A survey of medical examiner death certification of vignettes on death in epilepsy: Gaps in identifying SUDEP

- Lack of standardized terminology on death certificates of SUDEP cases presents a challenge for researchers interested in studying SUDEP.
- ICD-10 codes G40.9 or R56.8 would identify less than half of cases in a survey of SUDEP-type deaths certified by medical examiners.
- The complicated nature of SUDEP and lack of familiarity by relatives may contribute to variations in terms used in death certification.
- Professional collaboration could help develop a uniform strategy to death certification in SUDEP.

ObjectiveLack of standardized terminology on death certificates (DCs) of SUDEP type cases may obscure the presence of epilepsy in these deaths. Most DCs for individuals dying unexpectedly with epilepsy are certified by medical examiners (MEs). The purpose of this study was to gauge death certification practices of MEs when interpreting SUDEP cases and assess implications for valid surveillance of SUDEP.Materials and methodsA survey consisting of clinical vignettes describing deaths in individuals with epilepsy was sent to medical examiners. Respondents were asked to indicate how they would certify death on a DC. Similar text responses were aggregated and coded according to the 10th revision of the International Statistical Classification of Diseases and Related Health Problems (ICD-10) coding system.ResultsA total of 847 responses on 11 cases were received. Depending upon the vignette, the proportion of responses within each case that did not have an ICD-10 seizure code ranged from 3% to 62%. G40.9 (Epilepsy, unspecified) resulted from 43% of responses, and R56.8 (Other and unspecified convulsion) resulted from 38% of responses.ConclusionThe survey indicates that a high proportion of DCs do not have a seizure code and would not be identified utilizing these ICD-10 codes. The complicated nature of deaths in SUDEP, unclear circumstances surrounding a given death, and the lack of familiarity with SUDEP by surviving relatives may all contribute to variable terminology used to certify SUDEP deaths. Our results emphasize the need for collaboration between neurologists and forensic pathologists to develop a more uniform approach to death certification in SUDEP that will facilitate SUDEP research and inform relatives of individuals who die of SUDEP.