Journal of Social Work in End-of-Life & Palliative Care, 10:1–26, 2014
Copyright © Taylor & Francis Group,LLC
ISSN: 1552-4256 print/1552-4264 online
Received 4 March 2013; accepted 27 July 2013.
The studies reported in this article have received IRB approval from The University of
Michigan Ann Arbor, University of Texas Health Science Center at San Antonio, and The
Virginia Commonwealth University.
Address correspondence to Tarynn M. Witten, PhD, LCSW, FGSA, Center for the Study of
Biological Complexity, Virginia Commonwealth University, Suite 111, PO Box 842030, 1000
West Cary Street, Richmond, VA 23284-2030, USA. E-mail: email@example.com
End of Life, Chronic Illness, and
TARYNN M. WITTEN, PHD, LCSW, FGSA
Center for the Study of Biological Complexity, Virginia Commonwealth University,
Richmond, Virginia, USA
In this study, the experiences and needs of a sample of 1,963
current, global, English-speaking, transgender-identified adults
responding to the Transgender MetLife Survey (TMLS) as related to
a number of later-life and end-of-life (EOL) preparations and con-
cerns were examined. EOL concerns are integrated with concerns
and challenges around chronic illness and disability. Overall, this
population was significantly ill-prepared for the major legalities
and events that occur in the later to EOL time periods. The popu-
lation was found to harbor significant fears around the future.
Drawing on the author’s decades of survey research in transgen-
der aging and case data along with current scientific and online
literature, illustrative quotations and case examples are provided.
KEYWORDS aging, chronic illness, disability, eldercare, end-of-
life care, gender identity, gerontology, geriatrics, GLBT, hospice,
older adult, palliative care, religiosity, spirituality, social work
INTRODUCTION AND BACKGROUND
Morhaim and Pollack (2013) point out that end-of-life (EOL) care issues have
become a personal, economic, public policy, and public health crisis. They
argued that the combination of the “demographic shift to older adults which
2 T. M. Witten
is associated with chronic illness and multiple comorbidities” (p. e8) and the
“enormous health care costs consumed in end-of-life care” (p. e8) places
EOL issues at a high level of importance.
Understanding aging-related chronic illness and its EOL impact pre-
supposes the existence of an aging population and assumes that the given
population has some endemic degree of chronic illness that may or may
not affect EOL perceptions and decisions. However, if such a population
were invisible to investigators, that population would have no public voice
when it comes to expressing its needs around EOL challenges; whether the
challenges are related to chronic illness (CI) or not. The global transgender-
identified population is such a community.
This lack of voice stems from a complex interaction and reaction of the
trans-identified population to all levels of the health care system. Historically,
the global, transgender-identified population has routinely faced extreme
discrimination on the part of health care workers in all areas of health care
delivery (Grant et al., 2011; Kidd & Witten, 2008a, 2008b; Persson, 2009;
Sullivan, 2003; Witten, 2008, 2009; Witten & Whittle, 2004). As a result of this
historical dynamic, abuse and violence has become part of a cultural knowl-
edge base of members of this long-term marginalized population (Witten &
Eyler, 2012). Many of the current elders of the trans-population grew up,
so-to-speak, in this toxic biomedical and psycho-socio-economic (Kidd &
Witten, 2008b; Redman, 2011) environment. As such, they are fearful and/or
unwilling to interact with health care providers.
Many authors have documented the substantive negative experiences
undergone by members of the trans-population. A comprehensive literature
review on trans-violence through 2008 may be found in Kidd and Witten
(2008a). Issues such as physical violence and abuse (both perceived and
actual; Grant etal., 2011; Nuttbrock etal., 2010), biomedical and psycho-
social abuse (Belongia & Witten, 2006; Redman, 2011; Willging, Salvador, &
Kano, 2006a, 2006b; Witten, 2008) have all been well-documented by many
researchers and community organizations.
Given what is now known about how early life factors can affect
later-life psychosocial and biomedical health (Witten, 2004a, 2008), it is
natural to ask how life-course events can modulate a trans-identified indi-
vidual’s later-life needs, challenges, frailties, resilience, and preparations.
