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School of Health Sciences
Exploring end of life experiences
and care needs in the lives of
older LGBT people
Kathryn Almack, Senior Research Fellow
Research Fellows: Anne Patterson, Meiko Makita
Sue Ryder Care Centre for the Study of Supportive,
Palliative and End of Life Care
Co-Investigators: Jane Seymour, Andrew Yip (University of
Nottingham); Anita Sargeant (University of Bradford)
Mixed-methods study:
– 237 completed surveys
– 60 in-depth interviews
– L,G,B and/or T people aged 60 and over
or under 60 but in a partnership with an
L,G,B and/or T person aged 60 and
older.
Image taken from NCPC “Open to all – meeting the
needs of LGBT people nearing the end of life"
Exploring end of life experiences and care
needs in the lives of older LGBT people
Mixed methods study: survey (N=237) followed by in-depth
interviews with a sub-sample (N= 60) of the survey respondents
Age range 37 – 93 years
Sexual Orientation
%
Heterosexual/straight
3
Gender
%
Gay
43
Female
49.8
Bisexual
10
Male
46.8
Lesbian
37
Other (e.g. ‘queer’, ‘dyke’, ‘asexual’
and ‘not the marrying kind’)
7
Alternate identity
(e.g. ‘pangender’,
‘transgender’,
‘trans man’, ‘dual
gender life’)
3.4
Gender Identity
17% of respondents have a different gender
to that assigned at birth
Some key dates
1967: Sexual Offences Act decriminalised homosexual acts between
men aged 21 and over (England & Wales). Similar legislation passed
in Scotland, 1980 and NI, 1982
1971: First Gay March in London
1973: Homosexuality removed from list of
psychiatric disorders in the American
Association's Diagnostic Statistical Manual
WHO listed homosexuality as a mental illness until 1990 and
transsexualism is still classified as a mental disorder under the
International Classification of Diseases (ICD)
1988: Section 28 (Local Government Act). Prohibited intentional
promotion of homosexuality or teaching of the acceptability of
homosexuality as a pretended family relationship. Repealed in
England in 2003
1997: Age of consent for homosexual acts brought in line with
heterosexual age of consent (16)
2000 onwards: legislation giving LGBT people greater rights
What is old?
• One survey question we asked…
In your view, at what age would you classify someone as an old
person?
• Many ifs, buts, and maybes…
–
–
–
–
–
Other people are old
Old is always older than you are
Reported to be a ‘state of mind’
Linked to retirement
Dependent on current health
“Ageing is a state of mind not how old you are it’s how many
years of experience you've got. At times I feel like a 49 year old
with 84 years of experience”
Comments from survey
• You're old if you're a lesbian if you're in your
40s because the lesbian and gay community is
very much geared to young people
• I'm sufficiently confident at the moment to
say (my sexuality) has got nothing to do with
anybody else, I wouldn't hide it. Whether
frailty might alter that, I don't know, who can
say?
How services should be organised?
• 60% of respondents said YES they would like to be able to
access health and social care services SPECIFICALLY for LGBT
people
• 63% said YES they would like to be able to access health and
social care RUN BY LGBT people
• In both of the above, the ‘remainder’
included around 25% ‘uncertain’ responses
THOUGH….
• The interviews appeared to suggest greater ambivalence and
uncertainty than the above figures would suggest
• People often changed their opinion within the same interview
Key choices noted are
for services to:
• Develop greater inclusivity for all
people
• Reflect the broad diversity within our
society
• Instil confidence that LGBT people
could feel validated, understood and
safe
• To be places where one could find
'like-minded' people
What I can't imagine is being in a position where carers could
come into my house and be homophobic or not accept who I am
or I'd have to pretend. Like years and years ago my partner and I
bought a house together, we used to pretend we had separate
bedrooms and things. And I couldn't imagine going back into that
sort of way of living and hiding who I am. My worst nightmare
would be being in an old people's home. I bet it's everyone's
worst nightmare but (…) The thought of going back into the
closet really, into a heterosexual environment would be awful at
the end of your life. If your past has been quite difficult and
you've struggled, it's hard to think about the future (with those
sort of worries) (lesbian, 65).
• My priority is there should be a decent service for everybody
and that is a service that respects diversity as part of the day
job ... and there might even be dangers about setting up
specific services, because you're just then ghettoised over here
rather than being part of the bigger picture.
• It is a great fear of lesbians that you'll end your life in a mixed
sex nursing home where you'll find the company heterosexist
and feel alienated and angry.
• One thing I'm keen to explore for myself is specific retirement
facilities or care homes specifically for the LGBT community.
