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Correction to This Article
The article misspelled the last name of William Steinbach, the widower of a scleroderma patient.

For Some Patients, It's a Coping Mechanism

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By Sandra G. Boodman
Special to The Washington Post
Tuesday, October 21, 2008

It's fashionable in health care to talk about the importance of being a knowledgeable, assertive patient and of forging a working partnership with a doctor, a relationship that will speed healing or improve the process of living with a chronic, even life-threatening, illness.

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But as Michelle Mayer, a nurse with a doctorate in public health, discovered, the path to achieving such an alliance often is not an easy one.

Married to a Duke University physician, Mayer said she never set out to become difficult, the sort of patient who is the bane of many doctors. But as she wrote in the current issue of the journal Health Affairs and documented on her blog, http://diaryofadyingmom.blogspot.com, being com-pliant was bad for her health.

Challenging her doctors' advice and making decisions that at times diverged from their recommendations, she wrote, helped her wage a 12-year battle with scleroderma, an incurable and sometimes fatal autoimmune disorder that causes hardening of the skin. Mayer's illness was diagnosed when she was 27; her initial symptoms included extreme fatigue and uncontrollable itching.

"I tried being the 'good patient,' " said Mayer, who until illness forced her to retire was an assistant research professor in the school of public health at the University of North Carolina at Chapel Hill. Becoming difficult -- some, she said, might call it "empowered" -- was her "natural reaction" to doctors who were "incompetent, rude or domineering."

Dealing with difficult patients takes a toll on physicians. In a companion essay published in Health Affairs, Tony Miksanek, 52, a veteran family doctor who practices in a small town in southern Illinois, described his reactions to three difficult patients he saw during one recent week. Among them were a 37-year-old salesman who has refused regular treatment for Type 1 diabetes, a healthy 81-year-old widow with a bad case of "testophilia" -- a strong affinity for unnecessary medical tests -- and a chronically depressed 52-year-old laborer with a neck injury he is convinced won't heal.

Such patients, Miksanek writes, "strain time, patience and resources" and may be hard to like.

Although the doctor-patient relationship has assumed greater importance during medical training and among health plans in recent years, the subject of difficult patients has remained largely confined to private conversations among doctors or occasional rants on medical blogs, as well as a smattering of continuing medical education courses and articles in professional journals.

A 1996 study by researchers at New York's Albert Einstein College of Medicine found that the 15 percent of patients deemed difficult by their doctors were more likely to have psychiatric or alcohol abuse problems and were more dissatisfied with their care than those not regarded as problematic.

The topic achieved brief pop culture fame a year later on the television show "Seinfeld," when Elaine, while seeking treatment for a rash, discovered on her chart that doctors all over New York had branded her as difficult. The reason: She had refused to comply with a nurse's request that she don a paper gown.

But as Mayer and Miksanek make clear, there is nothing funny about being a difficult patient, or dealing with one. In an era where Americans are increasingly expected to take responsibility for their health and make complex decisions and where medical information and misinformation abound -- and doctors are feeling squeezed by time pressures -- the line between "assertive" and "difficult" can be perilously thin.

"This is a careful dance" for many patients, Mayer said in a recent interview. "You can't make doctors too angry, because you need them."


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