Faculty Bibliography

This position statement provides updated member guidance from the American Academy of Neurology (AAN) regarding (1) communication with surrogate decision makers about brain death/death by neurologic criteria (BD/DNC), (2) management of surrogate decision-maker objections to BD/DNC, (3) the ethical considerations associated with BD/DNC determination in a pregnant person, and (4) enhancing public trust in BD/DNC. This position statement is intended to complement recommendations in the 2023 "Pediatric and Adult Brain Death/Death by Neurologic Criteria Consensus Guideline" published by the AAN, American Academy of Pediatrics, Child Neurology Society, and Society of Critical Care Medicine, as well as the 2021 AAN Code of Professional Conduct. It replaces the 2019 AAN position statement, "Brain death, the determination of brain death, and member guidance for brain death accommodation requests."

INTRODUCTION/BACKGROUND:The Curing Coma Campaign Ethics Working Group sought to understand informed consent practices for research involving persons with disorders of consciousness (DoC) to establish an empirical foundation to formulate common consent elements for research regarding this vulnerable population. METHODS:Consent forms for research involving persons with DoC were collected from the Curing Coma Campaign members and Clinicaltrials.gov in the fall of 2024. We abstracted data about study specifics, the consent process, and unique considerations related to persons with DoC and then reviewed and collated them using descriptive statistics. RESULTS:The collection process yielded 58 consent forms: 40 (69%) from member submissions and 18 (31%) from Clinicaltrials.gov. After excluding duplicates and studies that did not pertain to persons with DoC, there were 43 forms, which included 62 unique terms to describe acute brain injury/consciousness/DoC. Of 41 studies that enrolled persons with DoC, there were 4 (10%) that mentioned an evaluation for covert consciousness. Although only 3 (7%) forms mentioned an evaluation for capacity of the person with DoC/recovered from DoC, 16 (39%) referenced first-person consent if the person with DoC regained capacity. Most studies that involved study-specific medications/interventions/tests included some mention of experiential risks (26/32, 81%), but only 2 (6%) specifically addressed the challenges associated with these risks in a person with DoC. CONCLUSIONS:Consent forms for research involving persons with DoC include inconsistent terminology to describe acute brain injury/consciousness/DoC, the capacity to consent, and the potential experiential risks of study participation in the context of a DoC. There are opportunities to improve transparency and consistency of communication about research involving persons with DoC via creation of common consent elements to ensure the informed consent process protects individual autonomy.

OBJECTIVE/UNASSIGNED:The authors sought to determine the relationships among cognitive impairment, psychiatric outcome, and functional status 3 months after a hemorrhagic stroke. METHODS/UNASSIGNED:Patients with nontraumatic intracerebral hemorrhage (ICH) or subarachnoid hemorrhage (SAH) were assessed by telephone 3 months after discharge by using the Quality of Life in Neurological Disorders (Neuro-QoL) cognitive function, anxiety, depression, and sleep disturbance short forms, as well as the modified Rankin Scale (mRS). The relationships between poor cognition (Neuro-QoL T score≤50), functional status, and psychiatric outcome among patients with ICH or SAH and patients with ICH only were evaluated. RESULTS/UNASSIGNED:Of 101 patients (N=62 with ICH and N=39 with SAH), 51% had poor cognition 3 months posthemorrhage, with 61% having mRS scores of 3-5, 43% having anxiety, 28% having depression, and 31% having sleep disturbance. Univariate analysis of the full cohort indicated that poor cognition was significantly associated with anxiety, depression, sleep disturbance, and mRS scores of 3-5 (p<0.05). Multivariate analysis revealed that poor cognition was significantly associated with anxiety (OR=4.38, 95% CI=1.30-14.74, p=0.017) and mRS scores of 3-5 (OR=6.15, 95% CI=1.96-19.32, p=0.002). Univariate analysis of the 62 patients with ICH indicated that poor cognition was significantly associated with anxiety, sleep disturbance, and mRS scores of 3-5 (p<0.05). Multivariate analysis revealed that poor cognition was significantly associated with anxiety (OR=10.98, 95% CI=2.32-51.99, p=0.003). CONCLUSIONS/UNASSIGNED:Poor cognition was associated with anxiety 3 months after hemorrhagic stroke. Additional research is needed to understand whether treatment for anxiety would improve cognition in this population.