• LGBT specific homes might be a target for abuse, you know, if
it got known about by youths on the area or … you might end
up more vulnerable
Choices at end of life relating to sexual
orientation or gender identity / 1
• I want my funeral to reflect my identity and my activism
• I want to be accepted as a lesbian even in old age and not be
in any care situation where it is ignored
• The need to be treated with respect as a gay man and I'd like
male carers
• I want my sexual orientation to be fully accepted not just
tolerated
• As a trans person I'd like carers who accept my anatomical
differences as a trans person
• I want to be clear about my partner being considered and my
friends having a voice
Choices at end of life relating to sexual
orientation or gender identity / 2
• I don't want anyone putting me in a dress or cutting my hair
or putting make-up on me
• I would like the company of other LGBT people, preferably
women only (gay or straight) environments
• I want my partner to have a say about what happens to me, it
is important to me that she is not dismissed or pushed out by
my biological family
• I wish to end my life including my funeral as a woman
• I want to be buried as a woman but I have a feeling my
daughter would like to bury a father who is designated male
Networks
• Social networks ranged from very
• extended networks to relatively small
o not necessarily about numbers though
o people reported having ‘families’ of
LGBT friends – less reliance on
biological families.
• Varied range of ‘rich’ histories - 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 early on in
their lives
Stigma
• Understanding respondents' accounts:
negotiating both the anticipation and/or the
reality of stigmatising encounters in everyday
social interactions.
• Respondents acknowledge the existence of
negative social attitudes and potential for stigma
• Responses to the imputed stigmatisation and
associated 'shame' vary:
– Some internalisation
– ‘Tolerating’ existence of stigma
but not internalising it
– Resistance & challenges
I’m fortunate to be very well-off; I have no concerns on that front, I
can afford the best care. But in terms of planning ahead … who can I
appoint? I think it correlates a lot with being gay and not having had
a kind of traditional family life. I worry if someone is in a position to
make decisions on my behalf, they need to accept who I am. I will
start talking to my niece more, and her daughter too, I forget her
name but she’s a nice girl … (gay man, 71).
Society, values, family and lack of information when growing up
meant I kept my ‘real’ self hidden. I feel I have led a false life.
Lonely, secretive, isolated. Not wanting to open up to others I
haven’t formed close friendships. Despite now attending the Gender
Identity Clinic I fear I will die male rather than female. I don’t want
to lose my children and die lonely as a female. If I was 20 now I’d
break out and live as female before getting trapped in a career and
relationships in a male role (trans survey respondent).
I'm my mother's principal carer now. One of the things she
has been anxious about is whether she would be outed in her
nursing home as the mother of a gay man, that someone
would realise John and I were partners and that would reflect
badly on her. So that has been difficult. So although I've
never hidden our relationship, I've never been explicit either.
I've kept away from my family because of their hostility to
me, and they never accepted my partner. Now I find myself
caring for my mother who is 90 and it has thrown up a lot of
emotions to deal with… On the plus side, I've started
corresponding with family on her behalf some of whom I've
not had contact with since childhood. They've all been very
accepting of us, much more so than my parents (gay man,
69)
People of my sort of age who have particularly in earlier years
experienced prejudicial discrimination, have maybe been
through a period of their lives when they felt quite isolated
and alone. So I can understand that some people may have a
feeling that gay specific services and residential
accommodation or whatever, caring, gives them a sense of
safety and certainty because they can’t predict and rely on a
totally integrated service necessarily giving them the feeling
of safety and certainty that they would want (lesbian, 70).
If you are terminally ill and if people making decision about
your treatment options and you're not necessarily confident
that they value your lifestyle as much as if you were married
with three kids then you know … I can understand that ...
(bisexual woman, 67).
And you’ve got to be able to be yourself, I mean I have heard of gay
guys on their own going into care homes who have to put
themselves back in the closet so to speak because it’s too risky of
prejudice and antagonism to feel that they can be themselves,
because they feel they won’t be understood. And I understand that
is a real fear even though it’s sad that it would be that way …
I’m sure people who are hesitant about being out have a whole
portfolio of these little situations that they know how to, or develop
strategies for covering up, trying to cover up, and that’s really sad at
the end of life when you can’t be yourself.
but I’m an optimist, I want to see a society where we don’t separate
out people because of sexual orientation. That’s why I feel it’s so
important to do stuff that I do … I want to see that within my life
we’ve gone from one of secretive gay society
to one where it’s actually completely normal
and properly included in all things like health
services and every other service (bisexual man, 64).
And you’ve got to be able to be yourself, I mean I have heard of
people on their own going into care homes who have to put
themselves back in the closet so to speak because it’s too risky of
prejudice and antagonism to feel that they can be themselves,
because they feel they won’t be understood. And I understand that
is a real fear even though it’s sad that it would be that way …
I’m sure people who are hesitant about being out have a whole
portfolio of these little situations that they know how to, or develop
strategies for covering up, trying to cover up, and that’s really sad at
the end of life when you can’t be yourself.
but I’m an optimist, I want to see a society where we don’t separate
out people because of sexual orientation. That’s why I feel it’s so
important to do stuff that I do … I want to see that within my life
we’ve gone from one of secretive gay society
to one where it’s actually completely normal
and properly included in all things like health
services and every other service (bisexual man, 64).
Stigma revisited
• Considering the impact of living with
the legacy of stigma
• Drawing upon a range of strategies
to respond to and/or resist stigma
• Thinking about resources available to
counter stigma: economic, cultural,
social
• Positive outcomes are possible
Some points to end on …
• Older LGBT people
might be invisible in a
range of care settings
• Recognising support
networks which may
be unorthodox
• Need to recognise and
work with both the
commonalities and
differences of LGBT
experiences