Hostname: page-component-76fb5796d-45l2p Total loading time: 0 Render date: 2024-04-25T21:12:16.970Z Has data issue: false hasContentIssue false
  • English
  • Français

Disorders of Consciousness, Past, Present, and Future

Published online by Cambridge University Press:  13 August 2019

JOSEPH J. FINS
Get access Rights & Permissions [Opens in a new window]

Abstract:

This paper, presented as the 2019 Cambridge Quarterly Neuroethics Network Charcot Lecture, traces the nosology of disorders of consciousness in light of 2018 practice guidelines promulgated by the American Academy of Neurology, the American College of Rehabilitation Medicine and the National Institute on Disability, Independent Living and Rehabilitation Research. By exploring the ancient origins of Jennett and Plum’s persistent vegetative state and subsequent refinements in the classification of disorders of consciousness—epitomized by the minimally conscious state, cognitive motor dissociation, and the recently described chronic vegetative state—the author argues that there is a counter-narrative to the one linking these conditions to the right to die. Instead, there is a more nuanced schema distinguishing futility from utility, informed by technical advances now able to identify covert consciousness contemplated by Jennett and Plum. Their prescience foreshadows recent developments in the disorders of consciousness literature yielding a layered legacy with implications for society’s normative and legal obligations to these patients.

Keywords

persistent vegetative statepermanent vegetative statechronic vegetative statedisorders of consciousnesspractice guidelinedisorders of consciousnessneuroethicsdisability rightsKaren Ann QuinlanFred PlumBryan Jennett
Type
Article
Information
Cambridge Quarterly of Healthcare Ethics , Volume 28 , Special Issue 4: Clinical Neuroethics , October 2019 , pp. 603 - 615
Copyright
Copyright © Cambridge University Press 2019 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

Footnotes

Acknowledgements: Earlier versions of this talk were presented as a plenary session at the 13th World Congress on Brain Injury, International Brain Injury Association and as the Nicholas E. Davies Memorial Award Lecture at the 100th Annual Meeting, American College of Physicians. The author would like to acknowledge John and Eva Usdan for their generous support of his work.

References

Notes

* “A life that is saved, deserves to be lived.” Federación Epañola de Daño Cerebra. Spanish Federation of Brain Injury. Accessed 15 April 2015 at: 4-12-45-29.admin.2014-manifesto-dia-dano-cerebral-adquirido-fedace.pdf

1. Giacino, JT, Katz, DI, Schiff, ND, Whyte, J, Ashman, EJ, Ashwal, S, et al. Comprehensive systematic review update summary: Disorders of consciousness: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology; the American Congress of Rehabilitation Medicine; and the National Institute on Disability, Independent Living, and Rehabilitation Research. Neurology 2018;91(10):461–70.CrossRefGoogle ScholarPubMed Simultaneously published in Archives of Physical Medicine and Rehabilitation 2018;99(9):1710–9.

2. Giacino, JT, Katz, DI, Schiff, ND, Whyte, J, Ashman, EJ, Ashwal, S, et al. Practice guideline: Disorders of consciousness. Neurology 2018;91(10):450–60.CrossRefGoogle ScholarPubMed Simultaneously published in Archives of Physical Medicine and Rehabilitation 2018;99(9):1710–9.

3. Multi-Society Task Force on PVS. Medical aspects of the persistent vegetative state. (1). New England Journal of Medicine 1994;330(21):1499–508 and (2) New England Journal of Medicine 1994;330(22):1572–9.

4. Giacino, JT, Ashwal, S, Childs, N, Cranford, R, Jennett, B, Katz, DI, Kelly, JP, Rosenberg, JH, Whyte, J, Zafonte, RD, Zasler, ND. The minimally conscious state: Definition and diagnostic criteria. Neurology 2002;58(3):349–53.CrossRefGoogle ScholarPubMed

5. Fins, JJ and Bernat, JL. Ethical, palliative, and policy considerations in disorders of consciousness. Neurology 2018;91:471–5.CrossRefGoogle ScholarPubMed Simultaneously published in Archives of Physical Medicine and Rehabilitation 2018;99(9):1927–31.

