Skip to main content

We use cookies to distinguish you from other users and to provide you with a better experience on our websites. Close this message to accept cookies or find out how to manage your cookie settings.

Close cookie message
Cancel
×
×
Home
  • Home
Article
  • Cited by 12
  • Cited by
    Crossref Citations
    Crossref logo
    This article has been cited by the following publications. This list is generated based on data provided by CrossRef.
    Zhang, Ye Li, Ran Du, Jubao Huo, Su Hao, Jianhui and Song, Weiqun 2017. Coherence in P300 as a predictor for the recovery from disorders of consciousness. Neuroscience Letters, Vol. 653, Issue. , p. 332.
    Pahl, Jessica 2016. Kunst und Krisen des Wartens im Umgang mit Langzeiterkrankten. Sociologia Internationalis, Vol. 54, Issue. 1-2, p. 27.
    Willems, Michelle Sattin, Davide Vingerhoets, Ad and Leonardi, Matilde 2015. Longitudinal Changes in Functioning and Disability in Patients with Disorders of Consciousness: The Importance of Environmental Factors. International Journal of Environmental Research and Public Health, Vol. 12, Issue. 4, p. 3707.
    Shemie, Sam D. 2014. Life, death, and the bridges in-between. Annals of the New York Academy of Sciences, Vol. 1330, Issue. 1, p. 101.
    Farisco, Michele Alleva, Enrico Chiarotti, Flavia Macri, Simone and Petrini, Carlo 2014. Clinicians’ Attitudes toward Patients with Disorders of Consciousness: A Survey. Neuroethics, Vol. 7, Issue. 1, p. 93.
    Kuehlmeyer, Katja Palmour, Nicole Riopelle, Richard J Bernat, James L Jox, Ralf J and Racine, Eric 2014. Physicians’ attitudes toward medical and ethical challenges for patients in the vegetative state: comparing Canadian and German perspectives in a vignette survey. BMC Neurology, Vol. 14, Issue. 1,
    Rodrigue, Catherine Riopelle, Richard J. Bernat, James L. and Racine, Eric 2013. Perspectives and Experience of Healthcare Professionals on Diagnosis, Prognosis, and End-of-Life Decision Making in Patients with Disorders of Consciousness. Neuroethics, Vol. 6, Issue. 1, p. 25.
    Demertzi, A. Racine, E. Bruno, M-A. Ledoux, D. Gosseries, O. Vanhaudenhuyse, A. Thonnard, M. Soddu, A. Moonen, G. and Laureys, S. 2013. Pain Perception in Disorders of Consciousness: Neuroscience, Clinical Care, and Ethics in Dialogue. Neuroethics, Vol. 6, Issue. 1, p. 37.
    Kuehlmeyer, Katja Racine, Eric Palmour, Nicole Hoster, Eva Borasio, Gian Domenico and Jox, Ralf J. 2012. Diagnostic and ethical challenges in disorders of consciousness and locked-in syndrome: a survey of German neurologists. Journal of Neurology, Vol. 259, Issue. 10, p. 2076.
    Jox, Ralf J Bernat, James L Laureys, Steven and Racine, Eric 2012. Disorders of consciousness: responding to requests for novel diagnostic and therapeutic interventions. The Lancet Neurology, Vol. 11, Issue. 8, p. 732.
    Latronico, Nicola Manenti, Ottavia Baini, Luca Rasulo, Frank A. and Goodyear, Michael 2011. Quality of Reporting on the Vegetative State in Italian Newspapers. The Case of Eluana Englaro. PLoS ONE, Vol. 6, Issue. 4, p. e18706.
    Teitelbaum, Jeanne and Young, G. Bryan 2010. The New Era of Consciousness Science - Are We Ready?. The Canadian Journal of Neurological Sciences, Vol. 37, Issue. 06, p. 713.
    ×
  • Access

Observations on the Ethical and Social Aspects of Disorders of Consciousness

  • Eric Racine (a1) (a2) (a3), Catherine Rodrigue (a1), James L. Bernat (a4), Richard Riopelle (a2) and Sam D. Shemie (a5)...
Abstract

