Abstract
Barack Obama became the first US President to announce publicly that he had a living will (also known as an advance directive), and he encouraged his fellow Americans to do the same. On July 28, 2009, he spoke the following words at a town hall meeting: “So I actually think it’s a good idea to have a living will. I’d encourage everybody to get one. I have one; Michelle has one. And we hope we don’t have to use it for a long time, but I think it’s something that is sensible.”
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Notes
- 1.
Conolly, Ceci. “Obama takes personal approach in AARP speech,” The Washington Post, July 29, 2009.
- 2.
Advance directive is also known as a living will or directive. As noted, while “advance directive” is not a term used in Ontario, I use it here to encompass the wishes of the patient regarding future healthcare, which could be captured verbally, or in writing in a power of attorney or other document. It will be important for readers to know the terms used in their own jurisdictions; and to understand whom the wishes guide – whether they are to be interpreted by a substitute decision-maker (substitute, proxy or other term), or whether a health practitioner may act directly on the wish.
- 3.
The concept of the living will became enshrined in US legislation in the 1990s following the high profile cases of Karen Quinlan and Nancy Cruzan. Jane Seymour and Gillian Horne, “Advance Care Planning for the end of life: an overview” in Advance Care Planning in End of Life Care, ed. Keri Thomas and Ben Lobo (Oxford: Oxford University Press, 2011), 18.
- 4.
Specific laws pertaining to advance directives and powers of attorney may and often do differ between these countries and within jurisdictions of each particular country. No formal requirements exist for advance directives or living wills in Ontario - no Ontario statute exists that makes reference to them. Wishes made about future care including treatment can be incorporated into a legal Power of Attorney for Personal Care document that does have formal requirements.
- 5.
These discussions do not occur in a vacuum. Healthcare organizations are complex systems within themselves, and there are always larger social and political factors influencing the kinds of care that can be offered and how that care is distributed. Healthcare policies and guidelines are driven by the organization’s mission, vision, and codes of conduct, and there are many different types of healthcare personnel involved in decision-making and the delivery of care.
- 6.
This right is encoded in democratic legislation. For example, see Ontario’s Health Care Consent Act, 1996, S.O. c.2, s. A., p.1.4. Additionally, please note that while the term adopted is “capable” per the Ontario legislation, the term competent may also be used and is interchangeable unless otherwise noted.
- 7.
Alfred Simon, “Historical Review of Advance Directives,” in Advance Directives, ed. Peter Lack, Nikola Biller-Andorno and Susanne Brauer (Springer Press New York, 2014), 3. However, there are some limitations to this kind of autonomous freedom we speak about. For one thing, patients have no right to receive absolutely any treatment they wish. The healthcare practitioners have no duty to provide an ineffective treatment and also have a duty to not do harm. See J.M. Atkinson, Advance Directives in Mental Health: Theory, Practice and Ethics (London: Jessica Kingsley Publishers, 2007): 74.
- 8.
While all dementias have some commonality, I am restricting my focus to only dementia of the Alzheimer’s type, the most common one.
- 9.
Many people designate an SDM to speak on their behalf, regardless of whether or not they have an advance directive. In Ontario the legal term for such a person is attorney for personal care. If there is no legal attorney for personal care, then in Ontario there is a hierarchical ranking of persons from which a selection is identified, eligible to fulfill that role. The designation of SDM is used in these circumstances. However, for simplicity’s sake, I will use the term SDM to refer as well to the attorney for personal care.
- 10.
The term treatment wishes is used both to denote treatments the author of the directive wishes to receive and treatments the author wishes to refuse in the future.
- 11.
Assuming that you were deemed capable at the time you wrote your advance directive.
- 12.
Later I will broaden the scope to include the larger network of family and professional staff when considering the benefits and burdens of having an advance directive.
- 13.
Simon,11
- 14.
Robert Olick, “On the Scope and Limits of Advance Directives and Prospective Autonomy,” Advance Directives, ed. Peter Lack, Nikola Biller-Andorno, and Susanne Brauer (New York: Springer, 2014) 67. Olick considers the situation when there has been a “radical change in circumstances from those previously contemplated by the patient” and asserts the argument that there would be justified reason to override the patient’s directive previously requesting refusal of treatment.
- 15.
Simon,12
- 16.
