Chaos and Organization in Health Care
By Thomas H. Lee James J. Mongan
The MIT Press
Copyright © 2009 Massachusetts Institute of Technology
All right reserved.
ISBN: 978-0-262-01353-6
Chapter One
Chaos
Her friends and doctors still describe her as "formidable," and at age eighty, SC finds that amusing. When she was younger and still teaching William Shakespeare to college students, she knew she was a force-a passionate, sometimes intimidating teacher who knew how to make her points. She used those same skills after she retired as a community activist-the sort of well-informed, overwhelmingly articulate citizen who just by walking into a public hearing, can cause local politicians' hearts to sink.
Today, she remains imposing. SC leans toward her listeners as she speaks, and they tend to lean ever so slightly backward. But the word she uses to describe herself is "vulnerable." She has a long list of medical problems, a cane, and many vials filled with pills. In the last few years, she has been diagnosed with three different cancers-chronic lymphocytic lymphoma, then skin cancer, and then lung cancer-and she suffers real aggravation every day from a long list of other conditions, including asthma, arthritis, heartburn, gout, high blood pressure, and hay fever.
As bad as those problems might be, SC is most troubled by the strange and scary spell in 2004 when she lost her memory. For several hours, she could walk, talk, and think-but she could not record new memories. People told her things, and the thought was instantly gone. She asked her partner the same questions over and over. And then, as mysteriously as it began, the spell was over.
At the time she thought she was having a stroke. Instead, after an extensive evaluation, she was told that she had transient global amnesia-more a description than a diagnosis, really, since transient global amnesia thus far has eluded scientific explanation. She has not had any recurrences, but she remains unnerved by the episode.
Over the years, SC has become accustomed to bad news about her lungs, joints, stomach, and blood cells, yet the idea that her brain might be vulnerable scares her. She has, after all, always felt that her mind is what defines her. Every day, she reads the New York Times and scours legal notices in the local paper for items relevant to her favored causes. But now she also uses the Internet to research her medications and diseases. When she finds something intriguing, she passes the information on to her doctors.
The work of communicating with those doctors-and trying to get them to communicate with each other-sometimes seems a full-time job. SC has a primary care physician and an allergist in the Rhode Island city where she lives. For most of her care, however, she drives fifty miles to Boston, where she sees an internist, an oncologist, a lung specialist, and an orthopedist. In 2006, she was admitted to the hospital for a total knee replacement, and in 2007, she had two procedures to diagnose and remove her lung cancer, and a third for a bladder problem. She had a total of eighteen Boston office visits with twelve different doctors (including one of the authors of this book) in 2007 alone. During that year, she underwent CT scans of her abdomen, chest, and pelvis-twice for each test. She also had her mammogram and a flu shot.
SC takes a lot of medications. Her eighteen active prescriptions overflowed her medicine cabinet long ago and now also fill the drawer in the nightstand by her bed. She gets chemotherapy for her lymphoma, and takes six medications for her asthma and an annoying cough. She uses other drugs for her arthritis, heartburn, gout, high blood pressure, and hay fever.
With all these doctors ordering all these drugs and tests, the risk for confusion seems overwhelming. So far, such problems have been relatively rare, in part because she is such an active and intelligent participant in her own care. When a physician's words or prescriptions do not make sense to her, SC does not hesitate to speak up. Inevitably, though, chaos sometimes creeps in.
Her Boston physicians might repeat a test already done in Rhode Island, because it is easier to duplicate the test than track the results down. The findings on a CT scan done in Boston by one physician are not communicated to the other doctors in either state. A medication prescribed by one doctor has a potentially dangerous interaction with a drug prescribed by another. A simple question-"Why am I coughing?"-can go unanswered for months. Each specialist tells her that the cough is not due to a problem in his or her area; no one addresses her issue.
In many ways, her medical story captures what is so right about U.S. medicine today-and what is so wrong. Without all those doctors, tests, and prescriptions, her problems would surely be worse. She would probably not be alive at age eighty, let alone reading the New York Times and making local politicians squirm.
SC is benefiting tremendously from modern medicine, but that benefit comes with a struggle that is at times harrowing. She feels like her medical care is a train that could go off the tracks at any time if she relaxes her guard. She knows that her care is less efficient, less reliable, and more hazardous than it should be. But like most patients, SC does not know what she or anyone else can do to assure that nothing slips through the cracks.
Failing Grades
The chaos that threatens the care of this patient and so many others may not be apparent from the statistics that describe the U.S. health care system. But the cumulative impact of the problems experienced by individuals like her is a health care system that is the most expensive in the world, yet so far from what one would expect in safety and reliability.
