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Memory During the Presumed Vegetative State: Implications for Patient Quality of Life

Published online by Cambridge University Press:  07 September 2020

NICOLA TAYLOR ,
MACKENZIE GRAHAM ,
MARK DELARGY  and
LORINA NACI
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Abstract

A growing number of studies show that a significant proportion of patients, who meet the clinical criteria for the diagnosis of the vegetative state (VS), demonstrate evidence of covert awareness through successful performance of neuroimaging tasks. Despite these important advances, the day-to-day life experiences of any such patient remain unknown. This presents a major challenge for optimizing the patient’s standard of care and quality of life (QoL). We describe a patient who, following emergence from a state of complete behavioral unresponsiveness and a clinical diagnosis of VS, reported rich memories of his experience during this time. This case demonstrates the potential for a sophisticated mental life enabled by preserved memory in a proportion of patients who, similarly, are thought to be unconscious. Therefore, it presents an important opportunity to examine the implications for patient QoL and standard of care, both during the period of presumed unconsciousness and after recovery.

Keywords

disorders of consciousnessvegetative statecovert awarenesspreserved cognitionmemoryrecoverystandard of carequality of life
Type
Articles
Information
Cambridge Quarterly of Healthcare Ethics , Volume 29 , Special Issue 4: Clinical Neuroethics , October 2020 , pp. 501 - 510
Copyright
© The Author(s), 2020. Published by Cambridge University Press

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References

Notes

1. Multi-Society Task Force on PVS. Medical aspects of the persistent vegetative state. New England Journal of Medicine 1994;330(21):1499–508.Google Scholar

2. Laureys, S, Celesia, GG, Cohadon, F, Lavrijsen, J, León-Carrión, J, Sannita, WG, et al. Unresponsive wakefulness syndrome: A new name for the vegetative state or apallic syndrome. BMC Medicine 2010;8(1):68.CrossRefGoogle ScholarPubMed

3. Bauer, G, Gerstenbrand, F, Rumpl, E. Varieties of the locked-in syndrome. Journal of Neurology 1979;221(2):77–91.CrossRefGoogle ScholarPubMed

4. Schnakers, C, Vanhaudenhuyse, A, Giacino, J, Ventura, M, Boly, M, Majerus, S, et al. Diagnostic accuracy of the vegetative and minimally conscious state: Clinical consensus versus standardized neurobehavioral assessment. BMC Neurology 2009;9(1):35.CrossRefGoogle ScholarPubMed

5. Andrews, K, Murphy, L, Munday, R, Littlewood, C. Misdiagnosis of the vegetative state: Retrospective study in a rehabilitation unit. BMJ 1996;313(7048):13–6.CrossRefGoogle Scholar

6. Childs, NL, Mercer, WN, Childs, HW. Accuracy of diagnosis of persistent vegetative state. Neurology 1993;43(8):1465.Google ScholarPubMed

7. Naci, L, Haugg, A, MacDonald, A, Anello, M, Houldin, E, Naqshbandi, S, et al. Functional diversity of brain networks supports consciousness and verbal intelligence. Scientific Reports 2018;8(1):1–15.Google ScholarPubMed

8. Naci, L, Sinai, L, Owen, AM. Detecting and interpreting conscious experiences in behaviorally non-responsive patients. Neuroimage 2017;145:304–13.CrossRefGoogle ScholarPubMed

9. Gibson, RM, Chennu, S, Fernández‐Espejo, D, Naci, L, Owen, AM, Cruse, D. Somatosensory attention identifies both overt and covert awareness in disorders of consciousness. Annals of Neurology 2016;80(3):412–23.CrossRefGoogle ScholarPubMed

10. Naci, L, Graham, M, Owen, AM, Weijer, C. Covert narrative capacity: Mental life in patients thought to lack consciousness. Annals of Clinical and Translational Neurology 2016;4(1):61–70.CrossRefGoogle ScholarPubMed

11. Peterson, A, Norton, L, Naci, L, Owen, AM, Weijer, C. Toward a science of brain death. The American Journal of Bioethics 2014;14(8):29–31.Google Scholar

12. Naci, L, Cusack, R, Anello, M, Owen, AM. A common neural code for similar conscious experiences in different individuals. Proceedings of the National Academy of Sciences 2014;111(39):14277–82.CrossRefGoogle ScholarPubMed

