The intriguing issue of pain and suffering in patients with disorders of consciousness (DOCs), particularly in Unresponsive Wakefulness Syndrome/Vegetative State (UWS/VS) and Minimally Conscious State (MCS), is assessed from a theoretical point of view, through an overview of recent neuroscientific literature, in order to sketch an ethical analysis. In conclusion, from a legal and ethical point of view, formal guidelines and a situationist ethics are proposed in order to best manage the critical scientific uncertainty about pain and suffering (...) in DOCs and ensure the best possible care for the patient. (shrink)

Disorders of consciousness (DOC) raise profound scientific, clinical, ethical, and philosophical issues. Growing knowledge on fundamental principles of brain organization in healthy individuals offers new opportunities for a better understanding of residual brain function in DOCs. We here discuss new perspectives derived from a recently proposed scheme of brain organization underlying consciousness in healthy individuals. In this scheme, thalamo-cortical networks can be divided into two, often antagonistic, global systems: (i) a system of externally oriented, sensory-motor networks (the (...) ‘‘extrinsic’’ system); and (ii) a system of inward-oriented networks (the ‘‘intrinsic’’ or default system). According to this framework, four distinct mental states would be possible that could be relevant for understanding DOCs. In normal healthy volunteers and locked-in syndrome patients, a state of high functionality of both the extrinsic and intrinsic or default systems is expected — associated with full awareness of environment and self. In this case, mental imagery tasks combined with fMRI can be used to detect covert awareness in patients that are unable to communicate. According to the framework, two complementary states of system imbalance are also possible, in which one system is in a hyperfunctional state, while the other is hypoactive. Extrinsic system hyperfunction is expected to lead to a state of total sensory-motor ‘‘absorption’’ or ‘‘lost self.’’ In contrast, intrinsic or default system hyperfunction is expected to lead to a state of complete detachment from the external world. A state where both extrinsic and intrinsic systems are hypofunctional is predicted to lead to markedly impaired consciousness as seen in DOCs. Finally, we review the potential use of ultra-slow fluctuations in BOLD signal as a tool for assessing the functional integrity of extrinsic and intrinsic systems during ‘‘resting state’’ fMRI acquisitions.. (shrink)

The Royal College of Physicians of London published the 2013 national clinical guidelines on prolonged disorders of consciousness in vegetative and minimally conscious states. The guidelines acknowledge the rapidly advancing neuroscientific research and evolving therapeutic modalities in PDOC. However, the guidelines state that end-of-life decisions should be made for patients who do not improve with neurorehabilitation within a finite period, and they recommend withdrawal of clinically assisted nutrition and hydration . This withdrawal is deemed necessary because patients in (...) PDOC can survive for years with continuation of CANH, even when a ceiling on medical care has been imposed, i.e., withholding new treatment such as cardiopulmonary resuscitation for acute life-threatening illness. The end-of-life care pathway is centered on a staged escalation of medications, including sedatives, opioids, barbiturates, and general anesthesia, concurrent with withdrawal of CANH. Agitation and distress may last from several days to weeks because of the slow dying process from starvation and dehydration. The potential problems of this end-of-life care pathway are similar to those of the Liverpool Care Pathway. After an independent review in 2013, the Department of Health discontinued the Liverpool Care pathway in England. The guidelines assert that clinicians, supported by court decisions, have become the final authority in nonconsensual withdrawal of CANH on the basis of “best interests” rationale. We posit that these guidelines lack high-quality evidence supporting: 1) treatment futility of CANH, 2) reliability of distress assessment from starvation and dehydration, 3) efficacy of pharmacologic control of this distress, and 4) proximate causation of death. Finally, we express concerns about the utilitarian-based assessment of what constitutes a person’s best interests. We are disturbed by the level and the role of medical authoritarianism institutionalized by these national guidelines when deciding on the worthiness of life in PDOC. We conclude that these guidelines are not only harmful to patients and families, but they represent the means of nonconsensual euthanasia. The latter would constitute a gross violation of the public’s trust in the integrity of the medical profession. (shrink)

Human consciousness is widely understood to be underpinned by rich and diverse functional networks, whose breakdown results in unconsciousness. Candidate neural correlates of anesthetic-induced unconsciousness include: (1) disrupted frontoparietal functional connectivity; (2) disrupted brain network hubs; and (3) reduced spatiotemporal complexity. However, emerging counterexamples have revealed that these markers may appear outside of the state they are associated with, challenging both their inclusion as markers of conscious level, and the theories of consciousness that rely on their evidence. In (...) this study, we present a case series of three individuals in disorders of consciousness (DOC) who exhibit paradoxical brain responses to exposure to anesthesia. High-density electroencephalographic data were recorded from three patients with unresponsive wakefulness syndrome (UWS) while they underwent a protocol of propofol anesthesia with a targeted effect site concentration of 2 μg/ml. Network hubs and directionality of functional connectivity in the alpha frequency band (8–13 Hz), were estimated using the weighted phase lag index (wPLI) and directed phase lag index (dPLI). The spatiotemporal signal complexity was estimated using three types of Lempel-Ziv complexity (LZC). Our results illustrate that exposure to propofol anesthesia can paradoxically result in: (1) increased frontoparietal feedback-dominant connectivity; (2) posterior network hubs; and (3) increased spatiotemporal complexity. The case examples presented in this paper challenge the role of functional connectivity and spatiotemporal complexity in theories of consciousness and for the clinical evaluation of levels of human consciousness. (shrink)

