[Pophealth] fighting misdiagnosis: should doctors go down with their planes?

[Stephen Bezruchka]

Amazing how an article steps around the killing fields.  There are plenty 
of opportunities to get the word out concerning one of the leading causes 
of death.  STephen

NYT February 22, 2006 David Leonhardt Why Doctors So Often Get It Wrong 
ATLANTA
ON a weekend day a few years ago, the parents of a 4-year-old boy from 
rural Georgia brought him to a children's hospital here in north Atlanta. 
The family had already been through a lot. Their son had been sick for 
months, with fevers that just would not go away.
The doctors on weekend duty ordered blood tests, which showed that the boy 
had leukemia. There were a few things about his condition that didn't add 
up, like the light brown spots on the skin, but the doctors still 
scheduled a strong course of chemotherapy to start on Monday afternoon. 
Time, after all, was their enemy.
John Bergsagel, a soft-spoken senior oncologist, remembers arriving at the 
hospital on Monday morning and having a pile of other cases to get 
through. He was also bothered by the skin spots, but he agreed that the 
blood test was clear enough. The boy had leukemia.
"Once you start down one of these clinical pathways," Dr. Bergsagel said, 
"it's very hard to step off."
What the doctors didn't know was that the boy had a rare form of the 
disease that chemotherapy does not cure. It makes the symptoms go away for 
a month or so, but then they return. Worst of all, each round of 
chemotherapy would bring a serious risk of death, since he was already so 
weak.
With all the tools available to modern medicine 
â
€
” the blood tests and M.R.I.'s and endoscopes 
â
€
” you might think that misdiagnosis has become a rare thing. But you would 
be wrong. Studies of autopsies have shown that doctors seriously 
misdiagnose fatal illnesses about 20 percent of the time. So millions of 
patients are being treated for the wrong disease.
As shocking as that is, the more astonishing fact may be that the rate has 
not really changed since the 1930's. "No improvement!" was how an article 
in the normally exclamation-free Journal of the American Medical 
Association summarized the situation.
This is the richest country in the world 
â
€
” one where one-seventh of the economy is devoted to health care 
ۉ
” and yet misdiagnosis is killing thousands of Americans every year.
How can this be happening? And how is it not a source of national outrage?
A BIG part of the answer is that all of the other medical progress we have 
made has distracted us from the misdiagnosis crisis.
Any number of diseases that were death sentences just 50 years ago 
â
€
” like childhood leukemia 
â
€
” are often manageable today, thanks to good work done by people like Dr. 
Bergsagel. The brightly painted pediatric clinic where he practices is a 
pretty inspiring place on most days, because it's just a detour on the way 
toward a long, healthy life for four out of five leukemia patients who 
come here.
But we still could be doing a lot better. Under the current medical 
system, doctors, nurses, lab technicians and hospital executives are not 
actually paid to come up with the right diagnosis. They are paid to 
perform tests and to do surgery and to dispense drugs.
There is no bonus for curing someone and no penalty for failing, except 
when the mistakes rise to the level of malpractice. So even though doctors 
can have the best intentions, they have little economic incentive to spend 
time double-checking their instincts, and hospitals have little incentive 
to give them the tools to do so.
"You get what you pay for," Mark B. McClellan, who runs Medicare and 
Medicaid, told me. "And we ought to be paying for better quality."
There are some bits of good news here. Dr. McClellan has set up small 
pay-for-performance programs in Medicare, and a few insurers are also 
experimenting. But it isn't nearly a big enough push. We just are not 
using the power of incentives to save lives. For a politician looking to 
make the often-bloodless debate over health care come alive, this is a 
huge opportunity.
Joseph Britto, a former intensive-care doctor, likes to compare medicine's 
attitude toward mistakes with the airline industry's. At the insistence of 
pilots, who have the ultimate incentive not to mess up, airlines have 
studied their errors and nearly eliminated crashes.
"Unlike pilots," Dr. Britto said, "doctors don't go down with their 
planes."
Dr. Britto was working at a London hospital in 1999 when doctors diagnosed 
chicken pox in a little girl named Isabel Maude. Only when her organs 
began shutting down did her doctors realize that she had a potentially 
fatal flesh-eating virus. Isabel's father, Jason, was so shaken by the 
experience that he quit his finance job and founded a company 
â
€
” named after his daughter, who is a healthy 10-year-old today 
ۉ
” to fight misdiagnosis.
The company sells software that allows doctors to type in a patient's 
symptoms and, in response, spits out a list of possible causes. It does 
not replace doctors, but makes sure they can consider some unobvious 
possibilities that they may not have seen since medical school. Dr. Britto 
is a top executive.
Not long after the founding of Isabel Healthcare, Dr. Bergsagel in Atlanta 
stumbled across an article about it and asked to be one of the beta 
testers. So on that Monday morning, when he couldn't get the 
inconsistencies in the boy's case out of his mind, he sat down at a 
computer in a little white room, behind a nurse's station, and entered the 
symptoms.
Near the top of Isabel's list was a rare form of leukemia that Dr. 
Bergsagel had never seen before 
â
€
” and that often causes brown skin spots. "It was very much a Eureka 
moment," he said.
There is no happy ending to the story, because this leukemia has much 
longer odds than more common kinds. But the boy was spared the misery of 
pointless chemotherapy and was instead given the only chance he had, a 
bone marrow transplant. He lived another year and a half.
Today, Dr. Bergsagel uses Isabel a few times a month. The company 
continues to give him free access. But his colleagues at Children's 
Healthcare of Atlanta can't use it. The hospital has not bought the 
service, which costs $80,000 a year for a typical hospital (and $750 for 
an individual doctor).
Clearly, misdiagnosis costs far more than that. But in the current health 
care system, hospitals have no way to recoup money they spend on programs 
like Isabel.
We patients, on the other hand, foot the bill for all those wasted 
procedures and pointless drugs. So we keep getting them. Does that make 
any sense?
E-mail: leonhardt at nytimes.com