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Neuroethics

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Attitudes towards Personhood in the Locked-in Syndrome: from Third- to First- Person Perspective and to Interpersonal Significance

  • Marie-Christine Nizzi
  • Veronique Blandin
  • Athena Demertzi
Original Paper
  • 9 Downloads

Abstract

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 (LIS) 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.

Keywords

Personhood Locked-in syndrome (LIS) Self Attitudes Identity 

Notes

Acknowledgments

We thank the French Association for Locked-in Syndrome (ALIS) for their active collaboration, and in particular Isabelle Lauberthe, who interviewed her 30 fellow LIS respondents. This work was supported by the James S. McDonnell Foundation, the Institut National de la Santé et de la Recherche Medicale (INSERM), and the Belgian National Funds for Scientific Research (FNRS).

References

  1. 1.
    American Congress of Rehabilitation Medicine. 1995. Recommendations for use of uniform nomenclature pertinent to patients with severe alterations of consciousness. Archives of Physical Medicine and Rehabilitation 76: 205–209.Google Scholar
  2. 2.
    Laureys, S., F. Pellas, P. Van Eeckhout, S. Ghorbel, C. Schnakers, F. Perrin, and J. Berré. 2005. The locked-in syndrome : What is it like to be conscious but paralyzed and voiceless? Progress in Brain Research 150: 495–611.CrossRefGoogle Scholar
  3. 3.
    Bauer, G., F. Gerstenbrand, and E. Rumpl. 1979. Varieties of the locked-in syndrome. Journal of Neurology 221: 77–91.CrossRefGoogle Scholar
  4. 4.
    Schnakers, C., S. Goldman, M. Boly, and S. Laureys. 2008. Cognitive function in the locked-in syndrome. Journal of Neurology 255: 323–330.CrossRefGoogle Scholar
  5. 5.
    Ujwal, C., B. Xia, S. Silvoni, L.G. Cohen, and N. Birbaumer. 2017. Brain–computer interface–based communication in the completely locked-in state. PLoS Biology 15.Google Scholar
  6. 6.
    Lulé, D., Zickler, C., Häcker, S., Bruno, M.A., Demertzi, A., Pellas, F., Laureys, S., Kübler., A. 2009. Life can be worth living in locked-in syndrome. Progress in Brain Research 177: 339–351.Google Scholar
  7. 7.
    Demertzi, A., Gosseries, O., Ledoux, D., Laureys, S., Bruno, M. A. 2013. Quality of life and end-of-life decisions after brain injury. In Reframing disability and quality of life, ed. Narelle Warren and Lenore Manderson, 95–110. Dordrecht: Springer.Google Scholar
  8. 8.
    Narelle, W., and L. Manderson. 2013. Reframing disability and quality of life: Contextual nuances. Social indicators research 54. Dordrecht: Springer.Google Scholar
  9. 9.
    Bruno, M.A., J.L. Bernheim, D. Ledoux, F. Pellas, A. Demertzi, and S. Laureys. 2011. A survey on self-assessed well-being in a cohort of chronic locked-in syndrome patients: Happy majority, miserable minority. BMJ Open 1: e000039.CrossRefGoogle Scholar
  10. 10.
    Doble, J.E., A.J. Haig, C. Anderson, and R.T. Katz. 2003. Impairment, activity, participation, life satisfaction, and survival in persons with locked-in syndrome for over a decade: Follow-up on a previously reported cohort. The Journal of Head Trauma Rehabilitation 18: 435–444.CrossRefGoogle Scholar
  11. 11.
    Kübler, A., S. Winter, A.C. Ludolph, M. Hautzinger, and N. Birbaumer. 2005. Severity of depressive symptoms and quality of life in patients with amyotrophic lateral sclerosis. Neurorehabilitation and Neural Repair 19: 182–193.CrossRefGoogle Scholar
  12. 12.
    Whyte, J., D. Katz, D. Long, M.C. DiPasquale, M. Polansky, K. Kalmar, and J. Giacino. 2005. Predictors of outcome in prolonged posttraumatic disorders of consciousness and assessment of medication effects: A multicenter study. Archives of Physical Medicine and Rehabilitation 86: 453–462.CrossRefGoogle Scholar
  13. 13.
    Albrecht, G.L., and P.J. Devlieger. 1999. The disability paradox: High quality of life against all odds. Social Science & Medicine 48: 977–988.CrossRefGoogle Scholar
  14. 14.
    Varela, F. J., Thompson, E. and Rosch, E. 1991. The embodied mind : Cognitive science and human experience. MIT Press.Google Scholar
  15. 15.
    Blanke, O., and Metzinger, T. 2008. Full-body illusions and minimal phenomenal selfhood. Trends in Cognitive Sciences. Elsevier Ltd: 1–7.Google Scholar
  16. 16.
    Blanke, O., T. Landis, L. Spinelli, and M. Seeck. 2004. Out-of-body experience and autoscopy of neurological origin. Brain 127 (Pt 3): 719.Google Scholar
