One of the more frustrating things about practitioners who promote unsafe and scientifically discredited medical practices is their tendency to change their message for different audiences. One day they’ll tell you that they espouse only evidence-based practices and the next they’ll be promoting snake oil. This double talk is hard to combat, since to disprove them one would essentially have to provide a video of their contradictory remarks.
One day I participated in a series of business meetings with a CAM practitioner in attendance (he was an MD who graduated from UCSF). During one meeting he boldly proclaimed his support of scientifically rigorous research, and praised the Cochrane Collaborative’s efforts to provide systematic reviews of the evidence (or lack thereof) for various practices.
Several hours later we were sitting together in another meeting in which I objected to the publication of a consumer article that would assist parents of children with autism in finding a DAN! practitioner who could provide chelation therapy to their children. I explained that there was no evidence for the efficacy of such treatments, and plenty of evidence for their harm (including the death of at least one child that I’d read about in the news). I suggested that an article describing these dangers might be in order, but that an article encouraging chelation use for autism was simply unethical and I would not allow it to be published.
Instead of agreeing with me, the CAM MD suggested that I was being “narrow” and that I should allow consumers to “explore all their options.” I was stunned. This was the same person who had just said that he fully supported scientific inquiry. So I asked him how he could say that he supported evidence-based medicine, and then turn around and ignore evidence at will – even at the peril of human life.
His response dumbfounded me:
“I am just as comfortable practicing within an evidence-based framework as I am outside it.”
Which sounded a lot to me like, “I’m just as comfortable lying as I am telling the truth.”
Even more flabbergasting was the perception of the others in our meetings. Having no medical training or science background, they perceived our disagreements as “two nice doctors who don’t get along.” Of course, Dr. CAM fanned this perception and encouraged them to see me as “paternalistic” while he was “open-minded.” All the while I was trying to protect parents from harming their children based on information that might seem credible in the context of a reputable online health site.
Of course, the old adage “perception is nine tenths of reality” was no clearer to me than during this day of meetings. In the face of what most healthcare professionals would see as an outright violation of Dr. CAM’s Hippocratic oath, to the untrained eye this was a mere disagreement between doctors. One seemed pretty upset and intense (me) and the other seemed cool and breezy (CAM). Which is the more appealing demeanor?
If a hospitalized patient’s life is in danger, I’d like to think that their doctor would be intensely interested in intervening. A shruggie attitude in that context would rightly be perceived as uncaring and irresponsible. However, change the setting from hospital to decision-support tool, and suddenly the acuity is lost on the audience. Unfortunately, the acuity remains – as patients use the Internet as a resource for “informed decision-making” all the time.
I’m not sure what it will take to impress upon healthcare professionals and patients alike the importance of reliable information online. The problem is that the damage is harder to quantify and rarely reported. Who will measure the effects of bad information on health? Who can know which false advice is used versus ignored?
A recent Pew Foundation study suggests that 70% of those who seek health information online say that it influences how they treat a condition. About 18% say they use the information to diagnose or treat a condition without a doctor’s consultation. An interesting website (created by a concerned patient named Tim Farley) actually aggregates a large number of journal article reports, news stories, and personal anecdotes related to harm experienced by patients who were either misinformed or chose alternative medicine therapies to their detriment. The stories are both tragic and eye-opening.
Tracing patient choices back to the online site or page that gave them the idea in the first place may be hard to do. But I think that healthcare professionals owe it to patients to protect them from obviously harmful advice when it is in their power to do so. I don’t agree with Dr. CAM that such an approach is paternalistic. I think it’s part of being a caring professional and a good physician.