Deaths in Epilepsy

Abstract

Great opportunities to learn come from mistakes, violations of expectations, and history. All 3 highlight our failure to confront the uncomfortable, to recognize what we would rather not, and, even when we do, to act. In the current issue of JAMA Neurology, the study by Gorton and colleagues 1 exemplifies our progress in defining the epidemiology of premature death in epilepsy and our failure to prevent the most devastating consequence of epilepsy, revealing clinical science and public health in the moral mirror, warts and all.Premature mortality among people with epilepsy was well recognized 150 years ago. A look back reveals mistakes of bias and social prejudice that persist today. Bacon wrote the 1868 Lancet article "On the Modes of Death in Epilepsy" 2 based on asylum populations in England and Wales (the same countries studied by Gorton et al 1 ), in which 15.5% of the 22 557 "incurables" had "primary (unknown or genetic) or secondary (structural, infectious, metabolic, immune)" epilepsy. He cited that in 1864, among a population of roughly 20 million persons, 2406 deaths were due to epilepsy. By contrast, a recent epidemiological study in Sweden 3 examining deaths in 2008 identified 99 sudden unexpected deaths in epilepsy (SUDEP; epilepsy was only mentioned on the death certificate in 62 cases), 77 deaths that were due to "trauma, injury, poisoning, and suicide," and 85 deaths that were due to "respiratory diseases" in a population comprising roughly 9 million people. Many of those deaths would count as epilepsy-associated deaths, yielding an estimate of approximately 3 deaths per 100 000 persons in modern Sweden, whereas Bacon 2 estimated approximately 12 deaths per 100 000 persons in England and Wales 150 years ago. Although epilepsy classification and mortality statistics cannot be equated across these eras, epilepsy was considered a cause of death more frequently in the 1860s than it is today.Bacon 2 focused only on primary epilepsy, observing that deaths were due to long-standing effects of the disease on the body, status epilepticus, and events during a seizure, including SUDEP, suffocation, choking, aspiration, and unintentional injury. It is worth lingering long over Bacon's prescience and wondering how far we have advanced, or not, in addressing mortality in epilepsy. Missing from Bacon's account and most of the subsequent literature on epilepsy mortality is the role of unnatural deaths beyond drowning and motor vehicle crashes.Academic neurology now focuses intensively on SUDEP. This long overdue and well-deserved attention may distract

Epilepsy‐associated death in the Southwestern Ontario: A clinicopathological correlation study

“…Recent updates in SUDEP classification and diagnosis criteria are proposed to capture all SUDEP cases and resolve ambiguities [3,5]. In brief, SUDEP cases are divided into three groups: (1) definite SUDEP, when all investigation and complete postmortem examination (including toxicology) reveal no other cause of death; (2) probable SUDEP, when criteria for definite SUDEP are met but no or limited autopsy (external examination only, extensive decomposition, etc.) is performed; (3) possible SUDEP, when there is competing cause of death.…”

“…Premature mortality among epilepsy patients is well recognized. Patients with epilepsy are at increased risk (threefold) of unnatural death compared to the general population [ 1 , 2 ]. Except for a few identifiable causes of unnatural death, such as drowning, choking, or drug overdose, more than half of the epilepsy‐related death remains unexplained after extensive investigation.…”