The Prepared Heart
LATE IN THE AFTERNOON of December 26, 2001, my son Eli and I meet at Grand Central Station and take a train north to New Haven in order to spend an evening with Jerry and his family. Jerry, who has just returned from a four-month stay in South Africa, picks us up at the New Haven station.
My journal entry the next morning begins:
December 27, 2001
wonderful reunion with Jerry Friedland! He looks marvelous, loves to hug—what an earth mother of a guy! sweeping wavy silver hair, beard, gorgeous smile—so happy to see me and Eli, and talks almost non-stop re his time in South Africa. Home for 10 days, and figures he has, still, 20% retention of the experience, hard to return, esp to the stuff at Yale—hates the administrative stuff, and (he sez) is not good at it. but the South Africa experience: transformative. (Phil to me, earlier in day: this is what he will do for the last third of his life.)
In the car, Jerry talks about how sophisticated and “Western” much of South Africa is, and he reminds us that the first heart transplant was performed there by Christiaan Barnard (who was Dr. Lillehai’s surgical assistant at the University of Minneapolis Medical School in the late 1950s). Still, most blacks are poor, most whites are rich, and South Africa also has the greatest gaps he has ever seen between haves and have-nots. “If you could make New York City ninety percent Harlem, and ten percent Upper East Side,” he says, “you would have the picture.”
Violence in South Africa is rampant; a recent incarnation involves the widespread raping of young girls, often nine and ten years old, largely a result, Jerry explains, of the myth that having sexual relations with a virgin will lend one immunity from AIDS. Most white people have taken to hiring their own private security forces, so that even the police force in Durban, where Jerry and Gail were living (Gail stayed for two of the four months), employed a security firm to protect them.
Jerry’s daughters, Elisabeth (recently engaged to be married) and Sarah (on semester break from a study-abroad program in Cuba), are at home, and in addition to me and Eli, there are five other guests—Brigette and her four children, ages three to ten. Brigette, Jerry and Gail’s babysitter when they lived in Boston, now lives with her husband and children in Brooklyn, a few blocks from Erasmus. “Does the world go round?” Jerry asks.
Dinner is festive—lots of good food, good wine, good talk, and laughter—and during dinner Jerry is gently ebullient and glowingly optimistic—happier and more energized than he has been in years. He talks with enthusiasm about the projects he has begun in South Africa (“I am a guest there,” he says, “and I want to lend my expertise. It is their country, their AIDS problem, and my hope is to be a catalyst—to be able to help them help themselves”), and says he continues to be guided by the saying he took to heart during his previous visit—that the best time to plant a tree is twenty years ago, but that the second best time to plant a tree is now.
The rates of infection are staggering, he tells us, but what he also became aware of soon after his arrival was that a very high percentage of the nursing and hospital staffs are themselves infected, and so he has been working to develop a program in which the first people to be treated when antiretrovirals become available will be hospital staff members. Because the government refuses to acknowledge HIV as the cause of AIDS, and will not pay for antiretrovirals, the program will have to be administered through the private sector, but Jerry has already convinced one hospital to start such a program. He is confident it will do well—“the antiretrovirals work!” he exclaims—and his hope is that success in this hospital will encourage others to initiate similar programs.
“It’s estimated that 25% of nursing students and 10–15% of medical students are HIV infected. Can you imagine?” he had written me in early October. “But no encouragement for testing and no antiretrovirals.”
In that same letter he wrote about another project he hoped to initiate: integrating HIV and TB prevention and treatment. “The HIV infection rate is 50% among hospital admissions,” he wrote.
There’s a 25% in-hospital mortality rate and TB is the most common admitting diagnosis and cause of death among those with HIV. There’s minimal connection between the TB programs and the rest of health care and the need to integrate HIV and TB treatment and prevention is so clear, but not done. My TB project to attempt to do this is gathering momentum and hopefully will get off the ground before I leave. I have some colleagues interested in working with me on it and there is enthusiasm for the project but the wheels grind slowly.
