Skip to main content
SpringerLink
Log in

The Ethics in the Management of Patients with Disorders of Consciousness

  • Chapter
  • First Online:
Coma and Disorders of Consciousness

Abstract

Ethical reflection can play an important role in optimizing the management of patients with Disorders of Consciousness, for instance, revealing both good and bad practices. In fact, several issues arise, both from research and from clinics, and they deserve specific attention. It is urgent to move beyond a defensive type of ethics focused on safe-guarding from potential risks toward an ethics that is also pro-active and to think about a methodology and a model for translating ethical thinking into the actual clinical treatment of affected patients. In this chapter, I first propose the distinction between fundamental and practical ethical issues as a methodology for the ethics in the management of patients with Disorders of Consciousness, then I provide relevant illustrations of both kinds of ethical issues, and finally I describe the distributed responsibility model for the clinical operationalization of ethics.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 129.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Hardcover Book
USD 169.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  1. Fins J. Rights come to mind : brain injury, ethics, and the struggle for consciousness. New York: Cambridge University Press; 2015.

    Book  Google Scholar 

  2. Johnson LSM. The ethics of uncertainty : entangled ethical and epistemic risks in disorders of consciousness. New York, NY: Oxford University Press; 2021.

    Book  Google Scholar 

  3. Michel M, Beck D, Block N, Blumenfeld H, Brown R, Carmel D, et al. Opportunities and challenges for a maturing science of consciousness. Nat Hum Behav. 2019;3(2):104–7. https://doi.org/10.1038/s41562-019-0531-8.

    Article  PubMed  PubMed Central  Google Scholar 

  4. Overgaard M. The status and future of consciousness research. Front Psychol. 2017;8:1719.

    Article  PubMed  PubMed Central  Google Scholar 

  5. Young MJ, Bodien YG, Giacino JT, Fins JJ, Truog RD, Hochberg LR, et al. The neuroethics of disorders of consciousness: a brief history of evolving ideas. Brain. 2021;144(11):3291–310. https://doi.org/10.1093/brain/awab290.

    Article  PubMed  PubMed Central  Google Scholar 

  6. Young MJ, Edlow BL. The quest for covert consciousness: bringing neuroethics to the bedside. Neurology. 2021;96(19):893–6. https://doi.org/10.1212/WNL.0000000000011734.

    Article  PubMed  PubMed Central  Google Scholar 

  7. Farisco M, Salles A. American and European guidelines on disorders of consciousness: ethical challenges of implementation. J Head Trauma Rehabil. 2022;37(4):258–62. https://doi.org/10.1097/HTR.0000000000000776.

    Article  PubMed  Google Scholar 

  8. Marcus S, Charles A. Dana Foundation. Neuroethics: mapping the field: conference proceedings, May 13–14, 2002, San Francisco, California. New York: Dana Press; 2002.

    Google Scholar 

  9. Roskies A. Neuroethics for the new millennium. Neuron. 2002;35(1):21–3.

    Article  CAS  PubMed  Google Scholar 

  10. Evers K. Towards a philosophy for neuroethics. An informed materialist view of the brain might help to develop theoretical frameworks for applied neuroethics. EMBO Rep. 2007;8(Suppl. 1):S48–51. https://doi.org/10.1038/sj.embor.7401014.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  11. Neuroetique EK. Quand la matière s’éveille. Paris: Odile Jacob; 2009.

    Google Scholar 

  12. Farisco M, Salles A, Evers K. Neuroethics: a conceptual approach. Camb Q Healthc Ethics. 2018;27(4):717–27. https://doi.org/10.1017/S0963180118000208.

    Article  PubMed  Google Scholar 

  13. Pennartz C, Farisco M, Evers K. Indicators and criteria of consciousness in animals and intelligent machines: an inside-out approach. Front Syst Neurosci. 2019;13:25. https://doi.org/10.3389/fnsys.2019.00025.

