Understanding palliative care needs of the LGBTIQ+ community 

LGBTI is an acronym that is used to refer to people of diverse sexualities, relationships, genders and bodies. LGBTI people experience some issues which are uniquely related to their social experience and identity.

NB: LGBTI refers to issues broader than sexuality. People who are transgender, gender diverse or intersex may describe themselves as heterosexual and therefore not a minority sexual group. Intersex is also not a gender. Some people with Intersex variations may self-identify as male or female, as intersex or as non-binary. Some people who have intersex variations may describe themselves as transgender.


Relationships with health care providers

Health professionals need to be aware of the issues faced by some members of the LGBTI community when providing care. Not all issues highlighted here are valid for all LGBTI individuals but awareness of greater risk factors or propensity to some illnesses is needed.

Being part of a minority sexual group influences patterns of health. In health consultations, not all individuals will volunteer their sexual orientation or identity. Some individuals will ‘screen’ healthcare professionals before engaging in a relationship, or will go to someone that has been suggested to them. By telling you of their sexual identity, this person is putting a large amount of trust in you as a health professional. Ask what kind of support they would like from you, and what is important to them at this time. It is important to use the client / patient’s words back to them and not make assumptions regarding partner, girlfriend / wife, boyfriend / husband etc.

Health professionals are sometimes uncomfortable with providing services to LGBTI individuals. Ethically responsible health professionals will ensure that this does not result in subsequent discrimination and substandard care. Patients may also become unfairly stigmatized by health professionals when a medical diagnosis such as HIV AIDS, is assumed to have been contracted through IV drug use for example. Health professionals have a duty of care to educate and advise patients of how to reduce the risk of their disease to themselves and others, but not to be judgemental of others choices.

Particular health concerns for LGBTI individuals

LGBTI individuals do not always access health screening services, consequently being at greater risk of developing some cancers (eg, lesbian women experience higher rates of breast cancer, and gay men, particularly those with HIV, experience higher rates of HPV-related cancers including penile and anal cancers).

Higher rates of mental illness have been reported among lesbian and bisexual women and same sex attracted youth (especially males) who have high rates of distress, despair and suicide. Substance misuse often complicates mental illness for gay and lesbian people, as those with higher levels of distress are more likely to self-medicate with alcohol and other drugs.

Bisexuals are also reported as experiencing high levels of abuse or violence discrimination (also from gay men and lesbians) and ill health. Discrimination affecting the transgender community (which includes transsexuals, cross-dressers, and some individuals with intersex variations) have been reported in relation to health care, (such as accessing transgender procedures), housing and employment.

HIV AIDS has long been an issue for many LGBTI individuals. There are now many people living with HIV who have done so, or will do for many years. The key health and social problems for most HIV positive people now relate to managing a complex chronic disease, rather than an inevitably terminal illness with a short prognosis.

There are specific problems related to providing appropriate aged care services for the LGBTI community. Older people generally are not viewed in terms of their sexuality, and are likely not to be asked about it. Many older LGBTI individuals lived through very hostile overt discrimination in their early years. They may be less open regarding their sexuality as a result. Homophobia and heterosexism are common in aged care systems with for example, lack of available supported accommodation for elderly same-sex couples.

Relationships with family and end-of-life decisions

Some LGBTI individuals are not in close contact with their family of origin. Some have no children, or have children who do not accept their life decisions. All of this can impact at the end of life, meaning that for those LGBTI individuals who are relatively isolated with few practical support networks, their options for where they can be cared for are reduced. Equally, others have strong family and social networks, may reconcile with family, old friends or with children.

Not all individuals are open about their sexuality. Family and friends may not be aware of relationships, and long-term friendships may not be recognised for what they are. This may mean the person who is ill, or their partner, may not be openly acknowledged. They may be unknowingly, and even knowingly, excluded. It may be the responsibility of health professionals to recognise a partner’s rights in end-of-life decision making in the face of family opposition or ignorance. Some people may be in relationships with more than one person which could include someone whose gender identity is different to the person’s. Often these other relationships are not recognised.

In end-of-life decision making, the preferences of the person who is ill to have a partner advocate for them may not be recognised by their family. Same sex partners may not be recognised either socially or legally. This could be in respect to carers leave, as next of kin in decision making, in business matters, decisions about burial or cremation, and access to the body of the partner while dying or after death. This may also include rights to benefits after a partner has died. LGBTI people in relationships which are not recognized under the law may need to give power of attorney to their partners to ensure they are not excluded from participating in important decision making about the care of their partner.

Care at home at the end of life may be difficult for LGBTI individuals. They may need to ‘come out’ to health professionals at this time regarding their living arrangements. They may be judged in a negative light for their sexuality or for their lifestyle choices, resulting in unsatisfactory communication between carers and health professionals.

Bereavement

There is a lot of literature from the early years of HIV AIDS when bereavement issues associated with multiple ongoing losses was first acknowledged. Much of this is still relevant in relation to loss of a same sex partner and what that entails.

Death of a life partner and the subsequent bereavement period is difficult for anyone. For those in a same sex relationship, there are other issues to be considered. A LGBTI individual may not be recognised as bereaved. This is especially true if their relationship was not known or acknowledged. Health professional, family and social support may be lacking during this time. It is important that same-sex partners are offered the same support that heterosexual partners would receive. They should not have to ask for it when they are already distressed.

A person whose lifestyle choices are not accepted, or a person who transitions can also be considered to be bereaved if they lose contact with children, family and friends.

Last updated 20 August 2021