Attending

by Ronald Epstein

  Not every patient is interested in refocusing and reclaiming. But I’ve seen it enough to know that I need to recognize it and nudge it along when I can. Healing becomes a shared project. Patients who wish to approach their illnesses in this way are extraordinary; you cannot force it. Too often, I have heard clinicians and family members exhort patients to “fight” their illnesses, as if they were engaging in a crusade against evil, or to see illness as bringing them closer to God. Sometimes people urge patients to “accept” their illness, as if that final stage in Elisabeth Kübler-Ross’s five stages of dying is a value universally shared.20 It isn’t. While some patients may reach an inflection point where they comfortably shift from curative treatments to comfort and palliation, others derive meaning from raging “against the dying of the light.”21 Expectations that patients should somehow transcend their illnesses can burden them with a sense of moral failure that compounds the insults of the disease.

  LEARNING TO LISTEN

  A family physician colleague, Lucy Candib, has worked for her entire career with indigent and working-class populations in Worcester, Massachusetts, many of whom have experienced abuse, violence, and deprivation. She hears about horrific experiences, examines scarred bodies, and documents what she hears and sees in the hope that it won’t happen again to this person, or to anybody else. She is a passionate advocate for those who lack a voice in society, especially for people who seek health care in the aftermath of a life trauma. Candib believes that clinicians should “treat patients’ experience as testimony,”22 verifying and legitimating the personal (if not absolute) truth of each patient’s story. Suffering is personal; we all experience it differently. There is no test, no meter, no scale. Treating patients’ experience as testimony means respecting a patient’s wish to be heard—on her own terms, not anyone else’s. This resonates with me, in part because it sets the conditions from which compassion can emerge.

  8

  The Shaky State of Compassion

  Early in my third year of medical school, I learned of the writings of George Engel. As I mentioned in chapter 1, Engel was the prominent internist and psychoanalyst who formulated a “biopsychosocial model” of care.1 I wrote to him about my frustrations as a medical student. He shared with me his view that medical institutions, overly preoccupied with technological advances, had forced the human dimensions of medicine to the edges. That was certainly my experience. Engel suggested that I come to Rochester, where the institutional climate was different. In my training in family medicine and subsequent fellowships with him and several of his protégés, I saw a way to achieve what Engel called “being scientific in the human domain.”2

  Engel had an extraordinary capacity to connect with and know other human beings. Patients would meet him for the first time and reveal themselves in ways that provided clues to their medical diagnoses while also creating a human bond. Engel would look curious, with a quizzical gaze. He’d ask, “What happened next?” and “What were you thinking when you did that?” and “You mentioned your daughter. What did she suggest? Did it help?” and “What were they doing when your symptoms started?” He’d keep asking until he got a full visual picture of the patient’s home, her family, her habits, and her ideas about what was going on. He’d say, “I wonder . . . ,” and you’d feel a sense of wonder. Patients felt understood.

  Engel’s approach was radically different from how most of us typically have a social conversation. Maybe you describe an event or a feeling (“When I threw my back out, it was the worst pain of my life”), and your friend responds with a comment, an interpretation, or a question, or she might mention a personal situation that she considers similar to yours (“Yeah, I was in the hospital with a gallbladder attack last year—that was the worst”). This kind of back-and-forth can instill a sense of shared experience: “Wow, she knows what pain is like too.” But it can also flop. The other person’s story can make you clam up if it doesn’t resonate, if you don’t feel understood: “What’s a slipped disk compared to a gallbladder attack?” you think, irritated.

  Engel liked to say that what patients want most is to know and understand what is happening to them and to feel known and understood. Known, not judged. Deep listening is the first step toward compassion. But deep listening is also important for another reason: it is essential to avoiding miscommunications and errors in clinical care. Sometimes when I find myself in a puzzling or challenging situation, I can almost hear Engel’s voice in my head, guiding me to listen more deeply, to adopt his inquiring, curious smile.

  Deep listening is a form of contemplative practice; it can be taught and learned. In workshops, for example, I’ll ask physicians to write and share stories. First, I ask them to select an important event from their professional lives—it could be a moment of connection or it could be a time when things went wrong. Then they take a few minutes to write about it—what happened, who was there, what made it memorable, and whether they were able to make a difference in a positive way. Participants pair off and tell (or read) their story to a partner, who has been instructed to be an attentive listener, and to be aware of—but avoid acting on—an impulse to offer interpretations, advice, or judgments, or to talk about their own experiences. Rather, the listener should contribute only to encourage the storyteller to elaborate, ask clarifying and reflective questions, and explore the storyteller’s experience.

  While this kind of listening sounds simple, it isn’t, especially for physicians, who have been socialized to assume a dominant role in clinical conversations (physicians account for 60 to 80 percent of the talking during an office visit).3 It takes practice. But, for most people, the feeling of having been listened to—deeply and without judgment—is validating.