Currently, there is limited research on how transgender-identified older
adults are aging. Fredriksen-Goldsen, Kim, and Goldsen (2011), in one of
the first national surveys of LGBT older adults, reported that transgender
older adults have higher levels of depression (48%), than LGB (30%) and
heterosexual (5%) older adults as well as lower levels of self-acceptance.
Social stigma often leads to social isolation, as more than half of trans-
gender adults age 55 and older reported losing close friends due to their
gender identity (Grant et al., 2011). Furthermore, 44% of transgender
older adults live alone (Fredriksen-Goldsen etal., 2011) compared to only
EOL, Chronic Illness, and Trans-Identities 3
18% of the general population (MetLife Mature Market Institute, 2010);
with approximately 40% of those age 55 and older reporting their gender
identity as the reason their children have no contact with them (Grant
Intersectionality is also an important component of the transgender-
identified life-course. As documented by recent studies, persons who
identify as “gender variant” (Lombardi, 2009) are frequently subjected to
discrimination (Sánchez & Vilain, 2009), sexual violence and elder abuse
(Cook-Daniels, 1995; Cook-Daniels & Munson, 2008), and hate crimes that
can be classified as a form of genocide (Kidd & Witten, 2008a). If in addi-
tion to identifying as transgender or transsexual, one is also gay, lesbian,
or bisexual, the risk of being the object of hate crimes may increase. To
further complicate the dynamics, some participants in the Transgender
MetLife Survey (TMLS) commented that being old added to their risk, for
now they had to deal with ageism as well as prejudice, discrimination, and
worse. For example, they worried that physical aging made them less able
to withstand physical attack, changes in driving ability put them at risk
of being stopped by police when cross-dressed, and prejudiced caregiv-
ers in nursing homes might mistreat them. Other respondents expressed
concern over being able to “take of loved ones” if both were in a care
facility. Yet others talked about being alone, dementia, abject poverty, and
being “a bag lady on the streets unable to get my testosterone.” These
fears and concerns are not unrealistic and have been confirmed as genuine
threats by a number of researchers (Kidd & Witten, 2008a; Persson, 2009).
For example, through multiple surveys of transgender adults age 50 and
older, one-third were found to have experienced discrimination in health
care (Witten & Eyler, 1999; Clements-Nolle, Marx, Guzman, & Katz, 2001).
In summary, transgender individuals have been stigmatized, ostracized,
and victimized within mainstream Western society (Kidd & Witten, 2008b;
Coupling the endemic violence and abuse experienced by the trans-
identified population with the growing number of elders in the global trans-
identified population (Fredriksen-Goldsen etal., 2013; Witten, 2003, 2013),
it is not surprising that little is known about the community and its needs.
In particular, the late-life and EOL needs of this population are now only
marginally understood. Further, there is only anecdotal evidence available to
support an understanding of the perceptions and actions of the transgender-
identified population when it comes to later-life and EOL preparation. Given
the arguments of Morhaim and Pollack (2013), it seems important that the
needs of all minorities are studied and this has been lacking in the geronto-
logical literature (Kwak & Haley, 2005). This article gives public voice to such
a population through the Trans MetLife Survey on Later-Life Preparedness and
Perceptions in Transgender-Identified Individuals. This survey focused on
collecting information on this not well-understood population with respect
4 T. M. Witten
to later-life and EOL needs, preparations, and perceptions of later and EOL
needs, challenges, and fears. In order to provide a context, we briefly discuss
the linguistic topology of trans-identities.
TRANS-METLIFE SURVEY DETAILS
Description of Survey
SAMPLING METHODS AND PARTICIPANTS
This study analyzed data collected from the Trans MetLife Survey on Later-Life
Preparedness and Perceptions in Transgender-Identified Individuals (TMLS).
