Abstract
Dementia has become a central problem of health care in modern societies. Currently, 47.5 million people worldwide have the disease, and it is projected that 75.6 million people will have it in 2030. Against this background, the question of the binding force of advance directives in dementia will be of growing importance in future years. Defenders of the view that dementia advance directives should be seen as binding often invoke the principle of precedent autonomy to support their view. According to this principle, it is the right of a competent individual to make decisions for a later time once competence has been lost. However, the paper criticizes this principle of precedent autonomy and argues that it cannot be upheld because there are some cases in which it is morally legitimate to act against the will of the competent patient that is expressed in an advance directive pertaining to a later life stage in which competence has been lost. First, the way for a criticism of the principle of precedent autonomy is paved by laying bare its fundamental premise, namely the “dominance thesis,” according to which critical interests dominate experiential interests in cases of conflict between these two kinds of interests. In a second step, various ways in which critical and experiential interests may relate to each other are distinguished, and it is argued that the dominance thesis holds true only with regard to some but not all of these constellations. In focusing on a specific scenario with regard to which the dominance thesis turns out to be false, the paper argues that in some cases of a conflict between critical and experiential interests the latter ones negate the normative authority of the former. Based on a rebuttal of two objections to this view, it is concluded that we should answer the normative question of whether advance directives in dementia should be seen as binding with a qualified “no.”
This is a preview of subscription content, log in via an institution to check access.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
Notes
- 1.
These figures draw on estimations of the World Health Organisation (2015). The Alzheimer᾽s Association (2015) provides detailed U.S.-related data on the prevalence of dementia. For its prevalence in the U.K., see the most recent annual report of the Alzheimer᾽s Society (2015). For a general overview on the prevalence of dementia, see Jennings (2015, 437).
- 2.
- 3.
The most prominent defenders of the principle of precedent autonomy are Rhoden (1990), Dworkin (1994, 218–241) (Chap. 8), Cantor (1992), Cantor (2005), Quante (2002, 268–295) (Chap. 7), Davis (2002), Davis (2004), Davis (2009), King (2007, 76–107) (Chap. 3). The most persistent critics of the principle of precedent autonomy are Rebecca Dresser and John Robertson; see Dresser (1984), Dresser (1986), Dresser (1994), Dresser (1995), Dresser and Robertson (1989), Robertson (1991); see also Buchanan and Brock (1990, 101–112). Instead of “precedent autonomy”, some authors use terms like “prospective autonomy”, “future-oriented autonomy” (Cantor 1992) or “prolonged autonomy” (Quante 2002, 268–295).
- 4.
- 5.
Dworkin (1994, 201).
- 6.
This clash does not necessarily imply that the demented patient is no longer identical with the competent person who issued the advance directive. In this paper, I do not enter the complicated debate on advance directives and the personal identity problem. For a detailed discussion of this problem, see, e.g., Buchanan (1988), Buchanan and Brock (1990, 152–189) (Chap. 3), DeGrazia (2005, 159–202) (Chap. 5).
- 7.
Most recently, Buller (2015, esp. 702), embraces this view.
- 8.
When talking about different stages of dementia, I refer to the “global deterioration scale for assessment of primary degenerative dementia” as developed by Reisberg et al. (1982). Reisberg et al. distinguish between the initial “forgetfulness phase”, in which the deficit is primarily subjective but verifiable, the intermediate “confusional phase”, in which the deficit is apparent to an objective observer, and the “late dementia phase”, in which the patient can no longer survive without assistance. The first phase comprises stages (1) (“no cognitive decline”) and (2) (“very mild cognitive decline”), the second stages (3) (“mild cognitive decline”) and (4) (“moderate cognitive decline”), the third stages (5) (“moderately severe cognitive decline”), (6) (“severe cognitive decline”) and (7) (“very severe cognitive decline”) of the disease.
- 9.
- 10.
