When Tracey Pratt gets an idea in her head, she goes for it. So when she decided, after five years as a schoolteacher in Washington, DC, to head north for graduate education at the age of thirty-eight, she simply packed up and moved to Cambridge, Massachusetts. Everyone knows that’s where the good universities are, and she’d iron out the details later. She figured, “I can teach anywhere, so let me get a job in Cambridge and then start applying to programs.”
Tracey has that combination of no-nonsense directness and easygoing warmth you might expect of someone who teaches middle school and lives to tell the tale. Her demeanor is both crisp and engaging, but there is also a good dose of self-deprecating humor that hints at why she is so successful with the preteen set. She is also very confident. Indeed, after her very first (and only) job interview, she found what seemed like a perfect match—as a sixth-grade special education teacher in a school that embodied her educational philosophy. The job offer came through before she’d even made it back to her hotel room, and she was thrilled.
That first year was challenging—fun and exciting—but also stressful. Adjusting to a new classroom and a new school system, even a good one, is never easy. She didn’t know anyone in town and her family was far away. Her stepfather in Florida passed away that first Thanksgiving and it was hard being so far from home. Cambridge was a lovely town—but, oh, those winters. The worst part, besides trudging to the bus stop through mounds of snow and slush, was that the sun disappeared by 4 p.m. The whole winter seemed submerged in darkness.
By the end of that first school year, Tracey was exhausted. Juggling a classroom of sixth graders is never for the faint of heart and this year was no exception. Even though she loved her work, navigating a new city, a new job, and a new life had taken its toll. To top it off, a powerful heat wave had settled over the Boston area that June—the kind that makes you pine wistfully for the three-foot snowdrifts of January. The last few weeks of June dragged on and her goal became just to finish out the school year. Like every other inhabitant of Cambridge that June, Tracey was permanently hot, tired, cranky, and thirsty. Pepsi was her drink of choice, and she consumed it constantly to stay cool. Unfortunately, this also caused her to run to the bathroom all the time, which made her even crankier.
One Saturday toward the end of the month the heat had become more than she could take. No matter what she did she was hot and draggy. Finally, she gave up trying to grade assignments and picked her way through the sticky afternoon to go to the movies at Boston Common. Anything to cool off. The air-conditioning was on full blast and her extra-large Pepsi was a veritable arctic ice floe, yet she left the theater feeling hotter and thirstier, if that was even possible. The next day she was too tired even to go to church, which had always been an ironclad part of her life.
When Tracey spoke to her mother that night and described how she was feeling, her mother replied matter-of-factly, “Sounds like you have diabetes. Go see a doctor.”
“I do not have diabetes,” Tracey snapped. “No one in our family has diabetes. I just need this school year to end and this heat wave to finish already!”
Monday morning was like moving through hot tar. It took Tracey forever to get ready for work. It was all she could do to put one foot in front of the other as she walked from the bus to school in the thick heat. Even letting her arms swing alongside her during the walk seemed arduous. “I realized then,” she said, “that I really needed to see a doctor.”
She called the doctor’s office and described her symptoms to Marva, the nurse. The first thing Marva asked was, “Do you have diabetes?”
“No, I do not have diabetes!” Tracey shot back. It was like a conspiracy, it seemed, for everyone to assume she had diabetes. Tracey arrived at the clinic as soon as the school day ended. Marva immediately pricked her finger to check her blood sugar. The glucometer wasn’t able to register a reading. “Maybe it’s a misread,” Marva said. “Let’s try again.”
They did a finger-stick a second time but the glucometer still wouldn’t register a reading. “Maybe this machine isn’t working right,” Marva said. She left the office and returned with a second glucometer. Again, a reading wouldn’t register. “Let’s check your urine instead,” Marva finally said.
That was probably the one task that didn’t require effort for the exhausted Tracey, as the Pepsi-urine pipeline was operating in full waterfall mode. Minutes after Marva took the urine sample she returned to say, “You definitely have diabetes. The glucose is so high that we can’t even get a reading! That’s why the glucometer couldn’t give us a number. It’s so high that we might even need to hospitalize you right now.”
Tracey’s first reaction was a panicked Oh-my-God-what-am-I-going-to-do? “I felt like I was in an immediate crisis,” she recalls, “and I guess I was.” A tube of blood was quickly drawn for stat labs in order to figure out whether hospital admission would be necessary. Tracey sat in the waiting room while the blood test was being run, wrestling with this new concept of having diabetes. Was she now going to be someone who was sick? Who was disabled? Would she be forever defined as a diabetic? At least the waiting room was air-conditioned, even if the “stat” blood test took two interminable hours.