    Article  PubMed  PubMed Central  Google Scholar 

  14. Farisco M, Pennartz C, Annen J, Cecconi B, Evers K. Indicators and criteria of consciousness: ethical implications for the care of behaviourally unresponsive patients. BMC Med Ethics. 2022;23(1):30. https://doi.org/10.1186/s12910-022-00770-3.

    Article  PubMed  PubMed Central  Google Scholar 

  15. 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 Neurol. 2009;9:35. https://doi.org/10.1186/1471-2377-9-35.

    Article  PubMed  PubMed Central  Google Scholar 

  16. Farisco M, Evers K. The ethical relevance of the unconscious. Philos Ethics Humanit Med. 2017;12(1):11. https://doi.org/10.1186/s13010-017-0053-9.

    Article  PubMed  PubMed Central  Google Scholar 

  17. Hassin RR, Uleman JS, Bargh JA. The new unconscious. Paperback ed. Oxford series in social cognition and social neuroscience. Oxford; New York: Oxford University Press; 2007.

    Google Scholar 

  18. Owen AM. Disorders of consciousness: diagnostic accuracy of brain imaging in the vegetative state. Nat Rev Neurol. 2014;10(7):370–1. https://doi.org/10.1038/nrneurol.2014.102.

    Article  PubMed  Google Scholar 

  19. Naci L, Sinai L, Owen AM. Detecting and interpreting conscious experiences in behaviorally non-responsive patients. NeuroImage. 2017;145(Pt B):304–13. https://doi.org/10.1016/j.neuroimage.2015.11.059.

    Article  PubMed  Google Scholar 

  20. Thibaut A, Panda R, Annen J, Sanz LRD, Naccache L, Martial C, et al. Preservation of brain activity in unresponsive patients identifies MCS star. Ann Neurol. 2021;90(1):89–100. https://doi.org/10.1002/ana.26095.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  21. Owen AM, Coleman MR, Boly M, Davis MH, Laureys S, Pickard JD. Detecting awareness in the vegetative state. Science. 2006;313(5792):1402. https://doi.org/10.1126/science.1130197.

    Article  CAS  PubMed  Google Scholar 

  22. Monti MM, Vanhaudenhuyse A, Coleman MR, Boly M, Pickard JD, Tshibanda L, et al. Willful modulation of brain activity in disorders of consciousness. N Engl J Med. 2010;362(7):579–89. https://doi.org/10.1056/NEJMoa0905370.

    Article  CAS  PubMed  Google Scholar 

  23. Schiff ND. Cognitive motor dissociation following severe brain injuries. JAMA Neurol. 2015;72(12):1413–5. https://doi.org/10.1001/jamaneurol.2015.2899.

    Article  PubMed  Google Scholar 

  24. Kondziella D, Bender A, Diserens K, van Erp W, Estraneo A, Formisano R, et al. European Academy of Neurology guideline on the diagnosis of coma and other disorders of consciousness. Eur J Neurol. 2020. https://doi.org/10.1111/ene.14151.

  25. Giacino JT, Katz DI, Schiff ND, Whyte J, Ashman EJ, Ashwal S, et al. Practice guideline update recommendations 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. Arch Phys Med Rehabil. 2018;99(9):1699–709. https://doi.org/10.1016/j.apmr.2018.07.001.

    Article  PubMed  Google Scholar 

  26. Koch C, Massimini M, Boly M, Tononi G. Neural correlates of consciousness: progress and problems. Nat Rev Neurosci. 2016;17(5):307–21. https://doi.org/10.1038/nrn.2016.22.

    Article  CAS  PubMed  Google Scholar 

  27. Koch C, Tsuchiya N. Attention and consciousness: two distinct brain processes. Trends Cogn Sci. 2007;11(1):16–22. https://doi.org/10.1016/j.tics.2006.10.012.

    Article  PubMed  Google Scholar 

  28. Aru J, Bachmann T, Singer W, Melloni L. Distilling the neural correlates of consciousness. Neurosci Biobehav Rev. 2012;36(2):737–46. https://doi.org/10.1016/j.neubiorev.2011.12.003.