For a defence of this claim, see also McMahan (2002, 497). Menzel and Steinbock write that critical interests still “exist […] even after one no longer experiences them” (2013, 489). Buchanan labels these interests “surviving interests” (1988, 287; see also Buchanan and Brock 1990, 162–164). According to Davis, interests can “survive” as long as it is nomologically possible for the interest holder to regain competence (2009, 367–371). To say that interests still “exist” after the death of the interest holder strikes me as counterintuitive. It would mean that we have no way of setting limits to the persistence of interests. Do we really want to say that Julius Caesar, anno 2015, still has an interest in not being murdered?
- 11.
- 12.
See Buller (2015, 702).
- 13.
- 14.
For presymptomatic testing of dementia by means of blood tests and biomarkers, see Davis (2014, esp. 547–548).
- 15.
- 16.
See Dworkin (1994, 220–229). The Margo-case and Dworkin’s normative assessment of the case have become a constant reference point in the literature on advance directives in dementia. It has elicited Dresser᾽s trenchant criticism (see, e.g., Dresser 1995); for further comments on the Margo-case, see, e.g., Jaworska (1999), McMahan (2002, 498–502), Sumner (2011, 108–117), Menzel and Steinbock (2013, 489–492), Beauchamp and Childress (2013, 228–229), Hawkins (2014, esp. 510–519).
- 17.
Dworkin (1994, 221).
- 18.
For the time being, I ignore the fact that in this case, the original set of critical interests is replaced not by another set of critical interests, but by experiential interests. I address this issue in Sect. 10.4, where I will argue that the answer to the question of whether critical interests lose their normative authority or not does not hinge on whether they are replaced by critical or by experiential interests.
- 19.
Pace, e.g., King (2007, 204–213). According to King, a revocation is the only way of invalidating an advance directive. This claim mirrors the rather loose use of the term “revocation” in the literature on advance directives. Often, the term is used in a very general sense to cover all forms of invalidation of an advance directive.
- 20.
Admittedly, whether the principle of autonomy requires the satisfaction of experiential interests or not is a contested issue. On a broadly Kantian model, one might argue that it is only interests that are based in reason, i.e. critical interests that express our autonomy and that are protected by the right to autonomy, whereas experiential interests based on pleasure or desire are not. However, the main idea of my argument does not hinge on a positive answer to the question of whether the principle of autonomy requires us to respect experiential interests or not. Even if the answer to this question is in the negative, the fact remains that the experiential interests of the demented patient are interests that—in the absence of compelling arguments to the contrary—deserve to be respected. One might plausibly argue that a cat᾽s interest not to be exposed to boiling water ought to be respected without invoking the principle of autonomy to ground this moral obligation. Analogously, as long as the principle of precedent autonomy turns out to be unpersuasive in conflict cases of the kind now under consideration, there is good reason to assume that the experiential interests of the demented patient, be their satisfaction required by the principle of autonomy or not, ought to be honored.
- 21.
See, e.g., King (2007, 204–213). King endorses the view that a valid revocation must exhibit a degree of autonomy similar to the one that is required to make the advance directive valid.
- 22.
In a similar vein, Buchanan and Brock defend a “sliding-scale account” of competence (1990, 17–86 [Chap. 1]). They argue that “no single standard of decision-making competence is adequate” (ibd., 52) and that “the standard of competence ought to vary in part with the expected harms or benefits to the patient of acting in accordance with the patient᾽s choice” (ibd., 51). As Beauchamp and Childress have noted, we should not take this claim to mean that competence itself varies in relation to risk, since risky decisions do not require more ability at decision making than less risky ones. Rather, the core idea of the “sliding-scale account” should be that the evidence for determining competence varies according to risk; see Beauchamp and Childress (2013, 119–120).
- 23.
- 24.
Sumner states this point very clearly: “It would be perverse to disregard my earlier directives simply because I am now in the very condition of incapacity I anticipated in recording them” (2011, 111).
- 25.
Feinberg (1986, 47–51).
- 26.
- 27.