The TMLS survey instrument was derived, by permission from MetLife, from
the MetLife v2.0 LGBT aging survey and was subsequently re-articulated,
by the author, into a “trans-focused” version. The survey was posted on
the Virginia Commonwealth University (VCU) secure survey system using
Inquisite Software (v9.0, Allegiance Inc., South Jordan, UT, USA). A snow-
ball distribution of a Call for Participants was distributed, via Internet, to
an author-maintained list of potential participants, organizations, and trans-
related e-lists. Potential respondents were directed to the survey instrument
via a hyperlink contained within the Call for Participants. In order to be as
globally inclusive as possible, and based upon previous survey work by
the author (Witten, 2003, 2008, 2011), the call for survey participants was
worded so as to include those individuals who identified as one of the fol-
lowing identities: Transsexual, Transgender, Intersex, DSD (disorders of sex-
ual development), Cross-Dresser, Gender Variant, Gender Queer-Identified,
First Nations, Non-Western gender identities. Respondents were required to
be 18 years of age or older. There were no other participant requirements.
The survey was IRB approved by VCU (IRB# B12851). All qualitative answers
were subsequently anonymized to protect the identity of the respective
The survey instrument was an 83-question, mixed methods, qualitative/
quantitative survey. The online survey instrument was composed of six sec-
tions; the first asking about background demographics. This was followed by
a section on sex, gender, and sexuality identification, and a section on the
participant’s financial situation. The remaining sections were about plans for
the future. These sections included a section on caretaking and caregiving,
a section on hopes and concerns for the future as well as wisdom gained, a
section on EOL planning, and a final section allowing the respondent to pro-
vide any comments desired. The survey took approximately 30–50 minutes
to complete, and individuals were able to return to the survey at a later time.
EOL, Chronic Illness, and Trans-Identities 5
Each question provided numerous choices so as to best reflect the experi-
ence of the respondent. However, it is acknowledged that all constructs
have limitations and therefore the majority of questions provided response
options of “other,” “not sure,” or “refuse to answer” options. In addition, most
questions included a qualitative response component, thereby allowing the
respondent to answer the question in their own words. Respondents were
told they had the right to not answer any question with which they did not
feel comfortable, and that they would not be penalized for leaving questions
blank or exiting the survey at any time. A downloadable copy of the survey
instrument is available at (http://www.people.vcu.edu/~tmwitten) under the
GLBTIQ Archive section.
STATISTICAL METHODS AND SOFTWARE
PASW 18-20 (SPSS Inc., Chicago, IL, USA) statistical software was used for
statistical analyses. Significance was accepted at the p < .05 level. All chi-
square (χ2) multiple comparisons employed the post hoc Bonferroni test.
Traditional quantitative analyses were performed on the data. Analysis of a
subset of the TMLS qualitative data is discussed in McFadden, Frankowski,
Flick, and Witten (2013). The method of interpretive phenomenological
analysis was used in order to identify the themes conveyed in the narrative
responses (Quinn & Clare, 2008; Smith etal., 1999; Thomas & Pollio, 2002).
Responses were coded, grouped, and checked using QSR NVivo-9 software
(QSR International Inc., Burlington, MA, USA) for qualitative analysis.
Basic Response Demographics
Respondents from a total of 24 countries replied to the survey. Most of the
countries had between one and five respondents. Respondents to the TMLS
resided principally in the United States (81%), Canada (9%), Australia (1%),
Sweden (1%), United Kingdom (1%), and all other respondent countries
combined (7%). Seventy percent of the respondents described their living
environment as urban, 29% suburbs/rural, and 1% other. The respondents
were principally Caucasian (85%), Hispanic (3%), Multiracial (3%), Black
(2%), Asian (2%), First Nations (1%), and all other remaining categories com-
The age distribution is described in Table 1. Across the age brackets,
there were statistically significant differences in gender self-perception.
