Observations on the ethical and social aspects of disorders of consciousness

Canadian Journal of Neurological Sciences

Volumn 37, Issue 6, 2010, Pages 758-768

  Racine, Eric ^a,b   Rodrigue, Catherine ^a   Bernat, James L ^d   Riopelle, Richard ^b   Shemie, Sam D ^c  

^a UNIVERSITÉ DE MONTRÉAL   (Canada)

^b MCGILL UNIVERSITY   (Canada)

^c MONTREAL CHILDREN S HOSPITAL   (Canada)

^d DARTMOUTH HITCHCOCK MEDICAL CENTER   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ARTIFICIAL FEEDING; AWARENESS; CLINICAL RESEARCH; COMA; DIAGNOSTIC ACCURACY; ETHICS; HUMAN; HYDRATION; LONG TERM CARE; MINIMALLY CONSCIOUS STATE; NEUROIMAGING; NEUROSCIENCE; PATIENT AUTONOMY; PATIENT CARE; PERSISTENT VEGETATIVE STATE; PRIORITY JOURNAL; RELIGION; REVIEW; SOCIAL ASPECT;

EID: 79952948958     PISSN: 03171671     EISSN: None     Source Type: Journal    
DOI: 10.1017/S0317167100051416     Document Type: Review

References (97)

1. Koehler PJ, Wijdicks EF. Historical study of coma: looking back through medical and neurological texts. Brain. 2008;131(Pt 3): 877-89. (Pubitemid 351294718)
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 F. Plum 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. (Pubitemid 38333660)
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. (Pubitemid 39485860)
9. Cartlidge N. States related to or confused with coma. J Neurol Neurosurg Psychiatry. 2001;71 Suppl 1:i18-9. (Pubitemid 33754251)
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. (Pubitemid 30618178)
12. Lazar NM, Shemie SD, Webster GC, Dickens BM. Bioethics for clinicians: 24. Brain death. CMAJ. 2001;164(6):833-6. (Pubitemid 32511047)
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. (Pubitemid 44420068)
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. (Pubitemid 44150904)
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. (Pubitemid 44150903)
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. (Pubitemid 38738580)
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. (Pubitemid 351156808)
20. Giacino JT, Ashwal S, Childs N, et al. The minimally conscious state: definition and diagnostic criteria. Neurology. 2002;58(3): 349-53. (Pubitemid 34150906)
21. Stevens RD, Bhardwaj A. Approach to the comatose patient. Crit Care Med. 2006;34(1):31-41. (Pubitemid 43033316)
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. (Pubitemid 27387217)
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 (Pubitemid 26366438)
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. (Pubitemid 41568731)
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. (Pubitemid 47511705)
35. Owen AM, Coleman MR, Boly M, Davis MH, Laureys S, Pickard JD. Detecting awareness in the vegetative state. Science. 2006; 313(5792):1402. (Pubitemid 44360261)
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. (Pubitemid 40250684)
37. Laureys S, Boly M. What is it like to be vegetative or minimally conscious? Curr Opin Neurol. 2007;20(6):609-13. (Pubitemid 350084998)
38. Stepan C, Haidinger G, Binder H. Prevalence of persistent vegetative state/apallic syndrome in Vienna. Eur J Neurol. 2004; 11(7):461-6. (Pubitemid 39037032)
39. Childs NL, Mercer WN, Childs HW. Accuracy of diagnosis of persistent vegetative state. Neurology. 1993;43(8):1465-7. (Pubitemid 23230525)
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. (Pubitemid 26229881)
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. (Pubitemid 19101404)
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. (Pubitemid 19278332)
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. (Pubitemid 47415296)
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. (Pubitemid 28383150)
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. (Pubitemid 28452123)
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. (Pubitemid 43739634)
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. (Pubitemid 44484971)
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. (Pubitemid 47206940)
61. Machado C, Rodriguez R, Carballo M, Perez J, Korein J. Results of protonMRS studies in PVS andMCS 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. (Pubitemid 350174735)
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. (Pubitemid 38374913)
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. (Pubitemid 44033324)
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. (Pubitemid 41381571)
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. (Pubitemid 40326626)
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. (Pubitemid 47240911)
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 Medical Association. CMACode of ethics (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. (Pubitemid 27022834)
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. (Pubitemid 40592667)
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. (Pubitemid 41381577)
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. (Pubitemid 30142610)
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 decisionmaking capacity. Neurology. 2007;68(14):1097-100 (Pubitemid 46559842)
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. (Pubitemid 41692531)
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-jointstatement-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-congressfiamc-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. (Pubitemid 29038439)
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. (Pubitemid 32150737)
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. (Pubitemid 40732189)