The Secret Language of Doctors

by Brian Goldman

  The other clue is how patients with health anxiety react to expressions of skepticism about the seriousness of their symptoms. If I had a dollar for every time a patient has said “I only come to the ER if it’s serious,” I’d be very wealthy. Patients with health anxiety are often repeat customers (a subset of what we call frequent flyers). When the ER physician tries to get such a patient to reflect upon his or her many visits, the patient often replies, “But this is the first time I’ve come in with this problem.”

  I find that patients with health anxiety get offended when you call them on it. They are very skilled at playing the ultimate trump card: that they may be right about having a life-threatening illness. If I’m meeting them for the first time, I have no idea whether they are truly ill or indulging in a pattern of behaviour. So, like most colleagues I know, I take them at their word and order tests such as CT scans of the head, chest and abdomen that I wouldn’t dream of ordering if I knew the patient was merely anxious.

  In a supreme irony, many such patients undergo CT scans—utterly oblivious that doing so increases the risk of cancer caused by the radiation needed to do the scan. A 2013 study published in JAMA Internal Medicine found that most patients undergoing CT scans underestimated the amount of radiation delivered during a scan. A third of those surveyed who were getting a CT scan didn’t even know the test exposed their body to radiation. Just one in twenty believed the scan would increase their chance of getting cancer.

  A 2007 study by researchers from the National Cancer Institute estimated that the 72 million CT scans done in the U.S. that year would result in 29,000 future cancers. And yet, of those surveyed in the 2013 study, most were more concerned about when they could eat following the test and whether their hospital parking costs would be reimbursed.

  On the other hand, for many of the worried well who inhabit the RAZ , the dosage of radiation from a CT scan is perfectly fitting: it’s one more thing to get anxious about.

  * * *

  There’s a subset of anxious patients that deserves special mention. Unlike the status dramaticus patients who seem to pluck free-floating anxiety out of thin air, the patients I’m talking about have a bona fide medical condition; it’s just that they’re more anxious about it than others.

  Here’s a made-up encounter with a patient that represents a scenario that I’ve seen so many times in my career I can’t even count them. A patient I’ll call Iris comes to the ER with shortness of breath. Iris has asthma, a frequent cause of difficulty breathing. Over the course of my ER career, I’ve probably seen about 2,500 patients with asthma. I’ve read as many articles and attended as many continuing-education lectures on asthma as almost any other condition. I’ve read the current guidelines and I’m quite comfortable treating patients with asthma.

  But Iris is different. For one thing, Iris is pregnant. Asthma is no more prevalent in pregnant women than in the general population. Like all patients with asthma, pregnant women with the condition can develop respiratory failure and can even die of it. The bottom line—whether the patient is pregnant or not—is that you have to treat an asthma attack.

  When I examine Iris, I can hear loud wheezes emanating from her chest. She is breathing at a brisk thirty breaths a minute. My immediate concern is that, without treatment, she’ll soon get tired of working so hard to breathe and go into respiratory failure.

  The treatment of severe asthma in pregnancy is virtually identical to that of non-pregnant patients. We prescribe inhaled beta adrenergic bronchodilators such as Salbutamol, which open up the air passages, along with inhaled and oral corticosteroids such as Prednisone to reduce the inflammation in the airways that is part and parcel of an asthma attack.

  Unfortunately Iris is paralyzed with anxiety about taking any medication for asthma because she is pregnant. She doubts my word at every turn.

  “I don’t want to harm the baby,” says Iris.

  “If you can’t breathe, that will harm the baby too.”

  “What are you proposing?”

  “I’d like to start you on inhaled bronchodilators as well as steroids,” I reply.

  “Are steroids safe in pregnancy?” she asks.

  “Yes, they are. We give them to pregnant women all the time.”

  “But Prednisone has a Level C risk,” says Iris. The look in her eyes and the tone in her voice say that from now on she’ll take everything I say with a grain of salt.

