Choosing a body mechanic...

Back in December of 2004, I realized if my brother, Nathan, had been treated by the Minnesota Cystic Fibrosis Center in Minneapolis, he'd still be living. This realization came after reading an article (link requires subscription) in the New Yorker by a physician named Atul Gawande titled "The Bell Curve: What happens when patients find out how good their doctors really are?"

Nathan had been born with the genetic disease cystic fibrosis. Operated on at birth by the world's foremost pediatric surgeon, the late C. Everett (Chick) Koop, Nathan's survival into his late thirties without being on a maintenance antibiotic for his lungs was unusual and we all were thankful to God that he'd lived this long. These were new times for CF patients and we considered Nathan a groundbreaker.

Then Nathan was diagnosed with cancer and, a year or so later, died at forty years of age.

Reading Gawande's piece a couple years after Nathan's death... I learned there were, at the time, 117 centers specializing in the treatment of CF around the U.S. Gawande writes:

In 2003, life expectancy with CF had risen to thirty-three years nationally, but at the best center it was more than forty-seven. Experts have become as leery of life-expectancy calculations as they are of hospital death rates, but other measures tell the same story. For example, at the median center, lung function for patients with CF—the best predictor of survival—is about three-quarters of what it is for people without CF. At the top centers, the average lung function of patients is indistinguishable from that of children who do not have CF.

What makes the situation especially puzzling is that our system for CF care is far more sophisticated than that for most diseases. The hundred and seventeen CF centers across the country are all ultra-specialized, undergo a rigorous certification process, and have lots of experience in caring for people with CF. They all follow the same detailed guidelines for CF treatment. They all participate in research trials to figure out new and better treatments. You would think, therefore, that their results would be much the same. Yet the differences are enormous. Patients have not known this.

Nathan died at 40 when the average life expectancy of CF patients treated at the best CF centers was closing in on 50. There's little doubt that, had Nathan been under the care of the Minnesota Cystic Fibrosis Center in Minneapolis, he would have lived at least into his fifties. (This is not a blind assertion; Nathan died of a complication of CF that should have been anticipated by those supervising his treatment.) Why didn't Nathan know how poor his CF center was relative to the Minneapolis CF Center? Who was hiding the stats that allow patients to make informed decisions concerning their care?

Again, Gawande writes:

It used to be assumed that differences among hospitals or doctors in a particular specialty were generally insignificant. If you plotted a graph showing the results of all the centers treating cystic fibrosis—or any other disease, for that matter—people expected that the curve would look something like a shark fin, with most places clustered around the very best outcomes. But the evidence has begun to indicate otherwise. What you tend to find is a bell curve: a handful of teams with disturbingly poor outcomes for their patients, a handful with remarkably good results, and a great undistinguished middle.

In ordinary hernia operations, the chances of recurrence are one in ten for surgeons at the unhappy end of the spectrum, one in twenty for those in the middle majority, and under one in five hundred for a handful. A Scottish study of patients with treatable colon cancer found that the ten-year survival rate ranged from a high of sixty-three per cent to a low of twenty per cent, depending on the surgeon. For heartbypass patients, even at hospitals with a good volume of experience, risk-adjusted death rates in New York vary from five per cent to under one per cent—and only a very few hospitals are down near the one-per-cent mortality rate.

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

Through the years of ministry, I've often defended doctors to patients frustrated by bad results or mistakes their medical professionals have made. I explain to them that doctors are much like car mechanics, except they work on our bodies instead of our cars. We tell them we're hearing a knock somewhere, a rattle or clank somewhere else, and they get the car in the garage and, inevitably, bring it back out telling us they hear nothing at all. We drive the car into the garage after listening to the C-V joint clicking when we turn left. We've been listening to that click for a year now, knowing we're going to have to spring for a C-V joint or a new axle (whichever is cheaper), but now when we've resigned ourselves, set up an appointment, and have someone there at the garage to take us to work, there's no clicking. We go out in the car with the mechanic and find a large parking lot where we can drive in a continuous circle counter-clockwise, but not a single click. It can drive a man crazy!

Things go wrong between us and our car mechanics all the time and we take it in stride, sometimes even having the grace to laugh and shrug our shoulders, saying "C'est la vie."

But when things go wrong between us and our doctor, there's no laughter or shrugging of our shoulders or "C'est la vie." Oh no. When men fail in their work on our bodies, it's anger, bitterness, and litigation.

The analogy isn't perfect. One doctor I tried it on laughed and said he'd heard the same from a biker patient who likened him to his motorcycle mechanic, and he said he'd responded by telling the biker that one difference was his motorcycle mechanic didn't try to replace his clutch with the engine running. Touché!

Still, it would be good for everyone to realize that we are born to die and often our deaths will be helped along by poor body mechanics who are lazy, clumsy, or stupid. I used to pull medical journals out of the trash at the Woodbridge Post Office here in Bloomington and take them home to read them. The names of the docs who threw out their journals without reading them were there on the labels on the covers, for anyone to read. Which is to say there are many, many ways of finding out who are the good and who are the bad docs. You can start by checking out which docs toss their journals in the trash unopened.

