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Phenomenology of the Locked-In Syndrome: an Overview and Some Suggestions

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Abstract

There is no systematic knowledge about how individuals with Locked-in Syndrome (LIS) 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 (QOL) 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.

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Notes

  1. There are no official figures. In Orphanet, the portal for rare diseases and orphan drugs, its prevalence is estimated at <1/1,000,000 (https://www.orpha.net/consor/cgi-bin/OC_Exp.php?Lng=GBandExpert=2406; reviewed by Marie-Aurélie Bruno and Steven Laureys, last updated in December 2012). Using a functional (rather than etiological) definition of LIS, Dutch researchers calculated for the Netherlands a prevalence of 0.73 cases per 100,000 inhabitants [168], and in a survey of all Dutch long-term care organizations, prevalence of classic LIS was found to be 0.7/10,000 [109].

  2. In contrast, about 50% of individuals with ALS will exhibit cognitive deficits (e.g. [74, 169]). This is clearly relevant for a comparative phenomenology of LIS (vascular vs. neurodegenerative etiology).

  3. The notion of autonomy appears several times in this article. It has slightly different meanings depending on the framework being discussed, but it is always presented as a value, and as a constitutive feature of personhood whose core is the individual’s self-conscious ability to freely govern himself or herself. In neuroethics and biomedical ethics, it refers mainly to the capacity to choose or renounce treatment with full assumption of individual responsibility. Phenomenological approaches imply that the quality of being a person includes, but is irreducible to that kind of autonomy. The “enactivist” and constructivist interpretation of LIS argues that autonomy results from intersubjective relations. Beyond circumstances of extreme dependency such as LIS, the relational viewpoint seems particularly relevant to end-of-life decisions in intensive care, where it may be considered that the loss of decision-making capacity does not put an end to autonomy and personhood (e.g. [222]). These various usages are generally consistent with the first general principle of the United Nations Convention on the Rights of Persons with Disabilities, also mentioned below, which reads: “Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons.” The stress on individual autonomy as a crucial feature of personhood is a modern development of the Western tradition, which can be contrasted to the situation in other cultures (we here mention Japan). For an overview of the concept, see Christman [41].

  4. See Fins and Schiff [67] for a recent statement of this position. Neuroimaging and electroencephalography have been used for assessing awareness by seeking to prompt and register the voluntary modulation of brain activity, and electroencephalographic methods have been employed for establishing neurophysiological measures that may provide indications about the future improvement of consciousness in patients diagnosed as vegetative [16, 195].

  5. Kondziella [112] claims that Roald Dahl’s 1959 story “William and Mary” describes complete LIS and predicts recent successes in detecting covert awareness. However, the story (which I have often used in my teaching) is about William’s brain kept alive in a vat, with one of his eyes connected to it; thus, even though William is told that he will be able to communicate thanks to an encephalograph-like device, the lack of a full body marks a considerable subjective, intersubjective and philosophical difference between William’s vital circumstances and those of a locked-in person. We meet here the well-known limits of thought experiments [226].

  6. Tavalaro’s story is in this respect analogous to Martin Pistorius’ (born 1975). Aged 12, Pistorius fell into a vegetative-like state of unidentified origin, began regaining consciousness about 4 years later, and was fully conscious at around age 19. It took about six more years before a caregiver noticed and convinced his family to have him systematically assessed for cognitive capacity and communicative potential [171, 172]. Andrea Ostrum (1941-1994), who suffered traumatic brain injury in 1985, underwent a different yet related kind of ordeal. She was discovered to be locked-in after several months, when a court required evaluation before her feeding tube could be removed. She thus lived – but only to enter “a nightmare that was worse.” She writes: “.. . although I had injured my brainstem. .. I did not conform to the other distinguishing textbook characteristics [of traumatic brain injury]. .. . in my thoughts and my core identity, I was my old self.. .. Now, because I was trapped in a badly injured body and because the medical books said it was not possible, I no longer existed. For 3 years, I was addressed by every new person as if I weren’t in my right mind. .. .” ([160], 97). In a less angry testimony, she observed that many people regard the brain-damaged “as a species apart,” and defended their right to “be treated as individuals, not textbook cases. After all ‘if you prick us do we not bleed’?” ([159], 624).

  7. Hawking is on the Wikipedia “List of people with locked-in syndrome,” and the “continuity of his brilliant productivity” is said to confirm that locked-in persons “can be productive members of society” ([124], 497). Media coverage, however, does not usually associate Hawking with LIS, and neither does a major study on how he became an icon of the lonely genius and the disembodied mind [144].

  8. Over 300,000 copies had been sold by January 1998 (http://www.lepoint.fr/actualites-litterature/2007-01-25/majuscules/1038/0/88082#); a number of Internet sources (e.g. http://www.critiqueslibres.com/i.php/vcrit/3864) report sales of over a million copies and translations into 23 languages.

