Hostname: page-component-cd9895bd7-jn8rn Total loading time: 0 Render date: 2024-12-18T17:47:35.873Z Has data issue: false hasContentIssue false
  • English
  • Français

Consciousness, Conflations, and Disability Rights: Denials of Care for Children in the “Minimally Conscious State”

Published online by Cambridge University Press:  04 March 2022

Joseph J. Fins
Get access Rights & Permissions [Opens in a new window]

Abstract

This essay critiques the fiercely utilitarian allocation scheme of Cameron et al. Children have no hope of recovery if their lives are cut short based on administrative protocols that misrepresent the nature of their conditions. Unilateral futility judgements - especially those based on a false predicate - are discriminatory. When considering the best interests of children, we should see possibility in disability and not advance ill-informed utilitarianism.

Keywords

Disorders of ConsciousnessMinimally Conscious StatePediatric NeurologyAccess to CareDisability Law
Type
Independent Articles: Commentary
Information
Journal of Law, Medicine & Ethics , Volume 50 , Issue 1: Health Law and Anti-Racism: Reckoning and Response , Spring 2022 , pp. 181 - 183
Copyright
© 2022 The Author(s)

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Cameron, J., Savulescu, J., and Wilkinson, D., “Raqeeb, Haastrup and Evans: Seeking Consistency through a Distributive-Justic Based, Approach to Limitation of Treatment in the Context of Dispute,” Journal of Law, Medicine & Ethics 50, no. 1 (2022): 169–180.CrossRefGoogle Scholar
Daniels, N., “Why Saying No to Patients in the United States Is So Hard,” New England Journal of Medicine 314, no. 21 (1986): 1380–1383.CrossRefGoogle ScholarPubMed
Giacino, J.T., Ashwal, S., Childs, N., Cranford, R., Jennett, B., Katz, D.I., Kelly, J.P., Rosenberg, J.H., Whyte, J., Zafonte, R.D., and Zasle, N.D., “The Minimally Conscious State: Definition and Diagnostic Criteria,” Neurology 58, no. 3 (2002): 349–353.CrossRefGoogle ScholarPubMed
Jennett, B. and Plum, F., “Persistent Vegetative State after Brain Damage. A Syndrome in Search of a Name,” The Lancet 1, no. 7753 (1972): 734–77.CrossRefGoogle ScholarPubMed
Laureys, S., Faymonville, M.E., Degueldre, C., Fiore, G.D., Damas, P., Lambermont, B., Janssens, N., Aerts, J., Franck, G., Luxen, A., Moonen, G., Lamy, M., and Maquet, P., “Auditory Processing in the Vegetative State,” Brain 123, part 8 (2000): 1589–1601.CrossRefGoogle ScholarPubMed
Giacino, J.T., Fins, J.J., Laureys, S., and Schiff, N.D., “Disorders of Consciousness afterAcquired Brain Injury: The State of the Science,” Nature Reviews Neurology 10, no. X (issue number?) (2014): 99–114.CrossRefGoogle ScholarPubMed
Schiff, N.D., Rodriguez-Moreno, D., Kamal, A., Kim, K., Giacino, J., Plum, F., and Hirsch, J., “fMRI Reveals Large Scale Network Activation in Minimally Conscious Patients,” Neurology 64, no. 3 ( 2005): 514–523.CrossRefGoogle ScholarPubMed
Chatelle, C., Thibaut, A., Whyte, J., De Val, M.D., Laureys, S., and Schnakers, C., “Pain Issues in Disorders of Consciousness,” Brain Injury 28, no. 9 (2014): 1202–1208.CrossRefGoogle ScholarPubMed
Fins, J.J., “Personalized Medicine and Disorders of Consciousness: An Alternate Convergence of Knowledge towards a New Clinical Nosology,” in Barilan, Y.M., Brusa, M., and Ciechanove, A., eds., Can Precision Medicine Be Personal; Can Personalized Medicine Be Precise? (Oxford University Press, In Press).Google Scholar
Giacino, J.T., Whyte, J., Bagiella, E., Kalmar, K., Childs, N., Khademi, A., Eifert, B., Long, D., Katz, D.I., Cho, S., Yablon, S.A., Luther, M., Hammond, F.M., Nordenbo, A., Novak, P., Mercer, W., Maurer-Karattup, P., and Sherer, M., “Placebo-Controlled Trial of Amantadine for Severe Traumatic Brain Injury,” New England Journal of Medicine 366, no. 9 (201): 819–826.Google Scholar
Schiff, N.D., Giacino, J.T., Kalmar, K., Victor, J.D., Baker, K., Gerber, M., Fritz, B., Eisenberg, B., O’Connor, J., Kobylarz, E.J., Farris, S., Machado, A., McCagg, C., Plum, F., Fins, J.J., Rezai, A.R., “Behavioral Improvements with Thalamic Stimulation after Severe Traumatic Brain Injury,” Nature 448, no. 7153 (2007): 600–603.CrossRefGoogle ScholarPubMed
Giacino, J.T., Katz, D.I., Schiff, N.D., et al. “Comprehensive Systematic Review Update 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,” Neurology 91, no. 10 (2018): 461–470; J.T. Giacino, D.I. Katz, N.D. Schiff, et al. “Practice Guideline: Disorders of Consciousness,” Neurology 91, no. 10 (2018): 450-460; J.J. Fins and J.L. Bernat “Ethical, Palliative, and Policy Considerations in Disorders of Consciousness,” Neurology 91, no. 10 (2018): 471-475.CrossRefGoogle Scholar
