Thursday, March 31, 2011

Felicia Chow, Shaoguan, Guangdong Province, China

March 2, 2011

Shaoguan, Guangdong Province, China

Medicine can be emotionally draining and neurology, even in the most developed country, is particularly heartbreaking at times.  In my time in Shaoguan, a city in the poor, rural northern region of Guangdong province, neurology seemed still more depressing.  One of the hospitals I visited in Shaoguan, the largest in the city, felt more like a factory than any of the previous hospitals I’d been to in Guangzhou, with over 2000 beds, of which nearly 200 were dedicated to patients with neurologic diseases.  The equivalent of the attending typically sees new admissions while old patients, many of whom stay for weeks at a time, are seen typically no more than once a week.  With that many patients, everyone gets short shrift despite the best intentions. 

On the second day of my visit, I watched as a husband and son pushed a patient of 47 years, dressed in pajamas with the recognizable blank stare of advanced dementia, into the admitting area.  She had the classic “marche a petit pas,” barely lifting her feet off the floor as she shuffled in tiny steps.  I kept looking around for the wheelchair that they had left at the doorway, but of course there was none.  I cannot imagine how long it must have taken them to walk her this way from their home. 

According to the team of physicians I was observing, the patient’s family brought her religiously to clinic every 1 to 2 months, each time asking what could be done.  When I met them, the son was clutching images from a recent brain MRI for which they had raised enough money.  Looking at her—mute, rigid, expressionless face and hands tightly grasping mine—I didn’t need the MRI to tell me that she had end-stage dementia, her frontal lobes slivers of cortex with symmetric subcortical white matter changes.  I tried to get a sense of what testing had been done in the three years during which she had become sick but none of the team seemed to know for sure.  I was surprised that they had tested her for HIV, which rarely enters the differential in China because the infection is supposedly so uncommon (a self-fulfilling prophecy, though; if you don’t look, you won’t know what’s there).  This time around, her family had clearly brought her in because they didn’t know what else to do for her, a point at which in the United States she would have received home services, a wheelchair at the least, or been placed in a facility.  Instead, the team started her on nimodipine given its “protective effects” in vascular dementia.  They said little to the family, for which I could not blame them as there were a hundred plus more patients to see.  When I left their bedside, the son scurried after me, thrusting a paper in my hand with his phone number, asking me to call if I had any more ideas for how to help his mother when I returned to America. 

I doubt there is much more medically we would have been able to do for her in the United States.  There may have been some rare bird diseases missed by the team (and even then probably untreatable), but more than likely this patient had an incurable form of dementia, one that in the United States we’d have little more to offer in the way of treatment.  And, of course, in the United States, we have social services, as inadequate as they may be, that help to alleviate the burden of caring for a loved one with end-stage dementia (and that you would think a communist government would also provide).  But what was so unsettling was that the family didn’t seem to understand this, that none of the doctors had stopped to explain to them that the patient had some terrible neurologic illness, a form of dementia that was clearly not reversible.  Or perhaps they had but the family had simply not grasped the extent of the discussion. 

There is something to be said for giving a family your best-guess diagnosis and prognosis and then helping the family to care for their loved one through a dignified death.  Maybe we only treat ourselves when we feel like we’ve done our best to help a family understand what to expect.  Practicing medicine in the United States, even in the worst circumstances, is a luxury, a pleasure.  

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