Terminally ill LGBT people are facing discrimination in health and social care, according to a major new study.
The charity organization Marie Curie, which provides care and support to people with terminal illnesses, funded the report following a string of concerns raised by patients.
The study involved in-depth interviews with LGBT people across the UK, including those facing terminal illness themselves and bereaved loved ones.
A staggering 74 percent% of terminally ill LGBT patients said they did not feel confident that healthcare services would be sensitive to their needs.
As a result, they often delay accessing care and are more likely to experience unmanaged symptoms and pain at the end of their lives.
Terminally ill LGBT people’s experiences
The report noted that knowledge and attitudes of healthcare professionals play a central role in terms of LGBT people’s access to, and experiences of, services.
Some of the interviewees had encountered overt discrimination when meeting with healthcare professionals, like the refusal to acknowledge a relationship with a same-sex partner.
“There was a complete lack of recognition. The consultant even, on the tenth or twentieth time of being told I was his partner, still referred to me as his brother,” said James, partner of a gay man living with a neurological condition.
Other interviewees had also experienced milder insensitivity, such as assumptions of heterosexuality that made it harder for patients to feel at ease.
“I got in touch with an advocacy helpline, and the receptionist at the end of the phone was nonplussed when I said that I was gay. She assumed I was calling about my wife,” said Jonathan, who had lost his partner to bowel cancer in 2015.
“I was trying to find any possible way of getting help and support but her reaction– well, it put me off in a way. It did make me want to just not pursue that particular avenue,” he added.
Likewise, experiences of homophobia had an impact on individuals’ willingness to reveal their sexuality to healthcare professionals or to show intimacy with their partner in care settings.
Trans interviewees reported instances when decisions on their treatment required them to choose between their health or their preservation of their gender identity.
Terminally ill LGBT people’s concerns
“Despite legislative changes and policy initiatives to improve healthcare for LGBT people in the UK, discrimination within health and social care services unfortunately remains common,” said Dr. Richard Harding, lead researcher at the Cicely Saunders Institute at King’s College London.
“People living with terminal illnesses are already often at their most vulnerable, so we have a duty to address the attitudes and behaviors among healthcare professionals that contribute to negative experiences of care,” Dr. Harding said.
The researchers have identified ten simple recommendations for healthcare professionals to follow, which they say could markedly improve experiences of care and reduce inequities.
Their recommendations include ending heterosexually-framed questions and assumptions, respecting individuals’ preferences for disclosing sexual identity or gender history, and explicitly including partners in discussion.
Terminally ill LGBT people: Improvements
It is estimated that more than 40,000 LGBT people die each year in the UK.
Furthermore, a significant number miss out on the care and support that they need, despite experiencing higher rates of life-threatening diseases than the national average.
Marie Curie is now calling for healthcare professionals to implement the recommended changes based on the study to avoid continuing the discrimination against terminally ill LGBT people.