Persons with dementia often prefer to participate in decisions about their health care, but may be prevented from doing so because healthcare decision-making law facilitates use of advance directives or surrogate decision makers for persons with decisional impairments such as dementia. Federal and state disability law provide alternative decision-making models that do not prevent persons with mild to moderate dementia from making their own healthcare decisions at the time the decision needs to be made. In order to better promote autonomy and wellbeing, persons with dementia should be accommodated and supported so they can make their own healthcare decisions.
World Health Organization (WHO), Dementia: A Public Health Priority (2012): at 7.
3.
Id.
4.
Id.
5.
Id.
6.
Because people generally do not wish to lose their independence and possibly become a burden on others, many fear the prospect of acquiring dementia. While some plan for the possibility that they may lose decision-making capacity because of dementia and create advance directives to instruct others how they should make decisions on their behalf (typically not to prolong their life), many persons never engage in advance care planning and must rely on others to make decisions on their behalf. K.N.Yadavet al., “Approximately One in Three US Adults Completes Any Type of Advance Directive for Endof-Life Care,”Health Affairs36, no. 7 (2017): 1244-1251.
7.
N.L.Cantor, “On Avoiding Deep Dementia,”Hastings Center Report48, no. 4 (2018): 15-24.
8.
R.Dresser, “Missing Persons: Legal Perceptions of Incompetent Patients,”Rutgers Law Review46, no. 2 (1994): 609-719; R.Dresser, “Precommitment: A Misguided Strategy for Securing Death with Dignity,”Texas Law Review81, no. 7 (2003): 1823-1847.
9.
The prevalence of dementia has significantly declined in the United States between 2000 and 2012. K.M.Langaet al., “A Comparison of the Prevalence of Dementia in the United States in 2000 and 2012,”JAMA Internal Medicine177, no. 1 (2017): 51-58. Although this is true, the numbers of persons with dementia in the U.S. are projected to double over the next forty years given the increase in the aging population. Centers for Disease Control and Prevention, U.S. Burden of Alzheimer's Disease, Related Dementias to Double by 2060, available at <https://www.cdc.gov/media/releases/2018/p0920-alzheimers-burden-double-2060.html> (last visited December 6, 2019).
10.
See, e.g. T.Powell, Dementia Reimagined: Building a Life of Joy and Dignity from Beginning to End (New York: Avery, 2019).
11.
R.Dworkin, Life's Dominion: An Argument about Abortion, Euthanasia, and Individual Freedom (New York: Vintage Books, 1994).
12.
Id.
13.
Dresser (2003), supra note 8.
14.
Id.
15.
See e.g., Schloendorff v. Society of New York Hospital, 105 N.E. 92 (N.Y. 1914); Uniform Health Care Decisions Act (UHCDA) (1994); T.L.Beauchamp and J.F.Childress, Principles of Biomedical Ethics (New York: Oxford University Press, 7th ed. 2013).
16.
See UHCDA § 5(f) (1994).
17.
See id.
18.
See id.
19.
See, e.g., P.T.Menzel and C.Chandler-Cramer, “Advance Directives, Dementia, and Withholding Food and Water by Mouth,”Hastings Center Report44, no. 3 (2014): 3-37.
20.
See, e.g., P.T.Menzel and B.Steinbock, “Advance Directives, Dementia, and Physician-Assisted Death,”Journal of Law, Medicine & Ethics41, no. 2 (2013): 484-500. Interestingly, a recent study of persons who have a biomarker for cognitive impairment due to Alzheimer's Disease found that becoming aware of the presence of the biomarker did not increase their desire for physician aid in dying compared to their baseline support for this end-of-life option. E.A.Largentet al., “Attitudes toward Physician-Assisted Death from Individuals Who Learn They Have an Alzheimer Disease Biomarker,”JAMA Internal Medicine76, no. 7 (2019): 864-866.
21.
Cantor, supra note 7.
22.
