2018-02-23 18:58:03 +00:00
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---
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created_at: '2014-04-29T01:23:59.000Z'
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title: What happens when patients find out how good their doctors really are? (2004)
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url: http://newyorker.com/archive/2004/12/06/041206fa_fact?currentPage=all
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author: danso
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points: 168
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story_text: ''
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comment_text:
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num_comments: 53
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story_id:
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story_title:
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story_url:
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parent_id:
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created_at_i: 1398734639
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_tags:
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- story
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- author_danso
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- story_7664301
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objectID: '7664301'
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2018-06-08 12:05:27 +00:00
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year: 2004
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2018-02-23 18:58:03 +00:00
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---
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2018-03-03 09:35:28 +00:00
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Every illness is a story, and Annie Page’s began with the kinds of
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small, unexceptional details that mean nothing until seen in hindsight.
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Like the fact that, when she was a baby, her father sometimes called her
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Little Potato Chip, because her skin tasted salty when he kissed her. Or
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that Annie’s mother noticed that her breathing was sometimes a little
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wheezy, though the pediatrician heard nothing through his stethoscope.
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2018-02-23 18:19:40 +00:00
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2018-03-03 09:35:28 +00:00
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The detail that finally mattered was Annie’s size. For a while, Annie’s
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fine-boned petiteness seemed to be just a family trait. Her sister,
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Lauryn, four years older, had always been at the bottom end of the
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pediatrician’s growth chart for girls her age. By the time Annie was
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three years old, however, she had fallen off the chart. She stood an
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acceptable thirty-four inches tall but weighed only twenty-three
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pounds—less than ninety-eight per cent of girls her age. She did not
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look malnourished, but she didn’t look quite healthy, either.
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2018-02-23 18:19:40 +00:00
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2018-03-03 09:35:28 +00:00
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“Failure to thrive” is what it’s called, and there can be scores of
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explanations: pituitary disorders, hypothyroidism, genetic defects in
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metabolism, inflammatorybowel disease, lead poisoning, H.I.V., tapeworm
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infection. In textbooks, the complete list is at least a page long.
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Annie’s doctor did a thorough workup. Then, at four o’clock on July 27,
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1997—“I’ll never forget that day,” her mother, Honor, says—the
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pediatrician called the Pages at home with the results of a sweat test.
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2018-02-23 18:19:40 +00:00
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2018-03-03 09:35:28 +00:00
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It’s a strange little test. The skin on the inside surface of a child’s
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forearm is cleaned and dried. Two small gauze pads are applied—one
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soaked with pilocarpine, a medicine that makes skin sweat, and the other
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with a salt solution. Electrodes are hooked up. Then a mild electric
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current is turned on for five minutes, driving the pilocarpine into the
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skin. A reddened, sweaty area about an inch in diameter appears on the
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skin, and a collection pad of dry filter paper is taped over it to
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absorb the sweat for half an hour. A technician then measures the
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concentration of chloride in the pad.
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Over the phone, the doctor told Honor that her daughter’s chloride level
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was far higher than normal. Honor is a hospital pharmacist, and she had
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come across children with abnormal results like this. “All I knew was
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that it meant she was going to die,” she said quietly when I visited the
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Pages’ home, in the Cincinnati suburb of Loveland. The test showed that
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Annie had cystic fibrosis.
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Cystic fibrosis is a genetic disease. Only a thousand American children
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per year are diagnosed as having it. Some ten million people in the
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United States carry the defective gene, but the disorder is recessive: a
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child will develop the condition only if both parents are carriers and
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both pass on a copy. The gene—which was discovered, in 1989, sitting out
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on the long arm of chromosome No. 7—produces a mutant protein that
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interferes with cells’ ability to manage chloride. This is what makes
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sweat from people with CF so salty. (Salt is sodium chloride, after
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all.) The chloride defect thickens secretions throughout the body,
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turning them dry and gluey. In the ducts of the pancreas, the flow of
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digestive enzymes becomes blocked, making a child less and less able to
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absorb food. This was why Annie had all but stopped growing. The effects
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on the lungs, however, are what make the disease lethal. Thickened mucus
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slowly fills the small airways and hardens, shrinking lung capacity.
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Over time, the disease leaves a child with the equivalent of just one
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functioning lung. Then half a lung. Then none at all.
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The one overwhelming thought in the minds of Honor and Don Page was: We
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need to get to Children’s. Cincinnati Children’s Hospital is among the
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most respected pediatric hospitals in the country. It was where Albert
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Sabin invented the oral polio vaccine. The chapter on cystic fibrosis in
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the “Nelson Textbook of Pediatrics”—the bible of the specialty—was
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written by one of the hospital’s pediatricians. The Pages called and
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were given an appointment for the next morning.
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“We were there for hours, meeting with all the different members of the
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team,” Honor recalled. “They took Annie’s blood pressure, measured her
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oxygen saturation, did some other tests. Then they put us in a room, and
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the pediatrician sat down with us. He was very kind, but frank, too. He
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said, ‘Do you understand it’s a genetic disease? That it’s nothing you
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did, nothing you can catch?’ He told us the median survival for patients
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was thirty years. In Annie’s lifetime, he said, we could see that go to
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forty. For him, he was sharing a great accomplishment in CF care. And
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the news was better than our worst fears. But only forty\! That’s not
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what we wanted to hear.”
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The team members reviewed the treatments. The Pages were told that they
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would have to give Annie pancreatic-enzyme pills with the first bite of
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every meal. They would have to give her supplemental vitamins. They also
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had to add calories wherever they could—putting tablespoons of butter on
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everything, giving her ice cream whenever she wanted, and then putting
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chocolate sauce on it.
