Respecting the margins of agency: Alzheimer's patients and the capacity to value

Philosophy and Public Affairs

Volumn 28, Issue 2, 1999, Pages 105-138

  Jaworska, Agnieszka ^a  

^a NONE

Author keywords

[No Author keywords available]

Indexed keywords

ANALYTICAL APPROACH; ARTICLE; BRAIN DISEASE; BRAIN INJURY; CASE REPORT; DECISION MAKING; DEMENTIA; FREEDOM; HUMAN; INDIVIDUALITY; LIVING WILL; MENTAL CAPACITY; MENTAL HEALTH THERAPIES; PATIENT CARE; PERSONAL AUTONOMY; PERSONHOOD; PROFESSIONAL PATIENT RELATIONSHIP; QUALITY OF LIFE; SELF CONCEPT; SOCIAL PSYCHOLOGY;

ANALYTICAL APPROACH; MENTAL HEALTH THERAPIES; PROFESSIONAL PATIENT RELATIONSHIP;

ADVANCE DIRECTIVES; BRAIN DISEASES; BRAIN INJURIES; DECISION MAKING; DEMENTIA; FREEDOM; HUMANS; INDIVIDUALITY; MENTAL COMPETENCY; PATIENT CARE; PERSONAL AUTONOMY; PERSONHOOD; QUALITY OF LIFE; SELF CONCEPT; SOCIAL VALUES;

EID: 0033085396     PISSN: 00483915     EISSN: 10884963     Source Type: Journal    
DOI: 10.1111/j.1088-4963.1999.00105.x     Document Type: Article

References (57)

