Open Heart

by Jay Neugeboren

  It would be helpful and good, for example, to think—and to act—more in terms of care than of cure, and to think long-range rather than short-term; to think more in terms of early intervention and prevention—of encouraging and expanding public health measures, and investing in basic research—than in terms of end-of-life patch-up technologies; to think in terms of implementing policies that encourage continuity of care, and doctor-patient relationships that are ongoing, so that we thereby encourage the trust essential to so much of good medical care; to think of balancing the often excess amount of screenings and testings (much of it inspired by the fear of malpractice suits) with the need to give doctors and patients more time with each other.

  And, for starters, Jerry and I agree, it would be helpful and good—essential—to enact some form of universal health care, because it is in all our interests that health care, like the services we receive from police departments and fire departments, be available to everyone and be distributed equitably.

  But to do such things, of course, we need to have a coherent approach to health care, and to be able to set viable priorities—to have what, virtually alone among industrialized nations, we do not have: a national health-care policy. How impose regulations, or even sensible guidelines, on a system that is strictly voluntary? How, for example, plan in any practical, long-range way for the enormous and ever-increasing numbers of people who, suffering from chronic conditions, will need the kind of care that is already in unacceptably short supply?

  “The demand for autonomy and choice, as well as for high-quality care,” Daniel Callahan explains, “represents values that can be scaled back considerably without loss in actual health.”* It is important, therefore, he submits, “to decide what we are after most: better health, greater choice, or some wonderful combination of both.”

  Callahan notes the obvious—that “we probably cannot have both in equal degrees,” without, in the name of the public good, being willing “to exempt some health care policies and decisions from the market ideology.” Because “whether we like modifying our basic values or not, it seems impossible to achieve equity and efficiency without doing so.”

  “The demand for priorities,” he points out, “arises when we try to live with both decent minimal care and limits to care. At that point we must decide what it is about health care that advances us most as a society and as individuals. We have bet that we could have it all. That bet is not paying off. There remains no reason, however, that we cannot have a great deal.”

  Valuing freedom of choice over constraints, and individual freedom over government regulation in the specific ways Americans do, we seem a long way from knowing how and when, if ever, we will be able, if in inevitably imperfect ways, to set reasonable and effective national health-care policies.

  The reasons are many and complex, the questions numerous, the answers various and debatable: Who will be empowered to deal with the difficult decisions that setting national health guidelines will entail? And who will empower, and watch over, those empowered? Who should get (enormously expensive) organ transplants or implanted defibrillators, for example, and who should pay for them, and how, and should there be age criteria, and how rigid or flexible should such policies be, and who will enact, monitor, and regulate them? Should we, as a nation, continue to invest heavily in so-called lifestyle technologies and in end-of-life technologies, or find ways, consistent with free enterprise (no small task) to redirect resources toward child and infant care, for example, or toward providing higher salaries and better training for health-care workers who tend to people with chronic diseases? Should we allow drug companies to advertise prescription drugs directly to consumers—and what about conflicts-of-interest between drug companies and doctors, insurance companies and hospitals? And just how, in the face of economic restraints, do we balance the claims of better health (for all? for some?) against the claims of individual choice, and are there practicable ways of arriving at good if imperfect combinations of the two? (If your own child, spouse, or parent is seriously ill, don’t you want to be able to obtain the very best care possible, and the costs—and fairness and equity for others in similar situations—be damned?) Do we have any obligation to curb the aggressive marketing practices of American tobacco companies abroad (for example, having pretty young women give out free cigarette samples) in a world where, according to the Centers for Disease Control and Prevention, tobacco will, within the next twenty years, cause more deaths in developing nations than AIDS, malaria, TB, automobile crashes, homicides, and suicides combined?* And how provide and pay for antiretrovirals for all those infected with HIV, here or elsewhere, in a world where greed is often rampant and poverty itself, as Jerry insists, is a disease?

  In short, that is, what do we do to make it more possible today than it was yesterday to bring about a situation where increasing numbers of people have access to doctors like my friends, and to the kind of care, and kindness, that they gave me, that they directed me to and monitored, and that I was fortunate enough to receive?

  The basics seem fairly clear: Listen to the patient. Make use of the marvelous technologies now available for virtually every disease and condition, but don’t be beguiled by them. Be humble before our ignorance of nature. Encourage any and all policies and programs that encourage and enable trust, and that provide for greater access for greater numbers of people to good health care.

  The paradox, though, is this: The more complex, useful, and abundant our technologies are, the more essential, in employing the technologies and in interpreting their information, a doctor’s judgment about each individual patient becomes. Yet the more a doctor knows, from reading, research, and clinical experience, the more, like the Socratic wise man Jerry and I learned about in our freshman courses at Columbia, he becomes aware of how little he knows. It is this humility, however—this ability to say “I don’t know”—that allows doctors to be open to those possibilities that make all the difference: in their minds and imaginations, in their researches, and in the particular cases before them.