But the larger truth is that the medical profession should be held accountable for results, and here's an excerpt from an article son Joseph passed on that brings some hope that it may actually begin to happen.

Dr. Birkmeyer and his co-authors then reviewed the records of the 20 surgeons’ post-operative complications and compared them with their rankings. Not surprisingly, surgeons in the bottom quartile took 40 percent more time to complete the same operation and had higher mortality rates than top-ranked surgeons. But their patients also ran a significantly higher chance of developing a whole host of complications, including wound infections, pneumonia, bleeding and thrombophlebitis, and required re-operation and readmission to the hospital after discharge more often than patients of surgeons whose rankings were in the top quartile.

The study is the first to reliably measure operative skills in practicing surgeons and correlate those measurements with patient outcomes. “We now have a scientific way to evaluate a practicing surgeon’s skill that is as reliable as about anything we measure in health care in terms of quality,” Dr. Birkmeyer observed.

I'm pleased we may soon be able to choose our surgeons (and CF center) based on hard stats showing us who are the good body mechanics and who the bad ones. But I'm looking for the day when someone devises and administers an instrument that will show who are the good and who the lazy and greedy and stupid shepherds of God's flock; who doesn't and who does have blood on his hands.

Everyone believes there is such an objective test. Just note how constantly we read how many (single Asian women) attend Tim Keller's church and how many souls Mark Driscoll "is running" in worship each Sunday. But of course, NASCAR and the NFL run many more souls each Sunday, and the Gospel Coalition hasn't yet invited TO or the Busch brothers to bring a message at their national confab.

Tim Bayly

Tim serves Clearnote Church, Bloomington, Indiana. He and Mary Lee have five children and fifteen grandchildren.

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Comments

And, prithee, where does one find such statistical data? Who keeps (or gathers) the stats?

It's fallen to me to be the family "patient advocate" for several family members -- some facing catastrophic disease (such as Nathan's life-long CF adventures), others at the end of life. It's confirmed for me that this side of the resurrection, the normal state of the human body is "dead," and before that "dying." 

It's also left me profoundly skeptical and distrusting of the medical industry generally, especially in its institutional aspects (clinics, hospitals, research facilities); and, I say this while blessed with a general practitioner who I've several times trusted with my life (what remained of it, of course) and am grateful he was there.

Still, ... consuming medical products and services has, in my experience, no resemblance at all to the consumption of automotive products and services. The consumers are mostly left to their intuition, to guesswork, and (from a merely human perspective) to blind chance. Of all consumers, medical consumers are the most ignorant of facts which impact their happiness.

I just finished a pulmonary medicine fellowship. A friend of a friend had a child born with CF and asked (through my friend) for recommendations. Here it was: MOVE SOMEWHERE WITH A CF CENTER!!!!

Sometimes you need a good doctor to find out the best place to receive the health care you need and advocate on your behalf.

Several years ago, one of my sisters experienced severe headaches and neck pain among other symptoms. Her primary care doctor referred to a neurosurgeon in her small northwestern Wisconsin city. This doc diagnosed her with a congenital malformation (Arnold-Chiari malformation) that had progressed over time and now required brain surgery. The neurosurgeon realized that the best medical center in the Midwest for this surgery was the Mayo Clinic in Rochester, Minnesota. Because Mayo Clinic was out of state and out-of-network, her health insurance originally said no. They allowed her to have the surgery in two excellent university medical centers in southern Wisconsin (one in-network and one out-of-network), but not at Mayo, 

Her local neurosurgeon went to bat for her. He provided hard evidence with her insurance company that the Mayo Clinic was the place that had the neurosurgeons with the most experience with this surgery and the the best surgical outcomes as well. 

The insurance company followed her neurosurgeon's recommendation and allowed her surgery to take place at the Mayo Clinic. She had a successful surgery and made a full recovery.

P.S. I've also heard surgical nurses usually know which surgeons know what they are doing and which ones are not since they are in the OR the whole time.

I am curious, though you find the CF center that you want to visit, if your new Obamacare policy will allow that. Consider this: most of these policies don't have out of network coverage, so that the CF center would need to be in network. Many of the best medical centers around the country have chosen to not participate in Obamacare policies.

Um, do I take it that you are critical of pastors who measure everything by numbers, or am I missing something here? #daftladdiequestion

In any event, I am not sure that I would bracket Tim Keller with Mark Driscoll; Driscoll has his bugs, certainly at a personal level, but he's not Keller - and if he (Driscoll) is getting single men to church, and putting before them God's call to marriage, he's doing very well indeed.

Since others have mentioned Mayo, one of the key distinctives at Mayo is that they've got the statistical infrastructure in place to figure out which techniques and personnel are really good--and then they teach the laggards what they're doing wrong.  It's taking the old apprenticeship system one better, really.

And if you have to use the "Health exchanges" under the Health Insurance Deform Act to get coverage, better get Blue Cross if you want to come to Rochester.  No other Obamacare exchange member has done what it takes to be accepted at Mayo--and keep in mind that Mayo actually does a lot of procedures for LESS than the national average.  They're not the high cost provider.

(but the health insurance exchanges ARE that badly managed)

The American Society for Quality, an organization of which I'm a member, loves Mayo. Lots of good work going on in that regard.

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