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Critical Interests and Sources of Familial Decision-Making Authority for Incapacitated Patients

Published online by Cambridge University Press:  01 January 2021

James Lindemann Nelson
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Extract

How ought we to understand the sources and limits of the authority of family members to make health care decisions for their decisionally incapacitated relatives? This question is becoming increasingly crucial as the population ages and the power of medical technology waxes. It is also becoming increasingly contested, as faith in advance directives shows signs of waning, and the moral complexities of intimate relationship become more theoretically patent.

This last point—the newly visible moral richness of intimate relationship—provides this paper with its field. I am interested in probing the images of the relationship between self and other, particularly self and intimate other, that seem presupposed by some leading attempts to determine the basis for proxy decision-making authority, and what constraints it must observe. In the light of both recent work in the philosophy of mind and considerations closer to common experience, the reigning images seem too slight to support the weight of current practices and beliefs about proxy authority; supplanting them with images more faithful to our experience will have implications for our practice with proxies.

Type
Article
Information
Journal of Law, Medicine & Ethics , Volume 23 , Issue 2 , Summer 1995 , pp. 143 - 148
Copyright
Copyright © American Society of Law, Medicine and Ethics 1995

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References

I refer here to the evidence that the use of advance directives remains restricted to a relatively small set of the population, as well as to studies indicating that proxies are poor at replicating patient choice, that patients often want their caregivers to have wide latitude in interpreting directives, and that directives may have little impact on patient treatment. For a broad based discussion, see the articles comprising “Advanced Care Planning: Priorities for Ethical and Empirical Research,” Hastings Center Report, 24, no. 6, supp. (1994).Google Scholar
See, as a sampler, Williams, Bernard, “Persons, Character and Morality,” in his Moral Luck (Cambridge: Cambridge University Press, 1981): 2–20; Blustein, Jeffrey, Care and Commitment (Oxford: Oxford University Press, 1991); Hardwig, John, “What About the Family?,” Hastings Center Report, 20, no. 2 (1990): 5–10; and Scheman, Naomi, “Individualism and the Objects of Psychology,” in Harding, Sandra Hintikka, Merrill B., eds., Discovering Reality (Amsterdam: Reidel, 1983): 225–44.CrossRefGoogle Scholar
Taylor, Charles, Sources of the Self: The Making of Modern Identity (Cambridge: Harvard University Press, 1989). See especially chapter 9, “Locke's Punctual Self.” My use of the idea differs slightly from Taylor's.Google Scholar
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This has been an important theme in a good deal of Rebecca Dresser's work. A recent statement occurs in her “Missing Persons: Legal Perceptions of Incompetent Patients,” Rutgers Law Review, 46, no. 2 (1994): 609–719. See also her “Dworkin on Dementia: Elegant Theory, Questionable Policy,” Hastings Center Report, forthcoming.Google Scholar
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The locus classicus is Derek Parfit's Reasons and Persons (Oxford: Oxford University Press, 1984). For further discussion of this point, see Nelson, James Lindemann, “Dementia and Advance Decision Making: Who's Choosing for Whom?,” Alzheimer Disease and Related Disorders, 8 (1994): 3–7.Google Scholar
Dresser (forthcoming), supra note 9, at MS 10–18.Google Scholar
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For a clear and useful overview of this position, see Burge's, Tyler “Philosophy of Language and Mind,” Philosophical Review, 101 (1992): 3–51.Google Scholar
Bruce Jennings has suggested that, in this and in the following “Jehovah's Witness” versions of Margo's story, I have misrepresented the structure of doctrinal formation and dissemination of that religious body. I realize that I cast a rather “High Church” tone on these narratives, which may be foreign to Witness tradition. However, the philosophical point seems to me to hold, nonetheless.Google Scholar