The Secret Language of Doctors

by Brian Goldman

  When, even after these repeated statements, the call bell rings yet again, Not Nurse Ratched begins to lose her patience. She marches into Anna’s room to tell her one last time there is no way she is getting an IV. Anna listens calmly, sticks her fingers down her throat, and vomits on the nurse’s leg.

  * * *

  Anna is what ER doctors and nurses call a frequent flyer, someone who visits the hospital over and over again. A term known to health professional and laypeople alike, it’s borrowed from the loyalty programs offered by many airlines. Irony underlies its medical use. In the airline industry, the loyalty of the frequent flyer is wanted; in medicine, we would just as soon have our repeat customers take their loyalty to some other hospital.

  Frequent flyer is a polite way to refer to patients I call avid consumers of health services. Medical lexicon is replete with far more denigrating synonyms. Some of the doctors and nurses I interviewed for this book call them cockroaches.

  In a 1993 article titled “Medical Slang and Its Functions,” published in the journal Social Science & Medicine, Robert Coombs and his co-authors wrote that the slang name crock—as in “crock of shit”—is used for “a patient with no ascertainable, measurable physical problem—often a patient with a psychiatric disorder.”

  Coombs and his co-authors also uncovered the terms groupie, defined as a patient “who repeatedly comes to the Emergency Room without a real emergency,” and curly toe, which refers to “an old bum with toenails so long they curl over”—a common condition of homeless people, who are among the most common frequent flyers.

  The medical penchant for using acronyms shows up once again in conversations about frequent flyers. In the compilation by Coombs and his colleagues, CLL—which in real medicine stands for chronic lymphocytic leukemia—is short for “chronic low-life.” The acronym NPTG is the abbreviated version of “no place to go.”

  If you’re getting the impression frequent flyers aren’t exactly liked by health professionals, you’re right. There are many reasons for this. For one thing, a large percentage of frequent flyers in the U.S. are too poor to pay their bills.

  But lack of money or reimbursable health care are not the only reasons. Even those who are eligible to receive full health care coverage may fail to do the necessary paperwork to maintain their coverage. Or they have no fixed address and therefore fail the residency test necessary to obtain a health card or a driver’s licence. I call these sorts of patients anti-system people, because they’ve simply dropped off the map.

  Coombs et al. documented the use of nonpayoma and negative wallet biopsy when patients can’t pay their hospital bills and the financial hit has to be absorbed by the hospital. The nursing magazine Scrubs says the term negative wallet biopsy is invoked in the U.S. “when a patient is transferred to a cheaper, less intensive hospital after discovering he has no health insurance.”

  But money isn’t the only reason health professionals view frequent flyers with contempt. To many of them, frequent flyers look and act as if they have no interest in improving their health. Like Anna, they are often obese. They have uncontrolled high blood pressure, as well as uncontrolled diabetes and elevated cholesterol. Often, they’re heavy smokers. They seem to have little insight into the connection between their bad lifestyle habits and their health. They tend to be passive participants in their own wellness. They often offer very little useful information as to why they have come to the hospital. Though they visit the ER often, they seem to have little or no interest in taking steps to reduce the frequency of their visits.

  I can remember a frequent flyer I’ll call Donald, now deceased. When I used to see him, Donald was in his late sixties and would come in every five to seven days complaining of chest tightness. Donald had fibromyalgia, a muscular condition that can sometimes cause chest pain that mimics a heart attack. He used to take acetaminophen to relieve the pain. A short, heavyset man with white hair and broad cheekbones, Donald would walk into the ER clutching his chest.

  Of limited intelligence, Donald often gave one-word answers to my questions. If I asked what was wrong with him, he would answer “pain” and fire back the question, “Is it the fibro?” I would order an electrocardiogram and blood tests to rule out a heart attack, both of which would invariably be normal. When I visited Donald’s bedside later to give him the good news, he would invariably ask: “Can I go now?” as if—irrespective of the tests—he had decided it was simply time to leave. I must have gone through this ritual with Donald 100 times over a fifteen-year period. That doesn’t include the many times he saw my colleagues.