Disorders of consciousness (DOC) are a family of related neurological syndromes characterized by deficits of varying degrees of wakefulness (e.g., sleep–wake cycles and arousal) or awareness (e.g., reacting to stimuli, interacting with the environment). Although coma rarely persists for more than a few weeks, some patients remain in a subsequent vegetative state or a minimally conscious state for months or years. Caring for patients with DOC raises ethical questions, but the perspectives of healthcare providers on these questions (...) remain poorly documented. We conducted a qualitative study involving healthcare providers with different backgrounds. Semistructured interviews were used to explore attitudes toward ethical issues. We found that contextual (e.g., time, resource allocation) and relational aspects (e.g., communication process, families) shaped how ethical challenges surfaced and were managed. We call for greater awareness of contextual, institutional and social aspects and focus on these issues in training programs. (shrink)

The experience of conscious will is the feeling that we are doing things. This feeling occurs for many things we do, conveying to us again and again the sense that we consciously cause our actions. But the feeling may not be a true reading of what is happening in our minds, brains, and bodies as our actions are produced. The feeling of conscious will can be fooled. This happens in clinical disorders such as alien hand syndrome, dissociative identity disorder, (...) and schizophrenic auditory hallucinations. And in people without disorders, phenomena such as hypnosis, automatic writing, Ouija board spelling, water dowsing, facilitated communication, speaking in tongues, spirit possession, and trance channeling also illustrate anomalies of will not from processes whereby mind creates action. Conscious will, in this view, is an indication that we think we have caused an action, not a revelation of the causal sequence by which the action was produced. (shrink)

Pain, suffering and positive emotions in patients in vegetative state/unresponsive wakefulness syndrome (VS/uws) and minimally conscious states (MCS) pose clinical and ethical challenges. Clinically, we evaluate behavioural responses after painful stimulation and also emotionally-contingent behaviours (e.g., smiling). Using stimuli with emotional valence, neuroimaging and electrophysiology technologies can detect subclinical remnants of preserved capacities for pain which might influence decisions about treatment limitation. To date, no data exist as to how healthcare providers think about end-of-life options (e.g., withdrawal of artificial nutrition (...) and hydration) in the presence or absence of pain in non-communicative patients. Here, we aimed to better clarify this issue by re-analyzing previously published data on pain perception (Prog Brain Res 2009 177, 329–38) and end-of-life decisions (J Neurol 2010 258, 1058–65) in patients with disorders of consciousness. In a sample of 2259 European healthcare professionals we found that, for VS/uws more respondents agreed with treatment withdrawal when they considered that VS/uws patients did not feel pain (77%) as compared to those who thought VS/uws did feel pain (59%). This interaction was influenced by religiosity and professional background. For MCS, end-of-life attitudes were not influenced by opinions on pain perception. Within a contemporary ethical context we discuss (1) the evolving scientific understandings of pain perception and their relationship to existing clinical and ethical guidelines; (2) the discrepancies of attitudes within (and between) healthcare providers and their consequences for treatment approaches, and (3) the implicit but complex relationship between pain perception and attitudes toward life-sustaining treatments. (shrink)

Modelling and simulations have gained a leading position in contemporary attempts to describe, explain, and quantitatively predict the human brain's operations. Computer models are highly sophisticated tools developed to achieve an integrated knowledge of the brain with the aim of overcoming the actual fragmentation resulting from different neuroscientific approaches. In this paper we investigate plausibility of simulation technologies for emulation of consciousness and the potential clinical impact of large-scale brain simulation on the assessment and care of disorders of (...) consciousness, e.g. Coma, Vegetative State/Unresponsive Wakefulness Syndrome, Minimally Conscious State.Notwithstanding their technical limitations, we suggest that simulation technologies may offer new solutions to old practical problems, particularly in clinical contexts. We take DOCs as an illustrative case, arguing that the simulation of neural correlates of consciousness is potentially useful for improving treatments of patients with DOCs. (shrink)

Disorders of consciousness (DoC)—that is, unresponsive wakefulness syndrome/vegetative state and minimally conscious state—are debilitating conditions for which no reliable markers of consciousness recovery have yet been identified. Evidence points to the GABAergic system being altered in DoC, making it a potential target as such a marker.

Pain, suffering and positive emotions in patients in vegetative state/unresponsive wakefulness syndrome (VS/UWS) and minimally conscious states (MCS) pose clinical and ethical challenges. Clinically, we evaluate behavioural responses after painful stimulation and also emotionally-contingent behaviours (e.g., smiling). Using stimuli with emotional valence, neuroimaging and electrophysiology technologies can detect subclinical remnants of preserved capacities for pain which might influence decisions about treatment limitation. To date, no data exist as to how healthcare providers think about end-of-life options (e.g., withdrawal of artificial nutrition (...) and hydration) in the presence or absence of pain in non-communicative patients. Here, we aimed to better clarify this issue by re-analyzing previously published data on pain perception (Prog Brain Res 2009 177, 329–38) and end-of-life decisions (J Neurol 2010 258, 1058–65) in patients with disorders of consciousness. In a sample of 2259 European healthcare professionals we found that, for VS/UWS more respondents agreed with treatment withdrawal when they considered that VS/UWS patients did not feel pain (77%) as compared to those who thought VS/UWS did feel pain (59%). This interaction was influenced by religiosity and professional background. For MCS, end-of-life attitudes were not influenced by opinions on pain perception. Within a contemporary ethical context we discuss (1) the evolving scientific understandings of pain perception and their relationship to existing clinical and ethical guidelines; (2) the discrepancies of attitudes within (and between) healthcare providers and their consequences for treatment approaches, and (3) the implicit but complex relationship between pain perception and attitudes toward life-sustaining treatments. (shrink)