I ask about the HIV/TB project and he says that it too is off the ground, and going well. In addition, believing that the primary cause of HIV infection is unsafe sex (a subject not talked about openly), and that the cause of unsafe sex is usually alcohol or drugs (as happens everywhere else, people get high and don’t take precautions), he has initiated several programs in education and prevention. He has been flying to various parts of the KwaZuluNatal province with the Red Cross and other doctors to get these programs started and, also a first for the province, to give seminars on HIV to local health professionals.
“I talk about the prevention and management of opportunistic infections, the construction of multidisciplinary comprehensive programs, and antiretrovirals,” he explained in another letter, “with the hope and expectation that at some time in the not too distant future, they will have them available.”
The overall situation, however, remains grim.
“It’s 7 AM, and Gail and I are home this morning of Yom Kippur,” he wrote two weeks after his arrival. “My work is going too slowly and I am becoming impatient—but will stay focused and do the best I can. I think things are now getting on track. New figures here estimate that over 4.7 million South Africans are now infected (total population 43 million)—the equivalent of at least 40 million Americans infected in the USA. Most will die.”
Nevertheless, he talks enthusiastically about the possibility of progress in the new South Africa, and uses the same words now that he used when writing to me. “There is,” he says, “both sadness and amazing hopefulness here.”
“The thrill of defeating apartheid has passed and the huge and mundane and seemingly intractable problems left in its wake now must be dealt with—” he wrote on Yom Kippur—
residual economic inequalities that make the US look like a socialist utopia, racial and religious divides, the boundaries of which are sometimes crystal clear and sometimes so subtle that we need to have them pointed out and translated to us, a fearful sense of danger—violent crime against property and person so that much of life goes on beneath walls and behind fences (how can there be safety with such inequalities?). And now—AIDS. Yet, there is a determination as well to try to make this very diverse and disparate country whole.
Given the scale of the problems, he says, one cannot think globally. For his part, he hopes to return to South Africa soon (in early January, he will fly there for a week), and he plans to spend at least three months of every year there. “It’s really simple, Neugie,” he says quietly. “I could not just watch. I had to go there. I had to do something—to contribute.”
After dinner, and after we have cleaned up the dining room and kitchen, Jerry and I sit in the living room, just the two of us, and Jerry says that if he remembers correctly, this is the first time Eli has stayed over since I was operated on three years ago.
I say that Eli mentioned the same thing during our train ride. We talk about Eli and Sarah, who are good friends, and who, from the time they were young children, clearly adored each other, and we joke, as we have before, about how, were we living in a shtetl in the Old Country, we would already have had them promised to each other. We talk about Jerry’s sister Rita, afflicted with Alzheimer’s disease, who continues to deteriorate, and about my brother Robert, who continues to make gains.
Robert has now been out of the state mental hospital for nearly two and a half years—the longest stretch since his first hospitalization forty years ago. He has a life, I say, and he is not locked up: he gets around the city on his own, he goes out of town on excursions, he attends classes (horticulture, photography, poetry), he works part-time, he has friends, and we see each other regularly.
Jerry asks how the book is coming along, and I say that it appears to be in its final descent, and that what I’ve been learning these past several years about my friends, and about medicine, has been both inspiring and sobering.
Learning more about Jerry’s work in Boston, the Bronx, New Haven, and now in South Africa, for example, has brought home something we knew before, but with more urgency—that the great problem in health care, as he contends, is access to health care, and that the first priority is finding ways to make access available to all. The gap in access to basic and competent care between the haves and have-nots remains shamefully wide, even in our own nation, while in the world beyond the United States, the availability and accessibility of even minimally competent medical care are often absent.
Jerry says he does not want to diminish the horror of what happened on 9/11 (in the weeks following the World Trade Center tragedy he wrote me that he and Gail almost returned, their grief and concern were so great)—still, given his work, it is hard not to contrast the response to the deaths of some three thousand people in New York with the response to the millions infected and dying from AIDS around the world. We know that in South Africa alone, five to seven million people will die within the next decade—and that an estimated twenty-five million people in sub-Saharan Africa are infected with HIV, about three million of whom will die annually. We have the means to treat and save most of these people, yet the will to do so is frail and lacking in the extreme. (“I’ve been musing about how we have such difficulty responding to slow crises,” Jerry wrote two weeks after 9/11, “and so little to sudden catastrophes. Do you think it’s in our genes?”)
