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Health Care Special Issue: Big Trouble

On a Wednesday afternoon in June, a man I'll call David asked his sister to drive him to the emergency room at Boston's Brigham and Women's Hospital. Earlier in the week, he had visited another Boston emergency room after spraining his ankle. But, when the doctors there x-rayed the ankle and found no fracture, they sent him home. Now, a few days later, David's ankle was still hurting him--so much that he could barely get out of bed. Even more worrisome, when David did manage to walk around, he quickly became short of breath. That seemed strange for someone who was only 27 years old, so he wanted to get himself checked out.

Not long after he arrived at the Brigham and Women's ER, a nurse took David's vital signs. His temperature, pulse, and blood pressure were all normal. But his oxygen saturation level was low. That, combined with the recent ankle injury that had left him virtually bedridden, led the ER doctors to surmise that his shortness of breath was probably the result of a blood clot in his leg that had traveled to his lung--a pulmonary embolism. Normally, tests to confirm this diagnosis are fairly straightforward. But, with David, there was something that would make the tests--and his entire course of treatment, for that matter-- extremely complicated: He weighed more than 550 pounds.

When the doctors sent David for a chest x-ray (to look at his lungs) and a leg ultrasound (to look for clots), the tremendous amount of fat and tissue in those areas made the images practically impossible for the doctors to interpret- -"like watching TV without cable or an antenna," as one radiologist put it. A helical CT scan of the vasculature in his lungs proved similarly difficult for them to read. David's high total blood volume-- a function of his obesity-- caused the contrast dye the CT technician had injected into him to become so diluted as to be almost invisible.

Nonetheless, the ER doctors still believed that the most likely diagnosis for David was a pulmonary embolism, and they decided to admit him to the hospital. (Full disclosure: My wife is a physician at Brigham and Women's, but she was not involved in David's care.) While David waited for an inpatient bed to open up, the ER nurses managed to insert an intravenous line in his wrist-- no easy feat given the amount of fat between his skin and blood vessels--and the doctors gave him an anti-blood-clotting drug so that he might get a head start on getting better.

But, by the next afternoon, David's condition had taken a turn for the worse. Although his blood oxygen was better, his carbon dioxide level was dangerously high--and he had gone into respiratory failure. Finding him unconscious and unresponsive, a team of doctors and nurses worked quickly to insert an endotracheal tube in his windpipe, which they then attached to a ventilator to help him breathe. Intubated and unconscious, David was rushed to the hospital's intensive care unit, where a new team of doctors began to puzzle over his condition--and over how, if possible, they could make him better.

It is a long- and well-understood fact that obese people are more likely than non-obese people to suffer from any number of medical problems--from Type 2 diabetes to high blood pressure to heart attacks to colon cancer. But it is only recently that the medical world has begun to recognize that obese people are at greater risk for health problems that have no physiological connection to their weight. Medical researchers, for instance, have found that obese women are less likely to receive routine preventive care services, including pap smears, pelvic exams, and breast exams. And, while trauma is the fifth-leading cause of death in the United States, the mortality rate for severely obese individuals who have suffered a trauma is eight times greater than that of normal-weight people. Being fat, it seems, has never been more hazardous to a person's health.

What's more, an ever-growing number of Americans are facing that hazard. According to the most recent National Institutes of Health data, 32 percent of adults in the United States are obese--meaning they have a body mass index (BMI) greater than 30--as compared to 23 percent a mere decade ago. And much of that growth has occurred at the higher end of the scale. While the rate of obesity among Americans has gone up two-and-a-half times over the past 20 years, there has been a five-and-a-half-fold increase in the prevalence of Americans who have a BMI over 50. In 1986, it was estimated there were 175,000 Americans with a BMI over 50; today, medical experts estimate there are 1.6 million.

It's an increase that health professionals, not surprisingly, are noticing at their jobs. "When I started training in 1994, we would definitely see morbidly obese patients, but they were relatively uncommon," says David Feinbloom, a doctor who specializes in inpatient care at Boston's Beth Israel Deaconess Hospital. "Today, on my service, I encounter at least one morbidly obese person every month. It used to be one a year."

Which means that the medical world is just now beginning to grapple with the issues of how to treat people with obesity--and not just in terms of helping them lose weight. From creating equipment for larger patients to examining their own prejudices against fat people, medical professionals are starting to realize they must interrupt the vicious cycle in which the very thing necessitating that these patients receive quality health care--their obesity--all too often prevents them from getting it.

In October 2001, Marlene Schwartz traveled to Quebec City to attend the annual meeting of the North American Association for the Study of Obesity (naaso). She was armed with a questionnaire. A Yale University psychologist, Schwartz studies weight bias; one of her favorite tools for measuring that bias is something called the Implicit Associations Test (IAT).

