LGBTQI+ people with advanced cancer

Palliative care is person-centred care that helps people with a progressive, life-limiting illness to live as comfortably as possible. 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.

Barriers to inclusive palliative care

After experiencing a lifetime of discrimination and stigma, many LGBTQI+ people 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’ve had when friends had palliative care during the HIV/AIDS epidemic.

Reasons why LGBTQI+ people may avoid or delay accessing palliative care services include:

• a general distrust of health care providers based on past experiences of discrimination
• health care providers assuming that everyone is heterosexual, binary or cisgender, which can make it harder for LGBTQI+ people to have their care needs identified and met
• fear of negative attitudes, being harassed or having to hide their identity
• fear that health professionals will make assumptions about their gender, body or sexual orientation or not affirm their gender
• feeling afraid of being judged
• concerns about their physical safety
• concerns about not receiving respectful personal care
• worry about their partner/s or family of choice being excluded
• social isolation and lack of access to palliative care services
• lack of support with advance care planning
• fears about facing end of life.

Other aspects of identity, such as age, race, culture, disability, and where you live, can influence how you feel about palliative care.

Respectful, inclusive care

All LGBTQI+ people have the right to palliative care that is safe, respectful and inclusive. It is unlawful for palliative care services to discriminate against LGBTQI+ people.

Some LGBTQI+ people who use palliative care services disclose their sexual orientation, gender and intersex variation, while others don’t. It is your decision how much you choose to reveal, but letting your palliative care providers know can help them best meet your needs. Hiding your identity can create another level of stress if you are afraid of being outed.

When looking for palliative care providers, consider asking how they make people feel safe, included and respected. This may provide an opportunity for you to raise any specific care needs relating to your sexual orientation, gender or intersex variation.

Recognising family

Palliative care recognises the importance of involving partners, family and carers in decisions about care. The palliative care team will also provide family and friends with emotional support and referrals to counselling and grief support.

Some LGBTQI+ people are estranged from their family of origin and surround themselves with a chosen family. Other people 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 need to legally appoint one or more substitute decision-makers.

Intimacy and palliative care

Many people say that sexual activity and intimacy remain important to them even when cancer is advanced. It is okay to talk to your health care team about the impact of any treatment on your sex life or your ability to be intimate at any stage.

If you have a partner or partners, try to spend intimate time together, rather than as “patient” and “carer”. If you are in residential palliative care, ask your treatment team if it’s possible to use a double bed so you can have some private time. Intimacy can provide comfort and maintain connection during this time.

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.

Download our booklet ‘Understanding Palliative Care’

When diagnosed with a life-limiting illness, it can be a good idea to plan for your future health care. Discussing your preferences with your family, friends and treatment team helps ensure that your wishes are respected if you lose the ability (capacity) to make your own decisions.

Everyone has their own individual preferences, and these will often change over time. Making your wishes clear can help give you peace of mind, protect your rights and ensure that the people you want involved in your care are included.

The following are steps to take as part of advance care planning:

Prepare an advance care directive – You can write down your goals and instructions for your future medical care in this document. It also provides a record of your values and treatment preferences. Doctors, family, carers and substitute decision-makers must follow this record if you become unable to communicate or make decisions. Depending on which state or territory you live in, it may be called an advance care directive, health direction or advance personal plan.

Appoint a substitute decision-maker – You can legally appoint one or more people to make treatment decisions for you if you are not capable of consenting 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, they may be known as an enduring guardian, enduring power of attorney or medical treatment decision maker.

Appoint an enduring power of attorney – 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.

Make a will – A will is a legal document that sets out what you want to happen to 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 your wishes regarding 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 provided by the law. Although any will can be challenged in court, having a valid will usually means your assets will go to the people of your choice and avoids extra expenses.

Default decision-maker

If you lose the capacity to give consent for medical treatment and you haven’t appointed a substitute decision-maker, consent may be given by a default substitute decision-maker. Depending on where you live, they may be known as the person responsible, default substitute decisionmaker, available consenter, statutory health attorney or medical treatment decision-maker.

The law sets out who should make decisions on your behalf. They are usually approached in the following order:

• guardian – either an enduring guardian you appointed or a guardian appointed by a court or tribunal
• spouse or partner – the most recent spouse, including a de facto partner, with whom you have a close and continuing relationship
• unpaid carer – someone who provides ongoing care
• relative or friend – someone who has a close personal relationship and an interest in your welfare.

For more information on palliative care for LGBTQI+ people, visit LGBTIQ+ Health Australia.

Communicating openly

It can help to have the difficult conversations with your partner/s and family (chosen or otherwise) early, so that you are not rushed into decision-making. You may want to choose what you would like for your funeral, and take an active role in how you will be remembered. It can be easier for both you and your intimate partner/s to have certainty about this early so you can focus your energy on having treatment or feeling your best. It may not necessarily be a comfortable conversation, but it can be proactive, honest and deeply important for those involved.

Each state and territory has different laws about advance care planning. For specific information and advice, call Cancer Council 13 11 20. We may be able to refer you to a lawyer. You can also visit Advance Care Planning Australia or call them on 1300 208 582.

Download our booklet ‘Understanding Palliative Care’