Authors: Jerome Groopman
It may seem presumptuous to expect a patient short of breath like Blanche Begaye or in pain like Maxine Carlson to help a doctor think. But what we say to a physician, and how we say it, sculpts his thinking. That includes not only our answers but our questions.
Chapter 4
Gatekeepers
I
MAGINE WATCHING A TRAIN
go by. You are looking for one face in the window. Car after car passes. If you become distracted or inattentive, you risk missing the person. Or, if the train picks up too much speed, the faces begin to blur and you can't see the one you are seeking. "That's what primary care medicine is like," Victoria Rogers McEvoy told me. McEvoy is a tall, lean woman in her fifties with short-cropped blond hair and steady eyes. She practices general pediatrics in a town west of Boston. "It's much harder than the proverbial needle in a haystack, because the haystack is not moving. Each day there is a steady flow of children before your eyes. You are doing well-baby checks, examinations for school, making sure each one is up to date on his vaccinations. It can become rote, and you stop observing closely. Then you have the endless number of kids who are cranky and have a fever, and it's almost always a virus or a strep throat. They can all blur. But then there is that one time it's meningitis.
"The blessing of pediatrics, but also its curse, is that almost all of the children who come to the office turn out to be healthy or have a minor problem," McEvoy elaborated. A blessing, of course, that the kids are fine, but a curse because you can become lulled by the monotony of the mundane. With that in mind, she asks herself one pivotal question each time she sees a child, in essence the same question Pat Croskerry and Harrison Alter ask about each patient in the ER: Does he or she have a serious problem? "Every pediatrician should consider that as soon as the child comes into the room." And because many of the patients are infants and toddlers who can't communicate what they are feeling, "your powers of observation have to be particularly acute."
Essentially the doctor gets all of the information from the parents, which means she has to consider both the parents' degree of familiarity with their child and their subconscious or emotional reaction to the possibility that something is wrong. This reaction can be extreme: some parents deny the existence of a serious problem; others exaggerate what is normal because of their anxiety. Parents have reported that their child was lethargic and not eating, information that would trigger a high level of concern in the doctor; but with one glance she would see the child playing happily on the examining table and grinning. "The story was completely overblown, and you knew immediately that the kid was not seriously sick." Then there was the corollary, where a mother said that her baby felt a little warm but was otherwise okay. McEvoy was stunned to see the child breathing rapidly and lying limp in the mother's arms. The child had pneumonia. McEvoy, like all pediatricians, looks for certain key features: Does the child smile, play with toys, actively walk or crawl, or is she passive, not resisting when a foreign instrument like a stethoscope is placed on her chest?
Pattern recognition in pediatrics begins with behavior. And the art of pediatrics, then, is to further study the child while simultaneously interpreting what the parents report. This melding of data, McEvoy said, is not a skill set that comes from a textbook, because it requires a level of self-awareness by the doctor about his own feelings toward the family. While first impressions are often right, you have to be careful and always doubt your initial response. "It's a foolish pediatrician who does not listen closely to the parents and take seriously what they are saying," McEvoy said. "But you need to filter what they say with the child's condition." I told her the story of my first child, Steven. My wife, Pam, and I had returned from living in California to the East Coast. It was the July Fourth weekend, and we stopped in Connecticut to visit her parents. Steven was then nine months old, and had been irritable and not feeding well during the cross-country flight. When we arrived at Pam's parents' house, he was restless in the crib and then had a dark, malodorous stool that was different from his usual bowel movements. We took him to an older pediatrician in town; the doctor glanced at Steve and quickly dismissed Pam's worries that he was seriously ill. "You're overanxious, a first-time mother," the pediatrician told her. "Doctor parents are like this." By the time we arrived in Boston, Steve was grunting and drawing his legs up to his chest. We rushed him to the emergency room of the Boston Children's Hospital. He had an intestinal obstruction requiring urgent surgery. Pam and I could only conclude that despite his many years in practice, the pediatrician in Connecticut had made a snap judgment—that Pam was neurotic about her firstborn, not a reliable reporter of a meaningful change in her baby's behavior and condition.
