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Review
. 2018 Mar;59(3):530-543.
doi: 10.1111/epi.14030. Epub 2018 Mar 1.

National Association of Medical Examiners position paper: Recommendations for the investigation and certification of deaths in people with epilepsy

Owen Middleton  1 , Daniel Atherton  2 , Elizabeth Bundock  3 , Elizabeth Donner  4 , Daniel Friedman  5 , Dale Hesdorffer  6 , Heather Jarrell  7 , Aileen McCrillis  8 , Othon J Mena  9 , Mitchel Morey  1 , David Thurman  10 , Niu Tian  11 , Torbjörn Tomson  12   13 , Zian Tseng  14 , Steven White  15 , Cyndi Wright  16 , Orrin Devinsky  5
Affiliations
Review

National Association of Medical Examiners position paper: Recommendations for the investigation and certification of deaths in people with epilepsy

Owen Middleton et al. Epilepsia. 2018 Mar.

Abstract

Sudden unexpected death of an individual with epilepsy can pose a challenge to death investigators, as most deaths are unwitnessed, and the individual is commonly found dead in bed. Anatomic findings (eg, tongue/lip bite) are commonly absent and of varying specificity, thereby limiting the evidence to implicate epilepsy as a cause of or contributor to death. Thus it is likely that death certificates significantly underrepresent the true number of deaths in which epilepsy was a factor. To address this, members of the National Association of Medical Examiners, North American SUDEP Registry, Epilepsy Foundation SUDEP Institute, American Epilepsy Society, and the Centers for Disease Control and Prevention constituted an expert panel to generate evidence-based recommendations for the practice of death investigation and autopsy, toxicological analysis, interpretation of autopsy and toxicology findings, and death certification to improve the precision of death certificate data available for public health surveillance of epilepsy-related deaths. The recommendations provided in this paper are intended to assist medical examiners, coroners, and death investigators when a sudden unexpected death in a person with epilepsy is encountered.

Keywords: autopsy; death investigation; epilepsy; mortality; sudden unexpected death in epilepsy.

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Conflict of interest statement

DISCLOSURE OF CONFLICT OF INTEREST

Orrin Devinsky has received funding from the National Institute of Neurologic Disorders and Stroke for SUDEP Research and serves as the Principal Investigator of the North American SUDEP Registry and Sudden Unexplained Death in Childhood Registry and Research Collaborative. He has received research grants from GW Pharmaceuticals, Zogenix, Novartis, and PTC Therapeutics. He is on the Scientific Advisory Board of Tilray, Empatica, Tevard, and EggRock. Daniel Friedman has served as a consultant to LivaNova on SUDEP-related research. He also serves on the executive committee of the North American SUDEP Registry and on the advisory board of the Epilepsy Foundation’s SUDEP Institute. Dale Hesdorffer receives research funding from the National Institute of Neurological Disorders and Stroke/National Institutes of Health, Epilepsy Study Consortium, and Human Epilepsy Project. David Thurman receives funding from UCB, Inc. Torbjörn Tomson has received speaker’s honoraria to his institution from Eisai, LivaNova, UCB, and Sandoz; honoraria to his institution for advisory boards from UCB and Eisai; and research support from GlaxoSmithKline, UCB, Eisai, Bial, Novartis, Stockholm County Council, and Citizens United for Research in Epilepsy. Zian Tseng receives funding for research from the National Heart, Lung, and Blood Institute/National Institutes of Health and the Centers for Disease Control and Prevention. All other authors report no potential conflicts of interest relevant to this article. We confirm that we have read the Journal’s position on issues involved in ethical publication and affirm that this report is consistent with those guidelines.

The opinions and conclusions of this paper have been reviewed and approved by the NAME Board of Directors and as such are endorsed by the National Association of Medical Examiners. These opinions and positions are based on a consensus of the current literature, knowledge, and prevailing theories on this topic. As scientific knowledge and experience grow and change, the National Association of Medical Examiners reserves the right to revise or update these opinions. The process by which NAME position papers are initiated, written, reviewed, and approved is publically available on the NAME website (www.thename.org). All scientific position papers endorsed by the National Association of Medical Examiners automatically expire five years after publication unless reaffirmed, revised, or retired at or before that time. This work is a product of NAME and as such, was not subjected to Academic Forensic Pathology editorial review. The findings and conclusions in this study are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.

Comment in

References

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