Last reviewed 31 October 2016
Jef Smith explores “Hiding Who I Am”, the recently published report from the Marie Curie organisation which tackles the reality of end-of-life care for lesbians, gays, bisexual and transgender (LGBT) people.
Bringing together society’s ambivalence about LGBT people with the age old taboos associated with death was certainly challenging, but the report pulls no punches. Nor can any of those who work in domiciliary or other forms of social care afford to duck these issues since their clients are now likely to be drawn from the whole spectrum of sexual orientations.
Establishing numbers is a highly uncertain business. Estimates of the percentage of the population who are lesbian, gay or bisexual vary from 1.6% in the 2013 Integrated Household Survey to 6% used by the Treasury. Both of these omit the figure for people identified as transgender, which is estimated by the Gender Identity Research and Education Society as 1%. Applying the higher estimates to the 11.4 million elderly people in the UK — the 2014 figure — suggests that there are around 684,000 LGB people and 114,000 transgender people who are over 65, though there may be some overlap there. A degree of precision is important to researchers and for the purpose of planning services, but for most practitioners it is sufficient to know that the numbers are large enough for such clients to feature quite frequently among the clientele of any home care agency. There is no excuse for not recognising that basic fact.
Extrapolating from national mortality statistics, it is likely that around 40,000 LGBT people die each year. That figure could be higher, as LGBT people tend to be more prone than others to life-threatening and life-limiting diseases. Smoking and alcohol abuse, for example, are thought to be high, perhaps because of the stress arising from discrimination. The annual death figures in the general population are set to rise significantly over the coming years, so high quality end-of-life care for LGBT people will be essential.
Domiciliary care will certainly need to play its part in that process. LGBT people are more likely to be single, are less likely to have children, and are at high risk of being estranged from their birth families, so they may miss out on some of the support structures available to others. Some will be reluctant to go into residential or other institutional care late in their lives, so will go on being cared for or at least trying to cope in their own homes, and domiciliary care agencies need to be prepared to offer their services when appropriate.
The research for the Marie Curie report, carried out in partnership with the University of Nottingham and King’s College London, confronted six major issues. The first of these, predictably, is discrimination. Prejudice is real and anti-LGBT feelings remain widespread. To this must be added the perception of stigma, for example, according to the organisation Stonewall, 60% of older LGBT people believe that social care services will not understand and meet their needs. This the report calls “anticipatory discrimination”, and whether or not the fear is always justified, it clearly inhibits the confidence that when the time comes professionals will not react sympathetically to end-of-life needs. A recent Care Quality Commission thematic review backed this finding.
Much of this fear is based on attitudes and legislation which are now historical, but bisexual people, for example, still encounter active discrimination, even within the LGBT community. Research, again from Stonewall, conducted in 2015, revealed that nearly a quarter of client contact staff had heard colleagues making negative remarks about lesbian, gay and bisexual people, and 10% had witnessed a colleague expressing the belief that sexual minorities can be cured of their condition. Do you recognise your fellow workers, or even yourself, in this picture?
Nottingham University research has shown that care homes are among the settings which are often perceived as not safe spaces in which LGBT people can disclose their identity. The effect is to delay access to services to some people with terminal illness. Some doubtless make claims on domiciliary care services when their needs are really more complex and urgent than can be dealt with at home.
Whether certain services should be specific to LGBT people or even run by LGBT people is controversial. Many are wary of segregation but would welcome evidence of being welcomed by services generally, for example, by the use of the rainbow symbol on publicity and the inclusion of LGBT people in the language and imagery of posters, leaflets and other publicity material. These are positive steps the industry could take right away.
End-of-life care and religion
The second issue the report identifies is the relation of religion to end-of-life care. The fact that many hospices and some other services have established religious affiliations, or at least names which sound Christian, leads some gay men, for example, to fear that they will be treated with hostility. Many, however, have spiritual loyalties and needs of their own, and services need to promote themselves in such a way that prospective clients can be assured that these will be responded to non-judgmentally.
Identity and family
This relates to a third issue — the assumptions made by practitioners about identities and family structures. It is a moot point which is worse — assuming heterosexuality or deliberately avoiding the issue; both are potentially hurtful, forcing clients into either some means of disclosing their sexuality against their inclinations or the alternative of total non-disclosure. The latter, while perhaps avoiding discrimination, conceals facts which may be critical to end-of-life care, crucially who is the person closest to them. The golden rules for professionals are to use inclusive language, to communicate an atmosphere of non-discrimination, and to give clients plentiful opportunities to self-identify. The frequently adopted and seemingly liberal stance of “treating everyone the same” in reality fails to respond appropriately to the nuances of LGBT people’s fears and needs.
LGBT people have very varied support networks, the fourth issue the report addresses. The importance of “constructed support networks” means that friends or “families of choice” are often ranked above biological families. This confronts caring professionals with complex and serious issues, perhaps having to deal with conflicts between different groups both claiming a prime relationship to a resident. Contrary to popular belief, the expression “next of kin” is not defined in law, so there is a need to pay attention to whom a client wants to be seen as closest to him or her, a tricky calculation in some home care situations. Sensitivity in this area is most urgent in relation to advance care planning, where a service user expresses preferences about his or her future care and who should deliver it.
Grief and bereavement
Fifth, there is the issue of grief and bereavement. Research has found that LGBT people can feel pressured into hiding their sorrow after the death of a loved one and thus miss out on being supported, a process for which the telling term “disenfranchised grief” has been coined. Again, honest and open discussion is the order of the day but this is not always easy to achieve. The report relates a sad story of a man whose partner was completely — and drastically — excluded from his funeral arrangements; as the couple were not out to either of their families he was powerless to influence matters.
Finally, there is the increased pressure on LGBT carers. This arises from a reluctance to use formal services for fear of discrimination, so the response from professionals, particularly those in home care who are likely to become aware of such reticence, must be to signpost support as early as possible. As with the other issues raised in the report, increasing acceptance within society generally of the diversity of relationships should gradually ease the problem, but for the current generation of LGBT people such enlightenment will often have come too late.
It is of course vital that we do not see the fact of being a member of the LGBT community as the central or only issue relating to the use of social care services. By the very fact of coming to the attention of care professionals, people generally have a range of problems with which they need help. Sometimes these problems are already multiple — physical disability, mental health issues, and learning difficulties can run side by side — so facing or fearing discrimination on grounds of sexual orientation multiplies potential service users’ discomfort in accessing services or even undermines their capacity to seek help at all. Care workers must see their clients’ needs separately without ever losing sight of the totality of the person.
It really all comes back to issue number one in the Marie Curie report — prejudice or the perception of prejudice. Thinking about one’s end of life and the care one hopes to receive when the time comes carries difficulties at the best of times; if you start from a standpoint that you cannot be sure that you can trust the practitioners to whom you are going to have to depend, problems multiply exponentially
Eliminating the stigma or perceived stigma of belonging to a sexual orientation minority — or indeed any other minority — is the first step. If, however, the social care workforce, which of course like any other group in the community contains its proportion of LGBT people, is to provide genuinely person-centred care, it needs to go much further. Marie Curie serves praise for setting the agenda for action.