Neuroethics, Covert Consciousness, and Disability Rights: What Happens When Artificial Intelligence Meets Cognitive Motor Dissociation?

In this article, we consider the intersection of cognitive motor dissociation (CMD) and artificial intelligence (AI), hence when CMD meets AI. In covert consciousness, there is a discordance between the observed behavior, the traditional bedside mode of assessment, and the response to volitional commands as depicted by neuroimaging or EEG studies. This alphabet soup of acronyms represents both the promise and peril of nascent technology in covert consciousness. On the diagnostic side, there is the complexity and uncertainty of identifying the discordance between cognitive activity and overt behavior. On the therapeutic side, when AI is used to generate speech, there is the possibility of misrepresenting the thoughts and intentions of those who are otherwise voiceless. This concordance of factors makes the application of AI to CMD worthy of deeper consideration. We offer this analysis in the spirit of anticipatory governance, a prudential process by which one plans to prevent or mitigate unintended consequences of novel technology. We first consider the normative challenges posed by CMD for clinical practice, neuroethics, and the law. We then explore the history of covert consciousness and the relationship of severe brain injury to the right-to-die movement, before introducing three biographies of brain injury that highlight the potential impact of disability bias or ableism in clinical practice, assistive technology, and translational research. Subsequently, we explore how AI might give voice to conscious individuals who are unable to communicate and the ethical challenges that this technology must overcome to promote human flourishing drawing upon what Nussbaum and Sen have described as a "capabilities approach" to promote normative reasoning.

A Descriptive Analysis of Access to Assistive Technology in Children With Acquired Brain Injury: The Right to Assistive Devices.

OBJECTIVE: Pediatric clinicians caring for children with acquired brain injury have noted that many individuals requiring assistive technology (AT) go unserved or face delays until devices are obtained, with potential adverse implications for recovery and development. In this article we map the pathways by which AT is prescribed and assess delays and barriers to access. METHODS: We conducted a retrospective chart review of patients with moderate to severe brain injury admitted to Blythedale Children's Hospital over a 2-year period using a database drawn from the medical record. RESULTS: We identified 72 children diagnosed with brain injury requiring at least 1 device. Devices were used to improve mobility and positioning, self-care, safety, and communication, and enable access to other technologies and foster social integration. We found that 55% of devices were delivered, with most deliveries to home or the hospital's outpatient department for fitting, training, and instruction. Time to delivery ranged from 12 to 250 days with an average of 69.4 days. Twenty percent of nondeliveries were attributable to change in medical status, transfer to a skilled nursing facility, or continued inpatient status, while 31% were canceled by the family. Other nondeliveries were attributed to insurance coverage. We also found that the medical record is not designed for the longitudinal tracking of devices, indicating the need for a prospective process to document the AT trajectory. CONCLUSION: Instead of tolerating delays and denials, there should be a normative expectation that children have a right to medically necessary devices, consistent with disability law. This analysis was undertaken as a step toward formulating a prospective means of tracking AT recommendations, approvals, denials, and/or deliveries. Our findings should be understood as a promissory note toward structural reforms that are reflective of society's responsibility to better meet the needs of vulnerable children and their families.

Cognitive Motor Dissociation: Gap Analysis and Future Directions.

BACKGROUND: Patients with disorders of consciousness who are behaviorally unresponsive may demonstrate volitional brain responses to motor imagery or motor commands detectable on functional magnetic resonance imaging or electroencephalography. This state of cognitive motor dissociation (CMD) may have prognostic significance. METHODS: The Neurocritical Care Society's Curing Coma Campaign identified an international group of experts who convened in a series of monthly online meetings between September 2021 and April 2023 to examine the science of CMD and identify key knowledge gaps and unmet needs. RESULTS: The group identified major knowledge gaps in CMD research: (1) lack of information about patient experiences and caregiver accounts of CMD, (2) limited epidemiological data on CMD, (3) uncertainty about underlying mechanisms of CMD, (4) methodological variability that limits testing of CMD as a biomarker for prognostication and treatment trials, (5) educational gaps for health care personnel about the incidence and potential prognostic relevance of CMD, and (6) challenges related to identification of patients with CMD who may be able to communicate using brain-computer interfaces. CONCLUSIONS: To improve the management of patients with disorders of consciousness, research efforts should address these mechanistic, epidemiological, bioengineering, and educational gaps to enable large-scale implementation of CMD assessment in clinical practice.