  A hundred years ago, William Osler, reflecting on what he called “the uncertainties of medicine,” spoke of “this everlasting perhaps with which we have to preface so much connected with the practice of our art.”

  “Surely,” Sherwin Nuland comments, “many would say, things are different in the current era of molecular biology.* Paradoxically, the opposite is true. The remarkable advances of ultramodern biotechnology have brought with them complexities of such magnitude that medicine sometimes seems in danger of being overwhelmed by forces of increasing intricacy and incomprehension…What conclusions are to be drawn from a hard-to-interpret test of liver function? In what situation is it better to recommend angioplasty rather than coronary bypass? Which of three possible antibiotics is best for a particular resistant bacterium?”

  The problem—and, thus, the challenge—is how best to enable the education of knowledgeable and humane doctors, to provide the environments and conditions in which the judgment and skills of such doctors can thrive, and—no small order—to enable increasing access for others to these doctors. Clearly, to judge from my researches, and from conversations with friends and family—with doctors and patients—a managed-care system in a health-poor world, no matter its apparent or acknowledged inadequacies, will for many reasons, not least among them inertia and self-interest, tend to resist reform, change, and transformation.

  Yet change it will—and has—in response not only to market pressures and internal review and self-criticism, but to pressure from doctors, patients, and advocacy groups who represent doctors and patients. Managed care is a system that began with the promise of reducing the growth of health-care expenditures and initiating accountability from doctors and hospitals with regard to where those insured were cared for, what services were provided, and at what cost, and to do so through various strategies—gatekeeping, restoring the role of primary-care physicians, improving health maintenance and preventive services, reducing admin
istrative costs, providing a more organized structure for thoughtful peer review, instituting practice standards and incentives for achieving these standards, et cetera. As David Mechanic has noted, managed care represented “a shift from relatively invisible fee rationing to more obvious rationing of supply through either implicit processes (capitation) or explicit controls (utilization management).”

  But whatever managed care’s achievements, medically and/or economically, they have been eclipsed in the public mind, Mechanic notes, “by excessive profit seeking and marginally useful organizational strategies that challenge public trust and patient confidence.”*

  Managed care is not, however, some evil, monolithic beast, but merely the name we often give to those parts of the health-care system that we find—and that too often are!—lamentable, infuriating, and wanting, and that we perceive as originating in certain new modes of organization and practice that came into being in the late 1980s. Before that time, when what we know as fee-for-service prevailed, doctors and hospitals had few restrictions on how they conducted their activities—on what services and procedures they performed, on what referrals they made, on what medications they prescribed, or on what they charged.

  But managed care—dominated by large corporations in which people with little background in medicine make major decisions about medical care; claim greater accountability and responsibility while often being accountable and responsible, primarily, to shareholders; and encourage efficiency and reduced expenditures with incentives that reward doctors for withholding care (thus placing doctors’ and patients’ interests in direct conflict)—has simply become the term that designates a wide variety of health-care plans. It is a synonym for the system that, in its heterogeneity, now prevails and that provides medical care—good, bad, and mediocre—for most of us.

  Sitting in Jerry’s living room on a midwinter night, and talking about the kinds of things Jerry and I usually talk about, a familiar feeling rises in me—an optimism, doubtless naive, that says: As long as we have doctors like Jerry in the world, all will yet be well. We were boys together, and now we are men, I think, and then another thought, one that has been with me frequently since my surgery, also returns, and it does so in the form of a wish: that everyone should have friends and doctors like my four friends—that everyone should be able to count on friends and doctors they can trust more readily than themselves.

  But how to make this happen? We might begin, if only begin, it occurs to me, by thinking in terms of what my friends and I have been talking about—providing those contexts in which greater access to care, continuity of care, long-term care, preventive measures, and public health measures are encouraged and endowed. If, too, we restore the doctor-patient relationship to a central position in medical care, and if we avail ourselves of the marvelous technologies that exist while at the same time remaining skeptical of those technologies that are more expensive than they are curative (and that cause us to neglect more urgent health-care needs), then, I say to Jerry, we have a pretty good shot at making it happen.

  If you keep making the right moves, I suggest, eventually the shots go in, though when I repeat the old schoolyard saying, I note that eventually is the longest word in the sentence. The technologies and expertise are, blessedly, all around us—what we need, as with antiretroviral therapies, is the wherewithal that enables us to use them wisely and widely. What we need, as Jerry keeps reminding us, are the attitudes, leadership, and—above all—the will that can transform possibilities into probabilities.

  A recent study of neonatal intensive care units, a New England Journal of Medicine editorial points out, raises “disturbing issues regarding the nation’s unquestioning acceptance that more is always better with respect to the supply of specialist physicians and hospital technology.”* In this national study, researchers found that “regions in the highest quintile of supply had more than four times as many neonatologists and neonatal intensive care beds per 10,000 births as regions in the lowest quintile.” Yet this variation in resources had little relationship to the needs of the populations being served, the study discovered, and a greater supply of specialized neonatal services did not result in better outcomes for the infants (as measured by the risk of death within the first twenty-seven days of life).

