The Consolation of Diagnosis
THE STORY I TELL others in the weeks and months following surgery—and the story I first tell (and sell) to myself—is this: A sixty-year-old man in good spirits, excellent physical shape, and seeming good health, without apparent risk factors or symptoms, discovers that his major coronary arteries are nearly 100 percent blocked. Although two doctors miss the diagnosis, an old friend who is a cardiologist makes the correct diagnosis, and he does so by telephone from three thousand miles away. The sixty-year-old man is rushed into emergency surgery, his life is saved, and he emerges from the surgery, like his name, newly born—healthy, energized, and radiant with the gift of life.
When I tell the story, and friends ask about cholesterol levels, blood pressure, smoking, exercise, diet, stress, and the rest, and when I reply that I seem to have had none of the classic risk factors or symptoms, most people nod and say, “Oh—then it must be genetic.”
When I respond by saying that I don’t really have what doctors call “a positive family history of coronary disease,” I sense that people feel not merely puzzled, but betrayed. If a man in excellent health, without risk factors or overt symptoms—a sixty-year-old man swimming a mile a day and able to play competitive tennis and basketball with twenty-year-olds—can be this close to death, and if doctors seem clueless as to why this is so, then in how much danger are most of us most of the time?
More than two dozen friends go on what they call “Jay Neugeboren-inspired diets” (two close friends lose more than fifty pounds each within six months) and/or to their doctors—for checkups, cholesterol screenings, electrocardiograms, stress tests. You were in the best shape of any of us, they say. If this could happen to you…
Although we may give lip service to the notion that our fates are never really in our own hands and that the forces that determine our destinies—when and how and why we die, or when and how and why we survive and live on—are beyond our control, when it comes to our own lives, most of us are reluctant to believe we are as ignorant and helpless as it often seems we are.
(On the day I begin writing this chapter, Arthur Rudy calls to tell me about a colleague—a fifty-three-year-old doctor in excellent health, who, while exercising on a treadmill, died this past week of a heart attack. The man was not a smoker, not overweight, had no apparent risk factors or symptoms. His case seemed so surprising—so anomalous—that the family requested an autopsy. The results from the autopsy? No help, Arthur says. Not the least clue as to the possible cause of the heart attack.)
Celebrating my first Thanksgiving after surgery, in November of 1999, thirty of us gathered at a cousin’s home, one of my cousins looks at our children—a dozen of them, some with spouses and children of their own now, sitting around their own table as they have each Thanksgiving for the past twenty-five years—and says that she envies them and their generation the great medical progress they are going to benefit from during the first decades of the new century, including the miracle, not merely of innovations such as bypass surgery or gene therapy, but of “total body transplants.”*
When I suggest to my cousin, as to others, that, my own good fortune notwithstanding, things may not be quite as miraculous as the media would have us believe, what I usually hear back is that yes, there may be some glitches along the way, but if, say, current medications stop being effective, they—the mysterious, omnipotent, omniscient they— will doubtless come up with new medications, gene therapies, or as-yet-undreamt-of remedies to replace old and ineffective treatments.
For just as science has come up with vaccines and antibiotics for measles, diphtheria, smallpox, whooping cough, polio, pneumonia, typhoid, and tuberculosis, so, people tell me, it will come up with new cures for virtually all our remaining illnesses—for heart disease, cancer, multiple sclerosis, schizophrenia, clinical depression, AIDS, et cetera. When I mention new and reemerging diseases—E. coli, ebola, malaria, tuberculosis, hospital-acquired staph—people acknowledge their existence yet talk of them as if they are, in their danger to us as in their geography, distinctly remote. (Consider, though, that 70 percent of hospital-acquired infections now involve drug-resistant organisms, and that in metropolitan New York City alone, in 1995, 7,800 patients acquired drug-resistant staph infections during hospital stays, from which 1,400 died.*)
For friends and family in the months following surgery, I seem to be living proof that science, in the guise of technology, will, like God, always provide. My initial reading and research, however, along with conversations with Rich, Jerry, Phil, and Arthur, begin to tell me another and quite different story.
