Abandoning the term “psychogenic nonepileptic seizures” (PNES) in favor of “functional (dissociative) seizures” or simply “functional seizures” needs to be examined. We need to consider possible unintended negative consequences of this name change.
My sense of urgency comes from a troubling scenario I foresee. Read on and feel free to challenge me on this or propose alternative scenarios.
One possible scenario I foresee once FD/S or FS is adopted universally:
After days in an epilepsy monitoring unit (EMU), the patient is told, “You do not have epilepsy; you have functional seizures.” Although the task force academicians added the word “dissociative” to their proposed “functional/dissociative seizures” to acknowledge the “psychological” part of this disorder, at least two problems may emerge. First, many patients don’t understand the complex concept of dissociation and may not realize the “psychological” in it. Second, some neurologists presenting the diagnosis may go a step further omitting the “dissociative” part altogether. It’s a mouthful, harder to explain quickly, and risks reopening the very psychological discussions that some would rather not have with the patient. Because the label deliberately avoids anything sounding “psychological,” the team can now deliver the diagnosis without ever mentioning adverse life events, psychiatric comorbidity, or mental health. Meanwhile, patients leave the hospital without a fuss because they hear “you have a neurological something or other that we still haven’t quite identified, but rest easy, it’s “real” and respectable, not like those shameful mental disorders.” And thus, that entire difficult conversation is neatly avoided.
But then what? What happens with treatment and referral?
In many, many EMUs at least in the US, most PNES patients are discharged without a referral to a qualified mental health professional. I base this on a survey we conducted on www.nonepilepticseizures.com in which we asked: “When your doctor gave you the diagnosis of PNES, did you receive the name and number of a psychotherapist?” Only 17% of respondents affirmed being given the name and number of a psychotherapist while 44% reported being told “find a therapist” and 39% said “no.” That was the sorry state of PNES diagnosis/psychotherapy referrals a few years ago and that was when “psychogenic” was part of the presenting diagnosis!
With the new terminology, the omission of a proper referral becomes even easier. After all, if nothing “psychogenic” has been mentioned, bringing up psychotherapy might even seem awkward. At best, the patient may be vaguely advised to “consider therapy.” More likely, no recommendation will be given at all—unless, of course, the patient has co-occurring motor FND symptoms, in which case physical therapy might be comfortably suggested.
All of the above is even more heartbreaking because right now we are living in the best era yet for treating PNES. At this time, we have at least three empirically validated, PNES-specific psychotherapies:
– Prolonged Exposure (PE) for PNES and PTSD
– Cognitive Behavioral Therapy (CBT) tailored for PNES
– PsychoEd for PNES and PTSD
In randomized controlled trials, these three treatments resulted in significant seizure reduction and improved psychological functioning. And let’s not forget Baslet’s promising tailored Mindfulness -Based Treatment (MBT) in an uncontrolled trial. Furthermore, these treatments typically require only 12–16 sessions! Just 3–4 months can dramatically change patients’ lives by achieving significant reduction or complete seizure freedom.
In sum, the reason that I am pushing for more thoughtful debate before we move full steam ahead with this new name is because we need assurances that this name change is not going to harm patients. We need to know that the EMU staff will have the uncomfortable conversation, explaining the need for tailored CBT, PE, PsychoEd, or MBT, despite presenting them with a “functional” diagnostic term. If this will be the outcome, then call whatever your heart desires, because in the words a patient recently, “Arguing over the name of the condition does nothing to help those of us with it.” Agreed, but let’s make sure that this name change doesn’t lead to helping patients even less.