BackgroundFunctional neurodiagnostics could allow researchers and clinicians to distinguish more accurately between the unresponsive wakefulness syndrome and the minimally conscious state. It remains unclear how it informs surrogate decision-making.ObjectiveTo explore how the next of kin of patients with disorders of consciousness interpret the results of a functional neurodiagnostics measure and how/why their interpretations influence their attitudes towards medical decisions.Methods and SampleWe conducted problem-centered interviews with seven next of kin of patients with DOC who had undergone a functional HD-EEG (...) examination at a neurological rehabilitation center in Germany. The examination included an auditory oddball paradigm and a motor imagery task to detect hidden awareness. We analyzed the interview transcripts using structuring qualitative content analysis.ResultsRegardless of the diagnostic results, all participants were optimistic of the patients’ meaningful recovery. We hypothesize, that participants deal with the results of examinations according to their belief system. Thus, an unfavorable evaluation of the patient’s state had the potential to destabilize the participant’s belief system. To re-stabilize or to prevent the destabilization of their belief system, participants used different strategies. Participants accepted a “positive” HD-EEG result since it stabilized their belief system.ConclusionWe hypothesize, that a group of next of kin of patients with DOC deals with functional neurodiagnostics results on the basis of the result’s value and their high hope that the patient will recover meaningfully. A psychological mechanism seems to moderate the impact of functional neurodiagnostics on surrogate treatment decisions. (shrink)

Notwithstanding fundamental methodological advancements, scientific information about disorders of consciousness (DOCs)—e.g. Vegetative State/Unresponsive Wakefulness Syndrome (VS/UWS) and Minimally Conscious State (MCS)—is incomplete. The possibility to discriminate between different levels of consciousness in DOC states entails treatment strategies and ethical concerns. Here we attempted to investigate Italian clinicians’ and basic scientists’ opinions regarding some issues emerging from the care and the research on patients with DOCs. From our survey emerged that Italian physicians working with patients with DOCs give (...) a central role to ethics. Current Italian regulation regarding basic research conducted in patients with DOCs apparently risks to be inadequate to support scientific advancement, and would deserve a different assessment compared to ordinary treatments. We think the results of our survey deserve attention from an international audience because they exemplify the difficulty to define a shared approach to the issues related to patients with DOCs and the necessity to better assess both the ordinary and experimental treatment of patients with DOCs at the ethical and legal level. (shrink)

Objectives: Recent fMRI studies have shown that it is possible to reliably identify the defaultmode network (DMN) in the absence of any task, by resting-state connectivity analyses in healthy volunteers. We here aimed to identify the DMN in the challenging patient population of disorders of consciousness encountered following coma. Experimental design: A spatial independent component analysis-based methodology permitted DMN assessment, decomposing connectivity in all its different sources either neuronal or artifactual. Three different selection criteria were introduced assessing anticorrelation-corrected (...) connectivity with or without an automatic masking procedure and calculating connectivity scores encompassing both spatial and temporal properties. These three methods were validated on 10 healthy controls and applied to an independent group of 8 healthy controls and 11 severely brain-damaged patients [locked-in syndrome (n ¼ 2), minimally conscious (n ¼ 1), and vegetative state (n ¼ 8)]. Principal observations: All vegetative patients showed fewer connections in the default-mode areas, when compared with controls, contrary to locked-in patients who showed nearnormal connectivity. In the minimally conscious-state patient, only the two selection criteria considering both spatial and temporal properties were able to identify an intact right lateralized BOLD connectivity pattern, and metabolic PET data suggested its neuronal origin. Conclusions: When assess-. (shrink)

How can we be certain that another creature is a conscious being? One path is to rely on introspective reports we can grasp in communication or observation of their behavior. Another path is to infer mentality and consciousness by means of markers tied to their intentional behavior, that is, agency. In this paper we will argue that even if agency is a marker of consciousness in several normal instances (paradigmatically, for mature and healthy human beings), it is not (...) a good marker in several pathological instances, such as the blindsight case, the vegetative state, the akinetic mutism and the locked-in syndrome. If we are right, this can be of great utility in neuroethics; for those kinds of disorders of consciousness are not, after all, instances of complete absence of consciousness. (shrink)

Understanding loss of consciousness after brain injury poses a practical test for the field of consciousness research, with both clinical and ethical implications. We here discuss three major pathological disorders of consciousness; coma, the unresponsive wakefulness syndrome and the minimally conscious state, which together represent a lesion model for the investigation of human awareness. We review the anatomical and neurophysiological correlates of each condition, and discuss the current findings in context of several theoretical frameworks of (...) class='Hi'>consciousness. (shrink)

