Every Patient Tells a Story

by Lisa Sanders

  CHAPTER FIVE

  Seeing Is Believing

  Dr. Stanley Wainapel walks carefully to the door of his office to greet his first patient of the day. It’s a brutally humid July morning and even here, deep in the recesses of Montefiore Medical Center in the Bronx, a heavy dampness has overwhelmed the air-conditioning. Wainapel is a tall man in his early sixties. A shock of sumptuous white hair frames a handsome round face creased with lines that deepen when he smiles. His light brown eyes are magnified behind black wire-rimmed glasses that he adjusts frequently.

  Wainapel runs the Department of Rehabilitation Medicine at Montefiore. He introduces himself to Anna Delano, the heavyset, middle-aged woman who has come to see him about her painful knees. As she makes her way to the chair in front of his desk and carefully lowers herself into it, he commends her for braving the humidity and apologizes for the ineffective air-conditioning.

  Anna looks up at Wainapel still standing in the doorway. “Are you talking to me?” she asks, voicing her confusion in a nasal New York accent. “Because, you know, you’re not looking at me.”

  Wainapel whips his head around to the spot where the voice now originates. Embarrassed, he smiles, revealing a deep dimple. “Sorry,” he tells her, “I have a vision problem.”

  Here’s the nature of Stanley Wainapel’s vision problem: he’s blind. Wainapel was born with a form of retinitis pigmentosa, a rare genetic disorder that started him out in life with severe night blindness and tunnel vision. Over the years, the narrow windows through which he could once see became progressively smaller until they finally closed completely, leaving him unable to perceive any color or shape, and very little light. In his right eye, his “good” eye, he can sometimes detect movement. In his left eye—nothing.

  Because of the indolent course of this disease, Wainapel could see well enough to make it through college, medical school, a four-year residency in rehabilitation medicine, and the start of an extremely productive academic career. Wainapel says he feels certain that his visual defect hasn’t kept him from being a good doctor. A successful career culminating in his current role as director of rehabilitation medicine, and a crowded schedule, suggest that he’s right. My question is: how is that possible?

  Vision has long been considered the most valuable of our five senses. Biologically it is certainly preeminent. More than 50 percent of the human brain is devoted to sight. Thinking may be how Descartes knew his world, but for the rest of us, seeing is believing. We trust what our eyes tell us. When Chico Marx, pretending to be Rufus T. Firefly (Groucho Marx) in the 1933 film Duck Soup, is caught red-handed with another woman, he denies the obvious infidelity and demands indignantly, “Who are you going to believe? Me or your own eyes?” It’s funny because for most of us, that’s no choice at all.

  The same is true in medicine. William Osler emphasized the importance of observation in medicine: “We miss more by not seeing than by not knowing,” he taught his students. Even the language of patient care emphasizes the central role of vision. We “see” patients in the office; we “watch” them overnight in the hospital. We tell patients what to “look out” for. We “oversee” their care.

  Well before a doctor begins the refined maneuvers that make up what is usually considered the physical exam, she will start to collect information on the patient as soon as she lays eyes on him. Is he young or old? Does he look healthy or sick? How does he walk? Is he in pain?

  Once the patient actually gets to the exam room, much of the physical exam relies on what doctors can see—they look at the skin and the eyes, peer into the ears and mouth. They check the color of the tongue, the nails, the stools. Many of the tools used to perform the exam allow better views of the ears, nose, mouth; the equipment used to measure blood pressure, temperature, oxygen saturation, and blood glucose report this data visually. The tests ordered to provide additional information about the patient often convert that data into a visual form: diagnostic imaging is the most obvious, but an EKG is a visual representation of the electrical activity of the heart, and an electroencephalogram (EEG) represents the working circuitry of the brain. Of course, these studies are often interpreted by specialists—doctors don’t always read them themselves. Still, given the importance of sight in medicine, it’s hard to imagine making a diagnosis without it. How can a doctor “see” patients if she can’t see the patient?

