Launched on Tuesday, October 29, EMBER is a guide designed to provide information on and address the specific challenges LGBTQ+ people in Ireland face regarding death, bereavement, and end-of-life care.

Developed by the All Ireland Institute of Hospice and Palliative Care (AIIHPC), LGBT Ireland and Irish Hospice Foundation, the project was inspired by a series of LGBTQ+ “Death Cafés”, which were held around Ireland in 2022. These events revealed the community’s need for more accessible information on death, bereavement, and end-of-life care.

Members of the LGBTQ+ community often face unique challenges in the legal and healthcare system at the end of their lives or when supporting loved ones. The EMBER guide aims to empower LGBTQ+ people to start planning at any age and to consider different aspects such as wills, healthcare planning and how they would like their life to be honoured.

 

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The official launch of the guide was marked with a community event that took place in Dublin’s Smock Alley Theatre and was described as a “unique wake experience”. Participants were called to lie with their own mortality and explore the feelings that finite life brings, as life and death were celebrated with music, speeches and a panel discussion.

The wake also featured a commemoration of those LGBTQ+ individuals whose identities were not fully honoured or celebrated at the time of their passing, to create a space for reflection on the importance of embracing one’s true self in life and death.

The speakers included in the panel were St Francis Hospice healthcare professional Kathleen Quinlan, LGBTQ+ activist, writer, consultant and community development worker Hayley Fox-Roberts, TENI’s Daire Dempsey, LGBT Ireland’s James O’Hagan and AIIHPC’s Paula Pinto. Together, they discussed the need to make information more accessible to LGBTQ+ people about how to face their end-of-life journey.

Talking about the specific challenges LGBTQ+ people often face, James O’Hagan said: “Our community isn’t the same because we’ve been, over generations, pushed out and exiled, and systems have been built that exclude us from their very foundations.”

He continued, “So it’s very tricky trying to figure out ‘How do I navigate this environment being fully myself? Or this environment that wasn’t created to meet my needs in the first place and all it wants from me is to be quiet about this part of who I am? That doesn’t want to see my relationships and my chosen family around me when I am in healthcare environment?’”

Speaking about the EMBER guide after the event to GCN, O’Hagan said: “I think that the really significant thing about this guide is that it’s going to be a tangible resource for people in healthcare who are going to be actually treating people in our community at a most vulnerable time.

“Facing into end of life is something that is incredibly complex and incredibly uncertain for people. And if you are coming from a marginalised community, you are going to bring all of those additional anxieties into that space with you.

“So our hope for this guide is that it becomes a place that health and social care professionals can take that information and be able to treat our community with the dignity and respect that we all deserve. And also for our community to start having more open conversations about death and dying, because it’s a fact of life,” he concluded.

Together with other relevant information, the EMBER guide will be hosted at The Palliative Hub, developed by AIIHPC. EMBER is supported by the LGBTI+ Community Services Fund 2023 from The Department of Children, Equality, Disability, Integration and Youth.