“I would be careful,” a fellow physician warned Juliet Mavromatis when she told him about her plans to attend the birthday party of her patient Morgan Amanda Fritzlen. While not considered unethical, friendships between doctors and patients are viewed as a gray area, with the potential for clouding judgment from either perspective. Many physicians are extremely leery about any connection at all with patients outside the office. But Juliet was acutely aware that the working relationship she had with Morgan Amanda wasn’t smooth. Though they got along in a personable fashion, there were still ongoing clashes between them about high-risk treatments that Morgan Amanda was insisting on. A doctor-patient relationship couldn’t survive on amiable pleasantries alone. Plus, Juliet was genuinely interested in Morgan Amanda as a person.
The daughter of (and granddaughter of and eventually sister of) cultural anthropologists, Juliet spent childhood summers in a remote Brazilian fishing village. Her father toted her and her brother along as he did fieldwork, spending hours in deep conversation with local residents to learn about their lives and earn their trust. At age fifteen Juliet and her family moved from their quiet Midwestern college town to the flamboyance of Rio de Janeiro for a year.
Growing up in this unusual anthropological cauldron engendered in Juliet a genuine curiosity and respect for the tapestries of her patients’ lives. “I decided that if Morgan Amanda was to trust me,” Juliet told me, “I had to take a different approach. I had been fighting with her over the direction of her medical care but didn’t want to continue that way; I would have to connect on another level.”
Morgan Amanda was actually thinking the same thing. She liked Juliet as a person, but she was frustrated by Juliet’s reservations about every aspect of the treatment. She was also painfully aware that she was entirely dependent upon Juliet—no other doctor had been willing to take her case and no other doctor would write the orders for the cyclophosphamide treatment so that she could remain in the Emory health-care system. But she needed more than a doctor who was just agreeable; she needed a passionate advocate. When Morgan Amanda invited Juliet to the party celebrating her twenty-second birthday, she was seeking to strengthen their relationship and Juliet’s commitment.
The party took place on a blazingly hot and humid July afternoon, just shy of the one-year mark of their doctor-patient relationship. The magnolia trees had long since shed their incandescent pink and white flowers, and were now just part of the lush Georgia greenery that enlivened the windows of the thankfully air-conditioned party room. The mood of the well-wishers matched the overabundance of food: curries, biryanis, sushi, plus plenty of “plain food” for guests with less-adventurous palates. Juliet felt like an honored guest as Morgan Amanda introduced her around to her family, friends, and teachers.
The pièce de résistance was the birthday cake that Morgan Amanda’s mother had topped with a painted glass peacock ornament, complete with brilliant willowy feathers. It was so stunning that Morgan Amanda saved it and hung it on her Christmas tree every year thereafter. Morgan Amanda looked radiant in her cream-colored dress with its hexagonal accents of navy blue and deep yellow. She chatted with the guests, making sure everyone had enough to eat and someone to talk to, occasionally swiping off the vanilla frosting from her slice of cake. (Morgan Amanda was generally health conscious in her eating habits, but frosting was her one weak spot. She’d buy it by the can—the cheapest and junkiest she could find—and polish it off with a spoon.)
Juliet gave a gift of her favorite book, The Fountainhead. (“I love it for the characters, not the politics!” Juliet hastened to tell me.) For Morgan Amanda it was a moment of uncommon linkage, because The Fountainhead was also her father’s favorite book.
After the party, the doctor-patient relationship took on a distinctly different quality. Morgan Amanda shared some of her personal writings with Juliet, as well as her dream of going to medical school. “We bonded on a number of things,” Juliet recalled. “Writing, medicine, books . . . shoes. I think we might have been friends if we’d met in another setting.”
While their relationship improved, Morgan Amanda’s health, unfortunately, did not. The cyclophosphamide, which helped initially, did not turn out to be a panacea. The illness flared up with a vengeance. As the trees unfurled their palettes of mahogany and gold, Morgan Amanda became plagued with worsening weakness, fatigue, fevers, sweating, joint pains, and swollen legs. She landed in the ER several times, as doctors tried to tease out whether she was experiencing blood clots, infections, or her “regular” arthritis. She became weaker and sicker. By Thanksgiving she was barely able to walk with crutches. Her weight dropped to ninety-eight pounds, her body almost a billowing sheet on her six-foot frame.