  No one seems to know how many blind physicians there are practicing in the United States. A Google search (“blind physician”) turns up a dozen names. Reading up on those that I found, I see that most work in specialties like psychiatry, where routine patient contact consists primarily of listening and talking. A couple, like Wainapel, have gone into rehabilitation medicine. I wanted to meet Stanley Wainapel to understand the value of vision in the practice of medicine and in making a diagnosis. Who would better know the true worth of that sense than one who once had the ability to see and now must work without it?

  Confronted with the patient’s confusion that morning, Wainapel deftly deflects the woman’s question with humor. “I’m not looking at you because you are so beautiful I had to turn my eyes away.” They both laugh and once the discomfort of the moment passes, Wainapel moves confidently back to his desk and starts asking the patient about her knee pain.

  It started almost a year ago, she tells him, and has been getting steadily worse. She’d seen her doctor. He sent her to two surgeons. Predictably both recommended surgery. She came to Wainapel because that option had no appeal. “I’ve lost thirty pounds and that helps, but not enough. It’s hard for me to even walk. Now I’ve got to use a cane.” She also complains of wrist pain for the past couple of weeks. As she tells her story Wainapel sits forward slightly, his head cocked, eyes fastened on the patient’s face—a picture of close attention. He asks her a few questions and jots down notes on a pad. From where I’m sitting I can’t see what he’s writing, but I notice that he uses his left thumb to keep his place on the page as he writes up the details of her complaint.

  After reviewing her medical history and medications, he asks her to sit on the examining table that takes up the other half of the room. I watch as he skillfully touches and maneuvers her shoulders, elbows, wrists, and hands to identify the source of her wrist pain. “It really hurts right there,” she tells him as he holds her wrist. “Here? Okay. Hmm.” Eyes closed, Wainapel lightly touches her forearm to identify the origin of the pain. “That’s between the ulnar stylus [the prominent bony bump on the pinky side of your wrist] and the pisiform [the furthest outside bone of the wrist]. Hmmm. No numbness? No weakness?” (No and no.) “Sounds like a sprain of the ulnar collateral ligament. No trauma?” (No.)

  Wainapel moves on to her knees. He assesses their range of motion—her gasps reveal how much her knees hurt with even ordinary movement. He feels her ankles and feet; he checks for evidence of swelling and joint instability. He asks her to lie on her back so that he can evaluate her hip joint. Sometimes pain felt in the knee actually originates in the hip. But not in this case. She has full range of painless motion in the hips.

  They return to their seats and Wainapel walks her through his thought process. The wrist pain probably comes from a sprain—perhaps from the way she pushes herself up from a chair to stand. Still, it’s essential to make certain it’s not a fracture. One of the small bones in the wrist can break and pain may be the only clue—so she’ll need an X-ray. About the knees—he’ll need to get the X-ray report from her orthopedic surgeon. Until then he recommends physical therapy, Naprosyn (an anti-inflammatory medication like ibuprofen), and a trial of a glucosamine and chondroitin combination, an over-the-counter remedy sold in health food stores for joint pain. He reviews the evidence on this second medicine: “Studies have shown that the glucosamine and chondroitin combination doesn’t repair joints, but it can bring some relief in the group of patients with the most painful knees. If it can help you move, why not give it a try?”

  As he speaks, I look around the office. I wasn’
t surprised that Anna hadn’t immediately known that her doctor was blind. Nothing about him or his office suggests that he has any disability at all. In addition to the usual framed degrees, his office walls are covered with colorful oil paintings, photographs, posters. Bookshelves loaded with medical textbooks and references cover an entire wall. Wainapel wears glasses—not dark glasses, regular glasses. And his eyes appear to focus on your face when he’s speaking—so long as you don’t move. The only clue to his vision deficit is the two white canes discreetly tucked away against the bookshelf.

