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Sudden Unexplained Death in Epilepsy: What Coroners and Medical Examiners Aren’t Saying
Traditionally a controversial topic discussed primarily by the neurological community, sudden unexplained death in epilepsy (SUDEP) is now emerging more frequently in research literature, adding weight and validity to this once questionable entity. However, the forensic science field has quite a ways to go before it both recognizes and utilizes SUDEP as a final post mortem diagnosis in cases where it is appropriate.
Paul Schraeder M.D. and colleagues recently conducted a study in which they sent a questionnaire to 2995 coroners (COs) and medical examiners (MEs) in urban, suburban, and rural jurisdictions in the United States. Their aim was to assess the practice of COs and MEs in the United States in documenting SUDEP in death certificates. Of the 2995 surveys sent, 80.7 % (2418) were sent to COs and 19.3 % (577) to MEs. However, the response rate was 15.9 % (384) for the COs and 21.8 % (126) for MEs.
“I think the reason more MEs responded even though more COs were sent questionnaires is that COs are non-medical officials, so there is a quite a difference in educational backgrounds and therefore I would surmise that COs did not have as much interest in this survey based on its medically-oriented focus. Also, many COs are located in relatively unpopulated areas such as rural areas where they may not be exposed to many incidents of SUDEP,” said Schraeder in an interview with epilepsy.com.
What is a Coroner? A coroner is an elected legal official who investigates and certifies deaths. They are often employed part-time, serve smaller cities, towns and rural areas and are not medically trained.
What is a Medical Examiner? A medical examiner is a physician/official who works with law enforcement officials to determine cause and manner of death. A majority of MEs are pathologists who are employed full time to serve larger populations.
Schraeder’s speculation is grounded not only in opinion, but also based upon the data he collected. In the study he found 1a significant difference in educational backgrounds between the responding COs and MES in that the MEs were more likely to have a pathologist or non-pathologist MD background (92% of MEs versus 26.5 % of COs). Most respondents who were trained as pathologists (83.5%) recognized SUDEP as a valid post-mortem diagnosis, whereas the percentage of non-pathologist physicians and non-medically trained respondents acknowledging the validity of SUDEP as a post-mortem diagnosis was much lower (63 and 58%, respectively). Findings from the study also showed, that despite the high rate of acknowledgement of SUDEP as a valid diagnosis, both COs and MEs have a low rate of using SUDEP as a final diagnosis in death certificates when the diagnosis is appropriate. Comparison of urban and non-urban settings and title of CO versus ME did not yield any difference in the odds of respondents actually using SUDEP as a final diagnosis. Schraeder links the infrequent use of SUDEP as a post mortem diagnosis amongst COs and MEs to the variability in the way they usually indicate the cause of death of persons with a diagnosis of epilepsy. The cause of death in likely cases if SUDEP is often attributed to status epilepticus, respiratory failure, fatal seizure, or cardiac arrhythmia.
According to Chief Medical Examiner of the State of New Mexico, Ross Zumwalt, M.D., “Forensic pathologists are well-versed in using epilepsy as a cause of death. They are not however, used to using the term SUDEP. It’s really more of a terminology thing that just hasn’t caught on”, he said. Zumwalt also asserted that MEs are trained to look at the underlying cause of death and are more likely to use the diagnosis of idiopathic seizure disorder than a term that implies uncertainty of cause.
“In the case of Sudden Infant Death Syndrome (SIDS), for example, there has been a lot of controversy amongst pathologists who feel that if the cause of the syndrome is unexplained or undetermined then why not write down undetermined versus writing down SIDS as the final post mortem diagnosis?”, said Zumwalt.
Zumwalt encourages the neurological community to address the two main forensic science organizations - the National Association of Medical Examiners and the American Academy of Forensic Sciences - if they believe the term SUDEP should be canonized as a formal post-mortem diagnosis.
Meanwhile, Schraeder asserts that insights gained from this study about how COs and MEs approach the diagnosis of cause of death in persons with epilepsy will be useful in planning educational programs for COs and MEs for improving the accuracy of final diagnoses.
“One of the main goals of such programs should be to increase awareness that SUDEP is one of the most common causes of death in epilepsy and that it should not be avoided as a final diagnosis. Any educational program, including continuing medical education activities, internet-based information, and written materials directed at COs and MEs, should focus on the accuracy of data on death certificates”, concluded Schraeder.
To learn more about SUDEP go to:www.epilepsy.com/epilepsy/sudep_epilepsy.html
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