We all recognise that most individuals would probably rather not have a post mortem examination performed on themselves, a relative or friend. It can however, be a valuable source of information to society and the medical profession but most importantly to those close to the deceased.

Historically, many sudden deaths occurring in people with epilepsy were attributed by the certifying doctor as being a consequence of choking on vomit or other asphyxial processes. It is now recognised that this is not necessarily the case. The term SUDEP recognises that these deaths can fit a pattern but the exact cause or mechanism of the death is uncertain.

There are no diagnostic features of a SUDEP death; the diagnosis requires exclusion of any other potential cause of death, in association with a typical history and circumstances of the death. Thus a full post mortem examination including toxicology and histology is essential to identify any other natural disease, intoxication or trauma. Deaths could wrongly be attributed to epilepsy when there is another natural disease e.g. cerebral haemorrhage, or drug overdose. Studies have also shown that a neuropathological examination of the brain can provide additional information.

It is important that these deaths are properly investigated to establish the true incidence of SUDEP deaths and to document the findings. The recent National Sentinel Audit of Epilepsy-Related Deaths (Hanna 2002) in the UK sadly identified that there were still many deficiencies in the quality of the examination and in the manner in which the deaths were certified.

The majority of the deaths will undergo a medico-legal post mortem examination, on the instructions of the relevant authority, to determine the cause of death. This should include the retention of small pieces of major organs for processing into histological blocks and slides. It may also involve retention of the brain but pathologists have adapted practice such that a neuropathology opinion can often be obtained either by sampling at the time of the examination or after short fixation and return of the brain before the funeral. In many countries the recent controversy and concerns regarding organ retention have led to changes in the law. Relatives will now be informed of any organ retention. In the UK any research on organs or tissues will now be illegal without the explicit, fully informed consent of the next of kin.

The post mortem examination may provide answers that can help in the grieving process. I am aware from speaking to relatives and support groups that feelings of guilt are not uncommon. For example, if a death is certified as due to inhalation of vomit or asphyxia this may imply that it was preventable. The medical profession must recognise that such a conclusion requires incontrovertible evidence. The mere presence of food in the airways is meaningless (it can occur after death); a histologically proven vital response is required. Similarly petechial haemorrhages within hypostasis in someone found face down is of no diagnostic value. Recognition that these deaths are sudden and unexpected can alone provide some comfort – the carer could not have altered the outcome.

A full post mortem examination will identify any other natural disease or pathology – this may answer some questions and raise others. In some instances a cause for the epilepsy may be identifiable e.g. traumatic injury or a genetic disease, the latter uncommon but of considerable importance to a family. The pathologist may find another potential cause for the death e.g. ischaemic heart disease. The information available regarding the circumstances of the death may then allow the pathologist to assess whether this, rather than epilepsy, is the likely cause of death.

Written By: Marjorie Black
Forensic Medicine and Science, University of Glasgow, Scotland

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