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Unlocking the Voices of Patients with Severe Brain Injury

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Abstract

This paper critically examines whether patients with severe brain injury, who can only communicate through assistive neuroimaging technologies, may permissibly participate in medical decisions. We examine this issue in the context of a unique case study from the Brain and Mind Institute at the University of Western Ontario. First, we describe how the standard approach to medical decision making might problematically exclude patients with communication impairments secondary to severe brain injury. Second, we present a modified approach to medical decision making. We argue that this approach might warrant the inclusion of some patients with severe brain injury in low-stakes decisions, or to express preferences. Third, we present a model of supported decision making to address recalcitrant uncertainty. We conclude by suggesting that the modified approach to decision making and supported decision making might allow a patient with severe brain injury to participate in some medical decisions. Our analysis is provisional and has not yet been implemented in practice. Our discussion is intended to generate further debate on approaches to enhancing autonomy in patients with profound motor and cognitive impairments.

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References

  1. Peterson, Andrew, Adrian M. Owen, and Jason Karlawish. 2020. Alive inside. Bioethics 34 (3): 295–305.

    Article  Google Scholar 

  2. Fisher, Carl E., and Paul S. Appelbaum. 2010. Diagnosing consciousness: Neuroimaging, law, and the vegetative state. The Journal of Law, Medicine & Ethics 38 (2): 374–385.

    Article  Google Scholar 

  3. Fins, Joseph J., and Nicholas D. Schiff. 2010. In the blink of the mind’s eye. Hastings Center Report 40 (3): 21–23.

    Article  Google Scholar 

  4. Bendtsen, K. 2013. Communicating with the minimally conscious: Ethical implications in end-of-life care. AJOB Neuroscience 4 (1): 46–51.

    Article  Google Scholar 

  5. Fins, Joseph J. 2018. Mosaic decision making and reemergent agency after severe brain injury. Cambridge Quarterly of Healthcare Ethics. 27 (1): 163–74.

    Article  Google Scholar 

  6. Cairncross, Molly, Andrew Peterson, Andrea Lazosky, Teneille Gofton, and Charles Weijer. 2016. Assessing decision-making capacity in patients with communication impairments. Cambridge Quarterly of Healthcare Ethics 25 (4): 691.

    Article  Google Scholar 

  7. Peterson, Andrew, Jason Karlawish, and Emily Largent. 2020. Supported decision making with people at the margins of autonomy. The American Journal of Bioethics 21 (11): 4–18.

  8. Peterson, Andrew. 2019. A critical analysis of joseph fins’ mosaic decision making: A response to “mosaic decision making and reemergent agency after severe brain injury” (CQ 27 (1)). Cambridge Quarterly of Healthcare Ethics 28 (4): 725–736.

    Article  Google Scholar 

  9. Peterson, Andrew. 2019. Should neuroscience inform judgements of decision-making capacity? Neuroethics 12 (2): 133–151.

    Article  Google Scholar 

  10. Peterson, Andrew, Lorina Naci, Charles Weijer, Damian Cruse, Davinia Fernández-Espejo, Mackenzie Graham, and Adrian M. Owen. 2013. Assessing decision-making capacity in the behaviorally nonresponsive patient with residual covert awareness. AJOB Neuroscience 4 (4): 3–14.

    Article  Google Scholar 

  11. Peterson, Andrew, Lorina Naci, Charles Weijer, and Adrian M. Owen. 2013. A principled argument, but not a practical one. AJOB Neuroscience 4 (1): 52–53.

    Article  Google Scholar 

  12. Maas, Andrew IR., David K. Menon, P. David Adelson, Nada Andelic, Michael J. Bell, Antonio Belli, Peter Bragge, et al. 2017. Traumatic brain injury: integrated approaches to improve prevention, clinical care, and research. The Lancet Neurology 16 (12): 987–1048.

    Article  Google Scholar 

  13. Greenwald, Brian D., Derek M. Burnett, and Michelle A. Miller. 2003. Brain injury: Epidemiology and pathophysiology. Archives of Physical Medicine and Rehabilitation 84: S3–S7.

    Article  Google Scholar 

  14. Thurman, David, and Janet Guerrero. 1999. Trends in hospitalization associated with traumatic brain injury. JAMA 282 (10): 954–957.

    Article  Google Scholar 

  15. Young, G. Bryan. 2009. Coma. Annals of the New York Academy of Sciences 1157 (1): 32–47.

    Article  Google Scholar 

  16. Giacino, Joseph T., Joseph J. Fins, Steven Laureys, and Nicholas D. Schiff. 2014. Disorders of consciousness after acquired brain injury: The state of the science. Nature Reviews Neurology 10 (2): 99.

