COMMENTARY

Seeing My Way to 'No'

A Physician Perspective on Refusing Care

Alan R. Schroeder, MD

Disclosures

July 30, 2015

Editor's Note:
This article is republished with permission from the author, Alan R. Schroeder, MD, associate clinical professor (affiliate) of pediatrics at Stanford University School of Medicine and chief of pediatric inpatient services at Santa Clara Valley Medical Center. Permission was also granted by Ellipsis, a hospital pediatrics blog that appears on the website of the American Academy of Pediatrics' journal Hospital Pediatrics, edited by Shawn Leigh Ralston, MD. The appearance of the American Academy of Pediatrics name does not constitute endorsement of any good or service.

When I asked my optometrist why I needed a dilated eye exam, his answer was... well, at least factually accurate: "So I can see inside the eye!" I was in his office because I have a nasty habit of losing my prescription eyeglasses and sunglasses, and when trying to get a replacement pair after this most recent occasion, I was informed that over 2 years had passed since I last had an eye exam. Neither my optometrist nor the nearby eyeglass retailer was "allowed" to sell me a new pair unless my prescription was updated. I was perfectly happy with my old prescription, so this struck me as a fairly paternalistic regulation, undoubtedly driven at least somewhat by financial factors. But I was out of options and I made the appointment. However, eye dilation is a hassle, and from my rudimentary ophthalmologic knowledge I had at least some sense that the probability of benefit was minimal at best.

In an article[1] I recently wrote with colleagues on overdiagnosis in children, we suggest that, when a test is proposed, families ask their child's doctor not just what the test is intended to detect but how such detection will lead to net benefit for the child. Clearly my optometrist hadn't read the paper. I pressed him. I have no complaints, no concerning medical problems, and no relevant family history. "Doesn't matter," he said, "there can still be problems." Then he pointed to the results from my visual field test (which he had not reviewed prior to stating that I needed a dilated exam): "See, you have some possible defects in your visual field here." Uh-oh, he had played his trump card and now he was in the driver's seat. I, the patient, have disease. Timidly, I pressed further, recalling that my effort during the visual field test was half-hearted at best. "What could cause that? Are you sure it's accurate?" Already upset with me for having gone 3 years without an eye exam, and for continually refusing the fancy Retinacam® that was offered for a mere additional $30, he sighed, suggested a few unrecognizable conditions, and then added that it could be glaucoma. Now, I'm no eye doctor, but I was pretty sure that you don't need to dilate the eyes to diagnose glaucoma. But I couldn't help feeling that I had already crossed the sacred line in the doctor-patient relationship and that it was time for me to stop being so difficult. For the remainder of the visit, I slipped back into "compliant patient" mode and did what I was told.

My inability to stick firmly with "no" has not been isolated to this visit or this doctor. Most of my visits with healthcare professionals (which I try to keep to a bare minimum) seem to involve some sort of negotiation where they want to do lots of stuff but I don't want any of it. Nonetheless, I usually wind up either surrendering or compromising. When I broke my arm, at each weekly visit the clinic staff would take off the cast and perform x-rays before the orthopedic surgeon even laid eyes on me. I wondered why they wouldn't use the physical exam to guide the x-ray but never had the courage to ask. Dental x-rays are a constant negotiation—with my dentist and my children's dentist also.

I can appreciate why folks like me have a hard time saying no when they're clueless about the test or intervention being proposed. When my mechanic lists everything that's wrong with my car, how can I be sure that the problems mentioned won't result in my car spontaneously catching fire or veering dangerously off the road—tomorrow?! When our contractor says we need a new roof, what do I know about roofs?

But when it comes to matters surrounding my own health, I'm a fairly well-informed and skeptical physician. Why can't I say no? Why do I hear stories like mine from other physician-patients, over and over? How are patients ever expected to question or to say no if we can't? Why should we ever have to feel like we're negotiating at the doctor's office?

I wish I had all the answers. The standard proposed drivers of overtesting and overtreatment—fee-for-service, malpractice, time pressures, etc.—probably drive overly aggressive screening recommendations and/or doctors' apparent inflexibility and persistence. But what about me, as a patient? I'm aware of all of these things, so why can't I advocate for myself? That patients are afraid to "speak up" in the doctor's office is not new news. A study[2] published in Health Affairs in 2012 concluded that collaborative discussion is often hampered by patients feeling compelled to conform to socially sanctioned roles, fear of being categorized as "difficult", and by "authoritarian" physician approaches. There are so many deeply embedded aspects of the medical culture that create the "helpless patient" phenomenon. We call physicians "Dr ______" and they call us by our first names. After we get roomed, there's this big buildup: "The doctor will be in to see you soon." When they arrive, we feel lucky to be getting even a few minutes of their time, so best not to waste it by challenging them with questions. And if I dare say no, what is he going to write about me in the chart? How will it affect the rest of my care? As a physician myself, I am not immune to these forces when I am a patient. In fact, perhaps there is a tacit understanding that I as a physician-patient should know better than to challenge my doctor—a professional code of sorts.

As for my dilated eye exam, what's the big deal? Just do it and get it over with, right? The problem is that I've been around long enough to realize that no test is benign, that any test can lead to a cascade of potentially harmful interventions. Is it possible that there is, in fact, solid evidence supporting biannual dilated eye exams in low-risk, asymptomatic patients? Maybe, though I doubt it. (And is the onus really on me to dig it up?) Any benefit would be predicated on the idea that early detection of disease drives an intervention that is of proven benefit, that these benefits outweigh any harms that might occur either as a result of the test itself or from false positives or overdiagnosis, and that the number-needed-to-screen is not astronomic. If true, then my optometrist failed, miserably, at an opportunity to make his case. Because of that, I'm in the market for a new optometrist, preferably one who, rather than starting the conversation with "Today we will be dilating your eyes," instead begins with "Today I'd like to discuss a dilated eye exam." I may be in for a long search.

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