“I spiraled into a crater of illness,” Morgan Amanda said. “I was sicker than I’d ever been. I was afraid to make the declaration that cyclophosphamide wasn’t working because there was nothing to take after cyclophosphamide.” Cyclophosphamide was the end of the line, and everyone knew it. Morgan Amanda was beginning to feel hopeless. Medically, she was desperate.
Experimental treatments were considered. Her hematologist suggested plasmapheresis—a complete filtering of the blood to remove antibodies. Her psychiatrist prescribed antidepressants but these served to exacerbate her shakiness and sweats. The worsening shakes and sweats were thought to be symptomatic of panic attacks, so tranquilizers were prescribed. Opiates were added for the unremitting pain. The number of medications and their possible interactions and side effects was staggering.
Meanwhile Morgan Amanda was combing the Internet for new treatments. She stumbled upon a few experimental trials in which bone marrow transplants were being tested for autoimmune diseases and began to pursue the possibility of this treatment.
The next medical appointment, in early December, was what both doctor and patient would refer to as the “critical point” in their relationship. Morgan Amanda was still taking cyclophosphamide, afraid to stop it, even though by this point it clearly wasn’t working. She’d been talking with her rheumatologist about a bone marrow transplant, but meanwhile the cyclophosphamide orders needed to be renewed every month. For that, she needed Juliet.
The visit was late in the day, a last-minute add-on appointment. Juliet had been pondering Morgan Amanda’s case, concerned about her worsening condition and the escalating side effects of the medications. Juliet sought the advice of several experienced clinicians at Emory. Each expressed utter disbelief at Juliet’s prescribing such a high-risk medical regimen that ran counter to her own clinical judgment. Juliet found herself increasingly worried, not just about the medicolegal ramifications, but that she could be directly harming her patient.
The visit began with the usual opening pleasantries. In most of their visits Morgan Amanda was the one who took the lead in the conversation, usually with a bullet list of items to discuss. But this visit was different, with Juliet taking a firm lead.
“I want to talk to you about the cyclophosphamide,” Juliet said, sitting in her chair while Morgan Amanda perched on the exam table. “You’ve been e-mailing me about renewing the orders but it is clear that the medication is not working. I spoke to your rheumatologist over the weekend and told him how uncomfortable this makes me. I worry that I am harming you by prescribing this.”
Morgan Amanda was already in a tense state. She was sicker than she’d ever been, worried she was running out of treatment options. She felt strung out on all the psychiatric medications that had been piled onto her regimen. She’d been waiting nervously in the waiting room for more than an hour before she’d been called in to the exam room. Her hackles were already raised. When Juliet made this statement, Morgan Amanda did not hear concern; she heard that her doctors were talking about her behind her back.
Juliet continued calmly but definitively. “I’ve felt conflicted about writing these orders all along; I’ve never heard of any other primary-care doctor prescribing such a toxic drug as cyclophosphamide. And it isn’t even clear to me that rheumatoid arthritis is what is causing all your symptoms. I’m not convinced that this is your true diagnosis.”
Intellectually, Morgan Amanda knew that Juliet was pointing out what they all knew—that her symptoms did not fit the classic RA picture, that the drugs were not working—but psychologically she heard “You’re not really sick.” Juliet’s doubting of the RA diagnosis was, in effect, undermining the very framework that enabled Morgan Amanda to receive care. For someone who had been doubted all along, who’d had to fight to get care, who’d had to face the fact that most doctors did not want to touch her case, this sounded like “There’s nothing wrong with you.”
Morgan Amanda abruptly catapulted herself off the exam table, her frustrations of the past year boiling over and her words erupting with uncharacteristic vitriol and barely suppressed tears. “Why now? Why do you suddenly have a decisive opinion now?” The sobs intensified. “I’ve been doing your job most of the time—all the research, coordination, negotiations. I have to figure everything out for my care and stay on your case to get things done. Why now do you want to step in and take decisive action? Why do you suddenly care to do something now?”