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A respiratory therapist explained that they would need to do manual
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chest therapy at least twice a day, half-hour sessions in which they
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would strike—“percuss”—their daughter’s torso with a cupped hand at each
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of fourteen specific locations on the front, back, and sides in order to
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loosen the thick secretions and help her to cough them up. They were
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given prescriptions for inhaled medicines. The doctor told them that
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Annie would need to come back once every three months for extended
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checkups. And then they went home to start their new life. They had been
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told almost everything they needed to know in order to give Annie her
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best chance to live as long as possible.
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The one thing that the clinicians failed to tell them, however, was that
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Cincinnati Children’s was not, as the Pages supposed, among the
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country’s best centers for children with cystic fibrosis. According to
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data from that year, it was, at best, an average program. This was no
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small matter. In 1997, patients at an average center were living to be
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just over thirty years old; patients at the top center typically lived
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to be forty-six. By some measures, Cincinnati was well below average.
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The best predictor of a CF patient’s life expectancy is his or her lung
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function. At Cincinnati, lung function for patients under the age of
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twelve—children like Annie—was in the bottom twenty-five per cent of the
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country’s CF patients. And the doctors there knew it.
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It used to be assumed that differences among hospitals or doctors in a
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particular specialty were generally insignificant. If you plotted a
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graph showing the results of all the centers treating cystic fibrosis—or
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any other disease, for that matter—people expected that the curve would
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look something like a shark fin, with most places clustered around the
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very best outcomes. But the evidence has begun to indicate otherwise.
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What you tend to find is a bell curve: a handful of teams with
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disturbingly poor outcomes for their patients, a handful with remarkably
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good results, and a great undistinguished middle.
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In ordinary hernia operations, the chances of recurrence are one in ten
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for surgeons at the unhappy end of the spectrum, one in twenty for those
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in the middle majority, and under one in five hundred for a handful. A
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Scottish study of patients with treatable colon cancer found that the
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ten-year survival rate ranged from a high of sixty-three per cent to a
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low of twenty per cent, depending on the surgeon. For heartbypass
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patients, even at hospitals with a good volume of experience,
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risk-adjusted death rates in New York vary from five per cent to under
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one per cent—and only a very few hospitals are down near the
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one-per-cent mortality rate.
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It is distressing for doctors to have to acknowledge the bell curve. It
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belies the promise that we make to patients who become seriously ill:
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that they can count on the medical system to give them their very best
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chance at life. It also contradicts the belief nearly all of us have
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that we are doing our job as well as it can be done. But evidence of the
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bell curve is starting to trickle out, to doctors and patients alike,
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and we are only beginning to find out what happens when it does.
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In medicine, we are used to confronting failure; all doctors have
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unforeseen deaths and complications. What we’re not used to is comparing
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our records of success and failure with those of our peers. I am a
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surgeon in a department that is, our members like to believe, one of the
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best in the country. But the truth is that we have had no reliable
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evidence about whether we’re as good as we think we are. Baseball teams
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have win-loss records. Businesses have quarterly earnings reports. What
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about doctors?
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There is a company on the Web called HealthGrades, which for $7.95 will
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give you a report card on any physician you choose. Recently, I
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requested the company’s report cards on me and several of my colleagues.
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They don’t tell you that much. You will learn, for instance, that I am
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in fact certified in my specialty, have no criminal convictions, have
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not been fired from any hospital, have not had my license suspended or
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revoked, and have not been disciplined. This is no doubt useful to know.
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But it sets the bar a tad low, doesn’t it?
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In recent years, there have been numerous efforts to measure how various
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hospitals and doctors perform. No one has found the task easy. One
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difficulty has been figuring out what to measure. For six years, from
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1986 to 1992, the federal government released an annual report that came
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to be known as the Death List, which ranked all the hospitals in the
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country by their death rate for elderly and disabled patients on
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Medicare. The spread was alarmingly wide, and the Death List made
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headlines the first year it came out. But the rankings proved to be
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almost useless. Death among the elderly or disabled mostly has to do
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with how old or sick they are to begin with, and the statisticians could
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never quite work out how to apportion blame between nature and doctors.
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Volatility in the numbers was one sign of the trouble. Hospitals’
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rankings varied widely from one year to the next based on a handful of
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random deaths. It was unclear what kind of changes would improve their
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performance (other than sending their sickest patients to other
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hospitals). Pretty soon the public simply ignored the rankings.
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Even with younger patients, death rates are a poor metric for how
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doctors do. After all, very few young patients die, and when they do
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it’s rarely a surprise; most already have metastatic cancer or
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horrendous injuries or the like. What one really wants to know is how we
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perform in typical circumstances. After I’ve done an appendectomy, how
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long does it take for my patients to fully recover? After I’ve taken out
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a thyroid cancer, how often do my patients have serious avoidable
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complications? How do my results compare with those of other surgeons?
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Getting this kind of data can be difficult. Medicine still relies
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heavily on paper records, so to collect information you have to send
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people to either scour the charts or track the patients themselves, both
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of which are expensive and laborious propositions. Recent privacy
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regulations have made the task still harder. Yet it is being done. The
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country’s veterans’ hospitals have all now brought in staff who do
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nothing but record and compare surgeons’ complication rates and death
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rates. Fourteen teaching hospitals, including my own, have recently
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joined together to do the same. California, New Jersey, New York, and
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Pennsylvania have been collecting and reporting data on every cardiac
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surgeon in their states for several years.