Gender, sex, and sexuality were each assessed by a series of questions;
both qualitative and quantitative. Results are reported in Table 1. When
we examine the interplay of gender self-perception and sexual orientation,
6 T. M. Witten
TABLE 1 Basic Demographics for the Transgender MetLife Survey (TMLS) Survey
TMLS respondent ages
Over 70 4%
Natal sex (2 respondents
identified as intersex)
Race Caucasian, Non-Hispanic, European 85%
Asian/Pacific Islander 2%
All other racial identifications less
Education (highest) High school or less 8%
Some college, associate degree,
Some graduate school, graduate
Specialty school 2%
Full time 45%
Part time or Full time/Part time 10%
Unemployed with unemployment
Unemployed without unemployment
Less than $15,000 15%
$150,000 and over 8%
Where do you live? Large city (100,000 people or over) 51%
Small city (less than 100,000 people) 19%
Rural area 13%
Not sure 1%
Do you have children? Yes 45%
Not sure 1%
EOL, Chronic Illness, and Trans-Identities 7
TABLE 1 Continued
To what degree are you
under financial strain?
How would you de-
scribe your sex?
Female to male 1%
How would you label
Refuse to be labeled 6%
Which term most closely
matches your gender
Gender queer 5%
Gender bender 1%
Third Gender 2%
Two spirit 3%
Note. In the initial Phase 1 of the TMLS survey, respondents were offered a choice of 14 different gender
self-perception labels from which to choose. Phase 2 of the TMLS survey, based upon the responses
from Phase 1, both in the survey commentary section as well as in the responses to the specific gender
self-perception question, now offers 24 possible label choices.
it is no surprise that each of the major gender self-perception categories
demonstrates a spectrum of sexual orientation responses. This is impor-
tant because many elders may not have bodies that conform to traditional
constructs of sexuality due to inability to pay for surgery or hormones. The
TMLS respondents were all reasonably to well-educated. Eighty-six percent
of the respondents had some college or higher. Table 1 summarizes the
8 T. M. Witten
education results. Income and financial strain levels are reported in Table
1. Exactly 46.4% of the respondents were under moderate to extreme
financial strain, and 77.9% of the respondents were under some degree of
financial strain. Employment status varied and is also reported in Table 1.
Religiosity, Spirituality, and Faith
Gerontological research has shown that religiosity, spirituality, and faith
can have significant impact on later-life mortality, morbidity, and sense of
well-being; yet transgender-identified individuals have been stigmatized,
ostracized, and victimized within mainstream Western society. While many
Western religions may reject or marginalize trans-identities (Kidd & Witten,
2008a), evidence suggests that some religions, either through mythological
beliefs or current day inclusion (Coleman, Colgan, & Gooren, 1992; Conroy,
2010; Smith & Horne, 2007). Because religiosity, spirituality, and/or faith
are important to many members of the trans-identified community (Kidd
& Witten, 2008b; Porter, Ronneberg, & Witten, 2013), we report that the
TMLS respondent population selected a broad distribution of possible
choices; 37% stated that they were believers in one of the traditional Judeo-
Christian-Islamic faiths, 3% reported being believers in one of the Eastern
faiths (Taoism, Buddhism, Confusianism), 4% reported believing in Wiccan,
Earth/Sun/Goddess faiths, Celtic/Pagan, while 22% reported being Atheist/
Agnostic. Lastly, 34% reported nonspecific faith/spirituality constructs or
were not sure.
Following the arguments in Porter etal. (2013), we grouped the reli-
gion, faith, spirituality categories into Abrahamic versus non-Abrahamic
groups (Eastern, Earth-based, Agnostic/Atheist, Self-constructed, Other).
