Open Heart (7 page)

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?