The pediatrician in Connecticut watched the train go by, hour after hour, day after day, year after year after year. I asked McEvoy, who had also been in practice for decades, "How do you keep your eyelids open?"
"I prepare myself mentally before each session," she replied, just as she used to prepare herself mentally before a competitive tennis match. In 1968, when she was in college, McEvoy was ranked third in the nation in tennis, and played at Wimbledon. As an athlete, she learned to focus her mind, to anticipate the un expected spin, and not to be lulled into complacency despite her expertise. But beyond the skills from sports, "you simply have to control the volume," she said. "And the truth is that most pediatricians stay afloat by seeing large numbers of children each day."
Before McEvoy took her current job, she worked in a busy group practice in another Boston suburb. At the time, she had four children of her own at home. She spent each day tending to dozens of patients and their parents. "But it was the night call that was killing me," she said. She was paged every twenty or thirty minutes, and the calls continued into the next morning. If there was serious concern based on the telephone contact, then McEvoy returned to the office and saw the child, regardless of the hour. "After doing this for a few years, I was beginning to burn out. I just couldn't stand it." McEvoy found herself becoming irritable and bitter. "I was so exhausted from this brutal schedule that at times I said things to parents that were curt and sharp, and later regretted saying them," she told me. "Pediatrics was no longer fun. Most worrisome, it impaired my thinking. I would immediately assume that the parent was telephoning inappropriately. I was just so exhausted."
McEvoy's story of relentless work and sleep deprivation reminded me of the worst moments of my own internship and residency. There were times when I was so spent, and yet still pulled in so many directions by patients in need and nurses demanding action, that all I wanted to do was deflect their requests. Subconsciously, I found myself minimizing the severity of a symptom or assuming that an aberrant laboratory result was an artifact rather than a sign of a serious problem. "As soon as the pager went off, I was angry," McEvoy confessed. "The great danger is that you stop caring. The goal of each day and each night was simply to move everyone through, to clear the decks, rather than to deliberately and expertly care for those who needed care and reassure those who did not."
McEvoy left that practice. In the course of a day, a full-time pediatrician may see two dozen or more children. Now she limits the number of patients she will see in any single session, despite the pressure to schedule brief visits and maintain a high volume. Many doctors who provide primary care do this because they feel they simply cannot function properly otherwise. Some suffer a fall in income. Others have set up so-called concierge practices, charging a premium over the insurance reimbursement and limiting the number of patients they see. Still others move into administrative roles, seeing fewer patients but sustaining their income. McEvoy chose this last path. Her group is associated with Partners Healthcare and the Massachusetts General Hospital. This linkage largely remedied the problem of relentless night calls; the Partners group hired experienced pediatric nurses who take the phone calls at night. These nurses offer advice to the parents, but if a family insists on speaking directly to the doctor, then the doctor will be paged. "This is the only way to maintain one's sanity," McEvoy said. "And the care is much better, because the doctors are not burned out."
McEvoy devotes half days to direct clinical care, seeing about a dozen children; she spends the rest of the day largely on aftercare: the forms that must be filled out, the documentation of visits, the review of records, the preparation of letters of referral to specialists, and—most trying—the negotiations with insurers about expensive tests like MRIs. Recently, McEvoy published an article in the
Harvard Medical Alumni Bulletin
that received wide notice. It was titled "The Incredibles" and argued that to fully function as a primary care provider in today's environment requires the superhuman powers found only in comic-book heroes:
...Docs of Steel! Faster than a speeding bullet, yet with no stone left unturned. Paperwork? Bring it on! ... As we draw our capes around us and prepare to plunge into the next pit of human suffering, we pause only to check schedules, to ensure that productivity remains on target. Juggling BlackBerries, cell phones, electronic medical records, notes from specialists, lab results, patient phone calls, referrals, radiology requests, beepers, handheld formularies, patient-satisfaction surveys, color-coded preferred-drug charts from insurers, and quality report cards from HMOs, we forge on, as our patients wait, shivering expectantly ... The superhuman demands of our specialty have either morphed us into steely-eyed combatants or reduced us to blithering, overwhelmed, white-coated globs of jelly. We now practice triage medicine—surrendering time-honored bedside roles to hospitalists; slicing face time with patients; retreating to administrative roles; appending MBA, Esq., or MPH to our names to shield us from the line of fire.