Juliet was taken aback by the firestorm and endeavored to keep things from escalating. “I do care,” she said quietly, while Morgan Amanda hovered above her, unsteady on her feet. “I care very much. That is why I’m telling you that the cyclophosphamide treatment seems to be doing more harm than good. In fact, I’ve had dreams—nightmares—that you died from the medications I’m prescribing.”
For Morgan Amanda these admissions did not come across as signs of caring; they felt paternalistic. If you really cared, she thought, you would understand that I need someone to push the boundaries. If you really cared, you would be aggressively hunting down other treatments, not jumping ship when one drug isn’t working. Years later she was able to accept that Juliet really did care and was in a tough spot, but at the time she heard her doctor backing out. I’m gutsier than this woman, she thought. I’m willing to fight for my life. So she brought up the issue of the bone marrow transplant.
Juliet had heard about this from the rheumatologist, but this was the first time Morgan Amanda had brought it up with her. Chemotherapy agents such as rituximab and cyclophosphamide were one thing, but a bone marrow transplant was in a different stratosphere. Used typically with lymphomas, leukemias, and other cancers, the procedure involves obliterating a patient’s own bone marrow with high-dose chemotherapy and radiation, destroying all native red cells, white cells, and platelets. Then, stem cells from a donor are transplanted.
Destroying the bone marrow, by definition, decimates the body’s immune system, leaving a person vulnerable to deadly infections, not to mention blood clots, intestinal breakdown, and liver failure. Yes, the “rebooting” of the immune system offered the theoretical possibility of curing Morgan Amanda’s autoimmune illness, not to mention her life-threatening allergic reactions, but the risks were immense. Death was a distinct possibility.
Even though Juliet knew this might be coming, she was nevertheless almost too dumbfounded to speak when the topic came up. “Do you have any idea of what a bone marrow transplant entails? It could kill you.”
“I know what a bone marrow transplant entails,” Morgan Amanda snapped, leaning unsteadily on a crutch. She could feel her body shaking with anger as she started jamming papers and books into her purse. She avoided making eye contact with Juliet because she knew that it would open the floodgates. She was desperate not to break down completely in front of her doctor.
Juliet pressed on, pulling out her armamentarium of facts. “And a doctor can’t just ‘write an order’ for a bone marrow transplant. It’s an enormous process. Plus, I’ve never even heard of bone marrow transplants being used for RA.” It was already growing dark outside and this visit was wearing Juliet down—both physically and emotionally. How much longer could it go on like this? But she had to say what she was really feeling. “The bigger point,” she said, “is that we don’t really know what disease you have. To consider such a serious treatment with an unclear diagnosis is not just dangerous, it’s reckless.”
To Morgan Amanda, this was the last straw. All of her other treatment options had failed and her body was slowly giving way. Juliet’s jettisoning of the bone marrow transplant idea was tantamount to abandonment. “That’s it! I’m done,” she burst out. “I’m done and I’m leaving. I’m finished with this.” She stormed out of Juliet’s office, or at least stormed as much as she could—heaving her skeletal body onto the crutches, slinging her bulging purse that was heavy enough to ballast a battleship, and hobbling out the door, by now crying too hard to even see where she was going.
“It truly felt like my doctor was abandoning me,” Morgan Amanda said later, “both medically and personally.” There was no way she could continue to work with Juliet. She was ready to fire her doctor.
As it happened, Juliet was thinking the exact same thing about Morgan Amanda. After that draining visit Juliet sat down and wrote a letter to her patient, formally resigning as her physician. Their interactions were taking such an emotional toll that she felt she could no longer effectively be Morgan Amanda’s doctor.
But the letter was never sent.
What is so striking about the conversation between Morgan Amanda and Juliet is the mismatch between what each person said and what the other person heard. Over the course of a year, I spoke extensively with Juliet and with Morgan Amanda about their time together. Both women approached their recollections thoughtfully and intelligently, willing to self-reflect and take responsibility for their own shortcomings. Both were remarkably generous in spirit—to themselves and to the other person. Both expressed genuine respect and obvious fondness for the other.
