Palliative and end of life care for LGBTQ+ people
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Everyone living with a terminal illness should have access to high-quality palliative and end of life care. There are things you can do to provide a safe, accepting and inclusive environment. This is essential in ensuring LGBTQ+ people receive high quality, person-centred care.
People living with terminal illnesses are already often at their most vulnerable, so we have a duty to address the attitudes and behaviours that contribute to negative experiences of care.
What does LGBTQ+ stand for?
LGBTQ+ stands for lesbian, gay, bi, trans, queer or questioning, and other sexual orientations and gender identities. Read more about what these terms mean.
LGBTQ+ people are individuals with different backgrounds, experiences and identities. It's important to recognise this, to be able to understand people's different palliative and end of life care needs.
LGBTQ+ terms and their meanings
Familiarising yourself with the terms people use to identify themselves, can help you provide care that is inclusive of all LGBTQ+ people. It's important not to assume that someone will feel comfortable being described as one of these terms, unless they use it themselves. These terms will mean different things to different people.
It's okay to ask someone which term they'd prefer you to use. And it's okay if you use the wrong term by mistake. If this happens, you can acknowledge the mistake, correct yourself, learn the person's correct term, and move on.
LGBTQ+
LGBTQ+ is an abbreviation that includes the following terms:
- Lesbian – women who have romantic or sexual attraction towards women. Some non-binary people may also identify with this term.
- Gay – men who have romantic or sexual attraction towards men. Also a general term for lesbian and gay sexuality. Some non-binary people may also identify with this term.
- Bi – people who have romantic or sexual attraction towards more than one gender. Bi people may describe themselves using a variety of terms including but not limited to: bisexual, pansexual and queer.
- Trans – people whose gender is different from, or does not sit comfortably with, the sex they were given at birth. Trans people might describe themselves using a range of terms, including but not limited to: transgender, transsexual, gender-queer, genderfluid and non-binary.
- Q – queer or questioning.
- Queer – a term used by people who do not want to use specific labels to describe their sexual orientation or gender identity. In the past, queer was used as an offensive term for LGBT individuals. Some people no longer see it as an insult, but others still do.
- Questioning – the process of someone exploring their own sexual orientation or gender identity.
- The + represents other identities including but not limited to: pansexual, asexual and intersex. See below for definitions of these, and other terms.
More terms and their meanings
- Asexual – people who do not experience sexual attraction. Some asexual people experience romantic attraction while others do not.
- Cisgender or cis – people whose gender identity is the same as their sex given at birth. Some people also use the definition non-trans.
- Families of choice – the important people around an individual who give them care and support. They may be intimate partners, friends, or family members. This is different from families of origin, which describes a network of family relationships such as parents, children and spouse.
- Gender – a social construct often expressed in terms of masculinity and femininity. Gender is mainly culturally determined, and assumed from the sex given at birth.
- Gender fluid – a term used by people whose gender changes throughout their life. This could be on a daily/weekly/monthly basis, and will be different for everyone.
- Gender identity – a person's sense of their own gender. This may or may not be the same as their sex given at birth. Someone might identify as a woman, man, non-binary, gender fluid, gender queer or others.
- Gender queer – a person whose gender identity is not male or female. It may be between or beyond genders, or a combination of genders.
- Heterosexual or straight – a person who is attracted to people of a different gender to their own. For example, a woman who is attracted to a man.
- Intersex – people who may have biological features of both sexes, or whose biological features do not fit with society's assumptions about male or female. Intersex people might identify as male, female or non-binary.
- Non-binary – a term for people whose gender identity does not sit comfortably with man or woman. Non-binary identities are varied. A non-binary person might consider themselves to be neither man nor woman, both, or sometimes man and sometimes woman.
- Pansexual or pan – refers to people whose romantic or sexual attraction towards others in not limited by sex or gender. Someone who is pansexual may be attracted to women, men and people who are non-binary.
- Pronouns – words used to refer to a person you're talking about. These are often gendered, for example he or she. Some people may use gender neutral pronouns such as they/their, ze/zir or others.
- Sex – given to people at birth based on their physical anatomy (genitals) and reproductive function, often as male or female.
