It’s 2020 and some LGBTIQ+ people still don’t have access to inclusive palliative care services
A blog post written by Alex Taylor, Project Officer and Hannah Morgan, Project Coordinator at National LGBTI Health Alliance
Despite it being 2020, health care services are still not always safe spaces for people from LGBTIQ+ communities. For many LGBTIQ people, engaging with health practitioners can mean being at the receiving end of assumptions, judgements, and discrimination.
While there are many health practitioners who are aware of how to be inclusive, inclusion is unfortunately not the default position. More understanding and education is required so that LGBTIQ+ people can feel confident that they will be able to feel safe to access health care services in the palliative care space. The story below illustrates how important this can be for someone who has not always been treated well in the past.
“As a 59-year-old LGBT person, I grew up in an environment that was extremely homophobic. I was traumatised within my family structure and within the community. LGBT seniors of my age were often exposed to various forms of psychological trauma of isolation as well as not being able to be open about themselves. In addition, there are people such as myself who experienced quite severe physical trauma, assault, being stalked – actual life endangerment. As a cancer patient, I found the discrimination continued during the initial medical and surgical treatments. At the moment though, I am also receiving palliative care, which to me is a godsend. It is absolutely essential, and many people would fare so much better in cancer care and their symptoms would be managed better if they were connected to palliative care.”
In 2019, the Australian Government Department of Health (DoH) engaged Australian Healthcare Associates (AHA) who authored a report titled ‘Exploratory Analysis of Barriers to Palliative Care Issues Report on People Who Identify as Lesbian, Gay, Bisexual, Transgender or Intersex’. This report provided a comprehensive overview of the barriers LGBTIQ+ people face when accessing palliative care services.
The barriers that were outlined in the report included:
- Lack of awareness/understanding of palliative care
- Fear and experience of discrimination and bias, especially from faith-based services and in residential settings
- Heteronormative assumptions, including in publicity material, forms, and interpersonal communication
- Lack of recognition of LGBTIQ+ relationships and family of choice, including legal recognition
- Service providers’ lack of knowledge, especially around trans and intersex health care
- Issues related to HIV/AIDS, including stigma, multiple morbidity, and neurodegenerative conditions.
The report made some key recommendations including that there be LGBTIQ+ specific education and training for care providers.
The National LGBTI Health Alliance (the Alliance) have been funded by the Australian Government DoH under the 2020-2023 National Palliative Care Program to deliver a project which aims to improve the knowledge of care providers in the palliative care space.
The National LGBTI Health Alliance Palliative Care Project Overview
Over the next three years, the Alliance project team will achieve this through the three phases.
Phase 1 - Finding out what is needed
We will conduct a scoping review to find out more about what we need to do to support GPs and Practice Nurses to become more culturally competent when working with LGBTIQ+ people. This will include a Literature Review and the development of surveys targeted towards the Palliative Care Sector as well as LGBTIQ+ communities.
Phase 2 - Educating GPs and Practice Nurses
Phase two will involve the co-design of online e-modules to build the capacity of GPs and Practice Nurses around LGBTIQ+ and palliative care. E-modules will be piloted across a range of different settings.
Phase 3 - Building Communities of Practice
Partner organisations will be supported to establish effective Communities of Practice (CoP) groups. Each group will be responsible for developing a resource to further support capacity building of the palliative care sector around LGBTIQ+ inclusive practice. The Project Team will support the implementation of a CoP Framework and guide the development of resources that are created within these groups. There will also be opportunities for groups to share information and engage at a national level.
Get involved
There are a range of different ways to get involved in the project throughout the coming years including consultation and codesign opportunities. If you have a particular interest, knowledge or personal/lived experience that could inform this work, we would really love to hear from you.
Please contact the Project Coordinator Hannah Morgan at hannah.morgan@lgbtihealth.org.au if you would like to speak further.
References
- Australian Healthcare Associates (AHA). Exploratory Analysis of Barriers to Palliative Care Issues Report on People Who Identify as Lesbian, Gay, Bisexual, Transgender or Intersex. Melbourne, VIC: AHA; 2019 Sep.
- Acquaviva K. LGBTIQ-Inclusive Hospice and Palliative Care. A Practical Guide to Transforming Professional Practice. New York: Harrington Park Press; 2017.
Alex Taylor, Project Officer at National LGBTI Health Alliance
Hannah Morgan, Project Coordinator at National LGBTI Health Alliance