Patients’ fear of being ‘difficult’ may hurt care, study finds

The Republic

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 study published Monday 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.

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