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A History of the Locked-In-Syndrome: Ethics in the Making of Neurological Consciousness, 1880-Present

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Abstract

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.

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Notes

  1. Gilles Deleuze “Nomadic Thought” in Desert Islands and other Texts, 1953–1974 (Cambridge MA: Semiotext(e)), pp. 252–261, quote on 260–261.

  2. Fred Plum and Jerome B. Posner, Diagnosis of Stupor and Coma (Philadelphia: F. A. Davis Co, [1]), 92–93.

  3. Ibid, 93.

  4. Ibid.

  5. Personal Communication. From Jerome Posner to Stephen T Casper. August 25, 2016. (concealed for anonymity)

  6. See by way of introduction to the literature, Jacyna, L. Stephen. Lost words: narratives of language and the brain, 1825–1926 (Princeton: Princeton University Press, 2009).

  7. Jacyna, L. Stephen, and Stephen T. Casper. The neurological patient in history (Rochester, NY: University Rochester Press, 2012; Casper, Stephen T. The Neurologists: A History of a Medical Specialty in Modern Britain, c. 1789–2000. (Manchester: Manchester University Press, [2]).

  8. Thomas Schlich, “Physiological Surgery”: Laboratory Science as the Epistemic Basis of Modern Surgery and Neurosurgery” in Delia Gavrus and Stephen T. Casper eds. The History of the Brain and Mind Sciences: Technique, Technology, and Therapy(Rochester: Rochester University Press, forthcoming); also see for a similar discussion Todes, Daniel P. Ivan Pavlov: A Russian life in science (Oxford: Oxford University Press, [3]).

  9. On neurological semiology, see Philippon, Jacques, and Jacques Poirier. Joseph Babinski: a biography. (New York: Oxford University Press, [4]). For theory, see Canguilhem, Georges. On the normal and the pathological. Translator Carolyn R. Fawcett. Vol. 3. Springer Science & Business Media, 2012.

  10. Guenther, Katja. Localization and Its Discontents: A Genealogy of Psychoanalysis and the Neuro Disciplines. University of Chicago Press, [5]; Engstrom, Eric J. Clinical psychiatry in imperial Germany: A history of psychiatric practice. Cornell University Press, [6].; Gavrus, Delia. “Skill, Judgement and Conduct for the First Generation of Neurosurgeons, 1900–1930.” Medical history 59, no. 3 (2015): 361; Jacyna, L. Stephen. “Somatic theories of mind and the interests of medicine in Britain, 1850–1879.” Medical History 26, no. 03 [7]: 233–258; Jacyna, L. Stephen. “The physiology of mind, the unity of nature, and the moral order in Victorian thought.” The British journal for the history of science 14, no. 02 [8]: 109–132.

  11. Jacyna, L. Stephen. “The physiology of mind, the unity of nature, and the moral order in Victorian thought.” The British journal for the history of science 14, no. 02 [8]: 109–132; Smith, Roger. “The background of physiological psychology in natural philosophy.” History of Science 11, no. 2 [9]: 75–123; Smith, Roger. “Physiology and psychology, or brain and mind, in the age of CS Sherrington.” The British Psychological Society, [10].

  12. Casper, Stephen T. “History and neuroscience: an integrative legacy.” Isis 105, no. 1 [2]: 123–132.

  13. Bacopoulos-Viau, Alexandra, and Aude Fauvel. “The Patient’s Turn Roy Porter and Psychiatry’s Tales, Thirty Years on.” Medical history 60, no. 01 [11]: 1–18.

  14. Jewson, Nicholas D. “The disappearance of the sick-man from medical cosmology, 1770–1870.” Sociology 10, no. 2 [12]: 225–244; Jewson, Nicholas D. “Medical knowledge and the patronage system in eighteenth century England.” Sociology 8, no. 3 [13]: 369–385; Burnham, John C. “The death of the sick role.” Social history of medicine 25, no. 4 [14]: 761–776.

  15. Porter, Roy. “The patient’s view.” Theory and society 14, no. 2 [15]: 175–198.

  16. Jacyna, L. Stephen, and Stephen T. Casper. The neurological patient in history (Rochester, NY: University Rochester Press, [16]; Stiles, Anne. Popular fiction and brain science in the late nineteenth century. Vol. 78. Cambridge University Press, [17]; Killen, Andreas. Berlin Electropolis: shock, nerves, and German modernity. Vol. 38. Univ of California Press, [18]; and more broadly and theoretically Leys, Ruth. “How did fear become a scientific object and what kind of object is it?.” Representations 110, no. 1 [19]: 66–104.