  9. http://www.bbc.com/culture/story/20160819-the-21st-centurys-100-greatest-films. In my (admittedly limited) experience, many people have heard of LIS only through Schnabel’s film. They often relate it to Alejandro Amenábar’s Mar adentro (The Sea Inside, 2004), which is based on the life of Ramón Sampedro (1943-1998). For decades, Sampedro, who was not locked-in but remained quadriplegic in 1968 due to a diving accident, unsuccessfully fought for the right to commit assisted suicide in Spanish and European courts.

  10. I thank Dr. Kawaguchi for providing me with an English translation of two chapters from her book [101]. Murakami translates the title differently, as Le corps qui ne meurt pas – Vivre la vie quotidienne du SLA (The Body That Does Not Die: Living Day to Day with ALS).

  11. Williams [227] updates the notion of “biographical disruption,” emphasizing that it is only one of the ways in which chronic illness can become integrated into a person’s life.

  12. I thank Dr. Stewart for kindly sending me a copy of his dissertation.

  13. Born in 1958, Philippe Vigand entered the locked-in state after suffering a stroke in 1990. He lives at home and communicates via computer or a blinking code. At the time of the CVA, he and his wife Stéphane had two small daughters; a son was born in 1992. His memoir Only the eyes say yes: A love story (Putain de silence, 1997), was published the same year as Bauby’s and Tavalaro’s; one half was written by him, the other by Stéphane. Philippe Vigand has since then published three other books. The lives of Bauby and Tavalaro have been sketched above.

  14. The analysis of commonalities occupies the entire chapter 2 of the dissertation. Stewart does not discuss the relationship between fiction and non-fiction, but plays down the difference, for example when he writes that, of various characters, “Bauby and Bonham are the most amusing” (2012, 31).

  15. “Quality of life” is by definition based on self-assessment. The World Health Organization defines it “as an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns,” and adds, “It is a broad ranging concept affected in a complex way by the person’s physical health, psychological state, personal beliefs, social relationships and their relationship to salient features of their environment.” http://www.who.int/healthinfo/survey/whoqol-qualityoflife/en/ Last accessed on 4 October 2018.

  16. These factors, however, do not suffice to sustain the desire to live; an example is the well-publicized case of Tony Nicklinson, an ALS locked-in patient who let himself die after losing his legal battle in favor of assisted suicide [22].

  17. LIS surfaces more marginally in objections the whole-brain definition of death, which emphasizes the role of the brain in maintaining the integrated functioning of the organism as a whole (the cessation of which defines death). It is noted that some integrative functions do not require the whole brain, and that the brains of LIS patients “appear to have no more integrative effects on their bodies than those of brain-dead individuals, and yet locked-in patients are undoubtedly alive” ([210], 531). These two objections have not led to the abandonment of the whole-brain criterion, but moved it away from justification on the basis of the brain’ s integrative function.

  18. See the documents available under http://www.locked-in-syndrom.org/patientenverfuegungen.htm, as well as the article “Patientenverfügung aus Sicht der Betroffenen,” www.locked-in-syndrom.org/presse-not-1-2009.pdf. Last accessed on 4 October 2018.

  19. https://www.mcgill.ca/tcpsych/research/cmhru/mini. Last accessed on 30 July 2018.

  20. Quoted from the e-book text, therefore without page number. The quotation comes from the beginning of ch. 2, “Night,” originally published in the New York Review of Books of 14 January 2010.

  21. In 2016, California’s Senate Bill 589 amended the state’s election code to expand the number of citizens with disabilities who can retain or regain voting rights. At first sight, LIS should be in this framework less problematic than conditions involving cognitive disabilities; that, however, has not been the case. David Rector, a locked-in person, was initially denied voting rights, but was able to recover them in time for the 2016 election. Yet his success is by no means the norm, and the battle against the disenfranchisement of people with disabilities continues. Rector has become the lead individual in the class action suit filed with the US Department of Justice by the Spectrum Institute, a disability rights organization, for California’s failure to restore voting rights in a timely manner. On Rector’s case and more generally, see [140] and [202].

  22. I carried out research for this article and began a first draft as Visiting Researcher at the Fondation Brocher (Hermance-Geneva, Switzerland). I thank the Foundation and its staff for their support, as well as my fellow visitors for their friendly and stimulating companionship.

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  1. ICREA (Catalan Institution for Research and Advanced Studies), Barcelona / Medical Anthropology Research Center, Universitat Rovira i Virgili, Av. Catalunya 35, 43005, Tarragona, Catalonia, Spain

    Fernando Vidal

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Vidal, F. Phenomenology of the Locked-In Syndrome: an Overview and Some Suggestions. Neuroethics 13, 119–143 (2020). https://doi.org/10.1007/s12152-018-9388-1

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