Embodied approaches in cognitive science hold that the body is crucial for cognition. What this claim amounts to, however, still remains unclear. This paper contributes to its clarification by confronting three ways of understanding embodiment—the sensorimotor approach, extended cognition and enactivism—with Locked-in syndrome. LIS is a case of severe global paralysis in which patients are unable to move and yet largely remain cognitively intact. We propose that LIS poses a challenge to embodied approaches to cognition requiring them to (...) make explicit the notion of embodiment they defend and its role for cognition. We argue that the sensorimotor and the extended functionalist approaches either fall short of accounting for cognition in LIS from an embodied perspective or do it too broadly by relegating the body only to a historical role. Enactivism conceives of the body as autonomous system and of cognition as sense-making. From this perspective embodiment is not equated with bodily movement but with forms of agency that do not disappear with body paralysis. Enactivism offers a clarifying perspective on embodiment and thus currently appears to be the framework in embodied cognition best suited to address the challenge posed by LIS. (shrink)

It has been argued that Extended Cognition (EXT), a recently much discussed framework in the philosophy of cognition, would serve as the theoretical basis to account for the impact of Brain Computer Interfaces (BCI) on the self and life of patients with Locked-in Syndrome (LIS). In this paper I will argue that this claim is unsubstantiated, EXT is not the appropriate theoretical background for understanding the role of BCI in LIS. I will critically assess what a theory of (...) the extended self would comprise and provide a list of desiderata for a theory of self that EXT fails to accommodate for. There is, however, an alternative framework in Cognitive Science, Enactivism, which entails the basis for an account of self that is able to accommodate for these desiderata. I will outline some first steps towards an Enactive approach to the self, suggesting that the self could be considered as a form of human autonomy. Understanding the self from an enactive point of view will allow to shed new light on the questions of whether and how BCIs affect or change the selves of patients with LIS. (shrink)

A point made repeatedly over the last few years is that the Locked-in Syndrome offers unique real-life material for revisiting and challenging certain ingrained philosophical assumptions about the nature of personhood and personal identity. Indeed, the claim has been made that a closer study of LIS will call into question some of the traditional conceptions of personhood that primarily highlight the significance of consciousness, self-consciousness and autonomy and suggest the need for a more interpersonal account of the person. (...) I am skeptical about these claims and will in the following argue that the theoretical relevance of LIS for an understanding of selfhood and personhood has been exaggerated. (shrink)

In a recent contribution to this journal, Andrew Fenton and Sheri Alpert have argued that the so-called “extended mind hypothesis” allows us to understand why Brain Computer Interfaces (BCIs) have the potential to change the self of patients suffering from Locked-in syndrome (LIS) by extending their minds beyond their bodies. I deny that this can shed any light on the theoretical, or philosophical, underpinnings of BCIs as a tool for enabling communication with, or bodily action by, patients with (...) LIS: BCIs are not a case of cognitive extension. I argue that Fenton and Alpert’s claim to the contrary is the result of a widespread confusion about some related, but significantly different, approaches to cognition that all fall under the heading of “situated cognition.” I first provide a short taxonomy of various situated approaches to cognition, highlighting (some of) their important commonalities and differences, which should dissolve some of the confusions surrounding them. Then I show why the extended mind hypothesis is unsuitable as a model of BCI enhancements of LIS patients’ capacity to interact with their surroundings, and I argue that the situated approach with obvious bearings on the sort of questions that were driving Fenton and Alpert is not the idea that cognition is extended , but the idea that cognition is enacted. (shrink)

I had my accident on the rugby field on July 29, 2000 about 2.00 p.m. during a simple line - out, even before the ball was thrown in. I t just felt like another simple case of concussion , I staggered to the sideline, the coach asked me “what ’s wrong”? He said I told him I just felt sick and to put me back on the field in 10 minutes. Then I collapsed, eventually blacked out and then was rushed (...) to hospital unconscious in an ambulance with them struggling drastically to keep me alive. Af ter three days of being in there, they thought I was alright and were going to send me home. Then it star ted happening. First I nearly collapsed again tak ing a shower . For days the spe - cialists didn’t k now what was wrong with me. M y girlfriend at the time, who had rushed down from Wanak a when she had heard it had happened went mad at the specialists to do something. Af ter six days of going in and out of seizures, finally af ter what seemed like all the tests k nown to man, they said I had suffered several brain stem strokes then one massive major one, which altogether had lef t me diagnosed with the ex tremely rare and unk nown condition only k nown to a few as “ locked in syndrome”. (shrink)