Baseball and Bioethics Revisited: The Pitch Clock and Age Discrimination in a Timeless Pastime.

In this essay, the author reflects on a decade's old essay on baseball and bioethics inspired by a conversation with the late David Thomasma. In a reprise of his earlier paper, Fins worries that modernity has come to baseball with the advent of the pitch clock and that this innovation brings age discrimination to a timeless pastime.

Toward a Social Bioethics Through Interpretivism: A Framework for Healthcare Ethics.

Recent global events demonstrate that analytical frameworks to aid professionals in healthcare ethics must consider the pervasive role of social structures in the emergence of bioethical issues. To address this, the authors propose a new sociologically informed approach to healthcare ethics that they term "social bioethics." Their approach is animated by the interpretive social sciences to highlight how social structures operate vis-à-vis the everyday practices and moral reasoning of individuals, a phenomenon known as social discourse. As an exemplar, the authors use social bioethics to reframe common ethical issues in psychiatric services and discuss potential implications. Lastly, the authors discuss how social bioethics illuminates the ways healthcare ethics consultants in both policy and clinical decision-making participate in and shape broader social, political, and economic systems, which then cyclically informs the design and delivery of healthcare.

Prolonged Unconsciousness is Common in COVID-19 and Associated with Hypoxemia.

OBJECTIVE: The purpose of this study was to estimate the time to recovery of command-following and associations between hypoxemia with time to recovery of command-following. METHODS: In this multicenter, retrospective, cohort study during the initial surge of the United States' pandemic (March-July 2020) we estimate the time from intubation to recovery of command-following, using Kaplan Meier cumulative-incidence curves and Cox proportional hazard models. Patients were included if they were admitted to 1 of 3 hospitals because of severe coronavirus disease 2019 (COVID-19), required endotracheal intubation for at least 7 days, and experienced impairment of consciousness (Glasgow Coma Scale motor score <6). RESULTS: Five hundred seventy-one patients of the 795 patients recovered command-following. The median time to recovery of command-following was 30 days (95% confidence interval [CI] = 27-32 days). Median time to recovery of command-following increased by 16 days for patients with at least one episode of an arterial partial pressure of oxygen (PaO2 ) value ≤55 mmHg (p < 0.001), and 25% recovered ≥10 days after cessation of mechanical ventilation. The time to recovery of command-following  was associated with hypoxemia (PaO2 ≤55 mmHg hazard ratio [HR] = 0.56, 95% CI = 0.46-0.68; PaO2 ≤70 HR = 0.88, 95% CI = 0.85-0.91), and each additional day of hypoxemia decreased the likelihood of recovery, accounting for confounders including sedation. These findings were confirmed among patients without any imagining evidence of structural brain injury (n = 199), and in a non-overlapping second surge cohort (N = 427, October 2020 to April 2021). INTERPRETATION: Survivors of severe COVID-19 commonly recover consciousness weeks after cessation of mechanical ventilation. Long recovery periods are associated with more severe hypoxemia. This relationship is not explained by sedation or brain injury identified on clinical imaging and should inform decisions about life-sustaining therapies. ANN NEUROL 2022;91:740-755.

Daniel Callahan's Decade of Doubt.