The advent of the germ theory of disease in the late nineteenth century, along with early successes in the management of infectious diseases, encouraged a faith in medical science that was grounded not in clinical experience but in laboratory research, which research was grounded in the late-nineteenth- and early-twentieth-century assumption that disease was defined by some biological defect or anomaly taking place in an otherwise normal human being, and that for each such specific abnormality we have or will discover a specific medical treatment that will cure it.
In our time such beliefs—beliefs that, as one doctor writes, have downgraded “the importance of wisdom and experience in favor of spurious objectivity” and that have effectively devalued clinical judgment and the interaction between doctor and patient—are constantly encouraged in both the popular media and in direct-to-consumer marketing by drug companies.*
This, for example, from a Time magazine preface to a Special Issue, The Frontiers of Medicine (Fall 1996): “Throughout history, bursts of knowledge—the Renaissance, the Age of Exploration, the Industrial Revolution—have created a succession of new plateaus for human achievement. Medicine is now experiencing just such a surge of enlightenment and advance, producing a parade of breakthroughs so flabbergasting that they are routinely described as ‘revolutionary’ or even…by the decidedly unscientific encomium of ‘miracle.’” Or this announcement, in large type on the front cover of New York magazine (February 7,2000): “We are going to see a global conquering of cancer in five to ten years.” Or this, in a full-page ad in the New York Times (October 3, 2000): “At Pfizer we’re determined to find the cures of the future. A cure for your father’s Alzheimer’s, your sister’s heart disease, your best friend’s diabetes. A cure for the ailments that touch all our families. To help create this better world, we’ve decided to create an even better company…”
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.”*
Although a human being using a stethoscope may not be the only or best way to detect heart or lung abnormalities, it remains a most reliable and accurate way of doing so. “We chose cardiac auscultation,” the authors conclude, “because there is evidence that this skill, competently performed, is a sensitive, highly specific, and cost-effective method of detecting valvular heart disease in asymptomatic subjects. In a larger sense, however, we chose cardiac auscultation as a paradigm for all bedside diagnostic skills. Thus, deficiencies similar to those we found for cardiac auscultation might exist in other important areas and deserve further exploration.”
The danger implicit in such a deterioration of clinical skills came home to me when my son Aaron went for a routine physical and our family practitioner, David Katz, listening to Aaron’s heart with a stethoscope, heard something he thought abnormal. Dr. Katz sent Aaron to a cardiologist. The cardiologist heard the same sound, did an echocardiogram, and confirmed Dr. Katz’s suspicion—that Aaron had a leaking aortic valve. Because blood normally flowing directly from the left ventricular chamber into the aorta was backwashing into the heart through the leaking valve (aortic insufficiency), the left ventricular chamber of Aaron’s heart was slightly enlarged. In addition, because the aortic valve did not fully close, pathogens could adhere to the rough surface of the valve, thus making it prone to infection (endocarditis).
Had Dr. Katz not recognized the tell-tale sound, and had Aaron not, since that time, had regular exams and echocardiograms to monitor his condition (a condition that requires no restriction of activity), and taken medications (antibiotics for dental work or any so-called dirty surgery, and a blood pressure medication to reduce the pressure on the enlarged ventricle), the consequences for him might have been grave indeed.
(William Osler, the famed Johns Hopkins physician, according to his biographer Michael Bliss, would tell his students that “if they did not do their business properly, when they got to heaven they would be met by large numbers of little children, shaking their fingers and saying, ‘You sent us here.’”)*
There are also, my friends report, tangible costs that arise from our infatuation with technology, including the tendency for doctors to perform needless and costly interventions (screenings, angioplasties, bypasses), as well as interventions at which they are less than competent. Rich is incensed, for example, by the numbers of useless and often failed bypasses and angioplasties he has witnessed, and by the conflicts of interest that too often determine the kind and quality of treatment patients receive. His indignation and his fears are confirmed by others. Dr. Stephen Oesterle, director of interventional cardiology at Massachusetts General Hospital, for example, believes that “50 percent of the angioplasty that goes on is unnecessary”—a figure that translates to more than one hundred thousand unnecessary procedures a year in the United States alone.*
In addition, many cardiologists and cardiac surgeons have financial interests in the companies whose products—stents, medications, catheters, surgical instruments—they use; many are investigators in clinical trials in whose outcomes they have a financial stake; and many go on the road as paid speakers to medical conventions and hospitals, promoting new drugs or devices in whose sale and use they have financial interests.* Generally, too, patients will be totally unaware of these interests and conflicts of interest, or of the degree to which these interests influence diagnosis and treatment.