“I began to cry while I was sitting in the waiting room,” Tracey remembered. “I felt helpless.” She called her mother and told her the news. Her mother reassured her that everything would be fine but began wondering aloud if she had been remiss in Tracey’s medical care in childhood. She recalled several times that Tracey had felt faint as a teenager and wondered if she’d somehow missed something.
As Tracey wrestled with these thoughts and emotions, an older man in a wheelchair rolled by. Her teaching-mode pragmatism switched abruptly into gear. Diabetes wasn’t a disability, for goodness’ sake. It wasn’t incapacitating. She had kids in her class who managed their own diabetes. If sixth graders could do it, she could surely do it. She would just do what she needed to do and then get on with her life. She decided then that diabetes would neither run her life nor ruin her life.
She had to hang tight onto that sentiment, though, because the first words out of Marva’s mouth when she returned were “You better call your mother and thank her. Had you waited another day, you would have come here by ambulance!” She gave Tracey a shot of insulin to rapidly lower her blood sugar, and so began a new chapter of Tracey Pratt’s life.
“She was likeable right off the bat.” That’s how Dr. David Baron described Tracey. David is an internist in his midfifties with a low-key style and contemplative nature. Despite having spent the past twenty-five years in and around Boston, his voice retains the studied inflection and pacing of his rural Ohio childhood. He was first exposed to the possibilities that medicine offered when, at age twenty, he volunteered for a summer in the Dominican Republic. He and his team tramped along the steep banks of the Ozama River, vaccination tools in tow. People there lived in shacks made of plywood, tin, and palm fronds. There were no streets, no addresses, no medical records of any kind. Community members simply lined up when the medical volunteers arrived, and the team went down the line, vaccinating everyone in one fell swoop.
David recalls being awed by the potential impact that medicine could have. In one morning, an entire neighborhood could be vaccinated against diseases that were otherwise fatal. After college he joined the Peace Corps and returned to the Dominican Republic to continue working with this community. One day, he was returning home to the small village where he was living when he heard a cry for help. A man was having a seizure in the middle of the road. Everyone turned to David with expectation—he was the American, after all, the person with a college education. They assumed he would “do something.” But of course he didn’t have any real medical training—he was just a skinny white kid from a small town in the Midwest. David watched, helpless, guilty, as the man’s seizure ran its course. The man’s body eventually quieted and he was okay, but David felt chastened by his lack of skills and inability to do anything practical. Medical school offered the promise of that practicality, and David jumped eagerly in that direction.
After completing his medical training, David found a job in Cambridge. He was attracted to the Cambridge Health Alliance because of its commitment to community medicine, to the everyday working folks of Cambridge, to underserved populations often lost in the shuffle, all while maintaining the rigorous academic standards of a Harvard-affiliated teaching institution.
“It’s hard to get to know a patient fully in a fifteen-minute visit,” David said, “but when I first met Tracey I thought, ‘This will be easy; she’s a teacher! I love teachers. Surely she’ll strive to be the best student.’”
For Tracey, the Cambridge Health Alliance was a matter of convenience. She chose it when she arrived in the city because it was right in her neighborhood and it didn’t matter to her whether it was a clinic or a private office. Her life was busy and she was completely healthy so she didn’t have any need to be choosy when selecting a place or doctor for her health care. In fact, the reason she picked out Dr. Baron from the list of doctors was because his name was the easiest to pronounce. Before the diabetes diagnosis, Tracey and David had met maybe once, for some minor ailment that neither even remembers. But now, with the diagnosis of a serious lifelong illness, they were abruptly joined together as though they were in a three-legged race. There hadn’t been time for advance planning or forethought, and now they had a marathon to run together.
David remembers that at first Tracey seemed a bit shy, with a hard-to-crack exterior. He sensed she was feeling him out. Could she trust this doctor? Would he really understand her? He was well aware that the stakes were high. The potential downsides to diabetes are well known and grim: heart attacks, kidney failure, dialysis, amputations, blindness. Diabetes is rarely a “gratifying” illness for doctors or patients. There are no easy or dramatic treatments, no equivalents of antibiotics routing out pneumonia, or a heart transplant granting a new lease on life. There is only the endless slog of giving up foods you always loved, of doctors haranguing about losing weight, of never-ending blood tests, of side-effects-laden medications that are only modestly effective, of expensive supplies that are rarely covered by insurance.