  A variant of the frequent flyer is the parent who repeatedly brings a child to the ER for what nurses and doctors believe are trivial reasons. Call that phenomenon “frequent flyer by proxy.” In Chapter 4, a pediatric ER physician talked about parents who bring their children to the ER for the same problem again and again without any evidence that they’ve followed through on the advice given on previous visits: “When there’s maybe a psychosocial element to the presentation of the child, a parent could probably be doing a better job raising their kid. That’s a nice way of saying it.”

  Psychosocial is another code word health professionals use frequently. They use it to indicate there’s nothing seriously wrong with the patient—at least not anything that the doctor has been trained to fix. When a patient—with or without a parent—bounces back like a boomerang, health professionals feel like they’re doing something wrong and they get frustrated.

  Physicians and nurses often put hours of effort into taking histories, doing physical examinations, ordering tests and providing intensive nursing care to frequent flyers—for no apparent long-term benefit. At other times, we feel as if we’ve gotten to know the frequent flyer so well that we stop doing any sort of a workup at all. Often, we busy ourselves fixing minor problems the patient has—fluids for dehydration, sandwiches for hunger and Valium to help the patient dry out from an alcohol binge—without getting at the root cause for the visit. Treat ’em and street ’em is the slang term for this type of care.

  Something is wrong with a system in which patients come back to the ER again and again and again with the same problem. On both sides of the border, the North American health-care system does little to encourage patients to seek care outside the ER or, in many cases, provides them with few alternatives.

  The number of visits per frequent flyer is jaw-dropping. Not Nurse Ratched’s patient Anna is approaching her five-hundredth ER visit over several years. In 2013, the Louisville Courier-Journal reported that Dennis Manners—who suffers from alcoholism and seizures—visited the ER at University Hospital in Louisville 337 times in less than two years, racking up $626,143 in charges he couldn’t pay.

  One doctor trying to do something about frequent flyers is Jeffrey Brenner, a primary-care physician in Camden, New Jersey. Brenner is the founder and executive director of the Camden Coalition of Healthcare Providers, a group that works with allied health professionals and hospitals to improve health care for Camden’s 78,000 residents.

  “In Camden, we found a patient who’d been to the ER 113 times in one year,” said Brenner. “We found a patient up in Trenton, New Jersey, who’d been 450 times in a year.”

  Compared with the entire population, these examples are extreme. The Centers for Disease Control reported that in 2011, the U.S. had 136.1 million visits to emergency departments out of a population of nearly 314 million—approaching just one visit for every two people per year.

  Frequent flyers are disproportionate ER users because the ER is the one place that can’t turn them away, thanks to federal laws. Kentucky, where Dennis Manners lives, has a very high rate of ER visits—549 for every 1,000 people, compared with the U.S. national average of 428 (as reported by the Centers for Disease Control). Across the U.S., the number per 1,000 people ranges from a relatively paltry 266 in Hawaii to a whopping 736 in the District of Columbia.

&nbs
p; If frequently flyers are in the wrong place, Jeffrey Brenner is trying to do something about it. He coined superutilizer as a less pejorative term for patients who flock to the ERs of Camden, where for ten years he’s been studying billing data from all three hospitals that serve the city. “They’re often in the ER because the health-care system doesn’t do a good job of taking care of them,” he says.

  And Brenner also discovered that superutilizers are not just an ER problem. He found that just 1 percent of patients in one part of Camden are responsible for 30 percent of all of the city’s health-care costs (of which ER costs are only a fraction), and 20 percent are responsible for 90 percent of the total. Brenner found that in some cases, extraordinarily high rates of health-care consumption can be traced not just to Camden districts but to city blocks, right down to individual apartment buildings.