There was a statistically significant difference between the numbers in
each of the spirituality groups by age-bracket. This is not a surprise as we
would anticipate some cohort effects here. In all cases, more of the respon-
dents claimed affiliation with one of the Abrahamic religions, except for
the 18- to 30-year-old group which claimed more Agnostic/Atheist affilia-
tions. The 31- to 50-year-old group claimed nearly as many Self-constructed
affiliations as Abrahamic affiliations, followed by Agnostic/Atheist affilia-
tions. In both the 51- to 60-year-old age-group, as well as the 61-and-over
age-group, more of the respondents chose Abrahamic affiliations followed
by statistically equivalent percentages of Self-constructed and Agnostic/
Atheist affiliations. Association of religious/faith/spirituality choice with gen-
der self-perception is also of interest. The results of a small-sample study
have been discussed in the article by Porter etal. (2013). However, their
sample considered only the elders of the TMLS survey respondents. When
we consider the full respondent population, we note that, across all gender
self-perception categories, the Abrahamic religions have the largest percent-
age of choice—Masculine identities (27.9%), Feminine identities (34.7%),
EOL, Chronic Illness, and Trans-Identities 9
Transgender identities (45.4%), all others (24.0%). This is followed by the
Agnostic/Atheist choice—Masculine identities (26.0%), Feminine identities
(22.7%), Transgender identities (19.4%), all others (21.8%). The third most
frequent choice, by gender self-perception, was Self-constructed faiths—
Masculine identities (20.9%), Feminine identities (17.9%), Transgender iden-
tities (18.5%), all others (28.5%).
Because EOL challenges are frequently discussed within the context of
religious, spiritual, and/or faith beliefs and because the traditional Western
religions frequently reject, marginalize, or otherwise invisibilize trans-
persons, EOL issues are not as easily discussed and pathways to things such
as where to be buried become problematic. For example, one TMLS respon-
dent reported that she was told that she would not be allowed to be buried
in the church graveyard of the church that she had attended for the bulk of
her adult life. The stated reason was that she was a transsexual.
In order to understand social support for the TMLS respondents, it is
important to understand the responses to a number of TMLS questions.
Sixty percent of the respondents reported that they had been married at
some point in their lives, while 40% responded that they had not ever
been married. When gender self-perception was factored in, there was a
statistically significant difference between those that claimed the feminine
and transgender self-perceptions versus those that claimed the masculine
and “all other” identities perceptions for both the “have been married” and
those that “had not been married” options. The respondents (46.2%) who
claimed feminine while 16.4% of the respondents claimed transgender as
their gender self-perceptions also said that they had been married at some
point in their lives. This is starkly in contrast to those who claimed the
masculine identity (19.9%) and those who claimed the “all others” identi-
Forty-five percent of the survey respondents stated that they had chil-
dren, while 55% responded that they did not have children. When we exam-
ine the interplay of child status with self-perceived gender identity, we see
that 26.6% of those who claimed masculine identities had children, 60.9%
of those who had feminine gender self-perceptions had children, 62.6% of
those who claimed transgender gender self-perceptions had children, and
32.8% of those who claimed “all others” gender self-perception had chil-
dren. Within the group that responded “Yes” to having children, there was
a statistically significant difference between gender self-perception feminine
and all other groups.
As was previously pointed out, loneliness can be a significant factor
in aging. The trans-identified population also experiences this. While living
alone is not equivalent to being lonely, it is important to note that a significant
10 T. M. Witten
fraction of the TMLS respondent population does, in fact, live alone. Exactly
30.7% of the respondents indicated that they were living alone, 38.4% with a
spouse/partner, 15.3% with a family member (parents, children, relative), 10%
with a friend, and 6% indicated other. The overall number is consistent with
that reported in Fredriksen-Goldsen etal. (2011). What becomes interesting
is how living status breaks out when the respondent’s gender identity is fac-
tored into the analysis. For those who claimed a masculine gender self-per-
ception (Masculine, Transman), 25.2% were living alone; while for those that
claimed a feminine gender self-perceptions (Feminine, Transwoman), 44.3%
were living alone. For those that claimed the transgender option for gender
self-perception (we cannot distinguish), 9.3% were living alone. This differ-
ence is statistically significant between all three groups as well as between the
masculine versus feminine gender self-perception group.
One way to assess social support is to ask who is likely to be a
person’s primary caregiver in the event of major illness or when the need
arises. The survey respondents were given a set of choices and asked to
choose only one response. Thirty percent of the respondents stated that
they were not sure who would take care of them. Thirty-nine percent
stated that they expected a significant other/spouse or partner would be
their caregiver. All other choices were less than 8% (friend, parent, sibling,
adult child, other biological relative, neighbor, paid in-home caregiver,
volunteer caregivers from faith organizations, volunteer caregivers from
Chronic Illness and Disability
Of those individuals who responded to the question “Do you have a chronic
illness?” 30.1% said “Yes” and 69.9% said “No.” Respondents who answered
the question “Do you have a disability” reported 27.1% “Yes” and 72.9% said
“No.” In both cases, there was no statistical difference across age-groups,
although χ2 was 0.09 for chronic illness and 0.085 for disability.
