the field. These guidelinesare a key component of so-called evidence-based medicine, theidea that clinical practice should be based solely on the results ofscientific studies. The recommendations are presented not only tophysicians, but directly to patients, in informational brochures, on theInternet, and in the media. Guidelines therefore have become one ofthe most powerful forces on patient decisions, since the very languageused to describe their content is "best" practice. Advocates of guidelinesassert that both doctors and patients should accept their recommendations as the default option. Some physicians and health policyplanners conclude that patients who deviate from expert recommendationsaren't adequately informed or are "irrational."
Doctors and patients certainly should consult guidelines sincethey provide considerable background information about disordersand treatment options. But, it's important to recognize that guidelinesaren't strictly "scientific." They incorporate biases and subjectivejudgments. Experts select which clinical studies to use and which todiscard when they formulate their recommendations. Further, allstudies have limitations. They provide results from statistical averagesof selected groups of study subjects. These averages may not be applicableto a particular patient. Even the most rigorous, inclusive studiescannot address all the variables of age, gender, genetics, lifestyle,diet, and concurrent medical conditions that make us individuals andoft en influence how effective a particular treatment will be or whatsorts of side effects we might experience. Many studies exclude theelderly 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 muchrisk is worth taking in order to obtain a certain benefit. Concerns havealso been raised by the Institute of Medicine about potential conflictsof interest, since some experts who write guidelines are consultants todrug and device companies or private insurers. Finally, guideline committeeshave an imperative for consensus and present their recommendationswith one voice. As a result, their conclusions usually failto mention dissenting opinions that may have arisen among committeemembers.
It's also important for patients to realize that guidelines aren'tengraved in stone; they can change quickly. A survey of one hundredrecommendations from expert committees found that within a year14 percent were reversed, within two years 23 percent were changed,and fully half were overturned at five and a half years. The AmericanCollege of Physicians, representing internists in the United States,stated in 2010 that all of its guidelines, if not rewritten, should beautomatically suspended after five years. This isn't only because newand better data become available, but also because the composition ofexpert committees may change, and with this change, subjective judgments of "utility" or value may shift . Consider the guidelines that recommendedthe use of estrogen in virtually all postmenopausal womento prevent heart disease and dementia. These guidelines were overturnedby new information from the Women's Health Initiative trial.Yet some experts remain critical of this study and still endorse parts ofthe earlier guidelines, believing that for some women the "value" ofhormone replacement may be enough to risk the downsides.
Clearly, more than assessments of scientific evidence, more thanextracting numbers from clinical research, goes into guidelines andtheir 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 objectivedata.
We believe that all patients should be fully informed about theircondition and then asked about their preferences. Such "informedpatient preference" is placed by the Institute of Medicine of theNational Academy of Sciences at the pinnacle of "quality care." To betruly informed, patients should be aware of the gray zones in medicine.They must keep in mind that guidelines are not purely scientificand have a significant subjective component.
In 2010, researchers at the University of Michigan published theresults of one of the first national surveys of medical decisions. Theresearchers contacted at random by telephone 3,100 adults age fortyand older. Participants were asked a series of questions about commonmedical conditions they might have discussed with their doctors. Adisturbing finding was that only half the patients stated they had beenasked their preferences about starting medications for elevated bloodpressure or a high cholesterol level. Although guidelines usually havefine print at the bottom asserting that the recommendations need tobe molded to the preferences, values, and goals of the individual patient,we believe that this statement should be in large print, becausepatient preference is oft en not sought.
There is a creeping paternalism on the part of health care policymakers and insurance companies to standardize care based on guidelines.To be sure, standardization is appropriate, even essential, insome areas of medicine, like safety measures and emergency care. Butwhere patient preferences are involved, standardization is misconceived.Yet, there are powerful incentives, oft en financial, to rewarddoctors when their patients receive treatment according to guidelinesand penalize them when their patients deviate from the recommendations.Report cards that rate physicians according to compliance withguidelines are issued by insurers and oft en made public. We readily seehow a physician might feel caught by these incentives and press patientsto make choices that may not reflect either physician or patientpreferences. As a patient, you want to know that your doctor is onyour 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 thepatient's, because it is the patient who either enjoys the benefit of atreatment or suffers its side effects, experiencing each within the contextof his or her values and goals in life.
Patrick Baptiste had a different assessment from that of the endocrinologistabout the risks and benefits of his treatment. He returnedto his primary care doctor, who at his request referred him toanother endocrinologist. "This doctor laid out all three options andgave me the pros and cons on each." The physician didn't immediatelypresent one way as the best. "Instead, he asked me what I thoughtabout each option."
The new doctor explained to Patrick that antithyroid medicationcould control the hyperthyroidism until the Graves' disease enteredremission. But he also made it clear there was no guarantee that hewould go into remission or that remission would be permanent."If I have at least a chance of going into remission and not haveto add another pill and another chronic condition to my life, then tome, it's worth a try," Patrick said. "I realize that if it doesn't work, I mayneed to have radioactive iodine or surgery. But I'll deal with that if andwhen I get there."
About the authors:
Jerome Groopman, MD, and Pamela Hartzband, MD, are on the staff of Beth Israel Deaconess Medical Center and on the faculty of Harvard Medical School, both in Boston. They have collaborated on articles for The New York Times, The Wall Street Journal, and The New England Journal of Medicine, among other publications. Groopman, a staff writer for The New Yorker, is the author of four books, including the New York Times bestseller How Doctors Think.
This commentary comes from an independent investor or market observer as part of TheStreet guest contributor program. The views expressed are those of the author and do not necessarily represent the views of TheStreet or its management.