To simplify slightly, the IAT is designed to measure unconscious prejudice by timing people as they're asked to classify certain words. The IAT for weight bias, for instance, asks subjects to assign positive words (such as "motivated" and "smart") and negative words (such as "lazy" and "stupid") to the categories "thin people" and "fat people." If the test taker is quicker to match a positive word with "thin people" than with "fat people"--or, conversely, if the test taker is quicker to match a negative word with "fat people" than with "thin people"--he's demonstrating an implicit weight bias.

When Schwartz had given the IAT to students at Yale, she had discovered that, as a group, they exhibited significant weight bias. Now, as she handed out questionnaires to about 400 people in a Quebec City hotel ballroom, she wanted to know if the health professionals who specialized in obesity harbored similar anti-fat prejudices. The first indication that they did came before they'd even completed the IAT. "As people were taking the test," Schwartz recalls, "you could hear them making audible noises when they realized their own attitudes." And, as the test results eventually showed, those attitudes weren't kind toward fat people: As a group, those surveyed at naaso's conference considered fat people lazier, more stupid, and more worthless than their thinner counterparts.

But, while Schwartz's findings were depressing, at least they were less troubling than similar studies of health professionals who don't specialize in obesity. A 2003 survey of 620 primary care physicians, for instance, found that at least 50 percent of them believed obese patients were awkward, ugly, and noncompliant. A 1989 sample of over 100 nurses, meanwhile, found that one in four of them were "repulsed" by caring for obese patients. Although you'd think that medical professionals would be more in tune with the growing scientific consensus that obesity is a disease and not a failure of willpower, they obviously aren't.

And yet, in some ways, health professionals' negative attitudes toward the obese--while inexcusable--are understandable. One explanation is simple class bias. "When you think about the socio-demographic and economic backgrounds of many physicians, they often do not belong to groups that have the highest BMIs, " says Christina Wee, an internist at Beth Israel Deaconess who researches obesity and health disparity issues. "So, in general, we physicians often have a different perspective-- the people whom we know are often not obese, or at least not as obese as the patients we see in clinical practice."

Another explanation is that the medical profession often leans more toward the profane than the sacred, as doctors and nurses seek to leaven a stressful work environment with black humor--which frequently comes at the expense of those they're caring for. That some of that black humor would be internalized and converted into actual negative attitudes is, perhaps, inevitable.

Finally, health professionals are only human, in that they tend to get frustrated with people who cause them discomfort or harm--which, unfortunately, can often be the case with obese patients. According to a 2000 report from the Bureau of Labor Statistics, health care workers sustain 4.5 times more overexertion injuries than any other type of worker. And a 2004 industry survey found that 28 percent of respondents reported an increase in health care workforce injuries related to caring for obese patients.

Whatever its source, this medical bias against fat people doesn't go unnoticed by obese patients themselves--and it can have extremely deleterious effects. One recent survey of large women found that more than 60 percent of those who were severely obese had delayed or avoided getting a gynecological exam due to the "negative attitudes" of their medical providers. As Lynn McAfee, a 400-plus-pound Philadelphia-area woman who serves as the director of medical advocacy for the Council on Size and Weight Discrimination, elaborates: "You're laying there with your feet in stirrups, holding your own fat thighs apart and being lectured by somebody to lose weight. Or you're told, as I was by my gynecologist, 'So you're not sexually active.' And I said, 'Yeah, I am.' And she said later on, 'If you were sexually active,' and I interrupted her and said, 'I am sexually active!' And then it happened a third time. ... Gynecologists are generally not our friends."

The medical world is just now starting to come to terms with and combat its own negative attitudes toward the obese--with some sensitivity-training programs going so far as to have doctors and nurses wear fat suits. But eliminating prejudice is an awfully tall order. In the meantime, some medical professionals are just trying to work around it. At Massachusetts General Hospital's obesity treatment center, there is no formal sensitivity training for staff; but there's an expectation that patients will be treated with respect. And there are certain words or terms--such as "morbidly obese"--that are verboten; "severe obesity" is the preferred term. "When you call somebody morbidly obese, you're really saying they're disgustingly disgusting, and that's not something we want to be doing," explains Lee Kaplan, the center's director. Even the MGH obesity treatment center's formal name--The Weight Center--is a nod toward destigmatization. The patients there seem to appreciate it. "One of the things we get commended most commonly about by patients is that we're actually nice to them," says Kaplan. "That should be the baseline."