We know how to cure a case of TB for fifteen dollars, yet we also know that many poor countries cannot afford even that amount for people with TB.* We know how to administer childhood vaccines, a blessedly inexpensive measure (twenty-six cents for a vaccination against measles) that would save three million lives a year, yet in many poor nations vaccine coverage is rapidly falling. In the world’s sixty poorest nations, the annual average health spending per year is thirteen dollars. In the United States the figure is $4,500.
Nearly eleven million children, according to the United Nations and the World Health Organization, die each year of preventable diseases, eight million of them babies, half of whom die in the first month of life. The causes of death are mainly diarrhea, malaria, measles, pneumonia, HIV/AIDS, and malnutrition, and the major cause of these diseases is poverty—lack of access to proper food, water, and sanitation.
The response of our own nation to the worldwide situation, we agree, has been disgraceful.* Of the twenty top industrialized nations, the United States devotes the smallest percentage of its gross national product toward efforts to control international epidemics. When the United Nations launched the Global Fund for AIDS, Tuberculosis, and Malaria, for example, and the secretary general proposed that between seven and ten billion dollars per year would be needed, our government promised only five hundred million dollars, this sum to be spread over three years, and, more niggardly still, to be taken largely from funds already designated for existing international health programs, including those for maternal and child health in developing countries.*
In addition, because most pharmaceutical research is done by drug companies, and because they have little incentive to produce medicines for people who cannot pay for them, the illnesses that constitute 90 percent of the burden of global disease get only 10 percent of research money.* Moreover, only a small percentage of pharmaceutical research money is spent on new medications for already existing, newly emerging, or reemerging diseases. The rarer a particular disease, that is, or the poorer the group that has it, the less chance—tough luck, right?—a drug company will develop medications to ameliorate its effects.
Mostly, I say, I’ve stopped arguing with people about the necessity and responsibility to do what we can, at home and abroad, for those without adequate medical care. One either believes one is, in this, one’s brother’s keeper—that we are obligated to see that as many people as possible receive at least minimally adequate health care—or one does not. How persuade another of this view if that person believes it is his or her inalienable right to be a free agent acting in a free market where whoever has enough money gets the best possible care, and the hell with everyone else?
As George J. Annas, chairman of the Health Law Department at the Boston University School of Public Health, has observed, because Americans place a high value on liberty and autonomy, especially as these inform market values, they feel they always have a choice, and “choice rhetoric has assumed such prominence in public discourse that merely labeling something as a ‘choice’ has a tendency to arrest conversation and prevent more than superficial analysis of the nature of the choice in question.”*
If you “couple the power of choice with the language of rights,” Annas adds, “the combined force is all but irresistible.” But “market language,” he continues, “with its emphasis on choice, tends to marginalize the sick and treat the practice of medicine as just another occupation, and medical care itself as just another commodity, like breakfast cereal.”
The notion that choice is always good and government interference with individual choice always bad is, Annas explains, “socially destructive and leads to a law of the jungle with those in power feeding off those for whom choice is always an illusion.”
Whatever our beliefs about “market values,” or about which system or systems of health care would be most humane and effective, what seems clear, as Annas states, is that “the use of choice as an incantation prevents us from looking more deeply into the causes of real problems, and therefore from trying to solve them.”
In his book Some Choice, he elaborates on this view of “choice” with reference to a wide range of medical, legal, and ethical issues, and, as with the common instance of teenage sex and pregnancy, he makes the obvious and salient point: “Choice and coercion language simply serves to stop discussion of the much deeper problem of teenage pregnancy and sex, instead of providing an opportunity for deeper reflection and social commitment to try to solve it.”*
But being generous toward others—or, at the least, when considering one’s own health needs, taking into account the basic needs of people and communities beyond our individual selves, families, and nation—while seeming a good thing in itself, would, with respect to health care—like honesty?—also seem to be the best policy. As the AIDS epidemic has shown, all of us are in danger if, in the global village we now inhabit, we deny the ways in which what happens to a human being in Durban—and to a microbe that infects someone there—has an effect on a human beings in New York or Northampton, Tokyo or Guilford.