  17. Pernick, Martin S. “Brain death in a cultural context.” In. Stuart J Younger, Robert M. Arnold, and Renie Schapiro. The Definition of Death: Contemporary Controversies (Baltimore: Johns Hopkins University Press, [20]), 3–33.

  18. The historical literature on “locked-in-syndrome” is surprisingly sparse. One study is Haan, Joost. “Locked-in: The Syndrome as Depicted in Literature.” Literature, Neurology, and Neuroscience: Neurological and Psychiatric Disorders 206 [21]: 19–34.

  19. Ibid. 2

  20. For an extensive commentary see: Richards, Robert J. Darwin and the emergence of evolutionary theories of mind and behavior. University of Chicago Press, [22]; Stocking, George. Victorian anthropology. Simon and Schuster, 1991; Hale, Piers J. Political descent: Malthus, mutualism, and the politics of evolution in Victorian England. University of Chicago Press, [23].

  21. Jackson, J. Hughlings. “The Croonian lectures on evolution and dissolution of the nervous system.” British medical journal 1, no. 1215 [24]: pp. 703–4.

  22. Judson Bury, Diseases of the Nervous System (Manchester: University Press, [25]), p. 86.

  23. Kroker, Kenton. “Epidemic encephalitis and American neurology, 1919–1940.” Bulletin of the History of Medicine 78, no. 1 [26]: 108–147.

  24. Kroker, Kenton. The sleep of others and the transformations of sleep research. University of Toronto Press, [27], pp. 205–255.

  25. Gavrus, Delia. “Men of dreams and men of action: neurologists, neurosurgeons, and the performance of professional identity, 1920–1950.” Bulletin of the History of Medicine 85, no. 1 [28]: 57–92.

  26. A sample literature includes Fulton, John Farquhar, and Percival Bailey. “Tumors in the region of the third ventricle: their diagnosis and relation to pathological sleep.” The Journal of Nervous and Mental Disease 69, no. 2 [29]: 145–164; Economo, C. V. “Sleep as a problem of localization.” The Journal of Nervous and Mental Disease 71, no. 3 [30]: 249–259; Penfield, Wilder. “The cerebral cortex in man: I. The cerebral cortex and consciousness.” Archives of Neurology & Psychiatry 40, no. 3 [31]: 417–442; Ranson, S. W. “Somnolence caused by hypothalamic lesions in the monkey.” Archives of Neurology & Psychiatry 41, no. 1 [32]: 1–23; Dandy, W. E. “The location of the conscious center in the brain; the corpus striatum.” Bulletin of the Johns Hopkins Hospital 79 [33]: 34–58; Meyers, Russell. “Dandy’s striatal theory of the center of consciousness: Surgical Evidence and Logical Analysis Indicating Its Improbability.” AMA Archives of Neurology & Psychiatry 65, no. 6 [34]: 659–671; Alford, Leland B. “The localization of the mental functions; a new conception.” Southern medical journal 43, no. 3 [35]: 262; Brockman, Nokman W. “Site of minimal lesion to produce coma.” Bulletin of the Los Angeles Neurological Society 11, no. 1–2 [36]: 90–91; Thompson, G. N., and J. M. Nielsen. “Area essential to consciousness. Cerebral localization of consciousness as established by neuropathological studies.” J Am Med Ass 137 [37]: 285.

  27. This is perhaps the essential intellectual context for locating the work of Paul Maclean. See, for example, MacLean, Paul D. “The triune brain in conflict.” Psychotherapy and Psychosomatics 28, no. 1–4 [38]: 207–220.

  28. Gowers, William Richard. The Border-land of Epilepsy: Faints, Vagal Attacks, Vertigo, Migraine, Sleep Symptons, and Their Treatment. P. Blakiston’s son & Company, [39], p. 34.

  29. See, for example, Ryle, John A. “Angor animi, or the sense of dying.” Guy’s Hospital Reports 99, no. 4 [40]: 230.

  30. French, John D. “Brain lesions associated with prolonged unconsciousness.” AMA Archives of Neurology & Psychiatry 68, no. 6 [41]: 727–740, see particularly his comments on 735–736.