Technology companies survive and grow by innovating, a by-product of which is the continuing obsolescence of their products as they are replaced by newer ones, and so they inundate practicing physicians with new technologies, many of which have not been adequately tested. Before a complicated new system for opening arteries is in place, for example, a new one may arrive on the market to replace it. And while this, as Stephen Klaidman explains, “might be fine for cutting-edge cardiologists and cardiac surgeons who thrive on such challenges…it is not the best thing for average practitioners with average skills operating in small, understaffed community hospitals, or for their patients.”
But patients rarely know that their local cardiologist, who may do only a few dozen balloon angioplasties a year, should not be doing complicated stent placements without proper training. “All they know,” Klaidman writes, “is that they’ve seen an (often hyped-up) version of the new device or procedure in the news media or maybe even on the Internet, they want it, and they tell the local cardiologist, in effect, ‘If you can’t or won’t do it, I’ll find somebody else who will.’* This creates pressure to use the latest technology, whatever it is…”
In The Lost Art of Healing, Nobel Prize-winning physician Bernard Lown, no stranger to the benefits of technology—Lown is the inventor of the defibrillator and of cardioversion for cardiac resuscitation, and is also responsible for many elements of the modern cardiac care unit—emphasizes the priority of listening to the patient and of taking a careful history. “The time invested in obtaining a meticulous history is never ill spent,” he asserts.* “Careful history-taking actually saves time. The history provides the road map; without it the journey is merely a shopping around at numerous garages for technological fixes.”
“I am convinced,” he writes, “that listening beyond the chief complaint is the most effective, quickest, and least costly way to get to the bottom of most medical problems. A British study showed that 75 percent of the information leading to a correct diagnosis comes from a detailed history, 10 percent from the physical examination, 5 percent from simple routine tests, 5 percent from all the costly invasive tests; [while] in 5 percent, no answer is forthcoming.”
It does not seem at all nostalgic, then, to hear my friends quote the familiar saying that the secret of the care of the patient is in caring for the patient. “The good physician knows his patients through and through,” Dr. Francis Peabody wrote in 1927, “and his knowledge is bought deeply.* Time, sympathy and understanding must be lavishly dispensed, but the reward is to be found in that personal bond which forms the greatest satisfaction of the practice of medicine. One of the essential qualities of the clinician is interest in humanity, for the secret of the care of the patient is in caring for the patient.”
In the weeks and months following surgery, I reflect, also, on elements of my experience that are truly anomalous but that have little to do with biology or technology: if I had not had the kind of excellent health insurance I had (a kind that allows me to use any doctor or hospital anywhere) and the job that allowed me this health insurance; and if I had not been as well connected as I was with doctors who knew me and listened to me; and if I had not received the prompt and expert medical care I received in an excellent hospital because of my insurance and my friendships; and if I had not had the self-confidence to persist in trying to discover why I was experiencing seemingly unexceptional symptoms; and if I had not had the education and the will (are there genetic markers for will, self-confidence, or persistence—medications that can bring them into being or correct their absence?) that enabled me to be in otherwise good health; and if I had not had the good health that allowed me to survive coronary artery disease and surgery without harmful or permanent side effects, would I be here to tell my tale?
