Caregiving helps protect patients from harm

April 25, 2011

This author had no bag of medical administrative tricks to deal with the new of his mother's Lou Gehrig's disease.

"It's nothing. Just having trouble with my sinuses," she said. "Allergies from that darn Oklahoma ragweed, I suppose. Don't worry about me. It will clear up in a few days."

Two weeks later, we spoke again, only this time my alarm bells faintly rang. Her tone was nasal and flat. She seemed unable to clearly articulate common words, stumbling frequently when she spoke in long sentences.

The long silence on the other end of the line made the hairs on the back of my neck stand up. Something was wrong.

Finally, she spoke in almost a whisper. "I went to the doctor," she answered. "He thinks I need to see a neurologist."

"JOURNEY OF REDEMPTION" BEGINS

Looking back, I think this is the point at which my journey of redemption began.

I was working in Kansas City as a chief medical officer. Several years prior, I had traded the clinical white coat for the suit and tie of administrative medicine. Tired of what I had perceived as the clinical treadmill of endless night call and prescription refills, I told myself that I could be more effective in developing policies that affected many patients rather than one.

I had followed the advice of moving to advance my career and was working in a large two-hospital system. This work took me away from home and family, but I was only a phone call away and, of course, there were always the holidays.

Mom always had been proud of her son the doctor. Strangely, I didn't realize I never had heard her say that she was proud of her son the administrator.

DEVASTATION AND DISTANCING

My father had died many years earlier, and I was intimately and clinically involved in his final days. Being the good son and doctor, I tried to be the go-between, handling his fears while trying to persuade the rest of the family that everything would turn out all right.

When he died despite everyone's best efforts, I was emotionally and professionally devastated. I swore then and there that I would distance myself from providing clinical care when family was involved.

Now, Mom had been asked to see a neurologist, and my clinical gut knew this wasn't good news.

"Are you sure you don't need to see an allergist?" I asked. "Sinus infections sometimes can take weeks to clear up. Maybe you just need your medications adjusted."

Mom seemed as if she was to trying to measure her words, but what she said next had me clearing my calendar to go home: "I'm scared." She then quickly hung up the phone.

My wife and I arrived home the following weekend, and I quickly learned the details my mother conveniently had left out: She had seen the neurologist, and he had recommended a visit to the Mayo Clinic. A quick 2-day trip to Rochester, Minnesota, confirmed what my internal alarm had feared: bulbar palsy rapidly progressing to amyotrophic lateral sclerosis (ALS).

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