Perspectives of elders and their adult children of Black and minority ethnic heritage on end-of-life conversations: A meta-ethnography

Background: People of Black and minority ethnic heritage are more likely to die receiving life supporting measures and less likely to die at home. End-of-life care decision making often involves adult children as advance care planning is uncommon in these communities. Physicians report family distress as being a major factor in continuing with futile care. Aim: To develop a deeper understanding of the perspectives of elders of Black and minority ethnic heritage and their children, about end-of-life conversations that take place within the family, using a meta-ethnographic approach Design: Systematic interpretive exploration using the process of meta-ethnography was utilised. Data sources: CINAHL, MEDLINE, PubMed and PsycINFO databases were searched. Inclusion criteria included studies published between 2005 and 2019 and studies of conversations between ethnic minority elders and family about end-of-life care. Citation snowballing was used to ensure all appropriate references were identified. A total of 13 studies met the inclusion criteria and required quality level using Critical Appraisal Skills Programme. Results: The following four storylines were constructed: ‘My family will carry out everything for me; it is trust’; ‘No Mum, don’t talk like that’; ‘I leave it in God’s hands’; and ‘Who’s going to look after us?’ The synthesis reflected the dichotomous balance of trust and burden avoidance that characterises the perspectives of Black and minority ethnic elders to end-of-life care planning with their children.

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Conversations About Death and Dying, End-of-Life Care Plans and Preferences Between Aging Parents and Adult Children

Innovation in Aging ◽

10.1093/geroni/igaa057.1345 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 417-417

Author(s):

Hyo Jung Lee ◽

Jacobbina Jin Wen Ng

Keyword(s):

Decision Making ◽

End Of Life ◽

Adult Children ◽

End Of Life Care ◽

Death And Dying ◽

Family Members ◽

Life Care ◽

Joint Decision ◽

Aging Parents ◽

Care Plans

Abstract This study aims to investigate whether attitude and perception on late-life death and dying, end-of-life care plans and preferences could be better understood from current values shared between aging parents and their adult children in the multi-cultural city-bound country, Singapore. We are in the process of interviewing 20 aging parent-adult child dyads. Up to date, six semi-structured interviews were completed and transcribed. We performed Content analysis to analyze the transcripts. Preliminary findings showed that both aging parents and adult children rarely discussed this issue, although parents had their own plans or preferences. The major barriers against open conversations about death and dying of aging parents include: the perception of not-yet time to talk about this issue (without knowing when the right time is) and tendency to have conversations about death in tandem with finances, but not death itself. Although specific end-of-life care plans or arrangements were not thought out thoroughly, aging parents expressed a high level of trust and reliance on close family members’ decisions regarding their end-of-life care. They tended to agree on joint decision-making process within family, even though adult children had no or unmatched ideas about their aging parents’ end-of-life wishes. This did not necessarily align with previous findings in Western countries, underscoring individuals’ control over their own death and dying process. Open conversation within family, family-involved advance care planning, or joint decision-making processes may be warranted to promote quality of life and death in older Singaporeans and well-being of their family members of all ages.

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Nursing Home Resident, Family, and Staff Perspectives on Hospital Transfers for End-of-Life Care

OMEGA - Journal of Death and Dying ◽

10.1177/0030222821997708 ◽

2021 ◽

pp. 003022282199770

Author(s):

Janet Sopcheck ◽

Ruth M. Tappen

Keyword(s):

Emergency Department ◽

Nursing Home ◽

End Of Life ◽

End Of Life Care ◽

Family Members ◽

Terminally Ill ◽

South Florida ◽

Care Planning ◽

Life Care ◽

Advance Care

Residents who are terminally ill often experience transfers to the emergency department resulting in hospitalizations, which may be potentially avoidable with treatment in the nursing home. This qualitative study explored the perspectives of 15 residents, 10 family members, and 20 nursing home staff regarding end-of-life care and the circumstances prompting resident transfers. Data analysis of participant interviews conducted January to May 2019 in a South Florida nursing home identified four themes related to transfer to the hospital: time left to live, when aggressive treatments would be unavailing, not knowing what the nursing home can do, and transfer decisions are situation-dependent. Study findings underscore the importance of increasing resident and family awareness of treatments available in the nursing home and person-centered advance care planning discussions. Further research should explore the reasons for residents’ and family members’ choice of aggressive therapies and their goals for care at the end of life.

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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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