Advance Directives and Discrimination against People with Dementia

Abstract

In the article “On Avoiding Deep Dementia,” Norman Cantor defends a position that I suspect many readers share. In my years writing and speaking on advance directives and dementia, I've found that most people support one of two positions. They are convinced either that advance choices should control the treatment dementia patients receive or that the welfare of a person with dementia should sometimes take priority over earlier choices. As Cantor points out, I support the second position. I agree with several of Cantor's arguments. Where Cantor and I part ways is over the degree of control that advance directives should exert over the care of persons with moderate dementia. Although I don't welcome the prospect of living with dementia, I believe that people with the condition should be represented in the debate over treatment standards. It's not surprising that many, perhaps most, people unaffected by dementia think that their preferences should control the care they would receive as dementia patients. But people taking this position are neglecting the concerns and interests they may have as dementia patients.

Can I Hold That Thought for You? Dementia and Shared Relational Agency

“…Given their limits, then, patients who can relate to the people and objects surrounding them typically have lives that for them are significantly better than no life at all.” 14 For Dresser, someone with dementia experiences significant loss, but what is left may still have great significance for that person. Ignoring those contemporaneous interests in service of an earlier stated preference for care (such as an advance directive) threatens to discriminate against the present person, 15 whose life warrants respect regardless of attendant abilities. Dresser's position centers the present interests of the person with dementia, but does so within a general framework of loss 16…”

Ethics of care challenge to advance directives for dementia patients

“…For instance, Rebecca Dresser has responded to their arguments by demonstrating the tenuous nature of advance directives, which often fail to accurately capture our interests as they evolve over time 11. She has also argued that when we dichotomise the identities of the dementia patient as different selves before and after dementia, advance euthanasia directives risk perpetuating ableist discrimination against post-dementia persons 12. Robertson has made similar arguments about differentiating our interests over time as we enter different stages of our lives.…”

Eudaimonia and well-being: questioning the moral authority of advance directives in dementia

“…3 Accordingly, persons living with dementia, and the lives that they lead, are presented as making little to no contribution to their lives considered as a whole from an earlier eudaimonist perspective; and those lives-the ones considered as a whole from the earlier perspective-are seen to have moral priority over the lives that persons with dementia are currently leading. 4 While Dworkin argues for the moral authority of 'no treatment' stipulations in ADs, such that an infection might be left untreated as a means to limit or foreshorten life, Norman Cantor appeals to a similar eudaimonist perspective to argue for a more pre-emptive approach [9]. He notes that the middle stage of dementia can last quite a while, and during this time there may not be an infection or other call for lifesaving intervention, and hence there may not be an opportunity to enact a 'no treatment' stipulation within a dementia-specific AD.…”

“…Rebecca Dresser and Agnieszka Jaworska have proposed what are now wellknown arguments against Dworkin's position. Dresser argues that dementia-specific ADs should not be regarded as well-informed expressions of a person's will after the onset of dementia, given that prior to dementia onset it is not possible to know how one's values and appreciation of life may change in that event [3,4]. 1 Jaworska disputes Dworkin's characterisation of a person's interests after dementia onset as simply 'in the moment', arguing that one's former capacities for valuing can remain largely intact despite cognitive loss [5].…”

“…As mentioned above, Jaworska has a very different view, which is echoed in Steven Sabat's extensive research on people living with dementia. His research highlights the meaningfulness of their experiences from their own perspective, which is often overlooked or dismissed[13] 4. In characterising persons living with dementia as having experiential interests only, Dworkin rules out the possibility that they could have critical interests.…”