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The Case of Hannah Capes: How Much Does Consciousness Matter?

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Abstract

A recent legal case involving an ambiguous diagnosis in a woman with a severe disorder of consciousness raises pressing questions about treatment withdrawal in a time when much of what experts know about disorders of consciousness is undergoing revision and refinement. How much should diagnostic certainty about consciousness matter? For the judge who refused to allow withdrawal of artificial nutrition and hydration, it was dispositive. Rather than relying on substituted judgment or best interests to determine treatment decisions, he ruled that withdrawal was categorically prohibited, even as he concluded that Hannah Capes was more likely than not in a permanent vegetative state. In many jurisdictions, his decision would likely be consistent with existing law. Evolving technological advances have demonstrated that biologically distinct diagnoses incorporated into state laws may be difficult to establish even under ideal conditions. We offer the Capes case for purposes of examining the consequences of enshrined legal distinctions between permanent vegetative state and other severe disorders of consciousness. Insistence on proof of the permanent absence of consciousness before treatment withdrawal is allowed fails to respect the rights of persons with disorders of consciousness. Even the well-established rights to treatment withdrawal for those in a permanent vegetative state may be in jeopardy if reform is not undertaken.

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Notes

  1. Information about Hannah Capes’ medical history was obtained from public testimony at trial and documents that have been made part of the public record.

  2. In 1983, Virginia followed many states in passing an end-of-life decision-making statute. See the Natural Death Act, V.A. H.D. REP. No. 32 (1983). The initial legislation limited advance directives to “terminal conditions.” See Va. Code Ann § 54–325.8:3 (1983) (recodified as § 54.1–2983). A 1991 amendment altered the definition of “terminal condition” to include PVS. See H.B. 1615, 1991 Leg., Reg. Sess (VA. 1991). The provision was largely unchanged until 2009 when a major overhaul of Virginia’s law was undertaken. See H.B. 2396, 2009 Leg., Reg. Sess (Va. 2009). Any language limiting advance directives to terminals conditions was removed. See Va. Code Ann. § 54.1–2983.

  3. From 1983 to 1992, Virginia law provided authority to surrogates to withdraw life-prolonging procedures only from patients with terminal conditions without addressing surrogates’ authority to refuse other unwanted treatment. See Va. Code Ann. § 54.1–2986 (1983) and Va Code Ann. § 54.1–2986 (1991). In 1992, this authority was expanded to allow surrogates to provide, withhold, or withdraw any “medical or surgical care or treatment” on behalf of patients. See S.B. 254, 1992 Leg., Reg. Sess. (Va. 1992). Under the 1992 bill, the only articulated restrictions on the surrogate’s power were that the surrogate could not authorize nontherapeutic sterilization, abortion, psychosurgery, admission to a psychiatric hospital, and could not act knowing that such action was protested by the patient.

  4. The guardian ad litem acknowledged in his report that “no authority could be located” in Virginia adopting the “clear and convincing” evidentiary standard for these decisions, but nevertheless “contend[ed]” that §54.1–‐2985.1, the Virginia provision that sets the evidentiary standard for reviewing decisions made under the Health Care Decisions Act, “establishes a ‘preponderance of evidence’ standard only for initial proceedings, a temporary injunction for example, and not for a final determination on the merits.” [32, p. 6]).

References

  1. Capes C, Kim S. 2016. CL15000132–00 (Green County Circuit Court, Virginia, September 14–16, 2016).

  2. Quinlan. 1976. In re, 70 N.J. 10, 355 A.2d 647.

  3. Cruzan V. 1990. Director, Missouri Department of Health, 497 U.S. 261.

  4. Giacino, Joseph T., S. Ashwal, N. Childs, et al. 2002. The minimally conscious state: Definition and diagnostic criteria. Neurology 58 (3): 349–353. https://doi.org/10.1212/wnl.58.3.349.

    Article  Google Scholar 

  5. Wendland. 2001. Conservatorship of, 26 Cal.4th 519, 28 P.2d 151.

  6. Martin. 1995. In re, 450 Mich. 204, 538 N.W. 2d 399.

  7. Code Ann VA. 2009. § 54.1–2986.1(B). https://law.lis.virginia.gov/vacode/title54.1/chapter29/section54.1-2982/ Accessed 30 May 2021.

  8. Fins, Joseph J. 2015. Rights Come to Mind: Brain Injury, Ethics, and the Struggle for Consciousness. Cambridge: Cambridge University Press.

    Book  Google Scholar 

  9. Jennett, B., Plum F. 1972. Persistent vegetative state after brain damage: a syndrome in search of a name. Lancet 299 (7753): 734–737.

  10. Multi-Society Task Force on PVS. 1994. Medical aspects of the persistent vegetative state (1). New England Journal of Medicine 330 (21): 1499–1508. https://www.nejm.org/doi/full/https://doi.org/10.1056/NEJM199405263302107#:~:text=The%20vegetative%20state%20can%20be,noxious%20stimuli%3B%20(3)%20no. Accessed 30 May 2021.

