Personhood and the Locked-In Syndrome

Consciousness and Cognition

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 (LIS) 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: (A) global evaluation of identity, (B) body representation and (C) 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.► In this study we propose an empirical approach to the sense of self in real patients. ► We investigate how bodily changes are integrated in patients’ experienced identity. ► Locked-in patients suffer a full-body paralysis with preserved cognitive functions. ► They report a phenomenological sense of self correlated with body representation. ► Predictions from the armchair fail to match patients’ reports from the wheelchair.

Article, 2022

The theory of psychological persistence defines persons as beings capable of creating a concept of themselves through the continuity in time of their mental states. In debates about life and death of some humans who have lost their conscious faculties, it is discussed whether they are persons or not and, therefore, whether it would be lawful to terminate their lives. The coma is presented as a counterexample to theories of personhood, which justify the right to life on the basis of the psychological persistence of the individual. This right would be granted not in terms of persistence or mental continuity, but by the conditions that make possible its prompt recovery in the clinical framework of the disease.

Neuroethics

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.

MASKA. Anthropology Sociology Culture (ISSN: 1898-5947), 2017

In this article, I seek to conceptualize a phenomenological approach to comatose, vegetative states. In my view, immobility and the absence of responsiveness need not entail the complete absence of personhood. Instead, the commencement of the coma also brings about the transformation and depersonalization of the ill person. Experience, as we know from accounts given by patients who have been revived from comatose states, does not cease. The coma is definitely not a state of living death, at least in most cases. Instead, personality shifts to a mode of dormancy and latency. Relational ontologies such as that of Karen Barad fail to account for hidden potentials, unresponsive entities, and inaccessible agents. Therefore, I propose a phenomenological approach that takes into account depersonalized modes of personhood. Borrowing Roberto Esposito’s concept of the “third person” and the “impersonal”, I seek to identify the comatose body as an impersonality, a liminal mode of personhood that cannot be easily situated upon the continuum of life/death, presence/absence. Impersonality also transforms experience, and is productive of what the literature calls “the feeling of presence.” Such feelings, as enacted in medico-cultural settings, point toward impersonal neutrality that constitutes the ultimate possibility of experience.

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). 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.

2005

The locked-in syndrome (pseudocoma) describes patients who are awake and conscious but selectively deefferented, i.e., have no means of producing speech, limb or facial movements. Acute ventral pontine lesions are its most common cause. People with such brainstem lesions often remain comatose for some days or weeks, needing artificial respiration and then gradually wake up, but remaining paralyzed and voiceless, superficially resembling patients in a vegetative state or akinetic mutism. In acute locked-in syndrome (LIS), eye-coded communication and evaluation of cognitive and emotional functioning is very limited because vigilance is fluctuating and eye movements may be inconsistent, very small, and easily exhausted. It has been shown that more than half of the time it is the family and not the physician who first realized that the patient was aware. Distressingly, recent studies reported that the diagnosis of LIS on average takes over 2.5 months. In some cases it took 4-6 years before aware and sensitive patients, locked in an immobile body, were recognized as being conscious. Once a LIS patient becomes medically stable, and given appropriate medical care, life expectancy increases to several decades. Even if the chances of good motor recovery are very limited, existing eye-controlled, computer-based communication technology currently allow the patient to control his environment, use a word processor coupled to a speech synthesizer, and access the worldwide net. Healthy individuals and medical professionals sometimes assume that the quality of life of an LIS patient is so poor that it is not worth living. On the contrary, chronic LIS patients typically self-report meaningful quality of life and their demand for euthanasia is surprisingly infrequent. Biased clinicians might provide less aggressive medical treatment and influence the family in inappropriate ways. It

Journal of the Royal Anthropological Institute, 2020

Anthropological models of personhood suggest that the individual is produced through relational ties to others, including humans and nonhumans. American ideas about the individual are deeply ideological, obscuring the human relations that make ‘personhood’ a possible, desirable concept that motivates subjection. Attending to neurological disorders and the technologies that attempt to remedy communication impairments shows that not only is the labour of other humans obscured in producing the individual, but so are the facilitating capacities of technologies and institutions. This article focuses on memoirs of disability and ethnographic and historiographic research on neuroscience to show how personhood is facilitated and produced through engagements with people, technologies, and institutions that attempt to render particular forms of subjection through communicative practices.

Ethic@: an International Journal for Moral Philosophy, 2021

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.