13. Fernández-Espejo, D, Owen, AM. Detecting awareness after severe brain injury. Nature Reviews Neuroscience 2013;14(11):801.CrossRefGoogle ScholarPubMed

14. Naci, L, Owen, AM. Making every word count for nonresponsive patients. JAMA Neurology 2013;70(10):1235–41.Google ScholarPubMed

15. Bardin, JC, Fins, JJ, Katz, DI, Hersh, J, Heier, LA, Tabelow, K, et al. Dissociations between behavioural and functional magnetic resonance imaging-based evaluations of cognitive function after brain injury. Brain 2011;134(3):769–82.CrossRefGoogle ScholarPubMed

16. Cruse, D, Chennu, S, Chatelle, C, Bekinschtein, TA, Fernández-Espejo, D, Pickard, JD, et al. Bedside detection of awareness in the vegetative state: A cohort study. The Lancet 2011;378(9809):2088–94.CrossRefGoogle ScholarPubMed

17. Owen, AM, Coleman, MR, Boly, M, Davis, MH, Laureys, S, Pickard, JD. Detecting awareness in the vegetative state. Science 2006;313(5792):1402.CrossRefGoogle ScholarPubMed

18. See note 17, Owen et al. 2006.

19. See note 14, Naci, Owen 2013.

20. See note 7, Naci et al. 2018.

21. See note 8, Naci et al. 2017.

22. See note 10, Naci et al. 2016.

23. See note 12, Naci et al. 2014.

24. See note 10, Naci et al. 2016.

25. Sinai, L, Owen, AM, Naci, L. Mapping preserved real-world cognition in severely brain-injured patients. Frontiers in Bioscience (Landmark Ed) 2017;22:815–23.Google ScholarPubMed

26. See note 10, Naci et al. 2016.

27. Schiff, ND. Cognitive motor dissociation following severe brain injuries. JAMA Neurology 2015;72(12):1413–5.CrossRefGoogle ScholarPubMed

28. Locke, J. An Essay Concerning Human Understanding. London, UK: Edmund Parker; 1731 [1690].Google Scholar

29. Reid, T. Of Mr. Locke’s Account of Our Personal Identity. University Park, PA: Pennsylvania State University; 1785Google Scholar. Reprinted in: Perry, J, ed. Personal Identity. Oakland, CA: University of California Press; 1975: 113–118.

30. Seeley, WW, Sturm, VE. Self-representation and the frontal lobes. In: Miller, BL, Cummings, JL, eds. The Human Frontal Lobes: Functions and Disorders . 2nd ed. New York, NY: The Guilford Press; 2006: 317–34.Google Scholar

31. Damasio, AR. A neurobiology for consciousness. In: Metzinger, T, ed. Neural Correlates of Consciousness: Empirical and Conceptual Questions. Cambridge, MA: MIT Press; 2000: 111–20.Google Scholar

32. See note 30, Seeley, Sturm 2006.

33. Klein, SB, Nichols, S. Memory and the sense of personal identity. Mind 2012;121(483):677–702.Google Scholar

34. Atance, CM, O’Neill, DK. The emergence of episodic future thinking in humans. Learning and Motivation 2005;36(2):126–44.CrossRefGoogle Scholar

35. Klein, SB, German, TP, Cosmides, L, Gabriel, R. A theory of autobiographical memory: Necessary components and disorders resulting from their loss. Social Cognition 2004;22(5):460–90.Google Scholar

36. Tulving, E. Episodic memory and autonoesis: Uniquely human. In: Terrace, HS, Metcalfe, J, eds. The Missing Link in Cognition: Origins of Self-Reflective Consciousness. New York, NY: Oxford University Press; 2005: 3–56.CrossRefGoogle Scholar

37. McAdams, DP, McLean, KC. Narrative identity. Current Directions in Psychological Science 2013;22(3):233–8.Google Scholar

38. See note 13, Fernández-Espejo, Owen 2013.

39. Illman, NA, Crawford, S. Late-recovery from “permanent” vegetative state in the context of severe traumatic brain injury: A case report exploring objective and subjective aspects of recovery and rehabilitation. Neuropsychological Rehabilitation 2018;28(8):1360–74.CrossRefGoogle ScholarPubMed

40. Wilson, BA, Gracey, F. Cognitive recovery from ‘persistent vegetative state’: Psychological and personal perspectives. Brain Injury 2001;15(12):1083–92.CrossRefGoogle Scholar