State death determination acts require brain death/death by neurologic criteria (BD/DNC) determination to be in accordance with "accepted medical standards." The American Academy of Neurology/American Academy of Pediatrics/Child Neurology Society/Society of Critical Care Medicine published updated BD/DNC guidelines in October 2023 to replace earlier iterations of separate guidelines for BD/DNC determination in adults and pediatric persons. There are no other medical society guidelines for BD/DNC determination in the United States. As of early 2024, only Nevada, New Jersey, and New York identified the 2023 BD/DNC guidelines as the "accepted medical standards." Delineation of the "accepted medical standards" in state death determination acts or by state health organizations (SHOs) could help facilitate consistency and accuracy in BD/DNC determination, prevent false-positive death determination, and promote public trust. SHOs are comprised of policy experts and medical professionals responsible for addressing medical, ethical, and legislative problems related to health. In April 2024, we began iteratively contacting state health departments, medical boards, medical societies, and hospital associations requesting acknowledgment of the 2023 BD/DNC guidelines as the "accepted medical standards." From April 2024 to March 2025, we contacted 168 SHOs and received responses from 108 of 168 (64%, median: 2 per state, range: 0-4 per state). The effects of this advocacy effort continue to evolve, but as of March 31, 2025, 4 states had an SHO that acknowledged the 2023 BD/DNC guidelines as the "accepted medical standards" (Delaware, Louisiana, Oklahoma, and Vermont), 9 states had an SHO discussing acknowledgment, 4 states had an SHO that would consider a resolution submitted by a member about acknowledgment, and 30 states showed no SHO interest in acknowledgment. The Medical Society of Delaware and the Oklahoma State Medical Association formalized acknowledgment in a resolution while the Louisiana Department of Health and the Vermont Department of Health and Board of Medical Practice disseminated communication about acknowledgment. This effort also prompted discussion about the "accepted medical standards" by the American Medical Association. Ongoing advocacy may expand recognition of the 2023 BD/DNC guidelines as the "accepted medical standards" for BD/DNC determination. Communication to hospitals indicating that adherence to these guidelines is crucial and regulations to ensure adherence are essential.

Brain death, or death by neurologic criteria (BD/DNC), is the permanent loss of brain function, defined by coma with loss of capacity for consciousness and complete brainstem areflexia, including the inability to breathe spontaneously. The 2023 American Academy of Neurology/American Academy of Pediatrics/Child Neurology Society (CNS)/Society for Critical Care Medicine guidelines state that pregnancy is not a contraindication for BD/DNC evaluation. Clinical evaluation of BD/DNC includes an apnea test to demonstrate the absence of spontaneous respiratory effort in response to hypercapnia and acidosis. The safety of apnea testing to the fetus in pregnant patients remains uncertain.We convened a panel of experts in BD/DNC, neurocritical care, maternal-fetal medicine, neonatology, fetal/neonatal/child neurology, and pediatric/fetal anesthesiology to perform a scoping review of apnea testing in pregnant persons. We found no studies directly assessing safety of apnea testing on the fetus. Apnea testing consists of fetal exposure to parental hyperoxia and hypercapnia; therefore, we searched for evidence related to these conditions in pregnancy. Case reports, series, and literature on physiologic changes induced during apnea testing and their potential effects on placental, fetal systemic, and fetal cerebral circulations were identified. In reported cases of BD/DNC in pregnant persons, some authors described explicitly avoiding apnea testing because of safety concerns, but whether apnea testing was performed at all was inconsistently reported. Evidence from studies evaluating hyperoxia and hypercapnia in healthy pregnant persons and in other animal models suggested possible adverse effects caused by reduced uteroplacental blood flow, fetal metabolic acidosis, and hypercapnia-induced cerebral hyperperfusion. Further possible complications of apnea testing, such as hypotension or hypoxemia in pregnant persons, could also contribute to fetal injury. These potential detrimental risks to the fetus raise the question as to whether apnea testing should be deferred if a fetus may be viable. Ancillary tests, such as radionuclide cerebral blood flow imaging or transcranial Doppler ultrasonography, can be used if the remainder of the BD/DNC evaluation and neurologic examination is otherwise consistent with BD/DNC. Further research is essential to assess the physiologic consequences of apnea testing in pregnant persons and potential risks to the fetus.