  Let’s back up a bit. The U.S. Food and Drug Administration puts prescription drugs for pregnant women into one of six categories according to the risk of harm to the baby. Category A drugs have not demonstrated any risk to the baby based on “adequate and well-controlled studies.” Category B contains drugs for which no risk has been found in studies in animals but for which there are no adequate and well-controlled studies in humans. Category C drugs have shown an adverse effect on the fetus in animal studies but there are no adequate and well-controlled studies in humans. According to the FDA, the potential benefits of Category C drugs “may warrant their use in pregnant women despite potential risks.”

  Category D contains drugs for which there is evidence of human fetal risk, “but potential benefits may warrant use of the drug in pregnant women despite potential risks.” Category X, the final category, is the FDA designation for drugs with evident risks of harm to the fetus that “clearly outweigh potential benefits.”

  Prednisone has not been formally assigned to an FDA risk category. However, a byproduct of Prednisone called Prednisolone has been given a Category C designation because of conflicting evidence of harm from some animal studies. I consider this a technicality. In my many years of ER medicine, I have never withheld Prednisone from pregnant women who needed it, and have never seen a colleague—including experts in asthma—do so either.

  What Iris hasn’t told me is that she knows that Prednisone is a Category C drug because she has looked it up online. Dr. Google has struck again!

  I am a big believer in patients using the Internet to get engaged in their own disease management. It makes me uncomfortable when patients ask a question to which they already know the answer because they looked it up. Iris has set up the doctor-patient relationship on a patently false test of her own making. It’s the test that demonstrated to me that Iris was not only pregnant and had asthma but she had health anxiety to boot.

  The other thing about health anxiety is that for doctors it often leads to decision paralysis. A pregnant woman comes to the ER with pains in her chest that get worse when she takes a deep breath. The pain could be due to a strained back muscle or a bruised rib. It’s probably one of those inexplicable pains that arrive and depart mysteriously.

  Unfortunately though, pregnant women also happen to be at increased of having a pulmonary embolus (PE) or blood clot on their lungs—a potentially fatal condition. In the absence of any other proven cause, I’m often forced to rule out a PE by ordering a CT scan of the woman’s chest. A CT scan is often the most accurate and safest way to rule out a clot. And that’s where the trouble begins.

  I can’t begin to calculate how many hours I’ve spent in the ER trying to reassure pregnant women that a CT scan of the chest is unlikely to cause cancer in their unborn child—to little or no avail. So they sit in their cubicle—afraid to go home lest they have a blood clot and afraid to have a CT. So powerful is their sense of helplessness born of anxiety that I’ve some patients ruminate on this decision for hours.

  When it comes to anxious patients, I must admit that I have a bit of a character weakness. I tend to get defensive when questioned closely by overly worried patients. I’d be very surprised if I’m the only one who finds hyper-anxious patients very challenging.

  To the calm patient, Dr. Google is a source of helpful information that promotes constructive engagement with health professionals. To those with health anxiety, it’s an enabler and a magnifier of fear and doubt.

  I’m
hardly the only health professional who feels that way. Hood Nurse says she and her colleagues often see the kind of patients they have nicknamed Dr. Google and Dr. WebMD. “Usually, we’re the second opinion,” says Hood Nurse. “But we’re not valued.”

  She recalls a woman coming into the ER “who had all the classic symptoms of a sexually transmitted disease. She had decided (based on Googling her symptoms) that she had cervical cancer.” Hood Nurse says she tried to reassure the woman that it was unlikely she had cancer. “In some cases, people are relieved when they hear that,” she says. “But in a lot of cases, they just think that we nurses are idiots because they know better, or their smartphone knows better.”

  She recalls hearing the father of a girl brought to the ER with a diabetic emergency argue with the doctor about the dose of insulin. She says he came armed with knowledge obtained from the Internet. “This is somebody who had absolutely zero medical training,” Hood Nurse recalls. “The stuff that the father was suggesting we do probably would have killed her.”