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One small field in medicine has been far ahead of most others in
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measuring the performance of its practitioners: cystic-fibrosis care.
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For forty years, the Cystic Fibrosis Foundation has gathered detailed
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data from the country’s cystic-fibrosis treatment centers. It did not
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begin doing so because it was more enlightened than everyone else. It
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did so because, in the nineteen-sixties, a pediatrician from Cleveland
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named LeRoy Matthews was driving people in the field crazy.
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Matthews had started a cystic-fibrosis treatment program as a young
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pulmonary specialist at Babies and Children’s Hospital, in Cleveland, in
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1957, and within a few years was claiming to have an annual mortality
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rate that was less than two per cent. To anyone treating CF at the time,
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it was a preposterous assertion. National mortality rates for the
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disease were estimated to be higher than twenty per cent a year, and the
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average patient died by the age of three. Yet here was Matthews saying
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that he and his colleagues could stop the disease from doing serious
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harm for years. “How long \[our patients\] will live remains to be seen,
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but I expect most of them to come to my funeral,” he told one conference
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of physicians.
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In 1964, the Cystic Fibrosis Foundation gave a University of Minnesota
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pediatrician named Warren Warwick a budget of ten thousand dollars to
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collect reports on every patient treated at the thirty-one CF centers in
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the United States that year—data that would test Matthews’s claim.
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Several months later, he had the results: the median estimated age at
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death for patients in Matthews’s center was twenty-one years, seven
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times the age of patients treated elsewhere. He had not had a single
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death among patients younger than six in at least five years.
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Unlike pediatricians elsewhere, Matthews viewed CF as a cumulative
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disease and provided aggressive treatment long before his patients
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became sick. He made his patients sleep each night in a plastic tent
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filled with a continuous, aerosolized water mist so dense you could
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barely see through it. This thinned the tenacious mucus that clogged
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their airways and enabled them to cough it up. Like British
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pediatricians, he also had family members clap on the children’s chests
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daily to help loosen the mucus. After Warwick’s report came out,
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Matthews’s treatment quickly became the standard in this country. The
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American Thoracic Society endorsed his approach, and Warwick’s data
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registry on treatment centers proved to be so useful that the Cystic
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Fibrosis Foundation has continued it ever since.
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Looking at the data over time is both fascinating and disturbing. By
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1966, mortality from CF nationally had dropped so much that the average
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life expectancy of CF patients had already reached ten years. By 1972,
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it was eighteen years—a rapid and remarkable transformation. At the same
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time, though, Matthews’s center had got even better. The foundation has
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never identified individual centers in its data; to insure
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participation, it has guaranteed anonymity. But Matthews’s center
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published its results. By the early nineteen-seventies, ninety-five per
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cent of patients who had gone there before severe lung disease set in
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were living past their eighteenth birthday. There was a bell curve, and
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the spread had narrowed a little. Yet every time the average moved up
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Matthews and a few others somehow managed to stay ahead of the pack. In
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2003, life expectancy with CF had risen to thirty-three years
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nationally, but at the best center it was more than forty-seven. Experts
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have become as leery of life-expectancy calculations as they are of
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hospital death rates, but other measures tell the same story. For
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example, at the median center, lung function for patients with CF—the
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best predictor of survival—is about three-quarters of what it is for
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people without CF. At the top centers, the average lung function of
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patients is indistinguishable from that of children who do not have CF.
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What makes the situation especially puzzling is that our system for CF
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care is far more sophisticated than that for most diseases. The hundred
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and seventeen CF centers across the country are all ultra-specialized,
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undergo a rigorous certification process, and have lots of experience in
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caring for people with CF. They all follow the same detailed guidelines
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for CF treatment. They all participate in research trials to figure out
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new and better treatments. You would think, therefore, that their
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results would be much the same. Yet the differences are enormous.
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Patients have not known this. So what happens when they find out?
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In the winter of 2001, the Pages and twenty other families were invited
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by their doctors at Cincinnati Children’s to a meeting about the CF
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program there. Annie was seven years old now, a lively, brown-haired
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second grader. She was still not growing enough, and a simple cold could
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be hellish for her, but her lung function had been stable. The families
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gathered in a large conference room at the hospital. After a brief
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introduction, the doctors started flashing PowerPoint slides on a
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screen: here is how the top programs do on nutrition and respiratory
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performance, and here is how Cincinnati does. It was a kind of
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experiment in openness. The doctors were nervous. Some were opposed to
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having the meeting at all. But hospital leaders had insisted on going
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ahead. The reason was Don Berwick.
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Berwick runs a small, nonprofit organization in Boston called the
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Institute for Healthcare Improvement. The institute provided
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multimillion-dollar grants to hospitals that were willing to try his
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ideas for improving medicine. Cincinnati’s CF program won one of the
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grants. And among Berwick’s key stipulations was that recipients had to
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open up their information to their patients—to “go naked,” as one doctor
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put it.
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Berwick, a former pediatrician, is an unusual figure in medicine. In
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2002, the industry publication Modern Healthcare listed him as the third
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most powerful person in American health care. Unlike the others on the
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list, he is powerful not because of the position he holds. (The
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Secretary of Health and Human Services, Tommy Thompson, was No. 1, and
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the head of Medicare and Medicaid was No. 2.) He is powerful because of
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how he thinks.
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In December, 1999, at a health-care conference, Berwick gave a
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forty-minute speech distilling his ideas about the failings of American
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health care. Five years on, people are still talking about the speech.