    Article  PubMed  Google Scholar 

  29. Boly M, Massimini M, Tsuchiya N, Postle BR, Koch C, Tononi G. Are the neural correlates of consciousness in the front or in the Back of the cerebral cortex? Clinical and neuroimaging evidence. J Neurosci. 2017;37(40):9603–13. https://doi.org/10.1523/JNEUROSCI.3218-16.2017.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  30. Farisco M, Petrini C. Misdiagnosis as an ethical and scientific challenge. Annali dell'Istituto superiore di sanita. 2014;50(3):229–33. https://doi.org/10.4415/ANN_14_03_05.

    Article  PubMed  Google Scholar 

  31. Zasler ND, Aloisi M, Contrada M, Formisano R. Disorders of consciousness terminology: history, evolution and future directions. Brain Inj. 2019;33(13–14):1684–9. https://doi.org/10.1080/02699052.2019.1656821.

    Article  PubMed  Google Scholar 

  32. Fins JJ, Bernat JL. Ethical, palliative, and policy considerations in disorders of consciousness. Arch Phys Med Rehabil. 2018;99(9):1927–31. https://doi.org/10.1016/j.apmr.2018.07.003.

    Article  PubMed  Google Scholar 

  33. Fins JJ. Disorders of consciousness, past, present, and future. Camb Q Healthc Ethics. 2019;28(4):603–15. https://doi.org/10.1017/S0963180119000719.

    Article  PubMed  Google Scholar 

  34. Monti MM, Laureys S, Owen AM. The vegetative state. BMJ. 2010;341:c3765. https://doi.org/10.1136/bmj.c3765.

    Article  PubMed  Google Scholar 

  35. Thibaut A, Bodien YG, Laureys S, Giacino JT. Minimally conscious state “plus”: diagnostic criteria and relation to functional recovery. J Neurol. 2020;267(5):1245–54. https://doi.org/10.1007/s00415-019-09628-y.

    Article  PubMed  Google Scholar 

  36. Schnakers C, Bauer C, Formisano R, Noe E, Llorens R, Lejeune N, et al. What names for covert awareness? Front Hum Neurosci. 2022;16:971315. https://doi.org/10.3389/fnhum.2022.971315.

    Article  PubMed  PubMed Central  Google Scholar 

  37. Farisco M, Evers K. Neurotechnology and direct brain communication. New insights and responsibilities concerning speechless but communicative subjects. New York: Routledge; 2016.

    Book  Google Scholar 

Download references

Acknowledgments

This work has been funded by the European Union’s Horizon 2020 Framework Programme for Research and Innovation under the specific grant agreement [no. 945539] (Human Brain Project SGA3). Special thanks to Kathinka Evers for insightful comments on a first draft of this chapter.

Author information

Authors and Affiliations

  1. Centre for Research Ethics and Bioethics, Uppsala University, Uppsala, Sweden

    Michele Farisco

  2. Bioethics Unit, Biogem scarl, Biology and Molecular Genetics Research Institute, Ariano Irpino, AV, Italy

    Michele Farisco

Authors
  1. Michele Farisco
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Michele Farisco .

Editor information

Editors and Affiliations

  1. Research Institute, Casa Colina Hospital and Centers for Healthcare, Pomona, CA, USA

    Caroline Schnakers

  2. Coma Science Group GIGA-Consciousness, University of Liège, Liège, Belgium

    Steven Laureys

Rights and permissions

Reprints and permissions

Copyright information

© 2023 The Author(s), under exclusive license to Springer Nature Switzerland AG

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Farisco, M. (2023). The Ethics in the Management of Patients with Disorders of Consciousness. In: Schnakers, C., Laureys, S. (eds) Coma and Disorders of Consciousness. Springer, Cham. https://doi.org/10.1007/978-3-031-50563-8_9

Download citation

  • DOI: https://doi.org/10.1007/978-3-031-50563-8_9

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-031-50562-1

  • Online ISBN: 978-3-031-50563-8

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics

Search

Navigation