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Journal of Neurology

, Volume 258, Issue 6, pp 1058–1065 | Cite as

Attitudes towards end-of-life issues in disorders of consciousness: a European survey

  • A. Demertzi
  • D. Ledoux
  • M.-A. Bruno
  • A. Vanhaudenhuyse
  • O. Gosseries
  • A. Soddu
  • C. Schnakers
  • G. Moonen
  • S. Laureys
Original Communication

Abstract

Previous European surveys showed the support of healthcare professionals for treatment withdrawal [i.e., artificial nutrition and hydration (ANH) in chronic vegetative state (VS) patients]. The recent definition of minimally conscious state (MCS), and possibly research advances (e.g., functional neuroimaging), may have lead to uncertainty regarding potential residual perception and may have influenced opinions of healthcare professionals. The aim of the study was to update the end-of-life attitudes towards VS and to determine the end-of-life attitudes towards MCS. A 16-item questionnaire related to consciousness, pain and end-of-life issues in chronic (i.e., >1 year) VS and MCS and locked-in syndrome was distributed among attendants of medical and scientific conferences around Europe (n = 59). During a lecture, the items were explained orally to the attendants who needed to provide written yes/no responses. Chi-square tests and logistic regression analyses identified differences and associations for age, European region, religiosity, profession, and gender. We here report data on items concerning end-of-life issues on chronic VS and MCS. Responses were collected from 2,475 participants. For chronic VS (>1 year), 66% of healthcare professionals agreed to withdraw treatment and 82% wished not to be kept alive (P < 0.001). For chronic MCS (>1 year), less attendants agreed to withdraw treatment (28%, P < 0.001) and wished not to be kept alive (67%, P < 0.001). MCS was considered worse than VS for the patients in 54% and for their families in 42% of the sample. Respondents’ opinions were associated with geographic region and religiosity. Our data show that end-of-life opinions differ for VS as compared to MCS. The introduction of the diagnostic criteria for MCS has not substantially changed the opinions on end-of-life issues on permanent VS. Additionally, the existing legal ambiguity around MCS may have influenced the audience to draw a line between expressing preferences for self versus others, by implicitly recognizing that the latter could be a step on the slippery slope to legalize euthanasia. Given the observed individual variability, we stress the importance of advance directives and identification of proxies when discussing end-of-life issues in patients with disorders of consciousness.

Keywords

Ethics Vegetative state Minimally conscious state Euthanasia End-of-life Survey 

Notes

Acknowledgments

We would like to thank J. Savulescu, D.J. Wilkinson and N. Levy from the Wellcome Centre for Neuroethics, University of Oxford, UK, for the valuable contribution to the discussion on bioethical issues in treatment limitation from patients with disorders of consciousness. This research was funded by the Belgian National Funds for Scientific Research (FNRS), the European Commission (DISCOS, Marie-Curie Actions), the James McDonnell Foundation, the Mind Science Foundation, the French Speaking Community Concerted Research Action (ARC-06/11-340), the Fondation Médicale Reine Elisabeth and the University of Liège.

