“I have no wish to be at the tender mercies of a homophobic carer/service”: Exploring end of life experiences and care needs in the lives of older lesbian, gay, bisexual or trans  (LGBT) people.


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Anne Patterson1, Meiko Makita1, Kathryn Almack1
1University of Nottingham, Nottingham, UK

Background

This paper reports interim findings of a UK-wide study funded by Marie Curie Cancer Care Research Programme. While end of life care (EOLC) needs are most common among older age groups , little research explores particular sub-groups and the heterogeneous needs of ‘older people', particularly those living in non-traditional family forms. One survey[i], for example including 800 cancer patients who identified as ‘non-heterosexual', highlighted specific concerns about respect and dignity.

Method

Data is being captured firstly by survey of LGBT people aged 60-plus or those supporting an LGBT partner or friend who is 60-plus and secondly via in-depth interviews with a sub-sample of survey respondents. The survey covers a range of EOLC conditions, such that findings will be relevant to cancer patients.

Results

Survey findings to date indicate that some LGBT people have faced discrimination in health and social care settings on the basis of their sexual orientation or gender identity and that some have experienced lack of sensitivity particularly in ‘end of life' situations. Three-quarters of LGBT people report that they are not confident that mainstream health and social care services provide sensitive and appropriate end of life care services and 60% would prefer to access health and social care from an LGBT-specific provider.

Conclusion

Findings suggest that diverse needs are potentially not being met for this group and current 'one-size-fits-all' strategies appear inadequate. Reports of positive experiences, however, suggest that ‘mainstream' settings can develop practice to meet potentially diverse needs and address concerns about dignity and respect. The issues revealed can inform future service development, enabling end of life care that is sensitive to an individual's culture and social interests and which also has wider relevance in a context where various non-traditional family forms exist.