Palliative care for LGBTQ+ people in NSW research Findings. Picture of two women and a baby sitting on the couch with a dog

The Ministry of Health with the University of NSW carried out research to help NSW Health understand lesbian, gay, bisexual, transgender and gender diverse and queer (LGBTQ+) community views and preferences for palliative care. It's important that palliative care services are accessible, appropriate and affirming for the whole population. Until recently, there hasn't been much palliative care research with LGBTQ+ community members from NSW. The aim was to learn about community perspectives, to help NSW Health support services to be more inclusive.

What did the research involve?

A community survey was carried out in June 2020. A sub-set of survey participants were interviewed in August 2020, to understand the issues raised in more detail. Data from the surveys and interviews was analysed to identify the common themes. 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 were the research findings?

Most people who had experience of palliative care described good 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.

Potential barriers include:

  • considering whether to come out to services about their sexuality or gender
  • worries about care staff or services
  • biological families as a source of tension
  • loneliness and isolation experienced by some community members
  • next of kin and decision-making issues at end of life
  • worries about potential substandard treatment.

Potential strategies to address these include:

  • developing and distributing inclusive information about palliative care to LGBTQ+ community(ies)
  • services engaging with LGBTQ+ community(ies)
  • inclusive, non-discriminatory services delivering palliative care
  • improving LGBTQ+ people's awareness of palliative care
  • respectful, affirming and supportive staff interactions with LGBTQ+ people
  • staff training on LGBTQ+ community needs and issues.

What next?

The researchers have recently written a journal article in Health and Social Care in the Community, outlining the full research project, including more about these themes, and some of the participant quotes. Please contact the Ministry of Health if you would like to receive a copy of the full article.

The NSW Ministry of Health 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. Information on this website can make it easier to have open conversations about death and dying. It is to provide LGBTQ+ people with ideas about things to consider and decide when it comes to death and how to support a loved one's wishes, if faced with their death.

The research findings are being 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, which aims to celebrate and strengthen diversity, inclusion and belonging in our overall NSW health system.

This research was conducted under UNSW research ethics ref: HC200086; ACON research ethics ref: 2020/09.

Current as at: Thursday 13 October 2022