Advance directives, dementia, and physician-assisted death

Journal of Law, Medicine and Ethics

Volumn 41, Issue 2, 2013, Pages 484-500

  Menzel, Paul T ^a   Steinbock, Bonnie ^b  

^a PACIFIC LUTHERAN UNIVERSITY   (United States)

^b STATE UNIVERSITY OF NEW YORK   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; DEMENTIA; ETHICS; EUTHANASIA; HUMAN; LEGAL ASPECT; LIVING WILL; MENTAL CAPACITY; PERSONAL AUTONOMY; PSYCHOLOGICAL ASPECT; SOCIOECONOMICS;

ADVANCE DIRECTIVES; DEMENTIA; EUTHANASIA; HUMANS; MENTAL COMPETENCY; PERSONAL AUTONOMY; VALUE OF LIFE;

EID: 84879706839     PISSN: 10731105     EISSN: 1748720X     Source Type: Journal    
DOI: 10.1111/jlme.12057     Document Type: Article

References (43)

1. "Physician-assisted death" (PAD) covers both physician-assisted suicide (PAS) and euthanasia. In PAS the patient takes lethal drugs made available through a physician's prescription; in euthanasia, the physician delivers the drugs, usually by injection. The term "physician-assisted suicide" has fallen out of favor in Oregon; proponents, wishing to distinguish it from suicide in general, often prefer "aid-in-dying." We use both.
2. Aid-in-dying (or PAS) is legal in the United States in Oregon and Washington by statute: Oregon Death With Dignity Act, Or. Rev. Stat. §§ 127.800-897 (1997); Washington Death with Dignity Act, Wash. Rev. Code §§ 70.245.010-904 (2009). It is legal by a decision of the state supreme court in Montana: Baxter v. Montana No. DA 09-0051 (2009). In British Columbia it is conditionally legal as of June 2012 by order of the Supreme Court of British Columbia: Carter v. Canada (Attorney General) 2012 BCSC 886 (June 15, 2012), available at (last visited January 28, 2013). In Switzerland, PAS and assisted suicide more generally are legal by statute, without restriction to terminal illness; voluntary self-administration is still required (that is, only assisted suicide, not euthanasia, is allowed): S. A. Hurst and A. Mauron, "Assisted Suicide and Euthanasia in Switzerland: Allowing a Role for Non-Physicians, "BMJ 326, no. 7383 (February 1, 2003): 271-273. In Belgium, where euthanasia administered by a physician is legal, the patient must still be legally competent and conscious at the moment of making the request for it. See the Belgian Act on Euthanasia of May 28, 2002, translated into English in Ethical Perspectives 9, nos. 2-3 (2002): 182-188. Recently, legislation has been introduced in Belgium that would expand euthanasia to minors and those suffering from dementia; see (last visited May 18, 2013).
3. Even in Oregon and Washington, the three most frequently mentioned reasons for requesting aid-in-dying are loss of autonomy, decreasing ability to engage in activities that make life enjoyable, and loss of dignity. Inadequate pain control is cited much less often. See Oregon Public Health Division Report, at 2, available at (last visited May 1, 2013), and the Washington State Department of Health 2011 Death with Dignity Act Report, at 1, available at (last visited January 28, 2013).
4. Retirement Policy.org, available at (last visited January 28, 2013).
5. The higher estimate is from the National Institute of Neurological Disorders and Stroke, available at (last visited May 1, 2013). A figure of 22.4% is cited in a 2007 Australian study; see AIHW (Australian Institute of Health and Welfare), Dementia in Australia: National Data Analysis and Development, Cat. no. AGE 53 (Canberra: Australian Institute of Health and Welfare, 2007): at 56, available at (last visited January 28, 2013).
6. Termination of Life on Request and Assisted Suicide (Review Procedures) Act (2002), available at (last visited May 1, 2013). The procedures codified in the law reflect Dutch medical practice since 1973, when doctors began openly providing euthanasia on request.
7. In In re Quinlan, 70 N.J. 10, 355 A.2d 647 (NJ 1976), the New Jersey Supreme Court held that incompetent patients do not lose their right to privacy, including the right to refuse life-sustaining treatment, and that this right could be exercised on their behalf by a guardian.
8. In Cruzan v. Director, Missouri Department of Health, 497 U.S. 261 (1990), the United States Supreme Court upheld the right of guardians to discontinue life-sustaining treatment, both respirators and feeding tubes, from patients in permanent vegetative states, while also upholding states' rights to require clear and convincing evidence of the patient's prior wishes.
9. In Bouvia v. Superior Court, 225 Cal. Rptr. 297 (Ct. App. 1986), the California Court of Appeals held that a competent patient has the right to refuse tube feeding and may not be force-fed against her will.
