Open Heart (27 page)

Add to this the fact that prevention—crucial to lessening the burden of chronic disease—is barely taught in medical schools and underfunded in both the private and public sector, and we see more clearly the magnitude of the problem, and the reasons for its tenacity and persistence.

“The resistance to prevention among decision makers in the private and public sectors has a long history,” Daniel Fox writes.
^*
Since the end of the nineteenth century, “experts and advocates in health affairs promised that increasing the supply of facilities, professionals, and research would lead first to more successful and available technology for diagnosis and treatment and then to better health for Americans. Preventive services that could be delivered by injections or in tablet form fulfilled this promise. Prevention that required people to change their behavior was, however, outside the conditions of the promise. The promise of better health through procedures administered by professionals was central to policy to support medical education, to define health insurance benefits, and to establish priorities for research.”

Despite the alarming situation that exists with respect to chronic conditions, “we still seem to believe,” Jerry comments, “that the goal should be to cure, the way it was with infectious diseases—so that anything less becomes a failure.

“But AIDS, a disease of long duration and considerable cost—a chronic infectious disease—assaults this belief,” he explains, “because it is all around us, and will be with us for the rest of human history, and because it creates an uncomfortable feeling of inadequacy and failure in physicians.

“AIDS forces us, especially if we're physicians, to confront our own vulnerability and inability to substantially alter the power and force of natural events. So that even though the goal of curing remains paramount, the parallel ethic of preventing disease, prolonging life, improving the quality of life, and alleviating suffering is more realistic,
and
more appropriate.

“Central to this ethic, of course, is compassion, and compassion for the sick doesn't just mean
feeling
for them—it means providing
competent medical care
, and I'm talking about the most comprehensive and technically superior care that's available.

“Personal compassion toward AIDS patients, especially by individual health-care workers, can only exist and be maintained within a framework of competence that exists within a system that provides both the necessary resources and an appropriate environment for such care. In this kind of setting, individual acts of compassion can flourish.” Jerry stops, shrugs. “So the question's always with us, you see: What does the world do in a time of plague?”

Sometimes, it seems, we are so beguiled by our new technologies, and by all the hype from drug companies and the popular media about them, that we come to believe about our technologies what we used to believe about infectious diseases—that every human ailment has a singular, specific cause and is therefore susceptible to a single and specific remedy.
^*
If a laboratory test shows we have disease A, condition B, or illness C, then a doctor—or computer—will, with such knowledge, automatically prescribe medication C or treatment D or procedure E, and all will be well.

But diseases themselves are biologically variable, and make their homes in each of us in variable ways. “It is the sheer interactive complexity and unpredictability of the behavior of living organisms that sets the limits of the medical sciences,” David Weatherall explains, “regardless of whether they involve highly sophisticated molecular technology or the simplest observational studies.”
^*

Although our new technologies can be marvelously helpful, like heart scans and brain scans, they are only as good as the doctor who makes use of them. The more diagnostic testing mechanisms we have, and the more sophisticated they become, the more the judgment and diagnostic skills of the doctor are needed. As Sherwin Nuland notes, “it is not information that leads to the best medical care, but judgment.”
^*

Under most recent managed-care guidelines, however (and managed care, now the dominant form of medical care in the United States, is itself variable—a generic term for a variety of approaches
to financing and delivering medical care), not only are doctors encouraged to limit the amount of time they spend with individual patients, but patients often see one doctor on one visit, another doctor on the next visit, and so on. More: in an increasingly mobile society, each time one of us changes jobs, or moves (according to the Census Bureau, nearly 45 million Americans move in any one year, and approximately 40 percent of these moves are to different counties and states), we usually change health plans and doctors.
^*

Thus, my friends lament, we frequently become strangers to our doctors and they become strangers to us, a condition profoundly inimical to the practice of medicine. The more this is so—the more we transfer from health plan to health plan (if we're insured and
have
a health plan; at this writing, approximately 41 million Americans lack health insurance, and the United States remains virtually the only industrialized nation without universal health care), and the more we transfer individual responsibility and accountability to machines—the less often and the less well can doctors make informed judgments that inspire trust, and that are worthy of trust.
^*
And without trust, the quality of medical care, and of our well-being, is dangerously compromised.

As my recovery proceeds, so that I do not even think of myself as being
in
recovery, I realize more and more just how lucky I have been, not only to have survived the blockages in my arteries, but to have had full access to friends whose thoughtfulness, knowledge, and judgment both saved me and sustained me. My talks with them, and the reading this stimulates, continue to persuade me of the validity of the old truism: that the secret of the care of the patient is in caring for the patient.

“Clinical research never produces definitive conclusions,” Richard Horton explains, “for the simple reason that it depends on human beings, maddeningly variable and contrary subjects.
^*
Although medical science is reported as a series of discontinuous events—a new gene for this, a fresh cure for that—in truth it is nothing more than a continuous many-sided conversation whose progress is marked not by the discovery of a single correct answer but by the refinement of precision around a tendency, a trend, a probability.”

Horton articulates what Rich said to me within a day or two of my surgery: “Advances in diagnosis and treatment depend on averaging the results from many thousands of people who take part in clinical trials. The paradoxical difficulty is that these averages, although valid statistically, tell us very little about what is likely to take place in a single person. Reading the findings of medical research and combining their deceptively exact numbers with the complexities of a patient's circumstances is more of an interpretative than an evidence-based process. The aim is to shave off sharp corners of uncertainty, not to search for a perfect sphere of indisputable truth that does not and never could exist.”

And there is this too: even if my friends and doctors had been unable to do anything to save my life, as would have been true a generation ago—or if I had been among the small percentage of those who do not survive bypass surgery, or the larger number who emerge from surgery with various disabilities—how do we calculate all those things my friends did—those things that we
cannot
measure? How do we calculate what they did, and continue to do—by their kindness, their caring, their love—to enhance the quality of my life while I am still living it?

