Open Heart (16 page)

“And the drug companies, with all their power, they take advantage. Sure. That's the Willie Sutton thing. When he was asked why he robbed banks, he answered, ‘Because that's where the money is.' It's the same with medicine—it goes where the money is. And these days the money's in Prozac and Lipitor and Viagra. Did you know that nearly a third of all stents fail, and that new studies are telling us that all the chemotherapy we gave for cancer, with the enormous suffering it produced, probably didn't make any difference in how long people lived? And as for all those cholesterol meds—for basically healthy guys like us, it's a crock. What do we need to take that crap for, without any proof that it makes a difference, yet knowing for certain that somewhere down the road, as with most meds taken long-term, there are going to be unforeseen, nasty side effects? What's wrong with growing old and dying is the question I ask.”

To which I reply: Believing what you do, and dealing on a daily basis with people who have migraines and headaches of unknown origin, who have suffered severe trauma and/or irreversible brain damage, have had strokes, and have been struck with fatal, debilitating diseases—why do you do it, and, as I've seen through the years when I've been with you, how do you maintain such an optimistic, hopeful attitude? What motivates you day after day?

“Okay,” Phil says. “I see it this way. In my specialty I'm always dealing with people who are sick. They're not
cured
, because if they
were, they wouldn't be in my office or at the hospital. That's the given. But the longer I do it, the more I know and the more I can be useful to people. Why be a doctor? Because you make a decent living, you satisfy yourself, and you do good in the world. That's the beauty of it. Hopefully, you're helping people—and we do help people much more than when I started out, when we didn't know that a lot of what we did was harmful. The things we can do now for people are truly marvelous—but we're often constrained, mostly by the insurance companies and medical groups that want us to spend less and less time with our patients, and to get them out of the hospital as quickly as possible.

“I want my patients to go home—if they have a home to go to—as soon as possible too, but I wind up spending more and more of my time fighting with insurance companies, especially for how much care my patients need
after
they leave. I mean, look at you: if you'd had a stroke during surgery and were incapacitated, who would have paid for people to be with you in ways essential to your day-to-day life—to your will to live?

“But you're always learning, and that's what I love—I wake up each morning knowing there are going to be new challenges, and new things to learn, and that I can be useful to other human beings.” Phil shrugs, says again what he has said before: “For me, that's the beauty of it.”

While my other friends also talk about the beauty of a life in which they are constantly learning new things, and while they talk about the struggles and rewards they experience in trying to be useful to others, they also, like Phil, lament the devaluation of the doctor-patient relationship. They do so, not because they are nostalgic for some idealized and illusory golden era when family doctors with warm bedside manners made house calls and had their offices in their homes (as most of the doctors I knew did when I was growing up in Brooklyn, their wives often serving as their nurses or receptionists), but for decidedly
practical
reasons: because it is only by carefully listening to and examining a patient, by putting a patient's symptoms and concerns into the larger context of the patient's individuality and history, and by considering the individual patient in the context of their
own
knowledge and clinical experience, that
they believe they have a good shot at an accurate diagnosis and a beneficial treatment plan.

Because Rich listened carefully to me over a period of time—because he
knew
me—he was, even though three thousand miles away, better able to gauge the exact nature and true gravity of my condition, and thus to urge me into treatment at once (and then, along with Jerry, to persist in choosing and getting the best possible care for me), than were the doctors who actually saw me and examined me in Northampton.

“But they weren't seeing
you,”
Rich says. “Instead of seeing you and listening to you—and hearing what you said: the nature of your pain, its precise location, its comings and goings, its progress over time—they ran more tests. And tests have an aura of scientific certainty—especially if they come out of a computer, right? Oh there's nothing ‘subjective' there!

“But they weren't seeing
you
, my friend,” he says again. “And the more our technologies evolve, and the more we rely on them—and they can be wonderfully useful, let me assure you—the more we're in danger of not paying attention to the human being in front of us. So that if we think the machine knows more than we do—or rather, if we begin to think we can never know as much as the machine does—if we stop trusting those instincts and that knowledge based upon a lifetime of study and of seeing patients—then we are in real trouble.”

7

Listen to the Patient

A
LTHOUGH
MY
FRIENDS
CHERISH
the new diagnostic tools, medications, and technologies that enable them to be more effective doctors—“Whatever relieves symptoms and promises alleviation of pain and suffering is fine by me,” Phil says—they all continue to direct my attention to the fact that most of the biotechnological innovations we spend so much money on, and that the media glorify, are not what has made and will continue to make the greatest difference in the health and well-being of most human beings.

When I ask Jerry, for example, who has witnessed advances in the ability to treat patients with AIDS considered impossible a few years ago, what he would put at the top of his medical agenda were he in a position to set priorities, his answer is simple.

“Clean water,” he says. And not only in the so-called undeveloped world, but in those regions of developed nations, and our own country, where clean water, along with other essential public health measures, is lacking; where medications are either not available or so expensive as to be beyond the means of those who need them; where pathogens are fast becoming resistant to available medications (antibiotics especially); where diseases such as malaria, cholera, and tuberculosis are returning; where adequate sewage and sanitation are wanting; and where infant and child mortality remains high because there are not enough doctors or other caregivers to
tend to the people in need and to educate them in ways that might prevent diseases that are eminently preventable. (According to figures from the U.S. Department of Health and Human Services for 2000, the United States ranks twenty-sixth in the world in infant mortality, with an average of 7.3 infant deaths for every thousand live births.
^*
)

Jerry and I have talked often through the years about the presence in our immediate families of individuals who have suffered from mental illness, and of our sense—confirmed by the years—that what often matters most in this area of illness, as with AIDS, is care and not cure. Although the kind of care that often matters most in the lives of people afflicted with mental illness—the relationship they develop on a long-term basis with a professional; the ways they learn to live
with
their condition; the ways they learn to become alert to early warning signs of impending crises; and the ways they learn to manage crises when crises arrive—may often seem too lowtech to be “scientific,” these ongoing human activities and interactions—talk, companionship, education—are what create trust, and thereby make
all
the difference.