  SUFFERING WITH

  While compassion—“suffering with”—has always been considered a virtue for clinicians (or anyone else), little has been written for physicians about how to cultivate it. Some think of compassion as innate; you either have it or you don’t. But we have all seen people who are compassionate under some circumstances but not under others.4 I’ve also seen, in students and colleagues, how compassion can grow or wither during one’s career.

  Compassion is in short supply. Beth Lown, an internist at Harvard’s Mount Auburn Hospital and medical director of the Schwartz Center for Compassionate Healthcare, surveyed 800 recently hospitalized patients and 510 physicians in 2011. While 85 percent of patients and 76 percent of physicians said that compassion is “very important” to successful medical treatment, only 53 percent of patients and 58 percent of physicians said that the health care system generally provides compassionate care.5 And compassion, like presence, is not doled out equitably. Doctors, like most people, tend to be more compassionate toward those whose illnesses they consider legitimate, and less so for those perceived to be at fault for their situation—those who smoke, are obese, or engage in risky sexual behaviors. When physicians lack compassion—or the ability to express it—they inadvertently add to the burden of patients’ suffering.

  In his landmark experiments about obedience to authority,6 psychologist Stanley Milgram demonstrated how fragile compassion can be. In one experiment, an authority figure instructed research participants to give electric shocks of increasing strength to a “student” as part of an “experiment on learning.” Unbeknownst to the participants, these were mock electric shocks and the “students” were trained actors. Milgram found that the participants were obedient, even though they experienced obvious distress at delivering the shocks. Many gave shocks in the “lethal” range when instructed to do so and continued even when the “student” repeatedly asked that the experiment be stopped. The participants were debriefed after the study and were clearly troubled by their actions.7 It took so little for them to leave their compassion in the parking lot.

  Even those who have the highest aspirations to act compassionately do so only under certain conditions. In the now-famous 1973 Darley and Batson “Jerusalem to Jericho” study, divinity students
were instructed to prepare a talk about the biblical parable of the Good Samaritan, a virtuous man who chose to assist a stranger who had been beaten and left for dead on the side of a road.8 The experimenters placed a shabbily dressed person—obviously in need—slumped by the path that the students took to get to the lecture hall across campus. Half were told they had ample time; the other half were told to hurry or they’d be late. Those in a hurry were much less likely to stop to assist the man in need.

  Medical journals frequently publish stories about how physicians—who, like the divinity students in the Good Samaritan study, think of themselves as compassionate—have acted in uncaring ways they later found disturbing. They inflicted pain, did not take the extra moment with a distressed family member, or were rude with a difficult patient. Recently I read a brutally honest story in a medical journal in which an otherwise conscientious physician found himself cutting patients short during an afternoon clinic session so that he could finish on time. Later, he realized that he was doing so because he wanted to arrive refreshed and relaxed for a prestigious lecture he was about to give.9 The author, a rheumatologist, is a passionate advocate for effective communication in medicine and does research on quality of care. Ironically, I have found myself in exactly the same situation—for example, prior to a dinner with a visiting professor promoting humanism in health care.

  CULTIVATING COMPASSION

  Up until now, it hasn’t been clear what it might take to change this shaky state of compassion. Exhortations to be more compassionate don’t work. Compassion isn’t a “muscle” that is reliably developed as a result of caring for the sick; some physicians become more cynical and unkind.

  Roshi Joan Halifax, anthropologist and Zen Buddhist teacher, has worked with the dying, with prison populations, and with others at the extremes of life. She writes about how compassion is both “contingent and emergent.”10 By contingent, she means that compassion appears in individuals under certain conditions; none of us is intrinsically compassionate all the time. For compassion to emerge, we have to create the right conditions. These conditions have to do with our inner landscape—our own emotional life, attitudes, and self-awareness—and the outer environment, the institutions in which we work. She points out that compassion is cultivated; it isn’t a product that can be manufactured. A good gardener cannot make plants grow; she can only coax them to grow and flourish by cultivating the soil and providing nutrients and water. Similarly, compassion doesn’t spring from the earth unbidden and it doesn’t easily submit to checklists and industrial models of health care. Compassion is also emergent in that it may manifest in surprising and unpredictable ways—through words, small gestures, advocacy, even silence. The challenge is to create those conditions in which compassion is most likely to arise, but not necessarily to expect it to manifest the same way each time.

