The Good Doctor

by Kenneth Brigham

  The good doctor is a student of both the rules and the exceptions and is thoroughly aware of the difference. Like her fellow medical scientists, she values hard data, the analyzed experiences of groups of patients, but she also values anecdotes. If Portland, Oregon-based infectious disease specialist and science-based medicine advocate Mark Crislip really believes, as he has said, that the three most dangerous words in a doctor’s vocabulary are “in my experience,” one wonders how he would go about dealing with the health care of a unique human being, like you.137

  It is certainly true that the practitioner who bases general use of an intervention on experiences with a couple of patients (anecdote) rather than the results of controlled trials (data) is skating on very thin ice. Even though we know that, since we (both doctors and patients) are human, we still tend to be easy marks for a good story. In fact, if our brains hadn’t evolved in that direction, our species might not have survived so long. Anecdotes about the location of food or mortal danger must have given some early humans an advantage, and the risk of not believing those stories when they were true (false negatives) would have been greater than the risk of believing them when they were not true (false positives).138 Maybe that did something to how our brains decide what to believe. For whatever reason, it does seem as though there is something about stories which captivates us.

  Although scientists are human and, like everyone else, naturally inclined to believe anecdotes, they try hard to resist that inclination. For example, the common erroneous conclusion that event A causes event B because B is sometimes seen to follow A, especially as exploited by public figure testimonials, drives a thinking doctor crazy. We mentioned earlier the claim that vaccination causes autism, and that is a prime example of how this fallacy can be used by public figures to perpetuate a falsehood that a lot of people find attractive regardless of the science. As absurd as it seems, anecdote sometimes trumps data and the consequences are not always good. Before you let your evolutionary history get the better of your logic, you need to remember how bailing water from the sea is associated with the ebbing tide.

  Scientists in general are very hard on anecdotal evidence. They claim it is not based on facts; unscientific; often no more than a casual observation; and commonly just undocumented rumor.139 But the good doctor, even in this age of digitization, still sees value in carefully considered anecdotes, both those that she encounters first-hand and the ones that appear in the medical literature as case reports.

  Case reports are accounts of singular or rare clinical events that are thoroughly documented by qualified professionals. They are unusual things that actually happened and they are valuable because they document things that can happen, no matter how rarely. They are the exceptions, which is why they are so interesting. Sure, they’re interesting because unusual things always are, but they are also important because there is a chance, no matter how remote, that you might be an exception. Your doctor (assuming she is a good sort) never forgets that. She is an avid reader of case reports and enters them, with care, into the body of information that she uses to make clinical decisions. This doctor couldn’t be happier if you behave exactly as the population data predicts, but she is always alert to the possibility that you may not.

  After all, even a single event, an anecdote, is information, whether it’s typical of a larger group of observations or is one of a kind. If something is observed to happen only once, that doesn’t mean it didn’t happen, nor does it mean that it won’t ever happen again. Statisticians hate the single observation, the N=1, because they have no way to deal with it. They even have a device, Chauvenet’s criterion, for getting rid of those pesky outliers.140 But each of us is an N of 1 and there is always the possibility that we will turn out to be unlike most of our kind, an outlier, sooner or later. The good doctor plays by the rules when they work, but she is also ready to deal with the exceptions because she sees them every day as she goes about caring for real human beings with real problems.

  And this doctor is fascinated by your personal story. Remember Osler’s admonition, “Listen to the patient, he is telling you the diagnosis.” Patients’ stories of their illnesses have been the essence of medical care from the time of Hippocrates and probably earlier. Although they could do a lot of harm (bloodletting, leeches, etc.), about the only constructive thing a doctor could do for much of history was to listen and try to understand disease in the context of the individual person who suffered from it. But as the science of health gained credibility and prominence, the role of narrative in health care ebbed. Emphasis on a structured approach to evidence-based care and increasing demands for doctor efficiency threatened the art of the medical narrative—even of an adequate history—with total extinction.

  A lot of doctors in the trenches protested that this evidence-based thing often didn’t make complete sense when facing a real person with a real, immediate problem. The generalizations didn’t always fit the situation—the studies were done in different kinds of people, or the patient at hand had several complicating factors not dealt with by the evidence. These guys on the front lines know anecdotes; they face a clinic full of them every day. The term “personalized medicine” arose and numerous apologias appeared attempting with some success to reconcile the two approaches. They are after all complementary if, and only if, one’s response to the marshalled evidence is something like, “well maybe, let’s see how it fits with my patient in exam room four.”

