LGBTQI+: what are the barriers and challenges in end of life care?

LGBTQI+ healthcare inequality

Across all areas of healthcare, the LGBTQI+ community have poorer experiences of care than non-LGBTQI+ patients. This can be deeply distressing and traumatic for anyone, but those in need of palliative and end of life care are particularly vulnerable.

People requiring end of life care tend to need more intense care provision, are often old and therefore may be more isolated, and may also be so debilitated by their illness that they are unable to react to - or report - incidences of discrimination.

Despite this vulnerability, there is a large research gap in the UK regarding LGBTQI+ people's experiences of end of life care. Most studies tend to focus on the experience of gay men and lesbian women in cancer care, leaving significant gaps around the issues faced by people of other gender identities as well as those with other diseases.

Alongside cancer care research, reports that look at the attitudes toward LGBTQI+ people in healthcare more generally can help to form a picture of the issues faced by those in end of life care.

LGBTQI+ experiences in end of life care

Sadly, it appears that these worrying trends of unhealthy attitudes towards the LGBTQI+ community extend to end of life care. The identified barriers to palliative cancer care - as well as end of life care - include discrimination, criminalisation, persecution, fear, distress, social isolation, disenfranchised grief, bereavement, tacit acknowledgement, homophobia, and mistrust of healthcare providers.

These challenges can be especially traumatic in end of life care: "Whether it's accidental or intentional, LGBTQI+ people who experience discrimination during end of life care are much more vulnerable," says jane fae, director at Trans Actual.

"For example, hearing someone using the wrong pronouns can be hurtful, but if you are at the end of your life and one of the last things you hear is being addressed as the wrong gender this can be even worse."

Emma Underwood, training officer at Opening Doors, describes how older LGBTQI+ people continue to face enormous barriers: "Assumptions made by providers often leave our communities unable to access the services they need. That could include partners being left out of critical decision-making, or trans people having the gender on their death certificate marked incorrectly. Older LGBTQI+ people often find themselves being let down by those who should be caring for them.

The services that we provide at Opening Doors aim to ensure that our communities have a place to connect with one another, where their voices can be heard and celebrated."

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Common experiences of discrimination, inappropriate care, and lack of knowledge include the following:

In particular, young LGBTQI+ people are often put off from accessing palliative and end of life care services because they tend to be less confident about disclosing their gender or sexuality. Research also shows that older people have a preference for personal end of life care by friends and family, but this is not always financially possible.

How do you create a welcoming environment in LGBTQI+ end of life care?

Despite these issues, end of life care providers have been slow to make changes to improve LGBTQI+ support and create a more welcoming environment.

The Unhealthy Attitudes survey found that, across the entire healthcare sector, many health and social care staff are:

1. Afraid to speak up - 16% don't feel able to challenge discriminatory language and behaviour from their colleagues or patients.

2. Unequipped to challenge prejudice - 72% of patient-facing staff have not received any training on the health needs of LGBTQI+ people, the rights of same-sex partners and parents, or the use of language and practices that are inclusive of the LGBTQI+ community. What's more, only 25% of those trained report that the legal rights of trans staff and trans service users were included.

A third of respondents say that the NHS and social care services should be doing more to meet the needs of lesbian, gay, and bisexual service users. Yet, there are several practical steps that these services can take to improve LGBTQI+ support and provide the end of life care that everyone deserves.