The disease being so common, David had enormous experience treating patients with diabetes and knew the gamut of outcomes. There are always a few patients who—whether because of genetics or grit or a more malleable variant of the disease—are easily able to corral their diabetes under control. These patients seem to be able to turn their lives on a dime, effortlessly shedding a lifetime of starchy diets and sedentary behavior. They seem to thrive on quinoa and kale, never pining for the white rice and doughnuts of their youth. They somehow manage to find an hour a day to spend on the treadmill, losing thirty pounds without much struggle. No matter what their doctors do or don’t do, these patients thrive.
On the other end of the spectrum there are some patients simply unable to face the reality of diabetes. These patients ignore their disease and their medical care until they end up in the emergency room requiring dialysis or foot amputation or bypass surgery. No matter what their doctors do or don’t do, these patients end in a blaze of irreversible medical complications.
But the vast majority of patients exist in the middle ground, trying their level best to deal with a frustrating illness and a society of supersized sodas that seems determined to thwart their efforts. David knew that of all the tools in the medical armamentarium, a strong and trusting doctor-patient relationship was one of the most powerful. Some argue that it is the most powerful. Certainly for a long-term illness with frequent setbacks and ongoing frustrations, a solid connection is critical.
David recognized that the connection he and Tracey would ultimately forge could have major medical consequences—positive and negative—not to mention determine whether their visits together would be pleasant, awkward, fractious, or vexing. A thoughtful person by nature, David turned this over in his mind for some time, contemplating how best to cultivate a working relationship with Tracey.
For Tracey, the first few weeks after the diagnosis were rough. She had been hoping that her new metformin pills would make her feel “normal” again, but instead they just gave her diarrhea. It took months for her body to adjust, but eventually it did. After opening up her garbage pail and tossing in all of her pasta, white bread, and sugar on that first day, Tracey made an effort to improve her diet. But it was hard. Really hard. Preparing healthier meals took more time and more planning. Vegetables were always going bad in the fridge and had to be thrown out. The Pepsi had to go. Salads were okay, but only okay; they weren’t especially beckoning or satisfying, and she had to make a conscious effort to eat them. Tracey forced herself to start eating breakfast in the morning, something that wasn’t a natural for her body. Intellectually, she knew it was the healthy thing to do but that didn’t make it any more palatable. Plain oatmeal with dried cranberries was about the only thing she could stomach in those early hours.
The hardest time of the year was the carbo-clysmic gauntlet that stretched from Thanksgiving to New Year’s. You couldn’t squeak two feet down the linoleum school corridors without running into a plate of doughnuts or a bag of chocolate-covered pretzels or a vat of caramel corn the size of an oil drum that someone had lugged in from a big-box store in the suburbs. Leftover pumpkin pies and apple pies showed up in the teachers’ lounge. There were bowls of chocolate Kisses in the principal’s office and candy canes taped to any surface that wasn’t plastered with tinsel or book reports. Extra cupcakes from class parties piled up on the counters of the main office. Grateful parents brought in pastries. Students gave teachers chocolates from Taza or L. A. Burdick in Harvard Square. Colleagues baked homemade Christmas cookies to share with their coworkers.
On top of that sugar haze baseline were the holiday parties that started at Halloween and ran more or less continuously until mid-January. It was as though American society had conspired—under the auspices of peace on Earth and goodwill toward men—to doggedly challenge the nutritional resolve of every diabetic from Cambridge to Bethlehem itself.
Diabetes turned out to be like an annoying houseguest who never left. It was everywhere—in the food you bought, in the meals you prepared, in the monthly trips to the pharmacy, in the prices of meds that weren’t fully covered by insurance, in the temptations that beckoned on a daily basis, in the inner debate that played out for every morsel of food you consumed, in the idea that maybe you weren’t as healthy as you thought you’d been, in the idea that evolution had designed your metabolism to cling onto every last fat cell and carb just in case an ice age was hovering around the next corner to devastate the planet’s food supply.
What Tracey hated the most, though, was pricking her finger to check her blood sugar. It was awkward, it was painful, it took up precious time and mental energy in an already busy day. But the worst part was that it could show you—in stark digital numbers—how awful you were doing, despite all the hard work and medications.
In the three years that followed, Tracey’s life became even busier. In addition to teaching she became very involved in her new church. She was a staple at the many church events but found her calling in liturgical dance. This was a way to interpret God’s word via dance, using gospel music and biblical text, and she turned out to be a natural. Tuesday nights were packed with dance sessions and Bible study, which she volunteered to teach. Even though it was on a school night, she was willing to stay up late for these activities. She spent hours during the week preparing for each Bible study class, which she found endlessly fascinating and enjoyable. “In fact,” she confided to me, “I daresay that I enjoyed planning for and teaching Bible study more than I enjoyed planning for and teaching math.” Ever the diplomatic teacher, she summed it up this way: “For me God comes first. But math is a close second!”