  This recognition that who you are is inseparable from your medical condition has led to a resurgence of emphasis on the personal story as a critical component of care—narrative-based medicine.141 This is more than personalized medicine as the term is commonly used, more than even the intricate details of your biology. The most sophisticated wearable sensors won’t capture this. You will not find in your genome, even when it is completely sequenced, the complete story of how interactions between you, your illness, your life experiences, and your doctor affect how well you do. In How Doctors Think, Katherine Montgomery, professor of medical humanities at Northwestern University, writes, “The interpretive reasoning required to understand symptoms and signs and to reach a diagnosis is represented in all its situated and circumstantial uncertainty in narrative.”142 As Amy McGuire says, “There is no genome for the human spirit.”

  But the medical narrative is not just the patient’s story. There is a rich history of elegant narrative inspired by clinical medicine (think Chekhov, William Carlos Williams) that brings insight into how humans deal with infirmity. The good doctor has read a lot of that literature and other classical narratives of the human condition, and it influences how she perceives you, your illness, and her own place in that complex circumstance. There may be competent doctors who are not familiar with the fecund literary history of the profession, but such doctors are missing something important that can affect how well patients do. There is some evidence that including appreciation of medicine’s literary history in doctors’ training can cause “significant improvements in . . . patients’ health and quality of life.” The point is elegantly made by David Watts in his article in Perspective, “Cure for the Common Cold.”143 “Hippocrates said,” Watts writes, “that some patients get well only by the goodness of their physicians.” And further, “Imaginative literature shows the richness of human relationships not by trying to direct our thinking, as didactic lectures do, but by inviting us to experience lives outside our own.” The good doctor knows that and searches in that literature for those embedded clues “that teach us how to live with grace in a difficult world.” That’s a large part of the reason why she is the good doctor.

  Your doctor also has a personal story. She is well aware of what she brings to this relationship and pays attention to how her story might affect what goes on between the two of you. After all, the doctor has her own repertoire of biases, beliefs, attitudes, experiences, principles, and needs that can affect how your story registers and can threaten her objectivity if sh
e isn’t careful. Knowing that, this doctor takes the time and energy to reflect on the meaning and implications of her experiences; that’s how she continues to learn about the humanity of disease.144

  Your doctor may well have dealt with a serious illness of her own—experienced health care from the other side. That experience can seriously affect how a doctor practices medicine. It can awaken empathy, awareness of small things that affect a patient but that easily go unnoticed by one who hasn’t been there. The feelings that a doctor has when faced with a serious health problem can be surprising.

  Alfred S. Reinhart was a Harvard medical student in the 1930s when he developed subacute bacterial endocarditis, an infection on a rheumatic heart valve that at the time was uniformly fatal.145 He was cared for by the legendary physician Soma Weiss, who observed, “the emotional reaction of A.S.R. . . . was not fundamentally different from that of any other person suffering from a hopeless disease.” Sick doctors are, foremost, sick people. But the view from the other side, a personal experience with illness, can change how a doctor goes about caring for others. A close encounter with the real possibility of dying brings a new perspective that can refine a doctor’s sense of empathy for sick patients. Upon being told that he had prostate cancer, a physician friend wrote the following:

  “This is harder than I thought it would be. It is not a surprise. My father died of prostate cancer when I was fifteen. The disease is no stranger. My PSA has been on the rise for over a year. The damn thing was there . . . so this is not a surprise. But that doesn’t matter, doesn’t soften the blow of finality, irrevocability. I have cancer. I am not the same person I was fifteen minutes ago, before I had cancer.”146

  Our friend was not the same doctor after dealing with his own serious illness. He was a better one.

  Although science dominates a doctor’s education, doctors of medicine are different from scientists because they treat patients. The good doctor understands a lot about how science advances and values the results of rigorously done experiments. But she is not a human body mechanic; such a job would never have attracted her. This doctor considers herself a healer, a curer of physical disease, sure, but considerably more than that. She has tried hard to prepare herself for confronting what pediatric neurologist Philip Overby describes as “the human encounter with the sick and desperate, the brave and dying, the healed and grateful.”147

  This doctor learned somewhere along the way, probably not in medical school, to pay a lot of attention to narratives from history and literature, and to reflect often and intensely on the meaning of her own story. But she knows above all that the most important narrative in this relationship we call clinical medicine is yours. She hasn’t just read The Care of the Patient, Francis Peabody’s classic 1927 lecture to Harvard medical students, she really believes that “The good physician knows his patients through and through, and his knowledge is bought dearly. Time, sympathy and understanding must be lavishly dispensed.”148 She listens.

  She listens for the same reason that William Osler listened, to let you tell her the diagnosis. What in medical records is labeled history of the present illness is a detailed account of your symptoms arranged into a chronology of your illness. The doctor then compares the content and pattern of your symptoms to the many templates of known diseases, searching for the best fit. The history will suggest what tests might help confirm the diagnosis. It’s important to get the story straight if you want to get to the right diagnosis.