Concern that the U.S. health care system has fundamental problems has been building for decades, but the need for fundamental change is a relatively recent insight. The Institute of Medicine sounded the alarm in 2000 with the release of To Err Is Human. This first report in a highly influential series focused on problems in patient safety, and described an epidemic of medical errors causing an estimated forty-four thousand to ninety-eight thousand deaths in the United States per year. The enduring image from that report was of a 747 airplane full of patients dying every day because of preventable medical injuries. The second report, released the next year, was titled Crossing the Quality Chasm. This report described problems not just in patient safety but also in efficiency, timeliness, and the reliability with which care that is known to be helpful to patients is actually delivered.
In the years since, the gap between the health care we expect and what we actually receive has been characterized in painful detail. The research study that best captured the magnitude of the problem was published in the New England Journal of Medicine in 2003 by a research team led by Elizabeth McGlynn, from the California think tank known as RAND. This study has been so influential that it is routinely quoted by candidates for political office in their critiques of the U.S. health care system.
McGlynn's team interviewed 13,275 randomly selected adults in twelve U.S. metropolitan areas. For about half of these people, the researchers obtained their actual medical records. Using these data, they were able to calculate how often people with thirty different medical conditions received tests and treatments that were likely to be beneficial. The study's "bottom line" became famous: the patients received only 54.9 percent of the interventions recommended for their conditions (e.g., eye exams for patients with diabetes).
Even when "the right thing" usually occurred, the gap between 100 percent reliability and the actual rate was surprising. Just 66 percent of recommended immunizations and 69 percent of recommended drugs were given, and patients with breast cancer received only 76 percent of recommended care interventions. For many everyday medical issues, the chances that the right thing happened seemed a coin flip-or worse. The weakest area was counseling or educating patients, which medical records suggested occurred only 18 percent of the times when it would be expected. Only 10.5 percent of the interventions for patients for alcohol dependence were documented as delivered.
One would expect that many medical interventions should be about as routine as airplane pilots putting down landing gear as they approach the ground, but here are the frequencies with which they actually occurred in the McGlynn study:
* Follow-up of the finding of a breast mass with further testing or a doctor visit within three months: 89 percent
* Performance of mammography annually in women with a history of breast cancer: 85 percent
* Use of aspirin within one week for patients with newly diagnosed coronary artery disease: 51 percent
* Use of insulin therapy in diabetic patients who have not achieved good control of their blood sugar levels with oral medications: 39 percent
At first, many people thought that the 55 percent finding had to be wrong, or that it must reflect poor care for socioeconomically disadvantaged Americans. But the results have been meticulously reviewed, and if anything, they understate the real gaps in quality. The good news-bad news story turns out to be that poor or nonwhite people have not cornered the market on mediocre health care. Whites were actually slightly less likely to receive recommended interventions than blacks or Hispanics. People with college or graduate school degrees received 56 percent of the interventions-about the same as the 55 percent rate for those who did not complete high school. Annual income, type of health insurance, age, and gender didn't matter much either.
According to this study, a fifty-year-old white female college graduate with private health insurance and a household income above $50,000 would receive 57 percent of the recommended care. On the other hand, a fifty-year-old uninsured black man with less than a high school education and an income under $15,000 would receive 51 percent of the recommended care. The difference in quality experienced by these two types of patients was trivial compared to the gap between ideal care and reality. These two people might never cross paths in U.S. society, but they were likely to receive the same mediocre health care.
A more global look at the "opportunities for improvement" for the U.S. health care system was provided in 2006 by the Commonwealth Fund Commission on a High Performance Health System and updated in 2008. Instead of comparing U.S. performance for various medical interventions to a theoretical ideal rate of 100 percent, this commission used real-world benchmarks-the rates achieved by other countries, or the top 10 percent of U.S. states, hospitals, health plans, or other groups of health care providers. Thus, the U.S. health care system was evaluated using real-world goals that fell well short of perfection. Think of this approach as grading the U.S. health care system on a curve.
Using this approach, the performance of the U.S. health care system averaged only 66 percent of the benchmark rates in 2006, and it had not improved at all in the 2008 update. The United States in fact fell from fifteenth to last place out of nineteen countries on a measure of mortality amenable to medical care, because other countries had improved while the U.S. performance stayed about the same. Compared with other countries, U.S. patients were less likely to have their medications reviewed at discharge or to report good access to care when they needed it. U.S. patients were also more likely to report medical, medication, or lab test errors.