The success of bypass surgery, for example—of all surgery—is dependent upon our ability to prevent infection. But what happens when antibiotics are so abused and overused that they bring into being a host of pathogens that prove antibiotic-resistant and make us more vulnerable to infection? What happens when medical teams have the knowledge and technology to transplant kidneys, eyes, hands, livers, and hearts, but are prevented from doing so because the risks of lethal infection have once again, as in the nineteenth century (when surgeons did not wash their hands), become overwhelming?
Like my friends, I am prepared to put forth specific policy suggestions with respect to a wide range of issues and problems—cholesterol and PSA screening, international vaccination programs, AIDS education programs, the education of medical students, the integration in medical training of public health with clinical care, the regulation of antibiotic use, the financing of care for people with chronic, disabling illnesses, et cetera.
Still, I say to Jerry, our conversations and my researches persuade me that what is more important than new policies—though these are always welcome, and let’s not hesitate to advocate for programs we believe will make real and meaningful differences—are the attitudes and assumptions that underlie and drive policy, and that therefore determine how resources are allocated.
When it comes to attitudes and assumptions, however, much of what I’ve been learning hardly seems new, or news. What, through the years, Jerry and I have believed would be helpful and necessary with respect to the prevention, diagnosis, and treatment of people with AIDS and with mental illness would also seem to apply to most diseases, and to most matters medical.
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 administrative 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.”
Arthur has sold his two-bedroom apartment in New York and moved into a condominium apartment outside Princeton, New Jersey, one built on land that was formerly an arboretum. He has also bought a smaller, one-bedroom apartment in New York City. He has given up his private practice completely (“If I survived Vietnam,” he says, “I can survive retirement”), and he and his wife Paulette, who has retired from her law firm, intend to divide their time between the Princeton area—they are already enrolled in courses at the university there—and New York City.
Arthur continues to provide therapy and consultation for former patients—and, several hours a day, for family and friends by the dozens—and he also now puts in one day a week at Gilda’s Club in Manhattan, where he works with individuals diagnosed with cancer, and with those close to them. In the wake of 9/11, and given his extensive experience with trauma victims and people suffering from post-traumatic stress disorders, he has offered his services to various organizations in and around New York City, including the police and the Red Cross.
But he is not rushing into his new life. “If people make a quick change or transition in situations like this, they usually revert to what’s familiar,” he says on the day movers come to take away his office furniture (he laughs when he tells me that their next stop, after his office, is Woody Allen’s apartment). “That’s why, if somebody is dumped in a relationship, the first person they usually try to connect with is a previous boyfriend or girlfriend—they want to connect with somebody who had once accepted them.
“But I’d rather stumble and bumble for a while before I move into a new life,” he explains. “I want to do something new, something different. I’ve been talking with a lot of people—in the police department, at the UN, in Princeton, in different charities—some people are urging me to write a book—but I’m in no rush.
“What I’d like to do, you see, is not be so frightened of the unknown. And most of the world is unknown to me, from astronomy to exotic travel, and I’ve never poked around in them and if I don’t poke around now I’ll die without having done so. So I’m interested in bio-ethics, for example, and, when I fantasize, in contributing to dialogue in and around the operation of a media enterprise—TV, newspapers—but I don’t know if I’m going to be strong enough to do it—to process the world in new ways, to have the life I have while generating a new and different life for myself.
“I’ve gone through life seeing most things through psychological eyes and in terms of interpersonal relationships, and I don’t want to see the world this way for the rest of my life—through a single prism. Life’s just too various and interesting.”
In June 2001, I left my position at the University of Massachusetts, rented my Northampton house to a family with two children, and moved back to New York City, where I now live and write full-time.
Shortly before we head upstairs for sleep, Jerry and I talk again about the time before and after my surgery, and he asks if he ever told me about how my children reacted when I came out of the operating room.
I say that he didn’t.
