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The article misspelled the last name of William Steinbach, the widower of a scleroderma patient.
Being Difficult
For Some Patients, It's a Coping Mechanism

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.

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."

Nor is there a consensus about what "difficult" means. Some doctors regard patients with substance-abuse problems or those who don't take their advice as difficult, while others are bothered by patients who exude a sense of entitlement or who repeatedly complain about symptoms for which no physical cause can be found.

"Difficult patients are in the eye of the beholder," said Arthur A. Levin, director of the Center for Medical Consumers, a New York-based patient advocacy group, who considers the term an artifact of a time when doctors were regarded as omniscient and patients were expected to unquestioningly do what they were told.

"My worry is that it locates all the problem with the patient, when the question for doctors is why the relationship is not going well," said Robert Arnold, a professor of medicine at the University of Pittsburgh who studies doctor-patient communication. "I think sometimes doctors find patients difficult because they push our buttons. A lot of doctors, including me, have a problem with control."

In some cases, said Children's National Medical Center physician Nathaniel Beers, president of the D.C. chapter of the American Academy of Pediatrics, patients who seem difficult may "just really be advocating for high-quality care" for themselves or a relative.

In Beers's view, difficult behavior typically has a cause, although it may be rooted in an earlier encounter with another doctor. "There's often some provocation that has occurred," he said.

One 52-year-old Washington policy analyst said her oncologist recently implied that she was difficult because she asked questions about his recommendations for treating her breast cancer.

"Are there difficult doctors who don't like to be questioned?" asked the woman, who requested anonymity to avoid alienating the oncologist, on whom she is dependent.

"It takes a huge amount of fortitude to do this when you're alone in a doctor's office" and are ill, she said. "His attitude is that I should just leave it to him."

Miksanek said he would not consider such a patient difficult. His own list includes those who blow off his recommendations; those who demand every new test, whether they need it or not; and patients who make "reverse house calls" and show up at his home unannounced at night or on weekends. Then there are those who complain that they are not getting better. "They say, 'I've been coming here for three visits and my knee still hurts, but I don't want to lose 50 pounds.' "

Regardless of the difficulties treating such patients, Miksanek said that the worst thing a doctor can do is to terminate the relationship by saying "there's nothing more I can do for you."

"That's like a nuclear bomb," he said, adding that in some cases patients may have nowhere else to turn. "My antidote to a lot of these difficult patients is simply time."

Other doctors practice preemption.

Maryland pediatrician Daniel Levy is among them. Levy said that a few weeks ago he received an emergency page on a Sunday afternoon from a mother of three who said that her youngest, a 2-year-old, had a fever and that the pain reliever was wearing off after four hours, not six, as the label indicated. The child was otherwise healthy and did not seem agitated or lethargic -- two danger signs -- and Levy knew that the mother had faced similar situations with her older children without a problem.

"Everyone in my practice knows that when they get an after-hours page [from certain people] it's not an emergency; the parents are decompensating," said Levy, who gave the mother the same simple instructions he had when her older children were ill. Later that evening, he called to see how things were going.

"I knew the kid was fine, but I knew that a strategic call to the mother would let me see how she was doing," he said.

Mayer, the scleroderma patient, said that in her experience, such demonstrations of concern were rare.

Living in the South, she said, she quickly learned to tone down what she calls her native Philadelphia feistiness.

For months after she first developed symptoms, she said, she was told she did not have scleroderma, although she was sure she did. One specialist told her to take a chemotherapy drug that had been found to be ineffective against the disease in randomized clinical trials; when she asked about this, he brusquely rebuffed her inquiry. Another specialist told her she was likely to become "very sick, very fast." A third spent less than 10 minutes with her before telling her that although she had flown hundreds of miles to see him, there was nothing he could do. "I have a waiting room full of patients," he said, visibly irked when she persisted in asking a question.

"All this expert advice left me feeling as if I should lie down and die," she wrote.

After much trial and error, and with the support of her husband, an infectious-disease specialist, she found a rheumatologist 200 miles from her North Carolina home, and a sympathetic family practitioner nearby who helped coordinate her care.

"I have found that those providers who saw me as a partner rather than a passive recipient of their knowledge and advice were the most supportive and helpful," she said. Mayer said she wrote the Health Affairs essay out of frustration and as a plea to physicians to listen to patients.

In the end, although Mayer derived strength from doing things her way, which may have prolonged her life, her disease won. She entered the Duke hospice in late September and died there on Oct. 11, her 11th wedding anniversary. A few days before her death she left the hospice briefly to spend time at home with her children, ages 7 and 9.

"She was just trying to live the best she could as long as she could," said her husband, William Stainbach. "It's more difficult if you have a rare disease, but she found doctors who would work with her."

Shortly before her death, Mayer said in an interview that she worried about the ordeal experienced by other patients, difficult or not.

"We speak English, have great insurance, money, tons of education and my husband has connections, and we couldn't get the system to work," she said. "I fear what happens to other people."

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