1. Quoted in Oliver Sacks, The Man Who Mistook His Wife for a Hat and Other Clinical Tales (New York: Summit Books, 1985), p. 32.
2. These three cases were reported by family members and a doctor. Throughout the article, I use fictitious names in cases not drawn from published literature. Also, to protect privacy of the patients, I do not list the names of my sources, but I would like to thank them for their generous help.
3. See, for example, Rebecca Dresser, "Life, Death, and Incompetent Patients: Conceptual Infirmities and Hidden Values in the Law," Arizona Law Review 23, no. 3 (1986): 373-405.
4. Ronald Dworkin, Life's Dominion (New York: Alfred A. Knopf, 1993), pp. 218-37.
5. Dworkin's analysis of these cases may differ depending on the degree to which the patient's earlier wishes involve an explicit decision about what should be done in the circumstances at hand.
6. I develop more fully the account of moral psychology underlying this approach in "Rescuing Oblomov: A Search for Convincing Justifications of Value" (Ph.D. diss., Harvard University, 1997).
7. Given this focus, I will not discuss other possible criticisms of Dworkin's arguments.
8. The exact relevance of a person's opinions about the good to her critical interests depends on the merits of these opinions. I will discuss this complication only to the extent that it is relevant to my arguments.
9. I leave out the case where the person changes her mind about her critical interest - the old critical interest does seem to become truly obsolete then.
10. Dworkin, Life's Dominion, p. 230.
11. Dworkin, Life's Dominion, Ibid., pp. 201-2.
12. Dworkin, Life's Dominion, Ibid., p. 202.
13. Sometimes the term "desire" is used to cover all possible kinds of pro-attitudes. On this usage, any value would also count as a species of desire. I do not favor this usage, but it would still allow for the distinction I am drawing here, the distinction between values and "mere desires," that is, desires that neither are also values nor are accompanied by parallel values.
14. In the case of some (often less central) values, one may anticipate a gradual transformation and loss of a value without thinking it would be a mistake. This is not a counterexample to my characterization of valuing, because my claim concerns our attitudes to our present espousal of a value: It is part of valuing something that you would view the possibility of not caring about it here and now as an impoverishment, loss, or mistake. Imagining a future without the alleged value is a good test for this in many cases, but it does not work in every case, because some values are dependent on context and are important only at a specific time in one's life.
15. Values overlap significantly with second-order volitions which, in Harry Frankfurt's familiar account, distinguish a person from a mere wanton ("Freedom of the Will and the Concept of a Person," in The Importance of What We Care About [Cambridge: Cambridge University Press, 1988], p. 16).
16. A value would almost always involve a second-order volition - insofar as a person considers a way of acting correct, she would want her desire to act in this way to effectively move her to action. But not all second-order volitions involve values - one could want a certain desire to effectively motivate one's actions without the conviction that it would be correct to act in this way. Frankfurt himself suggests this distinction between second-order volitions and values (The Importance of What We Care About ibid., p. 16, note 6). The capacity to value is a somewhat more demanding capacity than the capacity for second-order volition, and thus, presumably, it is easier to lose in Alzheimer's.
17. Steven R. Sabat, "Voices of Alzheimer's Disease Sufferers: A Call for Treatment Based on Personhood," The Journal of Clinical Ethics 9, no. 1 (spring 1998): 46.
18. Steven R. Sabat, "Voices of Alzheimer's Disease Sufferers: A Call for Treatment Based on Personhood," The Journal of Clinical Ethics 9, no. 1 (1998): 46. Ibid.
19. Steven R. Sabat, "Voices of Alzheimer's Disease Sufferers: A Call for Treatment Based on Personhood," The Journal of Clinical Ethics 9, no. 1 (1998): 46. Ibid.
20. Steven R. Sabat, The Journal of Clinical Ethics Ibid., 41.
21. Steven R. Sabat, The Journal of Clinical Ethics 41. Ibid.
22. Steven R. Sabat, The Journal of Clinical Ethics Ibid., 41-42. Emphasis added.
23. Steven R. Sabat, The Journal of Clinical Ethics Ibid., 41. Emphasis added.
24. My understanding of the concept of practical identity derives from Christine Korsgaard, The Sources of Normativity (Cambridge: Cambridge University Press, 1996), esp. pp. 90-130.
25. Nothing I say here should be taken to imply that we ought simply to allow Mr. Burke to realize this ideal. At this stage, I only intend to show that Mr. Burke is still a valuer. I take up the question of how such valuers ought to be treated, depending on the details of the case, in Section IV.
26. See Ann Davidson, Alzheimer's, a Love Story: One Year in My Husband's Journey (Secaucus, N.J.: Carol Publishing Group, 1997), for a case of this sort.
27. I would like to thank Marion Danis for prompting me to investigate the neuroanatomical evidence for my claims.
28. Changiz Geula, "Abnormalities of Neural Circuitry in Alzheimer's Disease: Hippocampus and Cortical Cholinergic Innervation," Neurology 51, suppl. 1 (July 1998): S23.
29. Larry R. Squire and Stuart Zola-Morgan, "The Medial Temporal Lobe Memory System," Science 253 (September 1991): 1384-85.
30. Larry R. Squire and Stuart Zola-Morgan, "Memory: Brain Systems and Behavior," Trends in Neurosciences 11, no. 4 (1988): 174.
31. "The Medial Temporal Lobe Memory System," p. 1384.
32. Paul A. Young and Paul H. Young, Basic Clinical Neuroanatomy (Baltimore: Williams and Wilkins, 1997), p. 204.
33. For an extensive discussion see Antonio R. Damasio, Descartes' Error: Emotion, Reason, and the Human Brain (New York: G. P. Putnam's Sons, 1994).