Various psychopathologies of self-awareness, such as somatoparaphrenia and thought insertion in schizophrenia, might seem to threaten the viability of the higher-order thought (HOT) theory of consciousness since it requires a HOT about one’s own mental state to accompany every conscious state. The HOT theory of consciousness says that what makes a mental state a conscious mental state is that there is a HOT to the effect that “I am in mental state M.” I have argued in previous work (...) that a HOT theorist can adequately respond to this concern with respect to somatoparaphrenia and thought insertion. There is also Cotard syndrome which is a rare neuropsychiatric disorder in which people hold the delusional belief that they are dead, do not exist, or have lost their blood or internal organs. In this paper, I argue that HOT theory has nothing to fear from it either and can consistently account for what happens in such unusual cases. I analyze Cotard syndrome in light of my previous discussion of somatoparaphrenia and thought insertion, and argue that HOT theory can provide a somewhat analogous account without the worry of inconsistency. It is crucial to recognize that there are multiple “self-concepts” and levels of HOTs which can help to provide a more nuanced explanation. With regard to the connection between consciousness and self-consciousness, it is proposed that Cotard patients are indeed capable of having some “I-thoughts” about their bodies and mental states. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Pathology of the Mind: Disorder Versus DisabilityRichard G. T. Gipps (bio)Keywordsorder, disorder, ability, disability, mental illnessAlfredo Gaete (2008) describes mental disorders as impairments in intentionality, phenomenal consciousness, and intelligence that cause harm to the affected person. I found persuasive Gaete’s claim that the concept of ‘mental disorder’ is best understood as nontheoretical and nontechnical. I also find compelling his argument that a previous contribution of my own—which (...) relied in part on specifying different senses of ‘disorder’ in psychological, physiological, and social cases—was misguided. Further, his suggestion that we ought at least to attempt analysis in terms of necessary and sufficient conditions before we seek out less definitive characterizations (in terms of family resemblances) also persuades me, although I find myself less sanguine than he about the general possibility of achieving such analyses.One of Gaete’s principal claims is that mental disorder is helpfully understood in terms of an absence of a capacity—that is, as a disability. There are two related objections—or two aspects of the same objection—that I would like to offer the author with respect to this claim. These may well not be conclusive, but will I hope at least function as foils against which the author can usefully sharpen his argument. One objection suggests that there is a viable distinction between the concepts of mental disorder and mental disability, as commonly used in clinical contexts, which the account offered seems unable to respect. The second suggests that the account may not be able to theorize what is argued to be the essential contribution of the concepts of order and disorder (as opposed to ability and disability) to the everyday concept of mental disorder. Accordingly, it questions the power of a disability approach such as Gaete’s to capture the essential nature of mental disorder.In his paper, Gaete classifies mental retardation and developmental, or (what in the United Kingdom are known as) learning, disabilities (autism, etc.) as cases of mental disorder. I found this surprising because it is not common linguistic practice in the psychological circles in which I operate. It would also seem to make a nonsense of commonly accepted ideas like: “Mental disorders are more likely to occur in patients with developmental disabilities (e.g., in autism, Asperger, or Down syndrome) than in the general population.” (For an example, see Campbell and Malone [1991]). On Gaete’s classification, it would appear that people with autism eo ipso have a mental disorder, and [End Page 341] hence the commonly accepted idea would need to be interpreted as merely a statement about comorbidities of different disorders of the same general (i.e., mental) type. But that is not, I believe, how the term is commonly used, and Gaete’s suggestion must therefore be treated as revisionary rather than descriptively analytical.One way of reconstructing a rationale underlying the distinction between mental disabilities and mental disorders is as follows. A developmental disability involves a failure of (certain aspects of) the mind to grow and reach an expected level or type of organization. A mental disorder by contrast involves a disturbance or disorganization (not simply an impoverishment) within the mind at whichever level of organization it has reached. As the mind develops, and reaches new levels or types of organization, the forms which mental disorders may take accordingly change.Autism and schizophrenia provide helpful illustrations of this distinction. Autism represents a failure of (among other things) the social mind to develop in childhood. The person with moderate to severe autism may attain at best a very shaky grasp on the realities of other minds and social conventions. That is, the degree of mental structure they obtain—their social competencies or capacities—will likely remain limited. It is this fundamental deficit that marks out the disability, and not the social anxieties or other such disturbances that can beset the autistic person.Schizophrenia, by contrast, tends to occur at late adolescence, when the individual has developed higher levels of—albeit often fragile—mental structure. Yet it is not the fragility of such mental structure, but rather the disruptions that can occur within such structures as have developed, that mark them out... (shrink)

In recent years, there has been much focus on the apparent heterogeneity of schizophrenic symptoms. By contrast, this article proposes a unifying account emphasizing basic abnormalities of consciousness that underlie and also antecede a disparate assortment of signs and symptoms. Schizophrenia, we argue, is fundamentally a self-disorder or ipseity disturbance that is characterized by complementary distortions of the act of awareness: hyperreflexivity and diminished self-affection. Hyperreflexivity refers to forms of exaggerated self-consciousness in which aspects of oneself are experienced (...) as akin to external objects. Diminished self-affection or self-presence refers to a weakened sense of existing as a vital and self-coinciding source of awareness and action. This article integrates recent psychiatric research and European phenomenological psychiatry with some current work in cognitive science and phenomenological philosophy. After introducing the phenomenological approach along with a theoretical account of normal consciousness and self-awareness, we turn to a variety of schizophrenic syndromes. We examine positive, then negative, and finally disorganization symptoms—attempting in each case to illuminate shared distortions of consciousness and the sense of self. We conclude by discussing the possible relevance of this approach for identifying early schizophrenic symptoms. (shrink)

Human consciousness is a finite entity; therefore, memory must be selective: remembering must also mean being able to forget. In 2006, James McGaugh documented the first known case of hyperthymesia—a syndrome that affects a very limited percentage of the world population. The main symptoms of this mental disorder involve the concept of memory stuck in the past, where the individual is imprisoned by his or her own memories, and any projection towards the future is precluded. The inevitable change produced (...) by the flowing of time naturally helps people to find reasons to live and to search for a sense of being in the world. The present study puts forward a phenomenological approach to hyperthymesia in the quest for a natural, healthy form of oblivion, or the ability to forget. Through existential analysis, it could be possible for the individual to recover the natural and necessary structure of Dasein. (shrink)

Among other issues, Peterson and colleagues (2021) raise the crucial but vexing question of how to assess the well-being of patients with disorders of consciousness (DoCs). I provide some suggestio...

Autism provides a model for exploring the nature of self‐consciousness: self‐consciousness requires the ability to reflect on mental states, and autism is a disorder with a specific impairment in the neurocognitive mechanism underlying this ability. Experimental studies of normal and abnormal development suggest that the abilities to attribute mental states to self and to others are closely related. Thus inability to pass standard ‘theory of mind’ tests, which refer to others’ false beliefs, may imply lack of self‐consciousness. (...) Individuals who persistently fail these tests may, in the extreme, be unable to reflect on their intentions or to anticipate their own actions. In contrast, individuals with high‐functioning autism or Asperger syndrome often possess a late‐acquired, explicit theory of mind, which appears to be the result of effortful learning. An experimental study with three people with Asperger syndrome suggested that level of performance on standard theory of mind tasks was strongly related to the ability to engage in introspection. Qualitative differences in the introspections of high‐functioning people with autism are also reflected in autobiographical accounts which may give a glimpse of what it is like to be autistic. (shrink)

