Half Someone Else's: Discourse and Trauma in the PNES Patient

Abstract

This article is about patients suffering from Psychogenic Nonepileptic Seizures (PNES), and the way they talk about their seizures. In terms of founding questions, data, and insight, it owes a tremendous intellectual debt to the “Listening to People with Seizures” project at the University of Sheffield, UK. The PNES diagnosis is notoriously difficult to make. Taking patients at their word is a general principle of medical ethics. But it is particularly urgent in the case of PNES patients, whom physicians have been shown to markedly distrust and for whom the physician-patient relationship can easily erode (Decoster 2010; Kanaan, Armstrong, Barnes and Wessely 2009; Kinetz 2006; Plug and Reuber 2009; Shneker and Elliott 2008). One of the consequences of that erosion is that PNES patients fail to get the treatment they need. My interpretation encourages us to look more closely at the natural history of traumatic experience and that of seizure. More immediately, it suggests that healthcare professionals are wrong to treat PNES’ modes of discourse as merely manipulative. They have a responsibility to regard them as particular symptoms of the PNES disorder, not only because work like LTPWS has demonstrated patient history as a robust diagnostic tool, but because listening to these patients may tell us something about disease etiology. By failing to do so, they do these patients a disservice.

Keywords:

• Language
• Professional Ethics

Acknowledgments

I owe a debt to Dr. Paul Ford, who has been an adviser and reader for this project and to “Brain Matters 3” International Neuroethics Conference, October 23–25, 2012 and the 21st International Epilepsy Symposia at the Cleveland Clinic, where this material was first presented as a set of observations in poster form. Anyone who knows Dr. Rita Charon's work will recognize that this article takes great intellectual inspiration from “Narrative Medicine.” I have included her work in the references, but the influence is as implicit as it is foundational.

Ms. Boehm is currently an unaffiliated independent scholar. She will be a first-year medical student in August 2013.

Notes

I have drawn on my experiences as an emergency room scribe to generate these descriptions from fragments of language used by real patients. However, these are amalgamations of patients and experiences. The importance of my analysis depends on the specific use of phrases, terms, modifiers, and adjectives; these remain intact. All efforts have been made to make sure no one situation discloses a patient's identity or confidential information.