“In my work,” Arthur says, reiterating with respect to psychological problems what Jerry and I have been saying about the treatment of AIDS and mental illness, “the key ingredient
is
trust, and I have been most useful to people only when we have been able to meet and talk over extended periods of time without the threat of having our sessions cut off, or cut down.”

Like my physician friends, Arthur specifies the ways in which he is of tangible help to his patients—whether with ostensibly somatic disorders such as depression and obsessive-compulsive disorder, or with those problems of life, marital, sexual, or vocational, that though not commonly designated as clinical entities, still, as with the majority of conditions people go to doctors for, affect a person's ability to function in this world, and surely affect a person's susceptibility to other debilitating conditions, and to disease.

“Essentially, I'm a databank, the same way an M.D. is,” Arthur says. “There are certain predictable things that a person who has dealt with human beings knows just from seeing them many, many, many times. The medical equivalent, I guess, is a cold and a sore
throat, and the doctor says it's a viral infection and it will go away. He knows it because he's seen it many, many times.

“I'm a databank on how things tend to work out based on seeing lots of similar stories. Because if a therapist can do anything, it's to help people see the world as it truly is. A woman gets married at seventeen and has a child at eighteen and was a promiscuous adolescent, and now she's thirty-one and she's interested in going to college. She's with a blue-collar guy who drinks too much, and their connection is lousy, and she says, ‘Is this my life?' Now one of the things I know is ‘Yes—for sure this is your life for the next five to ten years. However, if you begin here, and you find your way, by the time you're thirty-seven, say, to a college degree, and by thirty-eight or thirty-nine, to a way to earn money, you will then have a choice as to whether you want to keep your package intact. But the key is not to think you must do something or
can
do something by thirty-one-and-a-half. Because if you do, you'll drive yourself crazy.'

“I can tell you how that woman's marriage is going to go, and how that person will develop. That's like your mother made ten thousand chickens so she knows how long to keep a chicken in the oven. I mean, these are the things
Bubbie—
our grandmothers—would have told us before there were shrinks.

“A woman comes to me and her boyfriend can't make love to her because he can't get an erection. I know that the worst thing for him is for her to say, ‘I'll do this to help you get an erection—I'll read this book, try this, try that,' and it will drive him crazy. What I'll say to this woman is, ‘Let him pleasure
you
and forget about it and not think about himself.' Now that's empirical stuff that comes from just seeing a lot of guys who can't get erections, and in time this marriage may not be saddled with sexual problems.

“Psychiatry comes out of the medical model—it's a stepchild in medicine's house, right?—and the medical model comes down to: Neugie has a sore throat, gets a strep test, takes his medicine. But a monkey could give you an antibiotic. In my field it doesn't work that way because it depends on which monkey for which patient, and whether it's an antibiotic or whether it's a laying on of hands. Because there will always be a certain percentage of problems that cannot be handled by hard science or by medications—psychiatry is
not, for example, generally efficient or effective with addictions: smoking, gambling, alcohol—and there will always be a place for the judgment, instinct, and creativity that make this an essentially
humanistic
enterprise. Because in the end, you see, despite all I know—all the data I've accumulated—I'm still not sure of much more than I'm sure of.”

I say that our three physician friends have said the same thing—that despite their expertise, much of the effectiveness of their work is essentially humanistic, and is based on trust; that a lot of what we think of as “science” in medicine is hardly scientific; and that the practice of good medicine is based on the very elements that Arthur values in the practice of psychotherapy: judgment, instinct, listening, and clinical experience—diagnostic and therapeutic skills that are not always teachable.

I remind Arthur that, in my own case, two experienced doctors failed to get the diagnosis of heart disease right, and I remind him of what Rich keeps saying—that though we could fix what was wrong with me once we found it, and though we know a good deal about heart disease and have some viable theories on what causes it and can prevent it, the root causes of heart attacks—the accumulation of abnormalities in the walls of blood vessels, and the rupture of atherosclerotic plaque—still remain largely unknown to us.

A large proportion of the work our friends do in medicine, like the work Arthur does in psychotherapy, I suggest, has to do with long-term management and care of conditions (brain trauma, stroke, diabetes, AIDS, migraine) that depend at least as much on the interaction of doctor and patient—on biology
and
behavior—as they do on machines and medications.

Although medications have been of enormous help in enabling people afflicted with mental illness to get on with their lives—to reduce their sufferings and confusion and enable them to survive, recover, and move beyond recovery—medications, for all their efficacy, are only one element in what usually proves decisive. And while most of the several hundred individuals I have met who have recovered from years of madness and institutionalization are grateful for medications (especially new “atypical” antipsychotic medications), they all, in various ways, tell me the same thing: that though
you can ameliorate symptoms with a pill—and thank God that you can—you cannot reconstruct a life with a pill.

For that, they explain, you need people working with people, since, for individuals living long-term with those conditions we designate as chronic—whether schizophrenia, multiple sclerosis, diabetes, AIDS, heart disease, or various forms of cancer—it is precisely the long-term nature of the condition that makes attention to long-term care imperative.