Consciousness is arguably the most important interdisciplinary area in contemporary philosophy of mind, with an explosion of research over the past thirty years from philosophers, psychologists, and scientists. It is also perhaps the most puzzling aspect of the world despite the fact that it is familiar to each of us. Consciousness also seems resistant to any straightforward physical explanation. This book introduces readers to the contemporary problem of consciousness, providing a clear introduction to the overall landscape and (...) a fair-minded critical survey of various theories of consciousness. Beginning with essential historical background to the problem of consciousness, Rocco Gennaro explores the following key topics and debates: the metaphysical problem of consciousness, including varieties of dualism and materialism; consciousness and neuroscience, particularly the question of whether consciousness can be reduced to brain activity or attentional mechanisms; representational and cognitive theories of consciousness; consciousness and psychopathology; animals, machines, and consciousness. Extensive use is made of interesting phenomena throughout the book, ranging from blindsight, synaesthesia, and change blindness to phantom limb syndrome, split-brain cases, and dissociative identity disorder. The inclusion of chapter summaries, annotated further reading, and a glossary make this book essential reading for anyone seeking a clear and informative overview of the problem of consciousness, not only in philosophy but related fields such as psychology and cognitive science. (shrink)

According to conventional wisdom, the split-brain syndrome puts paid to the thesis that consciousness is necessarily unified. The aim of this paper is to challenge that view. I argue both that disunity models of the split-brain are highly problematic, and that there is much to recommend a model of the split-brain—the switch model—according to which split-brain patients retain a fully unified consciousness at all times. Although the task of examining the unity of consciousness through the lens of (...) the split-brain syndrome is not a new one—such projects date back to Nagel’s seminal paper on the topic—the time is ripe for a re-evaluation of the issues. (shrink)

The last decade has seen impressive and intriguing advances in the exploration of vestiges of consciousness in patients with disorders of consciousness . Consciousness is an extremely complex area of research so it is difficult to provide unequivocal interpretations of these new findings from DOC-studies. This review therefore provides a conceptual analysis of a series of key studies in this area of research. The main upshot is that different studies of preserved consciousness in DOC are (...) best seen as targeting different aspects of consciousness rather than a unitary property of being conscious. These different aspects of consciousness thus seem to dissociate and fractionate in DOC. This provides a deeper understanding of the nature and structure of consciousness in general, and it provides suggestions for future research in DOC and the science of consciousness. Further methodological, conceptual, and ethical issues are discussed. (shrink)

The presence or absence of consciousness is the linchpin of taxonomy for disorders of consciousness (DOCs), as well as a focal point for end-of-life decision making for patients with DOCs. Focus on consciousness in this latter context has been criticized for a number of reasons, including the uncertainty of the diagnostic criteria for consciousness, the irrelevance of some forms of consciousness for determining a patient’s interests, and the ambiguous distinction between consciousness and unconsciousness. (...) As a result, there have been recent suggestions that perhaps consciousness ought not to play the focal role that it does in decision making for persons with DOCs, and that other considerations, such as patient and family values, ought to take center stage. In this article, I take a step back and reexamine the meaning of consciousness in the DOC taxonomy. I propose that, while consciousness in DOC taxonomy is defined as “wakeful awareness,” this definition, while clinically expedient, occasions ethical misunderstanding. Using resources from non-Western philosophy of mind, I argue that the form of consciousness that is ethically relevant in DOCs is intransitive, or pure. I contrast this pure experience with transitive consciousness to highlight why ethical conclusions ought not define consciousness solely as “wakeful awareness,” even if clinical criteria do. (shrink)

The application of neuroimaging technology to the study of the injured brain has transformed how neuroscientists understand disorders of consciousness, such as the vegetative and minimally conscious states, and deepened our understanding of mechanisms of recovery. This scientific progress, and its potential clinical translation, provides an opportunity for ethical reflection. It was against this scientific backdrop that we convened a conference of leading investigators in neuroimaging, disorders of consciousness and neuroethics. Our goal was to develop an (...) ethical frame to move these investigative techniques into mature clinical tools. This paper presents the recommendations and analysis of a Working Meeting on Ethics, Neuroimaging and Limited States of Consciousness held at Stanford University during June 2007. It represents an interdisciplinary approach to the challenges posed by the emerging use of neuroimaging technologies to describe and characterize disorders of consciousness. (shrink)

Deep brain stimulation (DBS) of the globus pallidus interna and subthalamic nucleus has restored some degree of motor control in many patients in advanced stages of Parkinson’s disease. DBS has also been used to treat dystonia, essential tremor (progressive neurological condition causing trembling), chronic pain, obsessive-compulsive disorder, Tourette’s syndrome, major depressive disorder, obesity, cerebral palsy, and the minimally conscious state. Although the underlying mechanisms of the technique are still not clear, DBS can modulate underactive or overactive neural circuits and restore (...) disrupted communication between and among groups of neurons in interacting regions of the brain. This can control and relieve many symptoms associated with a range of neurological and psychiatric disorders.But the procedures of implanting and stimulating the electrodes are brain-invasive and entail significant risks. Some patients receiving DBS have experienced intracerebral hemorrhage, infection, cognitive disturbances such as impulsive behavior, and affective disturbances such as mania. It is not known whether continuous electrical stimulation of the brain would reshape synaptic connectivity and permanently alter neural circuits in ways that may not be salutary. The risk of these effects indicates that DBS should be used only when a patient’s condition is refractory to all other interventions and when there is a high probability that the technique will benefit the patient and improve his or her quality of life. If a patient’s quality of life is poor and all other treatment options have been exhausted, then the likelihood of benefit can justify physicians’ exposing patients to some risk. The clinical and ethical significance of the risk in DBS underscores the obligation of physicians to obtain fully informed consent from patients undergoing the procedure. (shrink)

