From armchair to wheelchair: How patients with a locked-in syndrome integrate bodily changes in experienced identity

Nizzi, Marie-Christine; Demertzi, Athena; Gosseries, Olivia; Bruno, Marie-Aurélie; Jouen, François; Laureys, Steven

doi:10.1016/j.concog.2011.10.010

Cited by 36 publications

(33 citation statements)

References 36 publications

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“…One explanation would be that the preference not to undergo life-prolonging treatment stems from the fear of a profound identity change due to modified body image. In other words, when healthy individuals would imagine their bodies severely paralyzed in LIS, they would report a discontinuity in their personal identity after the imagined acute loss of motor control [12]. However, patients' bodies continue to live after their accidents, implying that identity in patients in LIS is primarily socially constituted [51,52].…”

Section: Discussionmentioning

confidence: 99%

“…Therefore, if quality of life is based on the perceived value of physical and mental functioning, it is possible that healthy subjects under-estimate patients with chronic disability. Indeed, studies show that, when partners or caregivers rate patients' quality of life, the scores are significantly lower than when patients do it for themselves [12][13][14][15][16][17]. In light of their severe disability, patients' higher self-ratings on quality of life measures is mostly known as the 'disability paradox' [18].…”

Section: Introductionmentioning

confidence: 99%

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A European survey on attitudes towards pain and end-of-life issues in locked-in syndrome

Demertzi

Jox²,

Racine

et al. 2014

Brain Injury

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Objectives: Patients with locked-in syndrome often self-report a higher quality of life than generally expected. This study reports third-person attitudes towards several salient issues on locked-in syndrome. Methods: Close-ended survey among conference attendees from 33 European countries. Analysis included chi-square tests and logistic regressions. Results: From the 3332 respondents (33% physicians, 18% other clinicians, 49% other professions; 47% religious), 90% agreed that patients with locked-in syndrome can feel pain. The majority (75%) disagreed with treatment withdrawal, but 56% did not wish to be kept alive if they imagined themselves in this condition (p50.001). Religious and southern Europeans opposed to treatment withdrawal more often than non-religious (p50.001) and participants from the North (p ¼ 0.001). When the locked-in syndrome was compared to disorders of consciousness, more respondents endorsed that being in a chronic locked-in syndrome was worse than being in a vegetative state or minimally conscious state for patients (59%) than they thought for families (40%, p50.001). Conclusions: Personal characteristics mediate opinions about locked-in syndrome. The dissociation between personal preferences and general opinions underlie the difference in perspective in disability. Ethical responses to dilemmas involving patients with locked-in syndrome should consider the diverging ethical attitudes of stakeholders.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

A European survey on attitudes towards pain and end-of-life issues in locked-in syndrome

Demertzi

Jox²,

Racine

et al. 2014

Brain Injury

Self Cite

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“…One way of making sense of this is by adopting what I would call a cognitive adaptation strategy. In a recent study, Nizzi et al (2012) conducted interviews with LIS patients to assess how the paralysis affected their sense of personal identity. They found that patients can adjust very well to the objective change in physiology and actually “feel the same as before the accident.” According to the authors, this is because the patients maintained a positive subjective “bodily representation” (p. 435).…”

Section: Toward Resolving the Body-social Problemmentioning

confidence: 99%

“…If positive quality of life has to do with a positive self representation then this adjustment strategy can explain why patients feel well despite the paralysis. However, Nizzi et al’s (2012) interpretation seems to presuppose a disembodied view of the self. Whether or not the body is subject to severe objective change plays no role for the patient’s self as long as she consciously decides that it does not.…”

Section: Toward Resolving the Body-social Problemmentioning

confidence: 99%

The body social: an enactive approach to the self

Kyselo

2014

Front. Psychol.

127

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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.

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“…This implies that nonmedical individuals, whose opinions are supposedly represented by media reports, may be biased towards residual cognitive function of patients with consciousness alterations. Such bias could be attributed to the fact that patients' quality of life evaluations are made from the perspective of healthy individuals who tend to underestimate patients' subjective well-being [48]. Indeed, we recently showed that patients in LIS expressed a positive subjective quality of life contrary to what could be expected in this condition [49].…”

Section: Discussionmentioning

confidence: 95%

The Ethics in the Management of Patients with Disorders of Consciousness

Demertzi

2017

Coma and Disorders of Consciousness

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The ethical issues accrued from the study and management of patients with disorders of consciousness are variant and multifaceted. The medical, public and legal controversies are partly shaped by how different people think about pain perception and end of life. Uniform ethical frameworks need to be shaped in order to guide clinicians and caregivers in terms of clinical outcome, prognosis and medical management.

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From armchair to wheelchair: How patients with a locked-in syndrome integrate bodily changes in experienced identity

Cited by 36 publications

References 36 publications

A European survey on attitudes towards pain and end-of-life issues in locked-in syndrome

A European survey on attitudes towards pain and end-of-life issues in locked-in syndrome

The body social: an enactive approach to the self

The Ethics in the Management of Patients with Disorders of Consciousness

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