Research by Marie Curie shows that nearly 74 per cent of LGBTQ+ people are not confident that health and social care services provide adequate end of life care for their needs. Why is this happening, and what is being done to address this? We speak to two hospices to find out.
Dawn Stirk is the Listening, Support & Bereavement Services Administrator at Rowcroft Hospice in south Devon. She explains that barriers to accessing end of life care go back to experiences with primary healthcare. “By the time people get to end of life a lot of the time they’ve already encountered so much prejudice and discrimination they think, ‘do I really want to put myself through this again?’”
“An example is a healthcare worker that says ‘tell me a bit about yourself.’ The other person thinks ok, I’ll trust them, and they tell them they’re from the LGBTQ+ community, and the face of the healthcare worker says that’s fine, but the eyes express something different and the prejudice is showing. There are also cases of people being inadvertently outed on a ward where there’s lots of people, when they really didn’t want to come out.”
Undoubtedly huge strides have been made over the last few decades, but there is still a lot of work to be done. “I came across one person who had been diagnosed with cancer, and her family never accepted her for being a lesbian. They actually made comments like, ‘I hope the cancer kills you.’ I cannot believe that people still act like that, but the more I researched the more I thought that this is what we’re fighting against – how do we get this person through our door if she’s treated like this by her own family?”
Added to this is the fear many people still have of hospices and the misunderstanding of what palliative care is, leading to a reluctance to access care, and therefore potentially to a poor end of life experience. “The danger is that people either don’t engage at all or are very guarded with what they tell us, because if they’ve lived a large part of their life as a secret because they’re afraid of the consequences, they’re either not going to get the level of treatment they could have, or we can’t come up with an adequate package of support.”
Dawn says this makes their roles as end of life care professionals more difficult, but also more important, “because we have a duty to make them feel comfortable. Whatever happened before, that’s not us, we work in a very different way.”
In a survey she drew up for the hospice’s clinical staff, Dawn asked what they needed to feel better able to support LGBTQ+ people. The responses were overwhelmingly about how to communicate better.
“When I started this work a lot of people said that we treat people the same, so why do we have to look at different communities? I said that’s a great starting point, but to give everyone the same level of care we need to think about who the person in front of us is, and if it’s someone from the LGBTQ+ community we need to think about the kinds of prejudices they’ve experienced or if they’re still living part of their life as a secret.”
Dawn put together a resource called ‘Hearing the Voices of’, based on real experiences of LGBTQ+ people. It’s available to all the hospice staff as well as the local hospital trust, and has received very positive feedback. It also led to a review of the hospice’s own HR documentation to make sure internal practices were in line with the guidance.
Royal Trinity Hospice in south London has implemented a mixture of formal and informal policies to make the hospice as accessible as possible. CEO Dallas Pounds tells us how the simple act of wearing a symbol can have a profound effect. She explains that one patient, seeing the rainbow badge their doctor was sporting, burst into tears. “He just said, ‘Oh my goodness, I’m so relieved, I can be who I am here. I don’t have to hide or pretend.”
They also reassessed their use of language and imagery, and shared information via blogs and podcasts. “We’ve really tried to make information as available as possible to all of our staff. We also put in non-binary toilets, and we are open about accessibility to LGBTQ+ people on our website. We have little rainbows dotted around the building. But I think most powerful were the external speakers who came in, told their stories and were willing to be asked some quite difficult questions by the staff. They didn’t just talk about hospices and death and dying, they talked about how it feels to be someone who has this sexual orientation and this gender identity, so it was more about us as individuals and as members of society.”
Last year they took a similar approach to raising awareness of disabilities, age, gender reassignment, and mental health, which led them to win the Investors in Diversity award.
They’re also founding members of the London Hospices LGBT Network. “LGBTQ+ within the hospice world is still struggling to find its voice” Dallas says. “Working in hospices we believe that we give great individualised care and we’re accessible to everybody, but there are still some people that don’t feel LGBTQ+ needs to be given any separate attention, due to the religious nature of their hospice, their values, or they think society has moved on. The network provides its members with peer support for going back to their places [of work] and trying to do great things.”
“Society has moved on an incredible amount, but we have to be mindful that the vast majority of the people we’re looking after are older, they’ve lived through Section 28, and riots, and through Pride when it was still a political statement. They still live with a fear of discrimination and we have to be mindful that we are still caring for a generation where LGBTQ+ issues are very live.”
“We need to consider individuals as individuals, really call out discrimination and hold ourselves to account for whether we truly are accessible, and are truly acting in non-discriminatory ways through recruitment, our promotional staff, our senior management representative, our board representative. I mean LGBTQ+ but I also mean black and ethnic minority groups, age, gender, other genders. We have to stop assuming that we’re great because people tell us we’re angels in the hospice world. We need to take a critical reflection of ourselves on a regular basis, collect data in a more meaningful way, and use that data to make sure we’re representative of the populations we serve.”
Pride runs until June 30th
For more information on tackling inequalities in end of life care visit Care Committed to Me