The civic life of Cambridge came in as a close third. Tracey plunged into local politics, organizing meetings, strategizing for local campaigns, and canvassing for signatures to get candidates on the ballot. As a volunteer for the Democratic City Committee, she was the interface between the Democratic Party and the community. Her hard work drew praise and she was selected to attend state conventions and be part of larger civic committees.
Tracey tried to keep a realistic view on the diabetes. A wonderful nutritionist offered the perspective that there wasn’t really a “diabetic diet” that she needed to follow—just a balanced diet of healthy foods with everything in moderation. And she also managed to avoid the trap of obsessing about weight.
“Weight for me was never much of an issue,” she told me, “but Dr. Baron would definitely comment if I gained a few pounds, letting me know that I would have many more difficulties if I gained weight.” Ironically, she got the opposite reaction from her church friends: “People in the African American community would say that they didn’t understand why I had diabetes because I was too ‘skinny’ to have diabetes. In their experience, most people who develop diabetes in adulthood were much more noticeably overweight.”
Exercising wasn’t as much of an obstacle for Tracey as it is for some people. She loved the liturgical dance she was learning and often found herself practicing the moves in her kitchen, which was the biggest room in her tiny, basement Cambridge apartment. She’d run track in high school and college so didn’t mind going to the gym, but finding the time to do so was a Sisyphean task. She was so busy that there wasn’t enough physical space on her calendar to squeeze in all of her commitments. There was hardly time for proper grocery shopping or preparing healthy lunches in advance. She was juggling so many things that it was hard to remember to get her medications refilled before they ran out. Getting to the doctor during regular business hours was nearly impossible.
“It was pretty easy to cancel a doctor’s appointment if it conflicted with something else on my schedule,” Tracey said. And there was always something else on Tracey Pratt’s schedule. She took her medications—most of the time—and checked her blood sugar some of the time. But things were always getting in the way. There were papers to correct and parents to call. There were meetings for school, and for her church group, and for the Democratic City Committee. There was Bible study preparation and dance class. There were events to plan, events to attend. And there were always her students—lovable, stimulating, but with endless needs. As her doctor, David worried. Tracey’s blood sugar level—though lower than it had been initially—remained persistently elevated, and this put her at increased risk for all of the dreaded complications of diabetes.
“She’d accept some of my recommendations,” David recalled, “but ignore others.” More than many doctors, David was the type who invested his soul in his medical practice. He so much wanted Tracey to succeed. Unlike many of his other patients, Tracey was educated and had a full-time professional job; she was responsible and organized. David knew she understood his medical recommendations—so why did she ignore so many? Did he need to try harder and schedule more frequent visits? Or maybe he needed to pull back and give her more space. Success seemed to be within their grasp, yet it kept eluding them. It was heartbreaking.
Tracey had a slightly different take on things. “We weren’t seeing eye to eye,” she told me. “No matter what medical issue I went to him for, the conversation always went back to diabetes and me not taking care of myself. I mean, I could go there for a pulled muscle in my back or a mammogram question, and it was all about my blood sugar levels being lousy and my diet not where it should be. I could feel that he was frustrated with me, but as a woman in my early forties I had lots of issues that didn’t relate to diabetes. It got to the point that if something was wrong, I didn’t even want to go to the doctor because I would always end up in the diabetes conversation and feel bad about myself.”
“I tend to set high expectations for myself and for my patients.” David said. “And I’m hard on myself when things don’t go right. She was clearly very intelligent and hardworking. What could I be doing better?”
“Noncompliance” is a hot-button issue in medicine. Defined literally, it means the patient is not following the doctor’s recommendations—whether for taking medications, showing up for an appointment, getting a test, or eating appropriately. In this model, Tracey would clearly be labeled noncompliant. However, the term has started to fall out of favor because of the paternalistic overtone and the implication that the patient is doing something bad. Now the term is “adherence,” with the more neutral determination of whether a patient is able to adhere to an agreed-upon medical plan. As Tracey’s story illustrates, adhering to a medical plan can be extremely difficult, with factors much more complex and multifaceted than a patient simply choosing not to do the right thing.