Coronavirus disease 2019 (COVID-19) is likely to have long-term mental health effects on individuals who have recovered from COVID-19. Rightly, there is a global response for recognition and planning on how to deal with mental health problems for everyone impacted by the global pandemic. This does not just include COVID-19 patients but the general public and health care workers as well. There is also a need to understand the role of the virus itself in the pathophysiology of mental health (...) class='Hi'>disorders and longer-term mental health sequelae. Emerging evidence suggests that COVID-19 patients develop neurological symptoms such as headache, altered consciousness, and paraesthesia. Brain tissue oedema and partial neurodegeneration have also been observed in an autopsy. In addition, there are reports that the virus has the potential to cause nervous system damage. Together, these findings point to a possible role of the virus in the development of acute psychiatric symptoms and long-term neuropsychiatric sequelae of COVID-19. The brain pathologies associated with COVID-19 infection is likely to have a long-term impact on cognitive processes. Evidence from other viral respiratory infections, such as severe acute respiratory syndrome (SARS), suggests a potential development of psychiatric disorders, long-term neuropsychiatric disorders, and cognitive problems. In this paper, we will review and evaluate the available evidence of acute and possible long-term neuropsychiatric manifestations of COVID-19. We will discuss possible pathophysiological mechanisms and the implications this will have on preparing a long-term strategy to monitor and manage such patients. (shrink)

The application of neuroimaging technology to the study of the injured brain has transformed how neuroscientists understand disorders of consciousness, such as the vegetative and minimally conscious states, and deepened our understanding of mechanisms of recovery. This scientific progress, and its potential clinical translation, provides an opportunity for ethical reflection. It was against this scientific backdrop that we convened a conference of leading investigators in neuroimaging, disorders of consciousness and neuroethics. Our goal was to develop an (...) ethical frame to move these investigative techniques into mature clinical tools. This paper presents the recommendations and analysis of a Working Meeting on Ethics, Neuroimaging and Limited States of Consciousness held at Stanford University during June 2007. It represents an interdisciplinary approach to the challenges posed by the emerging use of neuroimaging technologies to describe and characterize disorders of consciousness. (shrink)

The Phenomenological Mind is the first book to properly introduce fundamental questions about the mind from the perspective of phenomenology. Key questions and topics covered include: What is phenomenology? naturalizing phenomenology and the empirical cognitive sciences phenomenology and consciousness consciousness and self-consciousness, including perception and action time and consciousness, including William James intentionality the embodied mind action knowledge of other minds situated and extended minds phenomenology and personal identity Interesting and important examples are used throughout, including (...) phantom limb syndrome, blindsight and self-disorders in schizophrenia, making The Phenomenological Mind an ideal introduction to key concepts in phenomenology, cognitive science and philosophy of mind. (shrink)

Recent studies indicate that patients who are diagnosed with vegetative states may retain more awareness than their clinical assessments suggest. Disorders of consciousness traditionally have been diagnosed on the basis of outwardly observable behaviors alone, but new functional imaging studies have shown surprising levels of brain activity in some patients, indicating that even higher-level cognitive functions like language processing and visual imagery may be preserved. For example, one recently developed method purports to detect voluntary mental imagery solely on (...) the basis of neural response patterns observed with functional magnetic resonance imaging. This line of research has already led to some widely reported cases of patients who were discovered to have more brain activity than expected. In November 2009, Rom Houben, a Belgian man who was thought to be in a coma for 23 years, was diagnosed with locked-in syndrome through the use of neuroimaging; however, that assessment was later overturned by further testing. (shrink)

Disorders of Consciousness (DoCs) raise difficult and complex questions about the value of life for persons with impaired consciousness, the rights of persons unable to make medical decisions, and our social, medical, and ethical obligations to patients whose personhood has frequently been challenged and neglected. Recent neuroscientific discoveries have led to enhanced understanding of the heterogeneity of these disorders, and focused renewed attention on the medical and ethical problem of misdiagnosis. -/- This book examines the entanglement (...) of epistemic and ethical uncertainty in DoCs and other medical contexts, and how they interact to create both epistemic and ethical risks. Philosopher and bioethicist L. Syd M Johnson pulls together multiple threads in this work: the ontological mysteries of consciousness, medical uncertainty about unconsciousness, ableist bias, withdrawal of treatment in neurointensive care, and the rarely questioned view that consciousness is essential to personhood and moral status. Johnson challenges longstanding bioethical dogmas about DoC patients, and argues for an ethics of uncertainty for contexts where there is a need for decisive action in the presence of unavoidable uncertainty. The ethics of uncertainty refocuses ethical inquiry concerning persons with DoCs, placing less emphasis on their contested personhood, and more on inductive risk and uncertainty, on respect for autonomy, and especially on epistemic justice. With applications to various decisional contexts where uncertainty and ethical risk interact, this ethical approach enables surrogate decision makers facing fraught and risky choices to fulfill their obligations as moral and epistemic agents. (shrink)

Abstract:This paper, presented as the 2019 Cambridge Quarterly Neuroethics NetworkCharcot Lecture, traces the nosology of disorders of consciousness in light of 2018 practice guidelines promulgated by the American Academy of Neurology, the American College of Rehabilitation Medicine and the National Institute on Disability, Independent Living and Rehabilitation Research. By exploring the ancient origins of Jennett and Plum’s persistent vegetative state and subsequent refinements in the classification of disorders of consciousness—epitomized by the minimally conscious state, cognitive motor (...) dissociation, and the recently described chronic vegetative state—the author argues that there is a counter-narrative to the one linking these conditions to the right to die. Instead, there is a more nuanced schema distinguishing futility from utility, informed by technical advances now able to identify covert consciousness contemplated by Jennett and Plum. Their prescience foreshadows recent developments in the disorders of consciousness literature yielding a layered legacy with implications for society’s normative and legal obligations to these patients. (shrink)