The existential situation of persons who suffer from the locked-in syndrome raises manifold issues significant to medical anthropology, phenomenology, biomedical ethics, and neuroethics that have not yet been systematically explored. The present special issue of Neuroethics illustrates the joint effort of a consolidating network of scholars from various disciplines in Europe, North America and Japan to go in that direction, and to explore LIS beyond clinical studies and quality of life assessments.

1Neurology Department and Cyclotron Research Center, University of Lie`ge, Sart Tilman B30, 4000 Liege, Belgium 2Neurorehabilitation Medicine, Hoˆpital Caremeau, CHU Nıˆmes, 30029 Nıˆmes Cedex, France 3Department of Speech Therapy, Hospital Pitie´ Salpe´trie`re, Paris and French Association Locked in Syndrome (ALIS), 225 Bd Jean-Jaures, MBE 182, 92100 Boulogne-Billancourt, France 4Neurosciences et Syste`mes Sensoriels Unite´ Mixte de Recherche 5020, Universite´ Claude Bernard Lyon 1 – CNRS, 69007 Lyon, France 5Intensive Care Medicine, Hoˆpital Erasme, Universite´ Libre de Bruxelles, Route de Lennik (...) 808, 1070 Brussels, Belgium 6Anesthesiology, Reanimation and Pain Clinic, CHU University Hospital, Sart Tilman B33, 4000 Liege, Belgium 7German Association Locked in Syndrome LIS e.V., Evangelischen Krankenhaus Ko¨ningin Elisabeth Herzberge gGmbh (Lehrkrankenhaus der Charite´), Haus 30, Herzbergstrasse 79, 10365 Berlin, Germany 8Intensive Care Medicine, Centre Hospitalier Re´gional de la Citadelle, Boulevard du 12e de Ligne 1, 4000 Liege, Belgium 9Biomedical PET Unit, Hoˆpital Erasme, Universite´ Libre de Bruxelles, Route de Lennik 808, 1070 Brussels, Belgium.. (shrink)

In this paper, the problem of correct ascriptions of consciousness to patients in neurological intensive care medicine is explored as a special case of the general philosophical other minds problem. It is argued that although clinical ascriptions of consciousness and coma are mostly based on behavioral evidence, a behaviorist epistemology of other minds is not likely to succeed. To illustrate this, the so-called total locked-in syndrome, in which preserved consciousness is combined with a total loss of motor abilities (...) due to a lower ventral brain stem lesion, is presented as a touchstone for behaviorism. It is argued that this example of consciousness without behavioral expression does not disprove behaviorism specifically, but rather illustrates the need for a non-verificationist theory of other minds. It is further argued that a folk version of such a theory already underlies our factual ascriptions of consciousness in clinical contexts. Finally, a non-behaviorist theory of other minds for patients with total locked-in syndrome is outlined. (shrink)

There is no systematic knowledge about how individuals with Locked-in Syndrome experience their situation. A phenomenology of LIS, in the sense of a description of subjective experience as lived by the ill persons themselves, does not yet exist as an organized endeavor. The present article takes a step in that direction by reviewing various materials and making some suggestions. First-person narratives provide the most important sources, but very few have been discussed. LIS barely appears in bioethics and neuroethics. (...) Research on Quality of Life provides relevant information, one questionnaire study explores the sense of personal continuity in LIS patients, and LIS has been used as a test case of theories in “embodied cognition” and to explore issues in the phenomenology of illness and communication. A systematic phenomenology of LIS would draw on these different areas: while some deal directly with subjective experience, others throw light on its psychological, sociocultural and materials conditions. Such an undertaking can contribute to the improvement of care and QOL, and help inform philosophical questions, such as those concerning the properties that define persons, the conditions of their identity and continuity, or the dynamics of embodiment and intersubjectivity. (shrink)