10. For an extensive defense of this path to death, see S. A. Terman (with R. B. Miller and M. S. Evans), The Best Way to Say Goodbye: A Legal Peaceful Choice at the End of Life (Carlsbad, CA: Life Transitions Publications, 2007). For its legal basis, see T. M. Pope and L. E. Anderson, "Voluntarily Stopping Eating and Drinking: A Legal Treatment Option at the End of Life, "Widener Law Review 17, no. 2 (2011): 363-427.
11. R. Dworkin, Life's Dominion: An Argument About Abortion, Euthanasia and Individual Freedom ( New York: Alfred A. Knopf, 1993), at 184, and D. W. Brock, "Voluntary Active Euthanasia, "Hastings Center Report 2, no. 2 (1992): 10-22.
12. For an opposing view, see H. Hendin and K. Foley, "Physician-Assisted Suicide in Oregon: A Medical Perspective, "Issues in Law and Medicine 24, no. 2 (2008): 121-145.
13. M. P. Cees, M. Hertogh, M. E. de Boer, R. Droees, and J. A. Eefsting, "Would We Rather Lose Our Life Than Lose Our Self? Lessons from the Dutch Debate on Euthanasia for Patients with Dementia, " American Journal of Bioethics 7, no. 4 (2007): 48-56.
14. M. Cook, "Informed Consent in Netherlands: Euthanasia, " BioEdge, November 12, 2011, available at (last visited May 1, 2013).
15. Koninklijke Nederlandsche Maatschappij tot bevordering der Geneeskunst (KNMG, Royal Dutch Medical Association), "Position Paper: The Role of the Physician in the Voluntary Termination of Life, " June 2011, at 7, available at (last visited May 1, 2013).
16. In "Legal Euthanasia: Ethical Issues in an Era of Legalized Aid in Dying, "Journal of Medicine and Philosophy 18, no. 3 (1993): 297-322, Leslie P. Francis argues that if any advance directives for euthanasia are to be granted authority, they should have been made repeatedly in advance, with the patient now confirming that the time has come.
17. Medical Care Corporation, "Functional Assessment Staging Test, " 2010, available at (last visited May 1, 2013).
18. B. Reisberg, S. H. Ferris, M. J. De Leon, and T. Crook, "The Global Deterioration Scale for Assessment of Primary Degenerative Disease, " American Journal of Psychiatry 139, no. 9 (1982): 1136-1139, at 1138.
19. S. L. Mitchell, B. S. Black, M. Ersek, L. C. Hanson, S. C. Miller, G. A. Sachs, J. M. Teno, and R. S. Morrison, "Advanced Dementia: State of the Art and Priorities for the Next Decade, " Annals of Internal Medicine 156, no. 1 (2012): 45-51, at 47.
20. See Australian Institute of Health and Welfare, supra note 5, at 54 and 61-63. The Canadian study is reported in J. E. Graham, K. Rockwood, B. L. Beattie, R. Eastwood et al., "Prevalence and Severity of Cognitive Impairment With and Without Dementia in an Elderly Population, "The Lancet 349, no. 9068 (June 21, 1997): 1793-1797. The Canadian percentages estimated for mild/moderate/severe dementia are our estimates from slightly different hard data reported by Graham et al.
21. R. Leleux, The Living End: A Memoir of Forgetting and Forgiving ( New York: St. Martin's Press, 2012).
22. S. Frederick and G. Loewenstein, "Hedonic Adaptation, " in D. Kahneman, E. Diener, and N. Schwarz, eds., Well-being: The Foundations of Hedonic Psychology ( New York: Russell Sage Foundation, 1999): 302-329; P. T. Menzel, P. Dolan, J. Richardson, and J. A. Olsen, "The Role of Adaptation to Disability and Disease in Health State Valuation: A Preliminary Analysis, "Social Science and Medicine 55, no. 12 (2002): 2149-2158; and D. Arnold, A. Girling, A. Stevens, and R. Litford, "Comparison of Direct and Indirect Methods of Estimating Health State Utilities for Resource Allocation: Review and Empirical Analysis, "BMJ 339, no. b2688 (July 22, 2009), available at (last visited May 1, 2013).
23. A. Asch, "Recognizing Death While Afrming Life: Can End of Life Reform Uphold a Disabled Person's Interest in Continued Life?" Hastings Center Report 35, no. 6 (NovemberDecember 2005): S31-S36.
24. R. Dresser and J. S. Robertson, "Quality of Life and Non-Treatment Decisions for Incompetent Patients, " Law, Medicine & Health Care 17, no. 3 (1989): 234-244. For an insightful and comprehensive treatment of this challenge that deals with Dresser's numerous other writings, see L. W. Sumner, Assisted Death (Oxford: Oxford University Press, 2011): at 102-117. Sumner also gives a detailed treatment of Dworkin's position, including the Margo case that features centrally in Dworkin's discussion.
25. Id. (Dresser and Robertson), at 235.
26. D. Parfit, Reasons and Persons ( Oxford: Oxford University Press, 1985): 199-379.
