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Further Reflections: Surrogate Decisionmaking When Significant Mental Capacities are Retained

A Response to: Precedent Autonomy and Surrogate Decision-Making After Severe Brain Injury by MacKenzie Graham, Cambridge Quarterly of Healthcare Ethics (CQ 29 (4))

Published online by Cambridge University Press:  29 December 2020

JENNIFER HAWKINS
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Abstract

Mackenzie Graham has made an important contribution to the literature on decisionmaking for patients with disorders of consciousness. He argues, and I agree, that decisions for unresponsive patients who are known to retain some degree of covert awareness ought to focus on current interests, since such patients likely retain the kinds of mental capacities that in ordinary life command our current respect and attention. If he is right, then it is not appropriate to make decisions for such patients by appealing to the values they had in the past, either the values expressed in an advance directive or the values recalled by a surrogate. There are two things I wish to add to the discussion. My first point is somewhat critical, for although I agree with his general conclusion about how, ideally, such decisions should be approached, I remain skeptical about whether his conclusion offers decisionmakers real practical help. The problem with these cases is that the evidence we have about the nature of the patient’s current interests is minimal or nonexistent. However—and this is important—Graham’s conclusion will be extremely relevant if in the future, our ability to communicate with such patients improves, as I hope it will. This leads to my second point. Graham’s conclusion illustrates a more general problem with our standard framework for decisionmaking for previously competent patients, a problem that has not been adequately recognized. So, in what follows, I explain the problem I see and offer some brief thoughts about solutions.

Type
Responses and Dialogue
Information
Cambridge Quarterly of Healthcare Ethics , Volume 30 , Issue 1 , January 2021 , pp. 192 - 198
Copyright
© The Author(s), 2020. Published by Cambridge University Press

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References

Notes

1. Graham, M. Precedent autonomy and surrogate decision-making after severe brain injury. Cambridge Quarterly of Healthcare Ethics 2020; 29(4):511–526.CrossRefGoogle ScholarPubMed

2. Monti, M, Vanhaudenhuyse, A, Coleman, MR, Boly, M, Pickard, JD, Tshibanda, L, et al. Willful modulation of brain activity in disorders of consciousness. New England Journal of Medicine 2010;362:579–89.CrossRefGoogle ScholarPubMed

3. Cruse, D, Chennu, S, Chatelle, C, Bekinschtein, TA, Fernandez-Espejo, D, Pickard, JD, et al. Bedside detection of awareness in the vegetative state: A cohort study. The Lancet 2011;378(9809):2088–94.CrossRefGoogle ScholarPubMed

4. Kondziella, D, Friberg, CK, Frokjaer, VG, Fabricius, M, Moller, K. Preserved consciousness in vegetative and minimally conscious states: Systematic review and meta-analysis. Journal of Neurology, Neurosurgery, and Psychiatry. 2016;87(5):485–92.CrossRefGoogle ScholarPubMed

5. Schiff, ND. Cognitive motor dissociation following severe brain injuries. JAMA Neurology 2015;72(12):1413–5.CrossRefGoogle ScholarPubMed

6. Owen, AM, Coleman, MR, Boly, M, Davis, MH, Laureys, S, Pickard, JD. Detecting awareness in the vegetative state. Science 2006;313(5792):1402.CrossRefGoogle ScholarPubMed

7. See note 2, Monti et al. 2010, at 579–89.

8. See note 4, Kondziella et al. 2016, at 485–92.

9. Fernandez-Espejo, D, Owen, AM. Detecting awareness after severe brain injury. Nature Reviews Neuroscience 2013;14(11):801–9.CrossRefGoogle ScholarPubMed

10. Naci, L, Cusack, R, Anello, M, Owen, AM. A common neural code for similar conscious experiences in different individuals. Proceedings of the National Academy of Science USA 2014;111(39):14277–82.CrossRefGoogle ScholarPubMed

