Morgan Amanda Fritzlen was a college student in her midtwenties. Juliet Mavromatis was an internist in her midforties. Their paths crossed at the leafy campus of Emory University, where Juliet was an attending physician and Morgan Amanda, a linguistics and health communications undergraduate. Morgan Amanda readily acknowledged she was a “challenging patient,” and Juliet would not have disagreed.
Morgan Amanda’s childhood had been plagued by all sorts of odd illnesses and injuries. At various times her hands and feet ached, then her ankles and knees, then her shoulders and her neck. The pediatricians reassured her parents that these were growing pains, or caused by a viral syndrome, or remnants of a childhood injury. But injuries occurred with everyday activities. Headaches, dizziness, and lethargy were constant companions and it was difficult for Morgan Amanda to keep up with other kids at the schoolyard. It felt like she was struggling to swim against the stream of life, though her smiling exterior kept this reality private.
She was blessed with long, delicate arms and legs that made her perfect for ballet, but those same lanky limbs seemed to preternaturally twist and trip, causing multiple dislocations. “I’m probably the only person who’s ever fractured her arm falling up the stairs,” Morgan Amanda told me, with a laugh. She managed to twist her ankles while walking on ordinary flat ground. “I was all arms and legs,” she said, “graceful but clumsy and accident-prone, if you can imagine such a combination. When I was born my father said I resembled a string chicken!”
Aches and pains occurred in strange locations. Her scalp hurt, for example, whenever her mother brushed her hair. Home movies showed her tugging at her tight bun during ballet recitals. Visual problems necessitated more than a dozen surgeries on her eye muscles. She seemed to catch every bug that went around, be it viral, bacterial, fungal, or parasitic, and could be bedbound for weeks. Various gastrointestinal maladies bedeviled her: reflux, malabsorption, pancreatitis.
Morgan Amanda was always underweight and pale, much more so as she grew older and her list of symptoms and accompanying medications grew longer. But she never stopped growing. At age twelve she shot up seven inches during a single school year, and was five foot nine at the end of seventh grade. By age fifteen she was just shy of six feet tall, and it became evident to her and her family that these varied symptoms were not separate issues, but probably part of a larger syndrome. The problem was that they didn’t fit into any classic textbook illness.
Her parents took her on the first of several cross-country tours of specialists—from UCLA to Johns Hopkins—to figure out what was going on. Various diagnoses, surgeries, and treatment regimens came and went. Her list of pills lengthened. But her joints continued to ache and swell, and her energy level was nil.
Double vision, headaches, kidney infections, and bleeding ovarian cysts plagued her. Severe anaphylactic allergic reactions meant she had 911 on speed dial and epinephrine injections were stocked in her purse. Hand tremors and muscle weakness made gripping objects a challenge; four cell phones met their untimely deaths on the floor as a result.
By the time Morgan Amanda—now just over six feet tall and slender as a reed—arrived at Emory University, the working diagnosis was juvenile rheumatoid arthritis (RA). This inflammatory disease is famous for causing widespread and protean effects on the body, and could explain some of her strange conglomeration of symptoms. It wasn’t a perfect diagnosis but it seemed to be the best answer that medical science could muster.
The simpler medications for RA weren’t working and her doctors steadily ratcheted up the heft of her meds. Sometimes her symptoms were transiently alleviated, but always they returned. At the end of her sophomore year Morgan Amanda was receiving powerful immune modulators—intravenous gamma globulin and rituximab—that were infused like chemotherapy. She couldn’t get them at her private rheumatologist’s office because of her allergy to the latex gloves used there. The only place was at Emory, but because her rheumatologist was not part of the Emory system, he couldn’t write the actual orders for the infusions. It fell to her primary-care doctor to write these orders.
Writing orders for chemotherapy-type infusions is not a mere technicality; it implies taking full clinical responsibility for big-gun treatment. Such treatments are generally the purview of specialists such as rheumatologists or oncologists, but Morgan Amanda’s first primary-care doctor at Emory, who considered herself a bit of a cowboy, was willing to do it.
Happily, these treatments seemed to help. Morgan Amanda’s symptoms were finally improving and her joint pains were calming. Less than a year into this treatment arrangement, though, her primary-care doctor moved to another state. Normally, when a doctor leaves, her patients are swiftly transferred to another doctor in the practice. But in this case no other internist at Emory was willing to assume Morgan Amanda’s care. Her medical chart was intimidatingly dense. She had twenty-six diagnoses and was taking more than thirty medications. The list of meds to which she was allergic took up its own full page. She’d had seventeen major operations and had consulted with more specialists than anyone could count. On top of that there was the fraught issue of taking responsibility for the chemotherapy-type infusions.