  Hood Nurse says that in her experience, patients with health anxiety are more likely to try out their Dr. Google skills on nurses than on doctors. That leaves it up to ER physicians to convince the patient that Dr. Google has the wrong diagnosis or the wrong treatment.

  “If the doctor is interested in convincing them, they can convince them,” she says. “People kind of dismiss a lot of the things that the younger nurses say, particularly if they’re female. The majority of our doctors are male. Sometimes if people hear it from a male, somehow that has more credibility. I don’t think they recognize that, but they somehow hear it with more authority and they’re okay.”

  * * *

  According to a Canadian Psychological Association fact sheet, some people are born predisposed to health anxiety. High family stress during childhood can lead to inordinate fears about health and illness. Some kids learn to be anxious by following their parents’ example. The illness and death of a close relative during childhood can make a person grow up to have a health anxiety.

  The problem of health anxiety is also being played out against skyrocketing levels of other anxiety disorders. Why North America is so anxious these days is a matter of considerable debate. Taylor Clark, author of the 2011 book Nerve: Poise Under Pressure, Serenity Under Stress, and the Brave New Science of Fear and Cool, says it’s not the precarious economic recovery following the 2008 recession or an uncertain job market. In a blog post in 2011, Clark cites three factors that make a lot of sense to me.

  The first is what Clark calls the Bowling Alone effect, named after Bowling Alone: The Collapse and Revival of American Community, by author and political scientist Robert D. Putnam. Clark says North Americans tend to move far away from family and lose a steady source of emotional support that helps alleviate anxiety: “Another factor that adds to this problem—especially among young people—is our growing reliance on texting and social media for community, which many psychologists say is no substitute for real human interaction.”

  The second factor Clark cites is information overload. Clark says the public is exposed to many more bits of news than ever before—more than some neuroscientists believe the human brain can absorb. And much of that information, says Clark, is alarmist in nature—especially health scares, which range from emerging infections to cancer risks attributed to cellphones and wi-fi networks.

  The third reason, Clark says, is an unhealthy habit of dealing with negative feelings such as nervousness and sadness by fighting to ward them off instead of just letting ourselves experience them.

  That last one tracks with what I see almost every shift I work in the ER. Instead of acknowledging that they fear being sick, I see patients who fight to ward off the fear by looking to the physician to magically take the fear of illness away. To the doctor, that usually means doing a diagnostic test that rules out a worst-case scenario. But indulging patients by searching for the worst-case diagnosis reinforces their conviction that they were right to worry in the first place.

  The unhealthy way of dealing with fear is to become helpless in the face of it. In medicine, we call it “failure to cope.” The slang term is dyscopia—a witty play on legitimate medical terminology. The prefix dys– means “bad, painful or disordered.” Dyspnea means difficulty breathing. Dysphagia means difficulty swallowing. And dyscopia is an invented term that means difficulty coping.

  Dr. Erin Sullivan, the former nurse and budding resident in family medicine, uses the term hypocopenemia—a nonsensical bit of slang that means low level of coping skills in the bloodstream—to mean the same thing. “You might look at their medical presentations as not that severe, but they are just not handling the fact that that they are in the hospital,” says Sullivan.

  Sullivan’s explanation reminded me that sometimes the term dyscopia is used to refer to patients who can’t cope with a battery of blood tests and other invasive procedures. Often, the term is reserved for a family member who has been the patient’s caregiver and is finding the job increasingly challenging.

  A triage nurse told me that one night a young woman brought in her mother, who had chronic heart failure. The woman announced to the nurse that she was leaving her mother at the hospital because she could no longer look after her. She said she could no longer perform daily nursing tasks like weighing her mother every day to make certain she wasn’t retaining water—a sign of worsening heart failure. The nurse also remembers how the daughter reacted when told her mother was not going to be admitted.