But even with that, it sometimes felt as though they were telling two different stories. Even accounting for vagaries of memory and differing points of view, it was clear they’d drawn different conclusions from the same set of events.
What patients say and what doctors hear can be two very dissimilar things. The reverse is also quite true: what doctors say and what patients hear can be radically different. When Juliet confronted her patient about the side effects of cyclophosphamide and the excessiveness of considering a bone marrow transplant, Morgan Amanda didn’t hear it as a medical discussion of risks and benefits. She heard a doctor denying that she was sick, another doctor getting ready to walk away from her care. With hindsight, as well as a particular strength of character, Morgan Amanda could recognize that Juliet was genuinely trying to do the right thing as a physician, that Juliet really was thinking about her patient’s health and trying to prioritize it. But at the time, in that particular context, with the physical and emotional stakes so high, she could not hear that.
Juliet was also able to eventually recognize what she was not able to hear in the moment. “From her standpoint,” Juliet later wrote to me in a letter, “her quality of life was very poor, and she was willing to take huge risks in an attempt to improve it. Perhaps I never could fully understand this perspective.”
Listening is one of the most intricate skills we possess, yet also one that seems so obvious that we hardly ever think about it. It’s like walking—no one ever laid out the instruction manual for you, but you somehow know how to do it. Even though we may hear what people say without exerting any effort, how we extract information from what’s being spoken (and how we convey that understanding) is another ballgame altogether.
If you are sitting in a lecture hall, for example, and a professor is droning on about fifteenth-century religious tractates, or pyruvate kinase activity in the mitochondria, or moral symbolism in Silas Marner, your brain could very well be in a passive mode. Sounds and words float in—a few stick, most drift distractedly away. Or someone is speaking right at you but your mind is focused on your snarling stomach and its misguided choice of deep-fried burrito, or your tenuously napping baby in the next room, or that locust of a phone buzzing in your back pocket. You are preoccupied and only vaguely catching what might be the most scintillating conversation since Lincoln debated Douglas.
By contrast, it’s quite different when you determinedly strive to listen to what is being said—instructions on cashing in your winning lottery ticket, for example, or a declaration of love from someone you could possibly love back, or the moment you recognize that pyruvate kinase catalyzes the production of ATP, which is the gasoline that powers the cell and so by definition powers the entire body, and that is perhaps the coolest thing you ever possibly could imagine and to hell with a career in medicine and your student loans and your parents’ expectations, you’re going to become a biochemist and squeak by from grant to grant and live in a ratty lab coat as long as it gets you into the lab and into those miraculous cells.
In these cases, you invest your energy into hearing every word and extracting meaning from those words, even meaning that resides between the lines. Such active listening requires intense focus—on the person speaking, on the words being spoken, and on the nonverbal cues that clarify meaning. But these concepts of passive and active listening embody only part of the multidimensionality of listening. There is a whole academic field that studies listening as a relational activity, something that creates a relationship between two people.
“Extracting information,” says Graham Bodie, a listening researcher from Louisiana State University, “is too simplistic a definition of listening. It presumes that talking is a linear process, that words are a mere conduit with meaning packed inside, that the listener just needs to unpack them at the other end, like opening a letter.” This concrete portrayal of communication may have come about because of a quirk of history in which communications research arose from the field of public speaking rather than from academia. As Bodie described it, underappreciated English teachers in the early 1900s formed the first organization dedicated to teaching proper public speaking. At the time, public speaking was considered the epitome of communication, and so the premise of early communication theory was that the speaker at the podium would gather the pertinent facts into a tidy bundle and dispatch it off to the listener in the audience like a basket on a zip line.
“Unfortunately,” Bodie says, “this places a large burden on the speaker.” To improve communication, the speaker needs to be clearer, or more expressive, or employ superior words, or simply holler louder. The listener, by contrast, has only to sit back and wait for the speaker to compose the most efficacious basket of facts and sail it forward.