Daniel Callahan died on July 16, 2019, just short of his 89th birthday. In the years since, we have seen the overturning of abortion rights, a concern central to his scholarship and musings about the place of religion in American civic life. Callahan's journey from lay Catholic journalist and commentator at Commonweal to a co-founder of the Hastings Center, during his decade of doubt, is especially relevant today as America revisits established precedent governing a woman's right to choose. His life-long struggle with faith and the secularization of bioethics is a story worth telling, as it may foster dialogue across a divide between religious and laical thinkers that has fractured our political discourse. We recall Callahan's misgivings about the marginalization of religious perspectives in public life; he sought not the denial of complexity nor of difference in views, but rather the importance of free and honest debate around deeply held beliefs, contextualized in the realities of the contemporary world. Callahan's ambivalence about his faith remains a part of the fabric of American life, a story that Callahan chronicled to our collective benefit for over a half-century.

Ethics Along the Continuum of Research Involving Persons with Disorders of Consciousness.

Interest in disorders of consciousness (DoC) has grown substantially over the past decade and has illuminated the importance of improving understanding of DoC biology; care needs (use of monitoring, performance of interventions, and provision of emotional support); treatment options to promote recovery; and outcome prediction. Exploration of these topics requires awareness of numerous ethics considerations related to rights and resources. The Curing Coma Campaign Ethics Working Group used its expertise in neurocritical care, neuropalliative care, neuroethics, neuroscience, philosophy, and research to formulate an informal review of ethics considerations along the continuum of research involving persons with DoC related to the following: (1) study design; (2) comparison of risks versus benefits; (3) selection of inclusion and exclusion criteria; (4) screening, recruitment, and enrollment; (5) consent; (6) data protection; (7) disclosure of results to surrogates and/or legally authorized representatives; (8) translation of research into practice; (9) identification and management of conflicts of interest; (10) equity and resource availability; and (11) inclusion of minors with DoC in research. Awareness of these ethics considerations when planning and performing research involving persons with DoC will ensure that the participant rights are respected while maximizing the impact and meaningfulness of the research, interpretation of outcomes, and communication of results.

Bioethics, Ukraine, and the Peril of Silence.

By considering the history of bioethics and international humanitarian law, Joseph J. Fins contends that bioethics as an academic and moral community should stand in solidarity with Ukraine as it defends freedom and civility.

Subject and Family Perspectives from the Central Thalamic Deep Brain Stimulation Trial for Traumatic Brain Injury: Part II.

This is the second paper in a two-part series describing subject and family perspectives from the CENTURY-S (CENtral Thalamic Deep Brain Stimulation for the Treatment of Traumatic Brain InjURY-Safety) first-in-human invasive neurological device trial to achieve cognitive restoration in moderate to severe traumatic brain injury (msTBI). To participate, subjects were independently assessed to formally establish decision-making capacity to provide voluntary informed consent. Here, we report on post-operative interviews conducted after a successful trial of thalamic stimulation. All five msTBI subjects met a pre-selected primary endpoint of at least a 10% improvement in completion time on Trail-Making-Test Part B, a marker of executive function. We describe narrative responses of subjects and family members, refracted against that success. Interviews following surgery and the stimulation trial revealed the challenge of adaptation to improvements in cognitive function and emotional regulation as well as altered (and restored) relationships and family dynamics. These improvements exposed barriers to social reintegration made relevant by recoveries once thought inconceivable. The study's success sparked concerns about post-trial access to implanted devices, financing of device maintenance, battery replacement, and on-going care. Most subjects and families identified the need for supportive counseling to adapt to the new trajectory of their lives.

Minding Rights: Mapping Ethical and Legal Foundations of 'Neurorights'.

The rise of neurotechnologies, especially in combination with artificial intelligence (AI)-based methods for brain data analytics, has given rise to concerns around the protection of mental privacy, mental integrity and cognitive liberty - often framed as "neurorights" in ethical, legal, and policy discussions. Several states are now looking at including neurorights into their constitutional legal frameworks, and international institutions and organizations, such as UNESCO and the Council of Europe, are taking an active interest in developing international policy and governance guidelines on this issue. However, in many discussions of neurorights the philosophical assumptions, ethical frames of reference and legal interpretation are either not made explicit or conflict with each other. The aim of this multidisciplinary work is to provide conceptual, ethical, and legal foundations that allow for facilitating a common minimalist conceptual understanding of mental privacy, mental integrity, and cognitive liberty to facilitate scholarly, legal, and policy discussions.

