Palliative care is person-centred care that helps people with a progressive, life-limiting illness live as comfortably as possible.
Learn more about:
- Overview
- Barriers to inclusive palliative care
- Respectful, inclusive care
- Recognising family
- Intimacy and palliative care
Overview
The main goal is to maintain your quality of life by dealing with your physical, emotional, cultural, social and spiritual needs. Palliative care also supports families and carers, including with bereavement care.
Depending on what services are available where you live, you can have palliative care at home, at a residential aged care facility, or in a hospital or specialist palliative care unit.
For more on this, see our general section on Palliative care.
Barriers to inclusive palliative care
After experiencing a lifetime of discrimination and stigma, LGBTIQA+ people may worry about receiving palliative and end-of-life care that is safe and meets their needs. Your concerns about receiving inclusive palliative care may also be influenced by any unpleasant experiences and negative attitudes you may have had when friends had palliative care during the HIV/AIDS epidemic.
Reasons why LGBTIQA+ people may avoid or delay accessing palliative care services include:
- distrust of healthcare providers because of past experiences
- fear of discrimination, harassment, judgement or having to hide their identity
- concerns that health professionals will make assumptions about their gender, body or sexual orientation
- fears that health care will not affirm their gender
- concerns about physical safety or receiving respectful personal care
- worry about their partner/s or family of choice being excluded
- lack of support with advance care planning and access to palliative care
- fears about social isolation and facing the end of life.
Other aspects of identity, such as age, race, culture, disability, and where you live, can also influence how you feel about palliative care.
Respectful, inclusive care
All LGBTIQA+ people have the right to palliative care that is safe, respectful and inclusive. It’s unlawful for palliative care services to discriminate against LGBTIQA+ people (see Dealing with discrimination).
Some LGBTIQA+ people who use palliative care services disclose their sexual orientation, gender or intersex variation, while others don’t.
It’s your choice, but letting your palliative care providers know more about you can help them best meet your needs.
When looking for palliative care providers, ask how they make people feel safe, included and respected. This may give you an opportunity to raise any specific care needs related to your sexual orientation, gender or intersex variation.
Learn some ways to identify LGBTIQA+ friendly services.
Recognising family
Palliative care recognises the importance of involving spouses, partner/s, family and carers in decisions about your care, with your consent. The palliative care team will also provide family and friends with emotional support and referrals to counselling and grief support
Some LGBTIQA+ people are estranged from their family of origin and surround themselves with chosen family. Others are not out to their family, or their family is hostile to their identity. Sometimes, conflicts can arise between the family of origin and the chosen family.
To ensure that the people you want to make decisions on your behalf are recognised by the palliative care service, you should appoint one or more substitute decision-makers.
Intimacy and palliative care
Sexual activity and intimacy remain important to many people, even when cancer is advanced. It’s okay to talk to your healthcare team about the impact of any treatment on your sex life or ability to be intimate.
If you have a spouse or partner/s, try to spend intimate time together, rather than only as “patient” and “carer”. If you’re in residential palliative care, ask if a double bed is available so you can have some private time. Intimacy can provide comfort and maintain connection.
Even if sexual intimacy is no longer possible or desired, you may enjoy physical closeness through cuddling, touching, massage or simply lying beside each other.
→ READ MORE: Advance care planning
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Key resource
The information on this page is also available for download.
We thank the chief investigators from the Out with Cancer research project: Prof Jane Ussher, Prof Janette Perz, Prof Martha Hickey, Prof Suzanne Chambers, Prof Gary Dowsett, Prof Ian Davis, Prof Katherine Boydell, Prof Kerry Robinson and Dr Chloe Parton. Partner investigators were Dr Fiona McDonald and A/Prof Antoinette Anazodo. Research Associates were Dr Rosalie Power, Dr Kimberley Allison and Dr Alexandra J. Hawkey.
We thank the reviewers of our LGBTQI+ People and Cancer booklet: Prof Jane Ussher, Chair, Women’s Heath Psychology and Chief Investigator, Out with Cancer study, Western Sydney University, NSW; ACON; Dr Kimberley Allison, Out with Cancer study, Western Sydney University, NSW; Dr Katherine Allsopp, Supportive and Palliative Care Specialist, Westmead Hospital, NSW; A/Prof Antoinette Anazodo OAM, Paediatric and Adolescent Oncologist, Sydney Children’s Hospital, NSW; Megan Bathgate, Consumer; Gregory Bock, Clinical Nurse Consultant–Oncology Coordinator, Urology Cancer Nurse Coordination Service, WA Cancer & Palliative Care Network, WA; Morgan Carpenter, Executive Director, Intersex Human Rights Australia (formerly OII Australia); Prof Lorraine Chantrill, Medical Co-Director Cancer Services, Illawarra Shoalhaven Local Health District, NSW; A/Prof Ada Cheung, Endocrinologist, Head, Trans Health Research Group, Department of Medicine (Austin Health), The University of Melbourne, VIC; Bonney Corbin, Australian Women’s Health Network; Cristyn Davies, Research Fellow, Specialty of Child and Adolescent Health, Faculty of Medicine and Health, The University of Sydney and Children’s Hospital Westmead Clinical School, NSW; Prof Ian Davis, Professor of Medicine, Monash University and Eastern Health, Medical Oncologist, Eastern Health, Chair, ANZUP Cancer Trials Group, VIC; Rebecca Dominguez, President, Bisexual Alliance Victoria; Liz Duck-Chong, Projects Coordinator, TransHub and Trans Health Equity, ACON, NSW; Lauren Giordano, 13 11 20 Consultant, Cancer Council NSW; Hall & Wilcox (law firm); Natalie Halse, BCNA Consumer Representative; Jem Hensley, Consumer; Prof Martha Hickey, Professor of Obstetrics and Gynaecology, The University of Melbourne, and Director of the Gynaecology Research Centre, The Women’s Hospital, VIC; Kim Hobbs, Clinical Specialist Social Worker – Gynaecological Cancer, Westmead Hospital, NSW; Dr Laura Kirsten, Principal Clinical Psychologist, Nepean Cancer Care Centre, NSW; Amber Loomis, Policy and Research Coordinator, LGBTIQ+ Health Australia; Julie McCrossin and Melissa Gibson, Consumers; Dr Fiona McDonald, Research Manager, Canteen, NSW; Dr Gary Morrison, Shine a Light (LGBTQIA+ Cancer Support Group); Penelope Murphy, Cancer Council NSW Liaison, Prince of Wales Hospital, NSW; Dr Rosalie Power, Out with Cancer study, Western Sydney University, NSW; Jan Priaulx, 13 11 20 Consultant, Cancer Council NSW; Paul Scott-Williams, Consumer; Simone Sheridan, Sexual Health Nurse Consultant, Sexual Health Services, Austin Health, VIC; Cheryl Waller and Rhonda Beach, Consumers.
View the Cancer Council NSW editorial policy.