  Before the patient leaves, Wainapel dictates a letter to the patient’s doctor. He easily reels off a precise summary of all the patient has told him. “This way they can see that I have no secrets and that I remember everything. That it’s my eyes that are affected—not my brain. And, of course, if I make a mistake, the patient has a chance to correct me.” I steal a look at the notes he’d taken while talking to the patient. They are unreadable—not in the clichéd way that doctors’ handwriting often is, with squiggles and lines that require careful deciphering. Despite his best efforts he’s written his notes so that the dozens of lines of large loopy script are overlaid on top of one another—condensed into a single line of thick, indecipherable scribbles. I’m surprised. It’s easy to forget that he can’t see. Luckily he doesn’t depend on these handwritten messes. He routinely dictates his notes on the visit and they are typed and placed in the chart. If for some reason the dictation system doesn’t work and his report is lost, Wainapel tells me earnestly, his secretary can use these notes to reconstruct it. Hearing this, I make no comment. He can’t see the mess his notes have become and it doesn’t seem necessary for me to point it out to him.

  As the visit draws to a close, Wainapel calls in his secretary, who writes out the prescriptions along with the referral for physical therapy. She positions Wainapel’s hand so that he can sign the pages in the proper spot, then walks the patient out to her desk to schedule a follow-up appointment. In all, a perfectly ordinary encounter.

  After the patient has gone I ask Wainapel why he didn’t let her know he was blind before she came—if only to prevent that awkward social moment. He seems surprised by the question. “Why should I?” he asks. “If it were important for my work as a physician I would, but it’s not.” With a sly smile he adds, “If I can find the patient, chances are excellent I’ll be able to help them. With me, locating the patient is the hardest part of my job.

  “Observation is certainly the most important component of the physical exam, but there are other ways to observe than with your eyes,” Wainapel tells me. He is a good listener, he points out. He prides himself on his ability to get the full history, to allow the patient to tell him what he has, and considers himself an expert in the physical examination of the musculoskeletal system.

  “I knew I was going to be blind and so I made my choices based on that,” he adds. “And because of these choices—my specialty for one—I think I can be an excellent doctor who happens to be blind. I don’t know that I could say that if I were in another specialty.” What makes this specialty better? “A lot of things. There’s the obvious: the patients who come in to see me have problems in parts of their bodies that I can examine directly. I’d make a rotten surgeon or ophthalmologist—they need to be able to see in order to do their job. I can do mine with my hands, my ears, and most importantly, my brain.”

  Comparing his practice to my own, I get a sense of how his specialty allows him to excel despite his limitations. The patients who come to see him are in pain, but the causes are chronic, not acute. The arm or leg they complain of is unlikely to be broken or infected or bleeding. He’s not that kind of doctor. And because of the chronic nature of their problems, he has the time to accurately diagnose and treat most of the patients who come to see him.

  And yet even within this specialty there are cases where the loss of sight has made a diagnosis difficult. Wainapel tells me about an elderly woman who’d come to him for rehabilitation after hip replacement surgery. Before her surgery she had been active and healthy, she reported—limited only by the pain in her hip. After the surgery she remained weak and unsteady on her feet despite weeks of rehab. She still needed a walker to keep from falling and had difficulty getting through the strengthening exercises. Wainapel was stumped. He examined her repeatedly. The surgical wound was well healed. The joint was freely mobile. Her strength and reflexes seemed normal, and yet she was unable to get around on her own.

  A social worker provided the clue that solved the case for him. She was struck by the fixed, sad expression on the woman’s face. Could she have Parkinson’s disease? she asked Wainapel. It was a good thought—and something he couldn’t have seen. “I walked over to the patient and by golly she had cogwheeling and everything.” Cogwheeling is a jerky motion in the joint when that joint is passively moved—a cardinal symptom of Parkinson’s. The disease slows voluntary movement and causes instability. No wonder she wasn’t getting better. Once her newly diagnosed Parkinson’s was treated, the patient improved rapidly.

