Advance Care Planning among Older Gay Men Living with HIV in Montreal, Canada: Challenges to Thinking and Talking about Future Care

Abstract

This qualitative study employed a cross sectional focus group design to explore how older gay men living with HIV, experience, perceive, and engage with advance care planning (ACP). Seven gay men 50+, residing in Montreal, Canada, participated in a focus group that was audio-recorded, transcribed, and thematically analyzed. Findings suggested that social isolation, preoccupations with day-to-day living, and managing disclosures related to sexual orientation and HIV status created barriers to these men's capacities to think about let alone talk about future care. These findings challenge current conceptualizations of ACP, which position reflection as an individual process that precedes allocating a decision-maker and communicating care preferences. Analyses further revealed that relational connections helped create a space where ACP could occur for participants. Hence, improving the uptake of ACP amongst older gay men with HIV may require interventions that embed such discussions into broader programs aimed at building support and community.

“This is how I want it”: Exploring the use of a workbook with persons with dementia to support advance care planning engagement

“…Approximately 13% of persons with dementia in North America reside alone, many of whom have limited access to familial support ( Gould et al., 2015 ). This isolation is further complicated for persons with dementia who have intersecting minoritized identities, like sexual orientation and HIV status ( Dube et al., 2021 ) and psychiatric disorders ( Donovan & Blazer, 2020 ), as they face active and systemic exclusion from accessing equitable palliative care ( Rosa et al, 2022 ). In such cases, sustained efforts to foster connections with health providers or community agencies (e.g., Alzheimer Societies) appear necessary prior to distributing an advance care planning engagement workbook like the one used in this study.…”

“…Staff recruiting participants in both phases were asked to reach out to potential participants who were (a) French or English speaking (b) clinically judged by staff to be a person with dementia in the early stages of their condition and capable of providing consent to participate in advance care planning discussions, or (c) an informal caregiver supporting a person with dementia capable of participation. Former research has suggested that simply participating in focus group deliberations about advance care planning can activate contemplation ( Dube et al, 2021 ; Sussman, Pimienta, & Hayward, 2021 ). Hence, in order to avoid confounding results on workbook use and advance care planning activation, Phase 2 recruitment targeted participants who had not participated in Phase 1.…”

Lesbian, gay, bisexual, transgender and gender diverse and queer ( LGBTQ ) community members' perspectives on palliative care in New South Wales ( NSW ), Australia

“…The literature identifies particular barriers to accessible and appropriate palliative care for people with diverse sexualities and sexual identities (Barrett & Wholihan, 2016 ; Bristowe et al, 2018 ; Marsack & Stephenson, 2018 ; Stevens & Abrahm, 2019 ), and that there are separate issues that need to be addressed for older LGBT people later years and end of life, in addition to those affecting the broader population (Almack et al, 2021 ). The international literature has addressed advance care planning (Cartwright et al, 2018 ; Dube et al, 2021 ; Marsack & Stephenson, 2018 ); LGBTQ people's experiences of palliative care (Bristowe et al, 2018 ; Kemery, 2021 ); clinical recommendations for palliative care with LGBT people (Maingi et al, 2018 ) and transgender people (Stevens & Abrahm, 2019 ); and education and training (Chidiac & Connolly, 2016 ; Sprik & Gentile, 2020 ), among other topics. Research on palliative care with these communities in NSW is limited, furthermore, the NSW research involving LGBT community members has focused on knowledge and perspectives of LGBT people on end of life and advance care planning alone, and not palliative care services (Cartwright et al, 2010 ; Hughes & Cartwright, 2014 ).…”

“…The literature identifies particular barriers to accessible and appropriate palliative care for people with diverse sexualities and sexual identities (Barrett & Wholihan, 2016;Bristowe et al, 2018;Marsack & Stephenson, 2018;Stevens & Abrahm, 2019), and that there are separate issues that need to be addressed for older LGBT people later years and end of life, in addition to those affecting the broader population (Almack et al, 2021). The international literature has addressed advance care planning (Cartwright et al, 2018;Dube et al, 2021;Marsack & Stephenson, 2018);…”

Advance Care Planning Among Elderly Acquired Immunodeficiency Syndrome Patients

“…[11][12][13] Advance care planning also facilitates doctor-patient communication, reduces clinical decision-making conflicts, and enhances the expression of end-of-life wishes. 14 Generally, ACP is more prevalent in developed countries, such as North America, Australia, and New Zealand, [15][16][17][18] and more widely accepted in the medical field, particularly in hospitals, communities, and nursing homes. 11,15,19 In addition to elderly patients, the ACP population comprises parents/guardians of minors with lifethreatening illnesses, with the community being extended to patients with malignant tumors, Alzheimer disease, cardiovascular, and other diseases.…”