  11. Laureys, Steven, Gastone G. Celesia, Francois Cohadon, et al. 2010. Unresponsive wakefulness syndrome: A new name for the vegetative state or apallic syndrome. BMC Medicine 8: 68. https://doi.org/10.1186/1741-7015-8-68.

    Article  Google Scholar 

  12. Fins, Joseph J. and James L. Bernat. 2018. Ethical, palliative, and policy considerations in disorders of consciousness. Neurology 91(10): 471–475. https://doi.org/10.1212/WNL.0000000000005927

  13. Schiff, Nicholas D. 2015. Cognitive motor dissociation following severe brain injuries. JAMA Neurology 72 (12): 1413–1415. https://doi.org/10.1001/jamaneurol.2015.2899.

    Article  Google Scholar 

  14. Giacino, Joseph T., Douglas I. Katz, Nicholas D. Schiff, et al. 2018. Practical 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. Neurology 91 (10): 450-460.

  15. Code Ann, VA. 2017. § 54.1–2982. https://law.lis.virginia.gov/vacodefull/title54.1/chapter29/article8/. Accessed 30 May 2021.

  16. Bruno, Marie-Aurélie., Audrey Vanhaudenhuyse, Aurore Thibaut, Gustave Moonen, and Steven Laureys. 2011. From unresponsive wakefulness to minimally conscious PLUS and functional locked-in syndrome: Recent advances in our understanding of disorders of consciousness. Journal of Neurology 258 (7): 1373–1384. https://doi.org/10.1007/s00415-011-6114-x.

    Article  Google Scholar 

  17. Giacino, Joseph T., Douglas I. Katz, Nicholas D. Schiff et al. 2018. 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 (10): 461–470.

  18. Schnakers, Caroline, Audrey Vanhaudenhuyse, Joseph Giacino, Manfredi Ventura, Melanie Boly, Steve Marjerus, Gustave Moonen, and Steven Laureys. 2009. Diagnostic accuracy of the vegetative and minimally conscious state: Clinical consensus versus standardized neurobehavioral assessment. BMC Neurology 9 (2009): 35. https://doi.org/10.1186/1471-2377-9-35.

    Article  Google Scholar 

  19. Kalmer, Kathleen, and Joseph T. Giacino. 2005. The JFK Coma Recovery Scale – Revised. Neuropsychological Rehabilitation 15 (3–4): 454–460. https://doi.org/10.1080/09602010443000425.

    Article  Google Scholar 

  20. Stender, Johan, Olivia Gosseries, Marie-Aurélie. Bruno, et al. 2014. Diagnostic precision of PET imaging and functional MRI in disorders of consciousness: A clinical validation study. Lancet 384 (9942): 514–522. https://doi.org/10.1016/S0140-6736(14)60042-8.

    Article  Google Scholar 

  21. 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. https://doi.org/10.1126/science.1130197.

    Article  Google Scholar 

  22. 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): 570–589. https://doi.org/10.1056/NEJMoa0905370.

    Article  Google Scholar 

  23. Transcript of Record, Capes v. Kim, CL15000132–00 (Green County Circuit Court, Virginia September 14–16, 2016).

  24. Va. Code Ann. § 54.1–2983 (2010). https://law.lis.virginia.gov/vacodefull/title54.1/chapter29/article8/. Accessed 30 May 2021.

  25. Uniform Health Care Decisions Act. 1993. https://www.uniformlaws.org/viewdocument/final-act-with-comments-45?CommunityKey=63ac0471-5975-49b0-8a36-6a4d790a4edf&tab=librarydocuments. Accessed 28 October 2021.

  26. Sabatino, Charles P. 2004. The new Uniform Health Care Decisions Act: Paving a health care decisions superhighway? Maryland Law Review 53 (4): 1238–1254.

    Google Scholar 

  27. Code Ann, VA. 2010. § 54.1–2986. https://law.lis.virginia.gov/vacodefull/title54.1/chapter29/article8/. Accessed 30 May 2021.

  28. Code Ann, VA. 2017. § 54.1–2988. https://law.lis.virginia.gov/vacode/title54.1/chapter29/section54.1-2988/. Accessed 30 May 2021.

  29. Code Ann, VA. 2009. § 54.1–2985.1. https://law.lis.virginia.gov/vacode/title54.1/chapter29/section54.1-2985.1/ . Accessed 30 May 2021.

  30. Code Ann, VA. 2015. § 54.1–2984. https://law.lis.virginia.gov/vacode/title54.1/chapter29/section54.1-2984/ . Accessed 30 May 2021.

  31. Graham, CC. 2016. Answer and Report, Clifton Capes v. Sharon Kim, CL15000132–00 (Green County Circuit Court, Virginia September 14–16, 2016).

  32. Code Ann, VA. 2018. § 54.1–2990. https://law.lis.virginia.gov/vacode/title54.1/chapter29/section54.1-2990/ . Accessed 30 May 2021.