According to his family, David, like many people with obesity, had long been reluctant to seek medical treatment for the simple reason that he was embarrassed by his size. So it was fortuitous, to say the least, that he had overcome that embarrassment and gone to the hospital on that June afternoon shortly before he stopped breathing. Had he been at home at the time, there's a good chance he wouldn't have survived the episode. But now, as he lay intubated and unconscious in the ICU, his survival was still very much in doubt.

The ICU doctors continued to treat David for a pulmonary embolism, but they also began to investigate other possible explanations for his condition--and they tried to answer the fundamental and pressing question: Why had he stopped breathing? It wasn't long before Rebecca Baron, the pulmonary critical care specialist who was now treating David, discovered an important clue. An extraordinary amount of fluid had accumulated in his lower extremities. "When I pushed my finger into his leg, there was an indentation that persisted and didn't go away," Baron recalls. "In most people, this is obvious. But, because he was so large, it wasn't readily apparent that all this extra body mass was fluid. I think everyone assumed, not unreasonably, that it was all soft tissue related to his obesity."

Baron immediately started David on a diuretic drug in order to get some of the fluid out of his body. (During his first nine days on the diuretic, he would be relieved of nearly 50 pounds of fluid.) Now the ICU team's attention turned to the question of what had caused David to retain all that fluid. Baron had a hunch. She ordered an echocardiogram-- an ultrasound of the heart--for David, and she discovered what she suspected. The right side of David's heart-- the part responsible for pumping blood to the lungs, where it picks up oxygen-- was under extremely high pressure. One common explanation for that pressure is a huge pulmonary embolism. But a pulmonary embolism big enough to cause that kind of pressure would have almost certainly shown up on the earlier CT scan-- even one as difficult to read as David's. Another cause for the pressure, however, made much more intuitive sense in David's case: chronic obstructive sleep apnea, which is a common problem for obese people. Over the years, sleep apnea caused him to suffer pulmonary hypertension--which, in turn, led to right heart failure. At last, David's doctors had arrived at a firm diagnosis.

This difficulty diagnosing the obese is hardly unique to David. In 2003, Raul Uppot, a radiology fellow at Massachusetts General Hospital, noticed something unusual: An increasing number of diagnostic images at the hospital were being deemed unreadable due to the patient's "body habitus"--or build. Going through the past 15 years of MGH records, Uppot found that the number of images deemed unreadable due to body habitus had doubled. He then looked at census data to see if that trend correlated in any way with the prevalence of obesity in Massachusetts. Sure enough, it did. He presented his findings at the subsequent national conference of radiologists. It was the first time, Uppot boasts, that someone had conclusively proven that "obesity was having an effect on the ability to acquire diagnostic images."

Since then, Uppot has become something of an expert on the impact of obesity on radiology. The problems, he notes, aren't just limited to poor images. Oftentimes, patients are too obese to even attempt an image--since they either exceed the weight limit on the table or they're too wide to fit into the machine. Once, doctors could get around this problem by taking the admittedly embarrassing step of sending extremely obese patients to veterinary facilities, where table limits on imaging machines went as high as 1,100 pounds. But even animal hospitals have begun buying radiological equipment with lower weight limits. Although some doctors now opt to send obese patients who can't fit in the standard MRI to what is called an Open MRI--which, as the name implies, is open so that it can fit anyone--they concede the images produced are of significantly lower quality. The result is that, in practical terms, the march of science is leaving obese patients behind. "When people have severe obesity and they get sick," says the Weight Center's Kaplan, "we're often forced to give them mid-twentiethcentury medical care as opposed to twenty-first-century medical care."

Fortunately, the magic of capitalism is beginning to provide some relief. In recent years, diagnostic imaging equipment manufacturers have been racing to build machines that can accommodate bigger patients. In 2005, Siemens introduced an MRI machine called the Magnetom Espree, which has a 550-pound weight limit and a 70-centimeter opening. Since it was introduced, Siemens has delivered about 500 Magnetom Esprees--making it the company's best-selling MRI scanner in its class. Anne Sheehan, a Siemens marketing manager, can hardly conceal her glee about the Magnetom Espree when she says, "The U.S. market has totally embraced it because of our unfortunate situation with the obesity epidemic."

Indeed, the market for plus-sized medical equipment is booming--to the tune, according to some estimates, of as much as $3 billion per year. Companies with names like Big Boyz and Amplestuff now sell everything from extra-extra-large patient gowns and blood-pressure cuffs to 1,000-pound-weight-bearing hospital beds with built-in scales and double- wide wheelchairs. Even medical settings as prosaic as doctors' waiting rooms and hospital bathrooms are getting the super-size treatment: A 2002 article in the journal American Family Physician counseled doctors to equip their reception areas with "sturdy, armless chairs and high, firm sofas"; and many hospitals have begun replacing wall-mounted commodes with ones that sit on the floor.

