Decision-making on behalf of people living with dementia: how do surrogate decision-makers decide?

Abstract

Surrogate decision-making on behalf of a person living with dementia is often a difficult process. Advance care planning can play an important role in supporting this process. Healthcare professionals can recognise the challenges that surrogate decision-makers face and support them through advance care planning in a way that suits their needs and circumstances.

Informed consent, therapeutic misconception, and clinical trials for Alzheimer's disease

“…To guide surrogate decision makers, there is a commonly accepted hierarchy of standards for proxy decisions: (a) explicitly stated wishes of the person (eg, advance directives); if wishes are unknown, then (b) substituted judgment (eg, what the person would have chosen if capable based on the person's values, beliefs, and past decisions); if the surrogate is not able to make a substituted judgment as preferences are unknown, then (c) best interests (eg, what appears to maximize benefit for the person) . When confronted with decisions for a person with dementia such as stopping driving, moving into long‐term care, and end‐of‐life care, it appears that surrogate decision makers aim to strike a balance between respecting the perceived wishes of the person with dementia (eg, substituted judgment) and providing for the best interests of the person given the current state of disease progression . It has also been shown that when making medical decisions for a person with advanced dementia, surrogate decision makers preferentially use a best interests standard (57% of respondents) or see no difference between substituted judgment and best interests standards (37% of respondents) …”

“…24,25 When confronted with decisions for a person with dementia such as stopping driving, moving into long-term care, and end-of-life care, it appears that surrogate decision makers aim to strike a balance between respecting the perceived wishes of the person with dementia (eg, substituted judgment) and providing for the best interests of the person given the current state of disease progression. 26 It has also been shown that when making medical decisions for a person with advanced dementia, surrogate decision makers preferentially use a best interests standard (57% of respondents) or see no difference between substituted judgment and best interests standards (37% of respondents). 27 In focusing more on the decision to enroll in clinical trials for Alzheimer's disease, it appears that there is similarly a complex interplay between substituted judgment and best interests standards.…”

Providing support to surrogate decision-makers for people living with dementia: Healthcare professional, organisational and community responsibilities

“…While there has been considerable research on surrogate decision‐making in general, there has been comparatively little research dedicated to the special circumstances of people living with dementia. Our recent research suggested that advance care planning and health professional support can play important roles in supporting surrogate decision‐makers when making important decisions (Fetherstonhaugh, McAuliffe, Bauer, & Shanley, ). However, the focus of this current paper was to explore decision‐making support needs more directly from the perspective of the surrogate decision‐maker.…”

Should the deceased be listed as authors?

“…We cannot deal with any of these general problems here. Suffice it to say that the epistemological situation is more promising in the context we discuss compared with many situations in healthcare,14 since it is quite likely that research collaborators know each other’s views on how to do research and handle authorship issues fairly well.…”