Or consider, too, that the success rate for cardiac resuscitations dramatized on television shows such as ER is 75 percent, while the figure in real hospitals is 15 percent.*
Although people are moved when I tell the story of how several lifelong friends were instrumental in shepherding me through my crisis—what saved my life as much as the angiogram and surgery, I suggest, was the fact that Rich and Jerry knew me and listened to me—most conversations invariably return to the “miracle of bypass surgery.”
And who can argue with this? Surely it is wonderful that this procedure exists, and yes, I wouldn’t be alive if it didn’t. What seems at least as significant as the fact that we could fix what was wrong with me, however, is the fact that we have little understanding of what went wrong, and why.
Although in telling my story I often quote Dr. Cabin saying that I was “totally anomalous,” my initial research suggests that I was not, in fact, all that anomalous, and that what mattered most in my case, as in the majority of cases of heart disease, was not the existence of the disease or the surgery that fixed it, but the judgment about the disease that led to the decision concerning surgery, and the clinical experience from which that judgment derived.
According to the American Heart Association, for example, nearly two-thirds of all sudden deaths from heart attacks in women occur in women who have no history whatsoever of chest pain. And though nearly 40 percent of women will die from heart disease, only 4 percent fear it as their leading cause of death.* (Compare this to the fact that, according to the National Center for Health Statistics, 40 percent of women fear dying from breast cancer, though only 4 percent actually will.)
When I talk about such findings with Rich, who has published a book on heart disease in women, he is hardly surprised. Despite our sophisticated testing and screening technologies, the diagnosis of heart disease, he insists, is tricky and problematic.* And when I talk not only of having been anomalous, but of having been asymptomatic, he corrects me.
“You weren’t asymptomatic,” he says. “The problem was that the doctors didn’t diagnose your symptoms, or their cause, accurately.”
Later on, Rich will walk me through my experience again and explain how and why, from our phone conversations, he became convinced, despite my seeming good health, that my heart was severely diseased and my life in grave danger. Before he does this, however, my research reinforces much of what he has already told me: that except in rare and unusually straightforward cases (a patient presenting to a doctor while in the midst of a massive heart attack, for example), for both diagnosis and treatment, it is the judgment of the cardiologist that is critical.
My story, then, may seem anomalous, unlikely, and unpredictable, but what I learn is that many people, like me, have severe and progressive heart disease without having the risk factors and symptoms we so often hear about. (The high percentage of women who die from heart disease without having chest pain, for example, Rich suggests, is due largely to the fact that in many such instances a woman’s heart disease is complicated by the coexistence of diabetes.) The American Heart Association reports that 50 percent of men and 63 percent of women who die suddenly of coronary heart disease have no previous symptoms of disease, and other studies, as Rich confirms, suggest that up to 50 percent of all people experiencing severe coronary disease and/or heart attacks have no traditional presenting symptoms or risk factors.* Moreover, Rich believes that most so-called silent heart attacks are not really silent, but present with symptoms that are either missed or, more frequently, misdiagnosed by the patient’s physician.
Until quite recently, most researchers believed that heart attacks were usually caused by the buildup of plaque (a combination of lipids, smooth muscle cells, inflammatory cells, and extracellular matrix) in the arterial walls. When this ruptures, it causes clots that create the blockages that lead to heart attacks. But we now learn that ruptured plaque is found in only two-thirds of people who have had heart attacks.* What, then, causes the clots that cause the heart attacks in the other third?
And what about cholesterol, invariably the first subject that comes up when people talk with me about my experience? “More than a third of individuals who have heart attacks have normal cholesterol levels,” Rich says. “This despite biannual meetings of the ‘experts’ who decide that ‘normal’ cholesterol is really lower than they said it was at their last meeting, and who say so with no credible data to back them up.”