  How explain the abundance of neonatalogists and neonatal care beds, the authors ask, and the fact that “the distribution of these resources bears so little relation to community health needs”?

  “One important explanation,” they bluntly suggest, “is money,” since “nenonatal intensive care units are profit-making centers for hospitals, commanding high payments from private and public insurance plans.” The number of specialists in the United States has tripled in the last forty years, they note, and expensive forms of technology have proliferated. “At least in the case of neonatology,” they conclude, “this uncontrolled growth has less to do with the true need of communities for effective clinical services rather than with the financial incentives promoting specialization” and is therefore “emblematic of how a market-driven health care system with inadequate public planning” can produce “too much of a good thing” and can come “at the expense of underinvestment in less glamorous primary care and public health services that avert poor outcomes” (italics added).

  Recent findings concerning the problematic value of mammograms, and of hormone replacement for women (I am writing this in July of 2002), make us realize, alas, that the passion for screening—for early detection and treatment of certain diseases—may, like the excess of neonatal care units, often be less than valuable. And what good is a treatment that alleviates one condition yet puts an individual at greater risk for another, more deadly condition? What good is it to know you have a disease for which nothing can be done—or, as with young children tested for the Huntington’s disease (HD) gene, what is gained for the child who learns that he or she will be afflicted with a late-onset disease that cannot be prevented (“who will be labeled as already ‘sick,’” George Annas notes, “and lose his or her right to decide whether to be tested for the H gene”)?*

  Listen to the patient—of course—but we shouldn’t forget that we, the patients, should also listen to those doctors who listen to us. Despite our ability to fix what was wrong with me (though we might not have been able to do so had I not, as Rich says, gone to high school with the right guys), my researches, my experience, and—most of all—my talks with my friends make me increasingly certain that in medicine we do best when we begin by understanding what they have taught me—that, as Osler wrote, “medicine is a science of uncertainty and an art of probability.”

  “Is radical mastectomy the best treatment for breast cancer?” Sherwin Nuland asks.* “Is drinking coffee associated with an increased risk of pancreatic malignancy? Should every ruptured spleen be removed? Is a low-fiber diet the best treatment for chronic diverticulitis? Is acid production by the stomach the key factor in peptic ulcer? Should every man, or nearly all men, with prostate cancer, have surgery? Are most cases of impotence psychosomatic? The answer to every one of these questions was once ‘Yes’ and is now ‘No.’”

  After dinner, at breakfast the next morning, and on the way to the New Haven train station (after we arrive at Grand Central Station, Sarah and Eli will head off to the Museum of Modern Art, and spend the day together), Jerry and I fill each other in on what our friends are doing. Isn’t it wonderful, he remarks, that in our early sixties—at an age we used to think of when we were growing up as really old: as an age when one retires and becomes less active—we are each setting out for new territory.

  Jerry is planning, for the first time since he started out as a public health doctor in Nigeria nearly forty years ago, to fulfill a dream deferred: to devote increasing amounts of time and energy to international work in the developing world.

  Rich, continuing to teach at the University of California at Irvine medical school and to do private consulting work in cardiology, has completed drafts of several new
books, drafts he sends to me for my comments—and he has even, his most recent venture, begun writing a novel: a thriller about a terrorist network that infiltrates our nation’s Department of Health.

  Phil, reversing the conventional pattern, has left his home in a Denver suburb and moved into the downtown area. (But what to do about his office? A possible solution, I suggest, is to donate it, intact, to the Smithsonian, so that centuries from now children can look in through a glass wall, the way we looked in at reconstructed rooms of colonial homes in the Brooklyn Museum when we were boys, and see what a typical doctor’s twentieth-century study was like.)

  Phil continues to work long hours as a practicing neurologist, and the idea of retirement is incomprehensible to him. “I think you should be a player,” he says. “As long as you’re alive and have most of your marbles and can make a contribution, you should try to be a player in the world. I don’t think I would be content just to walk around a golf course figuring out what to do next—where the big issue of the day is where to go for supper, or on your next vacation. I want to be a player, you know? To do more sculpting, to learn to sketch better, maybe to discover something—with respect to spinalcord injury or brain injury, or with MS—that would be helpful to people. I think it keeps you from becoming demented.”

  He laughs. “Not that you can’t get demented if you’re a player. But I think two things kill. One is isolation—what I worried about in your case, when you had the surgery. And the other is feeling that you’re of no use to anybody else in the world.

  “I mean, the idea of retirement where the entire day revolves around what you’re going to eat at your next meal is obscene. It’s a meaningless existence. So in terms of my own work, I’m more excited than I’ve ever been. I think about MS a lot, and about other diseases we don’t have answers for, and—as with Friedreich’s ataxia, where we know the recessive gene—I think about how, if we could just figure out how to get that gene transplanted into the cells and working, we could maybe cure an incurable disease.”