Schnakers, C., Vanhaudenhuyse, A., Giacino, J., Ventura, M., Boly, M., Majerus, S., and Moonen, G., Laureys, S., “Diagnostic Accuracy of the Vegetative and Minimally Conscious State: Clinical Consensus versus Standardized Neurobehavioral Assessment,” BMC Neurology 9 (2009): 35.CrossRefGoogle ScholarPubMed
Lammi, M.H., Smith, V.H., Tate, R.L., and Taylor, C.M., “The Minimally Conscious State and Recovery Potential: A Follow-Up Study 2 to 5 Years after Traumatic Brain Injury,” Archives of Physical Medicine and Rehabilitation 2005;86(4):746–754.Google Scholar
Schiff, N.D., “Cognitive Motor Dissociation Following Severe Brain Injuries,” JAMA Neurology 72, no. 12 (2015): 1413–1415.CrossRefGoogle ScholarPubMed
Alvarez, G., Suskauer, S.J., and Slomine, B., “Clinical Features of Consciousness in Young Children,” Archives of Physical Medicine and Rehabilitation 100, no. 4 (2019): 687–694.CrossRefGoogle ScholarPubMed
Kalmar, K. and Giacino, J.T., “The JFK Coma Recovery Scale-Revised: measurement characteristics and diagnostic utility,” Archives of Physical Medicine and Rehabilitation 15, no. 3-4 (2005): 454–460.Google Scholar
Slomine, B.S., Suskauer, S.J., Nicholson, R., and Giacino, J.T., “Preliminary Validation of the Coma Recovery Scale for Pediatrics in Typically Developing Children,” Brain Injury 33, no. 13-14 (2019): 1640–1645.CrossRefGoogle Scholar
Thengone, D.J., Voss, H.U., Fridman, E.A., and Schiff, N.D., “Local Changes in Network Structure Contribute to Late Communication Recovery in Severe Brain Injury,” Science Translational Medicine 8, no. 368 (2016): 368re5.CrossRefGoogle ScholarPubMed
Fins, J.J., Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness (New York: Cambridge University Press, 2015).CrossRefGoogle Scholar
UN General Assembly, Convention on the Rights of Persons with Disabilities: resolution / adopted by the General Assembly, 24 January 2007, A/RES/61/106, available at <https://www.refworld.org/docid/45f973632.html> (last visited December 22, 2021); Americans with Disabilities Act, 42 U.S.C. 12101 (1990); T. Ezer, M.S. Wright, and J.J. Fins, “The Neglect of Persons with Severe Brain Injury: An International Human Rights Analysis,” Health and Human Rights Journal 22, no. 1 (2020): 265-278.+(last+visited+December+22,+2021);+Americans+with+Disabilities+Act,+42+U.S.C.+12101+(1990);+T.+Ezer,+M.S.+Wright,+and+J.J.+Fins,+“The+Neglect+of+Persons+with+Severe+Brain+Injury:+An+International+Human+Rights+Analysis,”+Health+and+Human+Rights+Journal+22,+no.+1+(2020):+265-278.>Google Scholar
Hermeren, G., “The Principle of Proportionality Revisited: Interpretations and Applications,” Medicine, Health Care, and Philosophy 15, no. 4 (2012): 373–382.CrossRefGoogle ScholarPubMed
Fins, J.J., Wright, M.S., and Bagenstos, S.R., “Disorders of Consciousness and Disability Law,” Mayo Clinic Proceedings 95, no. 8 (2020): 1732–1739; M.S. Wright, N. Varsava, J. Ramirez, K. Edwards, N. Guevremont, T. Ezer, and J.J. Fins, “Justice and Severe Brain Injury: Legal Remedies for a Marginalized Population,” Florida State University Law Review 45, no. 2 (2018): 313-382; Z.E. Shapiro, D. Chaarushena, C. Lawrence, J. Wilner, A. Rabkin Golden, J. Wilner, A. Durkin, Z.M. Adams, W. Zhao, K. James, A. Pan, M.S. Wright, and J.J. Fins, “Olmstead Enforcements for Moderate to Severe Brain Injury: The Pursuit of Civil Rights through the Application of Law, Neuroscience, and Ethics,” Tulane Law Review 95, no. 3 (2021): 525-600.CrossRefGoogle Scholar
Wright, M.S. and Fins, J.J., “Rehabilitation, Education, and the Integration of Individuals with Severe Brain Injury into Civil Society: Towards an Expanded Rights Agenda in Response to New Insights from Translational Neuroethics and Neuroscience,” Yale Journal of Health Policy, Law, and Ethics 16, no. 2 (2016): 233–288.Google ScholarPubMed
Fins, J.J. and Wright, M.S., “Rights Language and Disorders of Consciousness: A Call for Advocacy,” Brain Injury 32, no. 5 (2018): 670–674.CrossRefGoogle Scholar
“Blythedale Children’s Hospital: Anything is possible,” Visionaries with Sam Waterson. PBS preview, Blythedale Children’s Hospital, October 26, 2021, available at <https://www.youtube.com/watch?v=wZHlgwrMrYI> (last visited December 22, 2021).+(last+visited+December+22,+2021).>Google Scholar