Advance care planning among older LGBT Canadians: Heteronormative influences

Sexualities ◽  
2020 ◽  
pp. 136346071989696
Author(s):  
Brian de Vries ◽  
Gloria Gutman ◽  
Shimae Soheilipour ◽  
Jacqueline Gahagan ◽  
Áine Humble ◽  
...  
Keyword(s):  
Older Adults ◽  
End Of Life ◽  
Advance Care Planning ◽  
Cultural Context ◽  
Death And Dying ◽  
Living Will ◽  
Community Dwelling ◽  
Care Planning ◽  
Power Of Attorney ◽  
Advance Care

Advance care planning (ACP) in North America often takes place in a cultural context of great ambivalence about death and dying, challenging efforts to discuss end-of-life care desires and preparations for death. Such challenges are amplified for sexual and gender minority older adults who often lack connections to traditional heteronormative systems of support. The extent of ACP preparation (completed documents, discussions) and their predictors was examined among a national sample of 91 community-dwelling Canadian LGBT older adults (mean age 68). The sample was disproportionately single and lived alone; more trans participants had children and about half of all participants reported a chosen family. About two-thirds of participants had a will, while less than half had a living will and power of attorney for health care, and a quarter had made informal caregiving arrangements. Just over one-third of respondents reported having discussions about future care and end-of-life plans. The only significant predictors of both ACP documents completed and ACP discussions undertaken were relationship status (those in a relationship were more likely to have engaged in both) and number of children (those with children were less likely to have completed documents). Given that most LGBT older adults are single, efforts must be expanded to reach and engage these individuals in preparing for end of life.

scholarly journals Acceptability of Paper-Based Advance Care Planning (ACP) to Inform End-of-Life Care Provision for Community Dwelling Older Adults: A Qualitative Interview Study

Geriatrics ◽  
2018 ◽  
Vol 3 (4) ◽  
pp. 88 ◽  
Author(s):  
Gary Bellamy ◽  
Jennifer Stock ◽  
Patricia Schofield
Keyword(s):  
Older Adults ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Community Dwelling ◽  
Care Planning ◽  
Care Provision ◽  
Life Care ◽  
Telephone Interviews ◽  
Advance Care

This paper reports the findings from a study to investigate health care professionals’ views regarding the use and acceptability of two similar paper-based advance care planning (ACP) documents designed for older adults in their last year of life to inform end-of-life care provision. Participants’ views of using PEACE (Proactive Elderly Persons Advisory Care), a nurse led model with community geriatrician oversight, and PACe (proactive anticipatory care plan), a general practitioner (GP) led model implemented by two clinical commissioning groups (CCGs) as part of a wider pilot to determine their ability to improve end-of-life care provision, were explored. Hospital admission avoidance matrons took part in face to face interviews and care staff employed in private residential care homes took part in individual telephone interviews to explore their views of using the PEACE tool. Telephone interviews were conducted with GPs to explore their views of PACe. GPs and admission avoidance matrons were employed by CCGs and all study participants were recruited from the South East of England, where data collection took place in 2015. The data were analysed thematically. Findings from the study demonstrate how both tools provide a focus to ACP discussions to inform individual end-of-life care preferences. The importance of relationships was a pivotal theme established, trusting inter-professional relationships to enable multidisciplinary teamwork and a prior relationship with the older person (or their proxy in the case of cognitive impairment) to enable such conversations in the first place. Both tools enabled participants to think critically and reflect on their own practice. Notwithstanding participants’ views to improve their layout, using a paper-based approach to deliver streamlined ACP and end-of-life care was a theme to emerge as a potential barrier, and highlighted problems with accessing paper-based documentation, accuracy and care co-ordination in the context of multidisciplinary team working. The value of technology in overcoming this barrier and underpinning ACP as a means to help simplify service provision, promote integrated professional practice and provide seamless care, was put forward as a way forward.

Advance care planning in the community: factors of influence

2020 ◽  
pp. bmjspcare-2020-002221
Author(s):  
Joshua Gallagher ◽  
Timothy Bolt ◽  
Nanako Tamiya
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
Formal Education ◽  
Death And Dying ◽  
Community Dwelling ◽  
Public Health Approach ◽  
Care Planning ◽  
Cross Sectional ◽  
Community Factors ◽  
Advance Care

ObjectivesThis study aims to identify factors among British community-based adults associated with advance care planning engagement. Factors are then compared among six domains of wishes: medical care, spiritual and religious needs, privacy and peace, dignified care, place of death and pain relief.MethodsCross-sectional data were analysed from a stratified random sample of adults across Great Britain (England, Scotland and Wales) who were interviewed on their attitudes towards death and dying. Weighted multivariable logistic regression tested for associations with expressing any end-of-life wishes and then for each separate domain.ResultsAnalysis of 2042 respondents (response rate: 53.5%) revealed those less likely to have discussed their wishes were: male, younger, born in the UK, owned their residence, had no experience working in health or social care, had no chronic conditions or disabilities, had not experienced the death of a close person in the last 5 years and feel neither comfortable nor uncomfortable or uncomfortable talking about death. Additional factors among the six domains associated with having not discussed wishes include: having less and more formal education, no religious beliefs, lower household income and living with at least one other person.ConclusionsThis study is the first to be conducted among a sample of community-dwelling British adults and the first of its kind to compare domains of end-of-life wishes. Our findings provide an understanding of social determinants which can inform a public health approach to end-of-life care that promotes advance care planning among compassionate communities.