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The video of it circulated like samizdat. (That was how I saw it: on a
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grainy, overplayed tape, about a year later.) A booklet with the
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transcript was sent to thousands of doctors around the country. Berwick
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|
is middle-aged, soft-spoken, and unprepossessing, and he knows how to
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use his apparent ordinariness to his advantage. He began his speech with
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a gripping story about a 1949 Montana forest fire that engulfed a
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parachute brigade of firefighters. Panicking, they ran, trying to make
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|
|
it up a seventy-six-per-cent grade and over a crest to safety. But their
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commander, a man named Wag Dodge, saw that it wasn’t going to work. So
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he stopped, took out some matches, and set the tall dry grass ahead of
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him on fire. The new blaze caught and rapidly spread up the slope. He
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stepped into the middle of the burned-out area it left behind, lay down,
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and called out to his crew to join him. He had invented what came to be
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called an “escape fire,” and it later became a standard part of Forest
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Service fire training. His men, however, either thought he was crazy or
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never heard his calls, and they ran past him. All but two were caught by
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the inferno and perished. Inside his escape fire, Dodge survived
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virtually unharmed.
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As Berwick explained, the organization had unravelled. The men had lost
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their ability to think coherently, to act together, to recognize that a
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lifesaving idea might be possible. This is what happens to all flawed
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organizations in a disaster, and, he argued, that’s what is happening in
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modern health care. To fix medicine, Berwick maintained, we need to do
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two things: measure ourselves and be more open about what we are doing.
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This meant routinely comparing the performance of doctors and hospitals,
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|
looking at everything from complication rates to how often a drug
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|
ordered for a patient is delivered correctly and on time. And, he
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insisted, hospitals should give patients total access to the
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information. “ ‘No secrets’ is the new rule in my escape fire,” he said.
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He argued that openness would drive improvement, if simply through
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embarrassment. It would make it clear that the well-being and
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convenience of patients, not doctors, were paramount. It would also
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serve a fundamental moral good, because people should be able to learn
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about anything that affects their lives.
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Berwick’s institute was given serious money from the Robert Wood Johnson
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Foundation to offer those who used his ideas. And so the doctors,
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|
nurses, and social workers of Cincinnati Children’s stood uncertainly
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|
before a crowd of patients’ families in that hospital conference room,
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|
told them how poorly the program’s results ranked, and announced a plan
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|
for doing better. Surprisingly, not a single family chose to leave the
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program.
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“We thought about it after that meeting,” Ralph Blackwelder told me. He
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and his wife, Tracey, have eight children, four of whom have CF. “We
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thought maybe we should move. We could sell my business here and start a
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business somewhere else. We were thinking, Why would I want my kids to
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be seen here, with inferior care? I want the very best people to be
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helping my children.” But he and Tracey were impressed that the team had
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told them the truth. No one at Cincinnati Children’s had made any
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|
|
excuses, and everyone appeared desperate to do better. The Blackwelders
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had known these people for years. The program’s nutritionist, Terri
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Schindler, had a child of her own in the program. Their pulmonary
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specialist, Barbara Chini, had been smart, attentive, loving—taking
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|
|
their late-night phone calls, seeing the children through terrible
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|
|
crises, instituting new therapies as they became available. The program
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director, Jim Acton, made a personal promise that there would soon be no
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|
better treatment center in the world.
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Honor Page was alarmed when she saw the numbers. Like the Blackwelders,
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|
the Pages had a close relationship with the team at Children’s, but the
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|
news tested their loyalty. Acton announced the formation of several
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|
|
committees that would work to improve the program’s results. Each
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|
committee, he said, had to have at least one parent on it. This is
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|
|
unusual; hospitals seldom allow patients and families on internal-review
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|
|
committees. So, rather than walk away, Honor decided to sign up for the
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|
|
committee that would reëxamine the science behind patients’ care.
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Her committee was puzzled that the center’s results were not better. Not
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|
only had the center followed national guidelines for CF; two of its
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|
physicians had helped write them. They wanted to visit the top centers,
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|
|
but no one knew which those were. Although the Cystic Fibrosis
|
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|
|
Foundation’s annual reports displayed the individual results for each of
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|
|
the country’s hundred and seventeen centers, no names were attached.
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|
Doctors put in a call and sent e-mails to the foundation, asking for the
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|
|
names of the top five, but to no avail.
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|
Several months later, in early 2002, Don Berwick visited the Cincinnati
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|
|
program. He was impressed by its seriousness, and by the intense
|
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|
|
involvement of the families, but he was incredulous when he learned that
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|
|
the committee couldn’t get the names of the top programs from the
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|
|
foundation. He called the foundation’s executive vice-president for
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|
|
medical affairs, Preston Campbell. “I was probably a bit
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|
|
self-righteous,” Berwick says. “I said, ‘How could you do this?’ And
|
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|
|
he said, ‘You don’t understand our world.’ ” This was the first Campbell
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|
had heard about the requests, and he reacted with instinctive caution.