Heidi E. Hamilton, a linguistics researcher at Georgetown University, has been interested in the issue of nonadherence in diabetes because of its vast cost in both dollars and health. She wondered how communication issues might play a role in adherence to diabetes regimens.1 Hamilton examined videotapes of twenty-four routine visits of patients with diabetes, plus individual interviews with the doctors and with the patients after the visits. In the office visits, the communication challenges were easy to see. The doctors tried all sorts of strategies to get their patients to adhere. At the most basic, there was the standard recitation of the facts and figures about diabetes. Then there were doctors who added more persuasion and emotion to this education effort, almost trying to sell their patients on the benefits of adherence. Some doctors nagged and harangued their patients. Others used scare tactics, trotting out the awaiting horrors of dialysis, blindness, amputations, impotence, and heart attacks. At the extreme end was the occasional doctor who implied that the patients might need to find another doctor if they didn’t shape up soon. But as most doctors and most patients know (and any parent knows!), the strategy of repetitively hammering in the facts rarely achieves the desired outcome. Yet doctors seem to do it over and over again, despite the lack of results.
The first question to ask is why is adhering to a medical plan so arduous? Various studies suggest that 50–75 percent of patients have difficulty with adherence.2 The answers were right there, Hamilton saw, plain as day—but only in the post-visit interviews. In these open-ended discussions, without the doctor present, patients spoke more forthrightly about what was happening in the trenches of real life. They knew exactly where the pitfalls and stumbling blocks lay. Whether it was the cost of healthy food, the discomfort of insulin shots, the side effects of medications, the social pressures of eating, their complicated work schedules, the embarrassment of taking medications, the shame surrounding body image, the expense of glucometer supplies, the emotional eating to relieve anxiety, the cutting of pills in half to make an expensive prescription last longer, the conflicts with other family members, the simple longings for the foods of their youth—the patients knew precisely what the sources of nonadherence were. (Tellingly, not one patient cited lack of factual knowledge as the reason for not being able to adhere to a treatment plan.)
When Hamilton went back to the videos of the doctor-patient visits, none of this came up in conversation. Mainly the doctors spent their time trying to educate their patients, even though the post-visit interviews revealed that the patients knew all the relevant stats. “Patients are so varied as to what motivates and what challenges them,” Hamilton told me. “They have so many issues in their lives that make diabetes hard to manage, but these issues don’t come up in the regular doctor-patient encounter.”
Research into adherence with blood pressure treatment by some of my colleagues at NYU reveals comparable findings.3 When doctors dominate the conversation and focus on the strictly medical issues of the visit—as opposed to the psychosocial aspects—the risk of nonadherence to medications is three-fold higher. When patients are experiencing particularly stressful life situations such as inadequate housing or unemployment, doctors’ avoidance of these issues is associated with a six-fold higher risk of nonadherence to medication. It’s often hard for doctors to comprehend that there’s much more to adherence than a patient just opening a bottle and swallowing a pill.
There is clearly an asymmetry between the doctor and the patient—doctors endlessly reciting the facts of the disease and patients with a store of crucial information that never gets on the table. Of course, some asymmetries in the medical relationship are a given; it is the patient with the illness and the doctor with the medical background. But other asymmetries are created, with both doctor and patient having a hand in it.
As I mentioned earlier, it is the patient who usually takes the lead when the visit starts, as it is the patient who made the appointment and came to the doctor. But within minutes, or usually seconds, the doctor snags that lead, steering the conversation in a particular direction—especially in the narrowly biomedical visit that Debra Roter described. This is not always a bad thing—the doctor may be drilling down to figure out the cause of a patient’s symptom—but nevertheless there is a clear shift in who is leading.4 This may be why patients’ insider information about nonadherence never comes to light: doctors are too busy leading to stop and ask, and patients may feel that they don’t have the opportunity or legitimacy to put their knowledge out there.
“Doctors,” Hamilton noted, “use the blunt instrument of reciting the facts. They have the laudable goal of educating the patient but it can come across as simply reading the riot act over and over again.”
David Baron was earnestly working to engage Tracey Pratt in caring for her diabetes. He used the tools he knew best: education and counseling. He also invested personal effort and caring to try to help Tracey understand the disease better. But for Tracey, it felt like getting the riot act read to her, over and over again, even though she knew that he meant well.
Tracey found herself avoiding the clinic more and more because every time she went she ended up feeling lousy about herself. “When I did have to go,” she admitted with a guilty smile, “I would try to see the nurse practitioner instead of Dr. Baron. But Dr. B would always seem to find me! I would feel like ‘He got me—now I’ll have to hear it.’ In retrospect I know that it was because he really cared but at the time it was like getting caught with your hand in the cookie jar.”