Patient and caregiver characteristics related to completion of advance directives in terminally ill patients

2016 ◽  
Vol 15 (1) ◽  
pp. 12-19 ◽  
Author(s):  
Grace W.K. Ho ◽  
Lauren Skaggs ◽  
Gayane Yenokyan ◽  
Anela Kellogg ◽  
Julie A. Johnson ◽  
...  
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
Terminal Illness ◽  
Terminally Ill ◽  
Living Will ◽  
Care Planning ◽  
Power Of Attorney ◽  
Convenience Sample ◽  
Advance Care ◽  
Lateral Sclerosis

AbstractObjective:There is a growing body of literature describing the characteristics of patients who plan for the end of life, but little research has examined how caregivers influence patients' advance care planning (ACP). The purpose of this study was to examine how patient and caregiver characteristics are associated with advance directive (AD) completion among patients diagnosed with a terminal illness. We defined AD completion as having completed a living will and/or identified a healthcare power of attorney.Method:A convenience sample of 206 caregiver–patient dyads was included in the study. All patients were diagnosed with an advanced life-limiting illness. Trained research nurses administered surveys to collect information on patient and caregiver demographics (i.e., age, sex, race, education, marital status, and individual annual income) and patients' diagnoses and completion of AD. Multivariate logistic regression was employed to model predictors for patients' AD completion.Results:Over half of our patient sample (59%) completed an AD. Patients who were older, diagnosed with amyotrophic lateral sclerosis, and with a caregiver who was Caucasian or declined to report an income level were more likely to have an AD in place.Significance of results:Our results suggest that both patient and caregiver characteristics may influence patients' decisions to complete an AD at the end of life. When possible, caregivers should be included in advance care planning for patients who are terminally ill.

Racial Differences in End-Of-Life Planning: Why Don'T Blacks and Latinos Prepare for the Inevitable?

2011 ◽  
Vol 63 (1) ◽  
pp. 1-20 ◽  
Author(s):  
Deborah Carr
Keyword(s):  
End Of Life ◽  
Racial Differences ◽  
Advance Care Planning ◽  
Ethnic Disparities ◽  
Chronically Ill ◽  
Living Will ◽  
Treatment Preferences ◽  
Care Planning ◽  
Power Of Attorney ◽  
Advance Care

I evaluate the extent to which ethnic disparities in advance care planning reflect cultural and religious attitudes and experience with the painful deaths of loved ones. Data are from a sample of 293 chronically ill older adults who are seeking care at one of two large medical centers in urban New Jersey. Blacks and Hispanics are significantly less likely than Whites to have a living will, a durable power of attorney for health care (DPAHC), and to have discussed their end of life treatment preferences. Multivariate analyses reveal that the Black-White gap in advance care planning is largely accounted for by Blacks' belief that God controls the timing and nature of death. The Hispanic-White gap is partially accounted for by the belief that one's illness negatively affects one's family. Ethnic disparities are starkest for living will and DPAHC use, and less pronounced for discussions. Implications for policy and practice are discussed.

scholarly journals Do Perceptions of Own and Spouse Survival Affect Advance Care Planning?

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 964-964
Author(s):  
Deborah Carr ◽  
Yifan Lou
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
Multivariate Analyses ◽  
Living Will ◽  
Care Planning ◽  
Power Of Attorney ◽  
Full Sample ◽  
Wisconsin Longitudinal Study ◽  
Advance Care ◽  
Using Data

Abstract COVID-19 has intensified the need for advance care planning (ACP), or formal preparations for end-of-life care, prior to the time such decisions are required. We propose that older adults’ perceived chances of survival, and one’s perceptions of whether they will outlive their spouse may be powerful motivators of ACP. Using data from the Wisconsin Longitudinal Study (WLS, n=4908, M age = 65), we examine the extent to which: (a) one’s perceived 10- and 20-year survival and (b) projections of dying before, after, or at the same time as one’s spouse affect three aspects of ACP (living will, durable power of attorney for health care designations (DPAHC), and discussions). Multivariate analyses are adjusted for health, demographics, socioeconomic characteristics, and death anxiety. In the full sample, women who perceived a high likelihood of 20-year survival were less likely (OR=.604, p < .05) whereas their male counterparts were more likely (OR = 1.4, p <.01) to name a DPAHC (relative to those who perceived a medium likelihood of survival). Among married persons only (n=3860), people who perceive that they will pre-decease their spouse are 1.5 times as likely to name their spouse as DPAHC (vs. no DPAHC), but are no more likely to name a different person to the role (relative to those who perceive that they and spouse will die at the same time). Practitioner and family conversations about older patients’ projected survival and how it shapes decision making are especially important as COVID-19 may require rapid decisions about end-of-life treatments.

