Attending

by Ronald Epstein

  The radiologist was diligent. He went back to a CT scan from seven years before, also done after a kidney stone. There it was. No one had noticed it because they weren’t looking for it; they had no reason to look for a liver mass. Even with my untrained eye, I could see a subtle shadow there. The radiologist estimated that in the seven years since the CT scan, it had grown in diameter by one millimeter. He was sure that it had grown; the scans are quite accurate. He thought it looked like benign nodular hyperplasia, a harmless nondisease that had gone undetected until scanners got more sophisticated and ultrasonographers more proficient. I did some quick calculations. One millimeter does not sound like a lot, but it might be a 10 percent increase in volume or even more depending on whether it was round or irregularly shaped. That’s still pretty slow. I was fifty-two at the time, and I calculated that at that rate of doubling, I’d still have at least some of my liver uninvaded at age ninety. This did not provide much solace, though.

  The options were to do nothing and take my chances, do a biopsy to get a definitive diagnosis and risk bleeding or infection, or do a series of MRI scans to see if it was growing at a detectable rate. But, at one millimeter every seven years, you’d have to do a lot of scans over a long time—expensive, unpleasant, and anxiety provoking.

  A large part of my professional life consists of helping people make difficult decisions, and I thought of myself as quite capable of making difficult decisions in general. Or so I thought until I found myself asking the same question of my primary care physician that Richard Grayson had asked me only a few months previously: “What would you do?” Now I understood what it felt like to have all of the facts yet to be unable to decide—and how different it was to be on the other side of the stethoscope. My rational mind and emotional mind were at war. Rationally, I knew that one-third of the population has some kind of incidentaloma if you look hard enough, and that over 90 percent of these are benign—and that mine had all of the characteristics of a benign tumor. But it didn’t help to hear about other people’s incidentalomas because mine was mine. I was living with uncertainty—and it was different from anyone else’s.

  Having a good imagination was a curse. I was convinced that I had the worst kind of liver cancer. I just wanted it cut out, whatever it might be. I thought about whether I’d prefer to have a liver transplant in Rochester, or in Pittsburgh or in Cleveland, where they had more experience. Then I thought about canceling my appointment with my primary care physician, just wanting to forget about it entirely.

  Fortunately, my doctor was a good listener. He didn’t challenge my fears; he listened patiently. He was quiet for a while, then asked me what I was thinking. I said that I wanted to forget about it. He said he was anxious too and had consulted a couple of his colleagues, who also doubted that forgetting about it would be the wisest choice. That was not what I wanted to hear. I didn’t like the idea of getting a biopsy. Nor did he. We chose a middle way—getting a scan every four months for a year. I didn’t like that option either; it would prolong uncertainty for months, and even though I knew that the likelihood of finding something serious was small, I would be anxious prior to each test. Yet, I found solace in the knowing that the decision—and the anxiety—was shared. Just like Richard Grayson, I sought shared mind, not just advice or facts.

  That I’m sitting here writing about my incidentaloma eight years later means that it is unlikely to be a cancer. But that doesn’t mean zero. I chuckled when a few weeks later the MRI scan report identified yet another incidentaloma in my liver, most likely a small tangle of blood vessels, as well as a not-completely-simple cyst (as it was once described to me) in my right kidney that had been seen on a previous set of scans. The next two scans showed no growth of the liver mass nor of any of its “friends.” My uninvited guests had become permanent cohabitants, ones with whom I had to make peace.

  7

  Responding to Suffering

  The word suffering is strikingly absent in conversations among physicians and patients.1 Physicians commonly talk about pain, disability, stress, coping, and quality of life. In the research world I inhabit, my scientist colleagues talk about diminished “health-related quality of life” and fewer “quality-adjusted life years.” But none of these terms have quite the same meaning as suffering, which implies a more personal and pervasive distress, one that affects someone’s identity—the ability to be oneself and to be in the world. Suffering is more than symptom checklists and “rate your pain from one to ten.”

  It’s not that doctors don’t know what it means to suffer; many people decide to go into medicine as a result of their own suffering or that of a close family member or friend. That suffering might not be dramatic or life threatening, but it usually does raise the specter of impermanence. For me it was childhood asthma. I wanted to understand what was happening to me, why I couldn’t run more than a few yards without getting short of breath, why I was different from other kids, and what the future might hold. If I had been born a few decades later, I’d have explored everything about asthma I could find on the Internet. Instead, I turned to our home encyclopedia and learned all I could about asthma and, later, the human body and the illnesses that could afflict it.

  But not until two years after college did I decide to change my life course from aspiring musician to physician. I was living in Amsterdam, studying music, and had taken a month off to visit a good friend who was on a Fulbright grant in Varanasi, the spiritual capital of Hinduism, on the banks of the Ganges. Here suffering was made visible. Amid the heat, noise, squalor, and wandering cows, I saw beggars with missing limbs, old men blinded by trachoma with spines deformed by tuberculosis, children with unrepaired cleft palates, and families that had never known anything but hunger. Occasionally, a black sedan with tinted windows would dodge the human and animal masses, carrying the materially content from one island of tranquility to another.

