D. Alan Shewmon’s research while affiliated with University of California, Los Angeles and other places

When the Uniform Law Commission (ULC) was recently in the process of revising the Uniform Determination of Death Act (UDDA), Neurology® ran a series of debates over certain controversial issues being deliberated. Omitted was a debate over the fundamental concept underlying brain death. In his introductory article, Bernat offered reasons for this omission: "It is not directly relevant to practicing neurologists who largely accept brain death, do not question its conceptual basis, …." In this article I argue the opposite: the fundamental concept of death is highly relevant to the clinical criteria and tests used to diagnose it. Moreover, most neurologists in fact disagree with the conceptual basis articulated by Bernat. Basically, there are 3 competing concepts of death: (1) biological: cessation of the integrative unity of the organism as a whole (endorsed by Bernat and the 1981 President's Commission), (2) psychological: cessation of the person, equated with a self-conscious mind (endorsed by half of neurologists), and (3) the vital work concept proposed by the 2008 President's Council on Bioethics. The first actually corresponds to a circulatory, not a neurologic, criterion. The second corresponds to a "higher brain" criterion. The third corresponds loosely to the UK's "brainstem death" criterion. In terms of the biological concept, current diagnostic guidelines entail a high rate of false-positive declarations of death, whereas in terms of the psychological concept, the same guidelines entail a high rate of false-negative declarations. Brainstem reflexes have nothing to do with any death concept (their role is putatively to guarantee irreversibility). By shining a spotlight on the deficiencies of the UDDA through attempting to revise it, the ULC may have unwittingly opened a Pandora's box of fresh scrutiny of the concept of death underlying the neurologic criterion-particularly on the part of state legislatures with irreconcilably opposed worldviews.

This chapter examines concepts and criteria of death and the coherence of their associations. Concepts of death fall into two broad categories: non-ontological and ontological. Non-ontological concepts include death as a cluster kind and death as a process; the corresponding criteria are stipulative, based on pragmatic concerns. Ontological concepts are essentially either psychological (cessation of “personhood,” equated with capacity for thinking and self-awareness) or biological (cessation of the human organism). The psychological concept corresponds to a “higher brain” criterion, namely irreversible, permanent nonfunction (destruction) of bilateral thalami (the sufficiency of neocortical destruction alone being uncertain); anatomically broader criteria are sufficient but not necessary. The biological concept corresponds to a criterion of irreversible, permanent cessation of circulation of oxygenated blood (irreversible cessation of brain function being necessary but not sufficient). Irreversible apneic unconsciousness is best understood not as a concept of death but as a stipulative criterion. Concepts of life and death and their corresponding criteria derive from fundamental worldviews, on which there has been no consensus for over two millennia, nor is there likely ever to be. Respect for deeply held fundamental worldviews requires allowance for personal specification of circulatory or brain-based criteria.

Brain death (death by neurologic criteria) is declared in 2% of all in-hospital deaths in the United States. Published neuropathology studies of individuals maintained on cardiorespiratory support are generally decades old, and notably include only 3 cases with long intervals between brain and "somatic" death (68 days, 101 days, 20 years). Here, we share our observations in a young woman supported for nearly 4½ years following declaration of brain death after oropharyngeal surgery. While limited by tissue availability and condition, we found evidence of at least partial perfusion of the superficial cerebral and cerebellar cortices by external carotid and vertebral arteries (via meningeal and posterior pharyngeal branches), characterized by focal cellular reaction and organization. Dural venous sinuses had thrombosis and recanalization, as well as iron deposition. In nonperfused brain areas, tissue "mummification," akin to that seen in certain postmortem conditions, including macerated stillbirths and saponification (adipocere formation), was identified, and are reviewed herein. Unfortunately, correlation with years-earlier clinical and radiographic observations was not possible. Nevertheless, we feel that our careful neuropathologic inspection of this case expands the understanding of the spectrum of human brain tissue alterations possible in a very rarely seen set of conditions.

Jahi McMath was diagnosed brain dead on 12/12/2013 in strict accordance with both the pediatric and adult Guidelines, reinforced by 4 isoelectric electroencephalograms and a radionuclide scan showing intracranial circulatory arrest. Her magnetic resonance imaging scan 9 1/2 months later surprisingly showed gross integrity of cortex, basal ganglia, thalamus, and upper brainstem. The greatest damage was in the white matter, which was extensively demyelinated and cystic, and in the lower brainstem, most likely from partial herniation that resolved. The apparent integrity of gray matter and the ascending reticular activating system may have provided a potential structural basis for the reemergence of some limited brain functions, while the white matter and lower brainstem lesions would have caused severe motor disability, brainstem areflexia and apnea. The findings indicate that there could never have been a period of sustained intracranial circulatory arrest. Rather, at the time of brain death diagnosis, low blood flow below the detection threshold of the radionuclide scan was sufficient to maintain widespread neuronal viability, though insufficient to support synaptic function. Her case represents the first indirect confirmation of the reality and clinical relevance of global ischemic penumbra, hypothesized in 1999 as a generally unacknowledged and possibly common brain death mimic.

Jahi McMath was a 13-year-old girl who was declared brain dead on December 12, 2013, after a hemorrhagic complication following complex oropharyngeal surgery. Her case gained international attention as her mother fought a legal battle to keep her on life support. Upon issuance of a death certificate shortly after the declaration of brain death, Jahi was transferred from California to New Jersey, where the law includes a religious exemption from the neurologic determination of death. There she became statutorily resurrected and was treated as a comatose, living patient for the next four and a half years. During that time, she underwent menarche and other aspects of puberty and developed intermittent responsiveness to commands, documented by eyewitness attestations and multiple home videos. Jahi died on June 18, 2018, from abdominal complications. This article summarizes her clinical history over those intervening years, taken directly from her medical records and personal observation. Her case represents an instance of a false-positive diagnosis of brain death, unquestionably made according to both the pediatric and adult guidelines, reinforced by four false-positive EEGs and a false-positive radionuclide blood flow test. The bioethical consequences of a nonnegligible risk of false-positive declaration of death are profound.