  Brenner calls these places “medical hotspots.” And they aren’t confined to Camden. They can be found all over the United States and Canada. The west side of Saskatoon is another medical hotspot. Known by local experts as one of Saskatoon’s core neighbourhoods, the west side has the highest rate of new HIV infections in Canada, and higher-than-average rates of diabetes, depression, addiction, sexually transmitted diseases and hepatitis C. Its infant mortality rate is higher than in war-torn Bosnia. Like their counterparts in Camden, local residents visit the emergency room at St. Paul’s Hospital, which is the heart of the west side, as a means of getting basic health care—not just once or twice, but many more times, making them superutilizers in Brenner’s book.

  Stephen Lewis, a health policy analyst in Saskatoon, has been documenting the problems in the town’s core neighbourhoods for years. He says poverty leads to lack of things that well-off people take for granted—a safe place to live, nourishing food, immunizations, education and access to good primary medical care. Patients who lack these end up sicker, more injured and older before their time. In other words, they morph into superutilizers who frequent the ER at St. Paul’s Hospital.

  “St. Paul’s Hospital is essentially their primary-care centre,” says Lewis. “There are large numbers of people who get what they need by going that route.” He says the people who live in the area suffer high rates of injury and “there are also higher-than-usual rates of admission for pneumonia and conditions like that because of poor housing, poor lifestyles and so on.”

  Just a block away from St. Paul’s Hospital, I met up with Dr. Ryan Meili, a family doctor who knows these patients all too well. Meili works at Westside Community Clinic in Saskatoon’s core community of Riversdale.

  “The majority of our patients are First Nations or Métis,” says Meili. “We do have a number of refugee or immigrant patients as well. We’ve seen a great explosion in HIV and hepatitis C as a result of a big increase in substance abuse in the neighbourhood. The patients we see are really the folks who live here and are struggling with those issues.”

  Back in Camden, one of the most important discoveries to come from Brenner’s research is that not all frequent flyers are the uninsured poor. “My work isn’t poverty work,” he says. “I happen to be working in the poorest city in America, but my work is really about health-care redesign for patients who are very complex and sick.”

  And you don’t even have to be poor to be a frequent flyer, says Brenner. “Even in a wealthy community, as you get older, more frail and disabled, you collect into specific kinds of buildings. I think the challenge for the problem is that [superutilizers are] a very diverse group, a very heterogeneous group,” says Brenner. “If I said to you that all high utilizers are homeless, I’d be wrong. It’s only a subset of them. If I said to you that all drug addicts are high utilizers, I’d be wrong.

  “If you’re blind, if you’re deaf, if you’re disabled, if you’re in a wheelchair, if you don’t speak English, if you’re illiterate, if you’re developmentally delayed, if you’re depressed, if you’re overwhelmed, if you’re just older, if you’ve got complex co-morbidities (more than one of diabetes, chronic kidney disease, cancer, etc.), if you don’t have family support, if you’re poor—the whole system starts breaking down.”

  Brenner reminds me of a frequent flyer I’ll call Sarah. When I first met Sarah, she was a 21-year-old with chronic depression related to borderline personality disorder. She used to come to the ER after cutting her wrists or taking an overdose of Tylenol. To remove the Tylenol from Sarah’s intestines, we would have her swallow a nausea-inducing thick black sludge of activated charcoal mixed with sorbitol. If she was found to have toxic levels of Tylenol in her bloodstream, we would have to give her an antidote called n-acetylcysteine or Mucomyst.

  When Sarah came to the ER in an agitated state, I would give her an injection of haloperidol and Lorazepam to calm her down. If she was intoxicated, I would give her thiamine because up to 15 percent of intoxicated patients have low thiamine levels. If, after taking care of her non-psychiatric needs, Sarah said she still felt suicidal, I’d refer her to a psychiatric hospital. Almost invariably, the doctors there would decline to admit her because she didn’t meet well-established clinical criteria for admission.

  I must have gone through that ritual fifty or more times over a fifteen-year period. Though what I did sounds complicated, it’s really an elaborate version of treat ’em and street ’em—since nothing I ever did got at the root causes of why Sarah kept coming back to the ER.

  As Sarah got older, she developed severe high blood pressure. Her doctor put her on a complex regime of blood pressure pills. In time, she started coming to the ER with fainting episodes that were due to overdosing on the blood pressure medications. On several occasions, she had to be admitted to the intensive care unit. They’d patch her up and send her back to the street, only to see her return.

