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Abstract
Dementia patients in the moderate-late stage of the disease can, and often do, express different preferences than they did at the onset of their condition. The received view in the philosophical literature argues that advance directives which prioritize the patient’s preferences at onset ought to be given decisive moral weight in medical decision-making. Clinical practice, on the other hand, favors giving moral weight to the preferences expressed by dementia patients after onset. The purpose of this article is to show that the received view in the philosophical literature is inadequate and is out of touch with real clinical practice. I argue that having dementia is a cognitive transformative experience and that preference changes which result from this are legitimate and ought to be given moral weight in medical decision-making. This argument ought to encourage us to reduce our confidence in the moral weight of advance directives for dementia patients.
ACKNOWLEDGEMENTS
This publication would not be possible without the support of my incredible mentor at McGill university, Ian Gold. I am also exceptionally grateful to the following people for providing me with kind and constructive comments at various stages of writing this article: Daniel Harris, Helen Ryland, Kristin Voigt, Matilde Aliffi, Matthew Parrott, Merten Reglitz, Michael Rush, and to all of the anonymous reviewers of this article. Finally, a special thanks is owed to all of the members of the Women and Non-Binary People in Philosophy group at the University of Birmingham, for giving me the courage and confidence to believe in myself enough to pursue projects such as this one.
Notes
1 In medical contexts, determining decisional capacity is a part of every substantive interaction between a patient and their physician (Fellows Citation1998). Typically, determining decisional capacity involves a physician making an assessment of a patient’s ability to express, make, and understand the consequences of, a particular decision. This assessment can also be done with regards to a specific task (Moye and Marson Citation2007, 3).
2 Dementia has arbitrarily been divided into three dominant stages: early, mid-stage, and late-stage. Often these stages of the disease blur, but late-stage dementia is characterized by a severity of functional impairments, which cause the patient to require full-time care. In particular, the patient may find themselves easily disorientated, frustrated at their inability to do daily tasks such as clothing and washing themselves, and their perceptions may become distorted or blurred (Wells Citation1977, 5–7).
3 The most common kinds of advance directives are treatment and proxy directives. The former specifies what treatment, if any, the individual would desire in the future, and the latter specifies another person who is empowered to make decisions on the patient’s behalf. Whilst less common, advance directives can also be written for euthanasia (de Boer et al. Citation2010, 202).
4 The right to autonomy in this context refers to the right an individual who has decisional capacity has to make decisions regarding their own medical care.
5 Competency is a legal concept, which is typically informed by a physician’s judgement of decisional capacity. Legal standards for determining competency vary, but such standards usually require that the patient is able to express a choice, to understand the relevant information in making a particular choice, to appreciate the medical consequences of their decision, and to be able to reason properly about their options (Applebaum Citation2007).
6 We can make sense of this distinction if we are careful to pick the right examples. These examples typically contrast an important critical interest with a trivial experiential interest. My previous example of contrasting one’s meaningful relationships with one’s chocolate cake eating is an illustration of this. Given my example, it is reasonable to think that, in ordinary circumstances, one should favour pursuing meaningful relationships over one’s chocolate cake-eating and so critical interests are more important than experiential ones. Nevertheless, the persuasiveness of this distinction can lose credibility when we alter the experiential interest in question. For instance, imagine that we changed the example of the experiential interest to one where an individual experienced acute pain. It isn’t clear in this case that one would think more about one’s relationships than one’s chronic pain.
7 David DeGrazia draws this distinction between three kinds of agency: personhood, selfhood, and subjecthood. one experiences a personhood kind of agency if one has the capacity to think, feel and deliberate, and has full mental capacity. This is the kind of agency most commonly attributed to adult humans (DeGrazia Citation1999, 382). The second stage of agency is ‘selfhood’ (DeGrazia Citation1999, 382). Selves are agents who, unlike persons, may not have higher-order functioning, but do have self-awareness over time. For instance, whilst young children may fall short of hitting the target of the kind of higher order functioning specified in the personhood criteria, we accept that children do have an awareness over time and, thus, can be classified as selves. The final stage of agency is ‘subjecthood.’ One is a subject when one has experiences and has the consciousness necessary to appreciate them (DeGrazia Citation1999, 382–383). For example, you could qualify as a subject if, due to a severe car crash, you had suffered severe cognitive impairments, but you were conscious and still able to feel pleasure.
8 This strategy is also problematic given what the literature on leeway in advance directives informs us. Subjects vary greatly as to how much ‘leeway’ they would give to their surrogate decision maker to override their advance directive. A study on advance directives and dialysis patients illustrates this: 39% of the patients desired to grant ‘no leeway’ to their surrogate, 19% a ‘little leeway’, 11% a ‘lot of leeway’, and 31% ‘complete leeway’ (Sehgal et al 1992). A patient from a different study in the leeway literature nicely captures the concern: “if you have a lot of confidence in the other person to have your best interests at heart, it would be O.K., but that may not always be the case, even with a relative” (Fried et al. Citation2013).
9 It is worth noting here that advance directive writing does not necessarily have to be ambiguous. I am merely suggesting that the kinds of advance directives which are currently written tend to be ambiguous and thus often lead to interpretative problems of the nature outlined here.
10 One tentative policy implication, then, is for clinicians and lawyers to actively discourage patients from using ambiguous phrases in the wording of their advance directives. In addition, it could be required that persons who write an advance directive answer both of these aforementioned questions in as much detail as possible.