When Doctors Don't Listen - Softcover

One
 

From Shamans to Black Boxes
Arthur Coates is a partner in one of Boston’s most prestigious law firms. At fifty-seven, with more than thirty years of malpractice law under his belt, Arthur is known in the business as being “sharp as a tack, with the instinct of a killer whale.” Today was the culmination of a multibillion-dollar lawsuit involving a local hospital and several of its staff. It was just before lunchtime, and he was cross-examining the last witness when a most remarkable incident occurred.
“Were you aware that my client had a previous history of heart disease?” Arthur asked the witness. He was pacing the room with a steady, deliberate gait, a style characteristic for him, noted his younger colleague, Tim Simcock, who was watching from gallery.
As the witness was about to respond, Arthur spoke again, this time appearing to direct the question to the judge.
“Were you aware of my client’s previous history of heart disease?” he asked.
What a strange strategy to repeat the question like that? Tim thought. Maybe this is how Arthur does things; perhaps Tim should take notes on Arthur’s style. The opposing attorney objected, but the judge motioned to the witness to answer anyway.
“I don’t recall,” he stated.
“Did you know about my client’s heart disease?” Arthur asked again, this time to no one in particular. “Were you aware that my client had suffered previously from heart disease?”
The opposing attorney got on his feet, yelling, “Objection—asked and answered!” but Arthur went on asking the same question several more times. Tim saw that Arthur’s gait had sped up. It wasn’t unsteady, but he wasn’t walking in any particular direction. Could it be that the great Arthur Coates couldn’t remember what else he had to ask? Tim stood up to approach the bench and request a sidebar. As he got closer, he saw that beads of sweat were pouring down Arthur’s face. The judge was banging his gavel, but Arthur appeared to take no notice. The entire room was watching Arthur, transfixed. There were murmurs. What’s happening? Is it a trick? Is Arthur Coates having a breakdown?
“There is something wrong!” Tim shouted. “He needs a doctor!”
A recess was called. As it happens, there was a doctor in the courtroom—the one who Arthur had just been questioning. The doctor stepped from the witness box and cautiously made his way over to his former interrogator, who was now crouched in the middle of the courtroom like a vanquished gladiator, his head buried in his hands.
“Are you OK? Do you need help?” In a curious reversal of roles, it was the doctor asking the questions.
Arthur shook his head. “Do I know you?”
How bizarre! This was one of the most sought-after minds in his profession, and he couldn’t remember a key witness? But not only couldn’t Arthur recall any details of the case, he didn’t know that he was in court or that the year was 2012.
“I think he may be having a stroke,” concluded the doctor, a gynecologist by training, but familiar enough with basic neurology to know that sudden memory loss was potentially quite serious. “Someone call for an ambulance!”
*   *   *
“Who are you again?” Arthur asked Tim quizzically as they rode together in the back of the ambulance.
Tim sighed. It was the third time Arthur had asked him this question since leaving the courthouse. “Tim. We’ve worked at the same firm for the past eight years. We golf together. Our wives are in the same book club.”
“Oh,” Arthur replied. To Tim, it looked as if his colleague registered what he just said, but a few minutes later, when he asked Arthur if he remembered him, Arthur shrugged. He was apologetic, but really—he just didn’t remember.
This was how Arthur Coates presented to us in the ER. On the surface, Arthur appeared like any other high-powered lawyer: middle-aged, distinguished-looking, with a dark power suit and blood-red tie. He feels great, he said. And yet he had no clue what day of the week or what month it was. He nodded when he’s told that he’s at a hospital in Boston, but a few minutes later, he no longer remembered this. When he was asked to recall three objects—a pencil, a lamp, and a curtain—he could repeat them back instantaneously, but a minute later, he could not remember any of them. Interestingly, though, he knew that he was born in 1953 in Omaha, Nebraska. He told us that his childhood best friend was a scrawny kid named Auggie and that his first dog was a yippy tan Yorkshire terrier.
The rest of Arthur’s history and physical exam was unremarkable. His wife, Amy, arrived and confirmed that Arthur was generally healthy. He’d never had anything like this happen before. In fact, he hadn’t missed a day of work in his life. He took no medications other than a baby aspirin each morning, and he went to the gym three times a week. He hadn’t been traveling to any exotic locations, and nobody around him had been sick. His vital signs were all normal, as was his vision, hearing, speech, and gross motor and sensory function. He had normal reflexes, coordination, balance, and gait. When asked to perform basic addition and subtraction or spell “W-O-R-L-D” backward, he seemed to have no difficulty whatsoever.