“Well, I brought them to the recovery room,” Jerry says, “and they asked if they could see you, so I think I pulled a little string—I don’t remember exactly—but we got permission to go in and see you. Apparently, however, Aaron is very queazy about these things.”
I say that ever since he was a small child, Aaron has had a needle phobia—that he has fainted several times in doctors’ offices when he had to receive injections, and that he even fainted once when, for a routine test, a nurse merely pricked his finger to get a few drops of blood.
“Well, I didn’t know that,” Jerry says, “but he described the same thing, and it wasn’t clear whether he’d be able to do it or not, so I went in and saw you first, and you were completely out of it. But you looked clean and nice. Still, you had tubes coming out here and there, and drains, and this and that.
“Actually, you looked like hell,” he says, “but very clean— like someone in a casket made to look nice—and quite peaceful, because you were unconscious. So I came out and said, ‘You know, I’m not sure you’re going to be able to do this, Aaron, because your Dad is fine, but he doesn’t look so great. It’s very high-tech stuff, and he’s attached to all these things,’ but Aaron said, ‘I want to go.’
“So the four of us—actually five, with Seth—all walked in and just stood around your bed, and everybody looked at Dad, and Aaron was a little pale, but he toughed it out. And I think they were reassured because although you were tied into everything like a space cadet, you looked nice and clean, if a little bit dead, and I think they were relieved to see that you were still alive and had made it through the surgery.
“We walked out of the recovery room and down to the waiting room, and everyone was very complimentary and congratulatory to Aaron, who had really steeled himself for it and pulled together every ounce of his koiyach— his strength—to do it. And I think he felt good about himself.
“We went home then, and came back the next day, and you were walking already, and advertising your huge incisions, and after that you had a completely remarkable recovery and at every point you kept saying how fortunate you were.
“Gail and I were grateful—that you were alive, and that we were able to provide a place for your kids. It was very satisfying for us to see them all assembled—to see how important you are in their lives.”
I nod, but, as on the evening before surgery two years before, find that I can’t speak.
“And I guess I’m also remembering now that Fred Sachs came to see you.”
“Yes,” I say. “He stopped by to visit me at least once a day, and on the second day, I think it was, he brought me a book about Brooklyn—it had lots of photos, including some of Erasmus and of other places we remembered.”
Fred Sachs was associate chief of medicine at Yale, and he had gone to Erasmus with us. At the time of my surgery, Jerry says, Fred was dying from prostate cancer, but he kept the news quiet and never told anybody.
“Do you remember that he had intended to come to the talk you gave a few weeks before your surgery, for the program in Humanities and Medicine, but he called at the last minute and apologized?” Jerry asks. “So that was the reason he couldn’t come—because he was very sick with the prostate cancer.”
“When Fred visited with me,” I say, “we talked easily—as if we’d last seen each other a few weeks ago, instead of forty years ago, and he had the sweetest smile and the kindest manner. He was a brilliant and very unassuming guy.”
“Yes he was,” Jerry says. “Everybody at Yale loved him. He was very smart, very gentle, very modest. He was a good doctor.”
“When we were growing up, Fred lived around the corner from me, on Linden Boulevard, and we used to walk to and from school together sometimes,” I say. “I sent him a copy of Transforming Madness when it came out a few months after surgery, with a letter in which I said I hoped we’d be able to get together the next time I came down—the three of us—but by the time the letter got to him, he was gone.”
Jerry makes sure the fire in the fireplace is out, and then we head upstairs to go to sleep. He gives me a hug goodnight, and I find myself thinking that yes, those qualities that lie at the heart of friendship—that allow us to see and appreciate one another for who we are and thereby to more truly know one another—that inspire trust, constancy, kindness, and generosity—these also lie at the heart of what we hope for in our doctors. I comment again on what I’ve been thinking about in recent weeks—the parallels between our lives and the ways in which doctors and scientists have often come upon their insights, diagnoses, and discoveries—and on the contingencies of chance, accident, and sheer good luck that conspired to return my life to me—and I quote Pasteur’s remark, that “where observation is concerned, chance favors only the prepared mind.”*
Jerry smiles. “What I think, Neugie,” he says, “is that in your case, chance favored the prepared heart.”