6. Fins, JJ. Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness. New York: Cambridge University Press; 2015.CrossRefGoogle Scholar

7. Fins, JJ. Constructing an ethical stereotaxy for severe brain injury: Balancing risks, benefits and access. Nature Reviews Neuroscience 2003;4:323–7.CrossRefGoogle Scholar

8. Fins, JJ and Plum, F. Neurological diagnosis is more than a state of mind: Diagnostic clarity and impaired consciousness. Archives of Neurology 2004;61(9):1354–5.CrossRefGoogle ScholarPubMed

9. See note 3, Multi-Society Task Force, 1994.

10. See note 4, Giacino et al. 2002.

11. Aubinet, C, Panda, R, Larroque, SK, Cassol, H, Bahri, MA, Carrière, M, Wannez, S, Majerus, S, Laureys, S, Thibaut, A. Reappearance of command-following is associated with the recovery of language and internal-awareness networks: A longitudinal multiple-case report. Frontiers in Systems Neuroscience 2019;26(13):8.CrossRefGoogle Scholar

12. Jennett, B, Plum, F. Persistent vegetative state after brain damage. A syndrome in search of a name. Lancet 1972;1(7753):734–7.CrossRefGoogle Scholar

13. Laureys, S, Celesia, GG, Cohadon, F, Lavrijsen, J, León-Carrión, J, Sannita, WG, Sazbon, L, Schmutzhard, E, von Wild, KR, Zeman, A, Dolce, G; European Task Force on Disorders of Consciousness. Unresponsive wakefulness syndrome: A new name for the vegetative state or apallic syndrome. BMC Medicine 2010;8:68.CrossRefGoogle ScholarPubMed

14. Fins, JJ. Border zones of consciousness: Another immigration debate? American Journal of Bioethics-Neuroethics 2007;7(1):51–4.CrossRefGoogle ScholarPubMed

15. Fins JJ. Personalized medicine and disorders of consciousness: An alternate convergence of knowledge towards a new clinical nosology. Prepared for “Revolution in Personalized Medicine,” Pontificia Academia Scientiarum, The Vatican. Under review.

16. Plum, F, Schiff, N, Ribary, U, Llinas, R. Coordinated expression in chronically unconscious persons. Philosophical Transactions: Biological Sciences 1998;353:1929–33.Google ScholarPubMed

17. Adams, ZM and Fins, JJ. The historical origins of the vegetative state: Received wisdom and the utility of the text. Journal of the History of the Neurosciences 2017;26(2):140–53.CrossRefGoogle ScholarPubMed

18. See note 16, Plum et al. 1998.

19. Aristotle. On The Soul (De Anima). HettQ, trans., Greek text, translation, and notes. Cambridge, MA: Haravard University Press; 1957.

20. See 12, Jennett, Plum 1972.

21. In the matter of Karen Quinlan, Supreme Court of New Jersey. 70 N.J. 10, 355 A.2d 677 (1976).

22. Kinney, HC, Korein, J, Panigraphy, A, Dikkes, P, Goode, R. Neuropathological findings in the brain of Karen Ann Quinlan – The role of the thalamus in the Persistent Vegetative State. New England Journal of Medicine 1994;330:1469–75.CrossRefGoogle Scholar

23. Angell, MA. After Quinlan: The dilemma of the persistent vegetative state. New England Journal of Medicine 1994;330:1524–5.CrossRefGoogle ScholarPubMed

24. Cruzan v. Director, Missouri Department of Health, 497 U.S. 261 (1990).

25. Fins, JJ. Affirming the right to care, Preserving the right to die: Disorders of consciousness and neuroethics after Schiavo. Supportive & Palliative Care 2006;4(2):169–78.CrossRefGoogle ScholarPubMed

26. Fins, JJ. A Palliative Ethic of Care: Clinical Wisdom at Life’s End. Sudbury, MA: Jones and Bartlett; 2006.Google Scholar

27. See 25, Fins, 2006.

28. Wijdicks, EFM, Rabinstein, AA. The family conference: End-of-life guidelines at work for comatose patients. Neurology 2007;68:1092–4.CrossRefGoogle ScholarPubMed

29. Fins, JJ. Disorders of consciousness in clinical practice: Ethical, legal and policy considerations. In, Posner, JP, Saper, CB, Claussen, J, Schiff, ND. Plum and Posner’s Diagnosis of Stupor and Coma, 5th ed. New York: Oxford University Press; In Press.Google Scholar

30. See 6, Fins 2015, at 29–30.

31. Turgeon, AF, Lauzier, F, Simard, JF, Scales, DC, Burns, KE, Moore, L, et al. Mortality associated with withdrawal of life-sustaining therapy for patients with severe traumatic brain injury: A Canadian multicentre cohort study. Canadian Medical Association journal = Journal de l’Association Medicale Canadienne 2011;183:1581–8.CrossRefGoogle ScholarPubMed

32. Fins, JJ. Ethics of clinical decision making and communication with surrogates. In Plum and Posner’s Diagnosis of Stupor and Coma. 4th Edition. New York: Oxford University Press; 2007.Google Scholar

33. See 6, Fins 2015.

34. Plum F. Undated manuscript. New York Presbyterian Weill Cornell Medicine Archives. FP Archives, Box 2, undated ms, circa late 1970’s.