I think of the hours I have spent on the phone with insurance companies, for my children and myself—trying to get coverage for procedures, arguing about referrals and reimbursements, calling again and again (I once logged more than three dozen calls—plus letters—in an attempt to get our provider to provide basic psychotherapy services), and wondering, in the midst of my own rising frustrations, how people without my determination and persistence—and/or people for whom English is not their native tongue—even got through the telephone menus one has to navigate simply to talk with a live human being. After an afternoon rich in such frustration, a friend of mine—a self-confident, articulate professional woman who is director of a large division of a major publishing company—responded to my tale of futility with one of her own: of how the week before, having to deal for most of an afternoon with her health insurance company, she had been left depleted and defeated. “I couldn’t believe it,” she said. “I got off the phone finally, closed my door, and just wept.”
Consider, too, what happens to those who are not, like my friend and I, white, well educated, well insured, or insured at all. In all significant categories of mortality and morbidity, for example, blacks in America, like the poor in general, lag significantly behind whites, and it has been well established that this is largely a result of their receiving inferior medical care.* For when blacks have access to the same quality of medical care, the results are markedly different. One recent study, for example, involving 39,190 men admitted for illness at 147 Veterans Administration hospitals, found that black patients treated at these hospitals had lower mortality rates than white patients for six common diseases—pneumonia, angina, congestive heart failure, chronic obstructive pulmonary disease, diabetes, and chronic kidney failure. Death rates at thirty days after admissions were 4.5 percent for blacks and 5.8 percent for whites, and this pattern also held true at six months and for longer stays.
I wonder also about the degree to which my attitude before and after surgery—the optimism Jerry found so unusual—contributed to the success of the surgery and to my swift recovery, and to what degree the friendship and affection of friends and family contributed to this attitude.
What my friends tell me they have seen again and again—the role a patient’s attitude plays in a patient’s ability to get well and recover, and often from conditions that prove fatal to those with less hopeful or optimistic attitudes—is something doctors see every day in their practice, and something they have seen throughout recorded history. (In his Precepts, Hippocrates, in the fifth century B.C., noted that “some patients, though conscious that their condition is perilous, recover their health simply through their contentment with the goodness of the physician,” and Plato is said to have remarked that “the mere belief in the efficiency of a remedy will indeed help in a cure.”)*
I seemed anomalous because little in my condition or history indicated the need for or probability of bypass surgery, but perhaps the fact of bypass surgery itself, with its often spectacular successes, is, in the larger scheme of things medical, also anomalous. Perhaps, too, our gratitude for the existence of this and other instances of what we have come to call heroic medicine (bypasses, transplants, neonatal technologies) often blinds us to more fundamental and urgent medical needs.
For the two million people living with AIDS in the developed world, for example, the introduction of highly active antiretroviral treatment (HAART) in recent years has cut the rate of disease development and death from AIDS by over 90 percent.* But for the more than thirty million HIV-infected people who live in poorer countries (including at least a half-million children who become infected each year), these drugs, largely because of their high costs, are not available, and so these men, women, and children are condemned to premature death.
Nor is it merely the availability, or lack of availability, of medications that proves decisive. Despite the demonstrated success of new AIDS medications, studies of a kind Jerry has been conducting at Yale tell us that the key element in the course of treatment—in whether a person gets well and stays well—is not medication, but adherence: whether or not the infected person takes his or her medications as prescribed (no easy thing, given the quantities and daily regimen required for what, in virtually all instances, become lifetime medications with nasty, debilitating, and dangerous side effects).* Fewer than 50 percent do, and if one does not, the results are grave.
And the key element in whether or not one takes the medications is trust—whether or not the patient believes and trusts the doctor who prescribes the medications.
“Some of what I’ve come to understand,” Jerry explains, “is that when you look at every route of AIDS transmission—whether it is drugs, sexual behavior, bathhouses, needles, urbanization, migrations, or social disruption—you see that what explains the widespread transmission is that they all have something to do with how we live as human beings much more than they do with the biology of the organism.”
Phil explains that for people suffering from disabling neurological conditions—stroke, spinal cord injury, or brain injury—the best predictor of recovery and of a good rehabilitation outcome is whether or not the person has a strong family support system in place.