The number one and number three best-selling prescription drugs in the United States in 2001, Lipitor and Zocor, are anticho-lesterol medications that have been proven effective in lowering cholesterol levels, and doing so while lowering the “bad” (LDL) cholesterol and raising the “good” (HDL). Lowering cholesterol, studies indicate, reduces heart disease and seems especially helpful to those who have already experienced a heart attack or have had heart surgery. In addition, studies indicate that giving the cholesterol-lowering drugs known as statins (Lipitor, Zocor, Lescol, Mevacor, Pravachol) to heart attack patients in the hospital before and after surgery can substantially improve their chances of survival.*
But the paradoxical finding, across all studies, is that lowering cholesterol does not prolong life.* Among people whose cholesterol is reduced there is a consistent, mysterious, and unexplained increase in deaths from other causes. In addition, most studies indicate that the risk of death increases when blood cholesterol levels go below 180 mg/dl. And we don’t understand why.
It turns out, moreover, that if all commonly known risk factors are combined—smoking, high-fat diets, high iron levels, high blood pressure, markers for inflammation, implicated genes, diabetes, and high cholesterol levels—they still account for no more than half the risk of acquiring atherosclerosis. Approximately 50 percent of people with atherosclerosis, that is, acquire it even though they do not have any elevated risk factors for the disease. Furthermore, these risk factors represent only statistical associations, not proven causes, and the exact mechanisms by which they may contribute to the development of atherosclerosis are unknown.
In addition, some researchers believe that heart disease is influenced most significantly not by the usual set of biological, genetic, and environmental factors, but by our fetal environments.* The English epidemiologist David Barker has carried out surveys suggesting a relation between nutrition in fetal life and the likelihood of developing heart disease in middle age. In several large studies, he found that death rates from cardiovascular disease fell progressively with increasing weight, head circumference, and other measures of increased development at birth. Among individuals who weighed eighteen pounds or less at one year, death rates from coronary artery disease were almost three times higher than among those who weighed twenty-seven pounds or more. Barker and his colleagues hypothesize, further, that low growth rates up to the age of one year are associated with an increased prevalence both of several risk factors for heart disease and of death rates from heart disease.
And a recent Stanford University and Veterans Affairs Health Care study of more than six thousand men, more than half of whom had an abnormal exercise-test result or a history of cardiovascular disease, concluded that “in both healthy subjects and those with cardiovascular disease peak exercise capacity achieved was a stronger predictor of an increased risk of death than clinical variables or established risk factors such as hypertension, smoking, and diabetes, as well as other exercise-test variables.”
It is not surprising, then, that despite my having coronary arteries that were almost totally blocked, two doctors, after examining me, after listening to my report of symptoms, and with data in hand—cholesterol screenings, family history, blood pressure, and echocardiogram and electrocardiogram results—while not excluding heart disease, did not diagnose it accurately.
If diagnosis is difficult, the choice of treatment for coronary disease is equally problematic, and here again, it is the judgment of the physician, and not the data from laboratory testing, that is crucial.
/> When diagnostic tests are competently administered and interpreted, they can, as in my case, identify the existence of coronary disease, its extent, and its physiological effects. But they are, as Rich says and others confirm, notoriously unreliable, or even useless, as guides when it comes to selecting the best form of treatment.*
Emergencies and life-threatening situations aside, the better I know the person I am treating, my friends tell me, the more effective I can be as a doctor. This may sound unscientific, they allow, but then the practice of medicine is not quite as scientific as people like to think.
“Put a patient with even the simplest set of maladies in front of five doctors,” Rich says, “and you might get five different diagnoses, five different prognoses, and five different recommendations for treatment.”* For that matter, he adds, give any five doctors the same set of lab tests and you will probably get a similar range of diagnoses, prognoses, and treatment plans.