Health Equity, History, and a New Presidential Bioethics Commission: Lessons from the "Lost" Reports.

Convening a national bioethics commission has historically been one of the most powerful bioethical legacies a US presidential administration can undertake. The Biden Administration has not yet created such a commission; here we argue that centering health equity and healthcare access would provide a vital framework for a new commission's legacy. Moreover, we demonstrate two crucial historical episodes when American presidents appointed commissions to examine the practical and ethical implications of these very issues. We turn first to the 1952 President's Commission report on "Building America's Health," a lofty vision of universal healthcare access stymied by both political conflict and unaddressed problems of racism in the era's legislation. Its rich yet incomplete account of American health inequities serves as a valuable forerunner to questions of justice in bioethics. We then explore the President's Commission's 1983 report "Securing Access to Healthcare: A Report on the Ethical Implications of Differences in the Availability of Health Services." This report took up the mantle of equity in healthcare access, again with mixed results. Only by understanding the checkered history of these overlooked, practically "lost" reports can a new era in American bioethics successfully re-center the goal of equitable health for all.

The neuroethics of disorders of consciousness: a brief history of evolving ideas.

Neuroethical questions raised by recent advances in the diagnosis and treatment of disorders of consciousness are rapidly expanding, increasingly relevant and yet underexplored. The aim of this thematic review is to provide a clinically applicable framework for understanding the current taxonomy of disorders of consciousness and to propose an approach to identifying and critically evaluating actionable neuroethical issues that are frequently encountered in research and clinical care for this vulnerable population. Increased awareness of these issues and clarity about opportunities for optimizing ethically responsible care in this domain are especially timely given recent surges in critically ill patients with prolonged disorders of consciousness associated with coronavirus disease 2019 around the world. We begin with an overview of the field of neuroethics: what it is, its history and evolution in the context of biomedical ethics at large. We then explore nomenclature used in disorders of consciousness, covering categories proposed by the American Academy of Neurology, the American Congress of Rehabilitation Medicine and the National Institute on Disability, Independent Living and Rehabilitation Research, including definitions of terms such as coma, the vegetative state, unresponsive wakefulness syndrome, minimally conscious state, covert consciousness and the confusional state. We discuss why these definitions matter, and why there has been such evolution in this nosology over the years, from Jennett and Plum in 1972 to the Multi-Society Task Force in 1994, the Aspen Working Group in 2002 and the 2018 American and 2020 European Disorders of Consciousness guidelines. We then move to a discussion of clinical aspects of disorders of consciousness, the natural history of recovery and ethical issues that arise within the context of caring for people with disorders of consciousness. We conclude with a discussion of key challenges associated with assessing residual consciousness in disorders of consciousness, potential solutions and future directions, including integration of crucial disability rights perspectives.

Should healthcare workers be prioritised during the COVID-19 pandemic? A view from Madrid and New York.

While COVID-19 has generated a massive burden of illness worldwide, healthcare workers (HCWs) have been disproportionately exposed to SARS-CoV-2 coronavirus infection. During the so-called 'first wave', infection rates among this population group have ranged between 10% and 20%, raising as high as one in every four COVID-19 patients in Spain at the peak of the crisis. Now that many countries are already dealing with new waves of COVID-19 cases, a potential competition between HCW and non-HCW patients for scarce resources can still be a likely clinical scenario. In this paper, we address the question of whether HCW who become ill with COVID-19 should be prioritised in diagnostic, treatment or resource allocation protocols. We will evaluate some of the proposed arguments both in favour and against the prioritisation of HCW and also consider which clinical circumstances might warrant prioritising HCW and why could it be ethically appropriate to do so. We conclude that prioritising HCW's access to protective equipment, diagnostic tests or even prophylactic or therapeutic drug regimes and vaccines might be ethically defensible. However, prioritising HCWs to receive intensive care unit (ICU) beds or ventilators is a much more nuanced decision, in which arguments such as instrumental value or reciprocity might not be enough, and economic and systemic values will need to be considered.