35. Altman LK. Coma study seeks ways to predict recoveries. The New York Times. April 14, 1977; available at https://www.nytimes.com/1977/04/14/archives/coma-study-seeks-ways-to-predict-recoveries.html (last accessed 2 Jan 2019).

36. See note 35, Altman 1977.

37. Fins, JJ. A once and future clinical neuroethics: A history of what was and what might be. Journal of Clinical Ethics 2019;30(1):27–34.Google Scholar

38. See note 3, Multi-Society Task Force 1994.

39. See note 6, Fins 2015, at 171.

40. Giacino, JT, Kalmar, K. The vegetative and minimally conscious states: A comparison of clinical and functional outcomes. Journal Head Trauma and Rehabilitation 1997;12(4):36–61.CrossRefGoogle Scholar

41. See note 40, Giacino et al. 1997.

42. See note 4, Giacino et al. 2002.

43. Schiff, ND, Rodriguez-Moreno, D, Kamal, D, Giacino, JT, Plum, F, Hirsch, J. fMRI reveals large-scale network activation in minimally conscious patients. Neurology 2005;64(3):514–23.CrossRefGoogle ScholarPubMed

44. Laureys, S, Faymonville, ME, Peigneux, P, Damas, P, Lambermont, B, Del Fiore, G, Degueldre, C, Aerts, J, Luxen, A, Franck, G, Lamy, M, Moonen, G, Maquet, P. Cortical processing of noxious somatosensory stimuli in the persistent vegetative state. Neuroimage 2002;17(2):732–41.CrossRefGoogle ScholarPubMed

45. Schnakers, C, Chatelle, C, Majerus, S, Gosseries, O, De Val, M, Laureys, S. Assessment and detection of pain in noncommunicative severely brain-injured patients. Expert Review of Neurotherapeutics 2010;10(11):1725–31.CrossRefGoogle ScholarPubMed

46. Fins, JJ, Pohl, BR. Neuro-palliative care and disorders of consciousness. In, Oxford Textbook of Palliative Medicine, 5th ed. Hanks, G, Cherny, NI, Christakis, NA, Fallon, M, Kassa, S, Portenoy, RK, eds. Oxford: Oxford University Press; 2015, at 285–91.Google Scholar

47. 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

48. See note 12, Jennett, Plum 1972.

49. Fins, JJ, Schiff, ND. Shades of gray: New Insights from the vegetative state. The Hastings Center Report 2006;36(6):8.CrossRefGoogle ScholarPubMed

50. Schiff, ND. Cognitive motor dissociation following severe brain injury. JAMA Neurology 2015;72(12):1413–5.CrossRefGoogle Scholar

51. Edlow, BL, Chatelle, C, Spencer, CA, Chu, CJ, Bodien, YG, O’Connor, KL, Hirschberg, RE, Hochberg, LR, Giacino, JT, Rosenthal, ES, Wu, O. Early detection of consciousness in patients with severe traumatic brain injury. Brain 2017;140(9):2399–414.CrossRefGoogle ScholarPubMed

52. Edlow, BL, Fins, JJ. Assessment of Covert Consciousness in the Intensive Care Unit: Clinical and Ethical Considerations. Journal Head Trauma and Rehabilitation 2018;33(6):424–34.CrossRefGoogle ScholarPubMed

53. See note 6, Fins 2015, at 67–8.

54. HU, Uluğ AM, Dyke, JP, Watts, R, Kobylarz, EJ, McCandliss, BD, Heier, LA, Beattie, BJ, Hamacher, KA, Vallabhajosula, S, Goldsmith, SJ, Ballon, D, Giacino, JT, Schiff, ND. Possible axonal regrowth in late recovery from the minimally conscious state. Journal of Clinical Investigation 2006;116(7):2005–6.Google Scholar

55. Thengone DJ, Voss HU, Fridman EA, Schiff ND. Local changes in network structure contribute to late communication recovery in severe brain injury. Science Translational Medicine 2016;8(368):368re5.