Locked-in syndrome (LIS) is a severe neurological condition that typically leaves a patient unable to move, talk and, in many cases, initiate communication. Brain Computer Interfaces (or BCIs) promise to enable individuals with conditions like LIS to re-engage with their physical and social worlds. In this paper we will use extended mind theory to offer a way of seeing the potential of BCIs when attached to, or implanted in, individuals with LIS. In particular, we will contend that functionally (...) integrated BCIs extend the minds of individuals with LIS beyond their bodies, allowing them greater autonomy than they can typically hope for in living with their condition. This raises important philosophical questions about the implications of BCI technology, particularly the potential to change selves, and ethical questions about whether society has a responsibility to aid these individuals in re-engaging with their physical and social worlds. It also raises some important questions about when these interventions should be offered to individuals with LIS and respecting the rights of these individuals to refuse intervention. By aiding willing individuals in re-engaging with their physical and social worlds, BCIs open up avenues of opportunity taken for granted by able individuals and introduce new ways in which these individuals can be harmed. These latter considerations serve to highlight our emergent social responsibilities to those individuals who will be suitable for, and receive, BCIs. (shrink)

The locked-in syndrome is a state of profound paralysis with preserved awareness of self and environment who typically results from a brain stem stroke. Although patients in LIS have great difficulty communicating, their consciousness, cognition, and language usually remain intact. Medical decision-making by LIS patients is compromised, not by cognitive impairment, but by severe communication impairment. Former systems of communication that permitted LIS patients to make only “yes” or “no” responses to questions was sufficient to validate their consent (...) for simple medical decisions but not for consequential medical decisions such as whether to refuse further life-sustaining therapy. Emerging technologies including computer-tracking assistance of retained partial motor function and brain-computer interfaces promise to improve the communication ability of LIS patients and, when better developed, will allow them to fully exercise their right to actively participate in consequential medical decisions about their own medical care. Although so-called “covert cognition” patients clinically diagnosed as vegetative state that are shown to be aware by functional neuroimaging maybe metaphorically considered locked-in, it is nosologically more coherent not to categorize them formally as LIS. (shrink)

Different sort of people are interested in personal identity. Philosophers frequently ask what it takes to remain oneself. Caregivers imagine their patients’ experience. But both philosophers and caregivers think from the armchair: they can only make assumptions about what it would be like to wake up with massive bodily changes. Patients with a locked-in syndrome suffer a full body paralysis without cognitive impairment. They can tell us what it is like. Forty-four chronic LIS patients and 20 age-matched healthy (...) medical professionals answered a 15-items questionnaire targeting: global evaluation of identity, body representation and experienced meaning in life. In patients, self-reported identity was correlated with B and C. Patients differed with controls in C. These results suggest that the paralyzed body remains a strong component of patients’ experienced identity, that patients can adjust to objectives changes perceived as meaningful and that caregivers fail in predicting patients’ experience. (shrink)

New brain-computer interface and neuroimaging techniques are making differentiation less ambiguous and more accurate between unresponsive wakefulness syndrome patients and patients with higher cognitive function and awareness. As research into these areas continues to progress, new ethical issues will face physicians of patients suffering from total locked-in syndrome, characterized by complete loss of voluntary muscle control, with retention of cognitive function and awareness detectable only with neuroimaging and brain-computer interfaces. Physicians, researchers, ethicists and hospital ethics committees should (...) be aware of and prepared to handle ethical issues unique to these totally locked-in patients. Several thought experiments are discussed, to highlight potential ethical dilemmas surrounding surrogate decision-making, autonomy, end-of-life care, and pediatric care, which will be unique to total LIS patients. These, along with other ethical problems especially relevant to total LIS patients, merit further discussion among physicians, researchers, ethicists and hospital ethics committees, to facilitate consensus regarding these issues, and improve patient care. (shrink)

Personhood is ascribed on others, such that someone who is recognized to be a person is bestowed with certain civil rights and the right to decision making. A rising question is how severely brain-injured patients who regain consciousness can also regain their personhood. The case of patients with locked-in syndrome is illustrative in this matter. Upon restoration of consciousness, patients with LIS find themselves in a state of profound demolition of their bodily functions. From the third-person perspective, it (...) can be expected that LIS patients might experience a differential personal identity and may lose their status as persons. However, from the patients’ perspective, it is uncontested that they retain their personal identity and that they consider themselves to be persons. We here include results from a survey with patients with LIS aimed at identifying the primary expectations of patients for their care by non-medical professionals. Based on these first-hand reports, we argue that personhood in LIS is progressively regained as the widening circle of others recognizes them as persons. (shrink)