R.G.Logsdon, “Making the Most of Every Day: Quality of Life,” in P.B.Harris, ed., The Person with Alzheimer's Disease: Pathways to Understanding the Experience (Baltimore: The Johns Hopkins University Press, 2002): 75-87, at 82. In a larger study, the investigators found that the majority of persons with dementia residing in their homes (i.e., those with mild to moderate dementia) reported positive feelings (e.g., happiness, contentment, and hope) and a high QOL. H.Series, “Best Interests Determination: A Medical Perspective,” in C.Foster, J.Herring, and I.Doron, eds., The Law and Ethics of Dementia (Oxford: Hart Publishing, 2014): at 107. A study of persons with dementia living in nursing homes found no difference in reports of QOL compared to those living at home, and so the level of dementia may not clearly correspond to perceptions of quality of life. Id. It may be the case that moving into a long-term care facility provides more opportunities to socialize with others than when one lived at their own home, which may offset any negative aspects of living in a facility such as loss of privacy or being required to abide by policies that may not accord with one's preferences. J.Killick, “‘I Can't Place This Place at All’: The Nursing Home Experience,” in P.B.Harris, ed., The Person with Alzheimer's Disease: Pathways to Understanding the Experience (Baltimore: The Johns Hopkins University Press, 2002): 270-282.
23.
D.Orentlicher, “Destructuring Disability: Rationing of Health Care and Unfair Discrimination against the Sick,”Harvard Civil Rights-Civil Liberties Law Review31, no. 1 (1996): 49-87.
R.F.Young, “Medical Experiences and Concerns of People with Alzheimer's Disease,” in P.B.Harris, ed., The Person with Alzheimer's Disease: Pathways to Understanding the Experience (Baltimore: The Johns Hopkins University Press, 2002): 29-48. Additionally, in the case of dementia, persons probably do not have poor quality of life in the later stages, not just due to adaptation, but also because they are not experiencing their life as poor. D.Callahan, “Terminating Life-Sustaining Treatment of the Demented,”Hastings Center Report25, no. 6 (1995): 25-31.
26.
R.S.Dresser and J.A.Robertson, “Quality of Life and Non-Treatment Decisions for Incompetent Patients: A Critique of the Orthodox Approach,”Law, Medicine & Health Care17, no. 3 (1989): 234-244.
27.
See Young, supra note 25.
28.
Id., at 36. Not all adjusted well. One study participant commented, “It's been three years since I found out, but in the meantime they took away my car, my business, and everything that was important to me. I knew it was coming and I know I should move on to some positive action, but I'm so down.” Id. Other studies of the experience of living with dementia have likewise found a range of emotional responses and QOL assessments. For example, one small study found that about half of the respondents with dementia reported negative feelings (e.g., sadness, anger, frustration), but that there was variation in responses, with some respondents reporting feelings of happiness or pleasure. Series, supra note 22, at 107. Another qualitative study of persons with AD found that while some people with AD reported experiencing confusion, fear, frustration, and anger, as well as embarrassment about how others may perceive them, these feelings were not universal. A. Phinney, “Living with the Symptoms of Alzheimer's Disease,” in P.B.Harris, ed., The Person with Alzheimer's Disease: Pathways to Understanding the Experience (Baltimore: The Johns Hopkins University Press, 2002): 49-74. Indeed, some people with AD framed memory loss and other functional limitations as a normal experience of aging and did not report being bothered. Id.
29.
This terminology is used even by persons who specialize in elder law. See, e.g., K.Peck and R.L.Law, Alzheimer's and the Law: Counseling Clients with Dementia and Their Families (ABA Book Publishing, 2014): at 57.
30.
J.Perryet al., “Nurse-Patient Communication in Dementia: Improving the Odds,”Journal of Gerontological Nursing31, no. 4 (2005): 43-52.
31.
Series, supra note 22, at 106. See also Perry, supra note 30.
32.
Id.
33.
T.Shakespeare, “The Social Model of Disability,” in L.J.Davis, ed., The Disability Studies Reader (New York: Routledge, 2013): 195-203.
34.
Id. at 196.
35.
Id.
36.
S.R.Sabat, “Surviving Manifestations of Selfhood in Alzheimer's Disease,”Dementia1, no. 1 (2005): 25-36.
37.
R.Beard, Living with Alzheimer's: Managing Memory Loss, Identity, and Illness (New York, NYU Press, 2016). Indeed, decision-making capacity is often not formally assessed. L.M.Milleret al., “Shared Decision-Making in Dementia: A Review of Patient and Family Carer Involvement,”Dementia15, no. 5 (2016): 1141-1157.
