Engaging with the LGBTQ+ community to improve care policy and services

An article written by Nick Roberts

Is palliative care the same for everyone? Are there any particular considerations for diverse groups, including lesbian, gay, bisexual, transgender and gender diverse or queer (LGBTQ+) people? How can palliative care be made more inclusive and affirming for this community? 

These questions were all playing on my mind when I started working in palliative care policy, four years ago. The NSW Government has invested heavily in strengthening palliative care over the past few years, and equitable access is a key priority of the NSW End of Life and Palliative Care Framework. I realised that despite ongoing activities to develop equitable services, we needed more understanding of community members’ perspectives on barriers and enablers to palliative care. Through this understanding, we hope to support services to be more inclusive.

With my supervisors at the University of New South Wales, and colleagues in the NSW Ministry of Health, I had the privilege of finding out community opinions through a survey and interviews in 2020. There were 222 respondents to the full survey and about a quarter of these people had experience of palliative care for themselves or another LGBTQ+ person close to them.

What did we learn about community perspectives?

Reassuringly, most people who had experience of palliative care described positive experiences, where they felt respected and treated with dignity. They also valued respectful treatment of their chosen family and having their partner /chosen family included in their care. Participants identified potential barriers to quality palliative care, and strategies to improve palliative care for the LGBTQ+ community.

Some potential barriers to quality palliative care included issues relating to coming out, worries about care staff or services, and also tension relating to their biological families. Concerns also related to loneliness and isolation, next of kin issues, and the perceived potential for substandard treatment.

Potential strategies raised by community members included developing and distributing inclusive information about palliative care to LGBTQ+ community(ies), and services engaging with LGBTQ+ community(ies). Inclusive, non-discriminatory, respectful and affirming services were seen as key to delivering palliative care, as was improved awareness of palliative care amongst LGBTQ+ people. Staff training on LGBTQ+ community needs and issues was also raised by a number of participants.

Where to next?

Our recently published article in Health and Social Care in the Community, outlines the full research project, including more about these themes, and some of the participant quotes. The Ministry has also been working with ACON, who have created an online palliative care toolkit for community members to understand different aspects of end of life and palliative care. The research findings have been shared with the palliative care sector in various ways, to help services to be safe, affirming, and welcoming for everyone. The Ministry will also look for ways the findings from this research can support the aims of the new NSW Health LGBTIQ+ Health Strategy.

This project combined my passion for public health research, health equity, and LGBTQ+ health, with a focus on supporting people to feel assured, respected, and valued at the end of their lives. The insights we learned can support ongoing policy and service development activities to enhance palliative care, and our findings are relevant to specialist and non-specialist services and clinicians involved in palliative care. As one of the participants put it “For me it is most important that a person can be whoever they are”.

Nick Roberts  
Senior Policy Officer | Community Care and Priority Populations
Health and Social Policy Branch
NSW Health