BACKGROUND:The Uniform Determination of Death Act requires brain death/death by neurologic criteria (BD/DNC) determination to be in accordance with "accepted medical standards." The medical organizations responsible for delineating these guidelines are only specified statutorily in two states. State health organizations (SHOs) are composed of policy experts and medical professionals who are responsible for addressing medical, ethical, and legislative problems related to health. We sought to evaluate information publicly available on SHO websites regarding BD/DNC. METHODS:From December 2023 to August 2024, we searched SHO (health department, medical board, medical society, and hospital association) websites for the 48 states without statutory guidance regarding what constitutes accepted medical standards for information regarding BD/DNC using the terms "brain death," "brain stem," and "determination of death." All posts related to BD/DNC were reviewed and categorized via thematic analysis. RESULTS:Of the 192 SHO websites searched, there were 35 from 28 states that provided information regarding BD/DNC: 14 medical societies, 12 health departments, 8 hospital associations, and 1 medical board. Of these 35 SHOs, 12 referenced the state's legal statute, 11 referenced hospital/state/model policies or guidance, 3 referenced both legal statutes and hospital/state/model policies or guidelines, 3 referenced explicit support for standardized BD/DNC guidelines, and 6 made other mention of BD/DNC. New York was the only state with an SHO that provided clear guidance regarding accepted medical standards for BD/DNC determination. CONCLUSIONS:For most states, the accepted medical standards for BD/DNC determination are not identified on SHO websites or statutorily. This contributes to inconsistencies across hospital BD/DNC determination policies, leading to medical, ethical, and legal challenges. Delineation of the accepted medical standards for BD/DNC determination in each state could help facilitate consistency and accuracy in BD/DNC determination, prevent false positive determinations of death, and promote public trust in BD/DNC determination and the medical system overall.

Brain death/death by neurologic criteria (BD/DNC) is accepted as legal death throughout much of the world. The World Brain Death Project and a subsequent review of the literature through 2023 highlighted several medicolegal controversies related to BD/DNC in Canada, the United Kingdom, and the United States but did not discuss medicolegal controversies related to BD/DNC in low- and middle-income countries, such as India. Although the Transplantation of Human Organs Act of 1994 acknowledged BD/DNC as death in India, BD/DNC evaluations are not always completed when BD/DNC is suspected. This has been attributed to lack of awareness/acceptance by medical professionals, lack of public awareness/acceptance of BD/DNC, communication challenges, fear, time limitations, and the inclusion of BD/DNC in organ donation law (but not general law). There has been a gradual rise in the number of donations after BD/DNC (a correlate for the number of BD/DNC determinations) in southern and western states, but the number of donations after BD/DNC has decreased in the southwestern state of Kerala in the setting of recent medicolegal controversies. This article reviews the history of BD/DNC determination in India as a whole, then describes the recent medicolegal controversies related to BD/DNC in the state of Kerala. Finally, these controversies are contextualized relative to the aforementioned controversies in high-income countries. Three key international themes of medicolegal controversies related to BD/DNC are regulation, religion, and resource allocation. The global neurocritical care community must advocate for consistency and accuracy in BD/DNC determination and collaborate with legal and policy experts to develop means to mitigate these challenges through revisions to the law, standardization of practice and policies, education, and communication.

Severe brain injury can result in disorders of consciousness (DoC), including coma, vegetative state/unresponsive wakefulness syndrome, and minimally conscious state. Improved emergency and trauma medicine response, in addition to expanding efforts to prevent premature withdrawal of life-sustaining treatment, has led to an increased number of patients with prolonged DoC. High-quality bedside care of patients with DoC is key to improving long-term functional outcomes. However, there is a paucity of DoC-specific evidence guiding clinicians on efficacious bedside care that can promote medical stability and recovery of consciousness. This Viewpoint describes the state of current DoC bedside care and identifies knowledge and practice gaps related to patient care with DoC collated by the Care of the Patient in Coma scientific workgroup as part of the Neurocritical Care Society's Curing Coma Campaign. The gap analysis identified and organized domains of bedside care that could affect patient outcomes: clinical expertise, assessment and monitoring, timing of intervention, technology, family engagement, cultural considerations, systems of care, and transition to the post-acute continuum. Finally, this Viewpoint recommends future research and education initiatives to address and improve the care of patients with DoC.