Could the great Arthur Coates have had a nervous breakdown? Tim wondered. It had been a stressful few weeks leading up to the trial, and this morning’s proceedings had more than their share of tense moments. “But this is a guy who’s argued dozens of cases like this! It’s just not like him to react this way!”
*   *   *
Arthur’s behavior may seem bizarre, but he was actually exhibiting classic signs of a disease called “transient global ischemia.” First described in the 1970s in a case involving a farmer who drove a tractor onto a busy highway because he could not remember who he was or where he was going,1 transient global ischemia is characterized by a sudden loss of recent memory. Patients tend to recall deeply encoded, distant events like childhood memories, but not recent happenings. Other than memory failure, they do not have any other neurological deficits. The cause of this ailment is unknown, though it is more common in males than females, and there is some association with a prior stressful or emotional event. The symptoms are self-resolving, usually completely disappearing within twenty-four hours.
Because transient global ischemia is so highly classic and specific, afflicted patients can be sent home to await symptom resolution as long as the caretakers at home are comfortable taking care of them. Twenty years ago, Arthur could have been diagnosed based on his clinical presentation alone. No further workup would have been provided, because it was clear what he had. Today, even though his diagnosis could have been made just by hearing his story, the doctors taking care of Arthur were petrified of him going home to recover on his own. Our discussion in the ER went like this: what if we were missing something bad, something really bad? What if he was having some type of stroke that we hadn’t thought of? Some unusual metabolic disease?
Never mind that Arthur exhibited none of the signs concerning for this smorgasbord of bad diseases. Yet, the resulting management was predictable: to be “on the safe side,” Arthur was told he needed to go through the entire battery of tests. So he got a head CT to make sure he didn’t have bleeding in his brain. His CT was normal, so an MRI was ordered to look for a more subtle stroke. In the meantime, his blood tests, chest X-ray, and EKG also came back normal and offered no explanation for his symptoms, so the neurologists were called to see Arthur. After several hours of consultation, and with absolutely normal tests, their conclusions were similar to ours: “Symptoms are consistent with transient global ischemia,” they wrote, “but we cannot exclude transient thromboembolic phenomenon or atypical seizure activity.” They recommended further studies to “rule out” these remote possibilities, not acknowledging the difficulty of proving a negative.
So Arthur waited in the hospital overnight. By later that evening, he was pretty much back to normal. But there were still more tests to do. Arthur stayed overnight to have brain wave tests to make sure he was not having a seizure (he wasn’t) and an ultrasound of his heart to confirm that his heart valves were normal (they were). Finally, late the next evening, he was discharged home, some thirty-six hours after Tim and the ambulance crew brought him in.
Why is it that Arthur Coates stayed in the hospital at a cost of tens of thousands of dollars in studies, procedures, and specialists’ time, when he could have been sent home in the first place? Why did we need blood draws and radiation to conclude that he didn’t have diseases that he never showed signs of? Why couldn’t doctors have provided the reassurance of both the diagnosis and the expected course of his illness, sparing him and his family many fretful hours worrying about heart attacks and strokes and seizures and whether they would ever have the old Arthur Coates back?
We were there—we can tell you why. It’s because doctors today no longer think that patients can be relied upon to tell the history of their illness. It’s because “ruling out” bad diseases has taken precedence over making a diagnosis. It’s because we have elaborate tests available at our fingertips, and both doctors and patients have an unshakable belief in technology. Never mind that the fancy tests add little value, especially when used to exclude diagnoses that weren’t likely in the first place.2 Never mind that the procedures may actually impose risk or cause actual harm.
Diseases have always existed, but modern technology has not always been available. To explain how far we have come, for better and for worse, we present a brief history of medical diagnosis. We identify four periods, what we term the Four Eras of Diagnosis. As you read, think about the three patients you’ve been introduced to: Jerry the mechanic with chest tightness, Denise the housewife with vomiting and diarrhea, and Arthur the lawyer with sudden memory loss. How would the diagnostic process been different in each of the four eras? Would their care have been better then or now? Would yours?
