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Perception of Value and the Minimally Conscious State

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Abstract

The “disability paradox” is the idea that for those who become severely disabled, their own quality of life (QoL) assessment remains at or slightly below the QoL assessments of normal controls. This is a source of skepticism regarding third-person QoL judgments of the disabled. I argue here that this skepticism applies as well to those who are in the minimally conscious state (MCS). For rather simple means of sustaining an MCS patient’s life (for example, tube feeding), the cost of being wrong that the patient would not want further support is high. Pair this cost with the reason to be skeptical of third-person judgments, and my argument suggests not withholding food and water from MCS patients.

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Notes

  1. The epistemology literature has blossomed in regard to whether there is a pragmatic aspect of justification or knowledge. See Fantl and McGrath (2009), and Stanley (2005). With application to ethical cases, see Moller (2011) and Lockhart (2000).

  2. See Meilaender (1984).

  3. There is another dyad of claims which are possible but I am not addressing here. MCS patients could, we do not know for certain, retain decision-making capacities but demonstrating those capacities to us would remain compromised. So, it is possible that MCS patients may refuse, or not refuse, tube feeding in their current state. Even so, given our justified skepticism about their mental states, it would be careless to act simply as if the patient currently refuses further tube feeding even if it turns out, unknowable to us, that they refuse tube feeding.

  4. I thank an anonymous reviewer for making this point.

  5. See Goering (2008) for a good response to those who wish to contest the veracity of these QoL judgments by the disabled.

  6. Michael Wreen is entirely correct when he says, “a clear-thinking and rational person…realizes that, however certain he may be of his values and desires now, they could change radically under desperate, life-threatening circumstances, and some provision should be made for the possibility of such a change” (2004, p. 328).

  7. For a related argument see Wall (2002).

  8. Beauchamp and Childress appear to hold such a view. “These arguments [for what counts as wrongdoing] suggest that causing a person’s death is morally wrong, when it is wrong, because an unauthorized intervention thwarted or set back a person’s interests” (2001, p. 148).

  9. I’ll assume that they cannot, but I have my doubts about PVS patients whose brain insult was traumatic. See Owen (2013).

  10. I phrased (Severe) in terms of a “sufficient reason” to withhold ANH. To dodge a potential “you-too” objection, my argument points out that simply citing the MCS state as a putative reason to withhold ANH is not a reason at all let alone a sufficient one. (See my reply to objection 1). And biased reasons, as with the disability bias, are clearly not sufficient reasons.

  11. I would like to thank two anonymous reviewers for very helpful comments on previous drafts of this paper and also to Tom Zabiega MD. who graciously read a previous draft.

References

  • Ackerman, T. F. (2010). Why doctors should intervene. In L. Vaughn (Ed.), Bioethics: Principles, issues, and cases (pp. 79–83). New York: Oxford University Press.

    Google Scholar 

  • Bach, J. R. (2003). Threats to “informed” advance directives for the severely physically challenged? Archives of Physical Medicine Rehabilitation, 84(Supplement 2), S23–S28.

    Article  Google Scholar 

  • Beauchamp, T. L. & Childress, J. F. (2001). Principles of biomedical ethics (5th ed.). New York: Oxford University Press.

  • Bloom, A. D. (Ed.). (1991). The republic of Plato. New York: Basic Books.

    Google Scholar 

  • Brewer, T. (2009). The retrieval of ethics. Oxford: Oxford University Press.

  • Bruno, M. A., Bernheim, J. L., Ledoux, D., et al. (2011). A survey on self-assessed well-being in a cohort of chronic locked-in syndrome patients: Happy majority, miserable minority. BMJ Open, 1, e000039. doi:10.1136/bmjopen-2010-000039.

  • Conly, S. (2013). Against autonomy: Justifying coercive paternalism. New York: Cambridge University Press.

    Google Scholar 

  • Depaul, M. (1993). Balance and refinement: Beyond coherence methods of moral inquiry. London: Routledge.

    Google Scholar 

  • Doble, J. E., Haig, A. J., Anderson, C. & Katz, R. (2003). Impairment, activity, participation, life satisfaction, and survival in persons with locked-in syndrome for over a decade: Follow-up on a previously reported cohort. The Journal of Head Trauma Rehabilitation, 18(5), 435–444.

  • Fantl, J. & McGrath, M. (2009). Knowledge in an uncertain world. New York: Oxford University Press.

  • Gaita, R. (2004). Good and evil: An absolute conception (2nd ed.). New York: Routledge.

  • Gawande, A. (2010). Whose body is it anyway? In L. Vaughn (Ed.), Bioethics: Principles, issues, and cases (pp. 88–97). New York: Oxford University Press.

    Google Scholar 

  • Georgiopoulos, M., Katsakiori, P., Kefalopoulou, Z., Ellul, J., Chroni, E., Constantoyannis, C., et al. (2010). Vegetative state and minimally conscious state: A review of the therapeutic interventions. Stereotactic Functional Neurosurgery, 88, 199–207.

