It was my 2015 annual check-in and my neurologist and I were in the exam room. I was sitting on one of those little stools with wheels, he was leaning across the exam table. We had just finished discussing my steadily worsening symptoms and treatment plan, which consisted of continuing the RRMS meds I was given while we waited for science and medicine to catch up.
“I need to let you know that I’m getting a second opinion about my treatment from a neurologist at the Cleveland Clinic,” I told him. We had recently returned from our first visit to the Cleveland Clinic and the Mellen Center for Multiple Sclerosis, “one of the largest and most comprehensive programs for multiple sclerosis (MS) care and research worldwide.”
“But in a bigger way,” I continued, “I want to be more engaged and involved in determining and leading my treatment. I don’t want to hurt your feelings and respect your ability, but I have to do everything I can to get the best possible treatment I can. There’s simply too much riding on it now.”
Stomach in knots, I waited for his reaction.
“That’s okay,” he said. “I understand and don’t blame you. I think I’d probably be doing the same thing. But I am glad you told me.”
Great Minds Don’t Always Think Alike
Not long ago I read an article promoting the value of getting a second opinion from doctors, the gist of which Mayo Clinic research finding 88% of the time that a “patient’s original diagnosis changed at least slightly when a second medical professional was consulted.”
What the article didn’t include were ways to actually have that conversation, no “five simple steps for telling your doctor you want a second opinion.” (We love our “five easy ways to be sexier or thinner or have six pack abs or dress right and to be absolutely perfect in every way.”)
I saw multiple neurologists over 13 years before being diagnosed and that came only after self-referring myself to a different practice than the one I’d been using. I am 57 years-old and like others my age, grew up believing physicians were infallible, placing them on an impossibly high pedestal. Combined with the dizzying prospect of having MS, the realization that doctors are humans too, and that the healthcare system is prone to mistakes threw me for a loop.
According to a 2012 National Public Radio program, Talk of the Nation, I’m not the only one who feels this way. “Doesn’t asking [for] a second opinion insult the doctor?” a listener asked the program’s expert panel. “How could it not? You’re saying that you don’t trust his opinion.”
Dr. Leonard Lichtenfeld, deputy chief medical officer, American Cancer Society, was among the panel. Lichtenfeld noted a dearth of well-trained primary care physicians in the United States. “We are not training primary care physicians in this country,” he said, saying that those physicians were specifically taught to “to bring the pieces of the puzzle together.”
MS has given me a far better understanding of how complex our bodies are and how challenging it must be to diagnose and treat serious illnesses like mine. More than that, I’ve learned that the healthcare system (at least in the U.S.) was in part created as a system of aggregating and selling healthcare service services and providers, not necessarily as a system that provides me with better health care.
No Way Around It
Professional caregivers, physicians and specialists absolutely deserve respect (and sometimes perhaps reverence). But it is my health and my life and the only ones who will suffer from the mistakes and glitches bound to happen with this complex disease and within the healthcare system will be me and those I love.
Ultimately there may be no easy way to ask or tell a physician — or any professional for that matter — that you want a second opinion, no simple steps or hacks or shortcuts. We are all humans and we all have feelings and sometimes our feelings get hurt. That’s life, just like my MS is.
I’m glad we had the conversation. I have grown to appreciate my relationship with my current neurologist and now see it as a partnership created for MY benefit. In the beginning there were two opinions that counted, his and mine. Two years ago I decided three heads would be better than two. Besides, we have relatives in Cleveland, have grown to love the city and look forward to our annual visit to the clinic. Cleveland is especially pretty by the lake in the fall.
(This column first appeared in MS News Today on April 5th and was republished with their permission.)