Open Heart

by Jay Neugeboren

  “I call it the Ponce de León thing,” Phil says.* “Everybody’s selling you the fountain of youth—eat this and don’t eat that and you’ll live forever. Take this medication, or exercise so much and so much every day, or have your doctor test you for this and perform that procedure and prescribe this form of therapy or that regimen and you’ll feel better than ever, get rid of all your bad feelings, and live forever. And if these things aren’t enough for you, there’s always cryogenics. It’s insane.”

  “The belief that disease can be conquered,” Gerald Grob comments, “reflects a fundamental conviction that all things are possible and that human beings have it within their power to control completely their own destiny.”*

  “The faith that disease is unnatural and can be conquered,” he continues, “rests on a fundamental misunderstanding of the biological world. If cancer is the enemy, then the enemy is ourselves. Malignant cells, after all, are hardly aliens who invade our bodies; they grow from our own normal cells.”

  “Inflated rhetorical claims to the contrary,” he insists, “the etiology of most of the diseases of our age—notably cardiovascular disease, cancer, diabetes, mental illnesses—still remains a mystery.”

  Then too, as my friends explain, not only do most diseases—including those that, in terms of mortality, predominate in our time (cancer and heart disease)—appear to have multiple causes (very few diseases are genetic in origin, and of those that are, most are quite rare, and even fewer are caused by single genes), but they are intimately bound up with the simple fact of aging: that we are mortal, we grow old, and we die.*

  Writing in the New England Journal of Medicine about ways publicity for medical research often encourages us to deny the reality of death and aging, Daniel Callahan, senior fellow at the Harvard Medical School and director of International Programs at the Hastings Center, a research institute that addresses ethical issues in health, medicine, and the environment, quotes William Haseltine, chairman and chief executive officer of Human Genome Sciences.* “Death,” Haseltine has proclaimed, “is a series of preventable diseases.”

  “The tacit message of the research agenda, is that if death itself cannot be eliminated,” Callahan comments, “then at least all the diseases that cause death can be done away with.

  “From this perspective,” he continues, “the researcher is like a sharpshooter who will pick off the enemy one by one: cancer, then heart disease, then diabetes, then AIDS, then Alzheimer’s disease, and so on.”

  The “thrust of the research imperative against death is to turn death itself into a contingent, accidental event,” Callahan submits, and one result of this way of thinking is that it “promotes the idea among the public and physicians that death represents a failure of medicine.”

  “Since we are a self-replacing entity,” William Haseltine informs the New York Times, “and do so reasonably well for many decades, there is no reason we can’t go on forever.”* He explains: “The fundamental property of DNA is its immortality. The problem is to connect that immortality with human immortality and, for the first time, we see how that may be possible.”

  When Phil and I discuss my mother, who has been diagnosed with Alzheimer’s disease and has been in a nursing home since 1992 (by which time she no longer knew who I was; for the last four or five years—I am writing this in the summer of 2002, shortly before her ninety-first birthday—she has not recognized even her regular nurses), Phil shakes his head.

  “Sometimes I don’t understand why Alzheimer’s is such a big deal,” he says. “As we get older, lots of our systems begin to wear down, and that seems natural to me. In the old days, see, when her memory got bad and she couldn’t take care of herself, Aunt Edith would live with one of her children or a brother or sister, and when people got together she would usually sit quietly by herself, and if anybody asked about her, the family would say, ‘Oh that’s Tante Edith—she doesn’t remember things so well anymore, but she still bakes great strudel.’

  “I mean, why are all these young people jogging and working out on treadmills and in health clubs all the time? Why is everyone on these diets all the time? Why do old men take up with young things, and women get boob-lifts and face-lifts? It’s the Ponce de León thing if you ask me—thinking we can cheat the angel of death and stay young forever.

  “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

  ALTHOUGH 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.