    Article  Google Scholar 

  • Gerhart, K., Koziol-McLain, J., Lowenstein, S. R. & Whiteneck, G. G. (1994). Quality of life following spinal cord injury: Knowledge and attitudes of emergency care providers. Annals of Emergency Medicine, 23(4), 807–812.

    Article  Google Scholar 

  • Ghorbel, S. (2002). Statut fonctionnel et qualité de vie chez le locked-in syndrome a domicile. DEA Motricite Humaine et Handicap, Laboratory of Biostatistics, Epidemiology and Clinical Research. Universite Jean Monnet Saint-Etienne, Montpellier.

  • Giacino, J. T., Fins, J. J., Machado, A. & Schiff, N. D. (2012). Central thalamic deep brain stimulation to promote recovery from chronic posttraumatic minimally conscious state: Challenges and opportunities. Neuromodulation, 15, 339–349.

  • Giacino, J. T., Ashwal, S., Childs, N., et al. (2002). The minimally conscious state: Definition and diagnostic criteria. Neurology, 58, 349–353.

  • Glannon, W. (2013). Burdens of ANH outweigh benefits in the minimally conscious state. Journal of Medical Ethics, 39(9), 551–552.

    Article  Google Scholar 

  • Goering, S. (2008). ‘You say you’re happy, but...’: Contested quality of life judgments in bioethics and disability studies. Journal of Bioethical Inquiry (5), 125–135.

  • Laureys, S., Pellas, F., van Eeckhout, P., et al. (2005a). The locked-in syndrome: What is it like to be conscious but paralyzed and voiceless? Progress in Brain Research, 150, 495–511. Reprinted in S. Laurey (Ed.), The boundaries of consciousness: Neurobiology and neuropathology. Amsterdam: Elsevier.

  • Laureys, S., Perrin, F., Schnakers, C., et al. (2005b). Residual cognitive function in comatose, vegetative and minimally conscious states. Current Opinion in Neurology, 18, 726–733.

    Article  Google Scholar 

  • Leon-Carrion, J., van Eeckhout, P. & Dominguez-Morales, M. R. (2002). The locked-in syndrome: A syndrome looking for a therapy. Brain Injury, 16, 555–569.

  • Lockhart, T. (2000). Moral uncertainty and its consequences. New York: Oxford University Press.

    Google Scholar 

  • Lulé, D., Pauli, S., Altintas, E., et al. (2012). Emotional adjustment in amyotrophic lateral sclerosis (ALS). Journal of Neurology, 259(2), 334–341.

    Article  Google Scholar 

  • Lulé, D., Zickler, C., Hacker, S., et al. (2009). Life can be worth living in locked-in syndrome. Progress in Brain Research, 177, 339–351.

  • McMahan, J. (2002). The ethics of killing: Problems at the margins of life. New York: Oxford University Press.

    Book  Google Scholar 

  • Meilaender, G. (1984). On removing food and water: Against the stream. The Hastings Center Report, 14(6), 11–13.

    Article  Google Scholar 

  • Moller, D. (2011). Abortion and moral risk. Philosophy, 86(3), 425–443.

    Article  Google Scholar 

  • Olson, E. T. (1997). The human animal: Personal identity without psychology. New York: Oxford University Press.

    Google Scholar 

  • Owen, A. (2013). Detecting consciousness: A unique role for neuroimaging. Annual Review of Psychology, 64, 109–133.

    Article  Google Scholar 

  • Plantinga, A. (1993). Warrant and proper function. New York: Oxford University Press.

    Book  Google Scholar 

  • Rudner, R. (1953). Scientist qua Scientist makes value judgments. Philosophy of Science, 20(1), 1–6.

    Article  Google Scholar 

  • Schiff, N. D., Rodriguez-Moreno, D., Kamal, A., et al. (2005). fMRI reveals large-scale network activation in minimally conscious patients. Neurology, 64, 514–523.

    Article  Google Scholar 

  • Snowdon, P. (2014). Persons, animals, and ourselves. New York: Oxford University Press.

    Book  Google Scholar 

  • Stanley, J. (2005). Knowledge and practical interests. New York: Oxford University Press.

    Book  Google Scholar 

  • Wall, S. (2002). Is public justification self-defeating? American Philosophical Quarterly, 39(4), 385–394.

    Google Scholar 

  • Weil, S. (1968). On science, necessity, and the love of God. New York: Oxford University Press.

  • Whyte, J., Katz, D., Long, D., et al. (2005). Predictors of outcome in prolonged posttraumatic disorders of consciousness and assessment of medication effects: A multicenter study. Archives of Physical Medicine Rehabilitation, 86, 453–462.

    Article  Google Scholar 

  • Wreen, M. J. (2004). Hypothetical autonomy and actual autonomy: Some problem cases involving advance directives. The Journal of Clinical Ethics, 15(4), 319–333.

    Google Scholar 

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  1. Philosophy Department, Villanova University, SAC 108, Villanova, PA, 19085, USA

    Stephen Napier

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Napier, S. Perception of Value and the Minimally Conscious State. HEC Forum 27, 265–286 (2015). https://doi.org/10.1007/s10730-015-9281-9

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