Mr. Odhrán Allen:

I thank the Chairman and members for inviting us to make a presentation on end-of-life issues for lesbian, gay, bisexual and transgender people. This is an important matter and GLEN welcomes the committee's consideration of it. Throughout my presentation I will use the acronym LGBT to refer to lesbian, gay, bisexual and transgender people. I hope to highlight how LGBT people's needs can be fully incorporated into end-of-life policy and service delivery in Ireland.

End-of-life issues affect LGBT people of all ages, as well as their partners, families and friends. However, older LGBT people are the group most affected by and concerned about end-of-life issues. For this reason I will focus on older LGBT people today, but the recommendations I make are applicable to services to LGBT people of all ages.

A recent Irish study called Visible Lives: Identifying the Experiences and Needs of Older LGBT People was the first study of its kind in Ireland. It was commissioned by GLEN, funded by Age and Opportunity and the HSE and published in 2011. Professor Agnes Higgins from Trinity College Dublin was the principal investigator in this study and is present in the gallery. On behalf of GLEN, I take this opportunity to thank her and her research team for producing this excellent research report. I understand a copy of the report has been made available for members.

The study surveyed 144 LGBT people aged between 55 and 80 from across the Republic of Ireland, and 36 people were interviewed in depth. The study found that 46% were living alone, 43% were single and 31% were feeling lonelier as they aged. One in four are either just about getting by or are struggling financially. Only 11% said they had written a living will and just one in four had given someone power of attorney. Some 48% said they had discussed their final wishes with someone and 62% had written a last will and testament. By far the most preferred option was to live their final years and die in their own homes, as is the case for the general population. The least preferred option is to be in a nursing home. This is because of fears of being placed in a nursing home. Some said they would prefer to live in an exclusively LGBT retirement community or an older-age facility that is fully respectful of LGBT people because of these fears. A major concern for participants in the study is that the staff in older-age and end-of-life services will not recognise or respect their LGBT identity or their relationships and that they would have in effect to return to the closet and conceal their LGBT identity in order to feel safe when using end-of-life services. This is an incredibly difficult scenario for somebody at an end-of-life stage. Almost one in four said they had received poor quality health care and 40% considered this to be related to being LGBT. Just one in three believed that health care professionals had sufficient knowledge about LGBT issues and only 40% felt respected as an LGBT person by their health care provider. It is clear from this study that older LGBT people in Ireland fear being discriminated against when using end-of-life services, including nursing homes, and this results in their being cautious about being open about their sexual orientation or gender identity and reluctant to engage with health and support services. However, given the increased incidence of being single, living alone and not having traditional family structures and supports, as evidenced in the Visible Lives study, older LGBT people are most likely to need and indeed benefit from such services at end of life.

Transgender people have concerns that services will not respond to their needs or respect their gender identity, particularly as they age. There is good evidence from Irish research that health care practitioners can have serious gaps in their understanding of the health care needs of transgender people and how to provide appropriate supports to them. LGBT people may have reasons for not disclosing they are in a loving, close same-sex relationship, and not being "out" can have significant implications for gay and lesbian couples when one partner is seriously ill or dies. This can lead to exclusion of the surviving partner from end-of-life decision-making or funeral planning. Difficult experiences such as these can be further compounded when the grief of the surviving partner is unrecognised or unacknowledged. This is referred to as disenfranchised grief and has been evidenced in Irish research on bereaved gay and lesbian people.

I will now focus on some of the solutions. The findings of Visible Lives, coupled with the difficult experiences older LGBT people had in the past, can lead to a particular set of challenges for LGBT people at end of life and for those providing services to them. This point is echoed in an excellent resource developed by the National Health Service in the UK called The Route to Success in End of Life Care: Achieving Quality for Lesbian, Gay, Bisexual and Transgender People. The authors of this report identify that end-of-life services need to actively encourage LGBT people to be confident in being open about their relationships and needs. They say this can be achieved in a number of ways and set out four suggestions: that it should be recognised that sexual orientation and gender identity is about who a person is and with whom he or she falls in love and has loving committed relationships, as opposed to with whom he or she has sex; that appropriate and inclusive language should be used to facilitate understanding and identification of who is important to the LGBT person; that LGBT people and their families and carers need a comfortable and safe environment to feel able to be open; and that there should be an LGBT-friendly culture based on an inclusive practice model.

With regard to an inclusive practice model, the Psychological Society of Ireland produced a policy document on inclusive practice in health services. It described inclusive practice as follows: expecting diversity among service users and respecting that diversity; understanding the issues facing diverse groups such as LGBT people and being able to respond to their specific needs; and providing an accessible and appropriate service within one's area of competence.

In summary, GLEN advocates the following to ensure that the needs of LGBT people are met at the end of life. An end-of-life policy should be based on principles such as equality, diversity and respect for individual autonomy, and LGBT people should be named as a population group with specific needs; and end-of-life services should be based on a model of inclusive practice that recognises and responds to the needs of different groups, such as LGBT people, and fully respects LGBT people’s identities, relationships and families. I thank the committee for the opportunity to speak and I am happy to answer any questions.