What Phil worried about most in my case, he says, was not the coronary artery disease or the surgery, but the fact that I had no wife or companion.
“I thought what happened to you was very frightening mostly because you were all alone and had only your children,” he says. “I mean, your kids were adults, but they didn’t have established families—and I thought: here you are, still in the position of being the primary caretaker for your kids and your brother and your mother—and all of a sudden you’re helpless and in the clutches of a life-threatening illness. I mean, you could have had a stroke on the table—not uncommon in heart surgery—and what would have happened then?”
Phil talks about a patient I met in Denver—a woman who had been totally disabled by a stroke. “You would have been like her, and wound up in a nursing home for sure, because if you were like her, your kids couldn’t take care of you,” he says. “Without a strong family system, who’s going to help you get better? Who’s going to manage your affairs? It’s not like one of your kids is a forty-year-old lawyer. So that was very difficult, and it just goes to show that we all live just one step away from a potentially lethal event. It’s why I usually advise my patients not to go too far away from their support system if they have anything major done. It’s why I voted with Jerry for you to go to Yale, where he could look after things, and not to Mass General, where nobody knew you.”
When I say that if I’d had a stroke or been otherwise debilitated, surely he would have come by regularly, flying in for visits, he laughs. “Sure,” he says. “I would have wiped the dribble from your face, and when I left I would have said, ‘Thank goodness it’s not me.’ That’s what people do. It’s human nature to empathize as best we can, and when we get home to say, ‘Thank God this didn’t happen to me.’”
What matters, then—whether we talk of AIDS and antiretroviral therapies, heart disease and bypass surgery, or brain injuries and rehabilitation therapies—is not only what we know or don’t know about the disease or about how to ameliorate its effects, but our ability to make what we know available to those in need of our knowledge and expertise.
“It’s a cruel world, you know, and before 1940, if you had a paralysis you often died because you would get a skin infection, or a urinary tract infection, and we had no way of treating these, so you died,” Phil says. “It was as simple as that.” What we can now do for infectious diseases, he adds, is “the true miracle of our age,” and though our gains in neurology have not been miraculous, we have made genuine progress—most specifically, through the advent of evacuation teams that start treating injuries right at the scene, as well as through new ways for treating brain swelling and new and better rehabilitation therapies in the treatment of trauma.
Like Phil, my other friends extol the virtues of our new medical knowledge and technologies, and the ways these have eased the burden of disease in their specialties. Arthur talks about how the discipline of psychology, especially with regard to depression, has been revolutionized by antidepressant medications. Jerry talks about new AIDS medications and new ways of employing them, and he tells me that in 1999, for the first time since the early eighties, when he worked in the Bronx during the outbreak of the AIDS epidemic, not a single one of his AIDS patients died. And Rich talks about how the treatment of heart disease, and especially of heart attacks, has been revolutionized by the advent of the coronary care unit, the monitors that detect potentially lethal heart rhythm disturbances, and the stent angioplasty and clot-buster drugs that dissolve clots that might otherwise kill people.
But my friends all add a cautionary note: that our new technologies promise good only if used wisely and judiciously—if, that is, we maintain a clear-eyed and humane view of the ways medicine remains both a science and an art, and if we remember to remind ourselves of how little we truly know.
What happened to me, Phil reminds me, happened the way it did—diagnosis and treatment—precisely because we do not know what causes atherosclerosis. Because we don’t, we had to crack open my chest after the disease was advanced and perform a procedure that involved a team of highly trained and high-priced professionals. (The cost, for my surgery and hospitalization, came to more than sixty thousand dollars.) In addition, bypasses, along with angioplasties, are often less than fully successful. According to the National Heart, Lung, and Blood Institute, 8 percent of individuals who had bypass surgery and 54 percent of those who had angioplasty needed another surgical procedure within five years. Nor, in two-thirds of all cases, does surgery or angioplasty provide any proven survival benefit over drugs.* What benefit is provided—mostly pain relief and exercise tolerance—comes at a price: a combined risk of death, nonfatal heart attack, stroke, and infection that adds up to 6 or 7 percent in the case of surgery and, in the case of angioplasties and angioplasties combined with stenting, a 20 to 40 percent probability of one or more repeat procedures (one of which may be surgery).
