LGBT communities and end of life care

Categories: Community Engagement.

Trinity Hospice was the first hospice to march at London Pride when we joined the parade on 28 June 2014. We are also signed up to the Diversity Champions programmes with Stonewall, again apparently the first hospice in London to do so. Is this simply because Trinity Hospice has openly gay senior managers, or is there a bigger picture to consider here?

Trinity Hospice is not alone in striving to make their expert care and support available to as many people as possible, either through providing services ourselves or by educating others. We would claim to provide truly equitable, non-discriminatory, and inclusive services to all, in an environment where individuality and diversity is openly welcomed, yet when we looked at our data we couldn’t identify more than half a dozen people from LBGT communities within our patent numbers, largely because we didn’t ask. The picture was similar for our staff. We want to do better, both for our patients and for our staff.

Like many healthcare facilities we struggle to adequately discuss and record the sexual orientation and gender of patients, sometimes making conclusions based upon outward appearance and cultural norms. We do not believe that this is in keeping with our values or our mission; to help communities improve their relationship with death and dying. 

Actual numbers of LGBT individuals are not available but Treasury Actuaries suggests that somewhere between 5% and 7% of the population are lesbian, gay or bisexual (LGB) and that around 300,000 people identify as trans* (T). These are therefore significant sized communities who may not be receiving the support and care they require as they live with a life-limiting condition.

Illness and ageing do not discriminate. One in three of the population will get a form of cancer, and with ageing comes the increased risk of having more than one life-limiting health problem, coupled with potential isolation and financial worry. It is demonstrated that LGB people have a higher incident of poor health related behaviours such as smoking, excessive alcohol intake and recreational drug use than the rest of the population. This, along with poor attendance at prevention screening programmes (eg lesbians for cervical screening) and healthcare facilities in general for fear of discrimination, or through ignorance, gives them a disproportionate cancer burden and increased challenges in older age and in managing death and dying.

Interest in end of life and LGBT communities is slowly gathering momentum. Macmillan, Stonewall and The National Council for Palliative Care have all published in the area and we await the final report of recent research led by the University of Nottingham and Marie Curie called The Last Outing, highlighting the experiences of older LGBT people at the end of life. We fully expect the research to highlight both practical and psychological / well-being issues.

All too often same sex couples have not planned for death or put their affairs in order leading to anxiety before death and real difficulties after death for the surviving partner who can find themselves homeless, without income and having no bereavement support. Access to end of life services appears to be avoided in the same way as other healthcare due to fear and past experience and this can make the last outing a very lonely journey.

During the late 80s and early 90s I believe hospices reached out to gay men dying from AIDS related illnesses in a way no other healthcare facility did. At Trinity we believe there is still a place for a special relationship between hospices and LGBT communities and individuals.

At Trinity Hospice we have made a commitment to improve our relationship with people from LGBT communities, and to improve their relationship with health but also death and dying. 

We also want to have an informed and inclusive workforce who has the knowledge and skills to ensure all patients, regardless of their protected characteristics, receive expert and high quality care.

To do that we will need our local LGBT communities and professional colleagues to help us, and we hope that by being the first hospice ever to march at London Pride we have demonstrated our commitment, and encourage LGBT people to come forward to support us and improve hospice practice.

We are launching Trinity LGBT Friends on 17 September at an event at the hospice in Clapham hosted with Stonewall. We hope this will be a spring board to improving awareness and service provision at Trinity and maybe across hospice care.

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