Open Heart Page 5
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 mos
t 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 cautionar
y 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.