The care of chronically unconscious patients raises vexing medical, ethical, and social questions concerning diagnosis, prognosis, communication with family members, and decision making, including the withdrawal of life support. We provide updates on major controversies surrounding disorders of consciousness. Issues such as withdrawal of artificial nutrition and hydration – which had been considered “settled” by many in the medical, legal and ethical communities – have resurfaced under the pressure of social groups and religious authorities. Some assumptions about the level of awareness and the prognosis of vegetative state and minimal conscious patients are questioned by advances in clinical care because of insights produced by neuroscience research techniques, particularly functional neuroimaging. Both the clinical and neuroscience dimensions of disorders of consciousness raise complex issues such as resource allocation and high levels of diagnostic inaccuracies (at least, for the vegetative state). We conclude by highlighting areas needing further research and collaboration.

    •
      • Send article to Kindle

      To send this article to your Kindle, first ensure no-reply@cambridge.org is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about sending to your Kindle. Find out more about sending to your Kindle.

      Note you can select to send to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be sent to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

      Find out more about the Kindle Personal Document Service.

      Observations on the Ethical and Social Aspects of Disorders of Consciousness
      Available formats
      ×
      Send article to Dropbox

      To send this article to your Dropbox account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your <service> account. Find out more about sending content to Dropbox.

      Observations on the Ethical and Social Aspects of Disorders of Consciousness
      Available formats
      ×
      Send article to Google Drive

      To send this article to your Google Drive account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your <service> account. Find out more about sending content to Google Drive.

