Helping LGBT people with a terminal illness know what care to expect

A research project funded by Marie Curie has produced a new guide   aimed at helping LGBT people with terminal illnesses understand what care they should expect, and where they can find further support. 

There’s been limited research conducted on the end of life care experiences of lesbian, gay, bisexual and/or trans (LGBT) people.

We still don’t know enough about the challenges LGBT people face or what their specific needs are if they’re living with a terminal illness.

When researchers from the Cicely Saunders Institute   at King’s College London conducted a study, ACCESSCare  , to understand the care experiences of LGBT people and their significant others, they uncovered negative experiences that could be linked to the participants’ sexual orientation or gender identity. 

The research team were also surprised by how pervasive these negative experiences were, irrespective of the participant’s geographical location or age.

From insensitivity to discrimination

Assumptions of heterosexuality were common. This often resulted in a lack of acknowledgement of the nature and depth of their relationships, making their partners feel excluded. 

Lead researcher Professor Richard Harding said: “Some participants described having fears about revealing their sexual orientation, or gender history, and of being subjected to discrimination.

“Some also experienced a lack of recognition of the primary relationship they’re in, and insensitivity from health and social care professionals looking after them.”

Communication issues

Trans people described insensitivity in language used by care professionals.

This included repeated use of the wrong pronoun despite being corrected (for example, ‘he’ instead of ‘she’), and a lack of consideration for their preferences in sharing information about their gender history.

The study also found that previous experiences of negativity, including discrimination, made participants more apprehensive about sharing their sexual orientation or gender history with care professionals in the future.

Awareness and training

In 2016, Marie Curie published a report, Hiding who I am, to raise awareness about the challenges faced by LGBT people at the end of their lives.

Earlier this year, Dr Katherine Bristowe and the ACCESSCare research team published a set of evidence-based recommendations   to help health and social care professionals deliver individualised, sensitive care and support to LGBT people and those close to them. 

To date, the research team has also delivered training to over 1,200 healthcare professionals across England, and presented their findings to the UK and Welsh Parliaments. 

Katherine said: “When we shared our findings with health and social care professionals, there was an overwhelming response from them.

“They were keen to learn more about what they can do to provide better care for LGBT people and those closest to them, and how they can take those extra steps to be more inclusive when they’re providing care.”

A new guide for LGBT people

Using evidence from the study, the ACCESSCare research team has developed a new guide   to help LGBT people get the right treatment, care and support.

The information booklet, created and piloted with support from GMFA   and their community networks, covers a number of topics including: 

  • why your sexual orientation or gender history matters when you’re living with a terminal illness
  • what care you might need and what to expect
  • what to do if you feel you’ve been treated differently because of your sexual orientation or gender history
  • what legal and financial issues you may need to think about
  • what help and support is available for you, and your partner or significant other.

Richard said: “We designed this guide to help LGBT people know what treatment they should expect from professionals looking after them when they have a terminal illness.

“The guide also explains why they should consider sharing their sexual orientation or gender history with their care professionals. We think that this is really important – so they can get care and support tailored to their individual needs.”

For more information about the ACCESSCare study, email or visit the King’s College London ACCESSCare website.

You can also read more about Marie Curie’s report and the end of life care issues for LGBT people