The medicine man behind the curtain

Over the past year or so I’ve journeyed with my partner through a significant health crisis. It began with what appeared to be an allergic reaction to an antibiotic (Flagyl) – when her breathing was affected I took her straight to an emergency room. There she began vomiting, was unable to walk on her own, and was having trouble controlling her limbs. The attending ER doctor called a “stroke alert,” and I was impressed with how the medical team ran her through a complete diagnostic screening, complete with CAT scan to check for active bleeding on the brain. Fortunately, she was cleared – no sign of stroke.

So now what do we do? The ER doc was puzzled. He focused on high blood pressure and said it could be some sort of “hypertensive encephalopathy,” but was otherwise stymied. They admitted her to a neurology unit for observation, and that turned out to be a critical fork in the road (since they could have admitted her to, I suppose, a ward focusing on allergies and immune response). The attending neurologist said she could be suffering from a very rare neurological disorder, but was not sure. The following day, his replacement (while the attending was away at a conference) looked at my partner’s chart, looked at her and said, effectively, “I don’t know why you’re here – just get up and get out of bed. This is all in your head.” He meant that, of course, in a psychiatric sense. My partner was sent home frightened, with no treatment plan and no significant follow-up planned with a doctor.

I’ll fast forward through the next six months, else this post will become a novella. A repeat ER episode a month after the first, this time at a different hospital. Once again physicians argued amongst themselves and with my partner over diagnoses, and once again a psychiatric “diagnosis of exclusion” was assigned (i.e., if we can’t find a definitive set of measurable symptoms, it must be psychological). Fortunately one senior physician suggested a particular medication known for its anti-histamine properties, and that started us down a road of significant recovery.

For the past year I have watched no fewer than 8 physicians of varying specialties (internal medicine, immunology, psychiatry, endocrinology, in addition to several neurologists) try to figure out what’s wrong. What struck me first was how varied they were in their respect and attentiveness to the patient. Some clearly were ready to dismiss the “hysterical woman” in spite of her calm, rational presentation of her history. Others were very respectful and kind. Physicians also differed in their comfort with the unknown – again, some seemed to want to reach a decisive diagnosis rather than say “I don’t know,” while others were more comfortable sitting with an open mystery and acknowledging as much.

In education we often hear calls to “professionalize” teaching by having it function more like medicine (at some point I’ll deconstruct the whole “education = medicine” argument in depth – fodder for a future post). In the “reformer’s” idealized view, doctors make rational treatment decisions based on the best science, not snap judgments based on the latest diagnostic fads, stereotypes about patients, or fear of looking incompetent. Hmmm.  I beg to differ. Doctors are professional humans operating in resource-constrained environments, taking care of people with complex needs. Just like teachers. And both are susceptible to getting it wrong sometimes.

Just as I’ve seen what a difference it makes for students to have parents who are able to advocate on their behalf with a teacher, I have to wonder what becomes of patients who do not have graduate degrees, who do not feel entitled to ask a physician to elaborate on their reasoning or on why other diagnostic avenues may be excluded.  In both education and medicine having personal and social capital affects the outcome far more strongly than I would like to believe.

Tomorrow is election day in the U.S.  Be sure to get out and vote!

(Photo: an EEG trace. Lots and lots of data!)

Data!

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