APRIL 6, 2014
BACK IN 2006, my mother didn’t want to leave Florida or the home she’d shared with my father. But a chronic form of leukemia, so indolent her local oncologist reassured her, Don’t worry, you’ll die of something else first, morphed into lymphoma, which invaded her spleen. She was half-crazed by the pain, and then by the pain medication, and at that point she was in no position to resist my plan to fly her to Boston and be admitted to the hospital where I work. The gradual reversal of our roles, which had begun years earlier, had finally reached what seemed to me its sad completion.
She stayed seven weeks. I continued to see my own patients, but in the morning and at night and on my days off I sat for hours at her bedside. Where I noticed something: though I wore my ID and usually had a stethoscope slung around my neck, simply by sitting next to Mom I became invisible to my co-workers. It was as though I had stepped behind an unseen scrim. Some did look us in the eye and smile, and sat down to ask how we were doing, and actually listened to our answers. But many — surgeons and consultants, food service workers and janitors, nurses and respiratory therapists — either ignored us as they went about their efficient business or treated us with a kind of stiff cheer. If they knew me (and many of them, doctors and nurses with whom I’d worked for years, did), they seemed embarrassed. I imagined that what embarrassed them was seeing me, only a few inches from my usual place among them, yet — over there.
When my mother was well enough to be discharged — a brief pause, as it turned out, in her rapid decline — I told my colleagues what I’d noticed during her hospitalization. “You learn a lot on the other side of the bed,” I said, as if sharing one of those clever observations you make while traveling and repeat again and again after you return home. I told them that it didn’t matter if it was the person who brought the dinner tray or the chairman of the department, you could tell in five seconds whether someone really cared.
In the 1980s, when I was in medical school, we spoke of “bedside manner.” You don’t hear that term so much anymore. Perhaps it sounds patronizing, emphasizes the fact that the patient is lying down and the doctor is, literally, above him or her. Or maybe it’s that “manner” sounds too much like “mannered,” as in phony. That said, my role models back then, the doctors with the best bedside manners, seemed very sincere. It wasn’t a question of equality: they never would have called their patients “clients.” They seemed to me like priests, or college professors. I remember their immaculate hands, their chart notes penned in leisurely strokes of fountain ink, the folded rubber limbs of their stethoscopes peeking out from the pockets of their tweed jackets. They pored over sick bodies as if studying ancient texts.
Anatole Broyard, late book critic for The New York Times, seems to have shared my fantasy of the physician as a kind of literary scholar. While he was dying of prostate cancer, Broyard wrote a memoir, Intoxicated by My Illness. In one table-turning chapter, “The Patient Examines the Doctor,” Broyard writes:
[W]hat do I want in a doctor? I would say that I want one who is a close reader of illness and a good critic of medicine. […] I see no reason or need for my doctor to love me — nor would I expect him to suffer with me. […] I just wish he would brood on my situation for perhaps five minutes.
But now brooding is not enough. Doctors are supposed to “suffer with” our patients, to feel what they feel. The word most often used to describe this requisite is “empathy.” It’s a relatively new word — Phillip Lopate points out that it doesn’t even appear in his 1971 edition of the Oxford English Dictionary — and seems to have replaced the now-unfashionable “sympathy” and even more archaic “pity.” Today, “empathy” — or, rather, the lack of it — is supposedly everywhere. Columnists decry the “empathy gap” between rich and poor, millennials lack empathy, and sociopathic criminals are thought to possess an “empathy switch,” which they can flick off at will to avoid the inconvenience of being affected by their victims’ pain.
Hundreds of articles about empathy have appeared in medical journals in the past few years. Researchers find that patients of empathic doctors are more likely to take their medications as prescribed and achieve better control of conditions like diabetes and asthma, and are less likely to initiate malpractice suits. But several studies show that during medical school, internship, and residency, young doctors actually become less empathic, that in the process of learning how to care for sick people, they unlearn how to care about them.
Partly because of these studies, the results of which are reported in papers with distressing titles like: “Is There a Hardening of the Heart During Medical School?,” today’s doctors-to-be are encouraged, often required, to participate in activities meant to boost empathy. These include reading groups, journal-writing, museum visits, and role-play.
In some improvisations, medical students pretend to be patients: they confine themselves to wheelchairs for a day, or they walk into hospitals with fictitious identities and symptoms and throw themselves on the mercy of the busy ER staff. At one medical school, male students lie down on exam tables with their pants on, place their feet in stirrups, and spread their legs.
Leslie Jamison isn’t studying medicine — she’s a doctoral student in English at Yale, and the author of a novel, The Gin Closet, chosen by the San Francisco Chronicle as a Best Book of 2010. Jamison has worked as a baker, an office temp, a teacher, and, for $13.50 an hour, as a standardized patient or “SP” — and she’s the author of a brilliant new essay collection, The Empathy Exams.