  31. Cairns, Hugh. “Disturbances of consciousness with lesions of the brain-stem and diencephalon.” Brain 75, no. 2 [42]: 109–146; There is also, it is important to note, a very broad military background to these studies. See See Lynsey Shaw, “Neuropsychiatry and the Management of Aerial Warfare: The Royal Air Force Neuropsychiatric Division in the Second World War.” PhD Dissertation, University of Oxford, [43].

  32. Ibid. 110.

  33. Ibid. 140.

  34. Ibid. 144.

  35. See, for some discussion, Goodman, Susan. Spirit of stoke Mandeville: the story of Sir Ludwig Guttmann. Collins, [44]; Anderson, Julie. “Turned into taxpayers’: Paraplegia, rehabilitation and sport at Stoke Mandeville, 1944–56.” Journal of contemporary history 38, no. 3 [45]: 461–475. On intensive care wards, see Alice Nicholls, “Life in the Balance: Critical Illness and British Intensive Care, 1948–1986″ Doctoral Dissertation. University of Manchester, [46]; on technology in the hospital, see Reiser, Stanley Joel. Medicine and the Reign of Technology. Cambridge University Press, [8]; Joel D. Howell, Technology in the Hospital: Transforming Patient Care in the Early Twentieth Century (Baltimore and London: Johns Hopkins University Press, [47]); Ilana Lowy, Between Bench and Bedside: Science Healing and Interleukin-2 in a Cancer Ward (Cambridge, MA: Harvard University Press, [48]); for sociological contemplations, see Keating, Peter, and Alberto Cambrosio. Biomedical platforms: realigning the normal and the pathological in late-twentieth-century medicine. MIT Press, [49]; and a broad-minded review, Stanton, Jennifer. “Making sense of technologies in Medicine.” Social History of Medicine 12, no. 3 [50]: 437–448.

  36. Snider, Gordon L. “Historical perspective on mechanical ventilation: from simple life support system to ethical dilemma.” Am Rev Respir Dis 140, no. 2 [51]: S2-S7.

  37. Among the first neurological investigations that I have seen mentioning automobile injuries is Schaller, Walter F. [52] “After-Effects of Head Injury: The Post-Traumatic Concussion State (Concussion, Traumatic Encephalopathy) and the Post-Traumatic Psychoneurotic State (Psychoneuroses, Hysteria): A Study in Differential Diagnosis.” Journal of the American Medical Association 113 [13]: 1779–1785. Schaller’s essay was followed by extensive literature, mainly on automobile and motorcylce accidents. See Hugh Cairns. See [53]. “Head Injuries in Motor-Cyclists: The Importance of the Crash Helmet.” British Medical Journal 2 (4213): 465–471.

  38. Teasdale, Graham, and Bryan Jennett. “Assessment of coma and impaired consciousness: a practical scale.” The Lancet 304, no. 7872 [54]: 81–84.

  39. “A definition of irreversible coma: report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death”. Journal of the American Medical Association. 205: 337–40. [56].

  40. Vidal, Fernando. “Brainhood, anthropological figure of modernity.” History of the human sciences 22, no. 1 [57]: 5–36.

  41. See Rose, Nikolas S., and Joelle M. Abi-Rached. Neuro: The new brain sciences and the management of the mind. Princeton University Press, [58], who are fine on this point (if less original than they imagine they are), but also see my review of their book for a critical discussion of its limits. Casper, Stephen T. “Review of Nikolas Rose and Joelle M. Abi-Rached. Neuro: The New Brain Sciences and the Management of the Mind.” Journal of the History of the Behavioral Sciences 51, no. 1 [5]: 95–98.

  42. Jennett, Bryan, and Fred Plum. “Persistent vegetative state after brain damage: a syndrome in search of a name.” The Lancet 299, no. 7753 [55]: 734–737.

  43. NB It is unclear whether Jennet and Plum adopted the term vegetative precisely because it fit within this observable taxonomy of consciousness, or whether it made sense to them to do so for reasons they did not apprehend. Their own language in the article makes it seem that it was intentional, but Joseph Fins and Nicholas Schiff at Weir Cornell Medical School recall Plum suggesting that it was more serendipitous than epistemological.

  44. Jennett, Bryan, and Fred Plum. “Persistent vegetative state after brain damage: a syndrome in search of a name.” The Lancet 299, no. 7753 [55]: 734–737. p. 736.