  After a few days in Varanasi, I borrowed a bicycle and rode eight miles to the deer park in Sarnath, where the Buddha delivered his first discourse on suffering. By the end of the ride I was hot, dusty, and thirsty. And there, at the entrance to the deer park was an orange-juice vendor, squeezing oranges. The juice was delicious—so cold and sweet.

  By the next morning I had developed a fever and abdominal pain. I felt bloated and weak and didn’t want to move. I saw the vendor squeezing the juice, just juice, no water. Or so I thought. I later learned that orange-juice vendors were notorious for surreptitiously cutting the juice with (presumably contaminated) water. Typhoid was endemic.

  I had to get tested. A bicycle rickshaw transported me to the clinic a mile away. There, in the waiting areas, I saw hundreds of people crowded into oppressively hot small spaces, spilling over into the street, wailing in misery and grief, with open fractures. Smells of blood, urine, and vomit. I was overwhelmed by it all and petrified about my own situation—I knew that people could die from typhoid.

  A nurse quickly ushered me into a small room. The doctor was dressed in an immaculate starched white tunic. He took my symptoms seriously and examined me carefully. He said that I did not need to be hospitalized, but that I should have blood tests and return the next morning. The test for typhoid was negative, and over the next few days I recovered. But the images of suffering remained indelible. Only later did the irony of the situation—a visit to Sarnath and a lesson in suffering—dawn on me.

  A few weeks later, back in Amsterdam, I was awakened before dawn by a viselike pain on the right side of my abdomen, extending to my flank and back. I suspected that it might be a kidney stone; I’d had a friend who’d had one and described it as the worst pain imaginable. His description was no exaggeration; no matter which way I moved, I couldn’t get comfortable. Even more than in India, I felt desperate. I needed the pain to stop. Immediately. Again, I was scared.

  Luckily, my roommate had a car. She drove me to the university hospital. The emergency room was quiet. I don’t recall seeing other patients, even in the waiting room. Soon I w
as on a gurney, being wheeled down empty corridors, all painted stark white, no windows. The doctor too was all in white—white jacket, white pants. He told me that I’d need an X-ray. Then everyone disappeared and I was left alone in that sterile landscape, without a person in sight, squirming, writhing in pain, not sure what would happen next. One of the nurses came out from behind a closed door and told me to stop moving and not to moan. Then she disappeared. Minutes passed. Everything took on a surreal quality. Eventually, someone started an IV and someone else did an X-ray to look for the stone. With some IV pain medications I was pain-free within an hour or two. I went home and was even well enough to go to a concert that evening. In that respect, the care I’d received was excellent. One could say that my health situation had resolved itself.

  Except it hadn’t. I still felt shaken and vulnerable. And since the X-ray hadn’t identified a stone, I was also left with uncertainty. With no definitive diagnosis, I went back for three follow-up visits. Each time, I was asked to produce a small specimen of urine, then interrupt the flow so the doctor could perform a vigorous rectal examination (the technical term, prostatic massage, doesn’t fully capture the experience), then I’d produce a second specimen, again interrupting the flow, then I’d produce a third. I had two more appointments during which these urinary acrobatics were repeated, and I finally got up the courage to ask, “Why are you doing this?” The doctor explained matter-of-factly that because I had recently been in India, and because they had not identified a stone, they needed to test for other things, including tuberculosis. One clue, he said, could come from a culture of prostatic fluid. The prospect of TB did not sound good. If he had explained this in the first place, it would have left me feeling less embarrassed and also less anxious about what was going on. The TB tests were negative, and we all assumed that this was indeed a kidney stone. I was discharged from the clinic; the doctor’s parting words were that I didn’t need to come back and that I should drink lots of water. Since then I’ve had several more episodes. Now, I dread ending up in an emergency room where I might be mistaken for a “drug seeker” and denied pain relievers. Interestingly, no physician has ever thought to ask how having had kidney stones has affected me.

  These illness experiences tipped the balance and pushed my decision to go into medicine. I resolved never to let any patient of mine feel abandoned in this way. I learned, in a visceral way, that doctors could reduce or worsen a patient’s suffering not only through treatments but also by how they behaved and how they chose to share information—or not. I envisioned my job as not merely to prescribe treatments, but also to heal through sharing information, being present, and being kind. I had no idea how difficult that could be.

  INCONVENIENT TRUTHS ABOUT SUFFERING

  There are several inconvenient truths about suffering. The first is that even when diseases are considered “cured,” suffering can persist. Recently, I cared for a young man who had worked as a skilled machinist. He had been cured of his leukemia with a bone marrow transplant. While this was clearly reason for celebration, he now lived in chronic pain from graft-versus-host disease, a condition in which the transplanted white blood cells—his body’s new immune system—rejected the host cells from his own intestinal tract and skin. He could barely eat due to abdominal pain and nausea, and his skin was raw and prone to infection. At age thirty-five, he was facing amputation of both legs due to chronic, untreatable skin infections that had spread to the bone. He spent more than half of his time in hospitals and the rest recuperating at home, socially isolated and impoverished due to his illness. He could barely get out of bed, and his pain required high doses of narcotics. This situation was deeply poignant for his family and the clinical team; he was considered a “survivor,” yet each medical “success” only seemed to increase his suffering. I noticed that clinical staff didn’t relish entering his room—he was a living reminder of our failures.