Alas, serving as a gatekeeper to limit access is not what most doctors envisioned when they chose primary care. "Frankly, now what really sustains me is the relationships with the family," McEvoy said. Many of the families that McEvoy cares for are immigrants. Her practice is located in a town where many Mandarin and Farsi speakers live. "Determining a child's verbal development is a key challenge for the pediatrician," McEvoy said, "and it is made even more difficult with families where the language is not English." Effectively extracting accurate information from parents about their child's milestones is often quite difficult. "Again, it can go both ways," McEvoy said. "Some parents are absolutely hysterical that their child is not developing quickly enough, and fear that it's an early sign of autism. Other parents sugarcoat the difficulties their children are having because they are terrified that their kids aren't intelligent enough." In today's culture there is tremendous pressure even on toddlers to develop the skills to succeed; parents meet any apparent deviation from a path of achievement with grave concern. This is no longer restricted to the middle or upper classes; it is widely recognized that education is the route forward in our society, and abilities in science and technology are particularly prized among a child's talents.
Recently, McEvoy had been "burned" by initially taking at face value the report of the Yazdans, an Iranian family who spoke Farsi at home. Their daughter, Azar, was a curly-haired toddler who averted her large brown eyes when McEvoy greeted her and did not speak at all during the visit. When McEvoy pursued these observations with Mrs. Yazdan, she said, "Oh, yes, Azar talks quite a bit at home." On a later visit, McEvoy again observed that Azar did not speak. This time, she investigated the issue further and contacted the girl's school, and discovered that Azar was not talking and no one was speaking to her. The teachers assumed that, because of the language difference, Azar did not understand enough English to respond verbally. "The little girl was autistic," McEvoy said. But it took nearly a year before this diagnosis was confirmed. "It is all made difficult because a pediatrician has such limited time during a visit," she said, "so you might be misled by thinking that this is just a shy little kid and you don't speak her language."
McEvoy, thinking out loud with me, also wondered whether delays in diagnosis reflect a wish to avoid snap judgments. "The last thing you want to do is plant the seed of doubt with parents," she said. "It's devastating for a loving parent to think that their child may not be normal. And the range of what is normal at different ages can be quite large." The mother or father, McEvoy continued, immediately concludes that the child will be placed in a special school and has no chance at an excellent college.
"This is one of the great tests of a pediatrician," McEvoy said, "how you play this balance between raising unnecessary fears and ignoring what may be a serious developmental issue." A seasoned pediatrician has to finesse this particular terrain, McEvoy said, bringing up the need for more observation and perhaps testing without unduly alarming the family. She does this by taking time to explain to the parents that, indeed, some intelligent children may not learn to read as early as others; that some are shy while others are gregarious; that some smile readily with strangers and others are reticent. "I begin by saying that there is a very wide range of what is normal and emphasize that everything may turn out to be okay." Despite this cautious introduction, "some parents take their eighteen-month-old to five different specialists if the child is not speaking much," McEvoy said. The parents who have raised children already are usually more relaxed, and say, "Okay, so she is a late talker."
"It's often a shoot-the-messenger scenario," McEvoy said. Even when she gingerly approaches the question of a developmental disorder with a family, she braces herself for a strong and sometimes angry reaction. "This is when patients have left me," she said, "families that just didn't want to hear that there may be autism or some other serious problem."