Indeed, this is how doctor-patient communication is often viewed. The burden is on the patient to tell the clearest, most informative story so the doctor can make the appropriate diagnosis. In a teaching hospital, after an intern takes a medical history from a patient, the intern then presents that history to the rest of the medical team on rounds. The intern may preface this presentation—which typically is out of earshot of the patient—by noting that the patient is a “poor historian.” This is not (usually) said in a derogatory way, but rather expressed as an objective fact to inform others on the team that the story is going to be a bit patchy because the patient didn’t know many of the medical details.
Aside from the faintly ridiculous nature of the terminology—I’ll often wonder aloud to the intern whether perhaps that patient might make a better sociologist or archeologist—there is the implicit reminder, once again, that the full responsibility for effective communication is on the speaker, in this case that shifty, unreliable patient. So if the medical history presented on rounds is a muddled mess, it’s not because of the intern’s lack of effective listening or preparation. It’s because the patient wasn’t clear enough, or organized enough, or smart enough, or thorough enough, or loud enough. But, Bodie says, “both people are equally responsible. They co-create the meaning.”
Janet Bavelas, a Canadian researcher at the University of Victoria, conducted a set of ingenious experiments to illustrate this.1 She and her colleagues studied student volunteers who were paired up as speakers and listeners. The speakers had to tell detailed, dramatic stories about near misses or close calls in their own lives. The listeners had to, well, listen. Some of the listeners, however, were told that while the speaker was telling the story, they were to count in their head the number of official holidays (no-school days) from now until Christmas. The experiment was conducted in February so there were a fair number of holidays to account for. In a second version of the experiment, some listeners were instructed to press a button every time the speaker used a word starting with the letter “t.”
Unsurprisingly, the holiday counters weren’t very good listeners. They exhibited many fewer of the generic indicators of paying attention: saying “mm-hmm” or “yeah,” or nodding. And they showed hardly any specific responses—gestures or expressions that reflected the actual content of the story.
We are very familiar with the holiday counters, people with that semi-glazed look while listening. We know they are thinking about their to-do list, or last night’s to-the-buzzer basketball game, or whether the minestrone soup will run out by the time they get to the cafeteria, rather than focusing on what we are saying.
What I found interesting about this study was the use of the second type of distracted listener, the t-word counters. Unlike the holiday counters, these listeners had to focus extremely attentively on the speakers in order to catch those t-words. These listeners were able to provide the typical generic responses, nodding at the right time, saying “mm-hmm” at the right time. But it turns out they were equally lousy at giving any specific responses. That is, although they were listening attentively, they weren’t actually hearing the story being told.
But the most surprising effect of the two types of distraction was not on the listener, but on the speaker. When the listeners were not attentive, the speakers faltered at the climaxes of their stories. Their stories became choppier, more run-on, with extra filler words and awkward pauses. Sometimes the speaker ended up circling around and giving the ending again, or explaining and justifying the climax. (Remember, these were personal close-call stories that by definition were dramatic for the storyteller.)
I expected that the holiday counters would have caused more discombobulation in the speakers than the t-word counters, as they were off on a completely extraneous tangent, but in fact the experiment showed the exact opposite. It was the t-word counters who threw off the speakers the most. It may have been that the speakers could see that the holiday counters were obviously disengaged and so tuned them out as lost causes. But the t-word counters were tricky—they seemed engaged but actually weren’t. They appeared to be focusing hard on the listener but weren’t actually hearing the story, so their responses were mismatched both in timing and in appropriateness. This can be very disconcerting to the speaker, who can’t figure out if the story is connecting. The speaker ends up stumbling in the telling, saddled with a dramatic personal story that now seems sort of ridiculous, floundering about to end in a respectable manner.
This study demonstrates the crucial role the listener plays in the quality of the speaker’s story. The listener is coaxing the story to life. The better listener—the one who is paying attention to the story and letting the speaker know about that attention—helps the speaker deliver a smooth, logical, and compelling story. Bavelas titled her paper about these experiments “Listeners as Co-Narrators.” Gone is the standard idea of the listener merely slitting open the verbal bundle into which the speaker has dutifully packed his or her story. The listener is in fact a key element of the speaker’s ability to tell an effective story. With appropriate responses that are specific to the content of the story, the listener helps draw out the story, helps illustrate the story, and even helps shape that story into its best possible form.
