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.
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Key points
- Some 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 the patient wants them to be involved in their care.
- Ask questions about someone’s relationships, sexual orientation or gender identity when it’s relevant to 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.
What does LGBTQ+ stand for?
LGBTQ+ stands for lesbian, gay, bi, trans, queer or questioning, and other sexual orientations and gender identities.
Everyone is different
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.
Using LGBTQ+ terms
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 OK to ask someone which term they’d prefer you to use when it’s relevant to their care.
What is sexual orientation and gender identity?
Sexual orientation describes someone’s sexual or romantic attraction to other people. For example, people may be gay, lesbian, bi or straight/heterosexual.
Gender identity is someone’s sense of their own gender. For example, man, woman or non-binary. This may be different from the sex assigned at birth.
Sexual orientation and gender identity are different things. For example, someone can be a trans man and gay.
What if I make a mistake?
It’s OK if you use the wrong term by mistake. If this happens, you can acknowledge the mistake, apologise, correct yourself, learn the person’s correct term, and move on. Try not to make a big deal out of it.
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, including when accessing healthcare services.
LGBTQ+ people may worry about:
- their partner or the people important to them not being involved in decisions or updates
- professionals avoiding them, providing minimal care or rushing their care
- professionals not asking relevant questions because they feel uncomfortable
- judgemental or negative reactions to their identity or relationships
- being misgendered (someone describing them as the wrong gender or using the wrong pronouns)
- loss of identity, especially if they become unable to care for themselves
- staff or other service users making jokes or mean comments
- physical or emotional abuse
- professionals sharing personal information without permission
- partners, family or friends not getting bereavement support.
All of these things can contribute to someone not getting the healthcare they need.
LGBTQ+ people may have lived in a time or place where it was or is illegal to be lesbian, gay, bi, trans or queer. They may have experienced hostile treatment from the government, the media and from society. Some people may have additional concerns, for example if they think the service is linked to a church or religion and they think the religion may not be accepting of them.
Treating a person badly or unfairly because of their sex, sexual orientation, gender reassignment, marriage or civil partnership, is discrimination. This is against the law in the UK.
Other identities and protected characteristics
Some LGBTQ+ people have other identities or protected characteristics that may make them more vulnerable or worried about discrimination or abuse. This includes LGBTQ+ people who are disabled or have a disability, people with religions or beliefs, and people from ethnic minority groups. It can help to be aware of experiences or identities that people have, and what that means to them as an individual.
Should we just treat everyone the same?
No. Some LGBTQ+ people will have barriers to accessing care, including past experiences of discrimination. So, we need to think about the individual’s needs and experiences to provide person-centred care. You should also think about what you can do to reduce their barriers to care and address their concerns.
Language and communication
Here are some things you can do to avoid making assumptions and help people feel more comfortable. You can use these tips for everyone:
- Ask “Who is important to you?” or “Do you have a partner or spouse?” or “Who supports you?”. Avoid asking if someone has husband, wife, boyfriend or girlfriend .
- Ask “Who is with you today?” of “And who are you to [the patient]?” if you do not know. Do not assume what you think their relationship is – for example, “Is this your brother/husband?”
- Use the name and pronouns someone uses for themselves, even if this is different from their records. You can ask if they’d like you to record this in their notes.
- Consider including your pronouns (see What are pronouns? below) when you introduce yourself. 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”.
- If someone uses a term you do not know, you can look up what it means (see What does LGBTQ+ stand for? above).
What are pronouns?
Pronouns are how we refer to people or their possessions when we’re not using their name – for example, he / him / his, she / her / hers, they / them / theirs.
For example:
- He has asked for a review.
- Have you prescribed her medicines?
- They have been referred to the service.
Pronouns are often based on someone’s gender. Women often use she/her pronouns and men often use he/him pronouns. Some people use ‘they/them’ pronouns as gender-neutral pronouns.
Some people are comfortable with different pronouns or do not have a preference – for example, they might feel comfortable with the pronouns ‘he/him’ or ‘they/them’.
Why are pronouns important in palliative care?
Using someone’s correct pronouns is an important part of providing personalised and respectful care. It can help people to feel safe and acknowledges their identity. It can make people more comfortable being open, which can improve their overall care.
Tips on using pronouns
- You should use the pronouns people use for themselves.
- If you’re unsure, you can ask them what their pronouns are.
- It is up to the person whether they want to share their pronouns with you.
- If you get someone’s pronouns wrong, apologise, correct yourself, move on, and make an effort to use their correct pronouns.
- People may use different pronouns around different people, including their family or friends.
The Hospice UK handbook has more information on asking someone about their pronouns, displaying pronouns at work, and what to do if you misgender people.
Next of kin and making decisions
Ask the patient who they’d like to be involved in their care, and how much involvement they’d like them to have. LGBTQ+ people often have families of choice or chosen families – this might include partner(s), ex-partners and friends.
