Epilepsy has long been recognised and invoked as a significant ingredient in the mechanism of sudden unexpected death, particularly in the setting of status seizures, trauma, drownings and aspiration of gastric content. However, a wider appreciation that epilepsy per se may be a major cause of, rather than contributory factor to death, is a relatively recent concept which may not be widely comprehended or accepted by the community at large, epileptic patients and their physicians, and perhaps some pathologists. Since these cases present as sudden, unexpected and often unexplained death, they will fall under the jurisdiction of the coroner, and in most circumstances require specialist forensic pathological investigation.

Like that other acronym SIDS (sudden infant death syndrome), the term SUDEP hints at a relatively stereotypical series of circumstances allied to an unascertained cause of death; but unlike SIDS (or perhaps the more controversial SADS (sudden adult death syndrome)), the field of potential causative mechanisms appears narrower and is arguably better delineated, holding the promise of effective intervention strategies.

Much research over the past few years has pointed to complex cerebral and cardiorespiratory factors, which individually or in concert may result in death during or shortly after a seizure. If the task of clinicians is to predict and intervene, the role of the forensic pathologist and coroner might best be seen as recognition and comprehensive investigation so that the true incidence (at various points in time) is documented, and effective multidisciplinary remedies implemented. A vital first step along this path is uniformity of approach, but many factors need to be addressed before this pathological nirvana is attained, some of which may be subject to considerable regional and situational constraints:

• A full appreciation and documentation of the circumstances surrounding the death including a comprehensive medical and medication history, and details of death scene examination by a knowledgeable investigator (including position and attitude of body, details of scene disturbance, witness statements etc). Also required are further enquiries when the Police Report is inadequate, ready and timely access to medical records when necessary, consultation with clinicians if ECG or EEG available, and consideration and investigation of possible epilepsy in the unascertained autopsy.

• A full and thorough autopsy examination including recording stigmata suggestive of epilepsy (e.g. tuberous sclerosis, gum hypertrophy, unusual scalp or facial scars), asphxyial signs, and factors that may indicate a recent seizure (oral injuries, urinary or faecal incontinence, collapse injuries etc).

• Consideration given to examination of the cardiac conduction system.

• Consideration given to retention of the brain for formal neuropathological examination and alternate strategies for enhancing brain examination when permission for retention is denied.

• Full toxicological analysis, (including antiepileptic medications and vitreous biochemistry).

• Uniformity of approach in formulation of cause of death (rationalisation of the terms Epilepsy, SUDEP, Unascertained, Sudden Adult Death Syndrome, Suggestive of (or Probable) Epilepsy, Seizure, Status Epilepticus).

• Adopting a rational and consistent approach to certification when significant co-pathology exists.

• Implementing mechanisms for accurate retrieval of data and dissemination of information to families, physicians, and interested parties.

• Developing lines of communication with epilepsy bereavement services and epileptologists.

Written by: Noel W.F. Woodford & Matthew Lynch
Victorian Institute of Forensic Medicine, Australia

Reprinted with the permission of Epilepsy Australia-the national coalition of Australia epilepsy associations and Epilepsy Bereaved UK.