In ordinary times we go to our doctors for complaints that usually resolve themselves without medical intervention. Sometimes we go to them for what we think are minor problems—a swollen gland following a cold; some intermittent shortness of breath—and discover the problems are not minor at all. Sometimes we go to them in emergencies, or for matters grave in the extreme. And when we go to them, as I did—or are taken to them—we put ourselves in their hands, literally
and
figuratively, hoping they will understand our problems, and have the knowledge and skill to ameliorate them.

But whenever we go to our doctors, we bring our selves—who we are, with all our vulnerabilities, strengths, and mysteries—and to the degree that our doctors pay attention primarily to the numbers our bodies generate, it seems, to that degree do we lose not merely a portion of our humanity, but the benefit of those skills, essential to diagnosis and treatment, that continue to lie at the heart of good and effective medical practice.

11

So Why Did I Become a Doctor?

T
HREE
DAYS AFTER
sixty-second birthday, I fly to Stavanger, Norway, to attend an international psychiatric conference, after which I travel with my hosts, Dr. Gerd-Ragna Bloch Thorsen—organizer of the conference and director of the local psychiatric hospital—and her husband Olav, a general practitioner, into regions of Norway that can be reached only by foot.

For several days, along with two other couples, friends of Gerd-Ragna and Olav, we make our way into the Ryfylke mountains, north of the Lysefjord, into a part of the world that is, I write in my journal, “outrageously beautiful—the most extraordinary landscape I have ever seen: every few meters, a new vista, new and remarkable beauty. Fog and sun—mystery and radiance—!” Although it is now the second week of June, the weather is cool, and we hike through mist and drizzle much of the time, up and down hills of rain-slick, moss-covered rock, through muddy streambeds, across open fields, along forest trails bordered by shrubs and trees of astonishing diversity, and through narrow gorges and valleys that open suddenly onto sunlit, golden meadows, or give rise to steep, cave-pocked mountains. By the time we stop for lunch on the first day, take off our backpacks, and eat—we sit on boulders that form a half-moon around a waterfall—I am, through four layers of clothing, drenched through with sweat.

We take shelter for the night in an unelectrified cabin, fish in a
nearby lake, watch wandering sheep graze in the distance, talk, read, and play cards by candlelight. Although we bring artifacts of civilization with us—cameras, watches, books, matches, canned food—the workaday world seems far away, and it feels wonderful to be bone-weary from the day's journey, to have sweat dry and cool on my body, to sit by candlelight, eating and sipping wine, laughing and exchanging stories.

I had visited with Gerd-Ragna and Olav two summers before, in June of 1998, when I was a guest speaker during Stavanger's annual psychiatric conference (called, refreshingly, banners heralding the event strung across the city's central square, “Schizophrenia Days”), at a time, eight months before surgery, when I had had no intimation that my heart's arteries were closing down. Gerd-Ragna now teases me about my “condition”—she claims we have gone at an uncharacteristically sluggish pace all day in deference to it—and when my companions inquire, I find myself telling them the story of what happened, then listening to them talk about illnesses and accidents they've survived.

We also trade stories about places we've traveled to in other years, and when I talk about my time in Alaska, what I recall first of all is the
openness
of the landscape—the absence of people and habitations in a place where slightly more than six hundred thousand people, most of whom dwell in and around the city of Anchorage, live in a territory more than double the size of Texas.

I describe flying in a single-engine plane north of the Arctic Circle, of circling in dense cloud for nearly an hour, then emerging to see a gorgeous expanse of land and water appear below: wide horizons and endless vistas—ocean, forests, inlets, streams, and fields that seem, in their sudden stillness and beauty, preternaturally pure and serene.

How, I recall wondering at the time, could a world that appears so lovely and peaceful contain
any
menace,
any
danger? And how, having had my life returned to me, could I ever be unhappy again—how ever again take even the meanest detail of life for granted? In that moment—I touch my chest with the palm of my hand, feel my heartbeat, feel heat rise through my clothing—the landscape below
seemed to correspond to a landscape within: to a sense that within me vast expanses of wondrous territory were being born.

In the semidarkness of a cabin far from home, remembering and talking about this moment, ordinary things—eating, talking, laughing; a spoon, the reflection of candlelight on a window, the palm of my hand—seem extraordinary. I see myself in Alaska—in Kotzebue, at midnight—leaving my hotel and walking along the beach. The sky is a pale, clear blue, nearly white at the distant horizon, and I cannot tell where water ends and sky begins. The sun is out as if at midday, and on the Arctic Ocean young people are swimming and water-skiing. Saved from darkness for a while, a month past the summer solstice, the world lies all before me, suffused in mystery and wonder, alive with possibility.

I sit and look out to sea, and think about how, only five months before, I was deep in anesthetic sleep, my heart—this three-quarter pound oblong of flesh—disconnected, drained, and worked on by human beings who mended it and then returned it to me. It is the fact that people actually held my heart in their hands—that it was physically
touched
, and that, in a prolonged moment, tenderness and technology joined to save my life—that now astonishes, and humbles.

Imagining my heart, like the tiniest of infants, being cupped in skilled hands, and wondering about the unknown ways this literal laying on of hands has wrought changes in me, I find myself feeling grateful for having survived—of course—but more grateful for having been ill: for having
had
heart disease, for having had my chest opened, for having been operated on. This, I think, is my true and great good fortune, for had my arteries not been severely occluded, and had my heart not been repaired, I might never have known how dear I was to my children and friends, and how lucky I was, in a life as precious as it is fragile, to know them.