Morgan Amanda was also strongly opinionated and ferociously well read on her conditions. She was majoring in health communication at Emory and was considering medical school, so handily mastered the clinical terminology and medical issues. She read medical journals avidly and researched her conditions thoroughly, and so came to the table with very definite opinions on the available treatments. Her sweet, friendly disposition and demure southern manners masked a steely resolve. She knowingly offered me the understatement that she’s the type of patient who “arrives with baggage.”
Depending on your vantage point, Morgan Amanda was either a “difficult patient” or an “empowered patient.” Whichever the case, her medical condition was immensely complicated and would require an inordinate amount of work. No primary-care doctor wanted to take on this thankless task.
As one doctor after another declined her case, Morgan Amanda worried that she might be stranded without a primary-care doctor. Her mother in Chicago began calling the Emory Clinic administration, pressing the severity of the issue. The clinic director finally persuaded a doctor to take the case. Forty-eight hours later that doctor withdrew. The clinic director tried to persuade another doctor, who considered it, then turned it down because of the chemotherapy-type infusions.
The situation became so dire that the director himself had to temporarily assume medical care until a permanent doctor—one with enough experience and flexibility for this case—could be found. The desperate director finally turned to Juliet Mavromatis, a vivacious and energetic doctor with ten years of clinical experience, and begged her to take the case. Juliet was hesitant. Beyond the overwhelming clinical complexities of the case, the idea of taking responsibility for the infusions did not sit right with her. Not to mention that her practice was full and was officially “closed” to new patients. But she couldn’t bear to see a patient abandoned. After some hesitation, she agreed to take this new patient into her practice.
I first encountered these two exceptionally smart and strong women when I was researching my previous book, What Doctors Feel. I’d been considering a chapter on friendship between doctors and patients, and so was trolling the Internet for relevant research or personal experiences. There wasn’t much, but I did stumble across a blog that Juliet had written in which she touched upon the issue of “friending” patients on social media. I was on sabbatical in Israel that year working on the book, so I had several trans-Atlantic phone conversations with Juliet about the ethical and practical issues of friendships outside the clinical setting. In our conversations she mentioned one patient in particular—a patient with an extraordinarily complex medical history. She and the patient disagreed, often vehemently, about the treatment options, yet they also struck up something of a friendship. But Juliet was very careful not to reveal the patient’s name or any particulars of the case.
Between phone calls I read more of Juliet’s blog, and I noticed frequent comments posted by someone who was clearly a patient of Juliet’s. The comments were cogent, thoughtful, and detailed. As I read through them I realized that this might very well be the patient Juliet had alluded to. From the nature and content of the comments, it was clear that this person certainly wasn’t shy. She used her full name publicly and was openly sharing her own experiences. She offered advice and support to other patients but was also willing to reflect critically on herself.
I asked Juliet if she might convey a message to this person: that I was intrigued by the comments she’d posted and wondered if she might be interested in talking. Within days I received an enthusiastic letter from Morgan Amanda. She loved the idea of sharing her medical experiences, especially if there was something that might offer insights for others. Thus began a series of lengthy phone conversations, intricately scheduled to account for her college class schedule, her exams, and her numerous and far-flung medical appointments, as well as the time difference between Georgia and Israel. Some phone calls took place near midnight for me; others were early in the morning.
Coming from concrete Manhattan, I relished any opportunity to take in fresh air. The sun seemed to rise earlier in Israel, so for those early-morning calls, I’d drag a kitchen chair out into the yard and have our conversations while I sat under the shesek (loquat) tree, which was about as far as the phone reception would allow. And if I stretched my neck just so, I could catch a cerulean sliver of the Mediterranean Sea while we talked.
Morgan Amanda was an energetic and detailed storyteller. She remembered clearly how nervous she was at that first visit with Juliet on a humid Friday morning in early August. She was painfully aware that there were no other primary-care doctors willing to take her case. If she and this new doctor didn’t connect—she couldn’t even bear to contemplate what then. “I knew I was coming in with a reputation. I even dressed strategically to make a good impression,” she recalled with a slight self-deprecating laugh. “But I felt stuck because I had no other options. I needed this to go well.”
Morgan Amanda found the doctor to be nice, very professional, maybe somewhat shy. She gripped her copy of Virginia Woolf’s The Years in her lap during the opening pleasantries, her long legs dangling nervously over the edge of the exam table.