  45. Ibid.

  46. Ibid.

  47. One should not take it the analogy too far, of course. Hughlings Jackson, John. “On the evolution and dissolution of the nervous system. Croonian lectures 3, 4 and 5 to the Royal Society of London.” Lancet 1 [24]: 555–558,649–652, and 739–744, observed that it was to the whole organism that it was necessary to look to begin to have an understanding of the physical basis of consciousness. See the bottom right column of page 739.

  48. Cairns, Hugh, R. C. Oldfield, J. B. Pennybacker, and D. Whitteridge. “Akinetic mutism with an epidermoid cyst of the 3rd ventricle.” Brain 64, no. 4 [59]: 273–290.

  49. Ibid, 274–279.

  50. Cravioto, Humberto, Jacobo Silberman, and Irwin Feigin. “A clinical and pathologic study of akinetic mutism.” Neurology 10 [60]: 10–21. p. 10

  51. Ibid. 19

  52. Ibid. 20

  53. Valenstein, E. “Nonlanguage disorders of speech reflect complex neurologic apparatus.” Geriatrics 30, no. 9 [61]: 117–121, p. 118

  54. Kaada, B. R., W. Harkmark, and O. Stokke. “Deep coma associated with desynchronization in EEG.” Electroencephalography and Clinical Neurophysiology 13, no. 5 [62]: 785–789, 788.

  55. Russell, W. Ritchie. The traumatic amnesias. (Oxford: Oxford University Press, [63]).

  56. This is certainly a problem at the heart of the original study. Cairns, Hugh, R. C. Oldfield, J. B. Pennybacker, and D. Whitteridge. “Akinetic mutism with an epidermoid cyst of the 3rd ventricle.” Brain 64, no. 4 [59]: 273–290.

  57. One of the few papers discussing such states of consciousness did so in an historical exploration of the work of Hughlings Jackson, contemporaneously to these discussions of coma, stupor, mutism, and locked-in states. See Levin, Max. “The Mind-Brain Problem and Hughling Jackson’s Doctrine of Concomitance,” American Journal of Psychiatry 116 no 8 [64]: 718–722.

  58. Hawkes, C. H. ““Locked-in” syndrome: report of seven cases.” Br Med J 4, no. 5941 [65]: 379–382.

  59. Markand, Omkar N. “Electroencephalogram in “locked-in” syndrome.” Electroencephalography and clinical neurophysiology 40, no. 5 [66]: 529–534, p. 529.

  60. There are few historical studies of intensive care units. See Alice Nicholls, “Life in the Balance: Critical Illness and British Intensive Care, 1948–1986” Doctoral Dissertation. University of Manchester, [46]; see also M. Hilberman, ‘The Evolution of Intensive Care Units”, Critical Care Medicine 3 [67], 159–65; and Stanley J. Reiser, ‘The Intensive Care Unit: The Unfolding and Ambiguities of Survival Therapy” International Journal of Technology Assessment in Health Care, 8 [68], 382–94.

  61. Cappa, Stefano F., and Luigi A. Vignolo. “Locked-in syndrome for 12 years with preserved intelligence.” Annals of neurology 11, no. 5 [69]: 545–545.

  62. Hawkes, BMJ, [65], p. 382

  63. It is rather fascinating to note that the locked-in patient reversed questions of the place of the motor system in conscious experience that had been a staple of the history of physiology. Nizzi, Marie-Christine, Athena Demertzi, Olivia Gosseries, Marie-Aurélie Bruno, François Jouen, and Steven Laureys. “From armchair to wheelchair: how patients with a locked-in syndrome integrate bodily changes in experienced identity.” Consciousness and cognition 21, no. 1 [70]: 431–437, offers a different view, albeit one mitigated by a low response rate.

  64. Kaada, B. R., W. Harkmark, and O. Stokke. “Deep coma associated with desynchronization in EEG.” Electroencephalography and Clinical Neurophysiology 13, no. 5 [62]: 785–789, 788.

  65. Murphy, Martin J., Douglas W. Brenton, Carol A. Aschenbrener, and John C. Van Gilder. “Locked-in syndrome caused by a solitary pontine abscess.” Journal of Neurology, Neurosurgery & Psychiatry 42, no. 11 [71]:439–441, 441

  66. Halsey, James H., and Allan H. Downie. “Decerebrate rigidity with preservation of consciousness.” Journal of Neurology, Neurosurgery & Psychiatry 29, no. 4 [72]: 350–355.