Extensive scholarship has described the historical and ethical imperatives shaping the emergence of the brain death criteria in the 1960s and 1970s. This essay explores the longer intellectual history that shaped theories of neurological consciousness from the late-nineteenth century to that period, and argues that a significant transformation occurred in the elaboration of those theories in the 1960s and after, the period when various disturbances of consciousness were discovered or thoroughly elaborated. Numerous historical conditions can be identified and attributed to (...) the production of the new theories that emerged from that period-on, not least in the broader social and cultural transformations that occurred with decolonialization, pro-democracy movements, and civil and disability rights advocacy, all contexts which exerted pressures on the institutions and professions of medicine. In this telling, the discovery of the locked-in patient is thus the exploration of a transformed vision of medical patients – one that moved them from a liminal indefinite space into a firmly grounded epistemological existence – in a backdrop in which medical professionals in particular and society in general was beginning to see the body differently. With this new vision, came a relational theory of consciousness to, a reading of a body and it signs, that shifted consciousness from an internally-derived state into a relationally-constructed object. The ontology of consciousness, whatever it was, thereby became entangled with the social condition of consciousness, one that bridged the worlds of close relationship with the social movements and anxieties about personhood that emanated out of that fraught period. (shrink)

The history of brain-computer interfaces developed from a mere idea in the days of early digital technology to today’s highly sophisticated approaches for signal detection, recording, and analysis. In the 1960s, electroencephalography was tied to the laboratory due to equipment and recording requirements. Today, amplifiers exist that are built in the electrode cap and are so resistant to movement artefacts that data collection in the field is no longer a critical issue. Within 60 years, the field has moved from simple (...) and artefact-sensitive EEG recording to making real the vision of brain-computer communication. In the last 40 years, direct brain-computer interaction went from simple communication programs to sophisticated BCI-controlled applications. In the past two decades, much research was conducted with locked-in individuals, and since the 2010s, independent home use by exemplary patients has been demonstrated. In these patients with locked-in syndrome, BCI were installed at their home and long-term usage was established, resulting in increased quality of life. Maintaining communication in disorders leading to LIS contributes significantly to the patients’ sense of being full persons. BCI as an assistive technology will likely be perceived as integral part of the self: insofar as it can prevent total loss of communication and the ensuing social isolation, it enables essential conditions for the subjective and intersubjective experience of personhood. (shrink)

Personhood is ascribed on others, such that someone who is recognized to be a person is bestowed with certain civil rights and the right to decision making. A rising question is how severely brain-injured patients who regain consciousness can also regain their personhood. The case of patients with locked-in syndrome is illustrative in this matter. Upon restoration of consciousness, patients with LIS find themselves in a state of profound demolition of their bodily functions. From the third-person perspective, it (...) can be expected that LIS patients might experience a differential personal identity and may lose their status as persons. However, from the patients’ perspective, it is uncontested that they retain their personal identity and that they consider themselves to be persons. We here include results from a survey with patients with LIS aimed at identifying the primary expectations of patients for their care by non-medical professionals. Based on these first-hand reports, we argue that personhood in LIS is progressively regained as the widening circle of others recognizes them as persons. (shrink)

Donation after cardiac death (DCD) traditionally occurs in two patient populations: (1) those who do not meet neurological death criteria but who have suffered severe neurological damage, and (2) those who are fully alert and awake but are dependent on machines. This case highlights the unique dilemma when a patient falls between these two populations—conscious and cognitively intact, but completely paralyzed except for limited eye movement, afflicted by what the medical community refers to as locked-in syndrome. Prompted by (...) the treatment team’s discomfort, an ethics consultant examined whether the team was obligated to discuss a decision to donate with the patient, who was a registered organ donor. This article shows how, in determining whether or not to talk to the patient or family during end-of-life decision making, the weight assigned to the various ethical concerns in the case— the patient’s condition, the decision to be made, and the family’s agreement or disagreement regarding the patient’s wishes—can “swing the pendulum” of ethical analysis in different ways. The comfort of the patient must be accorded the highest priority, as well as the needs of the patient’s family. This case study highlights the nuanced contextual factors necessary to guide a treatment team’s approach to DCD for a patient with uncertain decision-making capacity. (shrink)