38.
Miller et al., supra note 37.
39.
Id.; D.Fetherstonehaughet al., “‘Being Central to Decision Making Means I am Still Here!”: The Essence of Decision Making for People with Dementia,”Journal of Aging Studies27, no. 2 (2013): 143-150; M.S.Wright, “Dementia, Autonomy, and Supported Healthcare Decision Making,”Maryland Law Review79, no. 2 (forthcoming 2020).
40.
Id.
41.
Miller et al., supra note 37.
42.
R.H.Fortinsky, “Health Care Triads and Dementia Care: An Integrated Framework and Future Directions,”Aging & Mental Health5, Supplement 1 (2001): S35-S48, at S43.
43.
See, e.g., M.A.Hallet al., “Rethinking Health Law,”Wake Forest Law Review41, no. 2 (2006): 341-345; L.Shepherd and M.A.Hall, “Patient-Centered Health Law and Ethics,”Wake Forest Law Review45 (2010): 1429-1452; M.S.Wright, “End of Life and Autonomy: The Case for Relational Nudges in End-of-Life Decision-Making Law and Policy,”Maryland Law Review77, no. 4 (2018): 1062-1141; Miller et al., supra note 37; A.Hall, “Making Good Choices: Toward a Theory of Well-being in Medicine,”Theoretical Medicine and Bioethics37 (2016): 383-400; Wright, supra note 39.
44.
This includes state guardianship law, which may apply when a person or an organization petitions a court for guardianship on behalf of a person with impaired decision making. If a court finds the person incompetent to manage their affairs, then a guardian will be appointed and will be responsible for making decisions on behalf of the person. L.Salzman, “Rethinking Guardianship (Again): Substituted Decision Making as a Violation of the Integration Mandate of Title II of the Americans with Disabilities Act,”University of Colorado Law Review81, no. 1 (2010): 157-245. Because dementia impairs decision making, persons with dementia may have guardians appointed for them.
45.
42 U.S.C.A. §§ 12101 to 12213.
46.
§ 12182(b)(2)(A)(iii); Olmstead v. L.C., 527 U.S. 581 (1999). See also Salzman, supra note 44; N.D.Agaronniket al., “Knowledge of Practicing Physicians about Their Legal Obligations When Caring for Patients with Disability,”Health affairs38, no. 4 (2019): 545-553.
47.
42 U.S.C.A. § 12102 (West).
48.
Section 1557 of the affordable Care Act contains a similar nondiscrimination and accommodation mandate. 45 C.F.R. § 92.202.
49.
Physicians are not following healthcare decision-making law if they rely on a surrogate when their patient with dementia still has decision-making capacity, however.
Id.; Perry, supra note 30; J.B.Orange and E.B.Ryan, “Alzheimer's Disease and Other Dementias: Implications for Physician Communication,”Clinics in Geriatric Medicine16, no. 1 (2000): 153-173.
54.
Id.
55.
This is also the case in other healthcare contexts for other types of disabilities. Agaronnik et al., supra note 46; Salzman supra note 44.
56.
See, e.g., Salzman, supra note 44, at 223.
57.
See Institute of Medicine, Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life (2015): at 166-67. Often the patient's family is also involved in important decisions in what is known as the physician-patient-companion triad. Fortinsky, supra note 42; R.D.Adelmanet al., “The Physician-Elderly Patient-Companion Triad in the Medical Encounter: The Development of a Conceptual Framework and Research Agenda,”The Gerontologist27, no. 6 (1987): 729-734.
58.
Miller et al., supra note 37; Featherstonehaugh et al., supra note 39.
59.
See, e.g., M.S.Wrightet al., “Severe Brain Injury, Disability, and the Law: Achieving Justice for a Marginalized Population,”Florida State University Law Review45, no. 2 (2018): 313-382, at 355. Some scholars have argued that guardianship is incompatible with the ADA because it is a form of disability discrimination. Salzman, supra note 44. Others have argued that guardianship is incompatible with the Convention on the Rights of Persons with Disabilities. R.D.Dinerstein, “Implementing Legal Capacity under Article 12 of the UN Convention on the Rights of Persons with Disabilities: The Difficult Road from Guardianship to Supported Decision-Making,”Human Rights Brief19 (2011-12): 8-12. Some states have thus started to reform their guardianship laws to attempt to find “least restrictive alternatives.” See, e.g., Me. Rev. Stat. tit. 18-C, § 5-401.
