How Involved Should Patients Be?

"Patient-centered care," which stripped of all its fuzziness I take to mean that patients should be equal partners (or more) with the physicians who treat them, is a current hot topic in healthcare. At its heart lies a fundamental and fascinating question: Are patients the best judges of their own care? Hospitalist Robert Wachter's current discussion of patient-centered care on his blog, Wachter's World, is long, but it's a great read, touching on almost everything that makes me a little uncomfortable with the concept.

Wachter sets out generally agreed-upon principles of patient-centered care: Patients' preferences should be respected; caregivers should attend to patients' emotional needs—their context, comfort, and significance; patients should be engaged and empowered; there should be shared decision making that promotes patient autonomy; family and friends should be involved in care decisions where appropriate; and care should be coordinated within and across systems. As Wachter says, well, sure.

Does that mean, he asks, that medicine as currently practiced should be replaced with unbounded consumerism? No. Here's his reasoning:

Patients should get as much information as they can from providers and other sources, they should be able to bypass the traditional medical system for care if it suits them (including through Web 2.0-type sites and social networks), and they should always be treated with dignity and respect.

But they should not have the right to demand care that is harmful or non-evidence based. Why? Because the hospital is not a Starbucks. Starbucks is there to meet my wants for coffee, chocolate, and whipped cream, and they do a damn good job of it. And I make a private, independent decision that spending $3.25 of my own money to buy such a concoction is a good call.

As long as we have a system of health insurance, healthcare will be a shared resource: more for one is necessarily less for another. I know, much overuse isn't patient-generated, it is doctor-generated and it can be readily explained by profit-seeking behavior among my professional brethren. That is disgusting and needs to be addressed. But to say that patients have a right to any care they want—since they are indelibly in charge—can't possibly work. Moreover, as I wrote a few months ago, placing the burden of decision-making on patients and families (particularly in decisions surrounding end-of-life care), as the autonomy movement would have us do, oftentimes places them in a wrenching position.

Which gets back to the question of whether patients are the best judges of their care. Wachter's answer:

Nearly three decades ago, Franz Ingelfinger, editor of the New England Journal of Medicine, developed stomach cancer, an amazing irony since he was one of the world's experts in this cancer. When he sought help from his physician colleagues at various Boston hospitals, everyone deferred to him, asking, "What do you think we should do?" This left him tied up in knots of indecision and anxiety.

Finally, one of his friends gave him wonderful advice, which he described in a New England Journal article [Dec. 25, 1980] simply entitled "Arrogance."

"Franz," he said, "what you really need is a doctor."

Even as we embrace a more patient-centered model of care and accept—even welcome—far more empowered and knowledgeable patients, we can't forget that sometimes patients really need a doctor. We don't do them any favors when we duck that responsibility.