Nurses and other healthcare professionals must do more to cater for the specific needs of gay, lesbian and transgender patients as they near the end of life, says a new report.
The Hiding Who I Am report, published by terminal illness charity Marie Curie, highlights some shocking examples where lesbian, gay, bisexual and trans (LGBT) people were discriminated against and denied sensitive and dignified care.
“It is essential that nurses and other healthcare professionals recognise that LGBT people have different needs”
It draws on the experiences of LGBT people with terminal illnesses and their partners who were gathered as part of Marie Curie-funded research projects by the University of Nottingham and King’s College London.
This included a survey of more than 230 older LGBT people, which found nearly three quarters – 74% – did not feel confident health and social care services could provide sensitive and appropriate end of life care for LGBT patients.
More than a third – 34% – said they were “not confident at all”. As a result, LGBT people were more likely to delay accessing care they needed and to suffer unmanaged symptoms and pain, researchers found.
“It is right that these problems are being exposed, and this report should be a watershed”
Meanwhile, more than a quarter – 26% – said they had experienced discrimination related to their sexuality or gender identity from a health or social care professional.
Issues highlighted by the report included lack of understanding about different family structures and dynamics, and people feeling under pressure to constantly “come out” to different care professionals, which can be particularly challenging for older people who grew up when it was still illegal to be gay.
“The end of someone’s life is a time of significant vulnerability. It is therefore essential that nurses and other healthcare professionals recognise that LGBT people have different needs,” said Dee Sissons, director of nursing for Marie Curie.
“When we spoke to our own staff, some talked about treating everyone the same regardless of sexuality or gender,” she said. “Whilst it’s true that everyone should receive the best care, more training is needed to ensure that person-centred care for LGBT people is not lost when we talk about treating everyone equally.”
Marie Curie highlighted the need for more training for healthcare professionals, including its own nurses, and also said more research was needed into the experiences of LGBT people nearing the end of life, especially when it came to bisexual, trans and younger LGBT patients.
Jagtar Dhanda, head of inclusion at Macmillan Cancer Support, said the report showed health and care professionals often make assumptions about a dying person’s sexuality and gender identity.
“This is completely unacceptable and can make something as sensitive and personal, as end of life planning becomes even more difficult and distressing for people in the LGBT community,” he said.
“This report also highlights examples of when end of life care has gone well for LGBT people, but sadly these are only a minority of cases,” he added.
The Royal College of Nursing said the report should be a “watershed” in efforts to improve care.
“Despite progress made in improving care and tackling prejudice, it’s tragic that people are dying alone without the person most dear to them and unheard by the very people who should be providing them with support at the end of their lives,” said Amanda Cheesley, the RCN’s professional lead for long term conditions and end of life care.
“It is right that these problems are being exposed, and this report should be a watershed,” said Ms Cheesley.
She said it was vital that nurses and others asked the right questions and were sensitive to the individual needs of all patients and their loved ones.
“Health staff should be asking all dying people who they want involved in their end of life and recognising that next of kin are not always blood relatives,” she said.
“All of those involved in delivering care at the end of life must now work together to ensure that the distressing situations described in this report are firmly in the past,” she added.