56. Fins, JJ, Schiff, ND. Differences that make a difference in disorders of consciousness. American Journal of Bioethics-Neuroethics 2017;8(3):131–4.Google Scholar

57. See note 6, Fins 2015.

58. Wright, MS, Fins, JJ. Rehabilitation, education, and the integration of individuals with severe brain injury into civil society: Towards an expanded rights agenda in response to new insights from translational neuroethics and neuroscience. Yale Journal of Health Policy, Law, and Ethics 2016;16(2):233–88.Google ScholarPubMed

59. Fins, JJ. We can rewrite the script for some brain injury patients. The Houston Chronicle. January 15, 2016:B9.Google Scholar

60. Schnakers, C, Vanhaudenhuyse, A, Giacino, J, Ventura, M, Boly, M, Majerus, S, Moonen, G, Laureys, S. Diagnostic accuracy of the vegetative and minimally conscious state: Clinical consensus versus standardized neurobehavioral assessment. BMC Neurology 2009;9:35.CrossRefGoogle ScholarPubMed

61. Dewey, J. Common Sense and scientific inquiry. In, Logic, the Theory of Inquiry. John Dewey, The Later Works, 1925–1953. Volume 12;1938. Boydston, JA, ed. Carbondale and Edwardsville: Southern Illinois University Press; 1991, at 83.Google Scholar

62. Schiff, ND. Recovery of consciousness after brain injury: A mesocircuit hypothesis. Trends in Neurosciences 2010;33(1):1–9.CrossRefGoogle ScholarPubMed

63. Schiff, ND, Giacino, JT, Kalmar, K, Victor, JD, Baker, K, Gerber, M, Fritz, B, Eisenberg, B, O’Connor, J, Kobylarz, EJ, Farris, S, Machado, A, McCagg, C, Plum, F, Fins, JJ, Rezai, AR. Behavioral improvements with thalamic stimulation after severe traumatic brain injury. Nature 2007;448(7153):600–3.CrossRefGoogle ScholarPubMed

64. Ragazzoni, A, Cincotta, M, Giovannelli, F, Cruse, D, Young, GB, Miniussi, C, Rossi, S. Clinical neurophysiology of prolonged disorders of consciousness: From diagnostic stimulation to therapeutic neuromodulation. Clinical Neurophysiology 2017;128(9):1629–46.CrossRefGoogle ScholarPubMed

65. Monti, MM, Schnakers, C, Korb, AS, Bystritsky, A, Vespa, PM. Non-Invasive Ultrasonic Thalamic Stimulation in Disorders of Consciousness after Severe Brain Injury: A First-in-Man Report. Brain Stimulation 2016;9(6):940–1.CrossRefGoogle ScholarPubMed

66. Giacino, JT, Whyte, J, Bagiella, E, Kalmar, K, Childs, N, Khademi, A, Eifert, B, Long, D, Katz, DI, Cho, S, Yablon, SA, Luther, M, Hammond, FM, Nordenbo, A, Novak, P, Mercer, W, Maurer-Karattup, P, Sherer, M. Placebo-controlled trial of amantadine for severe traumatic brain injury. New England Journal of Medicine 2012;366(9):819–26.CrossRefGoogle ScholarPubMed

67. Brefel-Courbon, C, Payoux, P, Ory, F, Sommet, A, Slaoui, T, Raboyeau, G, Lemesle, B, Puel, M, Montastruc, JL, Demonet, JF, Cardebat, D. Clinical and imaging evidence of zolpidem effect in hypoxic encephalopathy. Annals of Neurology 2007;62(1):102–5.CrossRefGoogle ScholarPubMed

68. Obergefell (135 S. Ct. 2584 [2015]).

69. See note 2, Giacino et al. 2018.

70. Fins, JJ, Wright, MS, Kraft, C, Rogers, A, Romani, MB, Goodwin, S, Ulrich, MR. Whither ihe “Improvement Standard”? Coverage for severe brain injury after Jimmo v. Sebelius. Journal of Law Medicine and Ethics 2016;44(1):182–93.CrossRefGoogle Scholar

71. See note 6, Fins 2015.

72. Fins, JJ. Brain injury and the civil right we don’t think about. The New York Times. August 24, 2017; available at https://www.nytimes.com/2017/08/24/opinion/minimally-conscious-brain-civil-rights.html?_r=0 (last accessed 15 April 2019).Google Scholar

73. Wright, MS, Varsava, N, Ramirez, J, Edwards, K, Guevremont, N, Ezer, T, Fins, JJ. Justice and severe brain injury: Legal remedies for a marginalized population. Florida State University Law Review 2018;45:313–82.Google Scholar

74. Fins, JJ, Wright, MS. Rights language and disorders of consciousness: A Call for advocacy. Brain Injury 2018;32(5):670–4.CrossRefGoogle Scholar

75. Americans with Disabilities Act, 42 U.S.C. 12101 (1990).

76. Olmstead (527 U.S. 581 [1999]).

77. UN General Assembly, Convention on the Rights of Persons with Disabilities, 13 December 2006.

78. See note 12, Jennett and Plum 1972.