Palliative care for LGBTIQ+ people with breast cancer

As an LGBTIQ+ person, you have the right to palliative care free from discrimination and harassment. Palliative and end of life care aims to maintain quality of life when there is no possibility of recovery or cure from breast cancer. The palliative care treating team focuses on treating pain and other symptoms of breast cancer, as well as providing emotional and spiritual support for you and your loved ones.

Palliative care and chosen family

Will the palliative care team welcome my chosen family?

Patients, families and carers are "partners" in decision making regarding palliative care and are considered together as the focus of palliative cancer care. For LGBTIQ+ people chosen family includes  partner/s, friends and ex-partners who may have concerns about being welcomed as part of your palliative care.

You may have concerns about disclosing your sexual orientation or gender to the palliative care team in order to include a same-sex or trans partner in decision making on your care. See Disclosure: Sharing information about your sexual orientation or gender with your treating team

It is important to know you have the same rights as everyone else to have your partner/s and chosen family welcomed as part of your palliative care support team.

Will I be treated with compassion and respect?

You may question if you can trust the palliative care team to treat you with respect, without discrimination.

You may have questions such as 'Will a home support person treat you with compassion?' or 'How can you identify a supportive hospice chaplain for spiritual guidance at end-of-life?'

You have the right to end-of-life and palliative care services free from discrimination and harassment. If you have been discriminated against, the problem is not with you but may be with the attitudes and behaviour of people around you. See Legal issues for LGBTIQ+ people with cancer

Continuing intimacy during palliative care

You have the right to continue to connect with your intimate partner/s during palliative care. Your partner/s and other chosen family carers also have the right to receive support from the palliative care team. Continuing sexual intimacy can be a vital source of communication, reassurance and self-validation at end-of-life. Many people find that emotional intimacy, cuddling and other forms of touch replace their usual sexual practices at this time. Talking with your intimate partners about what you are comfortable with is important. See Sexuality and intimacy for LGBTIQ+ people with breast cancer

Addressing family grievances and rejection

Facing end-of-life can be a time for resolving grievances, including rejection by family members in the past. Your palliative care team may be able to support you through this process.

On the other hand, you may decide that resolution is not possible, and only your chosen family will be involved in your palliative care. See Social support for LGBTIQ+ people with breast cancer

Advance care planning

Clear and current advance care planning documents are important for LGBTIQ+ people. These documents assist in protecting your legal rights and end of life care choices. This is particularly important if your family or friends do not know or respect your sexual orientation, gender, or relationships.

Advance care planning allows you to outline the care you want to receive if you become unable to make decisions for yourself. You can appoint a chosen family member as your medical treatment decision maker, to make decisions for you. They have the power to act on your wishes, even when faced with opposition from doctors or family members. You may decide to make an advance care directive, which is a legal document that ensures your medical treatment decisions will be respected.

Many LGBTIQ+ people with breast cancer plan their funeral arrangements to ensure that their wishes are followed and their chosen family are included. You may want to ensure the legal rights of your partner/s or chosen family after your death. This can be through marriage, a power of attorney, or a written will lodged with a solicitor. See Legal issues for LGBTIQ+ people with cancer

Acknowledgements

These materials were developed from the Out with Cancer Study, conducted at Western Sydney University, and funded by the Australian Research Council. Thanks are offered to the Out with Cancer study committee members with lived experience of cancer, BCNA LGBTIQ+ consumer representatives, ACON and LGBTIQ+ Health Australia who contributed their time and expertise.

BCNA's LGBTIQ+ project was undertaken with support from Cancer Australia through the Supporting Women in Rural Areas Diagnosed with Breast Cancer program.

Resources

• Cancer Council - LGBTIQ+ People and Cancer. The Cancer Council NSW has detailed  information on its website including a downloadable book that will help you understand how cancer and its treatment may affect LGBTQI+ people – lesbian, gay, bisexual, transgender, queer, and other diverse sexualities and genders, as well as people with intersex variations.
• BetterHealth - Palliative care for the LGBTI community. The BetterHealth Channel has developed a list of some palliative care services that provide safe, inclusive care for people who identify as LGBTIQ+.
• Podcast: How palliative care can help - symptom management. In this episode, BCNA Community Liaison Marie Pandeloglou, joined by Medical Oncologist and Palliative Medicine Physician Associate Professor Michael Franco, shares her palliative experience with us. As Marie finds, we discuss palliative care as a holistic approach to symptom management involving a multidisciplinary team, when to access palliative care, what the costs are and so much more. Marie died in February 2021. She was happy for us to continue to share this content and her story.
• My Aged Care - Support for LGBTIQ+ people. My Aged Care have developed information about supports available for LGBTIQ+ people to access aged care services that are responsive and respectful of their care needs.