41. Macniven, JA, Poz, R, Bainbridge, K, Gracey, F, Wilson, BA. Emotional adjustment following cognitive recovery from ‘persistent vegetative state’: Psychological and personal perspectives. Brain Injury 2003;17(6):525–33.CrossRefGoogle ScholarPubMed

42. Dhamapurkar, SK, Rose, A, Florschutz, G, Wilson, BA. The natural history of continuing improvement in an individual after a long period of impaired consciousness: The story of IJ. Brain Injury 2016;30(2):230–6.CrossRefGoogle Scholar

43. De Tanti, A, Saviola, D, Basagni, B, Cavatorta, S, Chiari, M, Casalino, S, et al. Recovery of consciousness after 7 years in vegetative state of non-traumatic origin: A single case study. Brain Injury 2016;30(8):1029–34.CrossRefGoogle ScholarPubMed

44. Giacino, JT, Ashwal, S, Childs, N, Cranford, R, Jennett, B, Katz, DI, et al. The minimally conscious state: Definition and diagnostic criteria. Neurology 2002;58(3):349–53.Google ScholarPubMed

45. Owen, A. When a Vegetative State Patient Returns to Tell the Tale [Internet]. New York, NY: Adrian Owen; 2019; available at https://www.psychologytoday.com/intl/blog/the-gray-zone/201902/when-vegetative-state-patient-returns-tell-the-tale (last accessed 11 Mar 2020).Google Scholar

46. Owen, A. Into the Gray Zone: A Neuroscientist Explores the Border Between Life and Death. New York, NY: Simon and Schuster; 2017.Google Scholar

47. Teasdale, G, Jennett, B. Assessment of coma and impaired consciousness: A practical scale. The Lancet 1974;304(7872):81–4.CrossRefGoogle Scholar

48. Giacino, JT, Kalmar, K, Whyte, J. The JFK Coma Recovery Scale-revised: Measurement characteristics and diagnostic utility. Archives of Physical Medicine and Rehabilitation 2004;85(12):2020–9.CrossRefGoogle ScholarPubMed

49. See note 8, Naci et al. 2017.

50. Whoqol Group. The World Health Organization quality of life assessment (WHOQOL): Position paper from the World Health Organization. Social Science & Medicine 1995;41(10):1403–9.CrossRefGoogle Scholar

51. See note 14, Naci, Owen 2013.

52. See note 13, Fernandez-Espejo, Owen 2013.

53. Monti, MM, Vanhaudenhuyse, A, Coleman, MR, Boly, M, Pickard, JD, Tshibanda, L, et al. Willful modulation of brain activity in disorders of consciousness. New England Journal of Medicine 2010;362(7):579–89.Google ScholarPubMed

54. Albrecht, GL, Devlieger, PJ. The disability paradox: High quality of life against all odds. Social Science & Medicine 1999;48(8):977–88.CrossRefGoogle ScholarPubMed

55. Lulé, D, Zickler, C, Häcker, S, Bruno, MA, Demertzi, A, Pellas, F, et al. Life can be worth living in locked-in syndrome. Progress in Brain Research 2009;177:339–51.CrossRefGoogle ScholarPubMed

56. Snoeys, L, Vanhoof, G, Manders, E. Living with locked-in syndrome: An explorative study on health care situation, communication and quality of life. Disability and Rehabilitation 2013;35(9):713–18.CrossRefGoogle Scholar

57. Doble, JE, Haig, AJ, Anderson, C, Katz, R. 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 2003;18(5):435–44.CrossRefGoogle Scholar

58. Demertzi, A, Jox, RJ, Racine, E, Laureys, S. A European survey on attitudes towards pain and end-of-life issues in locked-in syndrome. Brain Injury 2014;28(9):1209–15.CrossRefGoogle ScholarPubMed

59. Tung, J, Speechley, KN, Gofton, T, Gonzalez-Lara, LE, Graham, M, Naci, L, et al. Towards the assessment of quality of life in patients with disorders of consciousness. Quality of Life Research 2020;29:1217–27.Google ScholarPubMed

60. See note 44, Owen 2019.

61. See note 45, Owen 2017.

62. Graham, M. Can they feel? The capacity for pain and pleasure in patients with cognitive motor dissociation. Neuroethics 2019;12:153–69.CrossRefGoogle ScholarPubMed

