What are the biggest difficulties faced by LGBTIQ+ patients and their carers at the end of life?
LGBTIQ+ Health Australia recently conducted a scoping review and identified the key barriers impacting LGBTIQ+ communities accessing palliative care – these barriers also impact on carers who are LGBTIQ+ or those that care for people who are LGBTIQ+.
Chosen family is a term that some people who are LGBTIQ+ choose to use to represent the people in their lives that they consider to be their family. This is because sometimes people have experienced estrangement from their family of origin due to being LGBTIQ+.
It is also important to note, that a carer who is not LGBTIQ+ may be supporting a person who is LGBTIQ+ who is accessing palliative care and they should also be considered.
The barriers for people who are LGBTIQ+ in palliative care include:
- Stigma / discrimination by health care providers.
- Distrust of healthcare providers – including anticipatory discrimination.
- Ageing and ageism
- Legal issues – including not having access to Advance Care Planning
- Social isolation
- Issues around families of origin / families of choice – as well as excluding partners from end-of-life planning.
- Lack of access to services
- LGBTIQ+ people hiding who they are in fear of discrimination.
- Bereavement services that are not inclusive of LGBTIQ+ carers and chosen family.
- Failure to recognise LGBTIQ+ relationships.
- Homophobia / heterosexism
- Misgendering - not respecting and using people’s correct pronouns.
" LGBTIQ+ carers can feel concerned that they will not be recognised or included in health care decision-making and planning. "
Why is it important that we have tailored information resources to support LGBTIQ+ carers?
LGBTIQ+ carers can feel concerned that they will not be recognised or included in health care decision-making and planning. If there are any tensions between a person’s chosen family and family of origin, carers also need to feel supported around this and be given the tools to advocate and get support from the treating team.
It is important for carers who are LGBTIQ+ to understand their rights and be able to advocate for the person they are caring for as well as themselves. Carers who are not LGBTIQ+, but who care for a someone who is LGBTIQ+ would also benefit from understanding legal rights and protections that are available.
Older LGBTIQ+ people and their LGBTIQ+ carers may also be quite reluctant to tell health professionals that they are LGBTIQ+. This is why it is so important to offer safe and inclusive health care even if you think that no one you are caring for is LGBTIQ+.
Can you tell us about LGBTIQ+ Health Australia and how it collaborates with others to support the needs of persons with LGBTIQ+ backgrounds, including those with palliative care needs or carers for persons at the end of life?
" Older LGBTIQ+ people and their LGBTIQ+ carers may also be quite reluctant to tell health professionals that they are LGBTIQ+. "
As Australia’s national peak body for LGBTIQ+ Health, we aim to support our member organisations in the vital work they do in improving health outcomes for LGBTIQ+ communities. We also oversee a range of programs and projects across a variety of areas including policy, suicide prevention (MindOut) telephone and web-based counselling (Qlife), disability, ageing (Silver Rainbow) and palliative care.
We have been funded by the department of health to engage in palliative care sector capacity building through research, education, and development of communities of practice. We hope that we can support GPs and practice nurses, as well as other health professionals to feel more confident in offering inclusive and culturally safe palliative care services to people who are LGBTIQ+, their carers family and chosen family.
What do you look forward to in the CarerHelp Diversity Project?
I am really looking forward to seeing CarerHelp develop and showcase resources for carers who are LGBTIQ+. We are very excited to be able to work so collaboratively with CarerHelp in this work and we see many opportunities to link CarerHelp with our LGBTIQ+ member organisations across Australia.