Seth's Blog

I decided to read this book review because of a brief description (“A father describes, and rages at, the loss of his teenage son.) in an email. Then I found this:

Weber’s story becomes more spirited and urgent when Damon’s health begins to fail more seriously, and his father is forced to locate his true enemy: the received wisdom and arrogance of the American medical establishment.

Weber père . . .  admits he doesn’t trust “any single voice on Damon’s illness.” And he’s wise not to, as he discovers in short order that health care for his son is first and foremost a business, and that surgeons frequently talk out of their hats.

Heart transplants represent big money for hospitals: at half a million dollars each, 20 pediatric transplant operations a year make a significant contribution to the finances of New York-Presbyterian ­Hospital/Columbia University Medical Center, where Damon’s surgery is eventually performed. Hospitals compete to attract patients (every transplant center Weber speaks with wants to perform his son’s operation) and stringently guard their surgical outcome data, as Weber discovers when he tries to find out if the blithe assurances of the Columbia transplant team are scientifically valid. He quickly realizes “each hospital is a fiefdom.”

Worse still, the medical barons who run the fiefs care as much [i.e., as little] for protocol as they do for patients. Over Christmas of 2004, Damon is casually “listed” as a potential heart recipient — meaning he has to be ready to receive a new heart at a moment’s notice — without his father’s knowledge. His doctors then disappear for a week and more.

Before Weber can truly blow his stack, he discovers Damon’s doctors have also misclassified his son’s transplant status as less urgent than it is. Dad bulls [sic] them into fixing the problem, and 11 days later, a heart is found for Damon. The transplant in turn initiates a tragic cascade of doctor errors so egregious that Weber eventually sues both the medical director of pediatric heart transplants at New York-Presbyterian Columbia hospital and the hospital itself for malpractice. (Three years into the lawsuit, the medical director claimed Damon’s post-op records couldn’t be located.) All this happens at one of the country’s best heart transplant centers.

“Passively relying on the medical establishment and trusting them to manage my son’s care in his best interest is not . . . a luxury I have allowed myself,” Weber writes, with good reason.

Maybe I should start a series called “The Culture of Surgeons”. Entry 1: Eileen Consorti, a Berkeley surgeon who told me I should have surgery for a hernia I could not detect. Entry 2: Martin  Burton, an Oxford ear nose and throat surgeon whose Cochran Review about the pros and cons of tonsillectomy failed to consider that tonsils are part of the immune system.

The blog Science-Based Medicine ran a long critical comment about my recent Boing Boing piece (“Tonsillectomy Confidential: doctors ignore polio epidemics and high school biology”) followed by a back-and-forth (my reply, their reply to my reply, on and on) in the comments.

The exchange had three curious features.

1. In Tonsillectomy Confidential, I described how Rachael critically evaluated what a naturopath told her:

Rachael and her son went to see a naturopath that a neighbor had recommended. The naturopath was especially knowledgeable about nutrition and supplements. After an hour interview, she suggested Vitamin D3 (5000 IU/day), a multivitamin, Vitamin C (500 mg/day), and powdered larch bark. Rachael searched for research about these recommendations. She found many studies that suggested Vitamin D might help. Her son is a pale redhead and used sunblock a lot. It was easy to believe he wasn’t getting enough Vitamin D. Because Vitamin D won’t work properly without other vitamins (called co-factors), a multivitamin was a good idea [Rachael discovered during her research]. Rachael found studies that implied that a multivitamin was very unlikely to be very harmful. She found few relevant studies about Vitamin C. Maybe extreme claims about its benefits had scared off researchers — “Linus Pauling burned that bridge,” said Rachael. But she took the Vitamin C recommendation seriously because the naturopath had made other reasonable recommendations, the recommended dose was not large, Vitamin C is easily excreted in urine (in contrast to building up in the body), and Rachael had never heard of anyone having trouble at that dose. The naturopath had said that larch bark had reduced ear infections in children with chronic ear infections. A little bit of theory supported this, Rachael found, but overall the larch-bark research was “dodgy,” she said.

