Gray Matters

Orlando Sentinel
By Bard Lindeman

You’re sick. You need a doctor. Maybe you’re headed toward a hospital. Trust me, now you need someone else by your side: an advocate!

An advocate is a “health partner”– someone knowledgeable and feisty, someone to ask questions and not settle for incomplete or insincere answers.

Why, you properly ask, do I need an advocate? Three reasons, for openers.

*Every year, 1.5 million patients suffer from what the health-care system deems “medication errors.” In plain language, some dope (well-meaning or otherwise) gives unsuspecting patients the wrong medicine. (Source: 2006 Institute of Medicine report.)

*According to evaluators at the Institute of Medicine, “preventable medical errors” result in the deaths of 44,000 to 98,000 patients every year. (Source: 1999 Institute of Medicine report.)

*A New York Times headline: “Doctors Say Medication Is Overused In Dementia.” Indeed, with drug advertising directed at the lay audience, doctors come under pressure to prescribe — and they do. Hapless Alzheimer’s patients, and others, are needlessly given potent drugs that achieve little or no good.

Consider sales of newer antipsychotics (Risperdal, Seroquel and Zyprexa) totaled $13.1 billion last year, up from just $4 billion in 2000. The Times explains that with nursing-home residents, “It’s much easier to use sedatives and anti-psychotics, despite harmful side effects.”

An advocate asks, “Does my mother (the patient) truly need this drug? What are the side effects? How long will she be taking it? What is the cost? Is there no other recommended therapy?”
Time for a confession:

In what now seems another lifetime, the mother of my three children checked into a suburban Chicago hospital for exploratory surgery. Eight days later, Adele Mullen Lindeman, age 40, was dead of a virulent infection, while her contrite surgeon said, “This never should have happened.” I agreed, wholeheartedly.

Today, 37 years thereafter, the middle child is a board-certified internist and emergency-room specialist, while I remain a staunch supporter of patient advocacy. Moreover, I am medical science’s enthusiastic booster, and, as well, its persistent and loud critic. I’m not alone.

In the current issue of the National Family Caregivers Association newsletter, Ilene Corina tells of the death of her infant son. This death led Corina to become a patient-advocacy champion.

“No matter what people say,” she explains, “the lines of communication are still not open. . . . The advocate’s role must be to raise the level of communication with the medical team.”

The focus of Ms. Corina’s organization, PULSE, is to teach people to become effective advocates, accepting how both you and the doctor are “on the same side.” Moreover, the advocate needs to recognize that “it’s possible to be respectful, yet still forceful.”

One more thing. Advocacy is an issue not only with doctors and hospitals. Nursing homes, watching over some 1.4 million residents, belong inside the great circle of influence.

I asked knowledgeable Elma Holder, founder of the National Citizens Coalition for Nursing Home Reform, what she would do if her mother became a resident.

“I’d move in myself,” she answered. “I’d take the bed next to hers . . . and watch out for her 24 hours a day.”


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