Moreover, a study published in the New England Journal of Medicine (February 2001) concludes that 42 percent of patients who have undergone bypass surgery show “a significant mental decline,” due most probably to brain damage caused by the surgery.* (In this study, subjects were considered to have declined mentally if test performances that could not be attributed to aging were at least 20 percent lower than their scores before surgery.) In addition, at least 5 percent of women and 3 percent of men die during bypass surgery.
When we understand what causes a disease, and the biological mechanism that enables it to do its damage, Phil explains, things become much simpler. Look at all the polio and TB wards and sanitariums that no longer exist, he says. And someday, if and when we know what causes atherosclerosis, he predicts, all these screenings, angioplasties, transplants, cardiac care units, and the rest will become things of the past. “Once we know these things—” Phil says, “—and this was the great triumph of the early part of the century, with respect to a host of infectious diseases—we have a much better shot at managing disease, and at doing so in much less complicated and less costly ways.”
In the meantime, we make do with what Lewis Thomas has termed “halfway technologies”—patch-up procedures that ameliorate or fix symptoms but neither cure disease nor address the causes of disease. More than a quarter century ago, Thomas defined these technologies as “the kinds of things that must be done after the fact, in efforts to compensate for the incapacitating effects of certain diseases whose course one is unable to do very much about.”* The outstanding examples of these technologies “in recent years,” he wrote, “are the transplantation of hearts, kidneys, livers, and other organs, and the equally spectacular inventions of artificial organs.”
“In the public mind,” Thomas explained, “this kind of technology has come to seem like the equivalent of high technologies of the physical sciences. The media tend to present each new procedure as though it represented a breakthrough and therapeutic triumph, instead of the makeshift that it really is.” But, he continued, “this level of technology is, by its nature, at the same time highly sophisticated and profoundly primitive. It is the kind of thing that one must continue to do until there is a genuine understanding of the mechanisms involved in disease.”
Thomas contrasted the complex and costly technologies for the management of both heart disease and cancer with the type of technology that is effective because “it comes as the result of a genuine understanding of disease mechanisms”—such as immunizations for childhood viral diseases and the use of antibiotics and chemotherapy for bacterial infections. And when such technologies become available, they are “relatively inexpensive, and relatively easy to deliver.”
Sometimes, when I review our conversations and reflect on the world the five of us came from, I wonder how much of our resistance to seeing technological procedures displace human interactions between doctor and patient derives from values present in the lower-middle-class, Brooklyn Jewish world in which we grew up. Is our concern for the well-being of others, especially for those dispossessed of the essentials of life, merely a consequence of having been nurtured by a generation of Jewish immigrants and first-generation Jewish Americans, and by those habits and values specific to our parents’ generation—by those socialist views and rabbinic teachings that formed and informed our parents’ lives and our coming of age?
But to speculate about how our intense work ethic, or our love of books and learning, or our capacity for self-discipline, frustration tolerance, and perseverance were nurtured in the Brooklyn of our childhood (the schoolyard’s Golden Rule: “If you keep making the right moves, eventually the shots fall”), or to consider how, where, and why we all seem to share, as if it were a genetic inheritance, an ambition and desire to leave the world a better place than we found it—all this need not diminish the value of what we may actually have done.
Rich often describes Jerry’s devotion to AIDS patients as “saintly,” and when I tell Phil this, he agrees. “When I think of Jerry I always think of the old Boston Blackie radio show,” he says. “Remember how it went? ‘Boston Blackie—friend to those who have no friends’ That was Jerry. He made his modus operandi the bringing of quality care to people on the fringes of society, to drug addicts and the homeless and the poor—to the people medicine left behind. To be a Harvard doctor in the sixties and to go into Dorchester and Roxbury the way Jerry did was not the usual thing. Harvard academia didn’t see the value of what they considered nonscientific medicine, or medicine that had a social basis and content. And when it came to AIDS, Jerry was a very brave man. He leapt right in with both feet, and made a real contribution.”