Unfortunately, while there's lots of money for medical equipment geared toward the obese, there's not as much for medical research. Although the Department of Health and Human Services recently put out a major solicitation for research on improving health care for obese patients, the research dollars spent on obesity are still fairly paltry. Where the NIH budget contains more than $2,900 per patient per year spent on aids research and about $450 per patient per year for research on Parkinson's disease, research on obesity comprises only $6.56 per patient per year.  

And the lack of research dollars has led to a lack of basic knowledge on everything from the proper drug dosing for obese patients (since some drugs are absorbed in fat and some aren't) to how to perform a proper physical exam on someone who's obese. Kaplan, who recently created an obesity medicine subspeciality at MGH in the hopes of luring doctors--and research money--to fill some of these knowledge gaps, points to one very elemental medical conundrum posed by some obese patients: the rectal exam. "For many patients, the rectal exam is useless, because our fingers aren't long enough," he says. "But there's no literature on the predictors of not being able to do a good rectal exam. It sounds almost like a late-night joke, but a lot of medicine is like a late-night joke. The problem is there's no information on this--and there needs to be."

As the doctors and nurses in the ICU worked to treat David for his right heart failure, they encountered difficulties with even the most routine aspects of his care. It was impossible for doctors to listen to his heart or lungs with their stethoscopes because there was so much soft tissue between their instruments and his organs. Their efforts to drain his body of fluid were occasionally interrupted when his pannus--the apron of fat and tissue hanging from his midsection--would fall onto his catheter and block it. Just turning David to clean him and treat a serious ulcer that had developed on his buttocks required five nurses and two doctors.

But the biggest impediment to David's recovery was his utter dependence on the ventilator. "We wanted to get his endotracheal tube out because you get inflammation, it's a good pathway for infection, it erodes soft tissue in the throat, and it means the patient has to remain on high doses of sedatives," says Lynn Matthews, another doctor who cared for David in the ICU. "Basically, people can't get better when they're intubated." But, every time the doctors tried to wean David from the ventilator by reducing the amount it assisted his breathing, his oxygen level would drop and he would go into respiratory distress. "Because of the excess fluid and his body mass, we had to use higher pressures on the ventilator to keep his lungs open and help his chest wall move so that he'd be able to breathe," Baron explains.

In an average-sized patient, a situation like this has a relatively straightforward solution: Keep the patient hooked up to a ventilator but remove the endotracheal tube from his mouth and insert a tube through an incision in the trachea. But surgeons were reluctant to perform a tracheotomy on David, deeming it too risky because of his labored breathing. The surgeons told the ICU doctors that, if they could get the ventilator pressure to a certain point, they'd do the operation. So the ICU team continued to give David diuretics, and he continued to lose fluid. After several weeks, he had been drained of more than 150 pounds. But the pressure on his ventilator was still higher than the surgeons wanted it to be. Uncertain that the pressure would ever go lower, the ICU doctors prevailed upon the surgeons to do the operation anyway. In the middle of July, David was given a tracheotomy. Ten days later--and some 41 days after he first came to the Brigham and Women's emergency room--David was discharged from the hospital and sent to a rehabilitation facility.

Baron could only look back on David's case with wonder at how something so complex had actually been, in one way at least, so simple. "From the development of his underlying illness to his presentation to his care to his recovery, it all stems from the same problem," she says. "It's pretty amazing that it's all kind of linked together." As is the case for so many like him, David's obesity functioned as a medical conspiracy of sorts: First it made him sick; then it made it exceedingly difficult for him to be treated for that sickness.

As of this writing, David, who asked that his real name not be used in this article, is still at a rehab facility just outside of Boston. Although his tracheotomy tube has been removed and he is now breathing on his own, he is still a long way from being healthy. The ulcer on his buttocks that he developed during his long hospital stay has not fully healed. And, due to the fact that his leg muscles grew so weak while he was confined to a bed for 41 days, he is still in a wheelchair. More fundamentally, there's his obesity. His weight is now 370 pounds--nearly 200 pounds less than he weighed when he went to the ER back in June--but David is aiming to get it lower. His doctors have told him that he if he gets down to 350, they will evaluate him for weight- reduction surgery. "I can't go back to the same way I was," he says. "I want to lose more."

In the meantime, David is going to two hours of physical therapy each day, working on his leg and arm muscles. He's optimistic that he'll leave his wheelchair soon and then will be able to tackle his bigger medical challenges, but he's trying to be realistic, too. "I've got to crawl before I can walk," he says.