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|
The centers, he tried to explain, give their data voluntarily. The
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|
|
reason they have done so for forty years is that they have trusted that
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|
|
it would be kept confidential. Once the centers lost that faith, they
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|
|
might no longer report solid, honest information tracking how different
|
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|
|
treatments are working, how many patients there are, and how well they
|
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|
do.
|
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|
Campbell is a deliberate and thoughtful man, a pediatric pulmonologist
|
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|
|
who has devoted his career to cystic-fibrosis patients. The discussion
|
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|
|
with Berwick had left him uneasy. The Cystic Fibrosis Foundation had
|
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|
|
always been dedicated to the value of research; by investing in bench
|
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|
|
science, it had helped decode the gene for cystic fibrosis, produce two
|
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|
|
new drugs approved for patients, and generate more than a dozen other
|
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|
|
|
drugs that are currently being tested. Its investments in tracking
|
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|
|
|
patient care had produced scores of valuable studies. But what do you do
|
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|
|
|
when the research shows that patients are getting care of widely
|
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|
|
|
different quality?
|
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|
|
A couple of weeks after Berwick’s phone call, Campbell released the
|
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|
|
names of the top five centers to Cincinnati. The episode convinced
|
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|
|
|
Campbell and others in the foundation that they needed to join the drive
|
|
|
|
|
toward greater transparency, rather than just react. The foundation
|
|
|
|
|
announced a goal of making the outcomes of every center publicly
|
|
|
|
|
available. But it has yet to come close to doing so. It’s a measure of
|
|
|
|
|
the discomfort with this issue in the cystic-fibrosis world that
|
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|
|
Campbell asked me not to print the names of the top five. “We’re not
|
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|
|
|
ready,” he says. “It’d be throwing grease on the slope.” So far, only a
|
|
|
|
|
few of the nation’s CF treatment centers are committed to going public.
|
|
|
|
|
|
|
|
|
|
Still, after travelling to one of the top five centers for a look, I
|
|
|
|
|
found I could not avoid naming the center I saw—no obscuring physicians’
|
|
|
|
|
identities or glossing over details. There was simply no way to explain
|
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|
|
|
what a great center did without the particulars. The people from
|
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|
|
|
Cincinnati found this, too. Within months of learning which the top five
|
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|
|
|
centers were, they’d spoken to each and then visited what they
|
|
|
|
|
considered to be the very best one, the Minnesota Cystic Fibrosis
|
|
|
|
|
Center, at Fairview-University Children’s Hospital, in Minneapolis. I
|
|
|
|
|
went first to Cincinnati, and then to Minneapolis for comparison.
|
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|
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|
|
What I saw in Cincinnati both impressed me and, given its ranking,
|
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|
|
surprised me. The CF staff was skilled, energetic, and dedicated. They
|
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|
|
|
had just completed a flu-vaccination campaign that had reached more than
|
|
|
|
|
ninety per cent of their patients. Patients were being sent
|
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|
|
questionnaires before their clinic visits so that the team would be
|
|
|
|
|
better prepared for the questions they would have and the services (such
|
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|
|
|
as X-rays, tests, and specialist consultations) they would need. Before
|
|
|
|
|
patients went home, the doctors gave them a written summary of their
|
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|
|
|
visit and a complete copy of their record, something that I had never
|
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|
|
thought to do in my own practice.
|
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|
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|
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|
|
I joined Cori Daines, one of the seven CF-care specialists, in her
|
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|
|
|
clinic one morning. Among the patients we saw was Alyssa. She was
|
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|
|
|
fifteen years old, freckled, skinny, with nails painted loud red,
|
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|
|
|
straight sandy-blond hair tied in a ponytail, a soda in one hand, legs
|
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|
|
crossed, foot bouncing constantly. Every few minutes, she gave a short,
|
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|
|
|
throaty cough. Her parents sat to one side. All the questions were
|
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|
|
directed to her. How had she been doing? How was school going? Any
|
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|
|
|
breathing difficulties? Trouble keeping up with her calories? Her
|
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|
|
answers were monosyllabic at first. But Daines had known Alyssa for
|
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|
|
|
years, and slowly she opened up. Things had mostly been going all right,
|
|
|
|
|
she said. She had been sticking with her treatment regimen—twice-a-day
|
|
|
|
|
manual chest therapy by one of her parents, inhaled medications using a
|
|
|
|
|
nebulizer immediately afterward, and vitamins. Her lung function had
|
|
|
|
|
been measured that morning, and it was sixty-seven per cent of
|
|
|
|
|
normal—slightly down from her usual eighty per cent. Her cough had got
|
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|
|
|
a little worse the day before, and this was thought to be the reason for
|
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|
|
|
the dip. Daines was concerned about stomach pains that Alyssa had been
|
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|
|
|
having for several months. The pains came on unpredictably, Alyssa
|
|
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|
|
said—before meals, after meals, in the middle of the night. They were
|
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|
|
sharp, and persisted for up to a couple of hours. Examinations, tests,
|
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|
|
|
and X-rays had found no abnormalities, but she’d stayed home from school
|
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|
|
|
for the past five weeks. Her parents, exasperated because she seemed
|
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|
|
|
fine most of the time, wondered if the pain could be just in her head.
|
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|
|
Daines wasn’t sure. She asked a staff nurse to check in with Alyssa at
|
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|
|
home, arranged for a consultation with a gastroenterologist and with a
|
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|
|
pain specialist, and scheduled an earlier return visit than the usual
|
|
|
|
|
three months.
|
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|
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|
|
This was, it seemed to me, real medicine: untidy, human, but practiced
|
|
|
|
|
carefully and conscientiously—as well as anyone could ask for. Then I
|
|
|
|
|
went to Minneapolis.
|
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|
|
|
|
|
|
|
|
The director of Fairview-University Children’s Hospital’s
|
|
|
|
|
cystic-fibrosis center for almost forty years has been none other than
|
|
|
|
|
Warren Warwick, the pediatrician who had conducted the study of LeRoy
|
|
|
|
|
Matthews’s suspiciously high success rate. Ever since then, Warwick has
|
|
|
|
|
made a study of what it takes to do better than everyone else. The
|
|
|
|
|
secret, he insists, is simple, and he learned it from Matthews: you do
|
|
|
|
|
whatever you can to keep your patients’ lungs as open as possible.