“At some point,” David said, “she’d flash that nice bright smile and tell me what I wanted to hear.” He gave a self-deprecating laugh. “I’d fall for it every time. . . .”
It’s very easy, especially in a busy clinic, for a patient who misses a few appointments to get lost in the shuffle. The more time that passes, the more easily he or she can fall through the cracks. But David knew all too well that getting lost in the shuffle with uncontrolled diabetes could have dreadful medical consequences, so he redoubled his efforts. “Even though she was trying to avoid visits with me,” he said, “I kept looking for little ways to connect, hoping to nudge her back on track. I also wanted to show her my support and concern. So I was really surprised to learn, later on, that what I thought was support and concern, she perceived as overbearing.”
“I remember one of our last visits before my one-year hiatus from the clinic,” Tracey said. “I had come in for something completely unrelated and he brought the conversation back to diabetes again. He was frustrated with me and I was just as frustrated with him. That’s when I started to avoid him. To get refills, I’d go to the pharmacy and ask them to call the clinic for refills. Anything to avoid seeing him in the clinic.”
“Here was a patient who could really understand the medical issues,” David said, “but it wasn’t working out. It was hard for me not to take it personally.”
“Things were getting worse,” Tracey acknowledged, “but I was getting the message that it was because I wasn’t doing the things I needed to be doing.” The guilt and blame were more than she could handle, so she finally decided that she needed to switch doctors. Thinking it might be awkward to see a different doctor at the same clinic, she decided to go the whole hog and switch insurance plans and start at a different location.
“But it never happened,” Tracey said, taking a self-mocking jab at herself, “because I missed the open enrollment to change insurance. In my heart of hearts, though, I knew that I wasn’t doing what I needed to do to care for myself. I was mostly taking my medications but I wasn’t as organized as I needed to be. Overall, I’m a type B person, which works well for teaching. But for diabetes you need to be type A.”
On a Friday evening in December, Tracey stopped at the Lotus Café for a spicy tuna roll. The next morning she awoke with a stomachache. Her friend Stanley had warned her about eating sushi from a place that used to be a Kentucky Fried Chicken and now she was paying the price. Either that or it was a stomach bug she’d caught from one of her students. Whatever it was, she didn’t think much of it. She didn’t call her doctor because it had been about a year now that she hadn’t had much contact with the clinic.
In any case, she was too busy. She’d enrolled in a principal-certification program and had a paper due that week. Over the next few days she had worsening stomach cramps and then started vomiting. “I still thought it was a bug that would pass,” she said, so didn’t bother seeking medical attention. She ventured out to the Stop & Shop on Tuesday evening to buy some soup because she couldn’t hold down any solid food. It was a chilly night with slippery black ice on the sidewalks. She inched her way to the store and promptly vomited in the restroom. On the way back, it was so cold that she could hardly draw a breath. She had to sit down on the icy front steps of her building because she couldn’t muster the energy to turn the key in the door.
Once again, it was her practical mother who stepped in. Over the phone, Tracey’s mother insisted that she go to the hospital. “I was still mainly concerned with getting this paper done that was due on Thursday,” Tracey said, “but I was too weak to argue with her.” Tracey was so short of breath that it was a struggle just to dial 911.
Tracey arrived in the emergency room semiconscious, severely dehydrated, with sky-high blood glucose and rock-bottom blood pressure. The pH level in her blood had plunged into acidic levels, near the range where the heart cells could be destabilized into cardiac arrest. “When they told me I would be admitted to the intensive-care unit,” she recalled, “I realized that it was serious.”
Even though Tracey Pratt had type 2 diabetes, she was in the throes of diabetic ketoacidosis (DKA), a life-threatening complication usually seen only in type 1 diabetes. The autoimmune process that underlies type 1 diabetes completely snuffs out the pancreas’s ability to make insulin, so if a patient runs out of her insulin prescription, she can easily end up in the extreme situation of DKA. Patients with type 2 diabetes, by contrast, are still able to produce insulin. Though their bodies don’t use that insulin effectively, the presence of a baseline amount usually protects them from DKA. So Tracey’s descent into DKA was as unexpected as it was grim.
She was rushed to the ICU as liters of fluid were pumped into her veins to bolster her blood pressure. A round-the-clock insulin drip was initiated to ease down her glucose in a controlled manner. The electrolyte chaos in her blood was corrected, though gingerly—in DKA it’s all too easy to slam the physiologic ballast in the other direction.