If it seems odd to have the listener “shaping” the speaker’s story—this could be either cooperative or manipulative, depending on your point of view—think of what it’s like to speak to someone who is unable to respond. Perhaps you’ve visited an elderly relative with severe dementia in a nursing home or a comatose patient in a hospital. We’re always instructed to talk normally because you never know how much the other person can hear or process, and we always want to err on the side of making contact. However, it is profoundly uncomfortable to speak without getting any response or indication of understanding. We may start out recounting a recent happening in our lives, or giving an update on all of the family members, but after a while we falter. We feel silly talking into thin air. Our stories seem pointless and very quickly a creeping embarrassment overtakes us. Even though we want to talk to our loved ones in the hope that they are hearing something or maybe just appreciating a familiar voice, most of us dwindle off. It’s just too awkward.
“It’s a cooperative process,” Bavelas told me. “The speaker and listener roles alternate during the conversation. Each needs feedback from the other to know whether information is getting through.”
Doctors are taught to summarize or paraphrase what a patient says and offer it back to the patient to check for accuracy. “This is thought of as a neutral process,” said Bavelas, “but it’s not.” In her studies of psychotherapists,2 she observed that therapists make specific choices when they paraphrase what patients say. They can downplay certain details and emphasize others. They may reframe what the patient has said, add their own observations, even omit certain parts altogether. This certainly puts a good deal of power in the hands of the listener, in this case the therapist. Good therapists are mindful of this, and do so responsibly. Doctors, though, don’t spend nearly as much time as therapists reflecting on their communication skills and are not as skilled in using this “shaping” to its best effect.
When I read the research of Graham Bodie and Janet Bavelas, it resonated immediately with the communication challenges between doctors and patients that I’d been grappling with. We doctors complain a lot about patients being “poor historians” but have never really considered that our listening styles may be significant contributors to that poor historianship. After speaking with these researchers I tried to pay closer attention to my own interactions with patients. How effectively was I listening? How much—and how beneficially—was I shaping the patient’s story, if at all?
Not long after I spoke with Janet Balevas, I had a visit with Ross Leonard. This was our third medical visit together. Mr. Leonard is a man in his forties who I’d describe as a jack-of-all-trades. He’d worked at various times in construction, trucking, real estate, and commercial fishing. He hailed originally from Cleveland but sported a transcontinental employment history. Our first visit, some months prior, had not gone very well. He was annoyed from the get-go, impatiently telling me of the abdominal pain he’d had for the past many years. He reeled off the CT scans, endoscopies, and MRIs that he’d had—none of which had provided an answer. He ticked off on his fingers all the different medications he’d taken—none of which worked sufficiently. He brought in stacks of blood test results—none of which were abnormal. “So what’s going on?” he demanded within five minutes of the start of our visit. “Tell me why I’m having all this pain!” His pale, freckly skin was already reddened and leathered by his years of outdoor work, but he managed to redden even more when he pressed me on this.
I obviously was not the master diagnostician—or soothsayer—he was evidently hoping for because I was not able to come up with a quick and neat explanation for his pain. No matter what I said, or what approach I offered, he just kept demanding an answer that I could not give.
For complicated patients like this the best advice is to push aside the stacks of old records and start from the very beginning, taking a thorough and methodical history. At our second visit I attempted this, despite my trepidation regarding the black hole of time we could easily fall into. My concerns were well founded, as every question I asked resulted in a torrent of responses that ranged from the graphic details of his second colonoscopy to the medication recommended to him by the coroner in Vegas (which worked fantastically, until it didn’t). In retrospect, I could see that I was desperately trying to shape Mr. Leonard’s story. With each eruption of facts, I paraphrased back to him what I was hearing. But I made deliberate choices to emphasize what seemed relevant, and downplay or even omit what seemed further afield. (Pursuing how he came to be getting medical advice from the coroner in Vegas seemed like a low-yield avenue of diagnostic inquiry.)