Carmelo Aquilina and Julian C. Hughes, “The Return of the Living Dead: Agency Lost and Found?” in Dementia: Mind, Meaning, and the Person, ed. Julian C. Hughes, Stephen J. Louw, and Steven R. Sabat (Oxford: Oxford University Press, 2006), 143. Also see Herskovits who speaks of the concept of Alzheimer’s disease as a “monsterizing of senility.” Elizabeth Herskovits, “Struggling over Subjectivity: Debates about the ‘Self’ and Alzheimer’s Disease,” Medical Anthropology Quarterly 9, no. 2(1995): 153.
- 17.
Prominent theorist Rebecca Dresser supports the argument that memory loss contributes to a loss of self in patients with severe dementia. See Rebecca Dresser, “Dworkin on Dementia: Elegant Theory, Questionable Policy,” Hastings Centre Report 25, no. 6 (1995): 35.
- 18.
L.K. Fellows, “Competency and Consent in Dementia,” Journal of American Geriatrics Society 46, no.7 (1998): 922.
- 19.
Steven R. Sabat, “Capacity for Decision-Making in Alzheimer’s Disease: Selfhood, Positioning and Semiotic People,” Australian and New Zealand Journal of Psychiatry 39, no. 11-12 (Nov 2005): 1030.
- 20.
Pam Sailors, “Autonomy, Benevolence, and Alzheimer’s Disease,” Cambridge Quarterly of Healthcare Ethics 10 (2001): 184.
- 21.
F. Baylis, J. Downie, B. Hoffmaster, S. Sherwin, ed., Health Care Ethics in Canada, 2nd ed. (Toronto: Nelson, 2004), 7. “Autonomy” and “respect for autonomy” are terms loosely associated with several ideas, such as privacy, voluntariness, self-mastery, choosing freely, choosing one’s own moral position, and accepting responsibility for one’s choices.
- 22.
T.I. Beauchamp and J.F. Childress, Principles of Biomedical Ethics (New York: Oxford University Press, 2001): 121. Also see Susan Dodds, “Choice and Control in Feminist Bioethics,” in Relational Autonomy: Feminist Perspectives on Autonomy, Agency and the Social Self, ed. Catriona Mackenzie and Natalie Stoljar (Oxford University Press US, 2000), 215.
- 23.
There is however much controversy among bioethicists today about the justification of its elevated status. As referred to earlier, the privileged role that autonomy holds today in healthcare ethics is also understood as a backlash against what is perceived to be a largely paternalistic model of medical decision-making of the past where doctors and other healthcare providers are deemed to be the experts who generally made the decisions themselves according to their patients’ best interests (as they perceived them to be).
- 24.
I strongly prefer the latter.
- 25.
This is a big problem because they are excluded a priori.
- 26.
Fellows, 925
- 27.
It makes sense to me to understand autonomy as being relational. Our sense of self is relational in that we are who we are, in part because of our relations with others (whose identities we play a role in shaping); when we make decisions, we consider others, and others also shape our decisions.
- 28.
Dodds, 213
- 29.
Ontario’s Health Care Consent Act, 1996, S.O. c. 2, s. A., p. 1.4 provides the legal minimum standard that must be met.
- 30.
It is the critical opinion of some philosophers and ethicists, notably particular feminist theorists and practitioners, that the term “conflated” is a more accurate depiction of the relationship between autonomy and informed consent. For example, see Mackenzie, 5; Dodds, 225. These critics assert that the concept of autonomy has been too narrowly construed in its scope of meaning and application. Proponents of relational autonomy often make this claim.
- 31.
See Ontario’s Health Care Consent Act, 1996, S.O. c. 2, s. A., p. 1.4.
- 32.
In Ontario, autonomous decision-making or capacity is time and domain specific. This means that a person can be considered to be capable of autonomous decision-making in one area, but not necessarily in another, and at one specific time, but not necessarily at another time.
- 33.
When I refer to the phrase “partaking in medical decision-making,” I am referring to a larger view than what the legal construct allows for. I believe many people with dementia can still participate in the process of medical decision-making by having their values and interests inform decision-making.
- 34.
Stephen G. Post, “Respectare: Moral Respect for the Lives of the Deeply Forgetful,” in Dementia: Mind, Meaning and the Person, ed. Julian C. Hughes, Stephen J. Louw and Steven R. Sabat (Oxford: Oxford University Press, 2006), 223.