- Sexual orientation – describes people's sexual attraction to other people (or lack of sexual attraction).
Other LGBTQ+ abbreviations
You may see or hear other abbreviations, such as:
- LGBT – lesbian, gay, bisexual, transgender
- LGBTQIA+ – lesbian, gay, bi, trans, queer/questioning, intersex, asexual + other identities
- GSRD – gender, sexuality and relationship diversity. This includes relationship diversities such as non-monogamy, which is having more than one intimate relationship at the same time.
The terms listed above are not the only ones used by LGBTQ+ people. Terms that people use to describe themselves can change over time, so it's helpful to keep up to date. Find more terms that people use on Stonewall's website.
Issues LGBTQ+ people face during their care
Palliative and end of life care needs include:
- symptom management, such as pain
- spiritual needs
- emotional needs.
LGBTQ+ people may face additional challenges and barriers to getting the high-quality care they need:
Fear of discrimination
Some LGBTQ+ people delay accessing or do not access palliative and end of life care services, due to fear of discrimination. This is due to their experiences – many LGBTQ+ people experience discrimination and abuse in their everyday lives.
And older LGBTQ+ people may have been alive when it was illegal to be lesbian, gay, bi, trans or queer. They may have experienced hostile treatment from the state and from society. Some people may have additional concerns, for example if the service is linked to a church or religion.
Treating a person unfairly because of their sex, sexual orientation, gender reassignment, marriage or civil partnership, is discrimination. This is against the law in the UK.
Fear they won't be accepted or respected
Some LGBTQ+ people worry that the care they and their partners receive, might be negatively affected if staff find out about their identity. Couples might feel unable to show each other affection in front of staff.
Transgender people may find it difficult to trust health and social care professionals, for example, with personal care. Some transgender people have concerns about what will happen after they die, for example not being buried as their correct gender.
Lack of support for people important to the patient
Some informal carers of LGBTQ+ people feel under increased pressure, providing higher levels of care for longer without support. This is because LGBTQ+ people are more likely to access services later in their illness.
LGBTQ+ partners often feel isolated or unsupported during bereavement. If their relationship is not acknowledged, they may be excluded from the grieving process. This is sometimes called disenfranchised grief. This can affect their mental health and limit access to bereavement support – from services, families and society.
Assumptions about identity
LGBTQ+ partners are often excluded from discussions and decisions about the patient's care. This can happen if health and social care staff make assumptions about people's sexual orientation. For example, assuming a woman's partner will be a man.
Some LGBTQ+ people face additional unnecessary stress when someone wrongly assumes their gender identity. They may worry about discrimination, or how someone will react if they correct them. They might feel they need to hide important parts of their life to avoid this.
Quite often, people assume things in medical settings. Like they'll ask about your husband. Or I'll say I'm ringing about my partner, and they say, "What's his name?"
Supporting LGBTQ+ people
It's important to be aware that sexual orientation and gender identity are important parts of who someone is. They may shape who the person loves, who's important to them and how they need to be cared for.
There are lots of ways you can provide an inclusive and supportive environment:
Language and communication
- Use neutral language and avoid assumptions. For example ask if someone has a partner, rather than a husband or wife, boyfriend or girlfriend. And instead of asking someone who their family or who their next of kin is, ask who's important to them.
- If someone uses a name that's different from the one on their records, use the name they use. Ask if they'd like you to record this name in their notes.
- Consider including your pronouns when you introduce yourself. These might be she/her, he/him, they/them or others. This can help the patient to feel comfortable sharing theirs. You could use 'they/them' until you know someone's pronouns. For example, "They're feeling tired today", "I'll wait for them here".
- Familiarise yourself with terms people use to identify their sexual orientation and gender identity.
Providing care
Ask the patient who they'd like to be involved in their care, and how much involvement they'd like them to have. Remember LGBTQ+ people often have families of choice. It's important not to assume that patients will want their biological families involved in their care.
Ask for the patient's consent before sharing personal information with colleagues, or writing it in their care plan. If someone tells you their sexual orientation or gender identity, they may not want you to tell others.
Making plans for the future
- Ask the patient if they have an Advance Care Plan, and if not ask if they'd like support to complete one. They can include preferences about their care, and who they want to make decisions for them if they're not able to. Read more about advance care planning.