“In fact,” Rich advises when, a year or so after surgery, my cholesterol levels are slightly elevated and my doctors recommend that I take a cholesterol-lowering medication, “the first thing I would do would be to take the test again.* If you send the same blood sample to two different labs, there’s a strong likelihood that you’ll get two different results.” (In January 2001, Rich persuades his own physician to have his cholesterol test redone—to have the same lab run the same blood sample back through its machines. The result? A 17 percent rise in his score, from 152 to 176. “If I had had a 17 percent rise, from 200 to 234, say—34 points above what’s supposed to be ‘normal’—and I’d been seeing all the ads about cholesterol and heart disease, I might have gone on a cholesterol medication for the rest of my life, and who knows what the side effects would be for me down the road, since we have no long-term studies of what these medications will do to us.”)
P. W. Medawar, Nobel Prize-winning doctor for his contribution to organ transplantation, observes that when people speak about the “art and science” of medicine, they invariably get them the wrong way around, assuming that the art involves merely being sympathetic to and talking with a patient, while the science involves the more difficult task of interpreting the results of sophisticated tests, which interpretations will lead to the correct diagnosis. But Medawar contends that the reverse is true—that the real “science” in medicine is, in fact, that thorough understanding of the nature of a medical problem that comes from talking at length with a patient and performing a physical examination that elicits the relevant signs of disease. From such an old-fashioned way of practicing medicine, he says, it is possible to infer precisely what is wrong in 90 percent of cases.
By contrast, Medawar points out, technological tests and procedures can frequently be misleading, and he points to the paradox that the more tests a doctor performs, the less scientific—in the sense of generating reliable knowledge—medicine becomes.*
Sherwin Nuland, a Yale physician, surgeon, and author (How We Die and Doctors: A Biography of Medicine), in considering the idea of medicine as “an imperfect science,” says that he “would go further even than that.* It is not a science at all. It remains what it has always been and will ever be—an art that uses science as well as it can, and too often incorrectly and inconsistently.”
Thus, for example, even when a test does lead to effective treatment, as with Pap smears, the troubling finding is that when the test is performed more often, the result is both fewer missed cases of disease and more false-positive results.* Reducing one kind of mistake, that is, increases others. Over the course of her lifetime, a woman’s chance of having more false positives, in fact, becomes considerably higher than her chance of developing cervical cancer itself. (In addition, such false positives typically lead to more tests, often inaccurate, and to treatment, and these tests and treatments, while often conferring little or no benefit—compare the situation with prostate cancer—are themselves anxiety-producing, painful, and risky.)
“With respect to cardiology,” Rich explains, “the problem goes something like this: the more likely the test is to be abnormal—treadmill ECT [electrocardiogram tracing] testing, nuclear cardiology, echocardiography, cardiac MRI, et cetera—and therefore suggest the presence of heart disease, the more likely it is that the result will be a ‘false positive’—meaning that the test is abnormal, but the patient is normal. In addition, these tests and scans all miss a certain percentage—ballpark, 15 percent—of abnormal patients. In these cases the test is normal, but the patient is not.”
Clinical trials and outcome studies that evaluate various ways of treating heart disease are, it turns out, remarkably inconclusive: whether a doctor recommends angioplasty, bypass surgery, drug therapy, or beating-heart surgery (bypass surgery performed without using a heart-lung machine, and sometimes without cracking open the chest), chances are patients will end up about the same. Even if one receives treatment considered optimal, there appears to be less than a 50 percent chance it will improve the likelihood that one will live longer than one would have lived without the treatment.*
Such studies and statistics, moreover, are themselves highly misleading, for the truth, as with me, is that some treatments are better for some people than they are for others. Not only is each of us different and unique, but each person’s disease is also unique, and this is what a skilled cardiologist takes into account when diagnosing a condition and when prescribing treatment. Then, too, statistics themselves represent, at best, an approximation of reality.