Dignity of Risk, Reemergent Agency, and the Central Thalamic Stimulation Trial for Moderate to Severe Brain Injury.

This article discusses the utility of Perske's "dignity of risk" as a useful heuristic to explain the consent process for a study to evaluate central thalamic deep brain stimulation as a means to restore cognitive function in moderate to severe brain injury. Narratives of interviews with subjects and their families from a related BRAIN Initiative study reveal discordant views on risk, with subjects being more risk-tolerant than their loved ones. This is a challenge for families who remain protective of subjects who have recovered to the point that they are capable of independent decision-making. While the legal threshold for consent has been met, normative and psychological challenges remain as families accommodate themselves to the reemergent agency of the subject. Dignity of risk is a constructive framework to apprehend how families come to appreciate the primacy of the subject's voice and affirm their reemergent agency following a devastating brain injury.

Ethics Priorities of the Curing Coma Campaign: An Empirical Survey.

BACKGROUND: The Curing Coma Campaign (CCC) is a multidisciplinary global initiative focused on evaluation, diagnosis, treatment, research, and prognostication for patients who are comatose due to any etiology. To support this mission, the CCC Ethics Working Group conducted a survey of CCC collaborators to identify the ethics priorities of the CCC and the variability in priorities based on country of practice. METHODS: An electronic survey on the ethics priorities for the CCC was developed using rank-choice questions and distributed between May and July 2021 to a listserv of the 164 collaborators of the CCC. The median rank for each topic and subtopic was determined. Comparisons were made on the basis of country of practice. RESULTS: The survey was completed by 93 respondents (57% response rate); 67% practiced in the United States. On the basis of respondent ranking of each topic, the prioritization of ethics topics across respondents was as follows: (1) clinical care, (2) diagnostic definitions, (3) clinical research, (4) implementation/innovation, (5) family, (6) data management, (7) public engagement/perceptions, and (8) equity. Respondents who practiced in the United States were particularly concerned about public engagement, the distinction between clinical care and research, disclosure of results from clinical research to families, the definition of "personhood," and the distinction between the self-fulfilling prophecy/nihilism and medical futility. Respondents who practiced in other countries were particularly concerned about diagnostic modalities for clinical care, investigational drugs/devices for clinical research, translation of research into practice, and the definition of "minimally conscious state." CONCLUSIONS: Collaborators of the CCC considered clinical care, diagnostic definitions, and clinical research the top ethics priorities of the CCC. These priorities should be considered as the CCC explores ways to improve evaluation, diagnosis, treatment, research, and prognostication of patients with coma and associated disorders of consciousness. There is some variability in ethics priorities based on country of practice.

Proceedings of the Second Curing Coma Campaign NIH Symposium: Challenging the Future of Research for Coma and Disorders of Consciousness.

This proceedings article presents actionable research targets on the basis of the presentations and discussions at the 2nd Curing Coma National Institutes of Health (NIH) symposium held from May 3 to May 5, 2021. Here, we summarize the background, research priorities, panel discussions, and deliverables discussed during the symposium across six major domains related to disorders of consciousness. The six domains include (1) Biology of Coma, (2) Coma Database, (3) Neuroprognostication, (4) Care of Comatose Patients, (5) Early Clinical Trials, and (6) Long-term Recovery. Following the 1st Curing Coma NIH virtual symposium held on September 9 to September 10, 2020, six workgroups, each consisting of field experts in respective domains, were formed and tasked with identifying gaps and developing key priorities and deliverables to advance the mission of the Curing Coma Campaign. The highly interactive and inspiring presentations and panel discussions during the 3-day virtual NIH symposium identified several action items for the Curing Coma Campaign mission, which we summarize in this article.

