Has 'Patient Centeredness' Gone Too Far?

H. Jack West, MD


May 29, 2020

"Well, the person I want managing my cancer is me," my patient told me in no uncertain terms.

We were discussing the growing sense, felt mutually, that our therapeutic relationship was not working as we both would have liked. I told her that I felt I had the expertise to manage her case without taking direction from other doctors from whom she had solicited opinions or medical information she found online. That said, I never felt that I was dismissive of her questions or suggestions. She wanted to be in control and for me to write the orders for the lab tests, imaging, and treatment that she decided she needed.

Cases like this embody how the patient-physician relationship has evolved remarkably over the past few decades and even noticeably over the course of ongoing careers for many of us currently in practice. In fact, even the name for this relationship has flipped from the "doctor-patient" relationship we contemplated during my medical school years.

I have long supported the transition away from a paternalistic model of medicine wherein a doctor tells a patient what to do without additional explanation or context, and toward one that welcomes and encourages questions from patients and a thorough discussion of different treatment options. Ideally this leads to shared decision-making, where we mutually arrive at the best course of care based on my presentation of the anticipated benefits and risks of each option and the patient's personal preferences. I am deeply committed to the concept that patients can become sophisticated participants in their own care, so much so that I started an online cancer education nonprofit more than a decade ago that is dedicated to equipping patients with the tools to shape their conversations with their cancer care team.

I think it's a mistake to belittle the efforts of patients who learn what they can online with mugs that say "Don't confuse your Google search with my medical degree." But at the end of the day, only the physician has the license and responsibility to order tests and treatments for a patient, and they should feel that they are the ones with their hands on the steering wheel. I fear that the rallying cry of "patient centeredness" is creating a sentiment in some patients that they are the customer and the customer is always right.

I still believe that patients can become extremely sophisticated, thoughtful participants in their care. But the reality is that when you survey the many information sources that patients may use, some are far more credible than others. The website for the nonprofit I founded, Global Resource for Advancing Cancer Education, discusses current views on the best treatments in the context of appropriate molecular testing, randomized trial results, and the ambiguity of potential alternatives. What patients find in the mass media or online chat groups may occasionally be informed, but more often it features recommendations for supposed "game-changers" or "breakthroughs" based on early-phase or even preclinical study results, alternating with patient testimonials and admonishments to "not let them tell you no."

It is vital for patients to feel comfortable asking questions, but they also need to accept a physician's recommendation for or against something without it being perceived as a failure to accede to their demands. Similarly, we need to set limits acknowledging that we have other patients to see on a given day.

In these discussions, far too few patients understand that the bottom two thirds of the fine print enumerating a drug's many, many potential side effects are listed by the pharmaceutical company's legal team simply as a "cover-your-ass" maneuver to absolve them of responsibility for possible negative outcomes with their treatment. They are not hidden clues that explain multifactorial, nonspecific symptoms like fatigue.

We also need to remember that the tenacious foothold of fake cancer remedies in the minds of the lay public—as well as the entire existence of the antivaccine movement—is predicated on disinformation, along with a view that "science" and "evidence-based medicine" should be considered pejorative terms. There is great harm in elevating these patient perspectives as appropriate for medical decision-making.

Of course, like so many complex issues, the answer remains a shade of gray. It was long overdue for the medical community to recognize the importance of educating patients and welcoming their participation in shared decision-making. But only one side of the patient-physician relationship has the experience and medical training, as well as the legal responsibility, to direct care. The patient should be at the center, but that shouldn't sideline the physician.

H. Jack West, MD, is an associate clinical professor and executive director of employer services at City of Hope Comprehensive Cancer Center in Duarte, California. He founded the Global Resource for Advancing Cancer Education, co-hosts the "West Wind" podcast, and regularly comments on lung cancer for Medscape.

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