Advance Directives and the Severely Demented

Abstract

Should advance directives (ADs) such as living wills be employed to direct the care of the severely demented? In considering this question, I focus primarily on the claims of Rebecca Dresser who objects in principle to the use of ADs in this context. Dresser has persuasively argued that ADs are both theoretically incoherent and ethically dangerous. She proceeds to advocate a Best Interest Standard as the best way for deciding when and how the demented ought to be treated. I put forth a compromise position: both ADs and the Best Interest Standard have roles to play in guiding the care of the severely demented.

Advance care planning in dementia: recommendations for healthcare professionals

“…The disease trajectory is not always predictable and the emotional burden on those close to the person with dementia can often lead to a certain amount of confusion and lack of clarity about providing care. When end-of-life decisions need to be made, it is important to weigh carefully the wishes expressed and/or written down earlier against the current best interest of the person living with dementia, in consultation with the person’s close circle and the healthcare professionals involved [ 84 , 90 , 91 ]. End-of-life decision-making entails shared decision-making and as much consensus amongst healthcare providers and those close to the person as possible [ 84 , 90 , 91 ].…”

“…values, preferences and care goals, and if applicable advance directives or legal representatives, especially in the case of transfer to another care setting. NA* Domain 7 End-of-life decision-making 30 Carefully weigh the wishes (expressed and/or written down earlier) against the current best interest of the person living with dementia, in consultation with those close to them and the healthcare professionals involved [ 83 , 89 , 90 ] 1C Domain 8 Preconditions for optimal implementation of ACP 31 Provide enough training opportunities for healthcare professionals to learn how to conduct ACP conversations. Adequate support is essential in making healthcare professionals confident about engaging in ACP [ 11 , 17 , 26 , 94 , 114] 1C 32 Integrate ACP into the mission and policy of the organization and embed it in the organizational culture [ 62 , 91 , 95 – 97 ] [ 61 , 96 – 98 ] [ 62 , 96 – 98 ] 1C NA Not applicable, ACP Advance care planning a Recommendations without references were added only by the experts and end users during the consensus procedure b Grading scores go from 1A to 2B, 1A representing a strong recommendation, based on a high level of evidence and 2C representing a weak recommendation and low to very low level of evidence.…”

The full spectrum of ethical issues in dementia care: systematic qualitative review

“…. Adequate handling of 'best interest' and 'substituted judgements' decisions [2][3][4]6,12,14,17,35,40,51,52,55,[64][65][66][67][68][69][70][71] . Inadequate communication with relatives 2,3,6,14,26,37,39,[72][73][74][75][76][77][78] .…”

“…Challenges in interpreting the living will/advance directive 3,6,41,53,60,66,70,80 . Challenges in deciding to follow or not to follow the content of the living will/advance directive 2,4,14,35,53,66,67,70 5 Social and context-dependent aspects . Caring for relatives 2,3,4,6,14,18,30,31,76,77,[81][82][83] .…”

Proxy decision making and dementia: Using Construal Level Theory to analyse the thoughts of decision makers

“…The dilemma here is which aspect of the self should be reflected in decision making (Jaworska, 2007;Koppelman, 2002;Post, 1995). Interests are critical (relating to living a good life and are achievable in the past or future) or experiential (relating to quality of life and are time sensitive) (Dresser, 1995;Dworkin, 1993;Harvey, 2006;Holm, 2001;Jaworska, 1999;Nelson, 1995Nelson, , 2009Nys, 2013). Desires are dispositional (reflecting past views and behaviours) or actual (reflecting present feelings) (Holm, 2001;Hope et al, 2009).…”