Even the dead are not terminally ill anymore

The brain death debate is now 30 years old. Ever since the Harvard Ad Hoc criteria for brain death were published in August 1968, and the proposal was first made that the clinical diagnosis of brain death constituted the legal death of a human being (brain death as death), the brain death controversy has continued.¹ However, except for a few unresolved issues, there has been a surprising degree of consensus on the major medical and legal aspects of this subject. One reason for this consensus has been the numerous sets of clinical criteria published by medical, pediatric, neurologic, and neurosurgical organizations in the United States and other countries. Even though these criteria varied somewhat in the clinical features essential to the diagnosis of brain death, the positions of these medical societies strongly supported the view that brain death was a highly reliable diagnosis in most cases.² In the 1970s, when lawmakers were first involved in enacting statutory legislation equating brain death with death, they were informed by physicians that brain death was a medical syndrome that could be diagnosed with an extraordinarily high degree of certainty within hours or days after injury to the brain, and that brain death could be reliably distinguished at the bedside from other syndromes of severe brain damage, such as coma with some residual brainstem functions, the permanent vegetative state, and the locked-in syndrome.³ Kansas in 1970 and all states by the early 1990s had enacted statutory legislation or case law legalizing brain death as death.

Even though brain death has become accepted by the medical and legal communities over the last three decades, one of the major ongoing sources of controversy, at least in the minds of some scholars, has been the underlying philosophical-legal rationale as to why brain death should be considered equivalent to cardiorespiratory death as the death of a human being.⁴ One strong argument has been the medical view that the loss of all functions of the brain will inevitably lead to the loss of somatic integrative unity of the human organism (the somatic disintegration hypothesis). In other words, when the brain stops functioning, the vital functions of heartbeat and circulation will inevitably fail in a short period of time, regardless of aggressive treatment to sustain these vital functions. This somatic disintegration rationale proposed by clinicians was accepted by lawmakers and judges as a cornerstone of the legal basis for brain death as death.

Alan Shewmon, MD, in this issue of Neurology, has accumulated convincing data that, among other things, undermine this somatic disintegration hypothesis.⁵ Through his personal observations and those of other professionals, collection of articles from various sources, and systematic database searches, Shewmon found 175 cases of brain dead patients with "survival" times (sustained functions of heartbeat and circulation) of at least 1 week. In 56 of these cases there was sufficient reliable information for in-depth analysis of some clinical characteristics; age, etiology, and the terminal event (either treatment withdrawal or spontaneous cardiac arrest). Of these 56 cases subjected to analysis, 17 survived over 2 months, 7 over 6 months, and 4 over 1 year. Dr. Shewmon explores the various medical factors that could possibly account for these remarkable examples of prolonged survival.

Assuming the study data are valid, the article has important implications for the neurologist. The article documents and verifies the suspicion that some neurologists have experienced in the diagnosis of brain death: to some extent, the relation between brain death and survival time is a self-fulfilling prophecy. The prediction that brain dead patients will inevitably have a cardiac arrest within hours or days is not necessarily accurate. With advances in technology, we can keep patients "alive" for indefinite periods, even the "dead." Not only can we keep "terminally" ill patients alive for over 6 months (one definition of terminal illness), even the "dead" (brain dead patients) are not terminally ill anymore-if medicine were to advocate the unwise and inhumane policy of maintaining maximal treatment in brain dead patients until the point of refractory cardiac arrest.

It is impossible to know with certainty the extent of prolonged survival in brain death because a systematic clinical study in which the cardiac and circulatory functions are sustained for prolonged periods (weeks, months, or years) in a large number of patients is morally indefensible, extraordinarily expensive in terms of money and resources of manpower and intensive care unit beds, and legally prohibitive. Shewmon's article and the extensive case documentation, along with thoughtful concerns raised by scholars in recent years, create serious questions about the validity of the somatic disintegration basis for brain death as death and justify continued exploration of the issue.^6,7 From a practical standpoint, we can not turn back the clock on the sensible medical and legal policies developed over the last 30 years. Brain death, both as a medical syndrome and a legal reality, is both well-accepted and valid. In the final analysis, Shewmon's article will not undermine the medical and legal doctrine of brain death as the death of a human being. However, understanding the existing arguments of the legal basis for death, whether valid or not, may have implications for other moral and legal controversies where consensus does not yet exist: the higher brain formulation of death, the legal and donor status of infants with anencephaly, and the non-heart-beating donor programs in major organ transplant centers.^8-10