      Observations on the Ethical and Social Aspects of Disorders of Consciousness
      Available formats
      ×
Copyright
COPYRIGHT: © The Canadian Journal of Neurological 2010
Corresponding author
Neuroethics Research Unit, Institut de recherches cliniques de Montréal (IRCM), 110 avenue des Pins Ouest, Montréal, Québec, H2W lR7, Canada
References
Hide All
1. Koehler, PJ, Wijdicks, EF. Historical study of coma: looking back through medical and neurological texts. Brain. 2008; 131(Pt 3):877–89.
2. Moruzzi, G, Magoun, HW. Brain stem reticular formation and activation of the EEG. Electroencephalogr Clin Neurophysiol. 1949; 1(4):455–73.
3. Bernat, JL. Chronic disorders of consciousness. Lancet. 2006; 367 (9517):1181–92.
4. Posner, JB, Saper, CB, Schiff, ND, Plum, Plum F. and Posner’s diagnosis of stupor and coma. 4th ed. New York: Oxford University Press; 2007.
5. Bernat, JL. Ethical issues in neurology. 3rd ed. Philadephia: Lippincott Williams and Wilkins; 2008.
6. Shiel, A, Gelling, L, Wilson, B, Coleman, M, Pickard, JD. Difficulties in diagnosing the vegetative state. Br J Neurosurg. 2004; 18(1):5–7.
7. Bernat, JL. Chronic consciousness disorders. Annu Rev Med. 2009; 60:381–92.
8. Laureys, S, Owen, AM, Schiff, ND. Brain function in coma, vegetative state, and related disorders. Lancet Neurol. 2004; 3(9):537–46.
9. Cartlidge, N. States related to or confused with coma. J Neurol Neurosurg Psychiatry. 2001; 71 Suppl 1: i18–9.
10. Canadian Medical Association. Guidelines for the diagnosis of brain death. CMAJ. 1987; 136(2):200A-B.
11. Patel, YC, Ezzat, S, Chik, CL, et al. Guidelines for the diagnosis and treatment of acromegaly: a Canadian perspective. Clin Invest Med. 2000; 23(3):172–87.
12. Lazar, NM, Shemie, SD, Webster, GC, Dickens, BM. Bioethics for clinicians: 24. Brain death. CMAJ. 2001; 164(6):833–6.
13. Shemie, SD, Doig, C, Dickens, B, et al. Severe brain injury to neurological determination of death: Canadian forum recommendations. CMAJ. 2006; 174(6):S1–13.
14. Barrington Research Group Inc. for the Summative Evaluation Steering of the Committee: Canadian Council for Donation and Transplantation. Canadian Council for Donation and Transplantation (CCDT) summative evaluation final report. Calgary: Canadian Council for Donation and Transplantation; 2006.
15. Rocker, GM, Cook, DJ, Shemie, SD. Practice variation in end of life care in the ICU: implications for patients with severe brain injury. Can J Anaesth. 2006; 53(8):814–9.
16. Hornby, K, Shemie, SD, Teitelbaum, J, Doig, C. Variability in hospital-based brain death guidelines in Canada. Can J Anaesth. 2006; 53(6):613–9.
17. Doig, CJ, Young, K, Teitelbaum, J, Shemie, SD. Brief survey: determining brain death in Canadian intensive care units. Can J Anaesth. 2006; 53(6):609–12.
18. Powner, DJ, Hernandez, M, Rives, TE. Variability among hospital policies for determining brain death in adults. Crit Care Med. 2004; 32(6):1284–8.
19. Greer, DM, Varelas, PN, Haque, S, Wijdicks, EF. Variability of brain death determination guidelines in leading US neurologic institutions. Neurology. 2008; 70(4):284–9.
20. Giacino, JT, Ashwal, S, Childs, N, et al. The minimally conscious state: definition and diagnostic criteria. Neurology. 2002;58(3):349–53.
21. Stevens, RD, Bhardwaj, A. Approach to the comatose patient. Crit Care Med. 2006; 34(1):31–41.
22. The Multi-Society Task Force on PVS. Medical aspects of the persistent vegetative state (1). N Engl J Med. 1994;330(21):1499–508.
23. Bates, D. The prognosis of medical coma. J Neurol Neurosurg Psychiatry 2001;71 Suppl 1:3.
24. Jennett, B, Plum, F. Persistent vegetative state after brain damage. A syndrome in search of a name. Lancet. 1972;1(7753):734–7.
25. Zeman, A. Persistent vegetative state. Lancet. 1997;350(9080):795–9.
26. Jennett, B. The vegetative state: medical facts, ethical and legal dilemmas. Cambridge: Cambridge University Press; 2002.
27. American Congress of Rehabilitation Medicine. Recommendations for use of uniform nomenclature pertinent to patients with severe alterations in consciousness. Arch Phys Med Rehabil. 1995;76(2):205–9.
