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Reader Response: Challenges to Brain Death in Revising the Uniform Determination of Death Act: The UDDA Revision Series
... These inconsistencies result in unequal treatment of patients based on geographical location, affecting their legal status and eligibility for organ donation. Furthermore, international standards for BD/DNC vary widely, further complicating the definition and acceptance of brain death [1][2][3][4][5][6][7][8][9][10]. ...
... Additional confirmatory tests, such as cerebral blood flow studies or electroencephalography, may be used when inconclusive clinical exams. However, discrepancies exist in how these tests are applied across jurisdictions, contributing to ethical and legal uncertainties [6,[11][12][13]. ...
The determination of brain death/death by neurological criteria (BD/DNC) is a critical medical and legal process. The Uniform Determination of Death Act (UDDA) provides a legal framework, yet significant state-bystate inconsistencies persist in its interpretation and implementation. These disparities create ethical concerns related to justice, patient autonomy, informed consent, and public trust in medical determinations of death.
This paper argues for urgently harmonizing BD/DNC criteria across the United States and globally to uphold ethical medical practice, ensure consistency in end-of-life care, and preserve public confidence in the organ donation system.
Ethical considerations are examined, including fairness in healthcare access, respect for religious and cultural beliefs, and the implications for organ procurement policies. The call for national and international standardization aligns with bioethical principles and medical best practices, aiming to reinforce ethical and legal integrity in BD/DNC determination.
I read with great interest the recent article by Dr. Shewmon, in which the author argued that the central concept of death is extremely pertinent to the clinical criteria and testing for diagnosing brain death/death by neurologic criteria (BD/DNC). The author also discussed 3 contending concepts of death.1 A fundamental question whether BD/DNC is truly biological death. After cardiac arrest, tissues and cells (excluding bones and related structures) are progressively destroyed because of anoxia and ischemia. This means that for a short period after fatal cardiac arrest, biological death does not yet occur. Therefore, neither cardiorespiratory death nor brain death equates to biological death.2 In a previous article, I proposed the idea that the major critical attribute of human life is consciousness, and that consciousness comprises both arousal and awareness, unlike the higher brain standard of death.3 This critical system is eliminated if the brain is irreversibly damaged; in such cases, even if other subsystems are functioning spontaneously or are sustained by machines, the organismasanindividualentitynolongerexistsassuch.4Thus,abrain-deadpatientwithlong somatic survival5 has lost their main human attributes and the highest level of integration.3 This idea resolves the conflict of accepting the concept of death.
Background:
New controversies have raised on brain death (BD) diagnosis when lesions are localized in the posterior fossa.
Objective:
The aim of this study was to discuss the particularities of BD diagnosis in patients with posterior fossa lesions.
Materials and methods:
The author made a systematic review of literature on this topic.
Results and conclusions:
A supratentorial brain lesion usually produces a rostrocaudal transtentorial brain herniation, resulting in forebrain and brainstem loss of function. In secondary brain lesions (i.e., cerebral hypoxia), the brainstem is also affected like the forebrain. Nevertheless, some cases complaining posterior fossa lesions (i.e., basilar artery thrombotic infarcts, or hemorrhages of the brainstem and/or cerebellum) may retain intracranial blood flow and EEG activity. In this article, I discuss that if a posterior fossa lesion does not produce an enormous increment of intracranial pressure, a complete intracranial circulatory arrest does not occur, explaining the preservation of EEG activity, evoked potentials, and autonomic function. I also addressed Jahi McMath, who was declared braindead, but ancillary tests, performed 9 months after initial brain insult, showed conservation of intracranial structures, EEG activity, and autonomic reactivity to "Mother Talks" stimulus, rejecting the diagnosis of BD. Jahi McMath's MRI study demonstrated a huge lesion in the pons. Some authors have argued that in patients with primary brainstem lesions it might be possible to find in some cases partial recovery of consciousness, even fulfilling clinical BD criteria. This was the case in Jahi McMath.
In this paper, I review the case of Jahi McMath, who was diagnosed with brain death (BD). Nonetheless, ancillary tests performed nine months after the initial brain insult showed conservation of intracranial structures, EEG activity, and autonomic reactivity to the “Mother Talks” stimulus. She was clinically in an unarousable and unresponsive state, without evidence of self-awareness or awareness of the environment. However, the total absence of brainstem reflexes and partial responsiveness rejected the possibility of a coma. Jahi did not have uws because she was not in a wakefulness state and showed partial responsiveness. She could not be classified as a LIS patient either because LIS patients are wakeful and aware, and although quadriplegic, they fully or partially preserve brainstem reflexes, vertical eye movements or blinking, and respire on their own. She was not in an MCS because she did not preserve arousal and preserved awareness only partially. The CRS-R resulted in a very low score, incompatible with MCS patients. mcs patients fully or partially preserve brainstem reflexes and usually breathe on their own. MCS has always been described as a transitional state between a coma and UWS but never reported in a patient with all clinical BD findings. This case does not contradict the concept of BD but brings again the need to use ancillary tests in BD up for discussion. I concluded that Jahi represented a new disorder of consciousness, non-previously described, which I have termed “reponsive unawakefulness syndrome” (RUS).