It’s important not to assume that patients will want their biological families or families of origin involved in their care.
They may want to make a Power of Attorney (legally choose someone to make decisions if they are unable to).
Asking about sexual orientation or gender identity
You may need to ask about someone’s sexual orientation or gender identity. This may be as part of your standard forms or questions. Or it might be because it’s relevant to the person’s specific care needs.
Before you ask questions:
- Try to develop trust and rapport with the patient or their family or friends.
- Speak to the person in private – they may not feel safe of comfortable sharing information in front of others, including with some of their family or friends.
- Explain why you’re asking these questions - for example, “We ask everyone about their sexual orientation and gender identity so we can learn more about who we are supporting”, or, “I’m going to ask about hormone therapy so I can check if the medicines I prescribe are safe and effective for you.”
- Acknowledge that some of the questions may be sensitive or personal.
- Say that the questions are optional – for example, “You do not have to answer this right now if you do not feel comfortable sharing this”.
- Consent – talk to the person about how their information will be recorded and shared.
- Familiarise yourself with the meaning of any terms you are using.
When you ask questions:
- Give people the opportunity to choose their own words to describe themselves. For example, say “How would you describe your gender identity?” or “Which of these options describes how you would identify?” rather than “Would you say you’re gay?”
- Reflect the language the person uses when recording or sharing the information.
- Offer support – remember that people may feel stressed or worried about sharing personal information.
If you do not feel confident asking questions, speak to your manager. You may benefit from training or support. Things like practising conversations may help.
Consent to share information
Ask for the patient’s consent before sharing personal information with colleagues, or writing it in their care plan. You should only share and discuss someone’s sexual orientation or gender identity if it is relevant to their care.
The person may not want you to tell others, including their family or friends.
Sharing that someone has a Gender Recognition Certificate can be illegal
A Gender Recognition Certificate (GRC) is a legal document recognising someone’s affirmed gender. It means that a trans person can update their birth certificate to reflect their affirmed gender, rather than the sex given to them at birth.
Sharing that someone has a Gender Recognition Certificate can be a criminal offence without the person’s consent. So, it’s important to make sure you’re carefully following guidance if you think this is clinically necessary.
Supporting trans and gender diverse people in palliative care
Everyone is an individual and has different needs and preferences. Here are some things to consider.
Communication:
- Respect people’s name and pronouns (see What are pronouns? above).
- Create open and supportive conversations to learn about someone’s gender identity, what they want from their care and what’s important to them.
- Be mindful of how any information is shared or recorded (see Consent to share information above).
- Ask people about their gender history or gender-affirming treatment when it’s relevant to their care. For example, to interpret test results, prescribe medicines or for catheter use.
Personal care:
- Support people with any personal care they need in a respectful manner.
- Support people to maintain their identity – this may include supporting them to dress or manage their hair or make up.
- Be aware that people might present differently around different people or at different times.
- Understand fears and concerns people might have – people may feel especially vulnerable with someone else helping with their personal care.
- Understand that everyone is different – some people may have had gender-affirming treatment and/or surgery, and others may not.
Mental health:
- Be aware that trans and gender diverse people are at risk of depression, anxiety, suicide and disenfranchised grief (grief that is not acknowledged or validated). Offer emotional and spiritual support, including grief support.
Starting or continuing gender-affirming treatment
Some patients may need support to start or continue gender-affirming treatment when they have a terminal illness. Gender-affirming treatment is treatment that changes someone’s physical characteristics so they align with the person’s gender identity. For example, treatment that changes someone’s facial and body shape, facial and body hair, voice or genitals. Examples of gender-affirming treatment include hormone therapy, surgery and voice therapy.
Everyone is individual – some trans or gender diverse people may not have had or may not want any gender-affirming treatment. And some people may have some treatments but not others.
It’s important to make sure the person’s needs, values and preferences are listened to.
If you do not have experience with this and need support, speak to your manager or a gender identity specialist. You can record the person’s wishes in their advance care plan with their permission.
If the patient has cancer, you or they can contact the UK Cancer and Transition Service for support, advice and recommendations.
Single-sex facilities
Your place of work may have single-sex facilities – for example, men’s or women’s toilets, bays or wards. Any LGBTQ+ person may worry about safe access to facilities, and this particularly affects trans and gender diverse individuals.
Here are some things you can do:
- Be sensitive and respectful when having conversations about single-sex facilities. Remember that this might be upsetting or stressful for the person who needs care.
- Proactively find out what people’s options are in your facility and your current policies.
- Do not make assumptions about people’s gender identity or gender history.
- If someone asks you where the toilets are, you can tell them what’s available, rather than telling them what they should use.