    Article  Google Scholar 

  17. Ashwal, S., R. Cranford, J.L. Bernat, G. Celesia, D. Coulter, H. Eisenberg, E. Myer, and the Multi-Society Task Force on PVS. 1994. Medical aspects of the persistent vegetative state. New England Journal of Medicine 330 (21): 1499–1508.

    Article  Google Scholar 

  18. Laureys, Steven, Gastone G. Celesia, Francois Cohadon, Jan Lavrijsen, José León-Carrión, Walter G. Sannita, Leon Sazbon, et al. 2010. Unresponsive wakefulness syndrome: a new name for the vegetative state or apallic syndrome. BMC Medicine 8 (1): 1–4.

    Article  Google Scholar 

  19. Giacino, Joseph T., Stephen Ashwal, Nancy Childs, Ronald Cranford, Bryan Jennett, Douglas I. Katz, James P. Kelly, et al. 2002. The minimally conscious state definition and diagnostic criteria. Neurology 58 (3): 349–353.

    Article  Google Scholar 

  20. Giacino, Joseph T., Douglas I. Katz, Nicholas D. Schiff, John Whyte, Eric J. Ashman, Stephen Ashwal, Richard Barbano, et al. 2018. 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. Archives of Physical Medicine and Rehabilitation 99 (9): 1699–1709.

    Article  Google Scholar 

  21. Edlow, Brian L., Jan Claassen, Nicholas D. Schiff, and David M. Greer. 2020. Recovery from disorders of consciousness: mechanisms, prognosis and emerging therapies. Nature Reviews Neurology 17 (3): 135–156.

  22. Cruse, Damian, Srivas Chennu, Camille Chatelle, Tristan A. Bekinschtein, Davinia Fernández-Espejo, John D. Pickard, Steven Laureys, and Adrian M. Owen. 2012. Bedside detection of awareness in the vegetative state: A cohort study. The Lancet 378 (9809): 2088–2094.

    Article  Google Scholar 

  23. Fernández-Espejo, Davinia, and Adrian M. Owen. 2013. Detecting awareness after severe brain injury. Nature Reviews Neuroscience 14 (11): 801–809.

    Article  Google Scholar 

  24. Monti, Martin M., Audrey Vanhaudenhuyse, Martin R. Coleman, Melanie Boly, John D. Pickard, Luaba Tshibanda, Adrian M. Owen, and Steven Laureys. 2010. Willful modulation of brain activity in disorders of consciousness. New England Journal of Medicine 362 (7): 579–589.

    Article  Google Scholar 

  25. Naci, Lorina, Rhodri Cusack, Vivian Z. Jia, and Adrian M. Owen. 2013. The brain’s silent messenger: Using selective attention to decode human thought for brain-based communication. Journal of Neuroscience 33 (22): 9385–9393.

    Article  Google Scholar 

  26. Owen, Adrian M., Martin R. Coleman, Melanie Boly, Matthew H. Davis, Steven Laureys, and John D. Pickard. 2006. Detecting awareness in the vegetative state. Science 313 (5792): 1402–1402.

    Article  Google Scholar 

  27. Schiff, Nicholas D. 2015. Cognitive motor dissociation following severe brain injuries. JAMA Neurology 72 (12): 1413–1415.

    Article  Google Scholar 

  28. Edlow, Brian L. 2018. Covert consciousness: Searching for volitional brain activity in the unresponsive. Current Biology 28 (23): R1345–R1348.

    Article  Google Scholar 

  29. Boly, Mélanie., M.R. Coleman, M.H. Davis, A. Hampshire, D. Bor, P.A. Gustave Moonen, J.D. Maquet, Steven Laureys Pickard, and A.M. Owen. 2007. When thoughts become action: an fMRI paradigm to study volitional brain activity in non-communicative brain injured patients. Neuroimage 36 (3): 979–992.

    Article  Google Scholar 

  30. Kondziella, Daniel, Christian K. Friberg, Vibe G. Frokjaer, Martin Fabricius, and Kirsten Møller. 2016. Preserved consciousness in vegetative and minimal conscious states: Systematic review and meta-analysis. Journal of Neurology, Neurosurgery & Psychiatry 87 (5): 485–492.