Subject and Family Perspectives from the Central Thalamic Deep Brain Stimulation for Traumatic Brain Injury Study: Part I.

This is the first article in a two-part series describing subject and family perspectives from the central thalamic deep brain stimulation for the treatment of traumatic brain injury using the Medtronic PC + S first-in-human invasive neurological device trial to achieve cognitive restoration in moderate to severe traumatic brain injury, with subjects who were deemed capable of providing voluntary informed consent. In this article, we report on interviews conducted prior to surgery wherein we asked participants about their experiences recovering from brain injury and their perspectives on study enrollment and participation. We asked how risks and benefits were weighed, what their expectations and fears were, and how decisions were reached about trial participation. We found that informed consent and enrollment decisions are fraught. Subjects and families were often split, with subjects more focused on putative benefits and families concerned about incremental risk. Both subjects and families viewed brain injury as disruptive to personal identity and relationships. As decisions were made about study enrollment, families struggled with recognizing the re-emergent agency of subjects and ceding decision-making authority to subjects who had previously been dependent upon them for protection and guidance. Subjects and family members reported a hope for the relief of cognitive disabilities, improved quality of life, normalization of interpersonal interactions, and a return to work or school as reasons for study participation, along with altruism and a desire to advance science. Despite these aspirations, both subjects and families appreciated the risks of the intervention and did not suffer from a therapeutic misconception. A second essay to be published in the next issue of Cambridge Quarterly of Healthcare Ethics-Clinical Neuroethics will describe interviews conducted after surgery, the effects of cognitive restoration for subjects, families, and challenges presented to the social structures they will call upon to support them through recovery. This subsequent article will be available online prior to its formal publication in October 2023.

Ethics Consultation in Surgical Specialties.

Multiple studies have been performed to identify the most common ethical dilemmas encountered by ethics consultation services. However, limited data exists comparing the content of ethics consultations requested by specific hospital specialties. It remains unclear whether the scope of ethical dilemmas prompting an ethics consultation differ between specialties and if there are types of ethics consultations that are more or less frequently called based on the specialty initiating the ethics consult. This study retrospectively assessed the incidence and content of ethics consultations called by surgical vs. non-surgical specialties between January 1, 2013 to December 31, 2018 using our RedCap Database and information collected through the EMR via our Clinical and Translational Science Center. 548 total ethics consultations were analyzed (surgical n = 135, non-surgical n = 413). Our results demonstrate that more surgical consults originated from the ICU, as opposed to lower acuity units (45.9% vs. 14.3%, p ≤ 0.001), and surgical patients were more likely to have a DNR in place (37.5% vs. 22.2%, p = 0.002). Surgical specialties were more likely to call about issues relating to withholding/withdrawing life-sustaining treatment (p ≤ 0.001), while non-surgical specialties were more likely to call about issues related to discharge planning (p = 0.001). There appear to be morally relevant differences between consults classified as the "same" that are not entirely captured by the usual ethics consultations classification system. In conclusion, this study highlights the unique ethical issues experienced by surgical vs. non-surgical specialties. Ultimately, our data can help ethics consultation services determine how best to educate various hospital specialties to approach ethical issues commonly experienced within their field.

Resuscitating Patient Rights during the Pandemic: COVID-19 and the Risk of Resurgent Paternalism.

The COVID-19 Pandemic a stress test for clinical medicine and medical ethics, with a confluence over questions of the proportionality of resuscitation. Drawing upon his experience as a clinical ethicist during the surge in New York City during the Spring of 2020, the author considers how attitudes regarding resuscitation have evolved since the inception of do-not-resuscitate (DNR) orders decades ago. Sharing a personal narrative about a DNR quandry he encountered as a medical intern, the author considers the balance of patient rights versus clinical discretion, warning about the risk of resurgent physician paternalism dressed up in the guise of a public health crisis.