Juliet recalled that first meeting going well. She found her new patient intelligent and pleasant. Juliet noticed the novel immediately, and Morgan Amanda mentioned that Virginia Woolf was her favorite author. When Juliet asked which of Woolf’s books was her favorite, Morgan Amanda realized she’d stumbled upon a serious reader.
“To the Lighthouse,” she replied, but added that The Hours—Michael Cunningham’s homage to Woolf’s Mrs. Dalloway—was also a favorite. Juliet had recently read The Hours in her book club. They quickly fell to discussing the intertwined narratives of Cunningham’s novel, and how Woolf’s characters transferred seamlessly to the present time.
Juliet liked Morgan Amanda’s sharp wit and found that her pointed questions were stimulating rather than annoying. But they did have their disagreements. Juliet felt the combination of gamma globulin and rituximab infusions was overkill for her arthritis symptoms, which were under better control at the moment. More to the point, she wasn’t convinced that RA was the diagnosis—or that RA was the only diagnosis.
Years before, one doctor had suggested offhandedly that Morgan Amanda might have a rare connective tissue disorder—either Ehlers-Danlos syndrome or Marfan syndrome. Morgan Amanda had even seen a geneticist by that time, but had been told that these illnesses were unlikely, and that in any case the available genetic tests weren’t specific enough. Juliet seized on that, pointing out that a tall, lanky frame and history of eye problems were much more consistent with a connective tissue disorder than RA, and that she should consider pursuing genetic testing again.
Morgan Amanda found herself growing angry. It wasn’t that she disagreed with the idea of genetic testing, but she felt she was being pushed to defend her illness to this new doctor. The fact that her symptoms were improved at this moment didn’t mean she did not have RA. For a new doctor to make such a determination after just one examination seemed presumptuous. It was ignoring the complex clinical history in her chart. It was ignoring the fact that these “overkill therapies” might in fact be the very reasons her symptoms were currently in check. She sensed that Juliet was sizing her up as a difficult patient.
What makes a successful connection between doctor and patient when they first meet? Most patients seem to know it when they see it, even if they can’t quite articulate the specifics. Before the visit is even over, most patients have a clear sense of whether this is a doctor they feel comfortable working with. But think about that for a moment. We would hardly buy a house or a car based on ten minutes of exploration. We wouldn’t accept a job or make a financial investment with such scant information. Yet somehow we decide to invest our health in someone based on a single short encounter.
What is it that patients look for in doctors? When searching for a doctor, most patients still use word-of-mouth recommendations.1 There is a plethora of doctor rating sites, as well as the many “quality measures” that are published online, but most people have trouble making sense of this jumble of information. This is partly because the data are disjointed. But mainly this is because most of us don’t make decisions based on rational facts.
Decades of research by psychologists Daniel Kahneman and Amos Tversky has shown that humans do not act in the rational way that logic would suggest.2 Patients may in fact research their prospective doctors’ board certifications or mortality rates or blood-pressure control rates, but they don’t necessarily use these numbers in choosing a doctor.3 They tend to go with a doctor whom they feel they can trust.
In theory, this seems ridiculous—making a potentially life-and-death decision based on a gut feeling rather than facts. But when you examine it more carefully, there actually is a logic embedded in there. So much of the data—hard facts that they are—are free-floating and exist out of context. What does it mean that only 40 percent of Dr. X’s patients with diabetes have their glucose under control? Well, it may mean that he does a terrible job with diabetes. Or it may mean that he has many elderly patients for whom “controlled” glucose might be harmful and so he appropriately allows their sugars to be higher.
Or it may be that he maintains a good relationship with those very difficult, complicated patients who can’t or won’t take their insulin. These are the kinds of patients who often bounce from one doctor to another. The fact that they stay with Dr. X suggests he’s doing something salutary that maintains their trust. This keeps his patients engaged in the medical system but definitely makes his numbers look bad.
Perhaps Dr. Y, whose stats say that 80 percent of her patients with diabetes have their glucose controlled, is indeed a better doctor than Dr. X. Or maybe she is impatient with those who don’t take their meds. The “difficult” patients find her off-putting and drift away, leaving her with patients who dutifully take their meds and furnish her with more-impressive numbers.
Does the surgeon with the lowest mortality rate achieve that sterling number because she’s a technical genius or because she refuses to operate on patients with complex medical conditions? Is the doctor who is rated as “inefficient” a disorganized mess or does he spend extra time with each patient and so sees fewer patients per hour?
