Caring for LGBT people at the end of life

Please be aware - this information is for healthcare professionals

Regardless of sexual orientation, gender, relationship or family status, everyone’s needs and preferences at the end of life will be unique. Therefore, while we are discussing LGBT people’s needs and experiences here, it is important to recognise that not all LGBT people will have the same needs and experiences at the end of their lives.

Who are we referring to when we talk about LGBT people?

The abbreviation LGBT (lesbian, gay, bisexual, trans) covers a diverse group, with very different experiences and needs. Understanding the distinctions between people who identify as LGBT is vital to understanding their end of life experiences.

The end of someone’s life is an emotional and vulnerable time, both for the person who is dying and the friends and family they choose to have around them.

As a health or social care professional, it is vital that you understand the needs of LGBT people and provide person-centred care that acknowledges and supports them in their last months, weeks and days.

Accessing palliative and end of life care as an LGBT person

The Marie Curie report Hiding who I am: Exposing the reality of end of life care for LGBT people features useful definitions of the abbreviation LGBT, as well as other abbreviations, acronyms and groups used by both academics and thought leaders, as well as LGBT people themselves.

This research shows that lesbian, gay, bisexual and trans (LGBT people) face significant barriers to getting palliative care when they need it.

It also shows that many older LGBT people are concerned that service providers and health and social care professionals will be indifferent or hostile to their sexuality or gender identity, or, at worst, actively hostile.

Unfortunately, this leads to people from the LGBT community feeling that palliative and end of life care services are ‘not for them’ or that they will receive worse treatment than their straight peers.

Why is it important for me as a healthcare professional to be aware of end of life care issues for LGBT people? 

LGBT people have a higher incidence of life-limiting and life-threatening disease than people who are not LGBT. The risk of smoking and alcohol abuse is higher among LGBT people, and has been attributed to stress from homophobia, discrimination and marginalisation.

It’s also important to note that LGBT people are more likely to be single, childless, estranged from their birth families and experience damaging mental health problems. These factors are likely to lower chances of an LGBT person receiving stable and on-going informal care, for example from a partner or biological family member.

For some people in the LGBT community, the end of life care you are part of providing could potentially be the only source of support they are receiving. This makes it increasingly important to make sure you are providing patient-centred care to an LGBT person, ensuring their specific needs and choices have been fully considered.

What are some of the key issues experienced by LGBT people at end of life?

There are a number of issues and barriers LGBT people may experience at the end of their life. These include:

Anticipating discrimination
LGBT people access palliative care services late or not at all, either because they anticipate stigma or discrimination or they think the service is not for them.

Complexities of religion and LGBT end of life care
Palliative and end of life care services may not always ensure LGBT patients and their families have the same spiritual needs addressed at end of life as any other patient.

Assumptions about identity and family structure
Health and social care staff often make assumptions about people’s sexuality or gender identity that have an impact on their experienceof palliative and end of life care. Evidence suggests that some clinicians do discriminate on the basis of sexual orientation.

Varied support networks
LGBT people at the end of life may choose to be surrounded by close friends and support groups which represent constructed support networks alongside biological ones. LGBT people can also feel concerned that their loved ones will not be respected and recognised as next of kin.

Unsupported grief and bereavement
Partners feel isolated or unsupported during bereavement because of their sexuality.

Increased pressure on LGBT carers
There is increased pressure on informal carers, because people are accessing palliative and end of life care services late or not at all.

It’s important to be aware that bisexual people and trans people face different kinds of prejudice and discrimination to gay men and lesbian women, so key issues they face at end of life may be different to those listed above. If you’re treating a patient who is bisexual or trans, it may be worth having a conversation with them about their fears and concerns regarding their end of life care, if they feel comfortable discussing this with you.

As a generalist healthcare professional, what can I do to provide better care to an LGBT person at the end of their life?

Marie Curie research shows that two of the most important indicators of good end of life care for LGBT people are whether or not they are receiving care centred around them as an individual, and whether or not their partner is accepted and involved.

If you are providing end of life care to an LGBT person, you could also consider:

  • providing the patient with information that represents diverse groups, including the LGBT community
  • reviewing the language you use when speaking with your patient to ensure you are using more inclusive terms, such as ‘partner’
  • attending training to help you better understand the specific needs and concerns of LGBT people living with a terminal illness, including in the context of home care services
  • making yourself familiar with your employer’s internal policies and practices relating to negative and discriminatory behaviour
  • contacting a local LGBT charity or community group to understand more about end of life care needs and the extra pressures LGBT carers can face
  • being respectful of life choices and preferences.

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