References

  1. 1.
    Posner J, Saper C, Schiff N, Plum F (eds) (2007) Plum and posner’s diagnosis of stupor and coma, 4th edn. Oxford University Press, New YorkGoogle Scholar
  2. 2.
    Jennett B, Plum F (1972) Persistent vegetative state after brain damage. A syndrome in search of a name. Lancet 1:734–737CrossRefPubMedGoogle Scholar
  3. 3.
    Giacino JT, Ashwal S, Childs N, Cranford R, Jennett B, Katz DI, Kelly JP, Rosenberg JH, Whyte J, Zafonte RD, Zasler ND (2002) The minimally conscious state: definition and diagnostic criteria. Neurology 58:349–353PubMedGoogle Scholar
  4. 4.
    American Congress of Rehabilitation Medicine (1995) Recommendations for use of uniform nomenclature pertinent to patients with severe alterations of consciousness. Arch Phys Med Rehabil 76:205–209CrossRefGoogle Scholar
  5. 5.
    Laureys S, Pellas F, Van Eeckhout P, Ghorbel S, Schnakers C, Perrin F, Berre J, Faymonville ME, Pantke KH, Damas F, Lamy M, Moonen G, Goldman S (2005) The locked-in syndrome : what is it like to be conscious but paralyzed and voiceless? Prog Brain Res 150:495–511CrossRefPubMedGoogle Scholar
  6. 6.
    Leon-Carrion J, van Eeckhout P, Dominguez-Morales Mdel R, Perez-Santamaria FJ (2002) The locked-in syndrome: a syndrome looking for a therapy. Brain Inj 16:571–582CrossRefPubMedGoogle Scholar
  7. 7.
    Jennett B (2002) Attitudes to the permanent vegetative state. In: Jennett B (ed) The vegetative state. Medical facts, ethical and legal dilemmas. Cambridge University Press, Cambridge, pp 97–125CrossRefGoogle Scholar
  8. 8.
    Demertzi A, Liew C, Ledoux D, Bruno MA, Sharpe M, Laureys S, Zeman A (2009) Dualism persists in the science of mind. Ann N Y Acad Sci 1157:1–9CrossRefPubMedGoogle Scholar
  9. 9.
    Demertzi A, Schnakers C, Ledoux D, Chatelle C, Bruno MA, Vanhaudenhuyse A, Boly M, Moonen G, Laureys S (2009) Different beliefs about pain perception in the vegetative and minimally conscious states: a European survey of medical and paramedical professionals. Prog Brain Res 177:329–338CrossRefPubMedGoogle Scholar
  10. 10.
    Sprung CL, Cohen SL, Sjokvist P, Baras M, Bulow HH, Hovilehto S, Ledoux D, Lippert A, Maia P, Phelan D, Schobersberger W, Wennberg E, Woodcock T (2003) End-of-life practices in European intensive care units: the ethicus study. JAMA 290:790–797CrossRefPubMedGoogle Scholar
  11. 11.
    Laureys S, Celesia GG, Cohadon F, Lavrijsen J, Leon-Carrrion J, Sannita WG, Sazbon L, Schmutzhard E, von Wild KR, Zeman A, Dolce G, Disorders Of Consciousness TE (2010) Unresponsive wakefulness syndrome: a new name for the vegetative state or apallic syndrome. BMC Med 8:68CrossRefPubMedGoogle Scholar
  12. 12.
    Schnakers C, Vanhaudenhuyse A, Giacino JT, Ventura M, Boly M, Majerus S, Moonen G, Laureys S (2009) Diagnostic accuracy of the vegetative and minimally conscious state: clinical consensus versus standardized neurobehavioral assessment. BMC neurol 9:35CrossRefPubMedGoogle Scholar
  13. 13.
    Owen AM, Coleman MR, Boly M, Davis MH, Laureys S, Pickard JD (2006) Detecting awareness in the vegetative state. Science (New York, NY) 313:1402CrossRefGoogle Scholar
  14. 14.
    Monti MM, Vanhaudenhuyse A, Coleman MR, Boly M, Pickard JD, Tshibanda L, Owen AM, Laureys S (2010) Willful modulation of brain activity in disorders of consciousness. N Engl J Med 362:579–589CrossRefPubMedGoogle Scholar
  15. 15.
    Di HB, Yu SM, Weng XC, Laureys S, Yu D, Li JQ, Qin PM, Zhu YH, Zhang SZ, Chen YZ (2007) Cerebral response to patient’s own name in the vegetative and minimally conscious states. Neurology 68:895–899CrossRefPubMedGoogle Scholar
  16. 16.
    Grubb A, Walsh P, Lambe N, Murrells T, Robinson S (1997) The moral and legal issues surrounding the treatment and care of patients in persistent vegetative state. Report to European Biomedical and Health Research ProgrammeGoogle Scholar