Locked-in syndrome (LIS) is one of the most dramatic neurological outcomes and has a profound impact on patients and their families. Most patients have intact cognition and intellectual ability and perception. Communication is possible with eyelid and/or eyeball movement. According to the literature, the wish to die is not an important issue in acute and chronic LIS. This study describes and analyses the ethical decision-making process in two opposite cases of LIS in the intensive care unit. One patient (...) expressed the wish to prolong her life for as long as possible; the other patient asked for deliberate termination of life. Both wishes were honoured. In conclusion, most patients with LIS are competent and intellectually intact. In The Netherlands the autonomy of the patient is respected by law. In respecting this autonomy, medical choices can be different in comparable patients. (shrink)

Marie-Aure´lie Bruno,1 Jan L Bernheim,2 Didier Ledoux,1 Fre´de´ric Pellas.

Alstin, Zac Results of a Belgian study have revealed that a large number of people suffering from Locked-In Syndrome are happy. Disability is foremost a challenge to one's values, not to our happiness.

Abstract:Brain–computer interfaces (BCIs) can enable communication for persons in severe paralysis including locked-in syndrome (LIS); that is, being unable to move or speak while aware. In cases of complete loss of muscle control, termed “complete locked-in syndrome,” a BCI may be the only viable solution to restore communication. However, a widespread ignorance regarding quality of life in LIS, current BCIs, and their potential as an assistive technology for persons in LIS, needlessly causes a harmful situation for (...) this cohort. In addition to their medical condition, these persons also face social barriers often perceived as more impairing than their physical condition. Through social exclusion, stigmatization, and frequently being underestimated in their abilities, these persons are being locked out in addition to being locked-in. In this article, we (1) show how persons in LIS are being locked out, including how key issues addressed in the existing literature on ethics, LIS, and BCIs for communication, such as autonomy, quality of life, and advance directives, may reinforce these confinements; (2) show how these practices violate the United Nations Convention on the Rights of Persons with Disabilities, and suggest that we have a moral responsibility to prevent and stop this exclusion; and (3) discuss the role of BCIs for communication as one means to this end and suggest that a novel approach to BCI research is necessary to acknowledge the moral responsibility toward the end users and avoid violating the human rights of persons in LIS. (shrink)

BackgroundWhether patients in the vegetative state (VS), minimally conscious state (MCS) or the clinically related locked-in syndrome (LIS) should be kept alive is a matter of intense controversy. This study aimed to examine the moral attitudes of lay people to these questions, and the values and other factors that underlie these attitudes.MethodOne hundred ninety-nine US residents completed a survey using the online platform Mechanical Turk, comprising demographic questions, agreement with treatment withdrawal from each of the conditions, agreement with (...) a series of ethical principles and three personality tests.ResultsMore supported treatment withdrawal from VS (40.2 % agreed, 17.6 % disagreed) than MCS (20.6 %, 41.2 %) or LIS (25.3 %, 35.8 %). Agreement with treatment withdrawal was negatively correlated with religiosity (r = −0.272, P < 0.001), though showed no significant relationship with need for cognition or empathy, and only a partial association with utilitarian judgment in a standard moral dilemma. Support for treatment withdrawal was most strongly associated with endorsement of the importance of patient autonomy, dignity, suffering, best interests. Distributive justice was not given significant weight by most. Importantly, agreement with treatment withdrawal was noticeably higher when considered from a first as opposed to third person perspective for VS (Z = −6.056, P < 0.001), MCS (Z = −6.746, P < 0.001) and LIS (Z = −6.681, P < 0.001).ConclusionLay attitudes to withdrawal of treatment in brain damaged patients are largely shaped by values similar to those central to the secular ethical debate. Neither traditional values such as the sanctity of life nor utilitarian values relating to resource allocation seem to play a central role. Far greater weight is given to autonomy, which may explain why participants were far more willing to endorse withdrawal of treatment when the issue was presented in the first person, or in relation to a concrete case involving a patient’s explicit wishes. Surveys focusing on abstract cases presented in the third person may not provide an accurate picture of lay attitudes to these critical ethical questions. (shrink)