Advocates of the Person-Centered Healthcare (PCH) approach say that PCH is a response to a failure of caring for patients as persons. Nevertheless, there are many human subjects falling to fulfill the requirements of a traditional philosophical definition of personhood. Hence, if we take, PCH seriously, a greater clarification of the key terminology of PCH is urgently needed. It seems necessary, for instance, that the concept of the person should be extended in order to include those individuals with insipient or (...) immature levels of consciousness, as well as those who are severely and permanently mentally handicapped. In this article, we will depart from some well-known philosophical concepts of what it means to be a person and try to offer a broader and more inclusive meaning. We suggest that persons are human beings with a socially recognized biography, which implies to recognize as persons individuals with necessities, but also with narratives about their interests and claims, expressed sometimes by other people related to them. This is particularly the case of individuals that suffer from severe disorders of consciousness. For those, is not only care that matters; respect matters too. Caregivers should therefore not only sympathetically care for the well-being of these people; they should also be concerned to respect their interests and claims by interpreting them empathetically, in the light of their biographical story. Our conclusion is that, in order to be coherent, PCH must consider individuals with severe disorders of consciousness as persons and we think that our revised concept of personhood fits with this requirement. (shrink)

A recent qualitative study published in Neuroethics by Schembs and colleagues explores how functional neurodiagnostics of consciousness inform surrogate decision making in cases of disorders of consciousness. In this commentary, we argue that the chosen methodology significantly limits the scope of the potential conclusions and suggest an embedded ethnographic approach of co-presence as an alternative.

The present dissertation starts from the general claim that neuroscience is not neutral, with regard to theoretical questions like the nature of consciousness, but it needs to be complemented with dedicated conceptual analysis. Specifically, the argument for this thesis is that the combination of empirical and conceptual work is a necessary step for assessing the significant questions raised by the most recent study of the brain. Results emerging from neuroscience are conceptually very relevant in themselves but, notwithstanding its theoretical (...) sophistication, neuroscience is not sufficient to provide a complete interpretation or an appropriate understanding of their impact. Consequently, the present thesis starts from the need for an interdisciplinary and hybrid field of research, i.e. fundamental neuroethics. Within this framework, the thesis takes consciousness and related disorders and the addicted brain as illustrative cases of the potential fruitful collaboration between empirical and conceptual investigations. The general goal of the thesis is to contribute to the overall development of bridging the gap between empirical and conceptual understandings of consciousness. The first paper sets the theoretical framework, providing an empirically-based description of the brain with significant philosophical implications for an understanding of consciousness. The last three papers of the thesis try to apply the theoretical framework to illustrative cases. Papers II and III analyse the possible application of science and technology for an easier detection and clinical care of patients with disorders of consciousness, with particular attention to communication mediated by neurotechnology and the simulation of the conscious brain, respectively; paper IV provides a potentially new ethical analysis of addiction within the elaborated general conceptual framework. The conclusion of the thesis is that the impact of neuroscientific results needs that a dedicated conceptual approach reveals and investigates their conceptual meaning. This conceptual analysis is not exclusive but integrative and complementary to the empirical science. The case of consciousness, analysed from both an ethical and conceptual point of view, is highly illustrative in this respect. In the end, a conceptual/linguistic work of clarification is urgently needed. (shrink)

The main goal of Brain Death and Disorders of Consciousness is to provide a suitable scientific platform to discuss all topics related to human death and coma.

In the care of patients with disorders of consciousness (DOC), some ethical difficulties stem from the challenges of accurate diagnosis and the uncertainty of prognosis. Current neuroimaging research on these disorders could eventually improve the accuracy of diagnoses and prognoses and therefore change the context of end-of-life decision making. However, the perspective of healthcare professionals on these disorders remains poorly understood and may constitute an obstacle to the integration of research. We conducted a qualitative study involving (...) healthcare professionals from an acute care university medical center. A short questionnaire captured demographic data as well as the experience of participants with DOC patients. A semi-structured interview was used to explore attitudes toward ethical issues identified in a previous literature review. Qualitative content analysis of interviews was conducted with the NVivo software. Accurate diagnosis among DOC is often regarded as a challenge, but this was generally not the case for our participants because most reported high confidence in DOC diagnoses. However, participants reported struggling with prognosis, especially because of its essential role for end-of-life decision making and communication with families. Variability of opinion between healthcare professionals was reported and identified by some as a minor issue while others stressed how families struggle with different medical opinions. End-of-life decision making encompassed a large proportion of ethical challenges in these patients, and the removal of artificial nutrition and hydration created significant discomfort in a minority of participants. The concept of futility was subject to wide-ranging understandings with both favorable and unfavorable opinions. Our data suggest that to ensure the incorporation of new evidence-based advances, attention should be directed to the real-world practices and challenges of accurate diagnosis and prognosis. Given pervasive challenges in end-of-life care, we recommend improved training of healthcare professionals in the care of patients with DOC, particularly in end-of life care, understanding the context of decision making, and determining how to optimally integrate new neuroscience research on the care of patients with DOC. (shrink)

As a member of the New York State Task Force on Life and the Law and the author of Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness, the author draws upon his work as a clinical ethicist during the COVID-19 Spring surge in New York to analyze the impact of ventilator allocation guidelines proposed by the Task Force on people with disorders of consciousness. While a non-discriminatory methodology was intended by the Task Force, (...) the author concludes that the guidelines would have discriminated against people with disorders of consciousness had they been promulgated. This was due to errors in exclusion criteria, the utilization of the Sequential Organ Failure Assessment (SOFA) score, and the Glasgow Coma Scale which assesses motor output and not consciousness. While allocation and triage decisions may be neccessary during a pandemic, the ethical integrity of these determinations depend upon proper metrics. (shrink)

