Knowledge About and Attitudes towards End of Life Care for Gay, Lesbian, Bisexual & Transgender People (Phase 2)

by Colleen Cartwright; Katherine Beck; Tania Leinert

Sep 1, 2010
Increasing evidence suggests that many gay, lesbian, bisexual and transgender (GLBT) people are being denied their legal rights in their own end-of-life care and the end-of-life care of their partners and other important people in their lives. A study in the Northern Rivers region of NSW in 2009, which investigated end-of-life care issues for GLBT people and the use of legal mechanisms such as Advance Care Planning to support the rights of GLBT people at the end of life (Lienert T, Cartwright C, Beck K. 2010) found evidence of active discrimination and abuse of GLBT people. Building on the findings of the Phase 1 study, a second State-wide study funded by a grant from the Law and Justice Foundation of NSW was conducted in 2009-2010.Stage 1, which is the subject of this Report, is a state-wide hard copy and on-line survey and a series of in-depth interviews.
  • In a study of 305 LGBT individuals in NSW, 25% of respondents had received care in the past 10 years because of a serious illness and 32% had provided care for someone in that situation.
  • When asked who they would want to make medical decisions for them if they could not do so, 52% said that they had spoken to the nominated person about their wishes.Those who had not done so identified a range of reasons why not, including that the issue had not arisen (49%) or that because they were young and/or healthy they saw no need (12%);10% regarded such as discussion as morbid and 8% could not identify a substitute decisionmaker.
  • 29% of respondents had given someone Enduring Power of Attorney; 18% had appointed an Enduring Guardian but only 12% had written an Advance Health Care Directive.
  • Respondents identified in this study as being at particular risk for not receiving adequate care and treatment at the end of life included those who: were not open about their sexuality to any significant others; nominated a gender other than Female or Male; were in a relationship other than single or partnered; were grieving the loss of a partner; had less than Year 10 education; had incomes of less than $20K per annum; or were in poor or fair health. People in such sociodemographic groups may require more support than others to talk about, and plan for, their end-of-life care.
  • Lack of knowledge about Advance Care Planning documents and how to complete them – which were major barriers identified by participants in relation to giving someone Enduring Power of Attorney to make financial decisions, appointing an Enduring Guardian to make health care decisions and completing an Advance Health Care Directive -- underlines the need for education, and for GLBT-specific resources which can be used to address this information gap.
  • While the majority of respondents said that they would prefer to die at home, 61% also nominated a GLBT-specific care facility as a preferred place to die. This appears to be entering the "end-of-life care for GLBT people" discussions (GRAI, 2010; Linton Estate 2009) and is an issue that may require further research to identify if the expressed need is actually for such a facility or is instead an expression of the need for a facility (or facilities) where GLBT people can feel safe to be who they are, to be treated with respect and dignity by the staff, to have the people they most care about around them and to have their wishes respected.
  • 4% to 23% said that it was not very likely that they would receive assistance in various tasks if they were seriously ill.
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