Four previous papers in this journal have discussed the role of Brain-Computer Interfaces in the lives of Locked-In Syndrome patients in terms of the four “E” frameworks for cognition – extended, embedded, embodied, and enactive cognition. This paper argues that in the light of more recent literature on these 4E frameworks, none of the four papers has taken quite the right approach to deciding which, if any, of the E frameworks is the best one for the job. More (...) specifically, I argue for an approach that is pragmatist rather than purely metaphysical, pluralist rather than monist, and perhaps most importantly, local to particular research programmes, rather than about BCIs in general. The paper will outline this approach, then illustrate it with reference to a particular research programme which tackles the issue of BCI communication for patients in Complete Locked-In Syndrome. (shrink)

Jean Dominique Bauby, former editor of Elle, suffereda stroke to his brain stem that left him with locked-in syndrome. Subsequently, through blinking his left eye, he writes his memoirof this experience, The Diving Bell and the Butterfly. Thispaper explores the meaning of embodiment, especially as one'sbody bears upon one's personal identity. It explores the variouschallenges and threats to selfhood that result from Bauby'sexperience and recounts how Bauby rises to the challenge throughhis memory and imagination.

Williams Syndrome provides a striking test case for discourses on disability, because the characteristics associated with Williams Syndrome involve a combination of “abilities” and “disabilities”. For example, Williams Syndrome is associated with disabilities in mathematics and spatial cognition. However, Williams Syndrome individuals also tend to have a unique strength in their expressive language skills, and are socially outgoing and unselfconscious when meeting new people. Children with Williams are said to be typically unafraid of strangers and show (...) a greater interest in contact with adults than with their peers. This apparently keen social knowledge is a counterexample to the discussion of disability among academic philosophers, especially philosophers of the early modern period. Locke infamously used the example of disability to claim that Descartes’ arguments in favor of innate ideas were incorrect. On the contrary, Williams Syndrome may stand as an example of innate social knowledge; something that could benefit current discourse in philosophy, disability theory, and medical ethics. (shrink)

The present article is based on a interview with a Japanese experienced caregiver who specializes in patients with amyotrophic lateral sclerosis, which generally leads to the locked-in syndrome. Professional caregivers for ALS patients with ventilator experience two particular temporalities in their practice. First, they must monitor the patient continuously during a seven-hour stay. Because a single problem in the ventilator can have fatal consequences, the care of an ALS patient with a ventilator requires long periods of sustained concentration. (...) Second, trying to understand the signs of a patient with a ventilator sometimes requires three hours to go through ten alphabets. In addition to the huge effort that such communication requires, caregivers must complete the meaning of the signs with their imagination: the ten alphabets are not sufficient to understand what the patient really wants to say. This imaginative capacity, however, is based on a long relationship, which started when the patient was still able to speak and move. That is why, as this article will show, even when a patient has entered total LIS, the caregiver can continue to realize his or her wishes. (shrink)

This paper looks to phenomenology and enactive cognition in order to shed light on the self and sense of self of patients with locked-in syndrome. It critically discusses the concept of the minimal self, both in its phenomenological and ontological dimension. Ontologically speaking, the self is considered to be equal to a person’s sensorimotor embodiment. This bodily self also grounds the minimal sense of self as being a distinct experiential subject. The view from the minimal bodily self presupposes (...) that sociality comes after the self, or that in other words, the essence of self remains independent of our social interactions and relations. In this paper, I rely on the idea of enactive autonomy and Heidegger’s and Merleau-Ponty’s views of human existence as primordially social, to argue for the contrary. The self is fundamentally relational and this is also reflected at the level of the subjective experience of being a self. I indicate how a strong relational view of selfhood can serve as a preliminary heuristic to make sense of the situation of the patient with LIS and conclude with some practical implications concerning patient autonomy, our ethical responsibility toward the patient, and the possibilities for improving the life of patients with LIS. (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)

