LGBTIQA+ people and advanced cancer

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 some 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
• concerns about their partner/s or chosen family 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.

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. 

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.

For more information, see How to spot an LGBTIQA+ friendly services and visit the LGBTIQ+ Palliative Care Project.

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.

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.

You can write down your goals and instructions for your future medical care in this document. It also records your values and treatment preferences. Doctors, family, carers and substitute decision-makers can follow this record if you become unable to communicate or make decisions.

 For more information, see Advance care planning.

You can legally appoint one or more people to make treatment decisions for you if you become incapable of making them yourself. A substitute decision-maker should be someone you trust, and who understands your values and preferences for care. They do not have to be your next of kin or a carer. Depending on where you live, this paperwork may be known as an enduring guardian, enduring power of attorney or medical treatment decision-maker. A social worker may be able to help you with appointing a substitute decision-maker.

If you are unable to look after your own financial and legal affairs, you can legally give one or more people the power to make financial or legal decisions for you.

A will is a legal document that sets out what you want to happen to things you own (your assets) after you die. These assets are called your estate and may include your house, land, car, bank accounts, jewellery, clothes, household goods or investments. A will can also record guardianship plans for any children you have.

A will needs to be prepared and written in the right way to be legally valid. It is best to ask a lawyer to help you or contact the Public Trustee in your state or territory. If you die without a will, you are said to die intestate. Your assets are distributed to family members according to a formula set out in the law. Although any will can be challenged in court, having a valid will usually means your assets go to the people of your choice and avoids extra expenses.