How Well Do Current Measures Assess the Impact of Advance Care Planning on Concordance Between Patient Preferences for End-of-Life Care and the Care Received: A Methodological Review

Objective: This pilot study set out to evaluate the feasibility and efficacy of an interactive, peer-led, health engagement workshop to improve confidence and comprehension related to advance care planning (ACP) among young adults. Secondarily, this study evaluated if such workshops could promote ACP related behavior changes within this population. Methods: This observational cohort study utilized a repeated measures, mixed-method design. Six hour-long, in-person workshops were conducted with undergraduate students during meetings of university student organizations. Participants were evaluated across 3 mixed-method surveys, evaluating confidence, knowledge, and behaviors related to ACP prior to participation, directly after, and during a 2-week follow-up. Results: Workshop participation improved the average participant confidence and knowledge related to ACP as well as encouraged some participants to engage in discussions related to end-of-life care with friends and family. Alongside the impact of the workshops on knowledge and confidence, participants positively evaluated the design of the workshops through collected qualitative feedback. Conclusion: These results are encouraging in assessing this population’s willingness to learn about end-of-life care planning. The tools developed and the corresponding results should be used for further exploration of engaging the young adult population in ACP to promote improved healthcare outcomes.

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Are patient preferences for end-of-life care socially influenced? Examining racial disparities in advance care planning

Cancer ◽

10.1002/cncr.28969 ◽

2014 ◽

Vol 120 (24) ◽

pp. 3866-3869 ◽

Cited By ~ 5

Author(s):

Fay J. Hlubocky

Keyword(s):

Racial Disparities ◽

End Of Life ◽

Advance Care Planning ◽

Patient Preferences ◽

End Of Life Care ◽

Care Planning ◽

Life Care ◽

Advance Care

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An information model for automated assessment of concordance between advance care preferences and care delivered near the end of life

Journal of the American Medical Informatics Association ◽

10.1093/jamia/ocv149 ◽

2015 ◽

Vol 23 (e1) ◽

pp. e118-e124 ◽

Cited By ~ 5

Author(s):

Marianne Turley ◽

Susan Wang ◽

Di Meng ◽

Michael H Kanter ◽

Terhilda Garrido

Keyword(s):

End Of Life ◽

Advance Care Planning ◽

Patient Preferences ◽

End Of Life Care ◽

Population Level ◽

Information Model ◽

Small Population ◽

Care Planning ◽

Life Care ◽

Advance Care

Abstract Objective To develop an information model for automating evaluation of concordance between patient preferences and end-of-life care. Methods We modeled and validated 15 end-of-life care preference option domains, to which we mapped preferences recorded in standardized advance care planning documents and 232 end-of-life care events defined by procedure and medication codes. Patient preferences and end-of-life care events were available in electronic health records. Data from Kaiser Permanente Southern California modeling and testing populations were evaluated for concordance between patients’ preferences and the end-of-life care events they experienced. Results The information model successfully assessed concordance between patient preferences and end-of-life care events. Among 388 expired patients in the modeling population, 4164 care events occurred, 4100 (98%) of which were preference-concordant, and 64 (2%) of which were preference-discordant. Including end-of-life care events that did not occur increased the number of observations to 6029; 99% were preference-concordant. At the level of individuals, 72% (278) of patients experienced only preference-concordant care events, 13% (50) experienced at least one preference-discordant care event, and 15% (60) experienced no preference-related care events. Discussion Model limitations pertain to assumptions that are required to match advance care planning documents with patient preference options and exclusion of preferred care that did not occur. Further research is required to apply the model to larger populations and to investigate the need for additional preference options. Conclusion An information model for automating the assessment of the concordance between patients’ advance care planning preferences and the end-of-life care they received was effective in a small population and has the potential to assess population-level preference-concordance on an ongoing basis.

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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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