  33. Gilmore v. Finn. 2008. 527 S.E.2d 426.

  34. Fagerlin, A, Carl E. Schneider. 2004. Enough: the failure of the living will. The Hastings Center Report 34(2): 30–42. https://deepblue.lib.umich.edu/bitstream/handle/2027.42/90575/3527683.pdf?sequence=1&isAllowed=y. Accessed 30 May 2021.

  35. Cerminara, Kathy L., Joseph Kadis. 2018. Give me liberty to choose (a better) death: respecting autonomy more fully in advance directive statutes. St. Louis University Journal of Health Law and Policy 10(1): 67–92. https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3118710 . Accessed 30 May 2021.

  36. Parker, J Clint, and Daniel S. Goldberg. 2016. A legal and ethical analysis of the effects of triggering conditions on surrogate decision-making in end-of-life care in the US. HEC Forum 28 (1): 11–33. https://doi.org/10.1007/s10730-015-9279-3.

    Article  Google Scholar 

  37. Fla. Stat. Ann. 2020. Sec. § 765.305 (2)(b). https://www.flsenate.gov/Laws/Statutes/2012/765.305.

  38. Pope, T.M. 2012. Physicians and safe harbor legal immunity. Annals of Health Law 21: 121–135. https://open.mitchellhamline.edu/facsch/390/. Accessed 30 May 2021.

  39. Larriviere, Dan, and Richard J. Bonnie. 2006. Terminating artificial nutrition and hydration in persistent vegetative state patients: Current and proposed state laws. Neurology 66 (11): 1624–1628. https://doi.org/10.1212/01.wnl.0000217133.21665.55.

    Article  Google Scholar 

  40. Meisel, Alan, and Kathleen L. Cerminara. 2004. Right to Die: The Law of End-of-Life Decision Making, 3rd ed. New York: Wolters Kluwer Law & Business.

    Google Scholar 

  41. Dresser, Rachel. 2003. Precommitment: a misguided strategy for securing death with dignity. Texas Law Review 81(7): 1823–1847. https://www.researchgate.net/publication/8238328_Precommitment_A_misguided_strategy_for_securing_death_with_dignity. Accessed 30 May 2021.

  42. Crossley, Mary. 2017. Ending-life decisions; some disability perspectives. Georgia State University Law Review 33 (4): 893–922.

    Google Scholar 

  43. Johnson, L. Syd. 2011. The right to die in the minimally conscious state. Journal of Medical Ethics 37 (3): 175–178. https://doi.org/10.1136/jme.2010.038877.

    Article  Google Scholar 

  44. Fins, Joseph J. 2019. Once and future clinical neuroethics: A history of what was and what might be. Journal of Clinical Ethics 30 (1): 27–34.

    Google Scholar 

  45. Fins JJ, M.S. Wright, C. Kraft, A. Rogers, M.B. Romani, S.Godwin, M.R. Ulrich. 2016. Whither the "improvement standard"? Coverage for severe brain injury after Jimmo v. Sebelius. Journal of Law, Medicine & Ethics. 2016 Mar;44(1):182–93. https://doi.org/10.1177/1073110516644209. PMID: 27256134.

  46. Shepherd, Lois L. The end of end-of-life law. North Carolina Law Review 92(5): 1693–1748. https://scholarship.law.unc.edu/nclr/vol92/iss5/9/. Accessed 14 Feb 2022.

  47. Di, H.B., S.M. Yu, X.C. Weng, et al. 2007. Cerebral response to the patient’s own name in the vegetative and minimally conscious states. Neurology 68 (12): 895–899. https://doi.org/10.1212/01.wnl.0000258544.79024.d0.

    Article  Google Scholar 

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Acknowledgements

The authors are grateful for the expertise of neurologist Dr. David Lapides, who contributed to earlier versions of this paper as a faculty member of the University of Virginia, and to the research assistance of Jordan Taylor, while an intern in the Center for Health Humanities and Ethics at the University of Virginia. The authors also thank the anonymous reviewers of previous versions of this paper for their thoughtful comments and suggestions.

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Authors and Affiliations

  1. Center for Health Humanities and Ethics, Schools of Medicine and Law, University of Virginia, University of Virginia Health System, Box 800758, Charlottesville, VA, 22908, USA

    Lois Shepherd & Mary Faith Marshall

  2. Georgetown University School of Medicine, Reservoir Rd. NW, Washington, DC, 390020007, USA

    C. William Pike

  3. New York University School of Medicine, 550 1st Ave, New York, NY, 10016, USA

    Jesse B. Persily

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All authors contributed to the planning, research, writing, and editing of this paper.

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Correspondence to Lois Shepherd.

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Mary Faith Marshall provided ethics consultation relating to this case at the University of Virginia. The authors have no other financial or non-financial conflicts of interest or competing interests to disclose.

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Shepherd, L., Pike, C.W., Persily, J.B. et al. The Case of Hannah Capes: How Much Does Consciousness Matter?. Neuroethics 15, 14 (2022). https://doi.org/10.1007/s12152-022-09480-4

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