This problem vitiates Davis᾽ attempt to base precedent autonomy on a “resolution preference”, i.e. an evaluative judgement that is formed in awareness of two conflicting preferences and that is either contemporary with the two conflicting preferences or, if these exist at different times, with one of them, typically the former one. (2004, 273–281, 2009, 365–367). According to Davis, a resolution preference expresses what a person wants, all things considered. Therefore, to respect his or her autonomy, we must respect his or her resolution preference. However, even resolution preferences may be subject to changes of mind; a person may come to abandon or to alter his or her resolution preference. Similar problems arise with King᾽s suggestion to incorporate an “antirevocation provision” in advance directives in order to protect the subject against involuntary revocations of his former will (King 2007, 204–213). This antirevocation condition, King suggests, should specify circumstances under which the apparent revocation of an advance directive should not be honored. But again, even the antirevocation provision is prone to changes of will and may therefore become invalid. For the problem of anticipated preference changes, see also Kleinig (1984, 57), who rightly states: “consent is not to be construed after the manner of an irrevocable contract but as an ongoing commitment that may be reassessed and given up” (57).
- 28.
This holds true especially in view of the fact that demented patients do have the capacity to value, as Jaworska (1999) has convincingly argued. Referring to Dworkin’s distinction between critical and experiential interests, Jaworska points out that this distinction is too coarse and needs to be replaced by a more fine-grained one. She categorizes the valuations of demented patients as critical interests, thereby introducing a sense of “critical interest” that is different from the one that Dworkin draws upon. Whether we follow her in doing so or not seems to me a question of minor terminological importance. Jaworska’s crucial insight is that the preferences of demented patients are distinct from mere desires, that they may, at least in the first stages of dementia, still be stable and that, although they do not imply grasp of one’s life as a whole, they are expressive of valuations. As valuing involves reflection, the capacity to value, so Jaworska argues, shows that demented patients have not lost their autonomy. For Jaworska’s critique of Dworkin’s distinction between critical and experiential interests, see also Menzel and Steinbock (2013, 490–492).
- 29.
Dworkin, though not explicitly, embraces this view when he grounds the dominance thesis in considerations concerning human dignity: “I have been arguing that we not only have, in common with all sensate creatures, experiential interests in the quality of our future experiences but also critical interests in the character and value of our lives as a whole. These critical interests are connected, as I said, to our convictions about the intrinsic value—the sanctity or inviolability—of our own lives. […] Dignity is a central aspect of […] the intrinsic importance of human life” (1994, 235–236).
- 30.
Quante defends this view: “To lead one’s life as a person means to identify oneself, be it in a positive or in a negative way, with one’s future, one’s future experiential interests included. If a culture attaches central value to leading one’s life as a person, there is a strong reason for acknowledging and respecting those valuations of a person that he or she expresses in an advance directive as an exercise of his or her personal autonomy” (2002, 286; transl. by author).
- 31.
See the quotation from Quante (2002) in the preceding footnote, which allows for this interpretation as well.
- 32.
See, e.g., Hare (1952, 1–55, 79–93) (Chaps. 1–3, 5). It would be beyond the scope of this paper to go into the details of the discussion of metaethical naturalism. I simply take it for granted that metaethical naturalism cannot be consistently defended.
- 33.
For a classical critique of the “speciecism” that is involved here, see Singer (2011, 48–70) (Chap. 3).
- 34.
See von Wright (1963, 155–157). According to Moore᾽s influential analysis of the relation between “good” and “ought”, normative concepts like “ought” and “duty” can be analyzed in terms of “good”, whereas “good” itself, being a simple concept, cannot be analyzed in terms of normative concepts; see Moore (1993, 76–78, 196–198) (Chap. 1, § 17, Chap. 5, § 89).
- 35.
A similar point is made by McMahan (2002, 497–498), Menzel and Steinbock (2013, 492–493), Menzel and Chandler-Cramer (2014, 24–29). Rhoden neglects this important point. She contends that rejecting precedent autonomy implies that the competent patient’s right to refuse treatment would be upheld only as long as she remains competent. “Taken to an extreme, this could mean that a Jehovah’s Witness could refuse a blood transfusion until he “bled out” and became incompetent, after which he could be transfused” (1990, 857). However, this counterintuitive consequence follows only if the rejection of the principle of precedent autonomy is extended to no-conflict cases, which it need not be.
