During his entire career Richard had taught students how to design and interpret the results of clinical trials and assess the risks and benefits of treatments. He understood the statistics of his own situation well and knew how his situation was different: the average patients in those research studies were younger and their cancers were less advanced. You couldn’t imagine a patient who was better informed. However, the more information and statistics that Richard acquired, the more anxious and bewildered he became. His knowledge of medicine, statistics, research methodology, and probabilities carried him just so far. Despite being well-informed, he felt lost.
Now the decision—which had seemed easy before he started his journey—was harder. He kept changing his mind. He was frightened. A rationalist, he felt that his logical, analytical brain was being hijacked by emotions. Like most patients facing a serious and complex situation, Richard was experiencing cognitive overload; the stakes were high and emotions were raw, medical evidence was unclear, and the risks and the benefits weren’t completely known. He came back to see me to help sort this out. He asked, “What would you do if you were me?”
Before I move on to what happened, sit with me for a minute. Imagine you’re the physician in the exam room and this question was lobbed into your court. I knew that nothing was going to save Richard’s life, that having to make decisions was adding to his burden, and that he was frightened and his fear made it hard for him to think clearly. Whoever made the decision, Richard would have to live with the consequences.
Physicians dread when patients ask, “What would you do if you were me?” As a physician, you’re not the patient, but the patient wants you to be there, with him, helping him decide. In oncology, physicians have seen countless patients refuse chemo, then with the terror of death looming, change their minds. Thus it’s understandable how a doctor might say, “I’ve not been in that situation”—technically true, but emotionally harsh. When the question comes from a patient who has a terminal illness, it’s even more difficult because it brings the physician closer to contemplating her own death. Physicians too get anxious as their patients get sicker; doctors tend to avoid direct discussions of death in favor of focusing on scans, tests, and treatments.1
In a previous era when physicians comfortably assumed a paternalist role, the doctor’s job was to assemble the facts and provide a plan: “We should start chemotherapy this Friday. My assistant can set it up for you.” The patient’s voice was secondary. Now things are a bit different, but things haven’t changed that much. Patients are commonly offered a role in decision making, but doctors often make an offer that is hard to refuse, a choiceless choice. They might say, “Research suggests that for metastatic bile-duct cancer, chemotherapy with gemcitabine plus cisplatin offers the best chance of longer survival; it can give you more time—and in most cases it’s high-quality time. And if that doesn’t work for you, we have other options. Does that sound reasonable? If so, we can start this Friday.” Some physicians will try to build the patient’s confidence: “I’ve had two patients recently who did well on gemcitabine plus cisplatin in similar circumstances.” Some offer numerous options and provide exquisite detail about the clinical research upon which their recommendations are based. Giving a nod to patient autonomy, a physician might say, “Go home and discuss the options with your family and let me know what you’d like to do,” and if pressed, might even say, “I can’t really tell you what to do. Everybody’s different. The choice is up to you.” But the patient hears, “Chemo or die.”
Richard didn’t need to know more about risks and benefits for people in general; he needed wisdom in his unique set of circumstances. He felt adrift at sea without a compass, navigating without a map. Few people want to make such decisions alone, if for no other reason than it’s difficult to think through an issue logically and analytically when faced with our own mortality. Richard needed his physician not only to advise but also to help him understand his values and feelings, cope with uncertainty, sort out his options, and navigate his way.
I sometimes hear physicians say, “It’s up to you.” This allows them to remain aloof and displaces fear and uncertainty to the patient, leaving the clinician with a false sense of having been patient centered. Rather than promoting the intimate discussions that patients deserve in such circumstances, it disempowers patients by depriving them of the support that they need. They’re abandoned to their rights.2 No one wants a physician who is going to fall apart when facing the possibility of the death of one of his patients, nor do they want a physician who is Teflon coated, unmoved by suffering. Shared decision making is not only providing information; it is facing uncertainty together. That’s why it can be emotionally wrenching for physicians too. They have to work with the anxiety that they feel when facing uncertainty, enter into the unknown with the patient. Eric Larson calls it “emotional labor”—the emotional work that is part of the job.3
In these circumstances, patients want to have their voices heard; however, they exercise their voices less commonly than you might think. I can imagine several reasons why. Having greater choice means assuming a greater burden of responsibility. They’re overwhelmed by the sheer quantity of information. They may want to please the physician. Even well-informed, highly educated patients fear that by questioning their physician, they will get lower-quality care.4
These factors were weighing on me as I examined Richard’s abdomen. I needed time to think. I did a careful exam, not expecting to find anything new, but the exam served two other purposes. I knew that touch, in these circumstances, communicates solidarity. It also allowed me time to regroup, to think about what I could say next, something that would move him toward a decision that was right for him. I sat for a moment with the “What would you do . . . ?” question. I did not want to diminish his question by merely providing an opinion. I assumed that he was looking for understanding as well as clarity and wisdom, not just information.