  17. 17.
    Burke WJ (2002) The minimally conscious state: definition and diagnostic criteria. Neurology 59(1473):1473–1474 author replyPubMedGoogle Scholar
  18. 18.
    Ledoux D, Bruno MA, Schnakers C, Giacino JT, Ventura M, Vanopdenbosch L, Peeters E, Lannoo E, Willemart T, Laureys S (2008) Outcome of vegetative and minimally conscious states: results from the belgian federal expertise network. In: Eighteenth meeting of the European Neurological Society, Nice, France, p 24 7–11 June 2008Google Scholar
  19. 19.
    The Multi-Society Task Force on PVS (1994) Medical aspects of the persistent vegetative state (2). N Engl J Med 330:1572–1579CrossRefGoogle Scholar
  20. 20.
    Voss HU, Uluc 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 (2006) Possible axonal regrowth in late recovery from the minimally conscious state. J Clin Invest 116:2005–2011CrossRefPubMedGoogle Scholar
  21. 21.
    Boly M, Faymonville ME, Schnakers C, Peigneux P, Lambermont B, Phillips C, Lancellotti P, Luxen A, Lamy M, Moonen G, Maquet P, Laureys S (2008) Perception of pain in the minimally conscious state with pet activation: an observational study. Lancet Neurol 7:1013–1020CrossRefPubMedGoogle Scholar
  22. 22.
    Gillick MR, Hesse K, Mazzapica N (1993) Medical technology at the end of life. What would physicians and nurses want for themselves? [published erratum appears in arch intern med 1994 feb 28;154(4):468]. Arch Intern Med 153:2542–2547CrossRefPubMedGoogle Scholar
  23. 23.
    Rosner F (1993) Why nutrition and hydration should not be withheld from patients. Chest 104:1892–1896CrossRefPubMedGoogle Scholar
  24. 24.
    Jennett B (2002) Ethical issues. In: Jennett B (ed) The vegetative state. Medical facts, ethical and legal dilemmas. Cambridge University Press, Cambridge, pp 97–125CrossRefGoogle Scholar
  25. 25.
    Boveroux P, Kirsch M, Boly M, Massion P, Sadzot B, Lambermont B, Lancellotti P, Piret S, Damas P, Damas F, Moonen G, Laureys S, Ledoux D (2008) Neurologic prognosis assessment in postanoxic encephalopathy. Reanimation 17:613–617CrossRefGoogle Scholar
  26. 26.
    Laureys S, Giacino JT, Schiff ND, Schabus M, Owen AM (2006) How should functional imaging of patients with disorders of consciousness contribute to their clinical rehabilitation needs? Curr Opin Neurol 19:520–527CrossRefPubMedGoogle Scholar
  27. 27.
    Jennett B (1976) Editorial: Resource allocation for the severely brain damaged. Arch Neurol 33:595–597PubMedGoogle Scholar
  28. 28.
    Brett AS (1991) Limitations of listing specific medical interventions in advance directives. JAMA 266:825–828CrossRefPubMedGoogle Scholar
  29. 29.
    Lee MA, Smith DM, Fenn DS, Ganzini L (1998) Do patients’ treatment decisions match advance statements of their preferences? J Clin Ethics 9:258–262PubMedGoogle Scholar
  30. 30.
    Gready RM, Ditto PH, Danks JH, Coppola KM, Lockhart LK, Smucker WD (2000) Actual and perceived stability of preferences for life-sustaining treatment. J Clin Ethics 11:334–346PubMedGoogle Scholar
  31. 31.
    Christakis NA, Asch DA (1995) Physician characteristics associated with decisions to withdraw life support. Am J Public Health 85:367–372CrossRefPubMedGoogle Scholar
  32. 32.
    Vincent JL (1999) Forgoing life support in western European intensive care units: the results of an ethical questionnaire. Crit Care Med 27:1626–1633CrossRefPubMedGoogle Scholar
  33. 33.
    Yaguchi A, Truog RD, Curtis JR, Luce JM, Levy MM, Melot C, Vincent JL (2005) International differences in end-of-life attitudes in the intensive care unit: results of a survey. Arch Intern Med 165:1970–1975CrossRefPubMedGoogle Scholar
  34. 34.
    Stern JM, Sazbon L, Becker E, Costeff H (1988) Severe behavioural disturbance in families of patients with prolonged coma. Brain Inj 2:259–262CrossRefPubMedGoogle Scholar