11. Graham, M, Naci, L, Owen, AM, Weijer, C. Covert narrative capacity: Mental life in patients thought to lack consciousness. Annals of Clinical and Translational Neurology 2017;4(1):61–70.Google Scholar

12. See note 9, Fernandez-Espejo, Owen 2013, at 801–809.

13. Hawkins, J. What is good for them? Best interests and severe disorders of consciousness. In: Sinnott-Armstrong, W, ed. Finding Consciousness: The Neuroscience, Ethics, and Law of Severe Brain Damage Oxford: Oxford University Press; 2016, at 180–200.CrossRefGoogle Scholar

14. Albrecht, GL, Devlieger, PJ. The disability paradox: High quality of life against the odds. Social Science and Medicine 1999;48:977–88.CrossRefGoogle Scholar

15. Ubel, P, Loewwnstein, G, Jepson, C. Whose quality of life? A commentary exploring the discrepancies between health state evaluations of patients and the general public. Quality of Life Research 2003;12:599–607.CrossRefGoogle ScholarPubMed

16. Teo, AR, Choi, H, Valenstein, M. Social relationships and depression: Ten-year follow-up from a nationally representative study. PLoS One. 2013;8(4):e62396.CrossRefGoogle ScholarPubMed

17. Rubenstein, LM, Alloy, LB, Abramson, LY. Perceived control and depression: Forty years of research. In: Reich, JW, Infurna, FJ, eds. Perceived Control: Theory, Research, and Practice in the First 50 Years. New York: Oxford University Press; 2017, at 229–52.Google Scholar

18. Hawkins, J, Charland, LC. Decision-making capacity. In: Zalta, EN, ed. The Stanford Encyclopedia of Philosophy (Fall 2020 edition). forthcoming. https://plato.stanford.edu/entries/decision-capacity/. Throughout, I treat “decisionmaking capacity” (or “capacity”) and “competence” as equivalent ways to talk about the same thing. Not all authors do so, but the common view that one term is clinical and the other legal is not really helpful for a variety of reasons. To give just one example, in the United Kingdom, “capacity” is often said to be a legal term whereas the same is said about “competence” in the United States.Google Scholar

19. It is important to distinguish between local and global incompetence/incapacity. Most ethicists accept now that decisionmaking capacity should be assessed on a decision-by-decision basis, such that a patient might in principle be deemed incompetent to make one decision but found competent to make others. A patient like this has local incompetence. However, some patients are so seriously impaired that they are really unable to make any medical decisions for themselves. These patients are said to be globally incompetent. Although Dworkin is not nearly as clear about this as he should be, most of the time advance directives are assumed to come into play once a patient is globally incompetent. See Note 17, Hawkins, Charland 2020.

20. Dworkin, R. Life’s Dominion: An Argument about Abortion and Euthanasia. New York: Viking; 1994.Google Scholar

21. Interestingly, Dworkin also defended a view of best interests according to which current interests of an incompetent patient are determined by past wishes. If one holds this view then, even if one grants that interests should guide us here (as opposed to respect for past competent decisions), this will not make a difference to how one proceeds. Past values of the patient will still be most important. I have argued against this view in Hawkins, J. Well-being, time and dementia. Ethics 2014;124:507–42.CrossRefGoogle Scholar

22. See note 20, Dworkin 1994, at 230.

23. See note 20, Dworkin 1994, at 230–1.

24. Jaworska, A. Respecting the margins of agency: Alzheimer’s patients and the capacity to value. Philosophy and Public Affairs 1999;28(2):105–38.CrossRefGoogle Scholar

25. See note 24, Jaworska 1999, at 135.

26. See note 24, Jaworska 1999, at 117–8.

27. See note 24, Jaworska 1999, at 130.

28. See note 20, Dworkin 1994, at 222.

29. See note 20, Dworkin 1994, at 223.

30. See note 20, Dworkin 1994, at 224.