Abstract
In this chapter, we explore the issue of assisted dying for individuals with dementia at the nexus of ethics and law. We set out the basic medical realities of dementia and the available data about the desire for the option of assisted dying in the face of dementia. We then describe law and practice with respect to voluntary euthanasia and assisted suicide in jurisdictions that permit at least some assisted dying. We conclude that, because of the peculiar ways in which some of the features of dementia interact with specific legislative provisions, less access to assisted dying for persons with dementia can be realized through the legislation than might have been intended or expected. We then describe draft assisted dying legislation that is before the federal Parliament of Canada. We conclude that, because of the peculiar ways in which some of the features of dementia interact with specific legislative provisions, more access to assisted dying for persons with dementia would be realized, if the legislation was passed as drafted, than might be intended or expected. This exercise reveals that very careful attention needs to be paid to the features of dementia if drafting assisted dying legislation in order to actually achieve the desired law reform effect (whatever that might be). The interplay of common ethical rationales for permitting assisted dying (e.g., autonomy and alleviation of suffering) with common features of dementia (e.g., loss of competence before the terminal phase of the illness, loss of the capacity to communicate before the loss of the capacity to suffer) raises challenges for translating one’s ethical position on assisted dying for individuals with dementia into law.
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Notes
- 1.
- 2.
The increased prevalence may be a result of a number of different factors: “higher rates of associated conditions, such as hypertension, heart disease, stroke, and diabetes, and higher smoking and obesity rates, all of which increase the risk of dementia. First Nations populations also have an increased vulnerability to the social determinants of health; most notable for dementia are lower incomes and lower levels of educational attainment. Recent studies suggest that sufferers of Post-Traumatic Stress Disorder (PTSD) are at an increased risk of dementia. As a result of the historical trauma attributed to residential school experience and the ongoing intergenerational effects, PTSD may also contribute to the overall prevalence of dementia for First Nations, Inuit and Metis people” (Jacklin et al. 2013, e39–e40).
- 3.
Other, more complex, scales are used by health-care professionals to identify the progression of dementia with more precision. These include, for example, the Clinical Dementia Rating (CDR) which rates dementia on a five step scale. The Global Deterioration Scale for Assessment of Primary Degenerative Dementia (or Reisberg scale) is the measure used for the progression of Alzheimer’s disease and divides Alzheimer’s disease into seven stages (Marcel et al. 2011).
- 4.
For a review of the progression of various forms of dementia, see Alzheimer’s Society (2011).
- 5.
Bentley v Maplewood Seniors Care Society (2014) at para 18.
- 6.
Ibid. at para 27.
- 7.
A distinct, but critically important, question is whether individuals with dementia are adequately protected at the end of life and are not having potentially life-sustaining treatment withheld or withdrawn or having potentially-life-shortening palliative interventions administered without their consent (or authorization from a substitute decision-maker) or without their knowledge (or without the knowledge of their substitute decision-maker). This must remain the topic for another paper. Although not specific to dementia, readers interested in unilateral decision-making are directed to Downie et al. (2014).
- 8.
Netherlands, Termination of Life on Request and Assisted Suicide (Review Procedures Act) (2002).
- 9.
Methods are being developed to assess pain in persons with dementia. See for example, Lichtner et al. (2014). However, “there are a considerable number of pain assessment tools available for use with the elderly cognitive impaired population. However there is limited evidence about their reliability, validity and clinical utility. On the basis of this review no one tool can be recommended giving the existing evidence” (Ibid., 138).
- 10.
Belgium, The Belgian Act on Euthanasia of May, 28th (2002), s 4, § 2, 184
- 11.
Carter v Canada (Attorney General) (2012) at para 509.
- 12.
Ibid. at para 508.
- 13.
Belgium, The Belgian Act on Euthanasia of May, 28th (2002), s 4, § 2, 184.
- 14.
“La déclaration ne peut être prise en compte que si elle a été établie ou confirmée moins de cinq ans avant le début de l’impossibilité de manifester sa volonté.” Belgium, The Belgian Act on Euthanasia of May, 28th (2002), s 4, § 1, 183.
- 15.
Luxembourg Euthanasia and Assisted Suicide: Law of 16 March (2009), art 2.1, 37.
- 16.
Ibid., art 4(1).
- 17.
Luxembourg Ministries of Health and Social Security 2010, 20. Note the difference here between the Belgian and Luxembourgian requirements. In Belgium, the advance directive must have been made at least five years before the start of the incapacity. In Luxembourg, that restriction is not present. As long as the patient is competent, she can create a valid advance directive.
- 18.
Switzerland, Swiss Criminal Code, SR 311.0, art 115 (1937, amended 2015).
- 19.
Oregon, Death with Dignity Act (1997).
- 20.
Washington State, Death with Dignity Act (2009).
- 21.
Vermont, An Act Relating to Patient Choice and Control at End of Life (2013).
- 22.
Baxter v Montana (2009).
- 23.
Morris v New Mexico (2014).
- 24.
Exhibit D referred to in the Affidavit of Sabine Michalowski sworn (or affirmed) 20 September 2011 in Carter v Canada (2012).
- 25.
The majority of the Court did not address the constitutionality of the assisted suicide provision. (“Incitement to suicide or assisted suicide. He who effectively incites another person to commit suicide, or provides effective assistance for its commission, will be punished with imprisonment of two to six years. The incitement or assistance are directed towards putting an end to intense suffering caused by physical injuries or grave or incurable illness, it will be punished with imprisonment of one to two years.”) Michalowski (2009, 197).
- 26.
Statement made by Carlos Gaviria Diaz (author of the majority decision), May 20, 1997, Exhibit F, Affidavit of Sabine Michalowski, supra note 24.
- 27.
For a rich discussion of the law in Colombia, see Michalowski (2009).
- 28.
Director of Public Prosecutions, England and Wales (2010)
- 29.
Criminal Code (1985).
- 30.
Section 3: “(3) ‘End-of-life care’ means palliative care provided to end-of-life patients and medical aid in dying.” “(6) ‘Medical aid in dying’ means care consisting in the administration by a physician of medications or substances to an end-of-life patient, at the patient’s request, in order to relive their suffering by hastening death.” Section 4: “Every person whose condition requires it has the right to receive end-of-life care.” An Act Respecting End-of-Life Care (2014), ss 3–4.
- 31.
lbid., s 51.
- 32.
See collection of Regional Euthanasia Review Committees Annual Reports available online at http://www.euthanasiecommissie.nl/archiefjaarverslagen.asp.
- 33.
For a review of pain assessment tools for persons with dementia, see Lichtner et al. (2014).
- 34.
Bill C-581 (2014).
- 35.
Ibid., s 3 [creating s. 241.1(9)].
- 36.
Ibid., s 3 [creating s. 241.1(3)(c)].
- 37.
Ibid., s 3 [creating s. 241.1(3)(d)].
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Downie, J., Lloyd-Smith, G. (2015). Assisted Dying for Individuals with Dementia: Challenges for Translating Ethical Positions into Law. In: Cholbi, M., Varelius, J. (eds) New Directions in the Ethics of Assisted Suicide and Euthanasia. International Library of Ethics, Law, and the New Medicine, vol 64. Springer, Cham. https://doi.org/10.1007/978-3-319-22050-5_7
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