Tracey vaguely remembers seeing David in the emergency room, and even though she’d been irritated by him, it was still a comfort to see a familiar face amid the chaos. “You are very sick,” she remembers him telling her, “but you will be okay.” The reassurance was very meaningful to her, though most of that day was a blur. It took several days of intensive treatment for Tracey’s metabolism to edge back from the brink.
It seemed that Tracey might have had a more severe type of diabetes than either she or David had suspected in the beginning. Certainly ending up in the ICU with DKA is not typical of patients with type 2 diabetes, though it is known to happen on occasion. Mixed in with the scare of this life-threatening episode was an odd element of relief for both David and Tracey. It wasn’t that he was an ineffective doctor or that she was a “noncompliant” patient, but that they were dealing with a complicated and forceful illness thrust into their lives, one that was much thornier than either had expected. Tracey was bright and hardworking, struggling to fit an absolutely unwanted challenge into her already more-than-full life. David was well known as a compassionate and thoughtful doctor, dedicated to going the extra mile for his patients. Despite their efforts—as well as their missteps—the disease was a relentless challenge. Nevertheless, both doctor and patient realized that at some point they would have to talk about what had transpired between them over the past year or two.
“He tried to have that conversation with me every day in the ICU,” Tracey recalled, “but I wasn’t ready for it. But I didn’t have the wherewithal to tell him that.”
David remembers the tension. “She was reserved,” he said, “only reluctantly engaging with me.”
“The conversation was always about me,” Tracey said. “Like, why I hadn’t been to the clinic this past year. Honestly, it seemed more about his ego as a doctor than about me as a patient.” For some doctors, there might be the temptation to say—or imply—”I told you so. If you had just done what you were supposed to do, none of this would have happened.” But that isn’t David’s modus operandi. Mainly, he felt sad about the suffering Tracey had to endure, the miserable days in the ICU. When he had volunteered in the Dominican Republic those many years ago, he’d been stymied by his lack of skills. He’d been so frustrated to sit, impotent, on the sidelines while that man in the street experienced a seizure. “Now I have all this expertise that I didn’t have in the DR,” he reflected, his tone tinged with regret, “but I still can’t always help my patients.” But he also recognized that the ICU crisis might be a turning point for Tracey. She might now be able to trust him more and allow him to work with her more on her illness. She might now be able to focus more strongly on what she needed to do to take care of herself.
“My initial response to him,” Tracey said, “was, ‘I don’t want you as my doctor. I want to change doctors.’ He replied, ‘If that’s what you want, that’s fine. I just want you to be okay.’ I know he was trying to be nice but I don’t think he picked up on how upset I was.” When Tracey and I spoke about this, more than a year and a half after the event, she choked up while retelling the story. She was amazed that the illness and the confrontation were still so emotionally laden for her.
However, when the hospital discharge papers gave Tracey a follow-up appointment with David, she didn’t object. “By the time I recovered from the DKA,” she said, “I felt much better, so I felt okay about having an appointment with Dr. B. Despite my frustration I was still really glad he was my doctor.”
At that first visit David readily acknowledged the situation. He opened with “I know you said you wanted another doctor . . .”
But Tracey’s trademark pragmatism sailed right in. “It’s all right,” she said. “Let’s just get on with it.” She never viewed the situation as anyone’s fault, so there didn’t need to be any apology or forgiveness—on either side. And inside she was thinking, “Of all the doctors out there, I’d rather be in the care of someone who knows me than someone who doesn’t.”
David had been thinking about the ways he could best help Tracey in this next chapter of her medical care. The clinic had recently created a program for diabetes that involved shared medical appointments. A group of patients, all with diabetes, would come to the clinic at the same time. There would be nurses, nutritionists, podiatrists, pharmacists, and doctors all involved. Much of the visit, though, was patients helping other patients with the ins and outs of diabetes. David would still be her primary doctor, but there would now be an adjunctive team to offer extra support.
Tracey was hesitant at first but eventually gave it a try. It turned out to be an excellent fit, and very quickly Tracey became a leader in the group, the experienced voice who offered guidance to other patients. The multidisciplinary approach suited her busy schedule, as she was able to interface with many specialists at once. And the fact that the appointments were in the evenings meant her school schedule wouldn’t be disrupted.
This also turned out to be an excellent fit for David and Tracey’s doctor-patient relationship. Diabetes no longer had to dominate their visits, as there was now a whole team working on the disease. David and Tracey were able to focus on other aspects of Tracey’s health that had been neglected by the overbearing shadow of the diabetes. The medical issues—diabetes and otherwise—improved markedly.