Phil and I talk about some of the specific contributions Jerry made—discovering, at a time when people wanted to ostracize and quarantine everyone with AIDS, that one could not transmit AIDS through casual contact but only through blood and genital secretions; persuading the Centers for Disease Control and Prevention that AIDS was transmitted not only by homosexual men but also by heterosexuals—and Phil also reminds me that there were surgeons back then who refused to operate on people with AIDS for fear of contracting the disease themselves. “If this is what you did every day in your life as a doctor, would you risk dying?” Phil asks. “But Jerry just leapt in.”
At the same time, while Phil sees Jerry as a true hero, he doesn’t see him as being more noble than anyone else. “Jerry does what he does because he doesn’t have a choice,” Phil says. “He couldn’t be a high-priced lawyer screwing people because that’s not who he is. He’s like Jane Goodall with the monkeys. She had to spend her life the way she did, and Jerry spends his life the way he does, as a doctor trying to help people other doctors don’t usually care about. It’s what he was made for so that’s what he does.”
Later, when I read Phil’s comments about Jane Goodall back to him, he laughs. “Did I really say that?” he asks.
Phil’s no-nonsense way of seeing things often serves as a useful corrective to my tendency not only to idealize others, but to make of my own life what I might want some other writer to make of it were I the hero in that writer’s book. I am only mildly surprised, then, when I review my journal entries for the periods before and after surgery, to find that I’ve done it again—that the story I’ve been telling others is less than fully consistent with what actually happened at the time.
In the story I’ve been giving out to others, until Rich exploded and told me he wanted me in a hospital as soon as possible, everything in my life was just fine. The proof? I was swimming a mile a day until just a few days before surgery, I had no traditional symptoms or risk factors, and I was more free from stress than I had been in years (my children were well launched, my writing career was thriving, I had no financial problems for the first time in ages), yet everyone, including my doctors—two of whom “missed” the diagnosis—was surprised to discover how severely advanced my heart disease was. Phil confirms this version of my story. “I remember that it was a very unusual event,” he says. “You were in great shape and you had no risk factors—so I couldn’t understand why you would have coronary disease.”
What Jerry recalls is my attitude before and after surgery. Since he too thought I had no significant risk factors or symptoms, Jerry was shocked when he discovered how advanced my coronary disease was. “How could this be real?” he remembers saying when Dr. Cabin showed him the results of the angiogram. “You were hanging by a thread,” he tells me. “I mean—imagine!—you were walking through the valley of the shadow—and it turned out to be much much more serious than we thought it would be. But the amazing thing about you was your positive attitude—that you were immediately accepting and trusting of the intervention and said, ‘Just do what you have to do.’ Often in this kind of situation the first response is denial. People say, ‘You must be talking about somebody else,’ or ‘Why did this happen to me?’ But you immediately said, ‘Aren’t I lucky this was caught in time and something could be done about it, so go ahead.’”
Jerry talks about the relaxed evening we had in his home the night before the angiogram, and he reminds me that we had done the same thing just two weeks before that, when I’d come down to Yale to give a talk for the medical school faculty in their series “Medicine and the Humanities.” He also remembers cautioning me about the fact that most people become depressed after surgery—especially heart surgery—something he had seen frequently following serious illnesses.
“But this didn’t happen either,” he says. “You never seemed depressed or anything but positive. At every point you kept on saying how grateful and fortunate you were, and I thought that was amazing.
The truth, though, is that I was scared shitless. Despite the face I showed to the world and to friends and family (no matter the troubles or disasters taking place at home, for those beyond our immediate families, we were all trained to put a sign in every window of our lives that said, “Business is Good”), and despite the seeming absence of symptoms and risk factors, I was, especially before the angiogram, worried, depressed, and frightened: worried that something was terribly the matter with me, frightened that I was going to die imminently, and depressed because I believed I was going to die alone.