The term ‘locked-in’ syndrome (LIS) describes a medical condition in which persons concerned are severely paralyzed and at the same time fully conscious and awake. The resulting anarthria makes it impossible for these patients to naturally communicate, which results in diagnostic as well as serious practical and ethical problems. Therefore, developing alternative, muscle-independent communication means is of prime importance. Such communication means can be realized via brain–computer interfaces (BCIs) circumventing the muscular system by using brain signals associated with (...) preserved cognitive, sensory, and emotional brain functions. Primarily, BCIs based on electrophysiological measures have been developed and applied with remarkable success. Recently, also blood flow–based neuroimaging methods, such as functional magnetic resonance imaging (fMRI) and functional near-infrared spectroscopy (fNIRS), have been explored in this context. After reviewing recent literature on the development of especially hemodynamically based BCIs, we introduce a highly reliable and easy-to-apply communication procedure that enables untrained participants to motor-independently and relatively effortlessly answer multiple-choice questions based on intentionally generated single-trial fMRI signals that can be decoded online. Our technique takes advantage of the participants’ capability to voluntarily influence certain spatio-temporal aspects of the blood oxygenation level–dependent (BOLD) signal: source location (by using different mental tasks), signal onset and offset. We show that healthy participants are capable of hemodynamically encoding at least four distinct information units on a single-trial level without extensive pretraining and with little effort. Moreover, realtime data analysis based on simple multi-filter correlations allows for automated answer decoding with a high accuracy (94.9%) demonstrating the robustness of the presented method.. (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)

Coma, vegetative state, lock-in syndrome and akinetic mutism are defined. Vegetative state is a state with no evidence of awareness of self or environment and showing cycles of sleep and wakefulness. PVS is an operational definition including time as a variable. PVS is a vegetative state that has endured or continued for at least one month. PVS can be diagnosed with a reasonable amount of medical certainty; however, the diagnosis of PVS must be kept separate from the outcome. The (...) patient outcome can be predicted based on etiology and age. Using outcome probabilities and etiology as criteria, patients can be subdivided in 5 groups and reasonable management guidelines can be suggested. Three levels of care can be provided to PVS patients: high technology, supportive and compassionate care. Pragmatic options for the various subgroups of patients are suggested. Management decisions will remain difficult for both the family and the health-care team. The role of the physician in these difficult cases is to share the decision-making with the family. (shrink)

Coma, vegetative state, lock-in syndrome and akinetic mutism are defined. Vegetative state is a state with no evidence of awareness of self or environment and showing cycles of sleep and wakefulness. PVS is an operational definition including time as a variable. PVS is a vegetative state that has endured or continued for at least one month. PVS can be diagnosed with a reasonable amount of medical certainty; however, the diagnosis of PVS must be kept separate from the outcome. The (...) patient outcome can be predicted based on etiology and age. Using outcome probabilities and etiology as criteria, patients can be subdivided in 5 groups and reasonable management guidelines can be suggested. Three levels of care can be provided to PVS patients: high technology, supportive and compassionate care. Pragmatic options for the various subgroups of patients are suggested. Management decisions will remain difficult for both the family and the health-care team. The role of the physician in these difficult cases is to share the decision-making with the family. (shrink)

How should we treat patients diagnosed as being in a persistent vegetative state (PVS) or minimally conscious state (MCS)? More specifically, should we treat them as having the full moral status of persons? Yes, or so we argue. First, we introduce the medical conditions of PVS, MCS, and the related conditions of Locked-in Syndrome and covert awareness. Second, we characterize the main argument for thinking diagnosed PVS patients are not persons. Third, we contend that this argument is defeated (...) by mounting empirical evidence for the considerable uncertainty of PVS diagnoses. Fourth, we characterize a new argument for PVS non-personhood suggested by Neil Levy and Julian Savulescu, one intended to accommodate the diagnostic uncertainty. According to this argument, even if diagnosed PVS patients are in fact MCS, it makes no difference because MCS patients are probably not persons either. Fifth, we challenge the new argument by assembling reasons for doubting the claim that MCS patients are not persons. The outcome is that it is fairly uncertain whether diagnosed PVS and MCS patients are persons or not. What should we do in light of this uncertainty? Sixth, we develop and support a guiding precautionary principle, which we call Precautionary Personhood. Finally, we apply the principle to the case of diagnosed PVS and MCS patients: we argue that given substantial uncertainty about their personhood we should go ahead and treat these patients as if they are persons. (shrink)

