Directing the End of Life in Dementia

Dildy, Katherine C.; Largent, Emily A.

doi:10.1007/978-3-030-62073-8_5

Cited by 4 publications

(5 citation statements)

References 73 publications

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“…Respecting how a person wants to die is a fundamental human and moral claim, even for people living and dying with dementia ( 32 ). Advance directives are the most recognized and available tools for protecting the autonomy of people living with dementia by communicating their values and medical care preferences to family members and physicians while they are still able and competent to make decisions ( 33 ).…”

Section: Discussionmentioning

confidence: 99%

Exploring the Motivations for Completing Advance Care Directives: A Qualitative Study of Majority/Minority Israeli People Without Dementia

2022

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BackgroundCompleting advance directives has been declared an essential instrument for preserving and respecting the autonomy and preferences for end-of-life care of people living with dementia. However, research deciphering the reasoning behind the decision to complete or not advance directives in the case of dementia remains limited, especially among people pertaining to different majority/minority groups.ObjectivesTo explore the motivations of people without dementia in Israel to complete or not to complete advance directives and to compare these motivations among the majority veteran Jewish group, the minority Jewish Former Soviet Union immigrant group, and the minority Arab group.MethodsThis qualitative study used purposive sampling and focus groups with discussions elicited by a vignette. A total of 42 Israeli people without dementia participated in 6 focus groups: two with veteran Jews (n = 14), two with Jewish immigrants from the Former Soviet Union (n = 14), and two with Arabs (n = 14). The analysis followed recommended steps for thematic content analysis.ResultsFour overarching themes were identified: (1) the meaning of dementia-related advance directives, (2) motivations for willingness to complete advance directives, (3) motivations for not being willing to complete advance directives, and (4) ethical dilemmas. Some of the themes were common to all groups, while others were informed by the groups' unique characteristics. Participants displayed a lack of knowledge and misunderstanding about advance directives, and central concepts such as autonomy and competence. Furthermore, stigmatic images of dementia and of the person with the diagnosis were associated to participants' motivations to complete advance directives.ConclusionsThere is need to expand comparative research among culturally and socially similar and dissimilar groups within a country as well as between countries in order to better guide public health efforts to increase the rates of advance directives completion. Special attention should be paid to decreasing stigmatic beliefs and understanding unique cultural values and motivations.

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Section: Discussionmentioning

confidence: 99%

Exploring the Motivations for Completing Advance Care Directives: A Qualitative Study of Majority/Minority Israeli People Without Dementia

2022

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“…MAID laws: (1) decisional capacity, (2) the ability to self-administer the life-ending prescription, and (3) a terminal condition with 6 months or less to live. 2 Now, because of recent statutory amendments together with the use of voluntarily stopping eating and drinking (VSED) to quickly advance to a terminal condition, this dementia exclusion from MAID might no longer apply.…”

Section: Introductionmentioning

confidence: 99%

“…But, for over two decades, it has been widely understood by medical providers that these patients cannot (solely because of their dementia diagnosis) satisfy three statutory eligibility requirements in all U.S. MAID laws: (1) decisional capacity, (2) the ability to self‐administer the life‐ending prescription, and (3) a terminal condition with 6 months or less to live 2 . Now, because of recent statutory amendments together with the use of voluntarily stopping eating and drinking (VSED) to quickly advance to a terminal condition, this dementia exclusion from MAID might no longer apply.…”

Section: Introductionmentioning

confidence: 99%

Medical aid in dying to avoid late‐stage dementia

Pope,

Brodoff

2024

J American Geriatrics Society

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Many patients with dementia want the option of using medical aid in dying (MAID) to end their lives before losing decision‐making capacity and other abilities that impact their desired quality of life. But, for over two decades, it has been widely understood that these patients cannot (solely because of their dementia diagnosis) satisfy three statutory eligibility requirements in all U.S. MAID laws: (1) decisional capacity, (2) the ability to self‐administer the life‐ending medications, and (3) a terminal condition with 6 months or less to live. Now, because of recent statutory amendments together with the use of voluntarily stopping eating and drinking (VSED) to quickly advance to a terminal condition, this dementia exclusion from MAID might no longer apply. If combining VSED and MAID is now a possibility for patients with dementia, then clinicians need more guidance on whether and when to support patients seeking to take this path. In this article, we begin to provide this guidance. First, we describe the recent case of an Oregon patient with early‐stage Alzheimer's dementia who successfully used VSED to qualify for and use MAID. Second, we discuss prior barriers to using VSED as a bridge to MAID for people with dementia. Third, we describe recent legal changes that might make this path now possible.

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“…Despite the potential benefits, implementing ACP in AD presents a range of special challenges in China. These may include lack of legislative protection, lack of awareness of ACP, ambiguity in planning for the unknown future [ 14 ], and, for caregivers, reconciling the apparent desire or best interests of dementia patients with previously expressed preferences [ 15 ]. Therefore, the prerequisite for the practice of ACP in China is to popularize people’s awareness of ACP and understand their intentions towards ACP, which is still insufficient in China.…”

Section: Introductionmentioning

confidence: 99%

The perspectives of family caregivers of people with Alzheimer´s disease regarding advance care planning in China: a qualitative research

et al. 2022

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Objectives Advance care planning (ACP) enables people to define goals and preferences for future medical treatment and care. Despite universal recognition of the importance of ACP for people with Alzheimer´s disease (AD) internationally, there is little support for its implementation in China. The viewpoint of family caregivers is crucial in making clinical decisions about AD. Therefore, it’s critical to understand the family caregivers’ perspectives on ACP in order to promote its practice among people with AD in China. Methods Seventeen family caregivers of people with AD were purposively selected in three communities in Guangzhou. Semi-structured interviews were conducted to collect data and the data were analyzed using the thematic analysis. Results Three main themes were extracted: ①Attitudes toward ACP including positive and negative attitudes; ②Social pressure influencing ACP decision; ③Behavioral willingness of the implementation of ACP. Conclusions Attitudes, social pressure, and behavioral willingness characterized the behavioral intentions of family caregivers of people with Alzheimer’s disease. It is recommended to strengthen efforts to publicity of advance care planning and promote legislation in China.

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Directing the End of Life in Dementia

Cited by 4 publications

References 73 publications

Exploring the Motivations for Completing Advance Care Directives: A Qualitative Study of Majority/Minority Israeli People Without Dementia

Exploring the Motivations for Completing Advance Care Directives: A Qualitative Study of Majority/Minority Israeli People Without Dementia

Medical aid in dying to avoid late‐stage dementia

The perspectives of family caregivers of people with Alzheimer´s disease regarding advance care planning in China: a qualitative research

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