Stephen Klaidman, in Saving the Heart: The Battle to Conquer Coronary Disease, summarizes much of what I hear from my friends: “Clinical judgment is not an exact science, which is where the art comes in,” he writes.* Each person “is a distinct entity, anatomically, physiologically, and psychologically, and the clinician must take account of the differences. Each person’s disease is also distinct, and that, too, must be taken into account. Furthermore, since randomized clinical-trial results as reported in the medical journals provide only generalizations, there is no way of being absolutely sure, except in some relatively small number of clear-cut cases, that for patient X angioplasty is a better choice than drugs or surgery.”
“I have always been plagued by our ignorance when confronted by an individual patient,” Rich says, “and the problem we have in cardiology is that while tests can reveal the status of the disease, their prognostic accuracy is far worse than their diagnostic accuracy.
“Having atherosclerosis ain’t so bad if you know you’ll live happily with it for the next thirty years—as compared to the next thirty hours. Lowering cholesterol levels, controlling blood pressure and diet, quitting smoking, and the rest are surely important, but in each individual case, sad to say, the situation is neither so clear nor so rosy.”
But why not?
The answer, as I begin to understand it, is that it takes more than tests and screenings, scientifically true as they may seem, to deal with the complexities of each disease as it makes its home in each one of us. Klaidman makes the essential point: “The cardiologists who diagnose with subtlety and accuracy, and who best understand the idiosyncrasies of each individual patient and his or her disease…may be the most valuable clinicians because they do better than others in guiding their patients toward treatment choices that are most appropriate for them.* Their special gifts, which are becoming rarer all the time, are clinical judgment and clinical skills—that is to say, using the most basic methods to figure out what is wrong with a patient and the best way to fix it.”
“The great secret, known to internists…but still hidden from the general public, is that most things get better by themselves,” Lewis Thomas writes.* “Most things, in fact, are better by morning.” And one of the essential ingredients in the healing process is the belief the patient has in the person doing the healing.
What happens, then, I wonder, if the thoughtful and well-trained doctor we see one time may not be the doctor we see the next time—and if, because of such experiences, trust and faith
in the doctor, or in any provider of health care, begins to erode?* What happens when, under policies initiated by managed-care companies, people not only don’t have access to doctors who know them, and whom they know and trust, but see a series of doctors whose clinical skills and judgment are compromised by guidelines (guidelines monitored, generally, by people who have no medical expertise themselves) as to how much time they can allow for seeing, talking with, and examining each patient?
The answer, according to my friends, and according to preliminary outcome studies such as those sponsored by the Robert Wood Johnson Foundation and the Rutgers University Institute for Health, Health Care Policy and Aging Research, is that we are courting disaster. These studies point out that patients’ trust generally depends upon the perception that their doctors are free to act in their best interests. But how believe this when the utilization review boards and structural arrangements that govern managed care restrict choice, contradict medical decisions and control, and limit (and sometimes obstruct) doctors’ communication with patients? These studies also show that policies such as “gatekeeping” (whereby primary care providers must approve the use of specialists), along with incentives to limit care, further erode our trust as well as the independence and ability of our doctors to act freely on our behalf.*
John Kirklin, a cardiac surgeon at the Mayo Clinic in Rochester, Minnesota, asserts that “the perpetually increasing demands on surgeons, pediatric cardiologists and adult cardiologists, and their responses to these demands, have resulted in their being, as a group, less contemplative, less able to understand intimately the special circumstances of each of their patients, and perhaps less fit to help patients with heart disease make the many complex decisions required.”*
A 1997 study of 453 recent medical school graduates—residents in internal medicine and family practice—illustrates such concerns. In this study, the 453 doctors could not correctly identify the distinctive sounds of common heart abnormalities with a stethoscope 80 percent of the time. “While directors of internal medicine programs consider [cardiac auscultation] to be an essential skill for every practicing physician and would like more time to be devoted to its teaching, fewer than one third of all internal medicine programs offer any structured teaching of cardiac auscultation,” the study notes, and points out that “an even worse situation exists for lung auscultation.”*
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