Better (23 page)

After an ordinary hernia operation, for example, the chances a patient will have a recurrent hernia are one in ten with surgeons at the unhappy end of the spectrum, one in twenty with those in the middle majority, and under one in five hundred with an elite handful. For newborns admitted to a neonatal intensive care unit, the risk-adjusted death rate averages 10 percent but varies from 6 to 16 percent, depending on the center. For women undergoing in vitro fertilization, the likelihood of successful pregnancy from a given attempt at implanting a fertilized embryo is around 40 percent for most centers but ranges from under 15 percent to over 65 percent depending on where they go. Differences in the age of patients a center sees, its willingness to accept high-risk patients, and other factors certainly account for some of this variability. Nonetheless, for a given patient, there are wide, meaningful differences among centers and a few are simply better than the rest.

The bell curve is distressing for doctors to have to acknowledge. It belies the promise that we make to patients: that they can count on the medical system to give them their very best chance. It also contradicts the belief nearly all of us have that we are doing our job as well as it can be done. But evidence of the bell curve is starting to trickle out, to doctors and patients alike, and we are only beginning to find out what happens when it does.

In medicine, we are used to confronting failure; all doctors have unforeseen deaths and complications. What we're not used to doing is comparing our records of success and failure with those of our peers. I am a surgeon in a department that is, our members like to believe, one of the best in the country. But the truth is that we have had no reliable evidence about whether we're as good as we think we are. Baseball teams have win-loss records. Businesses have quarterly earnings reports. What about doctors?

There is a company on the Web called HealthGrades, which for $17.95 will give you a report card on any physician you choose. Not long ago, I requested the company's report cards on me and several of my colleagues. They don't tell you that much. You will learn, for instance, that I am certified in my specialty, have no criminal convictions, have not been fired from any hospital, have not had my license suspended or revoked, and have not been disciplined for misconduct. This is no doubt useful to know. But it sets the bar a tad low, doesn't it?

In recent years, there has been a proliferation of efforts to measure how various hospitals and doctors perform. No one has found the task easy. One difficulty has been figuring out what to measure. For six years, from 1986 to 1992, the
federal government released an annual report that came to be known as the Death List. It ranked all the hospitals in the country by their death rate for elderly and disabled patients on Medicare. The spread was alarmingly wide, and the Death List made headlines the first year it came out. But the rankings proved to be almost useless. Death among the elderly or disabled mostly has to do with how old or sick they are to begin with, and the statisticians could never quite work out how to apportion blame between nature and doctors. Volatility in the numbers was one sign of the trouble. Hospitals' rankings seesawed dramatically from one year to the next due to a handful of random deaths. It was unclear what kind of changes would improve their performance (other than sending their sickest patients to other hospitals). Pretty soon the public simply ignored the rankings.

Even with younger patients, death rates are a poor metric for how doctors do. After all, very few young patients die, and when they do it's rarely a surprise; most already have metastatic cancer or horrendous injuries or the like. What one really wants to know is how we perform in typical circumstances--some kind of score for the immediate results, perhaps, and also a measure of the processes involved. For patients with pneumonia, how often does my hospital get them the correct antibiotic, and on the whole how do they do? How do our results compare with those of other hospitals?

Gathering this kind of data can be difficult. Medicine still relies heavily on paper records, so to collect information you have to send people to either scour the charts or track the patients themselves, both of which are expensive and laborious propositions. Recent privacy regulations have made the task
still harder. Yet it is starting to be done. The country's veterans' hospitals have all now brought in staff who do nothing but record and compare surgeons' complication rates and death rates. Fourteen teaching hospitals, including my own, have recently joined together to do the same. California, New Jersey, New York, and Pennsylvania have been collecting and reporting data on every cardiac surgeon in their states for years.

O
NE SMALL FIELD
in medicine has been far ahead of most others in measuring the results its practitioners achieve: cystic fibrosis care. For forty years, the Cystic Fibrosis Foundation has gathered detailed data from the country's cystic fibrosis treatment centers. It did so not because it is more enlightened than everyone else but because, in the 1960s, a pediatrician from Cleveland named LeRoy Matthews was driving people in the field crazy.

Matthews had started a cystic fibrosis treatment program as a young pulmonary specialist at Babies and Children's Hospital in Cleveland, in 1957, and within a few years was claiming to have an annual mortality rate of less than 2 percent. To anyone treating CF at the time, it was a preposterous assertion. National mortality rates for the disease were estimated to be higher than 20 percent a year, and the average patient died by the age of three. Yet here was Matthews saying that he and his colleagues could stop the disease from doing serious harm for years. "How long [our patients] will live remains to be seen, but I expect most of them to come to my funeral," he told one conference of physicians.

In 1964, the Cystic Fibrosis Foundation gave a University
of Minnesota pediatrician named Warren Warwick a modest budget of ten thousand dollars to collect reports on every patient treated at the thirty-one CF centers in the United States that year--data that would test Matthews's claim. Several months later, he had the results: the median estimated age at death for patients in Matthews's center was twenty-one years, seven times the age of patients treated elsewhere. Matthews was what we'd now call a positive deviant. He had not had a single death among patients younger than six in at least five years.

Unlike pediatricians elsewhere, Matthews viewed CF not as a sudden affliction but as a cumulative disease and provided aggressive preventive treatment to stave it off long before his patients became visibly sick from it. He made his patients sleep each night in a plastic tent filled with a continuous aerosolized water mist so dense you could barely see through it. This thinned the tenacious mucus that clogged their airways, enabling them to cough it up. Using an innovation of British pediatricians, he also had family members clap on the children's chests daily to help loosen the mucus. After Warwick's report came out, Matthews's treatment quickly became the standard in this country. The American Thoracic Society endorsed his approach, and Warwick's data registry on treatment centers proved so useful that the Cystic Fibrosis Foundation has continued it ever since.