All of these “quality measures” simply measure what is easy to measure, and have only tangential connections to what is truly good medicine. So it may ultimately make sense that most patients do not make decisions about doctors based on these numbers. Most people want a doctor who is baseline competent, but most important, who will listen to them.4
The greatest fear of patients is that they won’t be heard by their doctors and thus not get the medical care they need. From the get-go, it’s not an even playing field and patients know that. They are aware that they are at a disadvantage when it comes to medical knowledge and experience. This is layered on top of the intrinsic power dynamics of a system that largely puts the doctor in control. Additionally, the whole interaction takes place on the doctor’s home turf, not the patient’s. The doctor gets the home-field advantage, at ease with the intricacies of the medical setting that, for most people, is only a few shades more alluring than an IRS audit. And of course it’s the patient, not the doctor, who is doubled over in pain during the conversation, or who is nervously awaiting the CT scan report that will reveal whether the cancer has returned. All handicaps to the visiting team . . .
Then there is the time crunch, or should I say the time mismatch. The patient may have waited weeks or months for this appointment and so comes with a spreadsheet of accumulated concerns. He or she is desperate to pack every last issue into these precious few moments with the doctor. The doctor, on the other hand, is running late, is under pressure to be efficient, knows there is a pack of patients growing antsy in the waiting room, and has been given more work than can possibly get accomplished in the allotted time. Add to the mix a paper gown the heft of a Kleenex, plus the ambient temperature of Vladivostok in February, and you’ve got the perfect recipe for a potential disaster.
Patients sense that they have a singular and fleeting window to make their case—in terms of both actual minutes on the clock and legitimacy of illness. There is the need to convince an often-skeptical medical profession that they are really and truly ill, deserving of the doctor’s time and of the medical profession’s imprimatur of legitimacy. This is especially true of patients with vague complaints, especially if they appear outwardly healthy. Even Morgan Amanda, who had a five-pound chart documenting her ailments, found this a challenge because her symptoms didn’t fit into any easy diagnostic category and because on the surface she looked relatively well.
Given the freighted nature of the initial doctor-patient meeting, the factors working against a smooth interaction, and all the competing tensions for both parties, it is almost astounding that this weighty encounter is mediated by the most rudimentary technology: a conversation. The physical exam and the subsequent tests do play a role, but the conversation between doctor and patient—the medical interview—is the single most important diagnostic tool in medicine. Not only is it the tool that yields the diagnosis, or at least focuses the path toward a diagnosis, but it is the tool that establishes the doctor-patient relationship, which is critical in the success of navigating medical care—something that Morgan Amanda and Juliet were quickly discovering.
So what happens when a doctor and patient talk? A typical interview, as it’s referred to, begins with the doctor asking the patient the reason for the visit. This is the cue for the patient to begin his or her story.
I deliberately use the phrase “begin the story” because that is how most patients conceptualize their sense of becoming ill. Like any story, there is a beginning, middle, and end. There’s a main character—the patient—and a definite plot (not to mention plenty of tension, conflict, and crises).
But this is not how it’s traditionally viewed in medicine. The initial words of the patient are formally categorized as the “chief complaint.” This chief complaint is the opener of the standard medical history and is meant to be a concise capture of the patient’s main issue.
Already you can probably see the inevitable clash between doctor and patient. The patient has a story to tell and the doctor is scoping out a chief complaint. So it’s not surprising that doctors typically interrupt patients within twelve seconds.5 And it’s not surprising that this is one of the biggest issues for patients. Being cut off is exceptionally frustrating because it makes clear that you aren’t being listened to. It certainly isn’t the most auspicious way to form a productive doctor-patient relationship and it’s also a setup for medical error, but more on that later.
Morgan Amanda and Juliet navigated their new relationship, each eyeing the other somewhat warily. The patient wasn’t sure if her new doctor was going to take seriously her illness and the importance of the gamma globulin and rituximab infusions. The doctor wasn’t sure if the patient was going to be more work than she’d bargained for—someone who consumes vast resources of time and energy.
Morgan Amanda insisted she would be continuing the treatment recommended by the rheumatologist for her RA. She thought Juliet was being dismissive and somewhat paternalistic. But she kept the tenor of the conversation friendly and casual because she knew that she needed Juliet to write the treatment orders for the gamma globulin and rituximab infusions.
Juliet thought Morgan Amanda was being defensive and somewhat stubborn. But she kept the tenor of the conversation friendly and casual in turn because she knew that she needed to maintain a good working relationship with a patient who held strong—and controversial—ideas about her medical care.
After that first visit, Juliet reluctantly agreed to take on the role of prescribing the infusions. It did not sit well with her but it seemed that her patient had no other option.
