Better (25 page)

He produced his most far-reaching invention almost two decades ago--a mechanized chest-thumping vest for patients to wear. The chief difficulty for people with CF is sticking with the laborious daily regimen of care, particularly the manual chest therapy. It requires another person's help. It requires conscientiousness, making sure to bang on each of the fourteen locations on the patient's chest. And it requires consistency, doing this twice a day, every day, year after year. Warwick had become fascinated by studies showing that inflating and deflating a blood-pressure cuff around a dog's chest could mobilize its lung secretions, and in the mid-1980s he created what is now known as the Vest. It looks like a black flak jacket with two vacuum hoses coming out of the sides. These are hooked up to a compressor that shoots quick blasts of air in and out of the vest at high frequencies. (I talked to a patient while he had one of these on. He vibrated like a car on a rutted back road.) Studies eventually showed that Warwick's device was at least as effective as manual chest therapy--and was used far more consistently. Today, 45,000 patients with CF and other lung diseases use the technology.

Like most other medical clinics, the Minnesota Cystic Fibrosis Center has several physicians and many more staff members. Warwick established a weekly meeting to review everyone's care for their patients, and he insists on a degree of uniformity that clinicians usually find intolerable. Some
chafe. He can have, as one of the doctors put it, "somewhat of an absence of, um, collegial respect for different care plans." And although he stepped down as director of the center in 1999, to let a protege, Carlos Milla, take over, he remains its guiding spirit. He and his colleagues aren't content if their patients' lung function is 80 percent of normal, or even 90 percent. They aim for 100 percent--or better. Almost 10 percent of the children at his center get supplemental feedings through a latex tube surgically inserted into their stomachs, simply because, by Warwick's standards, they were not gaining enough weight. There's no published research showing that you need to do this. But not a single child or teenager at the center has died in almost a decade. Its oldest patient is now sixty-seven.

In medicine, we have learned to appreciate the danger of ad hoc experimentation on patients--of cowboy physicians. We endeavor to stick to established findings. But with his unblinking focus on his patients' actual results, Warwick has been able to innovate successfully. And he has become almost contemptuous of established findings. National clinical guidelines for care are, he says, "a record of the past, and little more--they should have an expiration date." I accompanied him as he visited another of his patients, Scott Pieper. When Pieper came to Fairview, at the age of thirty-two, he had lost at least 80 percent of his lung capacity. He was too weak and short of breath to take a walk, let alone work, and he wasn't expected to last a year. That was fourteen years ago.

"Some days, I think, This is it--I'm not going to make it," Pieper told me. "But other times I think, I'm going to make sixty, seventy, maybe more." For the past several
months, Warwick had Pieper trying a new idea--wearing his vest not only for two daily thirty-minute sessions but also while napping for two hours in the middle of the day. Falling asleep in that shuddering thing took some getting used to. But Pieper was soon able to take up bowling, his first regular activity in years. He joined a two-night-a-week league. He couldn't go four games, and his score always dropped in the third game, but he'd worked his average up to 177. "Any ideas about what we could do so you could last for that extra game, Scott?" Warwick asked. Well, Pieper said, he'd noticed that in the cold--anything below fifty degrees--and when humidity was below 50 percent, he did better. Warwick suggested doing an extra hour in the vest on warm or humid days and on every game day. Pieper said he'd try it.

We are used to thinking that a doctor's ability depends mainly on science and skill. The lesson from Minneapolis--and indeed from battlefield medical tents in Iraq, villages with outbreaks of polio, birthing rooms across the country, and all the other places I have described in this book--is that these may be the easiest parts of care. Even doctors with great knowledge and technical skill can have mediocre results; more nebulous factors like aggressiveness and diligence and ingenuity can matter enormously. In Cincinnati and in Minneapolis, the doctors are equally capable and well versed in the data on CF. But if Annie Page--who has had no breathing problems or major setbacks--were in Minneapolis she would almost certainly have had a feeding tube in her stomach and Warwick's team hounding her to figure out ways to make her breathing even better than normal.

Don Berwick believes that the subtleties of
high-performance medical practice can be identified and learned. But the lessons are hidden because no one knows who the high performers really are. Only if we know the results from all can we identify the positive deviants and learn from them. If we are genuinely curious about how the best achieve their results, Berwick believes, then the ideas will spread.

The test of Berwick's theory is now under way. In December 2006, the Cystic Fibrosis Foundation succeeded in persuading its centers to make public their individual results, adjusted for the severity of disease in their populations. The information is now posted for all to see on the foundation Web site,
www.cff.org
--the first field in medicine to voluntarily do such a thing.

The Cincinnati CF team has already begun monitoring the nutrition and lung function of individual patients the way Warwick does, and it is getting more aggressive about pushing the results higher, too. Yet you have to wonder whether it is possible to replicate people like Warwick, with their intense drive and constant experimenting. In the few years since the Cystic Fibrosis Foundation began bringing together centers willing to share their data, certain patterns have begun to emerge, according to Bruce Marshall, the head of quality improvement for the foundation. All the centers appear to have made significant progress. None, however, have progressed more than centers like Fairview.

"You look at the rates of improvement in different quartiles, and it's the centers in the top quartile that are improving fastest," Marshall says. "They are at risk of breaking away." What the best may have, above all, is a capacity to learn and change--and to do so faster than everyone else.

O
NCE WE ACKNOWLEDGE
that, no matter how much we improve our average, the bell curve isn't going away, we're left with all sorts of questions. Will being in the bottom half be used against doctors? Will we be expected to tell our patients how we score? Will patients leave us? Will those at the bottom be paid less than those at the top? The answer to all these questions is likely yes.