|
|
|
|
|
Patients with CF at Fairview got the same things that patients
|
|
|
|
|
everywhere did—some nebulized treatments to loosen secretions and unclog
|
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|
|
|
passageways (a kind of mist tent in a mouth pipe), antibiotics, and a
|
|
|
|
|
good thumping on their chests every day. Yet, somehow, everything he did
|
|
|
|
|
was different.
|
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|
|
|
|
|
|
|
In the clinic one afternoon, I joined him as he saw a seventeen-year-old
|
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|
|
high-school senior named Janelle, who had been diagnosed with CF at the
|
|
|
|
|
age of six and had been under his care ever since. She had come for her
|
|
|
|
|
routine three-month checkup. She wore dyed-black hair to her shoulder
|
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|
|
blades, black Avril Lavigne eyeliner, four earrings in each ear, two
|
|
|
|
|
more in an eyebrow, and a stud in her tongue. Warwick is seventy-six
|
|
|
|
|
years old, tall, stooped, and frumpy-looking, with a well-worn tweed
|
|
|
|
|
jacket, liver spots dotting his skin, wispy gray hair—by all
|
|
|
|
|
appearances, a doddering, mid-century academic. He stood in front of
|
|
|
|
|
Janelle for a moment, hands on his hips, looking her over, and then he
|
|
|
|
|
said, “So, Janelle, what have you been doing to make us the best CF
|
|
|
|
|
program in the country?”
|
|
|
|
|
|
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|
|
“It’s not easy, you know,” she said.
|
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|
|
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|
|
They bantered. She was doing fine. School was going well. Warwick pulled
|
|
|
|
|
out her latest lung-function measurements. There’d been a slight dip, as
|
|
|
|
|
there was with Alyssa. Three months earlier, Janelle had been at a
|
|
|
|
|
hundred and nine per cent (she was actually doing better than normal);
|
|
|
|
|
now she was at around ninety per cent. Ninety per cent was still pretty
|
|
|
|
|
good, and some ups and downs in the numbers are to be expected. But this
|
|
|
|
|
was not the way Warwick saw the results.
|
|
|
|
|
|
|
|
|
|
He knitted his eyebrows. “Why did they go down?” he asked.
|
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|
|
Janelle shrugged.
|
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|
|
|
|
|
|
|
|
Any cough lately? No. Colds? No. Fevers? No. Was she sure she’d been
|
|
|
|
|
taking her treatments regularly? Yes, of course. Every day? Yes. Did she
|
|
|
|
|
ever miss treatments? Sure. Everyone does once in a while. How often is
|
|
|
|
|
once in a while?
|
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|
|
|
|
|
|
|
|
Then, slowly, Warwick got a different story out of her: in the past few
|
|
|
|
|
months, it turned out, she’d barely been taking her treatments at all.
|
|
|
|
|
|
|
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|
|
He pressed on. “Why aren’t you taking your treatments?” He appeared
|
|
|
|
|
neither surprised nor angry. He seemed genuinely curious, as if he’d
|
|
|
|
|
never run across this interesting situation before.
|
|
|
|
|
|
|
|
|
|
“I don’t know.”
|
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|
|
|
|
|
|
|
|
He kept pushing. “What keeps you from doing your treatments?”
|
|
|
|
|
|
|
|
|
|
“I don’t know.”
|
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|
|
|
|
|
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|
|
“Up here”—he pointed at his own head—“what’s going on?”
|
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“ I don ’ t know ,” she said.
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He paused for a moment. And then he began speaking to me, taking a new
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tack. “The thing about patients with CF is that they’re good
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scientists,” he said. “They always experiment. We have to help them
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interpret what they experience as they experiment. So they stop doing
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their treatments. And what happens? They don’t get sick . Therefore,
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they conclude, Dr. Warwick is nuts.”
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“Let’s look at the numbers,” he said to me, ignoring Janelle. He went to
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a little blackboard he had on the wall. It appeared to be well used. “A
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person’s daily risk of getting a bad lung illness with CF is 0.5 per
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cent.” He wrote the number down. Janelle rolled her eyes. She began
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tapping her foot. “The daily risk of getting a bad lung illness with CF
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plus treatment is 0.05 per cent,” he went on, and he wrote that number
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down. “So when you experiment you’re looking at the difference between a
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99.95-per-cent chance of staying well and a 99.5-per-cent chance of
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staying well. Seems hardly any difference, right? On any given day, you
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have basically a one-hundred-per-cent chance of being well. But”—he
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paused and took a step toward me—“it is a big difference.” He chalked
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out the calculations. “Sum it up over a year, and it is the difference
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between an eighty-three-per-cent chance of making it through 2004
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without getting sick and only a sixteen-per-cent chance.”
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He turned to Janelle. “How do you stay well all your life? How do you
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become a geriatric patient?” he asked her. Her foot finally stopped
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tapping. “I can’t promise you anything. I can only tell you the odds.”
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In this short speech was the core of Warwick’s world view. He believed
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that excellence came from seeing, on a daily basis, the difference
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between being 99.5-per-cent successful and being 99.95-per-cent
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successful. Many activities are like that, of course: catching fly
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balls, manufacturing microchips, delivering overnight packages.
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Medicine’s only distinction is that lives are lost in those slim
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margins.