scholarly journals Engagement in Advance Care Planning: The Association With Cognitive Impairment and Care Preferences

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 417-418
Author(s):  
Hyo Jung Lee ◽  
Giyeon Kim
Keyword(s):  
Older Adults ◽  
Cognitive Impairment ◽  
Relative Risk ◽  
End Of Life ◽  
Advance Care Planning ◽  
Multinomial Logistic Regression ◽  
Quality Care ◽  
Care Planning ◽  
Advance Care ◽  
Four Levels

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.

scholarly journals Racial Differences in the Impact of Subjective Life Expectancy on Advance Care Planning

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 903-903
Author(s):  
Yifan Lou ◽  
Deborah Carr
Keyword(s):  
Life Expectancy ◽  
Racial Differences ◽  
Advance Care Planning ◽  
Living Will ◽  
Care Planning ◽  
Power Of Attorney ◽  
Risk Of Death ◽  
Advance Care ◽  
Survival Expectations ◽  
The Impact

Abstract The need for advance care planning (ACP) is heightened during the COVID-19 pandemic, especially for older Blacks and Latinx persons who are at a disproportionate risk of death from both infectious and chronic disease. A potentially important yet underexplored explanation for well-documented racial disparities in ACP is subjective life expectancy (SLE), which may impel or impede ACP. Using Health and Retirement Study data (n=7484), we examined the extent to which perceived chances of living another 10 years (100, 51-99, 50, 1-49, or 0 percent) predict three aspects of ACP (living will (LW), durable power of attorney for health care designations (DPAHC), and discussions). We use logistic regression models to predict the odds of each ACP behavior, adjusted for sociodemographic, health, and depressive symptoms. We found modest evidence that SLE predicts ACP behaviors. Persons who are 100% certain they will be alive in ten years are less likely (OR = .68 and .71, respectively) whereas those with pessimistic survival prospects are more likely (OR = 1.23 and 1.15, respectively) to have a LW and a DPAHC, relative to those with modest perceived survival. However, upon closer inspection, these patterns hold only for those whose LW specify aggressive measures versus no LW. We found no race differences for formal aspects of planning (LW, DPAHC) although we did detect differences for informal discussions. Blacks with pessimistic survival expectations are more likely to have discussions, whereas Latinos are less likely relative to whites. We discuss implications for policies and practices to increase ACP rates.

Health-Care Provider Personal Religious Preferences and Their Perspectives on Advance Care Planning With Patients

2018 ◽  
Vol 35 (12) ◽  
pp. 1565-1571
Author(s):  
Marjorie Bowman ◽  
Sarah St. Cyr ◽  
Adrienne Stolf i
Keyword(s):  
Health Care ◽  
Health Care Providers ◽  
Advance Care Planning ◽  
Religious Affiliation ◽  
Living Will ◽  
Care Planning ◽  
Care Providers ◽  
Power Of Attorney ◽  
Religious Preference ◽  
Advance Care

Objective: To understand how health-care providers’ (HCPs) religious preferences influence their willingness to undertake advance care planning (ACP) with patients and their acceptance of other HCP’s involvement. Methods: Online anonymous survey distributed to HCPs in hospital, ambulatory offices, and hospice settings in Dayton, Ohio. We evaluated the associations of HCP religion with their personal ACP, willingness to facilitate ACP, and acceptance of other HCPs’ ACP participation. Results: 704 respondents: nurses (66.2%), physicians (18.8%), other HCPs (15.0%), white (88.9%), and primarily Catholic (23.3%) or Protestant (32.0%). “No religion” was marked by 13.9%. Respondents were favorable to ACP with patients. Religious respondents were more likely to have a living will ( P = .035) and health-care power of attorney ( P = .007) and more accepting of clergy as ACP decision coaches ( P = .030). HCP’s religion was not associated with willingness to facilitate ACP discussions. There were minor differences between Catholics and Protestants. Conclusions: Personal religious preference is associated with HCP’s own ACP but had little relationship with their willingness to facilitate ACP conversations with patients or acceptance of other professional types of HCPs involvement in ACP conversations. Regardless of religious affiliation, HCPs have interest in undertaking ACP and endorse other HCPs ACP involvement. As results of this study suggest that personal religious affiliation is not a barrier for HCPs engaging in ACP with patients, attempts to overcome barriers to increasing ACP should be directed to other factors.

Sign in / Sign up

Export Citation Format

Share Document