Deciding for others at the end of life: Storytelling and moral agency

Journal of Clinical Ethics

Volumn 16, Issue 2, 2005, Pages 127-143

  Yarborough, Mark ^a,b  

^a Center for Bioethics and Humanities   (United States)

^b UNIVERSITY OF COLORADO   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

AGED; DEATH AND EUTHANASIA; DECISION MAKING; ETHICS; HUMAN; INFORMED CONSENT; LIVING WILL; MORALITY; PASSIVE EUTHANASIA; PROFESSIONAL PATIENT RELATIONSHIP; REVIEW; SOCIOECONOMICS; TREATMENT REFUSAL; VERBAL COMMUNICATION;

DEATH AND EUTHANASIA; PROFESSIONAL PATIENT RELATIONSHIP;

ADVANCE DIRECTIVES; AGED; CHOICE BEHAVIOR; DECISION MAKING; EUTHANASIA, PASSIVE; HUMANS; JUDGMENT; MORAL OBLIGATIONS; NARRATION; THIRD-PARTY CONSENT; TREATMENT REFUSAL; VALUE OF LIFE;

EID: 23744472651     PISSN: 10467890     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Review

References (48)

1. Presidents Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Deciding to Forego Life-Sustaining Treatment A Report on the Ethical, Medical, and Legal Issues in Treatment Decisions (Washington, D.C.: Government Printing Office, 1983);
2. New York State Task Force on Life and the Law, When Others Must Choose: Deciding for Patients Without Capacity (New York: March 1992);
3. A.E. Buchanan and D.W. Brock, Deciding for Others The Ethics of Surrogate Decision Making (Cambridge, U.K.: Cambridge University Press, 1989).
4. The description of the standards of surrogates' consent is based upon the account set forth in A. Meisel, The Right to Die, 2nd ed., vol. 1 (New York: John Wiley and Sons, 1995), 343-52.
5. For an explanation of the philosophical heritage of these distinctions, see J. Nelson, "Critical Interests and Sources of Familial Decision-Making Authority for Incapacitated Patients," Journal of Law, Medicine & Ethics 23, no. 2 (1995): 143-48, p. 143.
6. See note 2 above.
7. T.L. Beauchamp and J.F. Childress, Principles of Biomedical Ethics, 5th ed. (New York: Oxford University Press, 2001), 99-100.
8. T.L. Beauchamp and J.F. Childress, Principles of Biomedical Ethics, 5th ed. Ibid., p. 103.
9. M. Yarborough, "Adults Are Not Big Children: Examining Surrogate Consent to Research Using Adults with Dementia," Cambridge Quarterly Review of Healthcare Ethics 11 (2002): 160-68.
10. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research (1979),
11. reprinted in Encyclopedia of Bioethics, rev. ed., ed. W. Reich, vol. 5, (New York: Simon & Schuster Macmillan, 1995), 2768-9.
12. R.S. Dillon, "Respect and Care: Toward Moral Integration," Canadian Journal of Philosophy 22 (1992): 105-32, p. 115.
13. D.P. Sulmasy et al., "The Accuracy of Substituted Judgments in Patients with Terminal Diagnoses," Annals of Internal Medicine 128 (1998): 621-29.
14. S.C. Hines et al., "Improving Advance Care Planing by Accommodating Family Preferences," Journal of Palliative Medicine 4 (2001): 481-9.
15. J. Suhl et al., "Myth of Substituted Judgment: Surrogate Decision Making Regarding Life Support is Unreliable," Archives of Internal Medicine 154, no. 1 (1994): 90-6;
16. and P.H. Ditto et al., "Advance Directives as Acts of Communication: A Randomized Controlled Trial," Archives of Internal Medicine 161 (2001): 421-30.
17. A.R. Eiser and M.D. Weiss, "The Under-achieving Advance Directive: Recommendations for Increasing Advance Directive Completion," American Journal of Bioethics 1, no. 4 (2001), http://bioethics.net.
18. M.L. Slevin et al., "Attitudes to Chemotherapy: Comparing Views of Patients with Cancer with Those of Doctors, Nurses, and General Public," British Medical Journal 300 (1990): 1458-60.
19. Aristotle, Nicomachean Ethics, bk. I: ch. 7, 1198a, in The Basic Works of Aristotle, ed. R. McKeon (New York: Random House, 1941.)
20. Aristotle, The Basic Works of Aristotle, Ibid., p. 1100a.