In this paper, I reviewed the case of Jahi McMath who was diagnosed as being in brain death (BD). Nonetheless, ancillary tests, performed 9 months after initial brain insult, showed conservation of intracranial structures, EEG activity, and autonomic reactivity to “Mother Talks” stimulus. She was clinically in a state of unarousable and unresponsiveness, without evidence of awareness of self or environment, but full absence of brainstem reflexes, and partial responsiveness rejected the possibility of being in coma. Jahi was not a UWS, because she was not in a wakefulness state, and showed partial responsiveness. LIS patients are wakeful and aware, and although these cases are quadriplegic, they fully or partially preserve brainstem reflexes, vertical eye movements, and/or blinking, and respire by their own, rejecting the possibility of classifying her as a LIS patient. She was not a MCS because she did not preserve arousal, and only partially preserved awareness. The CRS-R resulted in a very low score, not corresponding with MCS patients. MCS patients fully or partially preserve brainstem reflexes, and usually breathe by their own. MCS has been always described as a transitional state between coma, UWS, but MCS has never been reported in a patient who has all clinical BD findings. This case doesn’t contradict the concept of BD, but brings again to discussion the needs of using ancillary tests in BD. I concluded that Jahi represented a new state of disorder of consciousness, non-previously described, that I have termed: “responsive unawake syndrome” (RUS).
McGee and Gardiner has published an interesting article about the differences of legal challenges to the concept of brain death (BD) in the USA, Canada and the UK.[1]
During the last decades, three main brain-oriented formulations of death have been discussed: whole brain, brainstem death and higher brain standards.[2-5]. James Bernat claimed that “the formulation of whole-brain death provides the most congruent map for our correct understanding of the concept of death”.[6] This author argued that ”.[7] Bernat and his colleagues’ view about the defence of the whole-brain formulation of death was cited by the United States President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioural Research as the conceptual basis of BD.[5,8,9] President's Commission recommended the adoption by all US states of the Uniform Determination of Death Act (UDDA).[10,11]
Christopher Pallis articulated the brainstem death view which dismissed the use of EEG or CBF studies as confirmatory tests in BD diagnosis.[12,13] According to McGee and Gardiner,[1] the legal position in the UK is relatively well settled, because the historic Royal Colleges’ Code of Practice, as providing the accepted medical standard for declaring death in the UK.[14] The recognized standard for defining death is death: “the irreversible loss of the capacity for consciousness, combined with irreversible loss of the capacity to breathe and therefore irreversible cessation of the integrative function of the brainstem”.[12-14]
The conceptual and practical difference in BD determination between the USA and UK has been known as the "transatlantic divide" in BD determination. [15]
A critical condition for this controversy is when intracranial pathology is localized to the posterior fossa. Both intracranial blood flow and EEG may persist when a primary-brainstem catastrophe that does not produce markedly raised intracranial pressure is present. [16-19]
Varela et al. recently analysed three cases out of 161 who met inclusion criteria (1.9% of all brain deaths during this period), adding a patient from another hospital.[18] All four patients suffered from catastrophic posterior fossa injuries, and therefore fulfilled the UK BD clinical criteria, including the apnoea test. Those 4 patients showed preservation of supratentorial blood flow, which disappeared after a period of 2 to 6 days, allowing then BD declaration, according to the whole brain criteria, adopted in USA. These authors concluded that patients with primary posterior fossa catastrophic lesions who clinically seemed to be brain-dead according to USA BD criteria would typically evolve from retaining to losing supratentorial blood flow. Therefore, the authors affirmed that if CBF assessment is used as an ancillary test, providing an additional criterion for the declaration of BD, those patients are not different than those who become BD due to supratentorial lesions.
Nonetheless, the challenge of the aforementioned cases focuses on determining when the patients were brain-dead according to US or UK BD criteria. According to UK guidelines, patients were brain-dead after the first clinical evaluation but after 6 days all 4 patients were brain-dead according to US guidelines.[20-23]
Therefore, in primary brainstem or cerebellar lesions, under the whole-brain formulation, several BD guidelines have stipulated that ancillary electrical and/or blood flow tests are needed to confirm BD diagnosis.[3,20,24-28]
I agree with the Bernat et al, [5,8,9] regarding that irreversible cessation of functions of the whole brain is BD, and means death of the individual, because the “brain is responsible for the functioning of the organism as a whole”.
McGee and Gardiner also emphasize on the case of Jahi McMath as a reason for BD diagnosis controversies,[1] but this is other story.[20-22]
I was able to study Jahi McMath using ancillary tests, 9 months after her initial diagnosis. I did not have access to her initial clinical history.[20-23]
Preservation of intracranial structures, both in the brainstem and cerebral hemispheres was documented by MRI, nine months after a cardiac arrest, in spite of vast brain injury. Conceptually, a brain-dead patient has a complete absence of intracranial cerebral blood flow. Hence, this contradicts a BD diagnosis in Jahi.