This was described by the Science-Based Medicine critic (Steven Novella) as “blatantly not evidence-based”.

2. In my first reply to the criticism, I wrote:

In other words, there is some evidence supporting the value of larch bark (“early laboratory evidence”) and some evidence (“a more recent study in mice”) not supporting the value of larch bark. Given this, to say “available scientific evidence does not support claims . . .” is false. An accurate statement is that some evidence does and some evidence doesn’t.

This got the following reply from a second critic (David Gorski):

No, Seth. Note two words Steve used, “in humans.” Steve was quite correct. If there is only a preliminary animal study, even if positive, that does not support the efficacy of larch bark in humans.

Apparently Gorski thinks animals (e.g., rats) and humans share no DNA. A few sentences later, contradicting himself, he notes that animal studies are used as screening tests.

3. Finally there was this, from Steven Novella:

It is fine to search for information yourself, and no one here is advocating “blind trust” in anyone. We are all activist skeptics. But it is folly to substitute one’s own opinion for that of experts who have spent years mastering a subject.

What a lovely motto for this blog: “It is folly to substitute one’s own opinion for that of experts who have spent years mastering the subject.” And, after all that study, think animals and humans share no DNA.

I wrote a piece for Boing Boing about tonsillectomies that has just been posted. It stemmed from a comment on this blog by a woman named Rachael. A doctor said her son should have a tonsillectomy. When Rachael did her own research, however, it seemed to her that the risks outweighed the benefits. I looked further into tonsillectomies and found that the risks were routinely greatly understated, even by advocates of evidence-based medicine.

More Here is a page on a doctor-run website called MedicineNet that grossly understates the risks of tonsillectomies. Compare their list of possible bad effects to mine.

• Bruce Handy (who wrote for Spy) on Newsweek. “The second biggest problem is the way each issue begins with a miles-long slog of columns by A-list writers eager to champion the incontrovertible and rehash the already thoroughly hashed. . . . Niall Ferguson has discovered that, thanks to technology, “the human race is interconnected as never before.””
• The Willat Effect in Venice, CA: side-by-side coffee comparisons at Intelligensia .
• Why is the headline 28 Unexpected TV Ratings Facts more attractive than Unexpected TV Ratings Facts?
• Engaging interview with Julia Schopick, creator of Honest Medicine. “After they [his surgeons] were done with him . . . “

In yesterday’s post I described how searching the medical literature helped me avoid a dangerous surgery with no obvious benefit. The surgeon I consulted, who recommended the surgery, said that published evidence backed her up. I could not find that evidence, however. Others found evidence that contradicted her recommendation.

Among the comments on that post were similar stories: Searching/reading the medical literature had been helpful. Learning what had happened (in research studies) was better than relying on an expert (a doctor). Here is an example:

A little over two years ago, I was “depressed”. My psychiatrist wanted to prescribe an SNRI [serotonin-norepinephrine reuptake inhibitor]. I related, once again, my poor experience with an SSRI and asked for evidence that an SNRI would be any more effective. He said there was evidence that SSRIs [selective serotonin reuptake inhibitors] worked. I pointed out the 2004 meta-analysis that showed no meaningful difference between SSRIs and placebos. Then I asked whether there was any better evidence for SNRIs. Since he wasn’t able to provide any, I told him that since we know that extremely low Vitamin D blood levels, poor diet, no exercise, and no social life can cause depression (all things I had at the time), I’ll try fixing those things first and then resort to drugs if that fails. It did not fail and I quit seeing him.

None of the stories in the comments described the opposite outcome: Knowing the data made things worse.

Are there exceptions? Is it always helpful (or at least not harmful) to know what happened (i.e., know research outcomes)? Has anyone reading this had an experience where knowing health research data was harmful?