  17. 17.
    Pacherie, E. 2008. The phenomenology of action: A conceptual framework. Cognition 107: 179–217.CrossRefGoogle Scholar
  18. 18.
    Seth, A.K., K. Keisuke Suzuki, and H.D. Critchley. 2012. An interoceptive predictive coding model of conscious presence. Frontiers in Psychology 2: 395.CrossRefGoogle Scholar
  19. 19.
    Seth, A.K. 2013. Interoceptive inference, emotion, and the embodied self. Trends in Cognitive Sciences 17: 565–573.CrossRefGoogle Scholar
  20. 20.
    Geschwind, D. H., Iacoboni, M., Mega, M. S., Zaidel, D. W., Cloughesy, T., Zaidel, E. 1995. Alien hand syndrome: Interhemispheric motor disconnection due to a lesion in the midbody of the corpus callosum. Neurology 45. Lippincott Williams & Wilkins: 802–8.Google Scholar
  21. 21.
    Nizzi, M-C., Demertzi, A., Gosseries, O., Bruno, M-A., Jouen, F., Laureys, S. 2012. From armchair to wheelchair: How patients with a locked-in syndrome integrate bodily changes in experienced identity. Consciousness and cognition 21. Elsevier Inc.: 431–7.Google Scholar
  22. 22.
    Demertzi, A., R.J. Jox, E. Racine, and S. Laureys. 2014. A European survey on attitudes towards pain and end-of-life issues in locked-in syndrome. Brain Injury 28: 1209–1215.CrossRefGoogle Scholar
  23. 23.
    Chisholm, N., and G. Gillett. 2005. The patient’s journey: Living with locked-in syndrome. British Medical Journal 331: 94–97.CrossRefGoogle Scholar
  24. 24.
    Racine, E., R. Amaram, and M. Seidler. 2011. Media coverage of the persistent vegetative state and end-of-life decision-making. Neurology 71 (13): 1027–1032.CrossRefGoogle Scholar
  25. 25.
    Laureys, S., G.G. Celesia, F. Cohadon, J. Lavrijsen, J. León-Carrión, W.G. Sannita, and L. Sazbon. 2010. Unresponsive wakefulness syndrome: A new name for the vegetative state or apallic syndrome. BMC Medicine 8: 68.CrossRefGoogle Scholar
  26. 26.
    Kahane, G., and J. Savulescu. 2009. Brain damage and the moral significance of consciousness. Journal of Medicine and Philosophy 34: 6–26.Google Scholar
  27. 27.
    Gipson, J., G. Kahane, and J. Savulescu. 2014. Attitudes of lay people to withdrawal of treatment in brain damaged patients. Neuroethics 7: 1–9.CrossRefGoogle Scholar
  28. 28.
    US National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. 1979. The Belmont report. Ethical principles and guidelines for the protection of human subjects of research. Washington DC: U.S. Government Printing Office.Google Scholar
  29. 29.
    Report of the Ethics and Humanities Subcommittee of the American Academy of Neurology. 1993. Position statement: Certain aspects of the care and management of profoundly and irreversibly paralyzed patients with retained consciousness and cognition. Neurology 43: 222–223.CrossRefGoogle Scholar
  30. 30.
    Kyselo, M. 2013. Locked-in syndrome and BCI - towards an enactive approach to the self. Neuroethics 6: 579–591.CrossRefGoogle Scholar
  31. 31.
    Demertzi, A., E. Racine, A. Bruno, D. Ledoux, O. Gosseries, A. Vanhaudenhuyse, M. Thonnard, A. Soddu, G. Moonen, and S. Laureys. 2013. Pain perception in disorders of consciousness: Neuroscience, clinical care, and ethics in dialogue. Neuroethics 6: 37–50.CrossRefGoogle Scholar
  32. 32.
    Séguin, P., A. Moulin, L. Fornoni, J. Mattout, E. Maby, B. Lapin, V. Blandin, and P. Giraux. 2016. Retrospective study of the acute period of locked-in syndrome: Consciousness recovery and communication restoration. Annals of Physical and Rehabilitation Medicine 59: 151–152.CrossRefGoogle Scholar
  33. 33.
    Kitwood, T., and K. Bredin. 1992. Towards a theory of dementia care: personhood and well-being. Aging Soc 12: 269–87.Google Scholar
  34. 34.
    Mounier, E. 1949. Le Personnalisme, Collection Que sais-je ?, no 395, Les Presses Universitaires de France, Paris, 136 pages.Google Scholar

Copyright information

© Springer Nature B.V. 2018

Authors and Affiliations

  1. 1.Department of PsychologyHarvard UniversityCambridgeUSA
  2. 2.UFR de Psychologie, Laboratoire PSITEC, EA 4072Université Lille 3Villeneuve d’AscqFrance
  3. 3.Association ALISBoulogneFrance
  4. 4.INSERM, U 1127ParisFrance
  5. 5.Hôpital Pitié-SalpêtrièreInstitut du Cerveau et de la Moelle épinièreParisFrance
  6. 6.Coma Science Group, GIGA Research InstituteUniversity of LiègeLiègeBelgium

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