Of interest is living status, particularly living alone status, with respect to
having either a disability or chronic illness. Here, of those that reported hav-
ing a disability, 33.5% of them stated that they were living alone. Similarly, for
those that reported that they had a chronic illness, 38.2% were living alone.
If we further factor this by gender self-perception, then those with femi-
nine gender self-perceptions reported more living alone with chronic illness
than did all other groups (45.7%) with similar results for living alone with
disability (41.2%). These results suggest that the larger percentage of those
survey respondents that reported having a disability and/or a chronic illness
and that also reported that they are living along are natal males (feminine
Of those who reported a disability, 62.1% reported that they were under
extreme/moderate financial strain and 71.6% with a disability reported that
EOL, Chronic Illness, and Trans-Identities 11
they had not enough or just enough money to cover their expenses. Of those
who reported a chronic illness, 56.6% stated that they were under extreme/
moderate financial strain and 67.6% that they had not enough or just enough
money to cover their expenses.
LATER-LIFE AND END-OF-LIFE PREPARATION
Later-life EOL decisions often evolve from an intricate weave of ethical,
cultural, and religious beliefs; family relationships; socioeconomic status;
and public policy. Mainstream literature on religion suggests that having a
relationship with a religious leader or spiritual counselor is a positive pre-
dictor for EOL discussions (Blank, 2011). Yet, as we saw earlier, this is prob-
lematic for many trans-identified individuals who hold traditional Abrahamic
beliefs. EOL planning helps to uphold the integrity of the person’s wishes
and may increase peace of mind in later-life and EOL (Larson & Tobin,
2000). Yet it is hard to feel at peace if one is told funeral services cannot
be held in one’s church of choice due to one’s transgender-identification.
Failure to discuss EOL decisions can decrease the quality of death experi-
ence (Larson & Tobin, 2000). It is hard to discuss EOL decisions when the
gateway to that discussion is closed due to religious discrimination around
Little is known about EOL planning for transgender-identified older
adults. Similar to the general population, over three quarters of the LGB
baby boomers are estimated to have expressed their EOL preferences to
someone, although less than half of them have completed wills or living
wills which protect their EOL wishes (MetLife Mature Market Institute,
2010). However, the TMLS results point to a significantly more marginal
Pension and Retirement
TMLS respondents (59.5%) stated that they had a pension or other form of
retirement plan. When broken down by age-group, the 18- to 30-year-old
age-group was significantly lower, with respect to having a pension plan,
than all of the other age-groups. For those that stated that they did not have
a retirement or pension plan, the 18- to 60-year-old age-groups were statisti-
cally more than the 61-and-over groups. When broken down by gender self-
perception, those with female self-perception were statistically significantly
different and greater in percent having pension/retirement plans than all
other groups. All other age-groups were statistically indistinguishable (both
for the yes and no pension groups). The largest number of individuals not
having pensions was in the income levels less than $34,999. This represented
37% of the TMLS respondents. Across all income brackets except income
12 T. M. Witten
levels less than $24,999, those respondents who stated that they had a male
birth certificate had significantly more pension plan yes responses than pen-
sion plan no responses. For those that responded that they had a female
birth certificate, the breakpoint was $34,999.
Individuals that responded to the qualitative component of the pen-
sion question indicated that they had Roth IRA/SEO-IRA, 401 K, 403(b),
TIAA-CREF, RRSP plans, Canadian pension plans, teacher retirement
plans, a company pension, government plans. A number of them reported
military retirement, social security, SSA disability, and having mortgaged
their homes. Many reported that they were living on “a small pension,”
“disability support pension.” However, as one stated, “because of age and
illness, I have no plans for the future.” Others provided more complex
I am a medically retired Iraqi War Veteran receiving 50% disability
through the Veteran’s Administration. Since my disability is degenerative
my benefits will be for life and only increase as my condition worsens,
political intervention with benefits withstanding.