Human beings have the unique ability to consciously reflect on the nature of the self. But reflection has its costs. We can ask what the self is, but as David Hume pointed out, the self, once reflected upon, may be nowhere to be found. The favored view is that we are material beings living in the material world. But if so, a host of destabilizing questions surface. If persons are just a sophisticated sort of animal, then what sense is there (...) to the idea that we are free agents who control our own destinies? What makes the life of any animal, even one as sophisticated as Homo sapiens, worth anything? What place is there in a material world for God? And if there is no place for a God, then what hold can morality possibly have on us--why isn't everything allowed? Flanagan's collection of essays takes on these questions and more. He continues the old philosophical project of reconciling a scientific view of ourselves with a view of ourselves as agents of free will and meaning-makers. But to this project he brings the latest insights of neuroscience, cognitive science, and psychiatry, exploring topics such as whether the conscious mind can be explained scientifically, whether dreams are self-expressive or just noise, the moral socialization of children, and the nature of psychological phenomena such as multiple personality disorder and false memory syndrome. What emerges from these explorations is a liberating vision which can make sense of the self, agency, character transformation, and the value and worth of human life. Flanagan concludes that nothing about a scientific view of persons must lead to nihilism. (shrink)

Several types of inferences are employed in the diagnosis and prognosis of patients with brain injuries and disorders of consciousness. These inferences introduce unavoidable uncertainty, and can be evaluated in light of inductive risk: the epistemic and nonepistemic risks of being wrong. This article considers several ethically significant inductive risks generated by and interacting with inferences about patients with disorders of consciousness, and argues for prescriptive measures to manage and mitigate inductive risk in the context of (...) disorders of consciousness. (shrink)

This chapter highlights the complexity of the relationship between enhancement of mood and cognition on the one hand and the improvement of people's well‐being on the other. To do so, two psychiatric conditions, Asperger's syndrome and bipolar disorder, are presented in the chapter. Even though there are both negative and positive aspects to Asperger's syndrome or to bipolar disorders, taking away even these negative aspects would not necessarily promote well‐being. It might also be impossible to isolate the positive aspects (...) of these disorders. An increase in specific forms of cognition might be intrinsically connected to a decrease in specific aspects of mood. A decrease in specific aspects of mood might be intrinsically connected to an increase in creativity. Neither is necessarily linked to any changes in some general form of “well‐being.”. (shrink)

In this chapter, I first review and assess evidence regarding brain damage or neural abnormalities associated with some psychopathologies and cognitive deficits, such as hemispatial neglect, agnosias, amnesia, somatoparaphrenia, and others. It becomes clear just how closely normal mental functioning and consciousness depend upon normal brain functioning as well as how some very specific mental changes occur when, and only when, very specific brain damage occurs. I then explore the metaphysical implications of these results with respect to the nature (...) of mind and consciousness. In particular, I examine the plausibility of materialism, roughly the view that mental processes are brain processes, in light of the evidence discussed and in contrast to a dualist conception of the mind (whereby mental states are not physical in some sense). I also explore the prospects for a conscious afterlife based both on the brain damage evidence adduced and the metaphysical implications discussed. (shrink)

FUNCTIONAL MAGNETIC RESONANCE IMAGING DETECTS DEGREES of consciousness in a few vegetative patients, despite the difficulty of establishing any form of communication with them at the bedside. What are the implications of our understanding of consciousness in defining one's identity? How do we care for these patients? To answer these questions, I propose relationality as an appropriate ethical resource. Relationality supports a renewed understanding of consciousness, identity, and care; it addresses the associated ethical issues; and it characterizes (...) who we are, how we understand ourselves theologically, and how, through discernment, we promote justice and love. (shrink)

Current management of people with prolonged disorders of consciousness is failing patients, families and society. The causes include a general lack of concern, knowledge and expertise; a legal and professional framework which impedes timely and appropriate decision-making and/or enactment of the decision; and the exclusive focus on the patient, with no legitimate means to consider the broader consequences of healthcare decisions. This article argues that a clinical pathway based on the principles of the English Mental Capacity Act 2005 (...) and using time-limited treatment trials could greatly improve patient management and reduce stress on families. There needs to be early and continuing use of formal best interests meetings, starting between 7 and 21 days after onset of unconsciousness. The treatment options need to evolve as the clinical state and prognosis becomes more certain. A formal discussion of treatment withdrawal should occur when the upper bound of predicted recovery falls below a level the patient would have considered acceptable, and it should always be discussed when the condition is considered permanent. Any decision to stop treatment should be contingent on a formal second opinion from an independent expert who should review the clinical situation and expected prognosis, but not the best interests decision. The article also asks how, if at all, the adverse effects on the family and the resource implications of long-term care of people left in a prolonged state of unconsciousness should be incorporated in the process. (shrink)

First-person reports of Major Depressive Disorder reveal that when an individual becomes depressed a profound change or ‘shift’ to one’s conscious experience occurs. The depressed person reports that something fundamental to their experience has been disturbed or shifted; a change associated with the common but elusive claim that when depressed one finds oneself in a ‘different world’ detached from reality and other people. Existing attempts to utilise these phenomenological observations in a psychiatric context are challenged by the fact that this (...) experiential ‘shift’ characteristic of depression appears mysterious and resists analysis in scientific terms. This paper offers a way out of this predicament. The hypothesis proposed is that when an individual becomes depressed, the individual departs from a state of ordinary wakeful consciousness and enters a distinctive global state of consciousness akin to dreaming and the psychedelic state. After unpacking and motivating this hypothesis in the context of research in consciousness science, I outline two of its important implications for the neurobiology of depression and psychedelic psychiatry. The upshot is a promising and conceptually well-motivated hypothesis about depression which is apt for empirical uptake and development. (shrink)