Until comparatively recently, say the middle of the last century, spinal cord injury was fatal as pressure sores and other infections took their toll. Those with severe brain injuries, unable to move or even communicate, fared even worse; without movement or feeding such patients were nursed until nature took its course. Over the last few decades medical and nursing advances have enabled some of these vegetative patients to survive for considerable time, provoking, at times, ethical and legal dilemmas. Though they (...) survived, without overt behaviour or clear communication their carers were frequently unsure how much residual function remained. Now real progress is occurring in this area thanks to the application of neuro-scientific methods by some outstanding groups of workers. Subjects with severe brain injury may begin in complete, unresponsive coma but then ‘lighten’ to one of three categories. In vegetative state (VS), patients are apparently awake but without evidence of voluntary behaviour and have no apparent awareness of self or environment, whilst in minimally conscious state (MCS) patients have some behaviour beyond the reflex but are not able to communicate effectively. These conditions usually result from widespread brain damage at either or both cortical and subcortical levels due to injury or anoxia, though they can also be seen in end stage neurological conditions like Alzheimer’s. In locked in syndrome (LIS), patients ‘awake’ from coma, usually due to stroke, aware of their surroundings and their situation but unable to speak or move, beyond eye lid control and eye movement. For many, LIS will be recognised from Bauby’s extraordinary account in ‘The Diving Bell and the Butterfly,’ though, incidentally, it was presaged in Samuel Beckett’s novella ‘The Unnameable.’ LIS reflects a profound disconnection between brain and body, except for the upper cranial nerves involved in eyelid movement. The overriding question is how much awareness these patients have.. (shrink)

Consciousness is one of the most significant scientific problems today. Renewed interest in the nature of consciousness - a phenomenon long considered not to be scientifically explorable, as well as increasingly widespread availability of multimodal functional brain imaging techniques (EEG, ERP, MEG, fMRI and PET), now offer the possibility of detailed, integrated exploration of the neural, behavioral, and computational correlates of consciousness. The present volume aims to confront the latest theoretical insights in the scientific study of human consciousness with the (...) most recent behavioral, neuroimaging, electrophysiological, pharmacological and neuropathological data on brain function in altered states of consciousness such as: brain death, coma, vegetative state, minimally conscious state, locked-in syndrome, dementia, epilepsy, schizophrenia, hysteria, general anesthesia, sleep, hypnosis, and hallucinations. The interest of this is threefold. First, patients with altered states of consciousness continue to represent a major clinical problem in terms of clinical assessment of consciousness and daily management. Second, the exploration of brain function in altered states of consciousness represents a unique lesional approach to the scientific study of consciousness and adds to the worldwide effort to identify the "neural correlate of consciousness". Third, new scientific insights in this field have major ethical and social implications regarding our care for these patients. (shrink)

We are sometimes unsure of the moral status of our relationships with other entities. Recent case studies in this uncertainty include our relationships with artificial agents (robots, assistant AI, etc.), animals, and patients with “locked-in” syndrome. Do these entities have basic moral standing? Could they count as true friends or lovers? What should we do when we do not know the answer to these questions? An influential line of reasoning suggests that, in such cases of moral uncertainty, we (...) need meta-moral decision rules that allow us to either minimize the risks of moral wrongdoing or improve the choice-worthiness of our actions. One particular argument adopted in this literature is the “risk asymmetry argument,” which claims that the risks associated with accepting or rejecting some moral facts may be sufficiently asymmetrical as to warrant favoring a particular practical resolution of this uncertainty. Focusing on the case study of artificial beings, this article argues that this is best understood as an ethical-epistemic challenge. The article argues that taking potential risk asymmetries seriously can help resolve disputes about the status of human–AI relationships, at least in practical terms (philosophical debates will, no doubt, continue); however, the resolution depends on a proper, empirically grounded assessment of the risks involved. Being skeptical about basic moral status, but more open to the possibility of meaningful relationships with such entities, may be the most sensible approach to take. (shrink)