New research led by the Cicely Saunders Institute at King’s has found that healthcare professionals must make changes to their practice to improve the care experiences of lesbian, gay, bisexual and trans (LGBT) people with terminal illnesses.
The study, which has been funded by Marie Curie, follows a report by the terminal illness charity which showed that terminally ill LGBT people in the UK experience discrimination and exclusion in health and social care, with nearly three-quarters (74%) not confident that services would be sensitive to their needs. It found that, as a result, LGBT people often delay accessing care and are more likely to experience unmanaged symptoms and pain at the end of their lives.
Every single time I see someone who is going to be delivering a service to me, I wonder whether I should pretend in case it affects the service I get.
David, 62, gay man living with neurological condition
The new research, which involved in-depth interviews with LGBT people across the UK – including those facing terminal illness themselves and current or bereaved loved ones – found that the knowledge and attitudes of healthcare professionals played a central role in terms of LGBT peoples’ access to, and experiences of, services.
The study identifies several broad themes regarding the experiences of LGBT individuals facing terminal illness related to their interactions with healthcare professionals. It explains that LGBT people often require additional or different consideration related to their sexual identity or gender history but which often goes unrecognised by healthcare professionals.
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.
James, 35, partner of gay man living with a neurological condition
Based on the interviews, the researchers have identified ten simple recommendations for healthcare professionals to follow, which they say could markedly improve experiences of care and reduce inequities.
However, the researchers also say that these recommendations should be incorporated into core training on discrimination and diversity. They explain that as well as receiving training on the needs and preferences of LGBT people, healthcare professionals should be encouraged to reflect on their own attitudes and behaviours in order to promote cultural sensitivity and address sources of discrimination.
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. People living with terminal illnesses are already often at their most vulnerable, so we have a duty to address the attitudes and behaviours among healthcare professionals that contribute to negative experiences of care.
What this research accomplishes, is to provide individuals, services and institutions with simple, low cost recommendations that can contribute towards improving care experiences. However, we also conclude that focused public health strategies and training and education among all healthcare professionals are needed if we are to bring about widespread and consistent improvement in the care that LGBT people receive.
Lead researcher, Dr Richard Harding, Cicely Saunders Institute
Recommendations for healthcare professionals include avoiding heterosexually-framed questions and assumptions, respecting individuals’ preferences for disclosing sexual identity or gender history, explicitly including partners in discussions and displaying signs of LGBT inclusiveness in buildings and service materials.
While some of those interviewed by the study researcher, Dr Katherine Bristowe, encountered overt discrimination when meeting with healthcare professionals – for example the refusal to acknowledge a relationship with a same-sex partner – others describe more subtle insensitivity, such as assumptions of heterosexuality, which served to create distance between patients and healthcare professionals. Correspondingly, where participants described positive interactions with healthcare professionals, these served to markedly improve experiences of care.
The researchers also explain that previous experiences of homophobia, impacted on individuals’ willingness to reveal their sexuality to healthcare professionals or to show intimacy with their partner in care settings. Trans interviewees reported specific considerations, for example, related to how treatment decisions might require them to choose between their health and preservation of their gender identity.
It is estimated that more than 40,000 LGBT people die each year in the UK. However, it is suggested that 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.