Communications with Your Epilepsy Doctor

By:  Lance Fogan, M.D.

Photo Credit:

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.

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 (Stern, Cendes, Gilliam, et. al., 2018)

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 culture-based, like Americans avoiding saying someone died. Rather, we say they “passed

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.”


Stern JM, Cendes F, Gilliam F, Neurologist-Patient communication about epilepsy in the
Unites States, Spain, and Germany. Neurology Clinical Practice. 2018; vol 8 (2), pg 93-101.

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