Mr. Leonard, though, was not inclined toward the cooperative side of co-narrating. The more demanding he became, the more briskly I found myself slicing away at his story, trying to pin him down to the most basic, concrete facts. There was no Kumbaya moment of co-creating meaning. There was no harmonious synergy of our perspectives, just an ever sharper battling over the facts. Suffice it to say that visit number two did not go down in the annals of medicine as a paragon of doctor-patient communication.
So here we were at visit three, each of us eyeing the other warily. Mr. Leonard arrived with a list of demands, including a very specific brand of eye drops, an MRI of his abdomen—”and make sure it’s with contrast, not without”—a letter for his employer saying he was too sick to work, and a prescription for Viagra. Before stepping off from the riverbank into what promised to be yet another estuary of exasperation, I tried to meditate on what I’d been learning from these communications researchers. Was there a way that I could be a more productive listener? Could I adapt my responses to Mr. Leonard in a manner that would make his story more coherent and meaningful? Could I adjust my reactions to create a more trusting environment in which his narrative might flourish?
Janet Bavelas had talked to me about the importance of “grounding,” the periodic acknowledgment to the speaker that he or she is being heard.3 This could be a nod of the head or saying “mm-hmmm.” This could be repeating back a phrase just after it was spoken, or making a comment that indicates you understood what was just said. So I tried that with Mr. Leonard. After every few statements I made sure to let him know that I’d heard him, that I’d gotten it and was still on the same page with him. I kept good eye contact; I encouraged whenever I could.
But it didn’t seem to be working. Mr. Leonard barreled forward like the eighteen-wheelers he used to drive, annoyed that I wasn’t producing an answer for his abdominal pain, clearly determined to march onward until his four demands were met. When it comes to grounding, I learned, an additional step is needed. After the speaker has spoken and the listener acknowledges that the speaker has been heard and understood, the speaker needs to somehow acknowledge that acknowledgment.4 This may sound like an incessant Mobius strip, but in most conversations this happens so instinctively that it’s never even noticed. But with Mr. Leonard, it was not occurring and the absence was clearly felt. Because it wasn’t occurring, we weren’t actually having a conversation. Once one key element dropped away, the whole enterprise came toppling down. No wonder both of us were cranky by the end of the visit.
I finally gave up and switched from conversation mode to negotiation mode. I laid out my terms. I told Mr. Leonard I would write the letter to his boss but would not excuse him from work; I’d describe his medical issues but would not render judgment about his fitness to work. I’d write the prescriptions for the fancy eye drops and for the Viagra, but neither was likely covered by his insurance, so I told him he should be prepared for jaw-dropping costs at the pharmacy.
The MRI, however, I would not order. He’d had one in the past year that didn’t show any pathology and there was no medical indication to order another. In fact, I told him, I would not order any further tests until he kept a detailed symptom diary that we could examine at the next visit. To my surprise, Mr. Leonard acceded, though reluctantly. He grudgingly agreed to the terms and we parted on a slightly less fractious note.
There is much that goes into effective communication, I was learning, though Mr. Leonard reminded me that it doesn’t always go by the book. I loved the idea that a doctor and patient could be co-narrators in the story. It’s an ideal that I want to strive for, but I also have to accept that the reality of doctors, patients, and illness is a lot more unwieldy. And if all else fails, there’s always the coroner in Vegas.
But let’s turn back to Morgan Amanda Fritzlen and her doctor, Juliet Mavromatis, who were on the verge of firing each other. The patient was determined to seek a bone marrow transplant for her worsening symptoms, and the doctor was horrified by this dangerous and medically reckless idea.
Morgan Amanda feverishly researched hospitals around the country that might consider her for a bone marrow transplant. But meanwhile something had to be done about her worsening weakness, fevers, pain, and joint swellings. The rheumatoid arthritis, or whatever her actual disease was, had wasted her down to skeletal proportions.
Because this was most likely some sort of autoimmune disease, the hematologist began plasmapheresis—a wholesale filtering of the entire blood system to remove harmful antibodies. Plasmapheresis is a stopgap measure, since the body continues to make antibodies. However, it can sometimes help during an acute flare-up of an autoimmune illness. Before plasmapheresis can even begin, though, a catheter must be surgically inserted into the subclavian vein, a major vein that runs under the collarbone. This is typically a straightforward procedure but nothing was ever typical or straightforward for Morgan Amanda.
