Advance care planning for older people: The influence of ethnicity, religiosity, spirituality and health literacy

Vries, Kay de; Banister, Elizabeth; Dening, Karen Harrison; Ochieng, Bertha

doi:10.1177/0969733019833130

Cited by 56 publications

(49 citation statements)

References 71 publications

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“…Across a number of countries where is ACP is promoted, ethnic minority people's ACP readiness is generally low [46]: approximately 8-10% in Europe [4], 10-15% in Australia [47], and 10% or below in Asian countries. With a growing interest in the profound cultural influence on EOL decision-making [48], older, frail, and ethnic minority groups' ACP readiness is low, due to low access to palliative care.…”

Section: Influence Of a Collectivistic Culture And Family Decision-making On Acp Readinessmentioning

confidence: 99%

Exploring Behavioral Readiness and Program Strategies to Engage Older Community Residents in Advance Care Planning: A Pilot Mixed-Method Study in Taiwan

Chan

Tseng

et al. 2020

IJERPH

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Taiwan was the first Asian country to endorse patient autonomy, and advance care planning (ACP) has been highly promoted to improve quality of end-of-life (EOL). A mixed-methods pilot survey was conducted in northwestern Taiwan to investigate older community-dwelling residents’ (N = 52) ACP behavioral engagement, socio-demographical correlates, and their preferred intervention strategies. An interview subset (25%, N = 13) was purposely chosen for in-depth feedback and rationales behind their ACP decision-making. Rich information was obtained about perceived facilitators and inhibitors to initiate ACP and preferred intervention strategies in ACP programs. Consistent with previous literature, carefully designed ACP programs that incorporated family decision-making and met older subjects’ multiple needs would increase program acceptability and foster ACP engagement among older Taiwanese in the community setting.

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Section: Influence Of a Collectivistic Culture And Family Decision-making On Acp Readinessmentioning

confidence: 99%

Exploring Behavioral Readiness and Program Strategies to Engage Older Community Residents in Advance Care Planning: A Pilot Mixed-Method Study in Taiwan

Chan

Tseng

et al. 2020

IJERPH

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“…37 Besides the religion, cultural and spiritual influence, HL is also critical to EOL decision-making. 38 LHL may hinder one's abilities to comprehend EOL terms and care options, to actively engage in patient-provider communities, and/or to express one's decisions so that the care received is concordant with his/her preferences. 39 Indeed, evidence has demonstrated that HHL has positive impact on hospice knowledge, attitude and decisionmaking.…”

Section: Discussionmentioning

confidence: 99%

Associations Between Health Literacy and End-of-Life Care Intensity Among Medicare Beneficiaries

Luo

Shi

Hung

et al. 2021

Am J Hosp Palliat Care

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Background: Despite well-documented disparities in end-of-life (EOL) care, little is known about whether patients with low health literacy (LHL) received aggressive EOL care. Objective: This study examined the association between health literacy (HL) and EOL care intensity among Medicare beneficiaries. Method: We conducted a retrospective analysis of Medicare fee-for-service decedents who died in July-December, 2011. ZIP-code-level HL scores were estimated from the 2010-2011 Health Literacy Data Map, where a score of 225 or lower was defined as LHL. Aggressive EOL care measures included repeated hospitalizations within the last 30 days of life, no hospice enrollment within the last 6 months of life, in-hospital death, and any of above. Using hierarchical generalized linear models, we examined the association between HL and aggressive EOL care. Results: Of 649,556 decedents, the proportion of decedents who received any aggressive EOL care among those in LHL areas was 82.7%, compared to 72.7% in HHL areas. In multivariable analyses, decedents residing in LHL areas, compared to those in HHL areas, had 31% higher odds of aggressive EOL care (adjusted odds ratio [AOR] 1.31; 95% confidence interval [CI]:1.21-1.42), including higher odds of no hospice use (AOR 1.35; 95% CI: 1.27-1.44), repeated hospitalization (AOR 1.07; 95% CI: 1.01-1.14) and in-hospital death (AOR 1.21; 95% CI: 1.13-1.29). Conclusion: Medicare beneficiaries who resided in LHL areas were likely to receive aggressive EOL care. Tailored efforts to improve HL and facilitate patient-provider communications in LHL areas could reduce EOL care intensity.

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“…Notwithstanding, it is important to note that our study participants comprised only Japanese people. It has been shown that cultural, ethnic, and religious differences may influence one's sense of comfort when talking about death, treatment preferences, and knowledge about end‐of‐life care (Ohr et al, 2017; de Vries et al, 2019). Particularly, Asian older people often feel uncomfortable when talking about death, and older Japanese people tend to focus on maintaining their current lifestyles (Hirakawa et al, 2017; Ohr et al, 2017).…”

Section: Discussionmentioning

confidence: 99%

Realization and personalization by facing fatality: A grounded theory of developing the view of dying in people with heart failure

Nishikawa

Sato

Mizuno

et al. 2021

Journal of Advanced Nursing

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Aim To explore how people with heart failure develop and change their views of dying and death. Design A Straussian grounded theory approach. Methods Purposive and theoretical sampling were used. Data collection and analysis were repeated until reaching data saturation using the constant comparative method. We conducted semi‐structured interviews between January 2019 and July 2020 with 24 people with heart failure from a university and a community hospital in Japan. Results Initially, participants’ views of dying and death were unrelated to their disease. After the first turning point, namely the confirmation of the deterioration and incurability of the disease, their views became related to their own disease, adding to the suffering caused by the exacerbated symptoms. After the second turning point, namely when participants became tormented by the inevitability of death, they added their struggles with physical, psychological, and spiritual pain owing to medical interventions to their views of dying and death. Only a few participants reached the last stage of this process as it was emotionally distressing; some chose not to proceed to the next stage. Conclusion Participants develop their views of dying and death gradually and in stages while they experience two turning points. Healthcare providers need to address this process while keeping in mind that proceeding this process requires some turning points, and it can be painful. Impact This study provides a theoretical framework on the development of the views regarding dying and death of people with heart failure; it showed that these people need some turning points and to pass through stages to develop/individualize their views, and that this process is inherently distressing. This theory provides a cornerstone for healthcare professionals to understand the disease‐specific transition in views of dying and psychological readiness, and it may help establish a therapeutic relationship that includes advance care planning.

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Advance care planning for older people: The influence of ethnicity, religiosity, spirituality and health literacy

Cited by 56 publications

References 71 publications

Exploring Behavioral Readiness and Program Strategies to Engage Older Community Residents in Advance Care Planning: A Pilot Mixed-Method Study in Taiwan

Exploring Behavioral Readiness and Program Strategies to Engage Older Community Residents in Advance Care Planning: A Pilot Mixed-Method Study in Taiwan

Associations Between Health Literacy and End-of-Life Care Intensity Among Medicare Beneficiaries

Realization and personalization by facing fatality: A grounded theory of developing the view of dying in people with heart failure

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