  Diseases that have no symptoms at all can also cause suffering. Recently I had a patient—also a physician—who was diagnosed with high blood pressure, commonly described as a “silent killer.” At first he tried to convince himself—and me—that what he had was “white-coat hypertension”—when patients have normal blood pressure except when in the presence of a doctor. To make sure, I had him wear a blood-pressure monitor for twenty-four hours. I discussed the report with him a few days later, and even though there were only a few normal readings (mostly while he was asleep), he said to me, “I’m not really hypertensive; it’s just that my blood pressure is high at times.” I was surprised, because he—as a physician—would routinely prescribe antihypertensive medications to patients every day.

  This physician-patient offered insight into why some people avoid coming to the doctor, and why others take their medications only when they feel “tense,” or not at all. People feel differently about themselves when they are given a diagnosis; they go from being an ordinary citizen to being a reluctant patient. Sometimes they feel less well, or simply flawed, fragile, or not quite whole; sometimes, as studies show, they end up missing more days of work, even though the disease is asymptomatic.2 I asked him why he was so reluctant to take medications. He said it made him feel like a failure. Having lived a life of healthy eating, meditation, and exercise, he thought that he could somehow manage to avoid high blood pressure despite a genetic predisposition, as if virtue could trump DNA. I said, “Genetics is powerful, isn’t it?” We both wished that things might have been otherwise. The pills, which he ultimately was willing to take, might lower his blood pressure but not his sense of failure. About the latter, I wouldn’t have known had I not asked.

  Sociologist Arthur Frank recounts how he experienced intense health-related suffering even in the absence of pain, illness, or disease. A “suspicious spot” was found on an X-ray several years after a presumed cure of his testicular cancer.3 He knew all too well that when testicular cancer recurs, often it cannot be cured. Contemplating harsh chemotherapy and an uncertain future, his anxiety was disabling. Ultimately, further testing proved negative—he was and is cancer-free—but he was struck by how his suffering during that waiting period went unnoticed and published an account as a reminder to physicians that “routine” diagnostic tests are rarely routine for the patient.

  Even though doctors experience that same kind of anxiety as Frank when they themselves become patients, when in the physician role they find themselves glibly ordering diagnostic tests even for incurable illnesses such as HIV, lupus, or cancer. When executing the series of mouse clicks to order a test, I can forget that, at the same time, a patient might be contemplating his demise. Patients rarely speak up about this kind of suffering, perhaps assuming that it’s not part of normal medical discourse. It takes just a moment to notice and acknowledge, “It’s going to be a few days before we get the results, and I’ll call when I know. How are you doing with all of this?”

  THAT WHICH WE CANNOT NAME

  The discourse on suffering went into hibernation during the years of impressive technological advances in medicine starting in the 1960s. I suspect that the heady optimism that accompanied the advances in our understanding of the mechanisms of disease and the promise of new treatments obscured the reality that these advances alone would not make suffering vanish. In fact, until the early 2000s, the tagline of the National Cancer Institute was an overly optimistic “to eliminate all death and suffering due to cancer by 2015.”

  Not until the 1980s was serious discussion about the nature of suffering and goals of medicine rekindled, by Eric Cassell, a New York City internist. Cassell was devoted to understanding communication between patients and physicians—when it worked and when it went awry. He remains a key figure in a countercurrent in medicine concerned with the human experience of illness.

  Cassell first described suffering as a holistic experience where there is “severe distress associated with events that threaten the intactness of the person.” This definition was radical. By looking at his own practice, as well as listen
ing to and analyzing audio-recordings of consultations between patients and physicians, he realized that doctors often missed the point—they did not see patients’ suffering. In a seminal article in the New England Journal of Medicine in 1982,4 he reminded the medical community that the central obligation of healers is to address suffering—not just cure disease or relieve pain. He showed how suffering is only loosely associated with pain; that suffering itself has meaning, and that meaning can affect the severity and quality of a person’s distress and the sense he makes of it. After all, the pain of childbirth can be more intense than that of a heart attack, but the overall experience is different—a joyous outcome rather than terror about the future.

  Cassell showed how suffering is more than merely having a diseased part—a lung, a kidney, a brain; he said that suffering is experienced by whole persons. Other domains of suffering—psychological, existential, spiritual, financial, social—are often more devastating than physical symptoms. I’ve heard many chronically ill and dying patients say that the worst part of their situation is not the illness itself but the way the illness has impoverished or otherwise burdened their families. Cassell knew too that contact with the health care system can make a patient’s suffering worse—“If we’re not a part of the solution, we are a part of the problem.”5