This series of Q&As is a chance to meet the people who are working to create inclusive palliative and end-of-life care experiences for people who are LGBTIQ+ in Australia and around the world. Part one is with Jen Walsh, LGBTIQ+ Palliative Care Project Lead at Barwon Health.
Barwon Health, LGBTIQ+ Palliative Care Project Lead
1. Can you tell us about your role at Barwon Health?
I am leading a project around LGBTIQ+ inclusive practice in our Palliative Care Program. This 12-month project has been generously supported by Hospice Foundation Geelong. My role is to engage the voices of LGBTIQ+ people to ensure that our service is as inclusive as possible and that we provide culturally safe care at the end of life. Another focus will be to review every aspect of our program including referral processes, forms and training packages in order to ensure that LGBTIQ+ people are well represented and that their needs are understood by staff and volunteers. The ultimate goal of the project is to make sure that LGBTIQ+ people and their families are provided the highest quality of care.
2. Why is LGBTIQ+ palliative/end of life care important?
We want patients to feel ‘seen’ as a whole person at the end of their life, and this includes acknowledging, accepting and celebrating their gender identity, sexuality and family. A large focus in palliative care is already about quality of life, so it’s important that LGBTIQ+ people have access to the best quality care and quality of life possible with the time they have left. A person’s final days, weeks and months should be free of discrimination. It’s also important that their family and loved ones receive culturally safe bereavement support after they die.
3. Are there any particular challenges that LGBTIQ+ people in regional areas might face when trying to access inclusive palliative/end of life care?
There is still a belief amongst many LGBTIQ+ people in regional and rural areas that you need to go to a capital city in order to receive safe care. The project seeks to change that narrative and it’s really exciting for me to be surrounded by a team of allies who want to be a part of that change. People who live in our regions deserve to comfortably die in our region, instead of a long drive away from loved ones.
Regional areas like Geelong also have unique strengths. Part of this project aims to build on the sense of community that already exists in this region and build a connection between our palliative care service and local members of the LGBTIQ+ community. The hope is that we can build on the strengths of regional relationships so that people know that they can trust our service and also know that they can access all of the other community supports in our region.
4. What do you think are the barriers to health professionals prioritising LGBTIQ+ inclusion?
I believe one of the biggest barriers is simply that health professionals can be unaware of the years or decades of discrimination that many LGBTIQ+ people have faced in their lives prior to referral to their palliative care service. Although it is 2022 and things are a lot better now, this doesn’t eliminate all of the mistreatment that people have experienced in their lives. This long history of trauma can make it very hard for LGBTIQ+ people to trust health services. This could also result in late referral by the LGBTIQ+ person, which can affect their quality of life and quality of death.
But, there’s good news! Health professionals can take very simple steps to prioritise LGBTIQ+ inclusion and build trust. For example, health professionals can wear rainbow badges to signal safety, use gender-neutral and inclusive language, ensure their resources have diverse images and photos, and respect a patient’s family structure. Most importantly, palliative care practitioners can do what they do best – treat the whole person. This includes truly understanding the multiple facets of a patient’s identity.
5. Generally speaking, what would be important to you and your chosen family when accessing palliative/ end of life care services?
I really think that the most important thing for me would be for my care to be personalised for me. If I was accessing palliative care services today, I would want to know that my gender, sexuality and family were all acknowledged and respected. I would look around for signs of safety such as rainbows and I’d feel safe if the staff and volunteers modelled inclusive language with me and my partner. I would want to know that my partner would receive as much support as she needed while providing my care, and that she’d be offered culturally safe support after my death. Ultimately, I’d want them to treat all of me… not just my illness.