Why doctors ignore suffering

It’s easy to look away.
It’s easy to look away.
Image: Reuters/Shaun Best
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The word “patient” was not originally coined to reflect forbearance. Rather, it meant “one who suffers” and is derived from the same Latin root which gives rise to the term “passion” (as in the “Passion Plays” which depicted the agony of Christ’s final hours). Indeed, “compassion” is the emotional response to suffering. It is restorative for those who travel the arduous journey of illness.

A former editor of the New England Journal of Medicine, Dr. Thomas Lee, recently wrote an opinion piece for the Journal in which he revealed a trade secret: physicians have ceased to use the term suffering. The observation is spot on. In medical circles, uttering of the “s” word within hospital wards and outpatient clinics occurs with approximately the same frequency as does the shouting of racial slurs. It’s just not done. As for written communication, Lee points out that the venerable Manual of Style of the American Medical Association advises writers to refrain from “…describing persons as victims or with other emotional terms that suggest helplessness—afflicted with/suffering from.” These days, it seems, patients “have” diseases without “suffering from” them.

But the point is not simply that physicians don’t articulate the term suffering. We have a front row seat—or perhaps a luxury box—from which to view suffering, yet too often, we choose to ignore precisely the phenomenon that we are charged to heal.

As I read Lee’s article, I recall my final encounter with a dear friend. The experience prompted my conclusion that alleviation of suffering should be my modus operandi, yet I confess that I still struggle to embrace the MO with sufficient enthusiasm. In fact, I’m haunted by my failure to respond to a stirring teaching moment, if not a precious bequeathal.

In 1981, during my last months of freedom prior to the start of medical school, I studied at a yeshiva in Jerusalem. In the midst of study, I contracted a severe and debilitating affliction, a variant of mononucleosis, which defied diagnosis. The early ‘80s represented the dawn of the AIDS era. Nobody knew how to spell HIV at the time and the uncertainty prompted school administrators to swiftly decide to quarantine me. I was viewed as a leper by almost everyone except a man known as Rav Benny, the students’ affectionate moniker for Rabbi Benjamin Eisner. In fact, it was Rav Benny who asked that I relate the story that, finally here, I will share.

Every night during my illness, Rav Benny would forego his dinner to visit me. He didn’t offer just a perfunctory hello at a distance. He insisted on entering my room then, on most visits, dragging up a chair, to be near and console me. When I warned him that he may be foolishly putting himself at risk, he disabused me of my worries with sheer logic. “My darling” he intoned, “this couldn’t be as risky as you suggest. If it were, every one of us would contract the bug and, before long, mankind would cease to exist. Plagues of that magnitude did not arise even in ancient Egypt!” His encouragement assuaged my loneliness.

Over the years, my relationship with Rav Benny strengthened, and our families bonded. So I was distressed to receive a call from him, three decades after our initial meeting, informing me of his diagnosis of metastatic pancreatic cancer. During the conversation, I mumbled some futile medical advice, but it wasn’t long before I was summoned to his bedside at a prestigious academic medical center not far from the neighborhood where I lived.

On a crisp Friday morning in autumn, I prepared myself to say goodbye to the most loving of teachers. My wife had baked challahs, which I presented to him when I arrived. Rav Benny thanked me as he caressed the smooth, egg-varnished braids of the ritual Sabbath loaves. He had, as I’d feared, no appetite but delighted in breaking off doughy pieces for the other students who had gathered round. The students were smart enough; however, to read the hints in his gestures with the bread, so soon, they departed. The rabbi, for some reason, wanted “alone time” with me.

At his request, I pulled the curtain shut so as not to disturb the patient lying in the adjacent bed. Stillness presided in the partitioned space. No words were required for me to see that the man ached. Slowly, Rav Benny rolled up the legs of his pajama pants. He sensed my discomfort—the uneasiness of someone who wanted to be his student and his friend but not his physician. “Let me continue,” he requested. I nodded. Exposed before my eyes were swollen legs of the largest diameter that I’d ever witnessed. The image was stark. Beneath the hospital attire laid a forsaken person. The edema that had backed up into the lower reaches of his extremities had stretched the skin so tight that he’d surely lost all feeling. His thighs, in particular, were transformed to cylindrical vessels that were ready to burst from fluid pressure. “No one examines me anymore. And even if they did, they wouldn’t understand my ordeal.” He had something to impart. The medical establishment, even at the renowned institution, was derelict in its duty.