    Article  Google Scholar 

  31. Schnakers, Caroline, Michaela Hirsch, Enrique Noé, Roberto Llorens, Nicolas Lejeune, Vigneswaran Veeramuthu, Sabrina De Marco, et al. 2020. Covert cognition in disorders of consciousness: A meta-analysis. Brain Sciences 10 (12): 930.

    Article  Google Scholar 

  32. Naci, Lorina, and Adrian M. Owen. 2013. Making every word count for nonresponsive patients. JAMA Neurology 70 (10): 1235–1241.

    Google Scholar 

  33. Graham, M., C. Weijer, D. Cruse, D. Fernandez-Espejo, T. Gofton, L.E. Gonzalez-Lara, A. Lazosky, L. Naci, L. Norton, A. Peterson, and K.N. Speechley. 2015. An ethics of welfare for patients diagnosed as vegetative with covert awareness. AJOB Neuroscience. 6 (2): 31–41.

    Article  Google Scholar 

  34. Tung, Jasmine, Kathy N. Speechley, Teneille Gofton, Laura E. Gonzalez-Lara, Mackenzie Graham, Lorina Naci, Andrew H. Peterson, Adrian M. Owen, and Charles Weijer. 2019. Towards the assessment of quality of life in patients with disorders of consciousness. Quality of Life Research, 1–11.

  35. National Commission. The Belmont report: Ethical principles and guidelines for the protection of human subjects of research. In Prepared by The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. 1978. Last accessed Oct 8, 2021. https://www.hhs.gov/ohrp/regulations-and-policy/belmont-report/read-the-belmont-report/index.html

  36. Beauchamp, Tom L., and James F. Childress. 2001. Principles of biomedical ethics. USA: Oxford University Press.

    Google Scholar 

  37. Buchanan, Allen E., and Dan W. Brock. 1989. Deciding for others: The ethics of surrogate decision making. Cambridge: Cambridge University Press.

    Google Scholar 

  38. President’s Commission for the Study of Ethical Problems in Medicine, Biomedical, Behavioral Research (US). Making health care decisions v. 1. 1982.

  39. Appelbaum, Paul S., and Thomas Grisso. 1988. Assessing patients’ capacities to consent to treatment. New England Journal of Medicine 319 (25): 1635–1638.

    Article  Google Scholar 

  40. Appelbaum, P.S. 2007. Assessment of patients’ competence to consent to treatment. New England Journal of Medicine 357 (18): 1834–1840.

  41. Grisso, Thomas, and Paul S. Appelbaum. 1998. Assessing competence to consent to treatment: A guide for physicians and other health professionals. New York: Oxford University Press.

    Google Scholar 

  42. Tan, D.J., P.T. Hope, D.A. Stewart, and P.R. Fitzpatrick. 2006. Competence to make treatment decisions in anorexia nervosa: Thinking processes and values. Philos Psychiatr Psychol. 13 (4): 267–282.

    Article  Google Scholar 

  43. Charland, L.C. 2013. Ethical and conceptual issues in eating disorders. Current Opinion in Psychiatry 26 (6): 562–565.

    Article  Google Scholar 

  44. Russo, Maria Julieta, Valeria Prodan, Natalia Nerina Meda, Lucila Carcavallo, Anibal Muracioli, Liliana Sabe, Lucas Bonamico, Ricardo Francisco Allegri, and Lisandro Olmos. 2017. High-technology augmentative communication for adults with post-stroke aphasia: A systematic review. Expert Review of Medical Devices 14 (5): 355–370.

    Article  Google Scholar 

  45. Oriani, M., E. Moniz-Cook, G. Binetti, G. Zanieri, G.B. Frisoni, C. Geroldi, L.P. De Vreese, and Orazio Zanetti. 2003. An electronic memory aid to support prospective memory in patients in the early stages of Alzheimer’s disease: a pilot study. Aging & Mental Health 7 (1): 22–27.

    Article  Google Scholar 

  46. Cea, Christine D., and Celia B. Fisher. 2003. Health care decision-making by adults with mental retardation. Mental Retardation 41 (2): 78–87.

    Article  Google Scholar 

  47. Vellinga, A., J.H. Smit, E. Van Leeuwen, W. Van Tilburg, and C. Jonker. 2004. Competence to consent to treatment of geriatric patients: Judgements of physicians, family members and the vignette method. International Journal of Geriatric Psychiatry 19 (7): 645–654.