*   *   *
Let’s call the First Era of Diagnosis the “Era of Spiritual Healing and Magical Thinking.” Records dating back thousands of years have described shamans, faith healers, and their equivalents as healers who provided what would now be called medical care through spiritual means. Virtually every ancient society had one such person or a designated group of people who was said to possess the magical powers to heal—and as a prerequisite to that, to diagnose.3
Many of these ancient faith healers had knowledge of local plants and herbs and made liberal use of medicinal concoctions in their practice. Others utilized the power of chants and group prayer. The Peruvian Amazons believed that spirits would teach their shaman, the “curandero,” a song; the shaman’s job was to learn the song in order to figure out the specific illness.4 In other cultures, the key to diagnosis lay in the identification of the appropriate evil spirit, and the faith healer’s job was to possess the body of the ill and chase out the spirit causing harm. In the Hmong culture, the healer, called the “Shi Yi,” was said to restore health by calling the soul of the sick from travels with bad spirits and back into the human body.5
This form of healing, grounded in belief of spirits and magic, seems worlds apart from medicine as we know it today. But there is something of this First Era that we still find in modern medicine: the notion of implicit trust. Then, as now, those who are sick entrust their health and well-being to a designated healer. In ancient times, illness was a literal black box: you tell your healer your problems, the healer shakes a black box, and out comes a solution of some kind. As a faithful member of the community, you trust your healer and accept the outcome.
Why do we even mention this era when we can take it at face value that few of us would prefer to live back in the land of shamans and black boxes? We discuss it because this era is not entirely in the past. Alternative healing methods are actively practiced today. Many societies continue to rely on shamans and faith healers. In the United States, 74 percent of patients report that they use complementary and alternative therapies in addition to Western medicine, including herbs and “new age” medicine techniques such as qi gong spiritual healing and reiki energy healing.6
It’s interesting to note that these alternative healing modalities continue to emphasize the patient first and foremost. Making a diagnosis requires attention to the individual and his stories. In addition, because healers are typically from the same community as their patients, cultural context is necessarily taken into account as part of the diagnostic process. In all cases, a diagnosis (whether correct or not) is given, with treatment tailored to fix the problem identified. Perhaps as a result, these forms of treatment result in total commitment from the patient and their families, and adherence to the treatment regimen tends to be very high.
With the dawn of recorded history came the Second Era of Diagnosis, which we call the “Era of Early Empiricism and Disease Classification.” As far back as 2000 B.C., the Egyptian scholar Imhotep wrote the medical textbook known as the Edwin Smith Papyrus.7 This is the first known text in the ancient world to describe in detail a method of diagnosis whereby each disease has corresponding symptoms and physical findings.8 A subsequent Babylonian text, The Diagnostic Handbook, introduced the role of empiricism and logic in diagnosis, focusing on rules for predicting when and how a constellation of symptoms and signs represented a particular disease state.9
The Father of Western Medicine, Hippocrates, was the preeminent physician of his time, and his works epitomize the diagnostic approach in this Second Era. Hippocrates was deeply invested in describing the natural history of illnesses—how symptoms came together and how they progressed over time. For example, he was one of the first to describe epilepsy as a syndrome of uncontrolled, recurrent seizures. It was not known what caused it or how to prevent the seizures from recurring (many contemporaries continued to believe that they were a form of “possession” by evil spirits), but Hippocrates noted that lying the patient flat on the ground was beneficial (at the very least, to prevent the patients from further injuring himself or others). Hippocrates also recognized the syndrome of persistent cough, fever, and wasting as pneumonia, which he described as a contagious disease because family members and close contacts appeared to contract it. Unfortunately, this was often a fatal diagnosis, as there was no cure at the time.
Though Hippocrates’s focus was on disease description and not on diagnosis per se,10 his detailed writings allowed for progress. Patterns of symptoms formed the basis of disease classification, and pattern recognition became the basis of diagnosis and medical reasoning. In Hippocrates’s time, few other diagnostic tools existed; moreover, the ancient Greek taboo against dissection meant that little was known about the anatomical basis of disease. Under the tutelage of a master physician, students would learn to recognize common illnesses by learning about and then observing patterns of signs and symptoms. Over time, new diseases would be described and their natural historie...