“Come closer,” instructed Rav Benny. “Touch me. Understand my suffering. Don’t let this happen to anyone else. It is forbidden.” He spoke, then, in unambiguous Hebrew, using phrases that bore the status of rabbinic injunction. For physicians to allow suffering to go unchecked was far less acceptable to him than for any of his disciples to eat pork or practice idolatry. “Where are the souls of your colleagues?” he asked with bemused curiosity.

Rav Benny died later that same day, three years ago. His message then was clear, but only now can I internalize it.

Dr. Tom Lee is currently the Chief Medical Officer of Press Ganey, an organization committed to unraveling the riddle of suffering. This year, I attended their annual conference. There were extensive workshops, and the obligatory booster meetings of the faithful followed a rousing keynote address by former president Bill Clinton. Like any other, the company has its detractors, and critics of Press Ganey question whether measuring patients’ descriptions of their care has any value, or is just a business gimmick. After all, medicine is complex, and what do patients know of it? I, for one, have been captured by the company’s drive for goodness. And what is unassailable, even by skeptics, is Press Ganey’s attempt to analytically define suffering with scientific precision in order to reduce its pernicious consequences.

Dr. Deirdre Mylod, a Senior Vice President at Press Ganey, offers a useful framework to understand suffering by distinguishing between “inherent” suffering—for instance, the pain of a tumor that presses on a the spinal cord or the hair loss caused by the chemotherapy prescribed to vanquish that tumor—and “avoidable” suffering. Avoidable suffering arises from dysfunction, and the list of contributing factors is endless. Knowledge deficits (perpetuated by inadequate explanation from healthcare personnel), fear of falling at home after departing the hospital (potentially preventable with thoughtful discharge planning), need to walk great distances from car to treatment clinic (parking really does matter!), a patient’s observing of a medical team working but not collaborating (cohesion counts!)—those are only a few examples of preventable suffering.

In order to quantify suffering and its impact, the Press Ganey team has constructed an “overall suffering score.” Data were collected on nearly two million patients to develop a stable and robust measurement. The measurement does not range from 0 to 100. Scientists who developed the model realize that there is hardly a person for whom suffering is completely extinguished, so there is no score of “0” suffering. And there is not likely anyone for whom no further suffering can occur; therefore, no score of “100” exists.

Press Ganey’s operational approach centers on the idea that, even if we can’t eliminate suffering entirely, we can usually alleviate it by developing a course of action in response to the type and level of suffering. Action plans may include a checklist reminding us to optimize analgesic regimens against pain, to prescribe drugs with fewer side effects, and to become better listeners. That might seem pedestrian, but patients like Rav Benny are too infrequently the beneficiaries of such obvious recommendations. That is so sad, for who would not be moved by the sheer humanity of such gestures? By responding with naked displays of helpfulness, doctors could radically alter the experience of being a patient.

Lee is, perhaps, an idealist but he is not naïve. He admits that “relief of suffering may be a task too vast to seem real for most people—something on the order of achieving world peace.” Vast and potentially amorphous! Fortunately, many bite-size interventions have emerged from the Press Ganey databases that are designed to prevent avoidable suffering and mitigate inherent suffering. Several highly regarded academic medical centers, such as the University of Utah and the Cleveland Clinic, have implemented dramatic changes in the culture of caring at their institutions that have favorably altered the patient experience.

Still, not everyone “gets it.” Rav Benny immediately grasped that his disease was incurable. Yet because he was endowed with an unlimited capacity for kindness, it was anathema for him to behold healthcare professionals who were indifferent to his hardship. Surely, he intuited, the problem must be rampant.

Lee has responded by calling for an “epidemic of empathy.” The idea is based on the belief that empathy is, rather than emotional, a predominantly cognitive attribute that can, therefore, be taught to most people, while social norms and behaviors can spread empathy just as they can spread germs. Indeed, investigators at the University of Wisconsin demonstrated that a two-week course of daily internet-based audio instruction could cultivate feelings of compassion. Will Lee succeed in infecting others with his passion for compassion? I have a feeling that Rav Benny would offer his blessing, “May it spread like a plague in Egypt!”