    Article  Google Scholar 

  48. Faden, Ruth R., and Tom L. Beauchamp. 1986. A history and theory of informed consent. Oxford University Press.

    Google Scholar 

  49. Grisso, Thomas, and Paul S. Appelbaum. 1991. Mentally ill and non-mentally-ill patients’ abilities to understand informed consent disclosures for medication: Preliminary data. Law and Human Behavior 15 (4): 377.

    Article  Google Scholar 

  50. Peterson, Andrew, Sean Aas, and David Wasserman. 2021. What justifies the allocation of health care resources to patients with disorders of consciousness? AJOB-Neuroscience 12 (2–3): 127–139.

  51. Glannon, Walter. 2014. Ethical issues with brain-computer interfaces. Frontiers in systems neuroscience 8: 136.

    Article  Google Scholar 

  52. Drane, James F. 1984. Competency to give an informed consent: A model for making clinical assessments. JAMA 252 (23): 925–927.

    Article  Google Scholar 

  53. Francis, Leslie Pickering, and Anita Silvers. 2007. Liberalism and individually scripted ideas of the good: Meeting the challenge of dependent agency. Social Theory and Practice 33 (2): 311–334.

    Article  Google Scholar 

  54. Francis, Leslie Pickering. 2009. Understanding autonomy in light of intellectual disability. In Disability and Disadvantage, eds. K. Brownlee and A. Cureton, 200–215. New York: Oxford University Press.

  55. Silvers, Anita, and Leslie Pickering Francis. 2009. Thinking about the good: reconfiguring liberal metaphysics (or not) for people with cognitive disabilities. Metaphilosophy 40 (3–4): 475–498.

    Article  Google Scholar 

  56. Largent, Emily A., and Andrew Peterson. 2021. Supported decision-making in the United States and abroad. Journal of Health Care Law and Policy 23 (2): 271.

    Google Scholar 

  57. Devi, Nandini, Jerome Bickenbach, and Gerold Stucki. 2011. Moving towards substituted or supported decision-making? Article 12 of the Convention on the Rights of Persons with Disabilities. Alter 5 (4): 249–264.

    Article  Google Scholar 

  58. Kohn, Nina A., Jeremy A. Blumenthal, and Amy T. Campbell. 2012. Supported decision-making: A viable alternative to guardianship. Penn St. L. Rev. 117: 1111.

    Google Scholar 

  59. Fins, Joseph J., and Barbara Pohl. 2016. Guardianship and the injured brain: Representation and the rights of patients and families. In Finding consciousness: The neuroscience, ethics, and law of severe brain damage, ed. W. Sinnott-Armstrong, 246–259. New York: Oxford University Press.

    Chapter  Google Scholar 

  60. Brooks, D.N., and W. McKinlay. 1983. Personality and behavioural change after severe blunt head injury–a relative’s view. Journal of Neurology, Neurosurgery & Psychiatry. 46 (4): 336–344.

    Article  Google Scholar 

  61. Milders, M., S. Fuchs, and J.R. Crawford. 2003. Neuropsychological impairments and changes in emotional and social behaviour following severe traumatic brain injury. Journal of Clinical and Experimental Neuropsychology. 25 (2): 157–172.

    Article  Google Scholar 

  62. Ponsford, J.L., M.G. Downing, J. Olver, M. Ponsford, R. Acher, M. Carty, and G. Spitz. 2014. Longitudinal follow-up of patients with traumatic brain injury: Outcome at two, five, and ten years post-injury. Journal of Neurotrauma. 31 (1): 64–77.

    Article  Google Scholar 

  63. Ponsford, J., and M. Schoenberger. 2010. Family functioning and emotional state two and five years after traumatic brain injury. Journal of the International Neuropsychological Society. 16 (2): 306–317.

    Article  Google Scholar 

  64. State of New Jersey v. Stubblefield, 176 A.3d 213 (2017)

  65. Mintz, Kevin. 2017. Ableism, ambiguity, and the Anna Stubblefield case. Disability & Society 32 (10): 1666–1670.

    Article  Google Scholar 

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Acknowledgements

AP is supported by the Greenwall Faculty Scholars Program and the National Institute on Aging (R21AG069805). KM is supported by a T32 Postdoctoral Fellowship through the National Human Genome Research Institute. AMO is a Fellow of the Canadian Institute for Advanced Research (CIFAR) program on Brain, Mind, and Consciousness.

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Correspondence to Andrew Peterson.

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Peterson, A., Mintz, K. & Owen, A.M. Unlocking the Voices of Patients with Severe Brain Injury. Neuroethics 15, 9 (2022). https://doi.org/10.1007/s12152-022-09492-0

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