In her weakened and malnourished state, her immune system could not fight off infections arising from the catheter placement and the hospital environment. Like an army of Civil War proportions, with one row of soldiers cresting the hill after another, the pathogens kept coming. All told, five waves of infection ravaged her body during that hospitalization, including the dreaded MRSA (methicillin-resistant staph aureus) and VRE (vancomycin-resistant enterococcus).
The infections decimated what little reserve she possessed. A feeding tube was inserted into her stomach because she couldn’t eat. But in her hyperinflammatory state, her body couldn’t absorb the nutritional formula, and so she continued to waste away. During this time, the Emory bone marrow transplant team came by to evaluate her as she had requested. But one look at her was all they needed. “A bone marrow transplant would kill you” was their blunt assessment.
Morgan Amanda confided to her hematologist that she could no longer work with Juliet and was planning to fire her as her primary-care doctor. “Don’t make rash decisions while you are this sick,” the hematologist told her. “It’s obvious that Dr. Mavromatis cares about you.” Everyone around her echoed this, advising her to ride it out with Juliet. The unspoken warning was “How are you ever going to find another doctor?”
But Morgan Amanda didn’t want to be dependent on someone she couldn’t completely trust. She described it to me as like being in a boat with someone who was rowing in the opposite direction.
Because of the hospitalist system at Emory, Juliet was not directing the medical care during this hospital admission, though she remained in continuous consultation with the inpatient team. Juliet visited her patient in the hospital shortly before Christmas. It was the first time they’d seen each other since the explosive meeting in Juliet’s office three weeks prior. Neither acknowledged what had transpired. The visit was cordial but restrained. It was strictly business on both ends: just reviewing the plasmapheresis treatment plan. There was no physical contact—no physical exam, not even a handshake.
“I was so tired,” Morgan Amanda remembered. “I had no bite left.”
Juliet herself was wary. She was casing the situation, as she put it later, to see if it was possible for them to rebuild trust and work together, or whether she’d have to deliver the letter of resignation that still sat in her desk drawer.
Morgan Amanda reiterated that she felt the bone marrow transplant was something she needed to consider. She knew that plasmapheresis was only a temporizing measure, a raft that might keep her afloat for a bit but could not pull her out of the churning waters that were engulfing her. Weary desperation was palpable in her voice, and Juliet heard this.
Juliet still had strong doubts about the transplant option, even about the diagnosis of rheumatoid arthritis, but she chose not to voice them at this moment. She had voiced them before, and repeating them wasn’t going to help. But she felt she’d done the right thing in her office three weeks before by stating her clear opinion to Morgan Amanda. She felt she owed her patient an honest opinion, no matter how much it conflicted with her patient’s desires.
However, the truth was that Juliet and the medical profession didn’t have any other treatments to offer. So instead, she voiced her support for the herculean efforts Morgan Amanda was investing. These were not platitudes; Juliet was immensely impressed by her patient’s determination, and Morgan Amanda heard this.
Juliet also knew that Morgan Amanda—by sheer tenacity and perseverance—would get herself evaluated by a transplant program, with or without Juliet as her doctor. Although it was certainly tempting to wash her hands of the case completely, Juliet knew this would not be good medicine. It wasn’t good medicine to force her patient to find a new doctor—a process that could take months or in this case even a year—and then to have that new doctor start from scratch. It was better medicine to remain at her side as her primary-care doctor, to work to regain her trust. Beyond that, it simply felt right to Juliet as a person. She was not one to walk away from a difficult situation, so she decided to give it another shot. The letter would remain in her drawer.
Morgan Amanda had heard about the transplant program at another hospital in Atlanta. Juliet offered to look into it and she did. She made several phone calls and spoke personally with members of the transplant team. And so when she called her patient to say that unfortunately they—like Emory—did not do transplants for autoimmune disease, Morgan Amanda nevertheless felt Juliet had given the boat a genuine stroke in her direction.