I said, “Let’s walk through this.” I started with larger questions, hoping that within them lay the answer to the more specific question about treatment choices: “What’s the hardest part? How will you know that the choice is the right one? What in your life, right now, brings you joy? Where do you want to be living, and with whom? When will you know you’ve done enough? Is there anything about this decision for which you’d not be able to forgive yourself?”
After each question I was silent. Not trying to direct the conversation, I was just listening. The silences were just a few seconds each, but they had a quality of spaciousness, lending a deeper emotional tone to this discussion than the discourse of scans, tests, and drugs that had dominated most of Richard’s prior visits with his physicians. Some of the questions went unanswered. It was hard to be silent; it would have been easier to dispense information, recommendations, reassurances. But, by choosing to live with the questions rather than fill the space with mere answers, something else happened. Those five minutes led us to a greater sense of shared understanding. My just listening exposed me to his angst, not just his dilemma. I understood him better and he understood himself better.
“I’m willing to take the chance with the high-dose chemo,” he said. “But, I first need to ask whether I can switch to the low dose if it’s too much for me.” This decision was not “my” decision nor was it Richard’s; it was shared, having emerged through conversation, through being together; the decision was navigation more than negotiation. I was surprised; I had misjudged him. Somehow I thought he—as a scientist—would have decided otherwise, given the actuarial odds. He wanted the moon shot and was willing to tolerate the pain.
While this may have been the right choice for him, others would have chosen differently. He had enough information and advice, so I asked and didn’t recommend. Richard had few side effects from the chemo and enjoyed a reasonable quality of life until six months later, when the tumor again started to grow. He was soon in hospice; he felt that he had made the best choices under the circumstances; he had n
o regrets.
IT DEPENDS
Health planners Sholom Glouberman and Brenda Zimmerman describe decisions as simple, complicated, or complex.5 Richard’s decision was hardly simple, but Mary Ann’s was. A twenty-five-year-old software engineer with all of the typical symptoms of a urinary tract infection, she saw me the same day as Richard. She’d had a similar episode the previous year that resolved after a day of antibiotics. It didn’t take much to come to a diagnosis and prescribe an appropriate treatment. The choice among two or three potentially effective antibiotics was based on cost and convenience. I simply followed a recipe, something that barely requires medical training.
But what if Mary Ann also had a high fever and back pain that suggested it was more than a bladder infection? Let’s say she had diabetes or kidney stones. Or she was pregnant. This is more serious. The stakes are higher. The decision about which tests to order and which antibiotics to use and whether she needs to be hospitalized also depends on a myriad of social factors such as whether she has someone at home who could watch out for her and whether she has insurance coverage. This is now a complicated problem.
Glouberman and Zimmerman describe complicated problems as a bit like sending a rocket to the moon—you need more than a recipe. You need knowledge and formulas and the expertise to know how to consider a myriad of factors, from ambient temperature to wind speed to availability of personnel to guide the process. Still, the goal is clear and unwavering. There might be several possible trajectories, but all use the same principles of physics. Having sent a rocket to the moon once makes you more confident that you can do it again.
A typical complicated decision is the choice between lumpectomy (removing part of the breast) plus radiation, or a total mastectomy, for breast cancer. Although the treatments offer an equal chance for long-term survival, patients have to live with the trade-offs: convenience, quality of life, body image, and risks of recurrence. Each patient has to figure out what she wants, not what anybody else might want.6 Doctors can help patients choose, recognizing that the patient’s choice may differ from what they might want for themselves.7
Richard’s problem was beyond complicated—it was complex. In the words of economist Charles Lindblom, in the face of complexity people “muddle through.”8 They set an initial goal, then reorient and redirect their efforts based on evolving information. This is not necessarily a bad thing. Complexity means unpredictability and competing imperatives, and the goal may not be clear until having embarked on a path. At the outset of his illness Richard might have said—like most people—that he wanted to live longer, enjoy a good quality of life, maintain his dignity, and be with family and at home. Sometimes all goals are possible to achieve, but for people with serious illnesses, often they are not, and decisions—such as the decision to embark on chemotherapy—are provisional and conditional. If Richard had had a bad reaction to his first round of chemotherapy, it’s likely that he’d have changed course.
Complex decisions have always been part of medical practice. But, in the past twenty-five years, complexity has skyrocketed. In 1990 there was one medication to treat AIDS; now there are more than twenty-five that can be combined in many ways. Ditto for cancer. For nearly every disease I treat as a family physician, including diabetes, heart failure, and high blood pressure, the options have expanded exponentially, and the guidelines that purport to simplify them are ever changing.
