scholarly journals END-OF-LIFE FEASIBILITY AND EFFICACY OF A PILOT INTERVENTION TO INCREASE ADVANCE CARE PLANNING AMONG AFRICAN AMERICANS

2015 ◽  
Vol 55 (Suppl_2) ◽  
pp. 226-226
2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S404-S405
Author(s):  
Rebecca S Allen ◽  
Pamela Payne-Foster ◽  
JoAnn S Oliver ◽  
Christopher H Spencer ◽  
Deanne M Dragan

Abstract Sharing Opinions and Advice about Research (Project SOAR), funded by PCORI, trained individuals living in under-resourced and underserved communities how to evaluate and provide advice to scientists about recruitment procedures, survey items, and intervention components for implementation in their communities. In partnership with the HELLO Project (Van Scoy, Green, & Volpe, 2019), Project SOAR community partners recruited 50 rural African American adults to consider their values, plans, and treatment preferences near the end of life while playing the HELLO game. Community and research partners along with a HELLO Project representative facilitated questionnaire completion and the process of the HELLO game to promote advance care planning. Tables of 10 participants held facilitated discussions for each HELLO game item and recorded their individual wishes and plans in HELLO booklets. Community participants had difficulty completing questionnaires without assistance; however, all were engaged and accepting of game-like discussions regarding advance care planning.


2020 ◽  
pp. 104365962096078
Author(s):  
John W. Collins ◽  
Rick Zoucha ◽  
Joan Such Lockhart ◽  
Sandra J. Mixer

Introduction: Advance directive completion rates among the general population are low, with even lower completion rates among African Americans (AAs). This study’s purpose was to identify culturally based meanings, expressions, and traditions of end-of-life (EOL) advance care planning (ACP) and decision making in order to promote culturally congruent nursing care among African Americans. Methodology: Leininger’s Culture Care Theory and Ethnonursing Research Method guided the study. A convenience sample of 21 informants were interviewed in community settings. Data analysis was guided using Leininger’s phases of ethnonursing data analysis for qualitative data. Results: Three themes emerged that affect EOL decision making: (a) faith in God and belief in life after death, (b) a strong matriarchal family structure, and (c) fear of talking about death and mistrust of the U.S. health care system. Discussion: AA culture, beliefs, and traditions influence EOL ACP and practices, and must be considered while providing culturally congruent care.


2016 ◽  
Vol 34 (6) ◽  
pp. 510-517 ◽  
Author(s):  
Ramona L. Rhodes ◽  
Bryan Elwood ◽  
Simon C. Lee ◽  
Jasmin A. Tiro ◽  
Ethan A. Halm ◽  
...  

Background: Studies have identified racial differences in advance care planning and use of hospice for care at the end of life. Multiple reasons for underuse among African American patients and their families have been proposed and deserve further exploration. Objective: The goal of this study was to examine perceptions of advance care planning, palliative care, and hospice among a diverse sample of African Americans with varying degrees of personal and professional experience with end-of-life care and use these responses to inform a culturally sensitive intervention to promote awareness of these options. Methods: Semistructured interviews and focus groups were conducted with African Americans who had varying degrees of experience and exposure to end-of-life care both personally and professionally. We conducted in-depth qualitative analyses of these interviews and focus group transcripts and determined that thematic saturation had been achieved. Results: Several themes emerged. Participants felt that advance care planning, palliative care, and hospice can be beneficial to African American patients and their families but identified specific barriers to completion of advance directives and hospice enrollment, including lack of knowledge, fear that these measures may hasten death or cause providers to deliver inadequate care, and perceived conflict with patients’ faith and religious beliefs. Providers described approaches they use to address these barriers in their practices. Conclusion: Findings, which are consistent with and further elucidate those identified from previous research, will inform design of a culturally sensitive intervention to increase awareness and understanding of advance care planning, palliative care, and hospice among members of the African American community.


Author(s):  
Simon Chapman ◽  
Ben Lobo

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.


2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 417-418
Author(s):  
Hyo Jung Lee ◽  
Giyeon Kim

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.


2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 472-472
Author(s):  
Jenny McDonnell

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.


2017 ◽  
Vol 10 (2) ◽  
pp. e12-e12 ◽  
Author(s):  
Alexandra C Malyon ◽  
Julia R Forman ◽  
Jonathan P Fuld ◽  
Zoë Fritz

ObjectiveTo determine whether discussion and documentation of decisions about future care was improved following the introduction of a new approach to recording treatment decisions: the Universal Form of Treatment Options (UFTO).MethodsRetrospective review of the medical records of patients who died within 90 days of admission to oncology or respiratory medicine wards over two 3-month periods, preimplementation and postimplementation of the UFTO. A sample size of 70 per group was required to provide 80% power to observe a change from 15% to 35% in discussion or documentation of advance care planning (ACP), using a two-sided test at the 5% significance level.ResultsOn the oncology ward, introduction of the UFTO was associated with a statistically significant increase in cardiopulmonary resuscitation decisions documented for patients (pre-UFTO 52% to post-UFTO 77%, p=0.01) and an increase in discussions regarding ACP (pre-UFTO 27%, post-UFTO 49%, p=0.03). There were no demonstrable changes in practice on the respiratory ward. Only one patient came into hospital with a formal ACP document.ConclusionsDespite patients’ proximity to the end-of-life, there was limited documentation of ACP and almost no evidence of formalised ACP. The introduction of the UFTO was associated with a change in practice on the oncology ward but this was not observed for respiratory patients. A new approach to recording treatment decisions may contribute to improving discussion and documentation about future care but further work is needed to ensure that all patients’ preferences for treatment and care at the end-of-life are known.


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