One year after this episode Tracey and David did something that was both very unusual and very brave. They sat together and told their stories in public. They spoke in front of an audience of patients, doctors, nurses, and medical staff as part of the Health Story Collaborative. Founded by Annie Brewster, an internist at Massachusetts General Hospital, the Health Story Collaborative encourages patients to tell their stories. During her medical training Brewster was diagnosed with multiple sclerosis and found herself seeking the stories of other patients to help her come to terms with the disease. Working with psychologist Jonathan Adler, Brewster has spent the past few years recording stories of patients with different illnesses and also helping them tell their stories publicly before audiences of family and friends. The act of telling the story turns out to be very therapeutic for the teller, and hearing it is therapeutic for the listener.5
Brewster and Adler wondered what it might be like to have patients and their doctors tell their stories together. Tracey and David were the first pair in this experiment.6 In front of the audience, they each spoke for twenty minutes, discussing their personal histories. David recounted picking corn as a child in Ohio, his experiences as a volunteer in the Dominican Republic. Tracey spoke about being a teacher and her drive to start a new life in Cambridge. And they each told the story of the illness that catapulted them—two random strangers, really—into intimate contact. They spoke frankly about how it was to work with the other person, and how difficult some of the moments were. Afterward, the moderator asked questions that encouraged a dialogue between them.
When I watched the video of this presentation, I was fascinated. It was intriguing to hear them each tell the tale—almost like having two movie cameras, placed at two different vantage points, shooting the same scene. You could pick out the factual trajectory of the diabetes and could also understand how each camera viewed the events differently. But the most interesting thing was that both views were realistic and accurate portrayals. There wasn’t the stereotype of the noncompliant patient or the paternalistic doctor. As with Morgan Amanda and Juliet, there were two equally valid and plausible stories. Two equally objective accounts of the same set of facts.
What impressed me even more was how David and Tracey talked directly to each other about their experiences together, confronting their misunderstood efforts and communication mishaps. This was the first time I’d seen such an exchange. Doctors certainly talk to colleagues about their patients, and patients definitely talk to friends and family about their doctors. But it is almost unheard of to have doctors and patients talk directly to each other about their working relationship.
When I think about this, I realize that there’s no real place in the medical world for this sort of communication, except perhaps in psychoanalysis, where issues of transference can be discussed. In regular medical encounters, the boundaries of doctor roles and patient roles prevent such conversation about the relationship and the communication.
Brewster and Adler acknowledge that “professional boundaries are certainly important.”7 But, they also note that “this obsession with boundaries has conspired with the pressures of efficiency . . . to remove some very personal (and important) elements of the patient-provider relationship.”
What David and Tracey did was quite unusual. David admitted that it was challenging, but also noted that there was a “liberating feeling that we are all just people talking together.” There was some awkwardness, of course. The audience was filled with his patients, fellow doctors, his staff, medical students, even his wife—all of whom know him and work with him in different ways. Nevertheless, it had a profound impact on him as a physician.
“I have a much better sense of Tracey’s life and all the challenges that a chronic disease like diabetes has on one’s life,” David observed. “So it is easier to see her as a partner rather than me being the sole ‘expert’ and doling out advice. I must say, the former is much more satisfying.”
For Tracey, it occurred to her how much she and David had in common with respect to their professional lives: “We both have jobs that serve the general public. We both spend an inordinate amount of time thinking about how to have the greatest impact on those we serve. Both of our jobs are often thankless; but I imagine that, like me, Dr. Baron knows that all the time and energy spent is well worth it when he has a positive impact on those he serves.”
Diabetes has become a very matter-of-fact part of Tracey’s life. It’s not something she necessarily discloses to everyone, but neither is it something she hides. As is often instinctive in teachers, everything can be teaching material, and diabetes is no exception. She is a leader in the patient groups at the Cambridge Health Alliance but also uses diabetes in teaching her middle school students. Diabetes is a pillar of her life but it doesn’t define her life.
“Some of the most positive moments in my life,” Tracey later told me, “have occurred since being diagnosed with diabetes.” In the relatively short span of time that diabetes has been in her life, Tracey has visited the Elmina slave castle in Ghana, climbed the Great Wall of China, learned how to merengue on a Havana rooftop, purchased her own home, returned to school, and completed a yearlong intensive program for a certificate of advanced graduate study in education administration.
And that’s only what she’s accomplished in her spare time. . . .