- Speak to patients about the benefits of having an up-to-date Will. Properly documenting their wishes regarding those important to them, may help bring peace of mind. You could let patients know about Marie Curie's free Will-writing service.
- If patients want to set up a Power of Attorney, you could signpost them to organisations that can help. Citizens Advice have advisors to help with this.
Share our information for LGBTQ+ people on planning ahead.
Personal learning and development
Be aware that someone may have had difficult experiences including homophobic, biphobic or transphobic abuse. It's important to be sensitive and tactful. You could read about some LGBTQ+ people's experiences in the links under Useful resources.
You could also go to any training offered by your organisation, such as LGBTQ+, unconscious bias and conscious inclusion training.
What your employer could do
The team or organisation you work for can also do things to support LGBTQ+ people – including patients, carers and staff:
- Have policies and procedures in place to protect LGBTQ+ people from discrimination.
- Encourage staff to show they're committed to LGBTQ+ inclusion, for example by wearing rainbow lanyards or badges.
- Include LGBTQ+ people in printed or online information about your service. For example, include pictures of LGBTQ+ people and LGBTQ+ symbols like the rainbow flag, in leaflets and posters.
- Use inclusive language on any forms patients need to fill in. For example if asking about gender and sexual orientation, it's important to give people the option to self-identify. Forms could also include the opportunity for people to state their pronouns, if they wish to.
- Set up partnerships with LGBTQ+ groups to share knowledge, learn about their needs and increase awareness of your service.
- Provide training and self-education resources for staff.
- Encourage staff to add their pronouns to email signatures.
The first thing I saw on a nurse's badge when I lay on the bed was the LGBTQ+ flag pin. I've seen lots of staff wearing rainbows and immediately that is quite massive. As a lesbian it's sort of like, it's ok to be a lesbian in a hospice and those badges make you think these guys are here as our allies and these guys aren't judging me. Simple things, very powerful.
Supporting partners, family, and friends
Partners
Make sure you actively involve partners in discussions, and keep them informed about their partner's care. Ensure they're included in making decisions if the patient has expressed their wishes for this.
You could also find out what bereavement support partners have already, and signpost them to bereavement services once you've identified their needs. You could provide information about Marie Curie's Bereavement support telephone service.
People caring for the patient
Find out if informal carers feel they have enough support. Try to provide information and signpost support for carers as soon as you can. Having access to support may help to ease pressure and stress they might be feeling. It might also reassure the person dying, to know the people important to them are being supported and cared for.
Share Marie Curie's information for people caring for someone with a terminal illness.
When my partner Terri died, I found myself grieving alone. I didn't know who to turn to – not just as a bereaved person, but as bereaved gay person.
Useful resources
Marie Curie report – "Hiding who I am": The reality of end of life care for LGBT people
Stonewall – a useful glossary of LGBTQ+ terms
Marie Curie nurse Tracey's blog – Supporting LGBT people at the end of life
Blog by Michele Chilvers – Being bereaved and gay
Blog by John Matthews – Facing discrimination as a gay man with AIDS
Information and support for patients and people important to them:
Grief Encounters – a peer support group for LGBTQ people who have experienced a bereavement.
Key points
- Everyone should have access to high quality, person-centred palliative and end of life care.
- LGBTQ+ stands for lesbian, gay, bi, trans, queer or questioning, and other sexual orientations and gender identities.
- LGBTQ+ people access palliative and end of life care services late or not at all, due to fear of discrimination.
- Avoid making assumptions about someone's relationships, sex, gender or sexual orientation.
- Find out who is important to the patient, and how much the patient wants them to be involved in their care.
- Help the patient plan for their future, for example in an Advance Care Plan.
- Speak to your employer about how they can support LGBTQ+ people, such as providing relevant training and forms with inclusive language.
Let us know what you think
Email your feedback to knowledgezone@mariecurie.org.uk
Disclaimer
This information is not intended to replace any training, national or local guidelines, or advice from other health or social care professionals.
The Palliative Care Knowledge Zone is not intended for use by people living with a terminal illness or their family and friends, who should access our information for the public.
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