In the face of complexity, the mind strives for efficiency. Too often—to paraphrase H. L. Mencken—we find an answer that is “clear, simple, and wrong.”9 Being mindful, in contrast, means taking in the full catastrophe and being reluctant to oversimplify;10 you use protocols and guidelines but aren’t constrained by them; you don’t indulge in an illusion of certainty when ambiguity prevails. You assign a diagnosis and continue to maintain an open mind. You know when to break rules and by how much. You know when to seek patient input that can lead to even better choices.
Part of what I love about my work—in family medicine and in palliative care—is that there is a map, but like the areas on navigational charts from the early explorers that blur into the background, it just doesn’t have enough detail. In a cookbook that I picked up in India, one of the recipes instructs to add “asafetida to taste” and “cook until nice,” not particularly helpful instructions if you’ve never cooked Indian food before. It feels that way in clinical practice sometimes. Even for common conditions, the answer often is “It depends . . .”11 Working with complexity requires what William James called “a large acquaintance with particulars”—details of patients and their lives—“that often makes us wiser than the possession of abstract formulas, however deep.”12 The particulars I deal with every day have to do with knowing each patient as a person, his genetics and habits, how he responds to illness, whom he lives with and whom he cannot live without, and how his wishes and aspirations affect his decisions. Finding out what makes patients tick is detective work, the kind of work that anthropologists and investigative reporters do, a human science, recognizing that every patient is, to some degree, an “n-of-1 study,” without a control group, and that you have to rely on intuitions and gut feelings. You need know how the patient’s world and your own world intersect.
PRACTICAL WISDOM
In medicine, knowledge of diseases, diagnoses, guidelines, and clinical evidence carry you just so far. When you’re choosing a doctor, you want one who has something that Aristotle called phronesis, loosely translated as “practical wisdom.” Phronesis is about choosing which actions will serve this patient best, right now. William James said, “All human thinking is essentially of two kinds—reasoning on the one hand and narrative, descriptive, contemplative thinking on the other.”13 Good decision makers use both.
Wise decisions in the face of complexity require the whole mind—the thinking mind, the sensing mind, the feeling mind—not just the logical/analytic mind. Just as Richard needed to feel his way through a complex situation, I needed to feel my way too; logic was not enough and the decision was not merely an actuarial task. Nor was it discovery in the usual sense; we did not add to the facts of the case. The decision was relational. We collectively made sense of a bewildering set of information and, to do so, invited multiple perspectives—mine, his oncologists’, his family’s, his own; we asked questions, built stories about how different choices might devolve, and created partnerships that enabled Richard to clarify his values, goals, and preferences—to exercise his autonomy. This was an intimate project, not merely tolerating ambiguity but embracing it.14
SHARED MIND
In my visits with Richard we moved—sometimes haltingly, sometimes directly—toward something I’ve come to call shared mind.15 Talking about a “mind” that was shared between us and yet is owned by neither of us is no longer the province of science fiction; as I described in chapter 5, shared mind is at the cutting edge of social neuroscience research. Social neuroscientists are now able to describe how two minds collaborate, how thoughts, emotions, and sensations are constantly shaped by the social relationships that surround us, so much so that thought is shared. “Hyperscanning” research—in which two individuals’ brains are scanned while they consider a shared task and communicate with each other—shows how the same areas of the brain are activated in both people to an astounding degree.16
I find the neuroimaging research provocative because it sets the stage for interpersonal mindfulness. Just as intrapersonal mindfulness is about knowing one’s own mind—one’s intentions, aspirations, goals, and foibles—interpersonal mindfulness is about knowing others’. In all human interactions, we read one another’s minds—our intentions, emotions, and thoughts. Doctors do it and so do patients. Mind reading is tricky, though. We make inferences about others’ thinking based not only on what we consciously see and hear, but also from information that is outside of everyday awareness; even the beginnings of a smile, a tone of voice, or a brief glance away can build or undermine a relationship (if you’re in doubt, read Auste
n or Proust). People also “read” and respond to each other’s pheromones—those smells that we give off that provide subliminal signals about attraction, anxiety, and anger.17 Our olfactory neural pathways go directly from the nose to the emotion-sensing parts of our brains, in particular the amygdala, which likely also affects our moods and the decisions we make. In this soup of neurotransmitters, deciding together in the face of complexity and strong emotions requires more than one mind. Richard needed to recruit additional help to come to a decision. In this case, two minds were better than one.
A STIFF NECK
I was an intern working in the pediatric emergency department when a young child came in with a high fever in the middle of a frigid January night, brought by understandably worried parents. A respiratory virus was going around. I was hoping that was all it was. I examined the child—irritable, crying. I had been taught that “irritable and inconsolable” equals a hospital admission, and I was relieved when his mother consoled him after a few minutes.18
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