Palliative care

Palliative care is person-centred care that helps people with a progressive, life-limiting illness to 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, 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 (see Dealing with discrimination).

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.

Learn some ways to identify LGBTQI+ friendly services.

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.

→ READ MORE: Advance care planning

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