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When Trusted Medicine Fails You

Having a brain injury makes you vulnerable to changes in scope of practice.

“The survey of physicians providing at least 20 hours a week of direct patient care found that 56 percent report unhappiness with the current state of medicine and 34 percent say that the reality of practicing medicine is worse than they had expected.” —Robert Nagler Miller, Millennial physicians sound off on state of medicine today, AMA, 27 Mar 2017

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I’ve been seeing an ophthalmologist almost my entire life. I trust my eye doctors implicitly and know what to expect, even as each in turn retired and I moved on to the next. Although technology changed, and physician demeanor varied between them, every ophthalmologist provided the same attention to my eye health. I have a scarred eye from the measles and dramatically changed vision from the brain injury. Although I’m technically monocular, surgery in 2016 to help with the brain injury changes gave me for the first time some binocular vision. Unfortunately, my brain doesn’t like it, and I had to relearn how to perceive, proprioceive, walk, and recognize faces, as well as fight to keep it. It’s both an amazing blessing and a daily struggle. But I knew my ophthalmologist would properly examine my eyes and keep me reassured that my retinas and eyeballs are doing OK in the struggle.

Unlike with brain injury medicine and for decades, I could count on this non-brain injury side of medicine. No longer.

Patients who regularly see specialists learn what to expect and how to differentiate between a good exam and a rushed or minimal one. They learn what the practice of a particular specialty entails and how technology and/or additions to staffing enhance it. We adjust to these changes and continue to trust. What we don’t expect — I certainly didn’t — is for the specialty itself to change. Not only are over half of physicians unhappy with the current state of medicine, so am I.

I find myself this year in the strange position of no longer knowing what ophthalmologists do and having to relearn what optometrists do. Where I live, Medicare pays for once-every-12-months eye exams for adults my age with certain conditions. Every year, I trundle to my ophthalmologist; their assistant assesses my vision with eye charts and a machine and checks pressures; they dilate my pupils; they use another machine to image my retinas and optic nerves; and the ophthalmologist reviews the results on their computer, watches how my eyes move, examines my retinas and the rest of my eyeballs, assesses which lenses work best for which eye for reading, computer, and distance, and discusses my difficulties. I also receive a copy of my results and a prescription if necessary. My ophthalmologist recently instituted a no-prescription policy, but I thought it was due to their pending retirement. This year, with being referred to a new ophthalmologist, I learnt, not so. And it isn't the only change in practice.

I've recently learnt that after staff do the usual, ophthalmologists may check pressures themselves and examine the backs of my eyeballs quickly. But they don't assess my vision with lenses, watch the movement of my eyes, have staff image my retinas and optic nerves, and discuss my difficulties or results because apparently optometrists do all these things now. Since when? How can a non-medical specialty understand my other medical conditions without having medical training and integrate it with eye care like an ophthalmologist should be able to?

I’m so confused. And confusion breaks trust.

From a conversation with my GP, I gather I’m not the only patient upset at the changes in the practice of medicine. Other patients are making the same complaints about other specialties and family medicine. I'm fortunate that my GP doesn't have a one-problem-per-appointment policy, as brain injury comprises multiple problems showing up at erratic times. But for years now, patients have been confronted by this policy. Shrinking the practice of medicine breaks patient trust and ruins the doctor-patient relationship.

“The doctor-patient relationship involves vulnerability and trust. It is one of the most moving and meaningful experiences shared by human beings.” —Fallon E. Chipidza, Rachel S. Wallwork, and Theodore A. Stern. Impact of the Doctor-Patient Relationship. Prim Care Companion CNS Disord. 2015.

Brain injury makes processing unexpected change slow. I could not comprehend a long-established specialty practice changing to the point of eliminating essential elements. Because ophthalmologists have changed the way they examine patients and no one had explained this radical change to me in a way I could comprehend, I’m left with basically having no annual exam this year. Medicare will not cover my eye exam being redone properly by an optometrist. For about the next 12 months, I will have to live with the difficulties I’m having with reading, seeing the computer, and walking because of changing vision. I feel like my vulnerability was trampled by a system of medicine that doesn’t take into account brain injury impeding understanding of change, nor patient expectations of good care, and that doesn't work to maintain “trust, knowledge, regard, and loyalty....the 4 elements that form the doctor-patient relationship, and the nature of this relationship has an impact on patient outcomes.” (Chipidza et al.) My immediate patient outcome is a rocketing of my stress levels.

What really astounds me is that I’d come to expect inadequate care for brain injury and having to go outside the medical system for objective diagnostics and effective treatments but not for basics like eye care. With change like this, though, is it any wonder that patients turn to non-medical specialties for their health care? I don’t know what the answer is to restore trust in the practice of medicine, but perhaps not shrinking the scope of practice would be a good start.

Copyright ©2022 Shireen Anne Jeejeebhoy

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