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And so he went to work on finding that margin for Janelle. Eventually,
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he figured out that she had a new boyfriend. She had a new job, too, and
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was working nights. The boyfriend had his own apartment, and she was
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either there or at a friend’s house most of the time, so she rarely made
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it home to take her treatments. At school, new rules required her to go
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to the school nurse for each dose of medicine during the day. So she
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skipped going. “It’s such a pain,” she said. He learned that there were
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some medicines she took and some she didn’t. One she took because it was
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the only thing that she felt actually made a difference. She took her
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vitamins, too. (“Why your vitamins?” “Because they’re cool.”) The rest
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she ignored.
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Warwick proposed a deal. Janelle would go home for a breathing treatment
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every day after school, and get her best friend to hold her to it. She’d
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also keep key medications in her bag or her pocket at school and take
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them on her own. (“The nurse won’t let me.” “Don’t tell her,” he said,
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and deftly turned taking care of herself into an act of rebellion.) So
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far, Janelle was O.K. with this. But there was one other thing, he said:
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she’d have to come to the hospital for a few days of therapy to recover
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the lost ground. She stared at him.
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“Today?”
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“Yes, today.”
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“How about tomorrow?”
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“We’ve failed, Janelle,” he said. “It’s important to acknowledge when
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we’ve failed.”
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With that, she began to cry.
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Warwick’s combination of focus, aggressiveness, and inventiveness is
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what makes him extraordinary. He thinks hard about his patients, he
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pushes them, and he does not hesitate to improvise. Twenty years ago,
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while he was listening to a church choir and mulling over how he might
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examine his patients better, he came up with a new stethoscope—a
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stereo-stethoscope, he calls it. It has two bells dangling from it, and,
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because of a built-in sound delay, transmits lung sounds in stereo. He
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had an engineer make it for him. Listening to Janelle with the
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instrument, he put one bell on the right side of her chest and the other
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on her left side, and insisted that he could systematically localize how
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individual lobes of her lungs sounded.
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He invented a new cough. It wasn’t enough that his patients actively
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cough up their sputum. He wanted a deeper, better cough, and later, in
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his office, Warwick made another patient practice his cough. The patient
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stretched his arms upward, yawned, pinched his nose, bent down as far as
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he could, let the pressure build up, and then, straightening, blasted
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everything out. (“Again\!” Warwick encouraged him. “Harder\!”)
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He produced his most far-reaching invention almost two decades ago—a
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mechanized, chest-thumping vest for patients to wear. The chief
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difficulty for people with CF is sticking with the laborious daily
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regimen of care, particularly the manual chest therapy. It requires
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another person’s help. It requires conscientiousness, making sure to
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bang on each of the fourteen locations on a patient’s chest. And it
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requires consistency, doing this twice a day, every day, year after
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year. Warwick had become fascinated by studies showing that inflating
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and deflating a blood-pressure cuff around a dog’s chest could mobilize
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its lung secretions, and in the mid-nineteen-eighties he created what is
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now known as the Vest. It looks like a black flak jacket with two vacuum
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hoses coming out of the sides. These are hooked up to a compressor that
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shoots quick blasts of air in and out of the vest at high frequencies.
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(I talked to a patient while he had one of these on. He vibrated like a
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car on a back road.) Studies eventually showed that Warwick’s device was
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at least as effective as manual chest therapy, and was used far more
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consistently. Today, forty-five thousand patients with CF and other lung
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diseases use the technology.
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Like most medical clinics, the Minnesota Cystic Fibrosis Center has
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several physicians and many more staff members. Warwick established a
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weekly meeting to review everyone’s care for their patients, and he
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insists on a degree of uniformity that clinicians usually find
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intolerable. Some chafe. He can have, as one of the doctors put it,
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“somewhat of an absence of, um, collegial respect for different care
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plans.” And although he stepped down as director of the center in 1999,
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to let a protégé, Carlos Milla, take over, he remains its guiding
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spirit. He and his colleagues aren’t content if their patients’ lung
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function is eighty per cent of normal, or even ninety per cent. They aim
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for a hundred per cent—or better. Almost ten per cent of the children at
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his center get supplemental feedings through a latex tube surgically
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inserted into their stomachs, simply because, by Warwick’s standards,
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they were not gaining enough weight. There’s no published research
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showing that you need to do this. But not a single child or teen-ager at
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the center has died in years. Its oldest patient is now sixty-four.
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The buzzword for clinicians these days is “evidence-based practice”—good
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doctors are supposed to follow research findings rather than their own
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intuition or ad-hoc experimentation. Yet Warwick is almost contemptuous
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of established findings. National clinical guidelines for care are, he
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says, “a record of the past, and little more—they should have an
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expiration date.” I accompanied him as he visited another of his
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patients, Scott Pieper. When Pieper came to Fairview, at the age of
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thirty-two, he had lost at least eighty per cent of his lung capacity.
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He was too weak and short of breath to take a walk, let alone work, and
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he wasn’t expected to last a year. That was fourteen years ago.
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“Some days, I think, This is it—I’m not going to make it,” Pieper told
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me. “But other times I think, I’m going to make sixty, seventy, maybe
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more.” For the past several months, Warwick had Pieper trying a new
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idea—wearing his vest not only for two daily thirty-minute sessions
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but also while napping for two hours in the middle of the day. Falling
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asleep in that shuddering thing took some getting used to. But Pieper
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was soon able to take up bowling, his first regular activity in years.
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He joined a two-night-a-week league. He couldn’t go four games, and his
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score always dropped in the third game, but he’d worked his average up
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to 177. “Any ideas about what we could do so you could last for that
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extra game, Scott?” Warwick asked. Well, Pieper said, he’d noticed that
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in the cold—anything below fifty degrees—and when humidity was below
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fifty per cent, he did better. Warwick suggested doing an extra hour in
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the vest on warm or humid days and on every game day. Pieper said he’d
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try it.