True EEG was found in this case over 2 μV of amplitude. Moreover, the power spectra analysis showed predominant activity within the delta-theta range. EEG may persist in posterior fossa catastrophes, not producing raised intracranial pressure. Jahi presented a huge lesion at the pons, extending to the medulla.
All heart rate variability (HRV) bands were preserved in this patient. BD has been characterized by the loss of all HRV components. This is a demonstration of autonomic activity conservancy in the medulla, within vagal, and other autonomic central nuclei. Another significant finding was the autonomic reactivity, assessed by HRV, to “Mother Talks” stimulation, demonstrating remaining function at different levels of the central autonomic system. These results might explain the video findings reported by Dr. Shewmon, who observed Jahi’s movements that he interpreted as responses to commands.
Jahi McMath was not in coma, because although she showed a sleep-like state of unarousable, unresponsiveness without evidence of awareness of self or environment; her clinical examination showed a complete absence of brain-stem reflexes and no spontaneous drive to breath (apnoea). This patient was not in either an unresponsive wakefulness syndrome (UWS) or in a minimally conscious state (MCS) state. The reason is that she had not shown intermittent wakefulness manifested by the presence of sleep-wake cycles or variably preserved cranial-nerve. Moreover, usually UWS patients can breathe on their own, without mechanical ventilation. The possibility of being in a MCS and/or MCS emergent states is excluded, because these patients show, upon clinical examination, recovery of cognitive functions.[20-22]
Therefore, when I examined her ancillary tests, she was not brain-dead. Therefore, I claimed that this is a new state of disorder of consciousness non-previously classified.[22]
The Uniform Determination of Death Act (UDDA), the recommended legal statute for determination of death in the United States, was initially formulated in 1981. Forty years later, because of the concerns of experts in medicine, law, ethics, and philosophy, the Uniform Law Commission (ULC) created a drafting committee to update the UDDA. The drafting committee, which has until 2023 to propose revisions to the ULC Executive Committee, will need to determine how to address the following key questions about the UDDA: (1) Should the term “irreversible” be replaced by the term “permanent”? (2) Is absence of hypothalamic-pituitary-axis-induced antidiuretic hormone secretion included in “all functions of the entire brain,” and if so, how can we reconcile the fact that this is not tested in the medical standards for determination of death by neurologic criteria published by the American Academy of Neurology and the Society of Critical Care Medicine, American Academy of Pediatrics, and Child Neurology Society? (3) What are the accepted medical standards for determination of death? (4) Is consent needed to determine death? and (5) How should objections to the use of neurologic criteria to declare death be handled? Once the ULC finalizes revisions to the UDDA, individual states will have the opportunity to decide whether to adopt the revisions in whole or in part. Hopefully, the revised UDDA will provide clarity and consistency about the legal distinction between life and death for physicians, lawyers, and the public at large. The events that led to the formation of the drafting committee and the potential consequences of revising the UDDA are discussed herein.
In 1976, the Royal College of Physicians published neurological criteria of death. The memorandum stated that-after preconditions and exclusion criteria were met-the absence of brainstem function, including apnoea testing, would suffice. In the USA, many experts felt that brain death could be only determined by demonstrating death of the entire brain. In the history of further refinement of UK and USA brain death criteria, one particular period stands out that would bring about an apparent transatlantic divide. On 13 October 1980, the British Broadcasting Corporation aired a programme entitled 'Transplants: Are the Donors Really Dead?' Several United States experts not only disagreed with the United Kingdom criteria, but claimed that patients diagnosed with brain death using United Kingdom criteria could recover. The fallout of this television programme was substantial, as indicated by a media frenzy and a 6-month period of heated correspondence within The Lancet and The British Medical Journal. Members of the Parliament questioned the potential long-term effect on the public's trust in organ transplantation. Given the concerns raised, the British Broadcasting Corporation commissioned a second programme, which was broadcast on 19 February 1981 entitled 'A Question of Life or Death: The Brain Death Debate.' Two panels debated the issues on the accuracy of the electroencephalogram and its place, the absolute need for assessing preconditions before an examination, the problems with recognition of toxins and the feasibility of doing a new prospective study in the United Kingdom, which would follow patients' examination assessed with United Kingdom criteria until cardiac standstill. The positions of the United States and United Kingdom remained diametrically opposed to each other. This article revisits this landmark moment and places it in a wider historical context. In the USA, the focus was not on the brainstem, and the definition of brain death became rapidly infused with terms such as whole brain death (all intracranial structures above the foramen magnum), cerebral death (all supratentorial structures) or higher brain death (cortical structures) virtually synonymous with persistent vegetative state. This review also identifies the fortitude of neurosurgeon Bryan Jennett and neurologist Christopher Pallis by introducing new corroborative data on the diagnosis of brain death and clarifying the United Kingdom position. Both understood that brainstem death was the infratentorial consequence of a supratentorial catastrophe. With the 1995 American Academy of Neurology practice parameters, the differences between the UK and USA brain death determination would become much less apparent.
Brain Death: A Reappraisal. Spinger Science+Bussiness Media, LLC
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Jahi McMath: a new state of disorder of consciousness
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