  67. Markand, Omkar N. “Electroencephalogram in “locked-in” syndrome.” Electroencephalography and clinical neurophysiology 40, no. 5 [66]: 529–534., p. 532

  68. Halsey,James H., and Allan H. Downie. “Decerebrate rigidity with preservation of consciousness.” Journal of Neurology, Neurosurgery & Psychiatry 29, no. 4 [72]: 350–355, p. 352

  69. Allen, C. M. C. “Conscious but paralysed: releasing the locked-in.” The Lancet 342, no. 8864 [73]: 130–131, p. 131

  70. Karz, Richard T., Andrew J. Haig AID, Barbara B. Clark AID, and Rocco J. DiPaola AIS. “Long-term survival, prognosis, and life-care planning for 29 patients with chronic locked-in syndrome.” Archives of Physical Medicine and Rehabilitation 73 [74], 403–408. p. 407

  71. Ibid.

  72. Doble, Jennifer E., Andrew J. Haig, Christopher Anderson, and Richard Katz. “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, no. 5 [75]: 435–444, p. 441.

  73. Birbaumer N, Ghanayim N, Hinterberger T, Iversen I, Kotchoubey B, Kübler A, Perelmouter J, Taub E, Flor H. A spelling device for the paralysed. Nature. [76];398(6725):297; also see Kübler, A., Kotchoubey, B., Kaiser, J., Wolpaw, J. R., & Birbaumer, N. [77]. Brain–computer communication: Unlocking the locked in. Psychological Bulletin, 127 [78], 358–375.

  74. Laureys, Steven, Frédéric Pellas, Philippe Van Eeckhout, Sofiane Ghorbel, Caroline Schnakers, Fabien Perrin, Jacques Berre et al. “The locked-in syndrome: what is it like to be conscious but paralyzed and voiceless?.” Progress in brain research 150 [79]: 495–511.,p. 508.

  75. Doble, Jennifer E., Andrew J. Haig, Christopher Anderson, and Richard Katz. “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, no. 5 [75]: 435–444., p. 442

  76. Chisholm, Nick, and Grant Gillett. “The patient’s journey: living with locked-in syndrome.” British Medical Journal 331, no. 7508 [80]: 94–97, 95.

  77. Chisholm, Nick, and Grant Gillett. “The patient’s journey: living with locked-in syndrome.” British Medical Journal 331, no. 7508 [80]: 94–97.

  78. Ibid. 96

  79. Kushner, Howard. “The Cursing Patient: Neuropsychiatry Confronts Tourette’s Syndrome, 1825–2008.” In Jacyna, L. Stephen, and Stephen T. Casper. Eds. [16]. The neurological patient in history. Rochester, NY: University of Rochester Press, [16]. pp. 129–166.

  80. Perhaps it is possible to offer an expansion on E. P. Thompson’s injunction that consciousness is a thing that is made and see its veracity in this story of the body of the minimally conscious subject. If so, then we also see it at work in the making of a more humane science and medicine by those seeking, as political scientist Sheldon Wolin put it, ever fugitive democracy.

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Acknowledgements

Several groups have contributed to the creation of this paper. Fernando Vidal in particular stimulated its creation through his generous invitation to the ICREA Workshop “Personhood and the Locked-In Syndrome” at the Autonomous University of Barcelona. Equally several scholars at the Richardson Seminar in the History of Psychiatry at Weil-Cornell Medical School offered generous critical observations, including Joseph J. Fins and Nicholas Schiff. Finally, scholars at the Institute for the History of Medicine at Johns Hopkins University read a complete draft of the paper and offered extensive feedback. To all, I express my appreciation.

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    Stephen T. Casper

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Stephen T Casper is currently serving as an expert witness in class action litigation. He receives book royalties from Manchester University Press and the University of Rochester Press. He has been an invited speaker at professional meetings of clinicians and historians.

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Stephen T Casper is currently serving as an expert witness in concussion litigation.

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Casper, S.T. A History of the Locked-In-Syndrome: Ethics in the Making of Neurological Consciousness, 1880-Present. Neuroethics 13, 145–161 (2020). https://doi.org/10.1007/s12152-018-9374-7

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