Turning It Over to God: African American Assisted Living Residents’ End-of-Life Preferences and Advance Care Planning

Kemp, Candace L.; Skipper, Antonius; Bender, Alexis A; Perkins, Molly M.

doi:10.1093/geronb/gbad100

Cited by 3 publications

(1 citation statement)

References 35 publications

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“…People are marginalized based on their race, ethnicity, gender identity, sexual orientation, income, geographic location, age, physical ability, language or religious or cultural background [11,12]. Members of marginalized populations, such as minoritized racial and ethnic groups [4,10,[13][14][15][16][17][18], persons in the LGBTQ community [6,7,[19][20][21], and those with low socioeconomic status, health literacy, or low English proficiency [14,[22][23][24][25][26][27][28] engage less in ACP and experience disparities in care. Some researchers have attributed lower rates of ACP among marginalized populations to patient factors such as religiosity, culture, and mistrust [29][30][31][32][33][34].…”

Section: Introductionmentioning

confidence: 99%

Advance care planning as perceived by marginalized populations: Willing to engage and facing obstacles

Izumi,

Garcia,

Kualaau

et al. 2024

PLoS ONE

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Background Health disparities exist in end-of-life (EOL) care. Individuals and communities that are marginalized due to their race, ethnicity, income, geographic location, language, or cultural background experience systemic barriers to access and receive lower quality EOL care. Advance care planning (ACP) prepares patients and their caregivers for EOL decision-making for the purpose of promoting high-quality EOL care. Low engagement in ACP among marginalized populations is thought to have contributed to disparity in EOL care. To advance health equity and deliver care that aligns with the goals and values of each individual, there is a need to improve ACP for marginalized populations. Aim To describe how patients from marginalized populations experience and perceive ACP. Methods We used an interpretive phenomenological approach with semi-structured qualitative interviews. Participants were recruited from four primary care clinics and one nursing home in a US Pacific Northwest city. Thirty patients from marginalized populations with serious illness participated in individual interviews between January and December 2021. Participants were asked to describe their experiences and perceptions about ACP during the interviews. Results The mean age of 30 participants was 69.5; 19 (63%) were women; 12 (40%) identified as Asian/Pacific Islanders, 10 (33%) as Black; and 9 (30%) were non-native English speakers. Our three key findings were: 1) patients from marginalized populations are willing to engage in ACP; 2) there were multiple obstacles to engaging in ACP; and 3) meaningful ACP conversations could happen when clinicians listen. Although participants from marginalized populations were willing to engage in ACP, a fragmented and restrictive healthcare system and clinicians’ biased behaviors or lack of interest in knowing their patients were obstacles. Participants who felt their clinicians took time and listened were encouraged to engage in ACP. Conclusion Patients from marginalized populations are willing to engage in ACP conversations despite a common belief otherwise. However, obstacles to meaningful ACP conversations with healthcare providers exist. Clinicians need to be aware of these obstacles and listen to build trust and engage marginalized patients in mutually meaningful ACP conversations.

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Section: Introductionmentioning

confidence: 99%

Advance care planning as perceived by marginalized populations: Willing to engage and facing obstacles

Izumi,

Garcia,

Kualaau

et al. 2024

PLoS ONE

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Resident and Caregiver Dyads Talk About Death and Dying in Assisted Living: A Typology of Communication Behaviors

Vandenberg,

Bender,

Kemp

et al. 2024

Am J Hosp Palliat Care

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Background In the U.S., assisted living (AL) is increasingly a site of death, and anxiety about dying has been identified in long-term care residents and their caregivers. Communication about death and dying is associated with better quality of life and care at end of life (EOL). Objective To understand communication behaviors used by AL residents and their informal caregivers (i.e., family members or friends) related to death and dying, and address communication needs or opportunities applicable to EOL care in AL. Design A thematic analysis of in-depth interviews and fieldnotes from a subsample of data from a 5-year NIA-funded study. Setting/Subjects Participants included 15 resident-caregiver dyads from three diverse AL communities in Atlanta, Georgia in the U.S. Measurements Interview transcripts were coded for communication behavior. Concordances and discordances within dyads were examined. Results We identified a typology of four dyadic communication behaviors: Talking (i.e., both partners were talking with each other about death), Blocking (i.e., one partner wanted to talk about death but the other did not), Avoiding (i.e., each partner perceived that the other did not want to communicate about death), and Unable (i.e., dyads could not communicate about death because of interpersonal barriers). Conclusions Older residents in AL often want to talk about death but are blocked from doing so by an informal caregiver. Caregivers and AL residents may benefit from training in death communication. Recommendations for improving advance care planning and promoting better EOL communication includes timing these conversations before the opportunity is lost.

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Planning for the Future: Advance Care Planning Knowledge, Discussion and Decision-Making Among Older, Sexual Minority Adults

Singleton,

Kozlov,

Friedman

et al. 2024

Am J Hosp Palliat Care

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Background: Prior research has shown that advance care planning (ACP) knowledge and discussion varies among racial and ethnic groups. However, little is known if similar disparities exist within the sexual minority (SM) population. Objectives: To investigate racial disparities in ACP knowledge, discussion, and decision making within the SM population. Methods: Data from an online survey (N = 281) asked Black and White SM adults ages 50+ about their knowledge and actions about future healthcare wishes and their healthcare experiences. A series of multivariable logistic regressions were conducted to examine the association between ACP knowledge, discussion, and medical decision-making and race, while adjusting for other demographic and health-related variables. Results: On average, respondents were 57 years old (SD = 6.04) and just over half identified as being White (52%) and as men (55%). Most participants had heard of ACP (74%) and had an ACP discussion with someone (65%). Sixty-six percent of participants were very comfortable with medical decision-making. White SM adults had higher odds of having ACP knowledge (aOR = 3.56; 95% CI = 1.78, 7.07) and discussions (aOR = 2.43; 95% CI = 1.28, 4.61). While no racial differences were found in comfort with medical decision-making, other sociodemographics were significantly associated with comfort with medical decision-making. Conclusion: Outcomes from this work indicate persistent racial disparities in ACP within the SM population in addition to highlighting other factors that influence ACP. These findings emphasize the need for resources to address this systemic issues and to ensure that SM adults have access to and engage in ACP.

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Turning It Over to God: African American Assisted Living Residents’ End-of-Life Preferences and Advance Care Planning

Cited by 3 publications

References 35 publications

Advance care planning as perceived by marginalized populations: Willing to engage and facing obstacles

Advance care planning as perceived by marginalized populations: Willing to engage and facing obstacles

Resident and Caregiver Dyads Talk About Death and Dying in Assisted Living: A Typology of Communication Behaviors

Planning for the Future: Advance Care Planning Knowledge, Discussion and Decision-Making Among Older, Sexual Minority Adults

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