Despite their disagreements over the infusion treatment, each found she rather liked the other as a person. They scheduled monthly visits because of the sheer enormity of the medical issues. At the beginning of each visit doctor and patient chatted easily, catching up on books they’d read, movie recommendations, schoolwork, Emory politics. It was only when they got to the infusions that they disagreed. There was tension between them as Juliet worried that this was a monumental medical mistake and Morgan Amanda worried that Juliet might back out at any moment.
Things went okay for the first few months. Then, during an infusion of gamma globulin in October, Morgan Amanda’s body erupted in hives. Her eyelids, lips, and throat began to swell and very quickly it became difficult for her to breathe. As her blood pressure bottomed out, the staff quickly injected her with epinephrine and steroids, running large boluses of intravenous fluids into her IV. The episode of anaphylaxis slowly resolved, but now gamma globulin had to be added to her extensive list of life-threatening allergies.
In the months that followed, the swelling of Morgan Amanda’s joints became more erratic and more severe. Her energy level plummeted, and there were days at a time when she was unable to get out of bed. Cooking, shopping, cleaning, and other household chores fell to the wayside. For someone who loved to read as much as Morgan Amanda did, the inability to read more than a page before her concentration flagged was spirit sapping. Despite her efforts, she could not keep up with her studies and finally withdrew from school for the semester.
That winter her mother moved from Chicago to Atlanta to help out. Her father commuted back and forth between the two cities. Though Morgan Amanda was immensely grateful for the assistance—she couldn’t function without it—it was awful to be so physically dependent at age twenty-one and to know that she had uprooted her family. She nevertheless continued to insist on the rituximab infusions, about which Juliet continued to express reservations.
That April Morgan Amanda experienced another near-fatal anaphylactic reaction, this time to the rituximab. Another treatment had to be crossed off the list. Morgan Amanda was starting to feel desperate; would there be any medications left to help her? She had already plowed through every FDA-approved therapy on the market.
Morgan Amanda and her rheumatologist decided to notch up the treatment another level to cyclophosphamide—a chemotherapy agent used to treat lymphomas and serious autoimmune disorders. Juliet was vehemently opposed to this treatment. Cyclophosphamide is a ferociously potent drug—derived originally from the nitrogen mustard developed during World War I—and she worried that the toxicity would outweigh any benefit.
In general, Juliet didn’t like being the “relayer” of another doctor’s medical orders—there were too many confounding ethical, professional, and safety issues. But she had a personal aversion to this medication in particular. Many years before, when she was a resident, an attending had asked her to transcribe a set of medical orders for a patient with aplastic anemia. Among the complex cocktail of medications, there was one abbreviated “Cy.” Juliet assumed it was cyclophosphamide, as this chemotherapy agent was used frequently on the oncology ward. In this case, however, Cy was meant to convey cyclosporine, a potent immune suppressant. Cyclosporine and cyclophosphamide are two of the heaviest sledgehammer medications in existence, and each one alone is approached warily by doctors. A medication error involving the two is about as nightmarish as it gets.
The patient received the wrong medication for several days before the error was noticed and rectified. Luckily, no significant harm had happened to the patient, but the potential for a devastating outcome was very real. The experience of being part of a medical error—the disclosure process, the reporting process, the self-examination, and the wrenching guilt—left a lasting impact on Juliet. Never again did she want to relay someone else’s medical orders. Especially for cyclophosphamide!
But Morgan Amanda and her rheumatologist felt she needed more-powerful medications for her deteriorating condition, and cyclophosphamide was the only option. After much back and forth among all three parties, Juliet grudgingly agreed to write the orders and take on the responsibility for this treatment.
Predictably, the cyclophosphamide caused profound nausea and vomiting. After each monthly treatment, Morgan Amanda felt as though she’d been run over by a truck. It would take days until she could scrape herself out of bed. Her blood counts dropped and her hair fell out like any chemotherapy patient’s. But after the second treatment her joint pain began to improve. Over the next few months the paralyzing morning stiffness began to recede and her energy slowly returned. Even Juliet had to agree—despite her reservations—that the treatment was having a salutary effect.
Morgan Amanda began to feel like herself again. She restarted her classes and was soon able to assume a full course load. Her twenty-second birthday came a few months into the treatment and she decided to celebrate. “I hadn’t been sure I was even going to make it to twenty-two,” she said, “and I wanted to thank everyone who helped me get there.” She invited all the friends and family who had supported her, Emory professors and administrators she’d worked with, and also the medical staff, including Juliet. For Morgan Amanda, it was the chance to finally close the chapter on this awful year. The pages of the next chapter—crisp with expectation and promise—were waiting to be turned.