ALS Advocacy

ALS Advocacy
Lou Gehrig's Disease - Motor Neuron Disease - Amyotrophic Lateral Sclerosis
Thought it had been cured by now? Still no known cause. Still no cure. Still quickly fatal. Still outrageous.

Saturday, July 14, 2012

Clinicians' and Patients' Perceptions Differ In So Many Ways

Here is a very interesting article on the perception gap related to ALS treatments.

The article cites patients' perceptions and included data shared by patients at www.patientslikeme.com.

Conclusions were that both perspectives need to be taken into consideration.  For this we needed a study?

It shouldn't be a news flash that there are many perception differences between patients and physicians; however, we seldom talk about them frankly.

Decades ago in the pre-mall age when I was in junior high, my best friend and I would take the bus downtown for shopping or lunch or a movie or to buy records (remember those?).  She was the daughter of a prominent surgeon.  She was also diabetic and had to have regular blood tests.  On one of our shopping jaunts, she had to stop at the big medical building downtown where most of the docs in our city had offices.

I had spent so many hours in that building's waiting rooms as a child that I can still remember its smell and terrazzo floors.  The eye doctor always had Readers Digests that fell apart from wear or  Highlights that had been spoiled with someone else's crayons.  The orthopedic surgeon had the constant sound-effects of typewriters.  One typist would click-clack so fast, only to have long pauses for the eraser. That would make some of the waiting patients smile.  The internist had little to read but that wasn't an omen of quick service. He managed to have a ritual waiting period even if you were the first patient in the morning.  Time went quickly because there was often a booster shot waiting.

Shortly before lunch time that day, I followed my friend into the endocrinologist's office where she was to get her blood test.  There were people in the chairs in the wood-paneled waiting room.  Ugh. I had visions of a terribly late lunch.  She checked in and was welcomed like a long-lost friend.  She went straight through the magic door that requires the dreaded waiting-room initiation for mere mortals.  She was out in five minutes and there wasn't that added step where you had to hand a check to the bookkeeper.  It was a very pleasant and efficient experience.

That was my first clue that physicians and their families do not experience the same healthcare delivery system that the rest of us do.  They have access.  They receive professional courtesies.  They certainly have earned those things.  In any profession, there is a peer respect that oils some wheels.

Do our physicians admit that they've not really experienced the healthcare delivery that their patients have?  Do they try to understand the differences?

Fortunately with the perception gaps related to treatments described in the article, physicians and allied professionals have ways to look online and try to understand those gaps... but do they?

Walking a mile in the other person's shoes is always good.  Are any neurologists up for spending a day in the other person's wheelchair during a grueling morning at the ALS clinic?  Of if you want to stick with walking in another's shoes, the caregiver gig at the doctor's office isn't a walk in the park.


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