Terminally ill LGBT+ people should feel comfortable being themselves at the end

‘She’s my wife, not my friend.’ 

I can’t remember how many times I had to repeat this to healthcare providers. 

On the good days, my wife Sandra and I would be met with horror as people made a huge deal about correcting themselves and feeling guilty for their assumptions. 

But when you’re feeling fragile and traumatised and facing losing the person you love, you don’t always have the fight to correct people. Or have the energy to make those who are meant to be looking after you feel better. 

Being in and out of medical settings for three years, Sandra and I experienced the good, the bad and the ugly of the system.

We often did playful TripAdvisor style ratings. Thing like, ‘Attitudes of staff today, a solid 4/10 this time’, or, ‘Not a warm welcome – definitely a low 3!’

Sandra was first diagnosed with primary breast cancer in 2006. She’d been given the all clear by the time we met in 2014. 

But In 2018, it all came back, and she was diagnosed with stage 4 cancer. We got married soon after – a terminal diagnosis can really highlight what’s important and how short time is. 

By June 2021, after years of difficult treatments, chemotherapy and facing one bit of bad news after another, Sandra went to the Marie Curie Hospice in Liverpool for help managing her symptoms and pain levels, and she spent her last few months there until she died in August 2021. 

Sandra had always begged me not to let her go into a hospice. She had a strong idea that she wanted to die in the familiar surroundings of our own home and she didn’t want to be in a hospital or medical setting.

But her opinion completely changed when she visited for the first time – she felt like she had come home. 

Walking into the hospice, Sandra and I both felt immediately at ease, accepted, respected and celebrated as a married lesbian couple. The hospice looked great – there was a unique homely feel, beautiful gardens with fresh flowers and the staff radiated pure love. 

Sandra was really happy to see a rainbow pin on the nurses’ lapels, and a rainbow lanyard around their necks. It reassured her that she wouldn’t have to challenge behaviour or attitudes and could talk openly about her life, our love and relationship. 

Sandra was an avid campaigner throughout her life and set up multiple LGBTQ+ youth groups and helped thousands of people in these communities feel safe and welcomed. 

It was immeasurably important to her at the end of her life to feel she could be fully who she was. 

Sadly, it isn’t the case for everyone. 

Often, forms to fill in your personal details in healthcare settings are totally out of date and exclude the non-binary and trans community – alongside the assumption of your sexuality based on the heterosexual norm. 

Discrimination against LGBTQ+ people is common in many healthcare settings – a time when we can feel at our most vulnerable. This can present barriers to supporting someone in the way that is right for them when they are part of the LGBTQ+ community and at the end of their life. 

Such barriers may include a fear of discrimination, fear of not being accepted or respected, and assumptions about their identity, leaving them hesitant to truly be themselves. A negative past healthcare experience could mean someone might put off seeking help when they need it, or mean they are less likely to disclose personal information such as their sexuality to health care providers, which can limit opportunities for person-centred care. 

Lesbian, gay and bisexual people are more likely than heterosexual people to assert that being surrounded by friends would be a top-three priority at the end of their lives, according to new research from end of life charity Marie Curie and Superdrug. 

For many in the queer community, our friends are our family, and this is often not acknowledged, especially at end of life. Healthcare settings often ask who the closest family member is or don’t see friends as a primary source of support – this has been the case for me in the past.

There were times I’d ring up a ward and they immediately ask, ‘are you family? We can only give out information to relations’. And I wanted to say ‘yes I am! I’m chosen family!’ For some people, their friends are their family, so I think the definition should definitely be expanded in healthcare settings. 

My incredible wife was a powerful and inspiring force in this world, and would always be fighting to bring about systemic change

One myth about terminal illness is that you get one terrible diagnosis, and then you’re free to live your best life. There’s this romanticised idea that you have these beautiful times together, walking along beaches and into the sunset, and then you die. 

The reality is often a series of devastating losses and traumas each day after diagnosis. Life can be dominated by scans and waiting around in hospitals for weeks on end, waiting anxiously for the next result or treatment. 

Sandra faced the loss of her job as a social enterprise leader in Merseyside, which she loved, the loss of her former identity, of her future dreams and plans and finally the loss of independence and control over her own body and her mobility. 

At the hospice, people asked her about her life, recognised what an amazing person she was and saw her as more than just a vulnerable patient. This was very important as she maintained a sense of who she was and how inspiring she was right up to her death. It kept her going, Sandra felt happy. She was able to leave this world feeling seen and for me, that was hugely comforting. 

It makes me sad to think that many people facing the end of life may not feel safe or comfortable enough to show up fully as themselves and that trans and non-binary people are misgendered and treated in disrespectful ways at such an important time in their journey. 

My incredible wife was a powerful and inspiring force in this world, and would always be fighting to bring about systemic change. 

Health and social care professionals could and should recognise that people from LGBTQ+ communities may have different needs and desires and this is easily achieved with some tiny changes – such as training for healthcare professionals to help them recognise and support cultural needs, ensuring healthcare professionals have open conversations about who their patients want around them for support, and including ‘friends’ in healthcare materials. 

I want everyone to experience care that enables them and their closest ones to feel safe and celebrated like Sandra and I eventually were. I’ll never forget it.

Marie Curie and Superdrug’s report ‘We don’t talk about death enough: LGBTQ+ People’s Perspectives on Palliative and End of Life Care’ is available on their website here. You can follow Sandra’s story and Clare’s grief journey here.

Clare has also founded a support group and awareness raising project for other lesbians who have lost a partner called the Bad Lesbian Widows Club.

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