- 35.
My suggestion is more aligned with the principle of autonomy , which is the standard that the Ontario laws surrounding informed consent are supposed to be applicable to. However, the clinical practice requirement that a capacity threshold be set in (positive) relation to a risk level suggests to me that a protection (best interest or welfare) standard is being used. In fact, it appears to me that, in reality, the practice of informed consent in healthcare organizations is based upon both these principles. While I am addressing informed consent only in relation to autonomy at this point, it will soon become evident that there are many shortcomings that arise when we (mis)understand autonomy to be the trumping principle. For further insights regarding the relationship between informed consent and well-being, see Angus Dawson, “Informed Consent: should we really insist upon it?” New Review of Bioethics 1, no. 1(Nov 2003): 64.
- 36.
See S. Sherwin for further discussion on social and relational competence. Susan Sherwin, “A Relational Approach to Autonomy in Health Care” in Health Care Ethics in Canada, ed. F. Baylis, J. Downie, B. Hoffmaster and S. Sherwin (Toronto: Nelson Press, 2nd ed., 2004): 192-208. In addition, Agnieszka Jaworska refers to current findings in neurophysiology and in the neuropathology of Alzheimer’s disease to defend the idea that valuing may be quite independent of grasping the narrative of one’s life. The disease most severely affects the hippocampus, an area of the brain indispensable for maintaining the sense of one’s life as a whole, but not particularly important for the ability to value. Other areas of the brain are mainly responsible for reasoning and decision-making processes, particularly related to feelings and emotions and personal and social matters. A person’s ability to value would be more likely to be compromised if these regions were damaged, which happens on an inconsistent basis and in more severe stages. She claims that some but not all of one’s former values would likely be lost in the moderate stage. Agnieszka Jaworska, “Respecting the Margins of Agency: Alzheimer’s Patients and the Capacity to Value,” Philosophy and Public Affairs 28, no. 2 (Spring 1999): 121-122.
- 37.
See Ralf Jox, “Revocation of Advance Directives,” In Advance Directives, ed. Peter Lack, Nikola Biller-Andorno and Susanne Brauer (New York: Springer, 2014) 74. He asserts that the principle of respect for autonomy requires that every attempt must be made in order to enhance an individual’s decision-making capacity.
- 38.
While in Ontario advance directives (the term I use with caveats above, i.e. “wishes”) are not conceptualized to meet the standard of informed consent, I explain on page 18 why I undertake this determination.
- 39.
Post, 229. Also see Olick, 58. He states that “A physician determination of incapacity triggers the authority of the healthcare proxy, but for patients who are interactive, with some capacity for reasoning, this should not categorically exclude them from the decision process…and respect for autonomy encompasses enhancing opportunities for patients to make their own decisions.”
- 40.
R. Olick, 55
- 41.
In general use, the term autonomy refers to and is interchangeable with the term contemporaneous autonomy.
- 42.
R. Olick, 55. “The oft-recited legal principle grounding advance directive laws is that incompetent patients have the same rights of self-determination as competent patients. Only the means for exercising these important rights should differ.”
- 43.
Ibid, 56. Here Olick states “…the importance of future oriented plans and commitments for how we die (or the legacy we leave our families) survives loss of capacity to appreciate whether those plans and commitments are respected. It still matters whether our wishes, values and decisions near the end of life are honored or disregarded, even if we can no longer know what decisions are taken by our proxy, family and physician.”
- 44.
For a fuller understanding of these issues, see Angus Dawson, “Advance Directives,” General Practice and Ethics, ed. Christopher Dowrich and Lucy Frith (London: Rutledge, 1999) 130-171; Christopher James Ryan, “Betting your life: an argument against certain advance directives,” Journal of Medical Ethics 22, no. 6 (1996): 96-99.
- 45.
For example, see Ontario’s Substitute Decisions Act, 1992, S.O. c. 30, p. II. Some jurisdictions use the term “proxy” instead of “substitute decision-maker”.
- 46.
See Ontario’s Health Care Consent Act, 1996, S.O. c. 2, s. A, p. 59.
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Sokolowski, M. (2018). Introduction. In: Dementia and the Advance Directive. Springer, Cham. https://doi.org/10.1007/978-3-319-72083-8_1
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