  It’s tempting to chalk up Sarah’s frequent-flyer status to her psychiatric history. But as she got older, her cumulative medical problems were no different from those of almost any elderly patient I see frequently in the ER.

  Frequent flyers become complex for myriad reasons. They might be elderly or cognitively impaired. They might have multiple medical problems or difficulty staying mobile. They might be homeless or have substance abuse. Often, they have mental health problems that make many ER doctors and nurses wish they’d take their business elsewhere.

  “Many of us will end up in that position later in our life in which our health fails,” says Brenner. “The system becomes incredibly confusing and difficult to use. So what I don’t want to do is stereotype them and say all superutilizers are one type of patient. If it were that easy, we would’ve fixed the problem a long time ago.”

  There’s no doubt that the North American model of doctor remuneration encourages frequent flyers. The U.S. has a mixture of private and publicly funded health care, while Canada has a single- payer publicly funded system. Despite the differences, physicians in both countries are paid based largely on volume. “Even in the emergency room,” says Brenner, “you make more money treating head colds than you do treating really sick people.”

  Despite big differences in their respective health-care systems, doctors in both the U.S. and Canada don’t get paid enough to spend time unpacking the complex problems of frequent flyers. In both countries, they are able make more money treating easier problems because they take far less time—which means they see far more patients per hour.

  It’s no accident that in Camden, the top four reasons people visit the ER are head colds, viral infections, sore throats and earaches; together, Brenner says, these four minor ailments account for 12,000 ER visits every year in the New Jersey city.

  * * *

  Although frequent flyer usually refers to a patient who comes to the ER, the term can also be used to talk about patients who frequent offices and clinics. Dr. Grumpy, the American neurologist blogger, says the frequent flyers he sees (he calls them cockroaches) tend to suffer from chronic pain. Chronic pain syndromes, such as pe
rsistent migraines and fibromyalgia, are both difficult to diagnose and difficult to treat. Patients suffering from these ailments often return to the doctor’s office despite the physician’s inability to help them.

  Paradoxically, the cockroaches Dr. Grumpy writes about are tidy and well mannered. “I think it’s their persistent nature that earned them the name cockroach,” Dr. Grumpy says. “You just can’t get rid of them. They just keep coming back.”

  One of these patients is a woman who started seeing Dr. Grumpy in her mid-thirties. She complained of chronic headaches and neck pain. Dr. Grumpy ran multiple tests and tried the patient on nearly twenty different medications. When none worked, Dr. Grumpy started to run out of ideas. “I had suggested multiple times she see a specialist at a university nearby, because I really had nothing else to offer her,” he says. “And yet she refused to go.”

  Now, about eight years after her first visit, the appointments follow a repetitive script. Dr. Grumpy begins by asking, “How are you?” The patient responds by describing the same list of symptoms she describes every visit. Dr. Grumpy reviews her medications and re-examines the tests. Then, as he does every appointment, he suggests she see a neurologist and notes she need not come back since there’s nothing else he can do to help her. “Then the patient walks right out front and makes a follow-up appointment with my secretary,” Dr. Grumpy says.

  “There’s just never any resolution. It just goes on and on until either they give up or you retire or they die, or the doctor dies.”

  Dr. Grumpy wonders if coming to his office fills some sort of need for the frequent flyers he sees. “I can only assume there’s some sort of psychological dependency. Maybe coming to the doctor is her whole life.” He notes that cockroaches tend to schedule their appointments “three years in advance and be there ten minutes early.”

  ER nurse Not Nurse Ratched believes that although her frequent flyer patient Anna complains of chest or abdominal pain, the real reason for her visits to the ER is anxiety. “For some reason, she gets some kind of need met from being at the emergency department.” Once, the ER nurse overheard a doctor talking to Anna about the underlying reason for her visits. “I think that your issue is psychological,” the doctor said, “and I think that by feeding into it I’m only making you sicker.”