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.

Although enactive approaches to cognition vary in terms of their character and scope, all endorse several core claims. The first is that cognition is tied to action. The second is that cognition is composed of more than just in-the-head processes; cognitive activities are externalized via features of our embodiment and in our ecological dealings with the people and things around us. I appeal to these two enactive claims to consider a view called “direct social perception” : the idea that we (...) can sometimes perceive features of other minds directly in the character of their embodiment and environmental interactions. I argue that if DSP is true, we can probably also perceive certain features of mental disorders as well. I draw upon the developmental psychologist Daniel Stern’s notion of “forms of vitality”—largely overlooked in these debates—to develop this idea, and I use autism as a case study. I argue further that an enactive approach to DSP can clarify some ways we play a regulative role in shaping the temporal and phenomenal character of the disorder in question, and it may therefore have practical significance for both the clinical and therapeutic encounter. (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)

This paper takes a new look at an old question: what is the human self? It offers a proposal for theorizing the self from an enactive perspective as an autonomous system that is constituted through interpersonal relations. It addresses a prevalent issue in the philosophy of cognitive science: the body-social problem. Embodied and social approaches to cognitive identity are in mutual tension. On the one hand, embodied cognitive science risks a new form of methodological individualism, implying a dichotomy not between (...) the outside world of objects and the brain-bound individual but rather between body-bound individuals and the outside social world. On the other hand, approaches that emphasize the constitutive relevance of social interaction processes for cognitive identity run the risk of losing the individual in the interaction dynamics and of downplaying the role of embodiment. This paper adopts a middle way and outlines an enactive approach to individuation that is neither individualistic nor disembodied but integrates both approaches. Elaborating on Jonas’ notion of needful freedom it outlines an enactive proposal to understanding the self as co-generated in interactions and relations with others. I argue that the human self is a social existence that is organized in terms of a back and forth between social distinction and participation processes. On this view, the body, rather than being identical with the social self, becomes its mediator. (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)

This paper critically engages ethical issues in the allocation of novel, and potentially costly, health care resources to patients with disorders of consciousness. First, we review potential benefits of novel health care resources for patients and their families and outline preliminary considerations to address concerns about cost. We then address two problems regarding the allocation of health care resources to patients with disorders of consciousness: (1) the problem of uncertain moral status; and (2) the problem of accurately measuring the welfare (...) burdens these resources would relieve. We conclude by suggesting that opportunity-based frameworks might complement standard approaches for justifying resources allocation to patients with disorders of consciousness. (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)

Patient outcome after serious brain injury is highly variable. Following a period of coma, some patients recover while others progress into a vegetative state (unresponsive wakefulness syndrome) or minimally conscious state. In both cases, assessment is difficult and misdiagnosis may be as high as 43%. Recent advances in neuroimaging suggest a solution. Both functional magnetic resonance imaging and electroencephalography have been used to detect residual cognitive function in vegetative and minimally conscious patients. Neuroimaging may improve diagnosis and prognostication. These techniques (...) are beginning to be applied to comatose patients soon after injury. Evidence of preserved cognitive function may predict recovery, and this information would help families and health providers. Complex ethical issues arise due to the vulnerability of patients and families, difficulties interpreting negative results, restriction of communication to “yes” or “no” answers, and cost. We seek to investigate ethical issues in the use of neuroimaging in behaviorally nonresponsive patients who have suffered serious brain injury. The objectives of this research are to: (1) create an approach to capacity assessment using neuroimaging; (2) develop an ethics of welfare framework to guide considerations of quality of life; (3) explore the impact of neuroimaging on families; and, (4) analyze the ethics of the use of neuroimaging in comatose patients. (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)

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)

Fibromyalgia is characterised by chronic, continuous, widespread pain, often associated with a sense of fatigue, non-restorative sleep and physical exhaustion. Due to the nature of this condition and the absence of other neurological issues potentially able to induce disorders in body representations per se, it represents a perfect model since it provides an opportunity to study the relationship between pain and the bodily self. Corporeal illusions were investigated in 60 participants with or without a diagnosis of FM by means of (...) an ad hoc devised interview. In addition, motor imagery was investigated and illusions relating to body part movements and changes in body size, feelings of alienness, and sensations of body parts not belonging to one’s own body were found. Crucially, these symptoms do not correlate with any of the clinical measures of pain or functional deficits. The results showed that motor imagery was also impaired, and the severity of the deficits found correlated with the functional impairment of the participant. This indicates that disorders in body representations and motor imagery are part of the clinical expression of FM. However, while motor imagery seems to be linked to reduced autonomy and functional deficits, bodily illusions are independent and potentially represent a concurrent symptom. (shrink)

:Long-term patient outcomes after severe brain injury are highly variable, and reliable prognostic indicators are urgently needed to guide treatment decisions. Functional neuroimaging is a highly sensitive method of uncovering covert cognition and awareness in patients with prolonged disorders of consciousness, and there has been increased interest in using it as a research tool in acutely brain injured patients. When covert awareness is detected in a research context, this may impact surrogate decisionmaking—including decisions about life-sustaining treatment—even though the prognostic value (...) of covert consciousness is currently unknown. This paper provides guidance to clinicians and families in incorporating individual research results of unknown prognostic value into surrogate decisionmaking, focusing on three potential issues: Surrogate decisionmakers may misinterpret results; Results may create false hope about the prospects of recovery; There may be disagreement about the meaningfulness or relevance of results, and appropriateness of continued care. (shrink)