  35. 35.
    Chiambretto P, Rossi Ferrario S, Zotti AM (2001) Patients in a persistent vegetative state: caregiver attitudes and reactions. Acta Neurol Scand 104:364–368CrossRefPubMedGoogle Scholar
  36. 36.
    Jacobs HE, Muir CA, Cline JD (1986) Family reactions to persistent vegetative state. J Head Trauma Rehabil 1:55–62CrossRefGoogle Scholar
  37. 37.
    Grubb A, Walsh P, Lambe N, Murrells T, Robinson S (1996) Survey of british clinicians’ views on management of patients in persistent vegetative state. Lancet 348:35–40CrossRefPubMedGoogle Scholar
  38. 38.
    Kahane G, Savulescu J (2009) Brain damage and the moral significance of consciousness. J Med Philos 34:6–26PubMedGoogle Scholar
  39. 39.
    Wilkinson DJ, Kahane G, Horne M, Savulescu J (2009) Functional neuroimaging and withdrawal of life-sustaining treatment from vegetative patients. J Med Ethics 35:508–511CrossRefPubMedGoogle Scholar
  40. 40.
    Silveira MJ, Kim SY, Langa KM (2010) Advance directives and outcomes of surrogate decision making before death. N Engl J Med 362:1211–1218CrossRefPubMedGoogle Scholar
  41. 41.
    Bernat E (1999) The living will: does an advance refusal of treatment made with capacity always survive any supervening incapacity? Med Law Int 4:1–21PubMedGoogle Scholar
  42. 42.
    Pollard C, Kennedy P (2007) A longitudinal analysis of emotional impact, coping strategies and post-traumatic psychological growth following spinal cord injury: a 10-year review. Br J Health Psychol 12:347–362CrossRefPubMedGoogle Scholar
  43. 43.
    Lule D, Zickler C, Hacker S, Bruno MA, Demertzi A, Pellas F, Laureys S, Kubler A (2009) Life can be worth living in locked-in syndrome. Prog Brain Res 177:339–351CrossRefPubMedGoogle Scholar
  44. 44.
    Bernat JL (2002) The persistent vegetative state and related states. Ethical issues in neurology, 2nd edn. Butterworth Heinemann, Boston, pp 283–305Google Scholar
  45. 45.
    Royal College of Physicians (2003) The vegetative state: guidance on diagnosis and management. Clin Med 3:249–254Google Scholar
  46. 46.
    Shevell M (2004) Ethical issues in pediatric critical care neurology. Semin Pediatr Neurol 11:179–184CrossRefPubMedGoogle Scholar
  47. 47.
    Johnson LS (2010) The right to die in the minimally conscious state. J Med EthicsGoogle Scholar
  48. 48.
    Fins JJ (2006) Affirming the right to care, preserving the right to die: disorders of consciousness and neuroethics after schiavo. Palliat Support Care 4:169–178CrossRefPubMedGoogle Scholar
  49. 49.
    Dierickx K, Schotsmans P, Grubb A, Walsh P, Lambe N (1998) Belgian doctors’ attitudes on the management of patients in persistent vegetative state (pvs): ethical and regulatory aspects. Acta Neurochir 140:481–489Google Scholar
  50. 50.
    Payne K, Taylor RM, Stocking C, Sachs GA (1996) Physicians’ attitudes about the care of patients in the persistent vegetative state: a national survey. Ann Intern Med 125:104–110Google Scholar
  51. 51.
    Hodges MO, Tolle SW, Stocking C, Cassel CK (1994) Tube feeding. Internists’ attitudes regarding ethical obligations. Arch Intern Med 154:1013–1020Google Scholar
  52. 52.
    Brunetti LL, Carperos SD, Westlund RE (1991) Physicians’ attitudes towards living wills and cardiopulmonary resuscitation. J Gen Intern Med 6:323–329Google Scholar

Copyright information

© Springer-Verlag 2011

Authors and Affiliations

  • A. Demertzi
    • 1
  • D. Ledoux
    • 1
  • M.-A. Bruno
    • 1
  • A. Vanhaudenhuyse
    • 1
  • O. Gosseries
    • 1
  • A. Soddu
    • 1
  • C. Schnakers
    • 1
  • G. Moonen
    • 2
  • S. Laureys
    • 1
    • 2
  1. 1.Coma Science Group, Cyclotron Research CentreUniversity of LiègeLiègeBelgium
  2. 2.Department of NeurologyUniversity Hospital of LiègeLiègeBelgium

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