Unintended Harm? Race Differences in the Relationship Between Advance Care Planning and Psychological Distress at the End of Life

Advance care planning (ACP) conversations about treatment preferences and end-of-life goals relate to positive outcomes for patients and families, though ongoing barriers exist. Additionally, providers personal discomfort and personal experiences may influence how they engage (or avoid) ACP conversations. Narrative medicine (NM) offers one approach to help practitioners develop ability to hear and understand the story of others in ways that may overcome barriers to quality conversations. This study investigated the effectiveness of a 3-hour NM workshop to develop communication skills around ACP and facilitate reflection on the relationship between personal experiences and professional practices in ACP and end-of-life care. Twenty-five participants completed post-assessments of the workshop. Key themes included increased awareness, improved skills for active listening and eliciting stories, and improved understanding of how personal experiences shape professional practice. Results indicate practitioners value the NM approach to ACP suggesting this approach may provide impactful change in practice.

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A Meta-Analysis of the Relationship Between Advance Care Planning and the Care Received at the End of Life Among Patients with Cancer (W205B)

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2021.01.012 ◽

2021 ◽

Vol 61 (3) ◽

pp. 639-640

Author(s):

Kristin Levoy ◽

Suzanne S. Sullivan

Keyword(s):

End Of Life ◽

Advance Care Planning ◽

Meta Analysis ◽

Care Planning ◽

Patients With Cancer ◽

Advance Care ◽

The Relationship

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Advance care planning for adults with a progressive condition approaching end of life or loss of mental capacity: a systematic mapping review of the evidence

10.3310/hsdr-tr-130864 ◽

2020 ◽

Author(s):

Sian Thomas ◽

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Lindsay Claxton ◽

Kath Wright ◽

Alison Eastwood

Keyword(s):

End Of Life ◽

Advance Care Planning ◽

Mental Capacity ◽

Care Planning ◽

Systematic Mapping ◽

Mapping Review ◽

Advance Care ◽

Systematic Mapping Review

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The implications of the Mental Capacity Act (MCA) 2005 for advance care planning and decision making

10.1093/oso/9780198802136.003.0011 ◽

2018 ◽

Author(s):

Simon Chapman ◽

Ben Lobo

Keyword(s):

Decision Making ◽

End Of Life ◽

Advance Care Planning ◽

Care Planning ◽

Best Interest ◽

Policy And Practice ◽

Advance Care ◽

Current Context ◽

Mental Capacity Act ◽

End Of Life Decision

This chapter provides an overview of the MCA’s impact on end-of-life care. It situates the MCA in the current context of policy and practice. It describes how the MCA can be used to improve care, enable people to express and protect choices, and empower and enable the professional and/or the proxy decision maker. It also presents an introduction and explanation of the role of the IMCA and how it might apply to advance care planning (ACP) and end of life decision making, and an explanation of the legal and ethical process involved in reaching best interest decisions, especially for potentially vulnerable people in care homes and other settings.

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Engagement in Advance Care Planning: The Association With Cognitive Impairment and Care Preferences

Innovation in Aging ◽

10.1093/geroni/igaa057.1347 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 417-418

Author(s):

Hyo Jung Lee ◽

Giyeon Kim

Keyword(s):

Older Adults ◽

Cognitive Impairment ◽

Relative Risk ◽

End Of Life ◽

Advance Care Planning ◽

Multinomial Logistic Regression ◽

Quality Care ◽

Care Planning ◽

Advance Care ◽

Four Levels

Abstract Although there has been growing evidence that Advance care planning (ACP) benefits people with cognitive impairment nearing death, our understanding about this issue is still limited. This study examines whether cognitive impairment is associated with ACP engagement and end-of-life care preferences among older adults in the U.S. Using data from the 2012 National Health and Trends Study (n=1798, aged 65 to 101), we identified four levels of ACP engagement: None (28%), Informal ACP conversation only (12%), Formal ACP only (14%), and Both informal and formal ACP (46%). Older adults with None showed the highest prevalence of having cognitive impairment (17%), followed by those with Formal ACP only (15%) and the other two (6%, 6%). The results of Multinomial Logistic Regression showed that, compared to those without, respondents with cognitive impairment had 143% increased relative risk of having None (RR = 2.43, CI: 1.58-3.73) and 81% increased relative risk of completing Formal ACP only (RR = 1.81, CI: 1.11-2.95) relative to completing Both informal and formal ACP. In addition, respondents with None were more likely to prefer to receive all treatments available nearing death than those with any ACP engagement. Achieving high quality care at the end of life can be more challenging for older adults with cognitive impairment and their family caregivers due to the limited capacity. Although encouraged, informal ACP conversation with loved ones does not necessarily occur before the formal ACP, especially, for those with cognitive impairment. Therefore, they may merit more attention such as early ACP engagement.

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Unraveling the Effects of Social Class and Systemic Racism on Advance Care Planning

Innovation in Aging ◽

10.1093/geroni/igaa057.1528 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 472-472

Author(s):

Jenny McDonnell

Keyword(s):

End Of Life ◽

Advance Care Planning ◽

End Of Life Care ◽

Black Americans ◽

Low Ses ◽

Care Planning ◽

Life Care ◽

Black And White ◽

Advance Care ◽

Using Data

Abstract While advance care planning (ACP) is recognized as a key facilitator of high-quality, goal-concordant end-of-life care, black Americans are less likely to participate in ACP than non-Hispanic whites (Carr 2011; Detering et al. 2010). There are divided explanations for why these disparities persist. Some scholars attribute racial disparities in end-of-life care to socioeconomic (SES) differences between black and white Americans citing blacks’ and whites’ differentiated access to, control over, and use of material resources (Wilson 1978; Yearby 2011). Others assert that health care preferences do not solely reflect lack of resources or health literacy, but that the larger social context frames care preferences differently across racial and ethnic groups in American society (Alegria et al. 2011; Sewell and Pingel forthcoming). By turning the analytical lens to class-privileged black Americans, I investigate whether racism overflows the margins of class disadvantage. Using data from the Health and Retirement Study, I ran logistic regression and moderation models. I found that class-privileged blacks are less likely to engage in ACP than both high-SES and low-SES whites. The interaction of race and SES was negatively and significantly associated with ACP (OR=0.91; P<0.05), indicating that SES has a stronger effect on the probability of ACP among whites than among blacks. Predicted probabilities show that 51% of low-SES whites are likely to engage in ACP compared to 32% of high-SES blacks. These findings indicate that racialized disparities in ACP exist independent of SES, and that the effects of SES and race are intersectional rather than simply additive.

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