The "underuse" of beneficial care may be particularly galling to physicians, because it reveals a lack of reliability that belies their public image. But there are two other major types of errors that are of comparable social concern. "Overuse" occurs when an intervention's benefits do not justify its potential harm or costs-for example, the performance of a high-cost radiology test that is unlikely to change a patient's treatment, or a prescription of antibiotics for a patient who probably has a viral respiratory infection. Although physicians may not set out to give treatments of little value to their patients, after-the-fact reviews of cases suggest that as many as one-third of some medical interventions may be clinically inappropriate. The third type of error is "misuse," which occurs when a preventable complication eliminates the benefit of an intervention. An example is an allergic reaction to penicillin in a patient with a known allergy to this class of antibiotic.
Concern about overuse is driven by rising health care costs, while worries about misuse rise with each press report of patients who receive the wrong drug, have surgery on the wrong site, or have treatment complications that might have been foreseen and prevented. For patients, the impression that U.S. health care is dangerous is reinforced by their actual experiences. In one survey, more than a third of physicians and laypersons reported that there had been errors in their own care or a family member's care.
Critics of U.S. health care tend to focus on one issue at a time-for instance, our high costs, lack of safety, or lack of reliability. Perhaps because these challenges seem so formidable, health care leaders tend to specialize in one or at most two of these areas, as if they were separate battles to be fought. Responsibility for patient safety, cost reduction, and clinical quality improvement in hospitals may be assigned to three different people.
The wisdom and effectiveness of this division of labor are uncertain. A credible case can be made that these problems share the same root problem: medicine has become too complex for the way we deliver health care.
The Overwhelmed Physician
Although medicine has advanced rapidly in recent decades, the daily lives of many physicians have changed surprisingly little. They rise early, often before the sun is up, and go first to the hospital, where they see their patients who are hospitalized. They write (by hand usually) orders for the tests to be performed and treatments to be delivered that day. By 8:00 or 9:00 a.m. they are at their offices, where they are the only physician or perhaps one of two to three doctors. They work hard throughout the day, seeing patients every fifteen minutes or so. They write prescriptions for medications on paper prescription pads. In between patients, they make or take calls from patients, pharmacies, and colleagues. Then at night they carry home a stack of paperwork to be completed by the next day, when the cycle begins anew.
The pace of the physician's day has always been relentless, frequently hectic, but doctors have been sustained through the ages by something beyond monetary reward. They are respected throughout their communities-even romanticized for their selfless dedication to their patients. The cultural role of physicians is that of the heroic healer, sacrificing their own lives after a fashion to help patients extend theirs. Rising from bed in the middle of the night is just one more way in which physicians convey their commitment to patients. Indeed, appearing gaunt and exhausted has never been a professional liability for physicians.
Dedication is an expectation with which most physicians remain comfortable; more problematic is the related assumption that they are also all knowing. The rigors of medical training are hardly exaggerated in films and books. Of the 148 hours in a week, medical students and young physician trainees might spend 40 of them asleep, and devote virtually all the rest of those hours to learning their craft. At the end of their training, they assume a status in which their orders and advice are rarely questioned.
The special role of physicians as all-knowing healers is sustained partly because many patients harbor hopes that their doctors have near-magical powers. For example, one study found that about one-third of patients want to be on an equal footing with their physicians-such as calling each other by their first names. But a comparable percentage want to call their physicians by their title and last name (e.g., Dr. Smith), just as they also want their physicians to wear white coats. As one psychiatrist-colleague puts it, "When people are sick, they don't want to put their fate in the hands of someone who could be sitting on the bar stool next to them later that evening. They don't want a friend-they want a healer who will cure them. They want someone with superhuman powers, so they don't really want to relate to physicians as equals."
This special status for physicians is established in subtle ways. Office staffs in many physician practices do not address physicians by their first names in front of patients. First-year medical students at over a hundred U.S. medical schools have "White Coat Ceremonies," in which they don the traditional physician garb with the solemnity of judges putting on robes. Some physicians (including one of the authors) were trained never to open a book to look up information in front of a patient, but to instead leave the room to find the needed facts. The unspoken message to patients is, "I have everything up here in my head."
This myth has proven unsustainable, however, and if there ever was a time when physicians really could keep everything they needed to know inside their heads, that era ended long ago. Since World War II, U.S. federal and corporate funding for research has grown rapidly, leading to not just new drugs and technologies but also an explosion in medical knowledge. According to the U.S. National Library of Medicine, there were 670,943 new articles that were indexed in 2007 in its database called MEDLINE-about twice as many as the 336,000 new articles published back in the Dark Ages of 1996 [10]. (The number of articles retracted because of errors or scientific fraud increased from 16 to 124 over that same period.)
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Excerpted from Chaos and Organization in Health Care by Thomas H. Lee James J. Mongan Copyright © 2009 by Massachusetts Institute of Technology. Excerpted by permission.
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