You understand that your decisions for your epilepsy care are critical to the quality of your life. A study was published examining in-office patient-neurologist conversations that focus on identifying your type of epilepsy, sharing decisions about your care and continuing plans for your condition.
A study of transcripts and audio recordings of conversations between patients and neurologists were analyzed focusing on epilepsy diagnosis, treatments, and prognostic considerations. The strategies for eliciting this information were assessed for strategies of information elicitation, word-level information, identification of topics discussed, quantification of questions probed, and types of questions asked.1
Neurologist-patient interactions were analyzed in the United States, in Spain and in Germany. Neurologists tended to utilize event-based language. They referred to seizures in patient-friendly vocabulary. In the United States the term “epilepsy” tended to be avoided. This is cultura-based like Americans avoiding saying someone died. Rather, we say they “passed away.”
In all three countries it was the neurologist who were unilaterally responsible for the treatment decision and choice of medication. A team effort is sometimes appropriate in medication decisions. When new medicines were described neurologists most often discussed potential side effects but did not review potential benefits. “Seizure control” rarely was defined. Patients were not asked what seizure control meant to them. Did I mean absolutely seizure-free or a very infrequent seizure may be acceptable to be “free” of seizures because “My last seizure was 8 months ago, or a year ago”. I would not consider this to be seizure-free.
This paper identified opportunities related to vocabulary, decision making, and treatment goal setting. All these facets can improve communication about epilepsy.
I recommend that you as the patient bring along your significant other to attend your meetings with your neurologist. That person should participate in all the discussions and ask pertinent questions along with you. Certainly, “two or more heads are better than one” in your doctor’s office. When I was in practice, I would often create the scenario after complex discussions I had with the patient who had come alone, “So, when you get home and your wife/ husband asks, “What did the doctor say?” I often heard the patient respond, “Nothing” or “nothing new” or something completely off the mark.
I urge you all to bring someone along to be in the office/treatment room, if appropriate, whenever you visit a physician/clinic. You’re bound to get more for “your buck.”
1) Stern JM, Cendes F, Gilliam F, et.al. Neurologist-Patient communication about epilepsy in the Unites States, Spain, and Germany. Neurology Clinical Practice. 2018; vol 8 (2), pg 93-101.
Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. His hard-hitting emotional family medical drama, “DINGS, is told from a mother’s point of view. “DINGS” is his first novel. Aside from acclamation on internet bookstore sites, U.S. Report of Books, and the Hollywood Book Review, DINGS has been advertised in recent New York Times Book Reviews, the Los Angeles Times Calendar section and Publishers Weekly. DINGS teaches epilepsy and is now available in eBook, audiobook, soft and hard cover editions.