63. See note 62, Graham 2019.

64. Kahane, G, Savulescu, J. Brain damage and the moral significance of consciousness. Journal of Medicine and Philosophy 2009;34(1):6–26.Google Scholar

65. Hawkins, J. What’s good for them? Best interests and severe disorders of consciousness. In: Sinnot-Armstrong, W, ed. Finding Consciousness: The Neuroscience, Ethics, and Law of Severe Brain Injury. Oxford, UK: Oxford University Press; 2016: 181–206.Google Scholar

66. Graham, M. A fate worse than death? The well-being of patients diagnosed as vegetative with covert awareness. Ethical Theory and Moral Practice 2017;20(5):1005–20.Google Scholar

67. Guger, C, Sorger, B, Noirhomme, Q, Naci, L, Monti, MM, Real, R, et al. Brain-computer interfaces for assessment and communication in disorders of consciousness. In: Naik, GR, ed. Emerging Theory and Practice in Neuroprosthetics. Hershey, PA: IGI Global; 2014: 181–214.CrossRefGoogle Scholar

68. Naci, L, Monti, MM, Cruse, D, Kübler, A, Sorger, B, Goebel, R, et al. Brain–computer interfaces for communication with nonresponsive patients. Annals of Neurology 2012;72(3):312–23.CrossRefGoogle ScholarPubMed

69. Naci, L, Cusack, R, Jia, VZ, Owen, AM. The brain’s silent messenger: Using selective attention to decode human thought for brain-based communication. Journal of Neuroscience 2013;33(22):9385–93.CrossRefGoogle ScholarPubMed

70. See note 14, Naci, Owen 2013.

71. See note 13, Fernandez-Espejo, Owen 2013.

72. See note 52, Monti et al. 2010.

73. See note 65, Graham 2017.

74. Jox, RJ, Bernat, JL, Laureys, S, Racine, E. Disorders of consciousness: Responding to requests for novel diagnostic and therapeutic interventions. The Lancet Neurology 2012;11(8):732–8.CrossRefGoogle ScholarPubMed

75. Estraneo, A., Moretta, P, Loreto, V, Lanzillo, B, Santoro, L, Trojano, L. Late recovery after traumatic, anoxic, or hemorrhagic long-lasting vegetative state. Neurology 2010;75(3):239–45.CrossRefGoogle ScholarPubMed

76. Luauté, JMDP, Maucort-Boulch, DMDP, Tell, L, Quelard, F, Sarraf, T, Iwaz, J, et al. Long-term outcomes of chronic minimally conscious and vegetative states. Neurology 2010;75(3):246–52.CrossRefGoogle ScholarPubMed

77. See note 39, Illman, Crawford 2018.

78. See note 40, Wilson, Gracey 2001.

79. See note 42, Dhamaparkur et al. 2015.

80. See note 43, De Tanti et al. 2016.

81. Graham, M, Owen, AM, Çipi, K, Weijer, C, Naci, L. Minimizing the harm of accidental awareness under general anesthesia: New perspectives from patients misdiagnosed as being in a vegetative state. Anesthesia & Analgesia 2018;126(3):1073–6.CrossRefGoogle Scholar

82. Pandit, JJ, Cook, TM. Accidental awareness during general anaesthesia in the United Kingdom and Ireland. Journal of the Royal College of Physicians of Edinburgh 2014;44:289–90.Google Scholar

83. See note 81, Pandit, Cook 2014.

84. Osterman, JE, van der Kolk, BA. Awareness during anesthesia and posttraumatic stress disorder. General Hospital Psychiatry 1998;20(5):274–81.CrossRefGoogle ScholarPubMed

85. Richmond, TS, Thompson, HJ, Deatrick, JA, Kauder, DR. Journey towards recovery following physical trauma. Journal of Advanced Nursing 2000;32(6):1341–7.CrossRefGoogle ScholarPubMed

86. Manning, JC, Hemingway, P, Redsell, SA. Long‐term psychosocial impact reported by childhood critical illness survivors: A systematic review. Nursing in Critical Care 2014;19(3):145–56.CrossRefGoogle ScholarPubMed

87. Kondziella, D, Friberg, CK, Frokjaer, VG, Fabricius, M, Møller, K. Preserved consciousness in vegetative and minimal conscious states: Systematic review and meta-analysis. Journal of Neurology, Neurosurgery and Psychiatry 2016;87(5):485–92.CrossRefGoogle ScholarPubMed

88. See note 52, Monti et al. 2010.