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We are used to thinking that a doctor’s ability depends mainly on
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science and skill. The lesson from Minneapolis is that these may be the
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easiest parts of care. Even doctors with great knowledge and technical
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skill can have mediocre results; more nebulous factors like
|
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aggressiveness and consistency and ingenuity can matter enormously. In
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Cincinnati and in Minneapolis, the doctors are equally capable and well
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|
versed in the data on CF. But if Annie Page—who has had no breathing
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problems or major setbacks—were in Minneapolis she would almost
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certainly have had a feeding tube in her stomach and Warwick’s team
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hounding her to figure out ways to make her breathing even better than
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normal.
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Don Berwick believes that the subtleties of medical decision-making can
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be identified and learned. The lessons are hidden. But if we open the
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book on physicians’ results, the lessons will be exposed. And if we are
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genuinely curious about how the best achieve their results, he believes
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they will spread.
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The Cincinnati CF team has already begun tracking the nutrition and lung
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|
function of individual patients the way Warwick does, and is getting
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|
more aggressive in improving the results in these areas, too. Yet you
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|
have to wonder whether it is possible to replicate people like Warwick,
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|
|
with their intense drive and constant experimenting. In the two years
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|
since the Cystic Fibrosis Foundation began bringing together centers
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willing to share their data, certain patterns have begun to emerge,
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|
according to Bruce Marshall, the head of quality improvement for the
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foundation. All the centers appear to have made significant progress.
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None, however, have progressed more than centers like Fairview.
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“You look at the rates of improvement in different quartiles, and it’s
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the centers in the top quartile that are improving fastest,” Marshall
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says. “They are at risk of breaking away.” What the best may have, above
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all, is a capacity to learn and adapt—and to do so faster than everyone
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else.
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Once we acknowledge that, no matter how much we improve our average, the
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bell curve isn’t going away, we’re left with all sorts of questions.
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Will being in the bottom half be used against doctors in lawsuits? Will
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we be expected to tell our patients how we score? Will our patients
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leave us? Will those at the bottom be paid less than those at the top?
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The answer to all these questions is likely yes.
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Recently, there has been a lot of discussion, for example, about “paying
|
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|
for quality.” (No one ever says “docking for mediocrity,” but it amounts
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|
to the same thing.) Congress has discussed the idea in hearings.
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|
Insurers like Aetna and the Blue Cross-Blue Shield companies are
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|
introducing it across the country. Already, Medicare has decided not to
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|
pay surgeons for intestinal transplantation operations unless they
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|
achieve a predefined success rate. Not surprisingly, this makes doctors
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anxious. I recently sat in on a presentation of the concept to an
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|
audience of doctors. By the end, some in the crowd were practically
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shouting with indignation: We’re going to be paid according to our
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|
grades ? Who is doing the grading? For God’s sake, how?
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|
We in medicine are not the only ones being graded nowadays. Firemen,
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|
C.E.O.s, and salesmen are. Even teachers are being graded, and, in some
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|
places, being paid accordingly. Yet we all feel uneasy about being
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|
judged by such grades. They never seem to measure the right things. They
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|
don’t take into account circumstances beyond our control. They are
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|
misused; they are unfair. Still, the simple facts remain: there is a
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bell curve in all human activities, and the differences you measure
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usually matter.
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I asked Honor Page what she would do if, after all her efforts and the
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|
efforts of the doctors and nurses at Cincinnati Children’s Hospital to
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|
insure that “there was no place better in the world” to receive
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|
cystic-fibrosis care, their comparative performance still rated as
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resoundingly average.
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“I can’t believe that’s possible,” she told me. The staff have worked so
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hard, she said, that she could not imagine they would fail.
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After I pressed her, though, she told me, “I don’t think I’d settle for
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Cincinnati if it remains just average.” Then she thought about it some
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more. Would she really move Annie away from people who had been so
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|
devoted all these years, just because of the numbers? Well, maybe. But,
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at the same time, she wanted me to understand that their effort counted
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for more than she was able to express.
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I do not have to consider these matters for very long before I start
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thinking about where I would stand on a bell curve for the operations I
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do. I have chosen to specialize (in surgery for endocrine tumors), so I
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would hope that my statistics prove to be better than those of surgeons
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who only occasionally do the kind of surgery I do. But am I up in
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Warwickian territory? Do I have to answer this question?
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The hardest question for anyone who takes responsibility for what he or
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she does is, What if I turn out to be average? If we took all the
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surgeons at my level of experience, compared our results, and found that
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I am one of the worst, the answer would be easy: I’d turn in my scalpel.
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|
But what if I were a C? Working as I do in a city that’s mobbed with
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|
surgeons, how could I justify putting patients under the knife? I could
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|
tell myself, Someone’s got to be average. If the bell curve is a fact,
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|
then so is the reality that most doctors are going to be average. There
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|
is no shame in being one of them, right?
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Except, of course, there is. Somehow, what troubles people isn’t so much
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being average as settling for it. Everyone knows that averageness is,
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|
|
for most of us, our fate. And in certain matters—looks, money, tennis—we
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|
|
would do well to accept this. But in your surgeon, your child’s
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|
pediatrician, your police department, your local high school? When the
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|
stakes are our lives and the lives of our children, we expect
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|
averageness to be resisted. And so I push to make myself the best. If
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I’m not the best already, I believe wholeheartedly that I will be. And
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you expect that of me, too. Whatever the next round of numbers may say.
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♦
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