28. The Quality Standards Subcommittee of the American Academy of Neurology. Practice parameters: assessment and management of patients in the persistent vegetative state (summary statement). Neurology. 1995;45(5):1015–8.
29. Andrews, K. International Working Party on the management of the vegetative state: summary report. Brain Inj. 1996;10(11):797–806.
30. Royal College of Physicians. The vegetative state: guidance on diagnosis and management. London: Royal College of Physicians; 2003.
31. National Health and Medical Research Council. Post-coma unresponsiveness and minimally responsive state: a guide for families and carers of people with profound brain damage. Canberra: Government of Australia; 2008. p. 31.
32. Laureys, S. Science and society: death, unconsciousness and the brain. Nat Rev Neurosci. 2005;6(11):899–909.
33. Fins, JJ, Illes, J, Bernat, JL, Hirsch, J, Laureys, S, Murphy, E. Neuroimaging and disorders of consciousness: envisioning an ethical research agenda. Am J Bioeth. 2008;8(9):3–12.
34. Coleman, MR, Rodd, JM, Davis, MH, et al. Do vegetative patients retain aspects of language comprehension? Evidence from fMRI. Brain. 2007;130(Pt 10):2494–507.
35. Owen, AM, Coleman, MR, Boly, M, Davis, MH, Laureys, S, Pickard, JD. Detecting awareness in the vegetative state. Science. 2006;313(5792):1402.
36. Giacino, J, Whyte, J. The vegetative and minimally conscious states: current knowledge and remaining questions. J Head Trauma Rehabil. 2005;20(1):30–50.
37. Laureys, S, Boly, M. What is it like to be vegetative or minimally conscious? Curr Opin Neurol. 2007;20(6):609–13.
38. Stepan, C, Haidinger, G, Binder, H. Prevalence of persistent vegetative state/apallic syndrome in Vienna. Eur J Neurol. 2004;11(7):461–6.
39. Childs, NL, Mercer, WN, Childs, HW. Accuracy of diagnosis of persistent vegetative state. Neurology. 1993;43(8):1465–7.
40. 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.
41. Schnakers, C, Vanhaudenhuyse, A, Giacino, J, et al. Diagnostic accuracy of the vegetative and minimally conscious state: clinical consensus versus standardized neurobehavioral assessment. BMC Neurol. 2009;9:35.
42. Gill-Thwaites, H. Lotteries, loopholes and luck: misdiagnosis in the vegetative state patient. Brain Inj. 2006;20(13–14):1321–8.
43. Youngner, SJ, Landefeld, CS, Coulton, CJ, Juknialis, BW, Leary, M. Brain death and organ retrieval. A cross-sectional survey of knowledge and concepts among health professionals. JAMA. 1989;261(15):2205–10.
44. Tomlinson, T. Misunderstanding death on a respirator. Bioethics. 1990;4(3):253–64.
45. Young, B, Blume, W, Lynch, A. Brain death and the persistent vegetative state: similarities and contrasts. Can J Neurol Sci. 1989;16(4):388–93.
46. Montagnino, BA, Ethier, AM. The experiences of pediatric nurses caring for children in a persistent vegetative state. Pediatr Crit Care Med. 2007;8(5):440–6.
47. Bell, TN. Nurses’ attitudes in caring for the comatose head-injured patient. J Neurosci Nurs. 1986;18(5):279–89.
48. Kalmar, K, Giacino, JT. The JFK coma recovery scale-revised. Neuropsychol Rehabil. 2005;15(3–4):454–60.
49. Crossman, J, Bankes, M, Bhan, A, Crockard, HA. The Glasgow coma score: reliable evidence? Injury. 1998;29(6):435–7.
50. Buechler, CM, Blostein, PA, Koestner, A, Hurt, K, Schaars, M, McKernan, J. Variation among trauma centers’ calculation of Glasgow coma scale score: results of a national survey. J Trauma. 1998;45(3):429–32.
51. Shanteau, J, Linin, K. Subjective meaning of terms used in organ donation: analysis of word associations. In: Shanteau, J, Harris, R, editors. Organ donation and transplantation: psychological and behavioral factors. Washington: American Psychological Association; 1990. p. 37–49.
52. Siminoff, LA, Burant, C, Youngner, SJ. Death and organ procurement: public beliefs and attitudes. Kennedy Inst Ethics J. 2004;14(3):217–34.
53. Wijdicks, EF, Wijdicks, CA. The portrayal of coma in contemporary motion pictures. Neurology. 2006;66(9):1300–3.
54. Wijdicks, EF, Wijdicks, MF. Coverage of coma in headlines of US newspapers from 2001 through 2005. Mayo Clin Proc. 2006;81 (10):1332–6.
55. Racine, E, Amaram, R, Seidler, M, Karczewska, M, Illes, J. Media coverage of the persistent vegetative state and end-of-life decision-making. Neurology. 2008;71(13):1027–32.