60.
Salzman, supra note 44; N.A.Kohnet al., Supported Decision Making: A Viable Alternative to Guardianship, Penn State Law Review1117 (2013): 1111-1157; R.Diller, “Legal Capacity for All: Including Older Persons in the Shift from Adult Guardianship to Supported Decision Making,”Fordham Urban Law Journal43, no. 3 (2016): 495-538.
61.
Kohn et al., supra note 60.
62.
This is in contrast to some models found in other countries. Id.
63.
Convention on the Rights of Persons with Disabilities (CRPD) art. 12, G.A. Res. 61/106, U.N. Doc. A/RES/61/106 (Dec. 13, 2006).
64.
See, e.g., In re Guardianship of Dameris L., 56 N.Y.S.2d 848, 853 (Surr. 2012).
65.
For a detailed discussion of these supported decision-making laws, see Wright, supra note 39.
66.
Tex. Est. Code Ann. §§ 1357.001 to 1357.102 (West).
67.
Del. Code Ann. tit. 16, §§ 9401(a) to 9410(a) (West).
68.
Wis. Stat. Ann. §§ 52.01 to 52.32 (West).
69.
D.C. Code Ann. §§ 7-2131 to 7-2134 (West).
70.
Alaska Stat. Ann. §§ 13.56.010 to 13.56.195 (West).
71.
Ind. Code Ann. §§ 29-3-14-1 to 29-3-14-13(West).
72.
See, e.g., Me. Rev. Stat. tit. 18-C, § 5-401.
73.
See, e.g., Kan. Stat. Ann. § 65-3276 (West).
74.
Many scholars are, in fact, dismissive of supported decision making for this population. M.I.Hall, “Dementia, Autonomy and Guardianship for the Old,” in C.Foster, J.Herring, and I.Doron, eds., The Law and Ethics of Dementia (Oxford: Hart Publishing, 2014): 339-350.
75.
Diller, supra note 60.
76.
WHO, supra note 2, at 45.
77.
Id.
78.
Id., at 3.
79.
Wright, supra note 39.
80.
Miller et al., supra note 37.
81.
Kohn et al., supra note 60.
82.
See, e.g., Powell, supra note 10 (describing an instance in which her mother, who had dementia, was arguably being supported in her healthcare decision making by her adult children).
83.
Cantor, supra note 7.
84.
Disabilities that affect cognitive abilities are already highly stigmatized, and writing about dementia in overwhelmingly negative terms may further stigmatize this disorder. As some disability rights advocates have argued, when society accepts choosing death over living with a disability, it demonstrates bias against persons with disabilities. S.R.Bagenstos, “Disability, Life, Death, and Choice,”Harvard Journal of Law & Gender29 (2006): 425-463. Although this article does not address the substance of healthcare decisions persons with dementia make, deferring to individuals with dementia to decide what is in their own current interests (be that prolonging life or hastening death), this article does argue for different decision-making processes that do not prevent persons with dementia from making their own healthcare decisions.
85.
Perry, supra note 30.
86.
Wright, supra note 43. This would be consistent with recent trends in health law scholarship that place greater emphasis on relationality. See e.g., M.A.Hall, “Foreword: Toward a Relationship-Centered Health Law,”Wake Forest Law Review50 (2015): 233-249; B.Jennings, “Solidarity Near the End of Life: The Promise of Relational Decision Making in the Care of the Dying,” in J.K.Davis, ed., Ethics at the End of Life: New Issues and Arguments (New York: Routledge, 2017): 218-234.
87.
Bagenstos, supra note 84.
88.
This is described in Wright, supra note 39.
89.
Bagenstos, supra note 84.
90.
Wright, supra note 43.
91.
J.M.Wilkins, “Dementia, Decision Making, and Quality of Life,”AMA Journal of Ethics19, no. 7 (2017): 637-639, at 637.