- 36.
E.g., McMahan’s sagacious defence of the view that the competent person’s preferences ought to be accorded more weight than those of the demented patient is independent of the principle of precedent autonomy. McMahan construes conflict cases as conflicts between two distinct parts of a life, namely between the earlier good of the competent self and that of the later incompetent self. While it may be in the best interest of the demented patient to live, ignoring the directive may retroactively diminish the value of the life prior to the onset of dementia. McMahan argues that physicians should give priority to the earlier part of the life because it is overwhelmingly the dominant part of the life as a whole (2002, 498–503). For a detailed discussion of McMahan’s position, see Hawkins (2014, 514–515).
- 37.
In the same spirit, Dresser and Robertson object that it is fundamentally dishonest to cloak those value-judgements that underlie the subordination of the demented patient’s interests to those of the competent person with labels as self-determination and dignity; see Dresser (1986, 389–390), Dresser (1994, 647–649), Dresser and Robertson (1989, 242–243), Robertson (1991, 9).
References
Alzheimer᾽s Association. 2015. Alzheimer᾽s Disease Facts and Figures. Alzheimer’s & Dementia 2015. https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=412. Accessed October 11, 2015.
Alzheimer᾽s Society. 2015. Dementia 2014 report. Statistics. https://www.alz.co.uk/research/statistics. Accessed October 11, 2015.
Beauchamp, Tom, and Ruth Faden. 1986. A History and Theory of Informed Consent. Oxford: Oxford University Press.
Beauchamp, Tom, and James Childress. 2013. Principles of Biomedical Ethics, 7th ed. Oxford: Oxford University Press.
Buchanan, Allen. 1988. Advance Directives and the Personal Identity Problem. Philosophy & Public Affairs 17: 277–302.
Buchanan, Allen, and Dan Brock. 1990. Deciding for Others. The Ethics of Surrogate Decision Making. Cambridge: Cambridge University Press.
Buller, Tom. 2015. Advance Consent, Critical Interests and Dementia Research. Journal of Medical Ethics 41: 701–707.
Cantor, Norman. 1992. Prospective Autonomy: On the Limits of Shaping One᾽s Postcompetent Medical Fate. Journal of Contemporary Health Law & Policy 8: 13–48.
Cantor, Norman. 2005. Making Medical Decisions for the Profoundly Disabled. Boston, MA: MIT Press.
Davis, Dena. 2014. Alzheimer᾽s Disease and Pre-Emptive Suicide. Journal of Medical Ethics 40: 543–549.
Davis, John. 2002. The Concept of Precedent Autonomy. Bioethics 16: 114–133.
Davis, John. 2004. Precedent Autonomy and Subsequent Consent. Ethical Theory and Moral Practice 7: 267–291.
Davis, John. 2009. Precedent Autonomy, Advance Directives, and End-of-Life Care. In Oxford Handbook of Bioethics, ed. Bonnie Steinbock, 349–374. Oxford: Oxford University Press.
DeGrazia, David. 2005. Human Identity and Bioethics. Cambridge: Cambridge University Press.
Dresser, Rebecca. 1984. Bound to Treatment: The Ulysses Contract. The Hastings Center Report 14: 13–16.
Dresser, Rebecca. 1986. Life, Death, and Incompetent Patients: Conceptual Infirmities and Hidden Values in the Law. Arizona Law Review 28: 373–405.
Dresser, Rebecca. 1994. Missing Persons: Legal Perceptions of Incompetent Patients. Rutgers Law Review 46: 609–719.
Dresser, Rebecca. 1995. Dworkin on Dementia: Elegant Theory, Questionable Policy. The Hastings Center Report 25: 32–38.
Dresser, Rebecca, and John Robertson. 1989. Quality of Life and Non-Treatment Decisions for Incompetent Patients: A Critique of the Orthodox Approach. Law, Medicine & Health Care 17: 234–244.