Recently, for example, there has been a rapid shift toward "paying for quality." (No one ever says "docking for mediocrity," but it amounts to the same thing.) Across the country, insurers like Medicare, Aetna, and the Blue Cross-Blue Shield companies now hold back 10 percent or more of payments to physicians until specific quality goals are met. Medicare has decided not to pay surgeons for intestinal transplantation operations at all unless the doctors achieve a predefined success rate--and it may extend the practice to other procedures. Not surprisingly, this makes doctors anxious. I once sat in on a presentation of the concept to an audience of doctors hearing about it for the first time. By the end, some in the crowd were practically shouting with indignation: We're going to be paid according to our grades? Who is doing the grading? For God's sake, how?

We in medicine are not the only ones being graded nowadays. Firefighters, CEOs, and salesmen are. Even teachers are being graded, and, in some places, being paid accordingly. Yet we all feel uneasy about being judged by such grades. They never seem to measure the right things. They don't take into account circumstances beyond our control.
They are misused; they are unfair. Still, the simple facts remain: there is a bell curve in all human activities, and the differences you measure usually matter.

I asked Honor Page what she would do if, after all her efforts and the efforts of the doctors and nurses at Cincinnati Children's Hospital to ensure that "there was no place better in the world" to receive cystic fibrosis care, the program's comparative performance still rated as resoundingly average.

"I can't believe that's possible," she told me. The staff have worked so hard, she said, that she could not imagine they would fail.

After I pressed her, though, she told me, "I don't think I'd settle for Cincinnati if it remains just average." Then she thought about it some more. Would she really move Annie away from people who had been so devoted all these years, just because of the numbers? Well, maybe. But, at the same time, she wanted me to understand that their effort counted for more than she was able to express.

I do not have to consider these matters for very long before I start thinking about where I would stand on a bell curve for the operations I do. In my area of specialization, surgery for endocrine tumors, I would hope that my statistics prove to be better than those of surgeons who only occasionally do this kind of surgery. But am I up in Warwickian territory? Do I have to answer this question?

The hardest question for anyone who takes responsibility for what he or she does is, What if I turn out to be average? If we took all the surgeons at my level of experience, compared our results, and discovered that I am one of the worst, the answer would be easy: I'd turn in my scalpel. But what if I were
a B-? Working as I do in a city that's mobbed with surgeons, how could I justify putting patients under the knife? I could tell myself, Someone's got to be average. If the bell curve is a fact, then so is the reality that most doctors are going to be average. There is no shame in being one of them, right?

Except, of course, there is. What is troubling is not just being average but settling for it. Everyone knows that averageness is, for most of us, our fate. And in certain matters--looks, money, tennis--we would do well to accept this. But in your surgeon, your child's pediatrician, your police department, your local high school? When the stakes are our lives and the lives of our children, we want no one to settle for average.

I
was in the operating room doing surgery one day, and across the drapes on the anesthesia team was Dr. Mark Simon, a twenty-nine-year-old resident. This was not a difficult case. So we got to talking. I mentioned the cystic fibrosis programs I'd been thinking about, and it turned out the discussion hit closer to home than I'd realized--because Mark has cystic fibrosis. I'd had no idea, although we'd been in on many cases together and he has the short stature and raspy cough one often sees in people with the disease. The illness has been a tremendous struggle, he told me. He managed to stay healthy through his first three years in medical school. But, in his fourth year, his disease progressed, and he had to be hospitalized for four weeks. The next year, in Boston, in residency,
he had to miss six weeks. Now, only halfway through his second year, he'd already been hospitalized another month more. He has become, at twenty-nine, all too aware that the average life expectancy for a person with CF is just thirty-three years. So the question we got talking about was: What is more likely to save his life--investment in laboratory science or in efforts to improve how existing medical care performs?

The answer most people would come to is investment in laboratory science--the search for a cure. And in 1989, when scientists discovered the gene for cystic fibrosis, that would have seemed a wise choice: a cure was believed to be only a few years away. Dramatic progress, however, did not occur. Mark has not let go of the hope that a cure will be found. But he was not putting any bets on that happening in time to help him. Instead, he said, his hopes were focused on efforts to monitor and improve and transform clinical performance using know-how already in existence. He believed that of all the work being done, this was the work that would save more lives. And I agreed with him.

To be sure, we need innovations to expand our knowledge and therapies, whether for CF or childhood lymphoma or heart disease or any of the other countless ways in which the human body fails. But we have not effectively used the abilities science has already given us. And we have not made remotely adequate efforts to change that. When we've made a science of performance, however--as we've seen with hand washing, wounded soldiers, child delivery--thousands of lives have been saved. Indeed, the scientific effort to improve performance in medicine--an effort that at present gets only a
miniscule portion of scientific budgets--can arguably save more lives in the next decade than bench science, more lives than research on the genome, stem cell therapy, cancer vaccines, and all the other laboratory work we hear about in the news. The stakes could not be higher.

Consider breast cancer. Rates of death from breast cancer have fallen about 25 percent in industrialized countries since 1990. A study of data from a U.S. breast cancer registry recently showed that at least a quarter, and likely more than half, of that decline was due simply to increased use of screening mammography by women. Mammography saves lives by allowing breast cancers to be caught and treated while they're still small, before they can even be felt--and hopefully before they have spread. But the key to its working is that women faithfully get a mammogram once a year. Less often leaves too much time in between for a breast cancer to form, grow, and spread undetected.