The Art and Science of Doctor-Patient Interactions

Although I have had some solid doctor-patient interactions over the years, the encounter that has stuck with me most vividly was, quite frankly, atrocious.

When it became clear that my optic atrophy was progressing, I was sent to a neuro-ophthalmologist for an extensive workup. After much handwringing, he decided that genetic testing was in order. When the results came back several months later, I received a phone call on a Friday afternoon from his office manager. “Your test results are in, and Dr. So-and-So would like to review them with you on Monday.” As a general rule of thumb, it is probably not a great idea to make a patient sweat all weekend, but I’m a good sport.

Monday arrived, and my phone rang—it was Dr. So-and-So with some big news! My genetic test results had arrived, they were clear-cut, and although it was obvious that the doctor did not understand them, he was confident enough to share two tidbits of information before trying to end our 30-second phone call abruptly. One, I needed to see a genetic counselor, and two, to the best of his knowledge (ie, what we both had just Googled), the good doctor believed that he had just delivered a rare disease death sentence. Who said optic atrophy can’t be interesting?

Before our call ended, I requested a copy of my genetic test results. It wasn’t until the end of the week that it became clear that the neuro-ophthalmologist wasn’t quite correct in his pronouncement. The doctor (with whom I haven’t spoken since this call transpired in February 2020) believed that he was sharing news of a diagnosis of Wolfram Syndrome, a rare disease that classically presents with optic atrophy, diabetes, sensorineural deafness, and, most strikingly, brainstem atrophy resulting in respiratory dysfunction. As a result, many patients die by age 35.

Instead, my optic atrophy, which presents much like progressive glaucoma, is caused by Wolfram-like syndrome, a rare disorder of the endoplasmic reticulum that typically manifests with optic atrophy at around 6 to 8 years of age and diabetes several years later. Although I am going blind and have arguably outlived my utility at 35 years of age, I am not dying as quickly as Dr. So-and-So believed. I am also not diabetic. Needless to say, this doctor-patient interaction was not a positive one. However, my subsequent appointment with a key opinion leader on Wolfram syndrome and Wolfram-like syndrome was top-notch.

What made the latter interaction so positive? Aside from our discussion of my almost laughable misdiagnosis, there were a few defining characteristics, all of which were lacking in the previous encounter. These included empathy; humility; dialogue; humanity; compassion; and clear, honest communication.

Although instruction on the basics of bedside manner is becoming more commonplace during the course of medical training, this wasn’t always the case. As a result, empathy, a foundational element of positive clinical encounters, is sometimes missing from doctor-patient interactions. On the topic of humility, patients typically understand that doctors have gone to school for a decade or more and are experts in their fields—that is what prompted their visit. Patients, however, also do not expect their doctors to know everything, especially about the diagnosis of a rare disease that makes someone patient No. 17 with a particular type of dysfunction only recently discovered by the scientific community. In this situation, the best course of action is for doctors to explain that they are not an expert in this area, connect the patient with the appropriate resources, express their support, and address questions and concerns to the best of their ability. Doctors can try to put themselves in the patient’s shoes and imagine what this person must be going through.

When interacting with a patient who has just been diagnosed with glaucoma, some simple steps to take to improve the clinical encounter are as follows:

• No. 1: Explain the diagnosis slowly and clearly, using language the patient can understand. Remember, patients are not usually experts in ophthalmology (at the time of my initial diagnosis, I was working in ophthalmic drug and device development, but this is not the norm).
• No. 2: Listen thoughtfully to the patient’s concerns and respond with empathy and compassion.
• No. 3: Provide instruction on how to administer eye drops correctly and reiterate why this is important. Do so using terms (or, better yet, videos) that the patient can understand. This information can have a dramatic impact on medication adherence and may help to limit disease progression.
• No. 4: Connect patients to valuable resources, including patient support groups, advocacy organizations, and nonprofits such as the Glaucoma Research Foundation.
• No. 5: Be patient.
• No. 6: Be kind above all else.