  Of course, from Wainapel’s and the patient’s point of view, this case wasn’t a failure but a success. He was able to help this woman return to her previous state of vigor and activity—eventually. And yet the case shows that even in the narrow range of patients seen in this specialty clinic, there are those for whom sight plays an important and irreplaceable role. It was a success ultimately because in the patient population Wainapel cares for, there is time to figure things out. That is not always the case in other specialties.

  The Look of Illness

  In medicine, sight becomes essential when rapid assessment and action are required. You can’t imagine, for example, a blind emergency room physician. In an emergency you need to be able to collect information about the patient rapidly, efficiently. You never know what is going to come through the door and so you have to be ready for anything. Throughout medical school and residency training, I was told repeatedly that I needed to learn what “sick” looks like because it would provide one of the most important clues about how ill a patient really was.

  This is not a new idea. Some of the earliest writings we have are devoted to describing this look. Hippocrates begins his work on prognosis with this clue: “If the patient’s normal appearance is preserved, this is best; just as the more abnormal it is, the worse it is.” He goes on to describe the face of someone who is going to die: the nose is sharp, he tells us, the eyes sunken, the temples fallen in, the skin stretched and dry with a dusky color. Hippocrates approaches the difficulty of caring for a patient who is too sick to survive with the same pragmatism that characterizes the oath that still carries his name: “By realizing and announcing beforehand which patients were going to die, [the physician] would absolve himself from any blame.” This wisdom has been handed down through the centuries of medicine in all its various forms.

  By the time most doctors finish training, they have at least one story about the patients who taught them what sick looks like. It’s one of those rites of passage that can’t be forgotten. Jennifer Henderson was the patient who taught me the look of the critically ill. And it was in caring for her that I discovered the unexpected limitations of this assessment. Caring for Jennifer, I learned that recognizing sick is only a first step.

  I met her on my first night on call in my first year of training. I still remember the excitement and terror that long-anticipated event carried for me. Clark Atkins was the resident charged with supervising my training that first month. He had been an intern himself until just three days earlier when this new year had started and he had risen from intern to resident. Now it was Clark’s turn to pass on what he’d learned. We hurried to see a new patient—Jennifer—who had already been moved out of the emergency room to a private room on the fourth floor.

  One of the most important decisions that must be made about a patient, Clark instructed as we climbed the stairs to the patient’s floor, is how much supervision and monitoring that
patient will need. Emergency physicians are usually good at making this determination, but because it is so important, it’s essential to see the patient for yourself to make certain you agree with their decision. I stopped to jot this down in the little book I kept for recording the secrets of patient care, then hurried to catch up.

  Jennifer was sitting up in her bed, leaning forward, an arm planted on either side of her knees. A plastic oxygen mask fogged with breath arched over her nose and mouth like some modern version of a harem girl’s veil. She looked up dully as we entered the room, distracted by the work it took to breathe. The thin chart from the ER said that she was thirty-one years old, but to my eyes she seemed much older.

  She was a small woman—slender with delicate facial features coarsened by what had probably been a very hard life. Her curly bleached-blond hair was marred by a thick stripe of black at the part. Her eyes were a light blue color that might have been strikingly beautiful once but now seemed washed out, lifeless. Her skin was tanned and leathery from the sun, and as she spoke a block of unexpected darkness along the line of her cigarette-stained teeth revealed that she had lost a couple. Her arms were wiry, her clavicles protruding, and the skin on her face looked a size too large. The muscles in her neck were prominent and contracted with every breath she took as she struggled to bring in enough air despite the oxygen provided by the mask.

  Clark nodded at me encouragingly and I stepped up to the bed and introduced myself. I explained that we were her doctors while she was in the hospital and asked her why she had come. She hurt all over, she told me. She was a heroin addict. She was doing okay. Until last week. Then she got this headache. Her sentences came out in short bursts, a few words at a time, punctuated by deep breaths. She’d had night sweats. And a fever. And now she felt out of breath. All the time. And it hurt. When she had to breathe.