Key messages

  • Appropriate end-of-life and palliative care for people who are LGBTI affirms their identity, affirms their life story and respects their partner.
  • People who are LGBTI may experience sub-optimal end-of-life and palliative care. Reasons may include their stress about carers’ reactions, difficulties being treated with dignity and respect, how they are treated by family and friends, and/or a lack of recognition of friendships and of their partner’s rights in end-of-life decision making.
  • People may use a range of documents to express their values and preferences for end-of-life care and treatment. Health and community services should give due consideration to a person’s advance care planning documentation, whatever form it takes.
  • Clear and current legal documents can help protect the legal rights and end-of-life wishes of people who are LGBTI. These include documents such as advance care directives, or appointing a medical treatment decision maker or support person.

Appropriate end-of-life and palliative care for people who are LGBTI affirms their individual identity, affirms their life story and respects their partner. People who are LGBTI may experience sub-optimal end-of-life and palliative care. This may occur if, for instance, they cannot access appropriate services. Or they may be distressed if there are negative reactions to their gender identity or diverse sexual orientation. This may include homophobic, transphobic or biphobic prejudice, rejection or neglect. Others may face difficulties being treated with dignity and respect when they or their partner is dying.

Another issue for people who are LGBTI is that family and friends may not be aware of their sexual orientation, true gender identity, intersex status or relationships. As a result, their long-term friendships or partnerships may not be recognised, or openly acknowledged, or may be treated with awkwardness or hostility. This may mean that professionals aware of family opposition may have to recognise a partner’s rights in the individuals’ end-of-life decision making.

There are two important ways a person who is LGBTI can make their preferences clearly known.
  1. Appoint a medical treatment decision maker.

    Under the Victorian Medical Treatment Planning and Decisions Act (2016) a person can appoint a medical treatment decision maker, who can make decisions about their treatment when they are not capable of doing so themselves.

  2. Talk about and document preferences for future care and health outcomes.

    In Victoria, this can be done by writing a legally recognised advance care directive. A person’s advance care directive can include general statements about their values, medical preferences and what they would like their medical treatment decision maker to consider when acting on their behalf. It can also include instructional statements, in which a person may consent to or refuse a particular medical treatment.

    However, people may use a range of documents to express their values and preferences for care and treatment. Health services must give due consideration to a person’s advance care planning documentation, whatever form it takes. Victoria has some important tools that can assist professionals in this process, including Victoria’s Advance Care Planning Strategy

    Additionally, the AMA Resource for Doctors: have the conversation provides guidance for clinicians.
Clear and current documents are important for people who are LGBTI to help protect their legal rights and end-of-life wishes. The Department of Health and Human Services has developed some standard advance care planning forms that a person can use to make an advance care directive or appoint a medical treatment decision maker. For more information, visit advance care planning.

References

Cartwright, C., Hughes, M., and Lienert, T., 2014, End-of-life care for gay, lesbian, bisexual and transgender people, Culture, Health & Sexuality 14(5):537-548.

Hughes, M., and Cartwright, C., 2014, LGBT people's knowledge of and preparedness to discuss end-of-life care planning options, Health & Social Care in the Community 22(5):545-552.

Lawton, A., White, J., and Fromme, E. K., 2014, End-of-Life and Advance Care Planning Considerations for Lesbian, Gay, Bisexual, and Transgender Patients, #275, Journal of Palliative Medicine 17(1):106-108.

Department of Health and Human Services, Advanced Care Planning, www.health.vic.gov.au/acp