Health Through Knowledge

The Serano Group

Wednesday, May 04, 2011

Maureen Dowd Is Going To Talk To Her Doctor

There are hard things to talk about. Then, there are really hard things to talk about.

On April 12, 2011, Maureen Dowd wrote about her brother who died a few years ago from what might have been  a hospital-acquired infection. She reflects on how hard it is to confront another adult who is doing something reckless, or just plain wrong, especially when they are a professional. It is particularly hard when that professional is a doctor. She quotes Elizabeth Cohen:

“There are all sorts of reasons we default to being quiet,” she said. “It is general etiquette not to correct another adult, especially when this is their profession. But when the consequences are so grave, you have to summon up your courage.”

Dowd talks mostly about getting doctors to wash their hands, not exactly a controversial or complex medical issue. But, if people are so reluctant to confront a doctor about something so simple and obvious, just how will the patient-doctor encounter go for a complex and less obvious subject? And, how much will the sick or injured pay if they don’t?

With more difficult medical subjects, we usually get the mysterious, technical, definitive sounding language doctors use. It convinces patients that, well, this medical stuff is just too much for regular people to understand. To cut right to a fundamental problem, we have the absolute, legal monopoly that medical doctors have worked to establish for the last one-hundred years. Medical societies regularly campaigned to get doctors elected to state legislatures in the 1880s to write laws to drive out the competition. Their efforts continue through closed state boards. They do this either because they are certain, absolutely certain, that other practitioners are harming patients and they needed sole responsibility for our health—or possibly, MDs want more money and no competition from others who could demonstrate the MDs’ deficiencies. Take your pick.


This could be interpreted as terribly cynical, but then, everyone has their own medical story. Dowd certainly has hers. Whenever I tell, or hear someone else tell, of a medical problem that was left untreated for years because a doctor, or a series of doctors, clung to their medical school diagnosis rather than probe, think, and treat logically, some listener usually chimes in with something like, “Certainly, no doctor is going to send a patient home sick or harm them! They do the best they can!”. But then, a few seconds later comes their own story. It usually goes like this—a neighbor went in for routine orthopedic surgery and got a horrible infection. Or, someone’s foot was broken and hurt like hell for a year because the doctor didn’t order an MRI (probably because his group gets compensated more by the insurance company for ordering fewer and cheaper tests). Or, someone went to the emergency room with severe abdominal pain and they got a good dose of narcotics that didn’t do anything except clear the ER doc of immediate responsibility and get the patient out the door. (I have heard each of these stories, directly from the person affected.)

Because we are a nonprofit looking at ignored and under-treated infectious diseases, the stories we often hear involve Lyme disease, more correctly called Lyme borreliosis.  I used to say Lyme borreliosis is a disease with the symptoms of syphilis, treatments like cancer’s, and the politics of AIDS. But, the last few years, I have changed this message, particularly the political part. Lyme politics often seems worse than AIDS politics. As one example, doctors are frequently sanctioned by state medical boards for testing too often for Lyme borreliosis. I have yet to hear of a doctor losing his license for ordering too many HIV tests.

Lyme borreliosis has a long and complex history, medical and political, but don’t even start down the road of saying we need to step back and rely solely on science. Particularly in medicine, and especially with borreliosis, science is often just a tool used by commercial and political forces for pushing an agenda. I am all for science that helps us understand our world, but science used to manipulate society for political power and corporate profit is despicable. Unfortunately, that is about all the science we are getting for borreliosis.

The other big problem is how the press reports on Lyme disease. Presenting it as a war between fractious doctor groups fits the current donnybrook reporting model, but does little to educate or inform. And, when the press, and readers, assess the accuracy of an opinion by the celebrity or position of the speaker rather than substance, we all lose, except maybe for the medical politicians working to distort the picture.

Like Dowd, people do have their stories. With Lyme borreliosis, the story is distressingly repetitive: suddenly got sick; went to the doctor; told they were crazy or lazy with nothing really wrong; then, diagnosed with MS, ME/CFS, lupus, or fibromyalgia;  became sicker and sicker;  saw more and more doctors;  finally stumbled upon someone who knew about Lyme borreliosis and associated infections; got treated; and, depending on how long the disease had been neglected and how good the treating doctor was, got better to varying degrees.

I have been asked to write more about some of the specifics of Lyme borreliosis by the Lyme Disease Awareness group here at dKos. We need to remember that specific diseases are but a single manifestation of the disaster of medical care in the U.S. We need a better discussion of complex medical issues than I have seen lately, too.

Good for Maureen Dowd, from her New York Times bully pulpit, for suggesting we need to be more assertive with our doctors. Now the challenge is to shed light on more complicated issues like Lyme borreliosis, a difficult systemic infection like syphilis, hard to treat and hard to understand. Citizens need to ask the right things and assert the obvious at the doctor’s office. They need to report what they experience there, too. Our online world lets us do it. It is a good place to start.

(Cross-posted on Daily Kos.)

Posted by Joel Spinhirne
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