34. For an extensive discussion see Antonio R. Damasio, Descartes' Error: Emotion, Reason, and the Human Brain Ibid., pp. 34-51.
35. For an extensive discussion see Antonio R. Damasio, Descartes' Error: Emotion, Reason, and the Human Brain Ibid., pp. 46-49.
36. For an extensive discussion see Antonio R. Damasio, Descartes' Error: Emotion, Reason, and the Human Brain Ibid., p. 49.
37. For an extensive discussion see Antonio R. Damasio, Descartes' Error: Emotion, Reason, and the Human Brain Ibid., p. 51.
38. It may also be that Elliot's desires were severely diminished. But this only shows that both desiring and valuing involve emotions. This point does not interfere with the arguments in this section.
39. For an elaboration of the relationship between emotional engagement, critical evaluation, and the person's conviction that an object of value is correct, see my "Rescuing Oblomov," pp. 179-99.
40. Liduin Souren and Emile Franssen, Broken Connections: Alzheimer's Disease, Part I, trans. R.M.J. van der Wilden-Fall (Lisse: Swets and Zeitlinger, 1994), p. 52.
41. For a summary of what regions are at issue, see Damasio, Descartes' Error, pp. 70-71.
42. H. Braak and E. Braak, "Staging of Alzheimer's Disease-Related Neurofibrillary Changes," Neurobiology of Aging 16, no. 3 (May 1995): 274-75.
43. Since Alzheimer's patients are unlikely to develop any new values, the values that they still espouse are typically traceable to their previous values. This is certainly true in our examples: Mrs. Rogoff's interest in being a good cook, Mr. Burke's interest in cars. Mrs. D.'s interest in helping her fellow man, and Dr. B.'s interest in contributing to science are all continuous with these patients' interests from the predementia period. It is tempting to view the current attitudes of these patients as values simply by virtue of the fact that they are traceable to the patients' former critical interests. But on my view, continuity of this sort is not sufficient to make an attitude of an Alzheimer's patient a value. The current attitude itself must exhibit the features essential to valuing that I outlined earlier in this section. I have argued that the patients in my examples meet this more demanding re-quirement. This point notwithstanding, continuity of a demented patient's conviction about the good with one held previously could serve to confirm that the conviction in question is indeed a value. In addition, continuity of this sort indicates the authenticity of the value - it shows that the current value is not some random product of the disease process, but that it is anchored in the mental history of the living person. Authenticity of values certainly contributes to their moral standing: If a patient developed entirely new values that were not the result of any new experience or reasoning, but instead were only caused by a brain pathology, these values would not have nearly as much moral weight as the surviving values of Alzheimer's patients which I have discussed here. (I ignore this complication in the main text, because the values of Alzheimer's patients are typically authentic in this sense.)
44. Dworkin, Life's Dominion, p. 224.
45. Dworkin, Life's Dominion, Ibid., p. 225.
46. This understanding of the capacity for autonomy does concur with the formulation I cited in the previous paragraph, since a person lacking a stable set of preferences is hardly able to consciously express her preferences in the life she leads.
47. Dworkin, Life's Dominion, p. 225.
48. None of what I say here should be taken to imply that, in a normal case, a person's own exercise of means-ends reasoning and planning could be ignored by those aiming to respect her autonomy. My point is that a person largely incapable of such reasoning may still be able to exercise autonomy, and not that such reasoning can be taken lightly in an ordinary person who exercises her autonomy through the use of such reasoning.
49. Some readers may think that this requirement is too stringent, and that the hypothetical individuals I go on to describe are still capable of autonomy. If so, it is only easier for me to claim that many Alzheimer's patients retain the capacity for autonomy.
50. I speak of a "creature" rather than a "person" here to allow for the view that the ability that my hypothetical creature lacks is essential to personhood.
51. Why this stipulation? If we imagined a creature who was also unable to control her response to a desire, it would have been easier to see her as lacking the capacity for autonomy. However, I want to show that our intuition that my imagined creature lacks the capacity for autonomy depends on something else: even a creature in control of her desires seems to lack the capacity for autonomy if she can never approve or disapprove her desires.
52. While the ability to understand the temporal progression of one's life as a whole may not be a necessary condition of this reflective scrutiny, its nontemporal analogue - the ability to attain a critical perspective on all the various aspects of one's current self - does indeed seem essential. Yet, again, this is a requirement of full-blown autonomy, and not of the minimal capacity worthy to be dubbed "autonomy."
53. Davidson, Alzheimer's, a Love Story, p. 210.
54. Davidson, Alzheimer's, a Love Story, p. 210. Ibid.
55. I would like to thank Dave Wendler for a helpful discussion of this case.
56. Dworkin's main case-study, Margo, whose grasp of her surroundings and her past is no doubt seriously impaired, is still able to interact with a visitor and also attends an art class for Alzheimer's patients; she is hardly representative of end-stage Alzheimer's.
57. See Dworkin, Life's Dominion, pp. 226-27. Dworkin takes the position that we are not required to disregard the contemporary wishes of a Jehovah's Witness who, having signed an advance directive categorically refusing blood transfusions, now, in a moment of weakness of will, pleads for a life-saving transfusion.