LGBT people's knowledge of and preparedness to discuss end-of-life care planning options

Abstract

Despite the devastating impact of HIV/AIDS, end-of-life care planning among lesbian, gay, bisexual and transgender (LGBT) communities is relatively under-researched, especially in Australia. This paper reports findings of a survey of 305 LGBT people living in New South Wales, which examined their knowledge of and attitudes towards end-of-life care. The focus of this paper is their preparedness to discuss with healthcare providers any end-of-life care plans. The results highlight that while the majority of respondents were aware of three of the four key end-of-life care planning options available in New South Wales--enduring powers of attorney, enduring guardians and person responsible (only a minority had heard of advance healthcare directives)--a much smaller number of people had actually taken up these options. Only a minority of respondents were able to identify correctly who had the legal right to make treatment decisions for a person who is unconscious following a car accident. A small proportion of people had discussed end-of-life care options with general practitioners or another main healthcare provider, and only in very few cases were these issues raised by the practitioners themselves. Those most likely to not feel comfortable discussing these issues with practitioners included younger people, those not fully open about their sexuality to family members, and transgender people and others who do not define their gender as male or female. The paper highlights the importance of education strategies to raise awareness of the end-of-life care planning options among LGBT people, as well as strategies for increasing health providers' preparedness to discuss these issues with LGBT patients.

End-of-Life Preparations among Lesbian, Gay, Bisexual, and Transgender People: Integrative Review of Prevalent Behaviors

“…First, the findings of two studies displayed in the top of the table converged to strongly suggest that very few LGBT people, perhaps only one in every ten, engage in EOL discussions with their primary health care providers (10% to 13%). Moreover, among those who did discuss EOL preferences with their providers, nearly all (92%) raised the issue themselves (Hughes & Cartwright, 2014). Moving down the table, there appears to be evidence of protective factors related to being a member of the LGBT community.…”

“…Also, more than 90% of the aggregate sample was non-Hispanic white people, approximately one-half of whom were partnered or married. Five of the studies were reported in peer-reviewed journals (Hughes & Cartwright, 2014;Hughes & Cartwright, 2015;Witten, 2014;Witten, 2015;Witten, 2016) while two others were nonpeer-reviewed publications (Fredriksen-Goldsen et al, 2011;MetLife Mature Market Institute, 2010) and one was presented as a webinar (de Vries et al, 2016).…”

“…Patients typically rely on health care providers to initiate discussions about EOL issues and to provide information about legal options (Hughes & Cartwright, 2014). Unfortunately, practitioners who do not "specialize" in palliative care often have difficulty timing these discussions.…”

“…Regrettably, health care providers tend to mirror society's heteronormative attitudes because they receive so little education and training related to the needs of LGBT people (Buckey & Browning, 2013;Hughes & Cartwright, 2014; National Resource Center on LGBT Aging, 2012;Rawlings, 2012). Health care providers' attitudes and consequent systemic discrimination impacts LBGT people's ability to communicate effectively with them.…”

“…A national poll of LGBT older adults in the United States found that one-third had not disclosed their sexual orientation or identity to their primary health care provider; nearly one-half believe that their relationship would be adversely affected by such disclosure (Services & Advocacy for GLBT Elders, 2014). Additionally, the LGBT elder's social network of "chosen family members," often not biologically or legally related, are frequently not recognized by providers (Hughes & Cartwright, 2014;Rawlings, 2012). These communication challenges contribute to vulnerabilities experienced by LGBT community members as they prepare for later life and EOL.…”