  INGREDIENTS OF COMPASSION

  Compassion is the triad of noticing another’s suffering, resonating with their suffering in some way, and then acting on behalf of another person. Research suggests that awareness of our inner states can help us recognize the inner states of others.11 Some of the same neural circuits are activated when we witness pain as when we experience our own.12 When we are distressed, we feel it first in the body; we do the same when taking in the distress of others, mapping their experiences onto our own, and feeling pain in response to theirs.13

  Yet the feelings and sensations that patients elicit in me are not the same ones that patients experience; I resonate with their pain, but it’s not the same. This resonance is the second ingredient of compassion—the “suffering with” part. A boundary gets blurred and you hurt too. But if I assume that what I am feeling is exactly what the patient is feeling, I would be wrong much of the time. I’ve made the mistake of mentioning to patients who’ve had kidney stones that I’ve had them too. Some patients take this as an empathic gesture, which leads to a sense of shared experience, but more often my self-disclosure falls flat; patients want me to understand their unique experience. They’re interested in their kidney stones and aren’t particularly interested in mine. Although I might think I understand their pain, their bland responses to my revelation confirm that I’m off the mark. My time is better spent asking about what it was like for them.14

  The third ingredient of compassion is action to reduce another’s suffering. Like most people, particularly those in helping professions, physicians often experience meaning and purpose when they do things to benefit others; compassion nourishes the healer. Engaging in compassionate action, we release endogenous opioids, which attenuate our own pain; dopamine, which promotes a sense of reward; and oxytocin, which generates feelings of caring, affiliation, and belonging.15 I suspect this reward response may be part of the reason clinicians work long hours throughout their careers and continue to work into their seventies and eighties, long after people in other professions have retired.

  But if compassion is its own reward—if it fills clinicians with a deep sense of purpose and well-being—then why is it in such short supply in health care? The answer has to do with the second of the three ingredients: resonating. When I resonate emotionally with another person’s suffering, I experience distress, a discomfort within. If I feel that I can do something to relieve the patient’s distress quickly, my own distress also dissipates. But if it’s not possible—if I lack the skills or if it’s going to take a long time—there’s a natural human tendency to withdraw, to pull away in self-protection. Mindfulness, here, is observing, understanding, and regulating my own emotional reactions so I can reliably sustain presence in the face of a patient’s distress—and my own.

  THE PARADOX OF EMPATHY

  Every medical school in North America now has a communication skills course. Typically students are tested on their empathy through exercises with actors trained to portray patients in distress. But these efforts don’t seem to have had enough of an effect on the seemingly inevitable decline in empathy during medical training.16

  Empathy, like compassion, has many definitions, but at its basis is a bodily, emotional, and cognitive insight into another person’s emotional life.17 This insight can be experienced and communicated in a cool and detached way (“If I understand correctly, this has been very difficult for you”), a welling up of emotion (“This is just awful”), or a bodily sensation, such as feeling your heart sinking or a lump in your throat. In medical education, students are taught to recognize and name another’s distress as an emotion without experiencing that state themselves—“I can see that you’re feeling afraid” or “You’re telling me that you were furious with him” or even “Very unsettling, all this uncertainty.” This kind of empathy is accurate, but can be chilly.

  This cool cognitive empathy is not always what patients want. They want a sense of emotional connection and caring; they want the physician to be warm and attuned to what they are feeling. However, it is a delicate balance for physicians. Sharing their personal feelings with patients is not always helpful and sometimes diverts the conversation away from what concerns the patient.18 Mindful clinicians are present, attuned, and empathic without appropriating the focus of attention from their patients to themselves.

  Juggling three “balls”—being empathically attuned to another person’s emotions, being attuned to your own emotions, and acting on the other person’s behalf—has been the focus of research by psychologists Carl Batson and Nancy Eisenberg for the past forty years.19 Using a variety of laboratory experiments, they have found that when we understand and assimilate another person’s emotions, we all reach a proverbial fork in the road. One path leads to self-protection: You say and do things to lower your own anxiety. You rationalize your actions. What you do may or may not help the other person. In short, you are focused on yourself and your own feelings. The other path leads to “pro-social” behavior, acts that relieve the patient’s distress through words, medications, surgery, or just by being present. It can be an expression of heartfelt connection with the patient—what
physician Michael Kearney calls “exquisite empathy”20—or compassionate action that directly relieves the patient’s suffering.

  In a series of experiments, Olga Klimecki at the University of Geneva and her colleagues set out to explore whether she could train people to be more compassionate.21 She based her training on Batson and Eisenberg’s model. First, she trained a group of participants to recognize and resonate with the emotions of others. While in a functional MRI scanner, the participants then watched videos that depicted human suffering and later completed surveys that measured empathy and personal distress. Then, in a second session, she led them in “kindness” meditation practices to evoke feelings of benevolence, kindness, and caring toward themselves and others (friends, “neutral” persons, and “difficult” persons), a practice designed to evoke compassion.22 Again, the participants were scanned and completed surveys. The results confirmed Batson and Eisenberg’s predictions: those trained only to resonate with others—and without skills to translate that resonance into compassion—felt more emotionally distressed; their brain scans showed greater activation in areas of the brain known to be associated with distress and vicarious pain.23 After receiving just one day of compassion training, these same people had a different neural “signature.” They felt energized and had a more positive sense of self. The scans of those who received compassion training showed that their “reward pathways”24 were activated and the “distress pathways” were no longer active.