  “She just got so angry with me, as if I personally was making the decision,” the nurse recalls. “I just had to keep explaining to her that this is just not the way our system works.”

  The other reason for dyscopia is anxiety. If you think anxious ER patients drive us crazy, try the anxious parents of infants and young children. A couple of veteran pediatric ER physicians who didn’t want their names used (and who are mothers themselves) schooled me on that.

  “We talk about hypoparenting,” says the first physician, whom I’ll call Sally. “We talk about acopia or hypocopia when there’s a psychosocial element to the presentation of the child, when a parent could be doing a little bit better for their kid.”

  If dyscopia refers to bad or difficulty coping, the prefix a–, as in acopia, means the complete absence of coping skill. The term sounds technical enough that it can easily be said within earshot of parents without attracting their attention.

  How does Sally know that parents are inadequate after just meeting them?

  “That’s a very provocative question,” says Sally. “Sometimes we think it’s true if we see recurrent visits for a similar problem without plans having been made and no follow-through. From our perspective, when it’s two in the morning and you’re telling the parent the same thing for the tenth time, it’s hard sometimes to be sympathetic or empathetic.”

  Wendy, the other pediatric ER physician, paints this picture of a parent who suffers from acopia: “I go to see a child with a fever. I ask mom how long the fever has been going on and she says for less than an hour! The child hasn’t had any antipyretics [drugs that reduce fever] at home. Just like that, she has demonstrated to me the inability to do any problem-solving before coming to the ER.”

  What impact does that have on doctors like Wendy?

  “Well, after the twentieth fever in a row where they’re telling me the same spiel over and over again, I start to lose a bit of empathy.”

  But Wendy’s her greatest fear is an unspoken one: that after twenty children in a row with fever, she might lose the diagnostic edge that enables her to detect the one child with a life-threatening infection.

  “I guess we feel confident that 95 percent of fevers in small children who are immunized and look well are viral. We are confident in our history and physical examination. When the kid’s running around the department, he usually doesn’t have meningitis. Pediatrics is very gestalt
-driven. As soon as they walk in the door, you have a pretty good sense of whether the kid’s sick or not.”

  I certainly hope so!

  * * *

  As I’ve said, I have trouble dealing with anxious patients. So too does the culture of medicine, which mounts an almost immunological reaction to the anxiety with which patients leverage their illnesses. I’ve given a good deal of thought to what it is about anxious patients that people who practise medicine find so toxic. For one thing, anxiety is insatiable. After all, it is frequently based on a hypothetical worst-case scenario of illness that is often disproven only in retrospect. Doctors and nurses find it difficult to get in synch with anxious patients. We meet them in the here and now, while they exist in the worried future of scary diagnostic possibilities or the regretful past of prudent health choices not taken.

  But the most important reason physicians can’t stand anxious patients is what anxiety does to the medical mind. Anxious patients make health professionals feel anxious too. There is growing evidence that the brain activity of health-care providers can mirror that of their patients.

  In a 2013 study published in the journal Molecular Psychiatry, researchers at Harvard University did an intriguing experiment in which eighteen doctors were exposed to pain from a heat source while their brains were being monitored using functional magnetic resonance imaging (fMRI). When the physicians experienced relief from the pain, a portion of the brain known as the ventrolateral prefrontal cortex lit up.

  In the second part of the experiment, the doctors, again hooked up to fMRI machines, became observers while a researcher posing as a patient was exposed to the same heat-source pain that the physicians had experienced. The doctors were tricked into believing they were either relieving the patient’s pain or permitting the patient to suffer.

  The results were telling. When they believed that the patient was experiencing pain, there was no change to the physicians’ fMRI scans. But when they believed the patient was experiencing pain relief, the very same ventrolateral prefrontal cortex that had lit up when the physicians got pain relief lit up again when the physicians believed that the patient was getting pain relief.