Looking at the data over time is both fascinating and disconcerting. By 1966, mortality from CF nationally had dropped so much that the average life expectancy of CF patients had already reached ten years. By 1972, it was eighteen years--a rapid and remarkable transformation. At the same
time, though, Matthews's center had got even better. The foundation never identified individual centers in its data; to ensure participation, it guaranteed anonymity. But Matthews's center published its results. By the early 1970s, 95 percent of patients who had gone there before severe lung disease set in were living past their eighteenth birthday. There was a bell curve, and the spread had narrowed a little. Yet every time the average moved up, Matthews and a few others somehow managed to stay ahead of the pack.

In 2003, life expectancy with CF had risen to thirty-three years nationally, but at the best center it was more than forty-seven. Experts have become as leery of life-expectancy calculations as they are of hospital death rates, but other measures tell the same story. For example, at the median center, lung function for patients with CF--the best predictor of survival--is about three-quarters of what it is for people without CF. At the top centers, the average lung function of patients is indistinguishable from that of children who do not have CF. Some allege that the differences are explained simply by the differences in the specific gene patients inherit or by the social class of their families. But according to a recent study, such factors, even taken together, explain at best a quarter of the variability--and nothing about how some centers have kept their average CF patient as normal as children without the disease.

What makes the wide variability especially puzzling is that our system for CF care is so much more sophisticated than that for most other diseases. CF care works the way we want all of medicine to work. Patients receive care in one of 117 ultraspecialized centers across the country. All centers
undergo a rigorous certification process. Their doctors have a high volume of experience in caring for people with CF. They all follow the same guidelines for CF treatment, guidelines that are far more detailed than we have in most of medicine. They all participate in research trials to figure out new and better treatments. You would think, therefore, that their results would be much the same. Yet the differences are enormous. Patients have not known this. So what happens when they find out?

I
N THE WINTER
of 2001, the Pages and twenty other families were invited by their doctors at Cincinnati Children's to a meeting about the CF program there. Annie was seven years old now, a lively second grader. She was still not growing enough, and a simple cold could be hellish for her, but her lung function had been stable. The families gathered in a large conference room at the hospital. After a brief introduction, the doctors started flashing PowerPoint slides on a screen: here is how the top programs do on nutrition and respiratory performance, and here is how Cincinnati does. It was a kind of experiment in openness. The doctors were nervous. Some were opposed to having the meeting at all. But hospital leaders had insisted on going ahead. The reason was Don Berwick.

Berwick is a former pediatrician who runs a nonprofit organization in Boston called the Institute for Healthcare Improvement. The institute has provided multimillion-dollar grants to hospitals that are willing to try his ideas for improving medical practice. Cincinnati's CF program won one of the
grants. And among Berwick's key stipulations was that recipients had to open up their information to their patients--to "go naked," as one doctor put it.

Berwick is an unusual figure in medicine. In 2002, the industry publication
Modern Healthcare
listed him as the third most powerful person in American health care. Unlike the others on the list, he is powerful not because of the position he holds. (The secretary of health and human services was No. 1, and the head of Medicare and Medicaid was No. 2.) He is powerful because of how he thinks.

At a conference in December 1999, Berwick gave a forty-minute speech distilling his ideas about the failings of American health care. Years afterward, people are still talking about the speech. The video of it circulated like samizdat. (That was how I saw it--on a grainy, overplayed VHS tape--about a year later.) A booklet with the transcript was sent to thousands of doctors around the country. Berwick is middle-aged, soft-spoken, and unprepossessing, and he knows how to use his apparent ordinariness to his advantage. He began his speech with a gripping story about a 1949 Montana forest fire that engulfed a parachute brigade of firefighters. Panicking, they ran, trying to make it up a 76 percent grade and over a crest to safety. But their commander, a man named Wag Dodge, saw that their plan wasn't going to work. So he stopped, took out some matches, and set the tall dry grass ahead of him on fire. The new blaze caught and rapidly spread up the slope. He stepped into the middle of the burned-out area it left behind, lay down, and called out to his crew to join him. He had invented, on the spot, what came to be called an "escape fire," and it later became a standard part of Forest Service fire training.
His men, however, either thought he was crazy or never heard his calls, and they ran past him. All but two were caught by the inferno and perished. Inside his escape fire, Dodge survived virtually unharmed.

As Berwick explained, the firefighters' organization had unraveled. The men had lost their ability to think coherently, to act together, to recognize that a lifesaving idea might be possible. This is what happens to all flawed organizations in a disaster, and, he argued, this is what is happening in modern health care. As medicine tries to cope with the advancing complexity of knowledge and treatment, it is falling short in performing even the simplest of its tasks. To fix medicine, Berwick maintained, we need to do two things: measure ourselves and be more open about what we are doing. We should be routinely comparing the performance of doctors and hospitals, looking at everything from surgical complication rates to how often a drug ordered for a patient is delivered correctly and on time. And, he insisted, hospitals should give patients total access to the information. "'No secrets' is the new rule in my escape fire," he said. He argued that openness would drive improvement, if simply through embarrassment. It would make it clear that the well-being and convenience of patients, not of doctors, were paramount. It would also serve a fundamental moral good, because people should be able to learn about anything that affects their lives.

Berwick's institute was given serious money from the Robert Wood Johnson Foundation to offer to those who used his ideas. And so the doctors, nurses, and social workers of Cincinnati Children's stood uncertainly before a crowd of
patients' families in that hospital conference room, told them how poorly the program's results ranked, and announced a plan for doing better. Surprisingly, not a single family chose to leave the program.