56. Macdonald, ME, Liben, S, Carnevale, FA, Cohen, SR. Signs of life and signs of death: brain death and other mixed messages at the end of life. J Child Health Care. 2008;12(2):92–105.
57. Gofton, TE, Chouinard, PA, Young, GB, et al. Functional MRI study of the primary somatosensory cortex in comatose survivors of cardiac arrest. Exp Neurol. 2009;217(2):320–7.
58. Monti, MM, Vanhaudenhuyse, A, Coleman, MR, et al. Willful modulation of brain activity in disorders of consciousness. N Engl J Med. 362(7):579–89.
59. Racine, E, Bell, E. Clinical and public translation of neuroimaging research in disorders of consciousness challenges current diagnostic and public understanding paradigms. Am J Bioeth. 2008;8(9):13–5; discussion W1–3.
60. Schiff, ND, Giacino, JT, Kalmar, K, et al. Behavioural improvements with thalamic stimulation after severe traumatic brain injury. Nature. 2007;448(7153):600–3.
61. Machado, C, Rodriguez, R, Carballo, M, Perez, J, Korein, J. Results of proton MRS studies in PVS and MCS patients. Can J Neurol Sci. 2009;36(3):365–9.
62. Tshibanda, L, Vanhaudenhuyse, A, Galanaud, D, Boly, M, Laureys, S, Puybasset, L. Magnetic resonance spectroscopy and diffusion tensor imaging in coma survivors: promises and pitfalls. Prog Brain Res. 2009;177:215–29.
63. Yuan, W, Holland, SK, Schmithorst, VJ, et al. Diffusion tensor MR imaging reveals persistent white matter alteration after traumatic brain injury experienced during early childhood. AJNR Am J Neuroradiol. 2007;28(10):1919–25.
64. Huisman, TA, Schwamm, LH, Schaefer, PW, et al. Diffusion tensor imaging as potential biomarker of white matter injury in diffuse axonal injury. AJNR Am J Neuroradiol. 2004;25(3):370–6.
65. Voss, HU, Uluc, AM, Dyke, JP, et al. Possible axonal regrowth in late recovery from the minimally conscious state. J Clin Invest. 2006;116(7):2005–11.
66. Lombardi, F, Taricco, M, De Tanti, A, Telaro, E, Liberati, A. Sensory stimulation of brain-injured individuals in coma or vegetative state: results of a Cochrane systematic review. Clin Rehabil. 2002;16(5):464–72.
67. Schiff, ND. Modeling the minimally conscious state: measurements of brain function and therapeutic possibilities. Prog Brain Res. 2005;150:473–93.
68. Whyte, J, Katz, D, Long, D, et al. Predictors of outcome in prolonged posttraumatic disorders of consciousness and assessment of medication effects: a multicenter study. Arch Phys Med Rehabil. 2005;86(3):453–62.
69. Brefel-Courbon, C, Payoux, P, Ory, F, et al. Clinical and imaging evidence of zolpidem effect in hypoxic encephalopathy. Ann Neurol. 2007;62(1):102–5.
70. Canadian Medical Association. Advance directives for resuscitation and other life-saving or sustaining measures. CMAJ. 1992;146(6):1072A–B.
71. Roy, DJ, Williams, JR, Dickens, BM. Bioethics in Canada. Scarborough, ON: Prentice Hall Canada; 1994.
72. Canadian MedicalAssociation. CMACode ofethics (Update 2004). 2004 [cited 2010 May 13]. Available from: http://policybase.cma.ca/PolicyPDF/PD04-06.pdf.
73. Rocker, G, Dunbar, S. Withholding or withdrawal of life support: the Canadian Critical Care Society position paper. J Palliat Care. 2000;16 Suppl:S53–62.
74. Singer, PA, Robertson, G, Roy, DJ. Bioethics for clinicians: 6. Advance care planning. CMAJ. 1996;155(12):1689–92.
75. Godlovitch, G, Mitchell, I, Doig, CJ. Discontinuing life support in comatose patients: an example from Canadian case law. CMAJ. 2005;172(9):1172–3.
76. Thompson, T, Barbour, R, Scwartz, L. Adherence to advance directives in critical care decision making: a vignette study. Br Med J. 2003;327:1–7.
77. Racine, E, Dion, MJ, Wijman, CA, Illes, J, Lansberg, MG. Profiles of neurological outcome prediction among intensivists. Neurocrit Care. 2009;11(3):345–52.
78. Boards of directors of the Canadian Healthcare Association, Canadian Medical Association, Canadian Nurses Association, Catholic Health Association of Canada. Join statement on preventing and resolving ethical conflicts involving health care providers and persons receiving care. 1999 [cited 2010 May 13]. Available from: http://www.cna-nurses.ca/CNA/documents/pdf/publications/prevent_resolv_ethical_conflict_e.pdf.