27. D. DeGrazia, "Advance Directives, Dementia, and 'the Someone Else Problem, '" Bioethics 13, no. 5 (1999): 373-391, and Human Identity and Bioethics (New York: Cambridge University Press, 2005): at 159-202.
28. A. D. Firlik, "Margo's Logo, " JAMA 265, no. 2 (1991): 201.
29. H. Klepper and M. Rorty, "Personal Identity, Advance Directives, and Genetic Testing for Alzheimer Disease, " Genetic Testing 3, no. 1 (1999): 99-106, and N. Rhoden, "The Limits of Legal Objectivity, "North Carolina Law Review 68
30. Even someone who espouses a psychological theory of identity and denies that identity is based essentially on bodily continuity could maintain that the now-demented person is the same individual as before. For example, on Jeff McMahan's mind essentialism, the criteria for numerical identity are satisfied so long as the individual has the capacity for consciousness. Since persons with dementia are conscious, their numerical identity remains the same. See J. McMahan, The Ethics of Killing: Problems at the Margins of Life (New York: Oxford University Press, 2002): at 3-94.
31. M. Schechtman, The Constitution of Selves ( Ithaca, NY: Cornell University Press, 1996).
32. See Dworkin (1993), id., at 201.
33. A. Jaworska, "Respecting the Margins of Agency: Alzheimer's Patients and the Capacity to Value, " Philosophy & Public Affairs 28, no. 2 (1999): 105-138, at 112.
34. The Who, "My Generation" (song), 1965. The citation of Daltrey is ours, not Jaworska's.
35. R. Berghmans, "Advance Directives and Dementia, " Annals of the New York Academy of Sciences 913 (January, 2000): 105-110, at 107.
36. Our recommendation that an AED convey the relevant specific stages and affective characteristics of dementia that its writer intends to trigger implementation, and that a person reiterate the directive periodically, ideally in early dementia, is a relatively small burden compared to all the other dimensions that need to be addressed in a good advance directive for dementia. See L. Brodoff, "Planning for Alzheimer's Disease with Mental Health Advance Directives, "Elder Law Journal 17, no. 2 (2010): 239-308, and the Alzheimer's Disease/Dementia Mental Health Advance Directive devised by L. Brodoff and R. Miller that is provided by Compassion & Choices of Washington [state] at (last visited May 1, 2013).
37. A. Gentleman, "Inside the Dignitas House, " The Guardian, November 18, 2009, available at (last visited May 1, 2013).
38. Unlike Mrs. D. and Julian, who are based on actual people, Helen is a fictitious example. How realistic is Helen? We should point out that when one of us presented this paper, a physician in the audience experienced with patients in dementia said that he had never met a demented person like Helen.
39. Dworkin makes this point in his response to Seana Shiffrin in "Ronald Dworkin Replies, " in J. Burley, ed., Dworkin and His Critics (Oxford: Blackwell Publishing Company, 2004): at 370.
40. The notion of a sliding scale is used by A. Buchanan and D. W. Brock, "Deciding for Others: Competency, "Milbank Quarterly 64, no. 2 (1986): 67-80. Some of the factors we include in our sliding scale are used by L. P. Francis, "Decisionmaking at the End of Life: Patients with Alzheimer's or Other Dementia, "Georgia Law Review 35 (winter, 2001): 539-592, at 588 and 592.
41. An alternative approach would be to stipulate that AEDs be implemented only in the latest, advanced stages of dementia. This would have the advantage of not requiring clinicians to make subjective decisions about the strength of desires; they would base their decisions to uphold AEDs on clear medical diagnoses. Moreover, this approach would reach the same results we have recommended, upholding the AEDs of Ruth, Walter, and Lotte, but not Margo or Helen. From a philosophical perspective, however, our sliding scale approach supplies moral reasons why some AEDs should be implemented and others not.
42. Including, arguably, food and water by mouth. For the legal basis of this refusal, see Pope and Anderson, supra note 10, at 422-426, including their discussion of accomplishing the refusal by advance directive.
43. In a study of 323 nursing home residents with advanced dementia, 45 percent lived longer than 18 months, 86 percent developed an eating problem, and the average number of transfers to a hospital in the last 90 days of life was 1.6. See Mitchell et al. (2012), supra note 19, at 45-46, and S. L. Mitchell, J. M. Teno, D. K. Kiely, M. L. Shaffer, R. N. Jones, H. G. Prigerson, L. Volicer, J. L. Givens, and M. B. Hamel, "The Clinical Course of Advanced Dementia, "New England Journal of Medicine 361, no. 15 (2009): 1529-1538.