  But that is only part of the reason for you to tell your story. This is where your doctor gets to know who you are. Your story is not just your symptoms arranged in time but how you responded to the symptoms . . . Worried? Afraid? Confused? Terrified? And how did the people around you—family, friends, colleagues—respond? Did your symptoms remind you of previous experiences of either yourself or a loved one and if so how did those turn out? What about this illness interferes with the things you treasure most in life? This is a conversation between you and your doctor meant to make you as comfortable as possible revealing everything about yourself that might affect the course of your illness or influence the direction of your treatment. It will probably take more than fifteen minutes.

  So telling your story is both the path to a diagnosis and a conversation that lays the foundation of a doctor-patient relationship that will be invaluable as you and your doctor plan what to do and go about doing it. But there is more to it. There is pretty good evidence that just telling your story can make you healthier.

  Writing about prior traumatic experiences boosted the immune response of a group of New Zealand medical students to hepatitis vaccination.149 When they were asked to write about their stressful experiences, people with asthma had improved lung function, and people with arthritis had decreased disease activity. So your doctor listens to your story not only because it is essential for getting to the right diagnosis, helps establish the all-important doctor-patient relationship, and influences a course of therapy, but also because she also knows that narrative-based medicine may have some direct fringe benefits.

  Doctors who read this will say sure, it’s easy for you guys to talk about lavishly dispensing time, sympathy, and understanding, but you don’t have a practice manager breathing down your neck, and you’re ignoring how lavishly one must bestow time on the electronic medical record. There just isn’t time in an active practice today to do this sort of thing.

  A doctor with appropriate skills may not need to spend all that much time with you to get the job done. A 2002 British Medical Journal report says that less than one percent of patients of physicians trained in active listening needed more than five minutes of spontaneous talking time.150 So the thinking doctor has learned the necessary skills to practice narrative-based medicine and tries to be as efficient as she can be doing it, but she takes whatever time is needed because she believes Francis Peabody’s claim that it is “that personal bond which forms the greatest satisfaction of the practice of medicine.” That’s why she wanted to be a doctor in the first place, and she tries hard to remember that in spite of pressures that try to push her in another direction.

  The electronic health record (EHR) has turned out to be one of those pressures. The EHR was supposed to give your doctor more time to be the kind of doctor she tries to be, but although it has some positives, in its present form it is a time and effort sink that can make her job harder.

  It wasn’t supposed to be that way and the EHR has done some good things—brought some organization to the medical record and detected some errors in ordered treatments. But that has been at the price of pulling the doctor away from the people she ought to be spending time with. In the Journal of the American Medical Association, Jayshil Patel writes that since using the electronic record in one hospital, the medical house staff spend twelve percent of their day with patients and forty percent of their time in front of a computer.151

  In many clinic exam rooms, the center of attention has shifted from the patient to a computer keyboard and screen mounted on a mobile base that trails the doctor around like a trained puppy. So far, the good doctor has resisted admitting a computer into her exam room; she is jealous of that sacred space reserved for her and her patient. But she pays a big price for that choice. She has to spend a lot of her own time entering all of her patients’ information into the database. She can’t bill for that and it surely doesn’t do much for the quality of her private life. It is no surprise that the price is just more than many doctors are willing to pay.

  Solutions have been tried, including the use of a scribe to enter the data while the doctor sees the patient.152 So now the sacred exam room space is violated with not only an ugly machine but also with a stranger who has nothing to do with what is happening except to record it; not ideal would be a serious understatement. If the enormous potential of the EHR and other computer-related enhancements of medical practice is to be realized, it will be necessary to do some serious rethinking of
the whole approach.

  A contemplative doctor is well aware of the difference between the rule (evidence) and the exception (anecdote) and values them both in making decisions about your personal care. Canadian communications expert Jilleen Kosko and her colleagues at the University of Alberta ask whether (to paraphrase the title of their paper) evidence-based medicine and the anecdote are uneasy bedfellows or an ideal couple?153 They can probably be either depending on the situation and the people involved, but both are critical to the practice of good medicine. The relationship between evidence-based and narrative-based medicine may have some rocky times but this is not likely to be a short term affair.

  Your personal story is critical to your health care. The doctor doesn’t tell you what is wrong or right with you, you tell the doctor that. If your doctor is good at what she does, she listens. She listens very carefully. So you best pay attention to yourself. You’d better be in touch with who you are and what you are feeling, get your story straight. Most likely your health care will never be any better than your story.

  Anecdotes can be what connect you to the data. That connection needs to be made although sometimes it may be too tenuous to be of much use. What if you’re a Black Swan? Well, that’s up to you and your doctor to figure out.