21. Aristotle, The Basic Works of Aristotle, 1100a. Ibid.
22. G.A. Sachs, "Advance Consent for Dementia Research," Alzheimer Disease and Associated Disorders 8, suppl. 4 (1994): 25.
23. See H.L. Nelson and J.L. Nelson, The Patient in the Family: An Ethics of Medicine and Families (New York: Routledge, 1995);
24. J. Hardwig, "What about the Family?" Hastings Center Report 20, no. 2 (1990): 5-10;
25. M. Yarborough, "Continued Treatment of the Fatally Ill for the Benefit of Others," Journal of the American Geriatrics Society 36 (1988): 63-7;
26. N.S. Jecker, "Anencephalic Infants and Special Relationships," Theoretical Medicine 11, no. 4 (1990): 333-42.
27. J. Blustein, "Choosing for Others as Continuing a Life Story: The Problem of Personal Identity Revisited," Journal of Law, Medicine & Ethics 27, no. 1 (1999): 20-31.
28. J. Marta, in "Toward a Bioethics for the Twenty-First Century: A Ricoeurian Poststructuralist Narrative Hermeneutic Approach to Informed Consent," employs a similar insight when she speaks of the cachet of truth in narratives, in Stories and Their Limits, ed. H.L. Nelson (New York: Routledge, 1997): 207.
29. A. MacIntyre, After Virtue (Notre Dame, Ind.: Notre Dame University Press, 1984), 213-4. MacIntrye describes how life narratives always exist in relation to and are embedded within multiple narratives; see also note 3 above, p. 148, wherein the author states that "our characters come attached to others."
30. See note 15 above, p. 1094b.
31. See note 9 above, p. 125.
32. Rebecca Dresser, Professor of Law and Professor of Ethics in Medicine at Washington University in St. Louis, Mo., communication with the author, 4 December 2000.
33. H. Brody, " 'My Story is Broken; Can You Help Me Fix it?' Medical Ethics and the Joint Construction of Narrative," Literature and Medicine 13 (1994): 79-92;
34. K. Montgomery, Doctors' Stories: The Narrative Structure of Medical Knowledge (Princeton, N.J.: Princeton University Press, 1991)
35. and Stories Matter: The Role of Narrative in Medical Ethics, ed. R. Charon and M. Montello (New York: Routledge, 2002).
36. See note 19 above.
37. J.W. Warren et al., "Informed Consent by Proxy: An Issue in Research with Elderly Patients," New England Journal of Medicine 315 (1986): 1124-8.
38. P.J. Candilis, R.W. Wesley, and A. Wichman, "A Survey of Researchers Using a Consent Policy for Cognitively Impaired Human Research Subjects," IRB: Ethics & Human Research 15 (1993): 1-4.
39. Title 45, Code of Federal Regulations, Part 46.
40. K.C. Glass and M. Speyer-Ofenberg, "Incompetent Persons as Research Subjects and the Ethics of Minimal Risk," Cambridge Quarterly of Healthcare Ethics 5 (1996): 362-72.
41. See note 7 above.
42. National Bioethics Advisory Commission, Research Involving Persons With Mental Disorders That May Affect Decisionmaking Capacity (Rockville, Md., 12 November 1998).
43. Compare E.W. Keyserlingk et al., "Proposed Guidelines for the Participation of Persons with Dementia as Research Subjects," Perspectives in Biology & Medicine 38 (1995): 319-62, pp. 334-5 and NBAC, see note 33 above.
44. R. Dresser, "Advance Directives in Dementia Research: Promoting Autonomy and Protecting Subjects," IRB: Ethics & Human Research 23, no. 1 (2001): 1-6.
45. See note 8 above.
46. S.B. Rubin, "Beyond the Authoritative Voice: Casting a Wide Net in Ethics Consultation," in Stories Matter: The Role of Narrative in Medical Ethics, ed. R. Charon and M. Montello (New York: Routledge, 2002): 109-18.
47. J. Coulehan, "Feeding the Moral Sense: The Case of Jim Blair," The Journal of Clinical Ethics 11, no. 3 (Fall 2000): 272-8.
48. E.H. Loewy, "Terminal Sedation, Self-Starvation, and Orchestrating the End of Life," Archives of Internal Medicine 161, no. 3 (2001): 329-32.