In the title essay, Jamison recounts her experience as an actor in a medical school exercise. In other essays she looks at pain and her reaction to pain — her own and others’ — from many angles: her jaw is broken in a random attack on a street in Nicaragua; she has an abortion just weeks after a cardiac procedure; she watches a reality show about addicts and a documentary about a triple murder; she visits a miserable silver mine in Bolivia and a differently miserable prison in West Virginia. With each stop on what she calls her “pain tours,” Jamison asks what it means for human beings to care about one another’s suffering. The title of her collection refers both to the “empathy exams” that medical students undergo, and to Jamison’s examination of empathy itself.
Jamison writes of playing “Stephanie Phillips,” a woman, like Jamison, in her 20s. Stephanie’s SP profile states that she is having pseudo-seizures as a manifestation of grief after her brother’s drowning. In other words: Jamison is a writer moonlighting as an actor pretending to be an imaginary woman faking seizures for which she seeks treatment from students posing as doctors. And all this hard work at make-believe is supposed to result in real empathy — an apparent contradiction with which Jamison does not seem uncomfortable. She writes:
Empathy isn’t just something that happens to us — a meteor shower of synapses firing across the brain — it’s also a choice we make: to pay attention, to extend ourselves. It’s made of exertion, that dowdier cousin of impulse. […] This confession of effort chafes against the notion that empathy should always rise unbidden, that genuine means the same thing as unwilled, that intentionality is the enemy of love.
A few years ago I volunteered to serve as faculty for an exercise, similar to the one Jamison describes, in which students played doctors. It was called “Giving Bad News.” I wore headphones and sat on one side of a two-way mirror. On the other, a student acting as a doctor informed a patient that cancer had invaded her spine — that the back pain she’d chalked up to muscle strain, or a touch of arthritis, wasn’t so innocuous. Except that the patient wasn’t really a patient. She was an SP, a retiree who’d been trained to play the part and, along with me, to provide feedback afterward. Moreover, after watching a videotape of his or her performance, each student completed a self-evaluation form that included items such as “Builds a Relationship,” “Understands the Patient’s Perspective,” and “Provides Closure.”
I was a little skeptical about “Giving Bad News.” I balked at the notion that empathy could be scripted, rehearsed — graded! But, by the end of the afternoon, I’d been won over. The students who watched an instructional video before the role-play were, in fact, more likely to ask the “patient” about her social supports and to offer pain meds, and less likely to interrupt her. Most impressive to me, though — I noticed that students, who were, no doubt, empathic people in real life, didn’t necessarily know how to act empathically. One young man, who had seemed, when we chatted before the session, quite earnest and sweet, bungled his delivery of the bad news. “So, doctor, what does this mean?” implored the tearful woman playing the part of the patient. “Uh, it means you have about six months to live,” answered the student. Cut! I wanted to shout across the glass. But the woman allowed the scene to continue. Afterward, she gently told the student that his coldness had upset her. He apologized and seemed genuinely contrite. I believed that he would, in the future, be more careful.
I’ve struggled to understand what I witnessed that day. I think the student became more empathic, but I’m not sure just what that means. “Empathy,” essayist and physician Danielle Ofri writes, “is one of those odd concepts that is so central to human interaction, so obviously a requirement in medicine, something we know when we see, yet so difficult for many to precisely define.” Elusive as it is, in medicine we seem to have the urge — not surprisingly — to understand empathy as something physical, like a muscle that can be strengthened or fatigued, or a substance that can be replenished or depleted.
In recent years, scientists have indeed concluded that empathy is a physiological state. Doctors who feel true empathy in simulated encounters with patients experience alterations in their heart rhythms and microscopic changes in the amount of sweat on their skin. Oxytocin, the “empathy hormone” that women release during labor and delivery, and which causes them to bond with their infants (to obvious evolutionary advantage), seems to be involved also in sex, friendship, and other social interactions, which tend to work out better when people care about another. Brain imaging shows that the areas of the cerebral cortex that light up when we’re hurt also light up when we see another person hurting — that we really can, as Bill Clinton claimed, feel someone else’s pain.
So, in that exercise, “Giving Bad News,” had the medical student’s oxytocin been primed — his brain remodeled?
Maybe so. But the idea that empathy, like music appreciation, sugar cravings, and so many other subjects of recent Your Brain On … books, can be mapped and measured is at once utterly fascinating and completely boring to me. Of course empathy’s in the brain — where else could it be? What is it, that’s what I want to know.
The “effort” or intentionality involved in empathy may be as simple as remembering to say the right thing or, as the medical student I observed in “Giving Bad News” failed to do, remembering not to say the wrong one. Leslie Jamison raises the intriguing possibility that empathy is an act — elsewhere she calls it an “edifice,” or a “structure” — that role-play works not despite its artificiality, but because of it.
