The dreaded ‘D’ label

Raise your hand if you’ve ever been too meek at the doctor’s office because you didn’t want to be labeled as difficult.

Yup, me too.

A recent study found that many patients wanted to be more involved in making treatment-related decisions, but often held back from doing so because they were afraid it would strain the relationship with the doctor or result in poorer care.

It’s an interesting finding, yet it probably comes as no surprise to the many folks who are trying to navigate the shifting tides of the doctor-patient relationship.

The San Francisco Chronicle, which reported earlier this month on the study, spoke to Hugo Campos of Oakland, who has been an outspoken advocate of gaining access to the raw data from the defibrillator implanted in his chest – data that’s currently only available to doctors and device manufacturers.

Campos said the issue is too important for him not to speak up, but acknowledged that “whenever I go in, I’m walking on eggshells. I’m thinking, should I say this? There’s no real partnership when you feel like you have to hold back. But I think health care is not quite ready for a true partnership.”

“We have some work to do to educate patients,” agreed Julia Hallisy, a San Francisco dentist and author of “The Empowered Patient.” “We’ve had this paternalist model where we tell the patient to sit back and let us take care of you. Now all the rules have changed.”

This study wasn’t large. From a demographic standpoint, it may not even have been very representative of the typical American patient.

The researchers recruited 48 patients from three primary care practices in Palo Alto, Calif., to participate in focus groups. Most of the patients were older than 50, educated and affluent – in short, the type of patients who would be expected to be relatively confident about asking questions. But if these folks are hesitant to challenge the doctor, you can’t help wondering about patients who are farther down the socioeconomic ladder.

What were some of the issues that emerged from the focus groups? For one thing, many of the participants said they felt some pressure to play the “good patient” role so they could avoid giving the impression they were challenging the doctor’s expertise. Although they respected the doctor’s training and knowledge, they often saw doctors as authoritarian and felt doctors themselves perpetuated this image.

When they turned to online information about their health, it frequently was because they didn’t want to rock the boat with the physician –  or because there simply wasn’t enough time during the appointment to get their questions answered.

The focus group participants reported feeling “vulnerable and dependent on the good will of their physicians,” the study’s authors wrote. “Thus, deference to authority instead of genuine partnership appeared to be the participants’ mode of working.”

Previous research doesn’t seem to have done much exploring of this aspect of doctor-patient communication. There’s a lot of talk these days about patient-centered care and shared decision-making, but how much attention has really been paid to the voices and experiences of patients themselves? More to the point, why not? That patients would fear being labeled with a scarlet letter “D” for speaking up – or, worse yet, their fear that it would be recorded in their chart and somehow influence the care they receive – ought to concern the health care community.

If this study is any indication, many patients genuinely do care about the quality of their relationship with the doctor and are hesitant to do anything that might jeopardize it. Doctors, for their part, may not even be aware of their role in creating an environment that discourages open communication.

There doesn’t seem to be an easy path toward a more equal partnership between doctors and patients, but listening to each other and attempting to lessen some of the barriers is as good a place as any to start.

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