LGBT research at end-of-life: You matter because you are you

“You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die”

Dame Cicely Saunders

Dame Cicely Saunders was a deeply religious woman, nurse, social worker and physician. She’s often credited with the creation of the modern hospice movement. Every individual mattered to Dame Cicely Saunders. No matter who the individual was. No matter what they did or did not achieve in their life. Also, to Dame Cicely Saunders, everyone deserved good care. But sadly, Dame Cicely Saunders died 10 years ago. She was able to leave a legacy of the modern hospice movement. But she died before being assured that everyone would receive good care at the end of their life. Unfortunately, this is still the case for those within the LGBT community.

Around the world, some within the LGBT community are not even able to have loved ones close to them at the end of their life. For example, in 2010 President Obama needed to mandate that same-sex partners must be allowed visitation privileges in any hospital that receives federal funding, such as Medicare or Medicaid.

Research also shows that many LGBT people are reluctant to disclose their sexual or gender orientation when they are receiving treatment for life-limiting diseases such as cancer. This can make it especially difficult for an LGBT patient’s partner and family to be involved in supporting them during their treatment.

These types of situations make a new study – led by the Cicely Saunders Institute at King’s College London, the world’s first purpose built institute of palliative care – so very important.

The study is called ACCESSCare: Advanced Cancer Care Equality Strategy for Sexual minorities. ACCESSCare aims to deliver better end-of-life care experiences for the LGBT community in the UK. In doing so, this research acknowledges the value of every individual and every family within the LGBT community at every stage of life.

This important LGBT research project now needs people from the UK to take part. You are able to be involved in ACCESSCare if you identify as lesbian, gay, bisexual and or transgender (LGB and/or T) and are in the later stages of a life-limiting illness (such as cancer, HIV, MS, motor neurone disease, heart disease or chronic obstructive pulmonary disease), or if you have cared for or are currently caring for someone with a life-limiting illness.

Not everyone who cares for someone with a life-limiting illness sees themselves as a carer as, for example, they often view the things that they do as part of their everyday role. Going to appointments, discussing treatment plans, helping with shopping, just being around to make sure that their loved one is OK is all part of caring for someone. If you do this then you may be able to take part in this research.

Dr Richard Harding, ACCESSCare’s lead researcher, highlights the importance of this project: “There is strong evidence that LGBT communities are more likely to experience some cancers and there is also good evidence that being a member of a minority group and the stress associated with that can lead to poorer health behaviors.” Dr Harding explains that the study is aiming to understand the experiences and precise needs of the LGBT community within the UK. “Then we want to translate that into direct education for those providing end-of-life and palliative care for people within the UK,” says Dr Harding.

Watch the video above to see an interview with Dr Harding about the ACCESSCare project.

Dr Barbara Daveson, a lecturer at King’s College London and one of the researchers involved in ACCESSCare, says: “Having a good quality of life and having a good death are basic human rights. But sadly, both of these rights are often denied to individuals and families within the LGBT community. This means that those in the LGBT community can struggle at a time when they desperately need compassionate and effective care from any and all involved in providing that care. This study presents an opportunity to deliver equity to LGBT families and individuals. Discrimination or poor care is the last thing that LGBT families need at the end of life. Therefore, this LGBT research is an opportunity to redress some of the inequity that LGBT families and individuals have experienced throughout their entire life.”

If you want to make a difference to healthcare and the lives of those within the LGBT community, if you are living with a life-limiting illness or you care for someone who has a life-limiting illness, you may want to get involved. ACCESSCare is looking for new participants until September 2015. As it is led by one of the leading palliative care institutes in the world, the Cicely Saunders Institute at King’s College London, this research is set to make a difference to the policies, training and education that directly influence the care that is received by members of the LGBT community and their loved ones.

This research is funded through the Marie Curie Cancer Care Research Programme. Contact the Cicely Saunders Institute to become involved in ACCESSCare’s research.

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