“By the time she got sick it was just kind of too late”: A qualitative study on advanced care planning among bereaved lesbian, gay, and bisexual older women

Background: Lesbian, gay, and bisexual (LGB) older women have unmet communication needs around palliative and end-of-life care. Past research has found communication differences for LGB women patients. Consequently, older LGB women may experience healthcare communication barriers around advance care planning. Aim: To explore experiences of bereaved LGB older women to understand perspectives regarding advance care planning communication between clinicians, patients, and dyads. Design: Guided by queer gerontology as a theoretical framework, this qualitative descriptive study employed individual interviews with purposively recruited participants. Interviews were conducted in person using a semi structured protocol and analyzed using inductive thematic analysis. Setting/participants: Sixteen LGB women, age 60 years or older from across the United States who had lost a spouse/partner within the past 5 years. Results: Four main themes emerged from the transcripts, LGB older women: (1) experience unclear advance care planning communication and end-of-life care support from clinicians, (2) often avoid advance care planning discussions with spouse or partners, (3) lack of knowledge about palliative or end-of-life care, and (4) have more positive experiences when there is consistent communication with spouse or partner and clinicians during a spouse/partner’s illness and end-of-life. Discussion: While certain experiences and opinions may reflect those of non-LGB older adults, novel advance care planning barriers exist for LGB older women. Greater understanding among clinicians is needed regarding advance care planning conversations with LGB dyads. We recommend four improvements in training, recognition, acceptance, and dyad-based communication interventions.

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The role of sexual orientation, age, living arrangements and self-rated health in planning for end-of-life care for lesbian, gay and bisexual (LGB) older people in the UK

Sexualities ◽

10.1177/1363460720932381 ◽

2020 ◽

pp. 136346072093238

Author(s):

Meiko Makita ◽

Alejandro Bahena ◽

Kathryn Almack

Keyword(s):

Sexual Orientation ◽

End Of Life ◽

Advance Care Planning ◽

Living Arrangements ◽

End Of Life Care ◽

Care Planning ◽

Life Care ◽

Self Rated Health ◽

Advance Care ◽

And Bisexual

This article reports on findings from the quantitative phase of a two-year research project designed to explore end-of-life care experiences and needs of lesbian, gay, bisexual and transgender people. We draw on a subset of the sample (N = 180/237) to analyse the relationship between advance care planning, sexual orientation, living arrangements and self-rated health. The results contribute to a growing body of evidence on how sexual minorities approach and make decisions on advance care planning. A greater understanding of such patterns could help inform the way healthcare professionals engage in conversations about end-of-life care planning with older LGB people.

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Improving care at the end of life: How advance care planning can help

Palliative & Supportive Care ◽

10.1017/s1478951504040258 ◽

2004 ◽

Vol 2 (2) ◽

pp. 191-197 ◽

Cited By ~ 3

Author(s):

JOHN C. MOSKOP

Keyword(s):

United States ◽

End Of Life ◽

Advance Care Planning ◽

End Of Life Care ◽

Moral Dilemmas ◽

The United States ◽

Care Planning ◽

Life Care ◽

Significant Discrepancy ◽

Advance Care

Based on a comparison of studies of patient desires regarding end-of-life care and of the actual course of end-of-life care, this article concludes that there is a significant discrepancy in the United States between the kind of care most people want and the kind of care they in fact receive. The article offers a case example to illustrate one type of dilemma commonly encountered in end-of-life care. It then introduces and describes the practice of advance care planning. Use of advance care planning, it is argued, can prevent moral dilemmas and improve end-of-life care.

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Disparities in Palliative and Hospice Care and Completion of Advance Care Planning and Directives Among Non-Hispanic Blacks: A Scoping Reviews of Recent Literature

American Journal of Hospice and Palliative Medicine® ◽

10.1177/1049909120966585 ◽

2020 ◽

pp. 104990912096658

Author(s):

Mohsen Bazargan ◽

Shahrzad Bazargan-Hejazi

Keyword(s):

End Of Life ◽

Advance Care Planning ◽

Scoping Review ◽

End Of Life Care ◽

Hospice Care ◽

The United States ◽

Care Planning ◽

Life Care ◽

Advance Care ◽

Published Research

Objectives: Published research in disparities in advance care planning, palliative, and end-of-life care is limited. However, available data points to significant barriers to palliative and end-of-life care among minority adults. The main objective of this scoping review was to summarize the current published research and literature on disparities in palliative and hospice care and completion of advance care planning and directives among non-Hispanc Blacks. Methods: The scoping review method was used because currently published research in disparities in palliative and hospice cares as well as advance care planning are limited. Nine electronic databases and websites were searched to identify English-language peer-reviewed publications published within last 20 years. A total of 147 studies that addressed palliative care, hospice care, and advance care planning and included non-Hispanic Blacks were incorporated in this study. The literature review include manuscripts that discuss the intersection of social determinants of health and end-of-life care for non-Hispanic Blacks. We examined the potential role and impact of several factors, including knowledge regarding palliative and hospice care; healthcare literacy; communication with providers and family; perceived or experienced discrimination with healthcare systems; mistrust in healthcare providers; health care coverage, religious-related activities and beliefs on palliative and hospice care utilization and completion of advance directives among non-Hispanic Blacks. Discussion: Cross-sectional and longitudinal national surveys, as well as local community- and clinic-based data, unequivocally point to major disparities in palliative and hospice care in the United States. Results suggest that national and community-based, multi-faceted, multi-disciplinary, theoretical-based, resourceful, culturally-sensitive interventions are urgently needed. A number of practical investigational interventions are offered. Additionally, we identify several research questions which need to be addressed in future research.

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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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