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posted: 7/30/2012 6:00 AM

Patients' fear of being 'difficult' may hurt care, study finds

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  • Patients often defer to their doctors to avoid being labeled as "difficult," a new study finds.

    Patients often defer to their doctors to avoid being labeled as "difficult," a new study finds.

By Victoria Colliver
San Francisco Chronicle

Hugo Campos doesn't view himself as a difficult patient. But he senses his doctors' exasperation with him because of his insistence he be given all the medical information they have about him.

"I want to be empowered, I want to be in charge, I want to know what's going on," said the Oakland, Calif., resident, 45, who has repeatedly asked for the raw data from the defibrillator implanted in his chest to regulate his heart. That's information currently available only to doctors and device makers.

"My understanding of their perception is they want me to consent, comply and basically shut up -- to let them do their job," he said.

Campos' assertiveness with his doctors may be rare among patients. A recent study shows that patients often defer to their doctors for fear of being labeled "difficult."

But patients who take that approach can hinder their ability to fully participate in decisions about their health, according to the study, which appears in the journal Health Affairs.

In the study, 48 Bay Area patients recruited from Palo Alto, Calif., medical practices said they feared that challenging their physicians or asking too many questions might result in lower-quality care or strain their relationship.

The study referred to a 1996 episode of "Seinfeld" in which the character Elaine discovered her physician had described her as "difficult" in her medical chart, a label that made it hard for her to get treated for a rash -- even after she changed doctors.

"The experience Elaine had in that episode is very similar to what our participants were talking about," said Dominick Frosch, the study's lead author and an associate investigator at the Palo Alto Medical Foundation Research Institute.

Study participants made comments like "I don't want to rock the boat" or they worried they would irritate the doctor. "I was brought up in the generation which ... elevated doctors to a high throne in heaven someplace, and that's just not true," said one 86-year-old woman in the study.

"What's interesting to us is these were mostly Caucasian, highly educated, well-to-do people, and they're talking about these difficulties," Frosch said. "It's difficult to imagine this is easier for people in a less advantageous social position."

But health experts say the rules are changing. Patients are increasingly being asked to take a greater personal and financial role in their health decisions, whether it's by selecting a doctor or hospital based on coverage options or choosing between treatment options when there is no clear superior choice.

The federal health law actually requires shared decision making between patients and doctors as an essential part of its programs. And the wealth of health information available online also contributes to patients' increased involvement.

"The people who are more likely to be labeled 'difficult' are pretty involved in medical research and are likely to show up in the doctor's office and say, 'I know what I want, and I want you to help me get it,'" said Joanna Smith, a patient advocate who runs Healthcare Liaison Inc. in Berkeley, Calif.

Smith said she tries to bridge the gap between what patients want and what doctors can provide. "Medicine has gotten too complex, and we haven't given people good tools to understand how to make a complicated medical decision," she said. "And it's only going to get more complex."

Doctors also share the responsibility, said Dr. Alan Greene, a pediatrics professor at Stanford University School of Medicine and founding president of the Society for Participatory Medicine.

"When we talk about participatory medicine, the biggest challenge often is that (doctors) say, 'I'm already doing that,'" he said. "But in reality, that's not really happening."

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