- If you’re admitting someone and you have single-sex bays or wards, check your policies or speak to your manager about what the options are. Always treat the patient with care and respect.
Making plans for the future
Planning for the future may be particularly important to make sure that the patient’s wishes and identity is respected. For example, some people worry that how they have their clothes, or hair would not be respected if they are not able to do these things themselves.
You can support the patient with making:
- an advance care plan – including their preferences for care and next of kin
- a Power of Attorney – choosing someone to make decisions if they are not able to
- a Will – making plans for any money, possessions, children or pets
- funeral plans – any plans respect and celebrate the person’s identity and beliefs.
The name and gender on someone’s death certificate
Some LGBTQ+ people worry that the name or gender assigned to them at birth will be used on their death certificate. This may be something that they speak to you about or need support with.
With their permission, it can help to record their wishes for this. We have more information in our booklet,** Getting care and planning for the future when you’re LGBTQ+**.
Providing better care for LGBTQ+ people
Be aware that someone may have had difficult past experiences, including homophobic, biphobic or transphobic abuse. It’s important to be sensitive and respectful.
There are more resources and training under LGBTQ+ resources in palliative care and LGBTQ+ training in palliative care below.
You could attend any training offered by your organisation, such as LGBTQ+, unconscious bias and conscious inclusion training.
Trauma-informed care
Some LGBTQ+ people will have experienced trauma in their lives, including threats to their identity or safety. These traumas can have an impact on people’s physical and mental health, and can be a barrier for accessing care and support.
Trauma-informed care is a way to make sure that your care does not re-traumatise the person. It can help to be aware of the experiences people may have had and actively try to create a safe and empowering environment for them. You can find out more from GOV.UK or under LGBTQ+ resources in palliative care and LGBTQ+ training in palliative care below.
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.
Policies and training:
- Have policies and procedures in place to protect LGBTQ+ people from discrimination.
- Provide staff training and updates on what to do if they witness or experience discrimination, and how to support those involved.
- Encourage staff to attend training and show they’re committed to LGBTQ+ inclusion, for example by wearing rainbow lanyards or badges.
- Provide training and self-education resources for staff.
Communication and marketing:
- Include LGBTQ+ people in printed or online information about your service.
- 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. See the LGBT Foundation guide below for more information. 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.
- Encourage staff to add their pronouns to introductions and email signatures.
Facilities:
- Consider your facilities (including toilet, changing or ward facilities) for trans, non-binary and gender diverse individuals. This includes staff, volunteers and patients. Advertise what facilities you have so people know what to expect.
Support LGBTQ+ staff:
- The Hospice UK handbook (see LGBTQ+ resources in palliative care below) has a useful section on workplace and staff support for trans and gender diverse individuals.
Supporting partners, family, and friends
It can help to know that LGBTQ+ people may have a range of support networks – for example, some people will have more support from friends and less support from their family of origin. Some LGBTQ+ people may also have smaller support networks, so it’s important to make sure any family and friends are getting support for themselves.
Here are some ways you can support the people important to the patient:
- Ask the patient who is important to them and who cares for them.
- Actively involve them in discussions and updates about care with the patient’s consent.
- Involve them in making decisions if the patient has expressed their wishes for this.
- Ask them what support they are getting and signpost them to pre-bereavement and bereavement support.
If you witness or experience discrimination in palliative care
You may hear or see someone being treated unfairly or badly because they are LGBTQ+.
This can include disrespectful care, inadequate care or abuse. It can also include inappropriate or offensive jokes, questions or comments about people’s sexual orientation or gender identity. It may include not involving someone’s partner in decisions or conversations because they are in a same-sex relationship.
It could be intentional or unintentional. It may be from staff, volunteers or other service users. And it may be directed to or about staff, volunteers or service users.
If it’s safe for you to do so, you can:
- make a note of what you heard or saw
- report what has happened to the appropriate person
- follow your organisation’s policies and procedures, including on safeguarding, complaints, discrimination or harassment
- speak to your manager if you’re not sure what to do.
Even if the discrimination was not directed at you, you might find that it affects you personally. This is sometimes called discrimination by harassment.
Experiencing discrimination
You may have been discriminated against based on your sexual orientation, gender identity or another protected characteristic. You may feel vulnerable and not be sure what to do. It’s important to get support and advice. You can get free support and advice from Acas or, in Northern Ireland, the Equality Commission.
It’s up to you whether you report something or not. Do what feels right and safe for you. Whatever you do, it’s important to look after yourself.
Looking after yourself
Seeing, experiencing or reporting discrimination can have an impact on you. This might be particularly hard if you’re LGBTQ+. It’s important to get support for yourself. It may help to talk about what has happened and how it’s affected you.
You can get support from:
• any family, friends or your wider community
• colleagues that you trust
• any employee support or assistance programme
• free support lines, such as Switchboard or Galop.