Indeed, throughout her collection, Jamison embraces artifice. She frequently draws attention to the fact that she is writing. She often refers to “this essay” in her essays. In “Morphology of the Hit,” she organizes the story of her broken jaw under subheadings borrowed from Vladimir Propp’s treatise, “Morphology of the Folktale,” which she describes as “basically a map for storytelling, a catalog of plot pieces.” Jamison uses similarly stylized formats elsewhere, including in “The Empathy Exams,” where she tells of her own abortion by turning herself into a character, an imaginary standardized patient. (One can’t help but notice that Jamison, as an “SP,” has the same initials as the fictional patient she plays, “Stephanie Phillips.”)
SP Training Materials
CASE SUMMARY: You are a twenty-five-year-old female seeking termination of your pregnancy.
Presenting a real patient, herself, as a construction, allows Jamison to characterize empathy as a peeling through the layers of someone else’s constructed self. Further, she suggests that empathy means trying to understand someone else’s place, while at the same time respecting that place as complex and unknowable:
Empathy requires inquiry as much as imagination. Empathy requires knowing you know nothing. […] Empathy means realizing no trauma has discreet edges. Trauma bleeds. Out of wounds and across boundaries. Sadness becomes a seizure. Empathy demands another kind of porousness in response. My Stephanie script is twelve pages long. I think mainly about what it doesn’t say.
Jamison’s “character,” like Stephanie’s, is also larger than a script can hold. She feels constrained by her role as a medical actor, a feeling to which anyone who’s ever been a patient — in “the sick role,” as it’s sometimes called — will relate. She writes, of the students:
I want to tell them I’m more than just an unmarried woman faking seizures for pocket money. I do things! I want to tell them. I’m probably going to write about this in a book someday!
Doctors find it especially difficult to empathize with patients who have psychosomatic symptoms, patients like Stephanie Phillips, whom Jamison calls, accurately, a “sort of empathy limit case.” Our common explanation is that they make us feel helpless, because their symptoms are untreatable — you can’t treat a seizure that isn’t really a seizure. Jamison offers a different explanation, one that would please Broyard (or Freud): these patients are particularly challenging “texts”:
Stephanie […] didn’t talk about her grief, because her seizures were already pronouncing it — slantwise, in a private language.
Adding to the difficulty, Stephanie might see a doctor’s well-intentioned attempt to interpret her seizures as invasive. Jamison reflects:
I’ve thought about Stephanie Phillips’s seizures in terms of possession and privacy — that converting her sadness away from direct articulation is a way to keep it hers.
A psychiatrist once told me, with alarming frankness, that “interpretation is hostile.” I think he was saying what Jamison expresses here: not everyone wants their pain exposed and analyzed.
And so Jamison considers the possibility that empathy isn’t always helpful. There’s a fine line between interpretation and hostility, between relating to someone else’s experience and appropriating it, between travel and transgression, inquiry and voyeurism. Yet another form of empathy, then, is recognizing empathy’s limits. Jamison notes that some of the medical students “seem to understand that empathy is always perched precariously between gift and invasion.”
Sometimes, Jamison allows, empathy has little to do with either feeling or understanding, roles or layers. The cardiologist about to insert a catheter into her heart to correct an irregular rhythm “offered assurance, rather than empathy, or maybe assurance was evidence of empathy, insofar as he understood that assurance, not identification, was what I needed most.” Recently, in an email exchange with a neurosurgeon who years ago successfully treated my son for epilepsy, he wrote about “how focused we become in our little special areas, and how easy it is to lose sight of the daily fears and concerns of our patients.” I wrote back to say that his skill had been empathy enough.
Still another kind of empathy is simply showing up. At the end of the title essay, Jamison writes about what she wants from her boyfriend, Dave:
You throw away the checklist and let him climb into your hospital bed. You let him part the heart wires. You sleep. He sleeps. You wake, pulse feeling for another pulse, and there he is again.
Jamison offers no all-purpose definition of empathy. That is, perhaps, her greatest contribution to the conversation: she invites us to think harder about what empathy might be — to excavate its layers — to approach empathy with more empathy, yes.
I’m thinking again of that medical student in “Giving Bad News.” I wonder if the real act of empathy I witnessed that day was performed by the woman who played the standardized patient; but after the scene had been played. Whether the care with which she led the student to see the pain he was capable of causing is what finally moved both him and me. Perhaps, when it comes down to it, role-modeling is at least as valuable as role-playing.
Now late in my own medical career, I find that many of the young doctors with whom I interact already display the empathy I’d want them to emulate. Just the other day, I watched an intern, exhausted and harried, tenderly stroke a dying woman’s hair. I felt my heart swell with an almost maternal pride.
And I felt this same pride when I finished The Empathy Exams — a book so wise, so empathic, by a writer barely out of her 20s.
I wonder if all this talk about the lack of empathy among millennials, young doctors included, could be wrong. And I wonder, too, whether the sadness I assumed my mother experienced at the end of her life, after we’d changed places — after she’d let the next generation take over — wasn’t what she felt at all.