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Nearly three quarters of terminally ill LGBT people face discrimination

Author: Leila Hawkins
16 May 2017

Lesbian, Gay, Bisexual and Trans (LGBT) people with life-limiting conditions are experiencing discrimination in health and social care, according to a new study.

Funded by Marie Curie and led by researchers from the Cicely Saunders Institute, St Joseph’s Hospice, and various UK universities at King’s College London, the research has found that almost three quarters of LGBT patients (74 per cent) are not confident that end of life care services are sensitive to their needs.  

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.

The study involved in-depth interviews with LGBT people across the UK, including those facing terminal illness themselves, and bereaved loved ones. 

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. Others had experienced milder insensitivity, such as assumptions of heterosexuality which made it harder for patients to feel at ease.  

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 and preservation of their gender identity.

David, a gay man living with a neurological condition, said:

 “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.”

Fiona, the bereaved partner of a woman who died of cancer, said:

“Oh God, I’ve got to go through this again. I’ve got to come out again. How are people going to treat me? It’s tiring. When you’re so low and vulnerable it’s that risk versus benefit equation.”

Based on the interviews, the researchers identified ten simple recommendations for healthcare professionals to follow, including 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.

Researchers suggest these should be incorporated into core training on discrimination and diversity, and healthcare professionals should also be encouraged to reflect on their own attitudes to address sources of discrimination.

Commenting on the findings, lead researcher Dr Richard Harding of the Cicely Saunders Institute said:

“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 focussed public health strategies and training and education amongst all healthcare professionals are needed if we are to bring about widespread and consistent improvement in the care that LGBT people receive.”

Tracey Bleakley, Chief Executive of Hospice UK, said:

“It is deeply worrying that inequities in care for terminally ill LGBT people are still so widespread. Everyone receiving end of life care deserves to be treated with dignity and respect and should feel they can be fully themselves.”

“As this study highlights there is a real challenge for healthcare professionals at all levels, from ward to board, to actively tackle any attitudes or behaviours that could be barriers to diversity, whether these are overt or more subtly excluding.

“Hospices are known for their compassionate approach to care and can help lead the way in tackling these barriers and making services more inclusive.”

“Hospice UK is committed to making sure that everyone gets equal access to the best care at the end of their lives and tackling inequality is a key goal of our five year strategy.”

For more information visit Marie Curie

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