February 21, 2014, by Fraser

The Last Outing – improving end of life care for LGBT people

Dr Anne Patterson, Research Fellow in the Sue Ryder Care Centre for the Study of Supportive, Palliative and End of Life Care, gives an update on The Last Outing — a project to improve end of life care for LGBT people:

We reported this time last year on a project which was just getting underway in the Sue Ryder Care Centre, School of Health Sciences here at the University.  The project is gathering the experiences and concerns of Lesbian, Gay, Bisexual and Trans (LGBT) people over 60 regarding end of life care.  The project has been funded under a call for research to explore ‘variations in end of life care’ (Marie Curie Cancer Care Research Programme). While ‘end of life care’ is generally understood to be about care delivered to people in the last year of life, it does also encompass later life experiences and thinking about mortality – issues that may become more relevant as people age. Additionally, people over 60 are more likely to have known and loved people who have died which may also lead to thinking about their own mortality.

We’ve had a good response so far from LGBT people aged 60 and over who have told us they believe this is important research. We recognise that many will not even view 60 and over as particularly ‘old’ and we do ask a question in the survey about how people view old age; at what age might they view someone as ‘being old’? Answers to that question in the survey vary greatly but it seems that ‘old’ is almost always older than the person answering!

Ultimately this information will be used to inform and improve policy surrounding end of life care for these groups in the future.  The research team have undertaken a UK-wide survey (230 responses to date) and have conducted almost 40 interviews of the intended target of 60.  They have travelled to Northern Ireland, Scotland and Wales to ensure that responses are truly UK-wide.

Diversity of experiences

Early analysis suggests that there is a great diversity of experiences; some LGBT people have received excellent care whilst some have faced prejudice and ignorance.  24% of those responding to the survey reported that they had experienced discrimination from health and social care professionals related to their sexual orientation and/or gender identity. Potential discrimination does not appear to be limited to the professionals caring for LGBT people.  One participant reported having received “Excellent support from the district nurse, GP and hospice.  Though some problems from other patients at the hospice”.  Thus, it would seem that attitudes and behaviours of other service users may require attention and possible ’management’.

Another participant stated however that “I am not too bothered about staff making assumptions – we all do it.  As long as they react in a positive manner after being informed of our relationship, then I am happy”. There is also evidence that suggests that cultural and religious prejudices are carried into care situations and impact on individual practice.  A participant told us that “One nurse didn’t want to help my partner as she, the nurse, was Catholic”.  Alternatively another person responding to the survey stated that “I’ve no idea whether staff knew or didn’t know; in the hospice they were just very tender and caring.  The issue didn’t formally arise.  I imagine they must have guessed.  It wasn’t an issue”.

Hiding and unhiding

The in-depth interviews conducted so far have uncovered some interesting variances in people’s social networks, with some people having very extended networks and others have very few people around them.  Quite often too, people have reported having ‘families’ made up of other LGBT friends rather than biological families.  Another area of great variance has been that of individual histories which have been lived over a period of great social change. Some people have kept their sexual orientation to themselves their whole life, and intend to carrying on doing so – others have been ‘out and proud’ from relatively early stages of their lives.  This is a generation who have experienced great variability in acceptance and/or hostility in employment and social environments and this is echoed in the stories being related to us. They are a generation who has learned to hide and unhide facets of their being.

When accessing health and/or social care services, some people have received sensitive care, particularly in the bereavement of partners, whilst at the other end of the spectrum, some have been excluded from decisions to do with the care of their partner or LGBT friend. Findings from the project will be discussed in June through a Public Engagement Workshop here at the University.

Join The Last Outing

The research team are still keen to receive responses to the survey.  This can be found online at www.nottingham.ac.uk/nmpresearch/lastouting or people can telephone 0115 823 0485 or email thelastouting@nottingham.ac.uk to receive a hard copy of the survey.  The research team are also reporting upon early findings at several LGBT History month events.  Further details of these can be found on The Last Outing website.

Posted in Research news