Dworkin, Ronald. 1994. Life᾽s Dominion. An Argument about Abortion, Euthanasia, and Individual Freedom. New York: Vintage.
Elster, Jon. 2010. Ulysses Unbound. Studies in Rationality, Precommitment, and Constraints. Cambridge: Cambridge University Press.
Feinberg, Joel. 1986. Harm to Self (The Moral Limits of the Criminal Law III). Oxford: Oxford University Press.
Hallich, Oliver. 2011. Selbstbindungen und medizinischer Paternalismus: Zum normativen Status von “Odysseus-Anweisungen.” Zeitschrift für philosophische Forschung 65: 151–172.
Hare, Richard. 1952. The Language of Morals. Oxford: Oxford University Press.
Hawkins, Jennifer. 2014. Well-Being, Time, and Dementia. Ethics 124: 507–542.
Jaworska, Agnieszka. 1999. Respecting the Margins of Agency: Alzheimer᾽s Patients and the Capacity to Value. Philosophy & Public Affairs 28: 105–138.
Jennings, Bruce. 2015. Alzheimer᾽s Disease: Quality of Life and the Goals of Care. In The Routledge Companion to Bioethics, ed. John Arras, Elizabeth Fenton, and Rebecca Kukla, 437–448. New York, London: Routledge.
King, Nancy. 2007. Making Sense of Advance Directives. Washington: Georgetown University Press.
Kleinig, John. 1984. Paternalism. New Jersey: Rowman & Allanheld.
McMahan, Jeff. 2002. The Ethics of Killing. Problems at the Margins of Life. Oxford: Oxford University Press.
Menzel, Paul, and Bonnie Steinbock. 2013. Advance Directives, Dementia, and Physician-Assisted Death. Journal of Law, Medicine and Ethics 41: 484–500.
Menzel, Paul, and Colette Chandler-Cramer. 2014. Advance Directives, Dementia, and Withholding Food and Water by Mouth. The Hastings Center Report 44: 23–37.
Moore, George Edward. 1993. Principia Ethica. Revised Edition. With the Preface to the Second Edition and Other Papers. Cambridge University Press: Cambridge.
Quante, Michael. 2002. Personales Leben und menschlicher Tod. Personale Identität als Prinzip der biomedizinischen Ethik. Suhrkamp: Frankfurt a.M.
Reisberg, Barry, Steven Ferris, Mony de Leon, and Thomas Crook. 1982. The Global Deterioration Scale for Assessment of Primary Degenerative Dementia. American Journal of Psychiatry 139: 1136–1139.
Rhoden, Nancy. 1990. The Limits of Legal Objectivity. North Carolina Law Review 68: 845–865.
Robertson, John. 1991. Second Thoughts on Living Wills. The Hastings Center Report 21: 6–9.
Singer, Peter. 2011. Practical Ethics, 3rd ed. Cambridge: Cambridge University Press.
Sumner, Leonard Wayne. 2011. Assisted Death. A Study in Ethics and Law. Oxford: Oxford University Press.
von Wright, Georg Henrik. 1963. The Varieties of Goodness. Bristol: Thoemmes Press.
World Health Organisation. 2015. 10 Facts on Dementia. https://www.who.int/features/factfiles/dementia/en/. Accessed October 11, 2015.
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2020 Springer Nature Switzerland AG
About this chapter
Cite this chapter
Hallich, O. (2020). Prolonged Autonomy? The Principle of Precedent Autonomy and the Binding Force of Advance Directives in Dementia. In: Kühler, M., Mitrović, V.L. (eds) Theories of the Self and Autonomy in Medical Ethics. The International Library of Bioethics, vol 83. Springer, Cham. https://doi.org/10.1007/978-3-030-56703-3_10
Download citation
DOI: https://doi.org/10.1007/978-3-030-56703-3_10
Published:
Publisher Name: Springer, Cham
Print ISBN: 978-3-030-56702-6
Online ISBN: 978-3-030-56703-3
eBook Packages: Religion and PhilosophyPhilosophy and Religion (R0)