79. Eisenberg, JB. Schiavo on the cutting edge: functional brain imaging and its impact on surrogate end-of-life decision-making. Neuroethics. 2008;1(2):75–83.
80. Beauchamp, T, Childress, J. Principles of biomedical ethics. 5th ed. Oxford: Oxford University Press; 2001.
81. Fins, JJ. Clinical pragmatism and the care of brain damaged patients : toward a palliative neuroethics for disorders of consciousness. Prog Brain Res. 2005;150:565–82.
82. Miller, FG, Fins, JJ. Protecting human subjects in brain research: a pragmatic perspective. In: Illes, J, editor. Neuroethics: defining the issues in theory, practice, and policy. Oxford: Oxford University Press; 2006. p. 123“40.
83. Lennard-Jones, JE. Ethical and legal aspects of clinical hydration and nutritional support. BJU Int. 2000;85(4):398–403.
84. Bacon, D, Williams, MA, Gordon, J. Position statement on laws and regulations concerning life-sustaining treatment, including artificial nutrition and hydration, for patients lacking decision-making capacity. Neurology. 2007;68(14):1097–100
85. American Academy of Neurology. Position of the American Academy of Neurology on certain aspects of the care and management of the persistent vegetative state patient. Neurology. 1989;39(1):125–6.
86. Pence, GE. Comas: Karen Quinlan and Nancy Cruzan. Classic cases on medical ethics. Boston: McGraw-Hill; 2004. p. 29–57.
87. Perry, JE, Churchill, LR, Kirshner, HS. The Terri Schiavo case: legal, ethical, and medical perspectives. Ann Intern Med. 2005;143(10):744–8.
88. Striano, P, Bifulco, F, Servillo, G. The saga of Eluana Englaro: another tragedy feeding the media. Intensive Care Med. 2009;35(6):1129–31.
89. Pontifical Academy for Life and the World Medical Association of Catholic Medical Associations. Joint statement on the vegetative state. International Congress on “life sustaining treatments and vegetative state: Scientific advances and ethical dilemmas”; 2004 March 10–17; Rome; 2004 [cited 2010 May 13]. Available from: http://www.vatican.va/roman_curia/pontifical_academies/acdlife/documents/rc_pont-acd_life_doc_20040320_joint-statement-veget-state_en.html.
90. John, Paul II. Address of John Paul II to the participants in the International Congress on “life-sustaining treatments and vegetative state: Scientific advances and ethical dilemmas”. Vatican; 2004 [cited 2010 May 13]. Available from: http://www.vatican.va/holy_father/john_paul_ii/speeches/2004/march/documents/hf_jp-ii_spe_20040320_congress-fiamc_en.html.
91. Sim, J. Ethical issues in the management of persistent vegetative state. Physiother Res Int. 1997;2(2):7–11.
92. Phipps, E, Whyte, J. Medical decision-making with persons who are minimally conscious: a commentary. Am J Phys Med Rehabil. 1999;78(1):77–82.
93. Racine, E, Shevell, MI. Ethics in neonatal neurology: when is enough, enough? Pediatr Neurol. 2009;40(3):147–55.
94. The Multi-Society Task Force on PVS. Medical aspects of the persistent vegetative state (2). N Engl J Med. 1994;330(22): 1572–9.
95. Wade, DT. Ethical issues in diagnosis and management of patients in the permanent vegetative state. BMJ. 2001;322(7282):352–4.
96. Jonsen, AR, Siegler, M, Winslade, WT. Clinical ethics: a practical approach to ethical decision in clinical medicine. 4th ed. New York: McGraw Hill; 1998.
97. Fins, JJ. Rethinking disorders of consciousness: new research and its implications. Hastings Cent Rep. 2005;35(2):22–4.
Recommend this journal

Email your librarian or administrator to recommend adding this journal to your organisation's collection.

Canadian Journal of Neurological Sciences
  • ISSN: 0317-1671
  • EISSN: 2057-0155
  • URL: /core/journals/canadian-journal-of-neurological-sciences
Please enter your name
Please enter a valid email address
Who would you like to send this to? *

CAPTCHA *

Skip to the audio challenge
×

Metrics

Full text views

Total number of HTML views: 0
Total number of PDF views: 0 *
Loading metrics...

Abstract views

Total abstract views: 0 *
Loading metrics...

* Views captured on Cambridge Core between <date>. This data will be updated every 24 hours.

Usage data cannot currently be displayed

Cancel
Confirm
×