I deposit $100 biweekly into different mutual fund accounts. My
employer offers no benefits or retirement package whatsoever.
I had a 401 K from previous employment that is now invested in
mutual funds. It has contributions from only 7 years of employment in it.
I am currently under-employed with a firm that offers retirement benefits
for those with 5 years of service, but I may not be able to work there for
5 years because my position is funded by grants that come and go. I am
also self-employed, but do not have enough income to save additional
money. I hope to be able to work long enough to wait to draw Social
Security when it will have the maximum pay-out for me.
We also asked those who did not have pensions or other plans why they did
not have such plans. We received a variety of responses (all punctuation and
spelling preserved as written, answers anonymized where indicated):
Although I work full-time hours (usually), I am classified as a part-time
employee. My employer would match contributions to a retirement plan,
if I made any; however, I simply don’t make enough money for that to
be feasible. I live paycheck-to-paycheck—all my income goes to (barely)
cover my basic living expenses.
I always have been under employed since deciding to be a trans
person. I have not earned above the poverty line for the last 10 years so
there just is no cash left.
Because it takes almost everything that I make to survive. That was
really a stupid question!
I don’t make enough money to even live. letalone retire.
I don’t make enough money to get by day-to-day. Saving for the future
is just not an option right now. I used to have savings pre-transition and
EOL, Chronic Illness, and Trans-Identities 13
as soon as I came out as transgender within my little redneck town,
everyone stopped supporting me and my business and I ate through my
$10,000 savings within the first six months.
I have been let go/pushed out of various jobs, initially as a woman
for being too masculine and dyke-y, then as a man, for being trans/FTM.
I presently have no income. I did for many years, but am now deal-
ing with significant fibromyalgia and may need to apply for disability. I
have no income. My wife provides for me from her paycheck and retire-
ment monies. I spent the retirement money I had to pay medical bills
when I had no insurance. I have $4,000 left—if I die before retirement,
my wife can use it to have me cremated and for a memorial gathering,
etc.—because I am unable to get life insurance, due to being intersex
and transsexual. I was told my “partially female medical history—birth
to 35-years-old” means I could only be offered a female policy, even
though that would be fraud. (I’m 46 now.) I won’t try to get away with
I have been try to live my life from pay check to pay check I never pay
attention to it. Now is too late I have not even job and very soon I will
be came one more in the streets.
Morhaim and Pollack (2013) point out the significant importance of advance
directive documents as a personal, economic, public policy, and public health
challenge. In one of their studies, they found that “ … more than 60% of indi-
viduals aged 18 years and older want their end-of-life wishes respected; how-
ever, only about a third of them had completed advance directives” (Morhaim
& Pollack, 2013, p. e3). The TMLS results are far more disturbing. The Trans
MetLife Survey asked the participants to check off which of a list of later-life/
EOL decisions that they had completed. The overall preparation was marginal
at best. Only 13.1% a living will (advance directive), 14.1% of the respondents
had completed a will, 10.7% a durable power of attorney. All other possibili-
ties (ethical will, prearranged funeral/cremation or other EOL ceremony, pur-
chase of long-term care insurance, informal caregiving arrangements, other)
were less than 4% each. When broken down by age-bracket, 17.9% (18–30
years), 26.0% (31–50 years), 15.2% (51–60 years), and 8.1% (61 and over) of
the total respondent population had a completed will. When broken down by
age-bracket, 2.2% (18–30 years), 8.8% (31–50 years), 9.2% (51–60 years), and
9.1% (61 and over) had an advance directive. Lastly, when broken down by
age-bracket, 1.0% (18–30 years), 7.5% (31–50 years), 8.1% (51–60 years), and
7.4% (61 and over) had a durable power of attorney. Finally, in all possible
comparisons, there were statistically significant differences in having a will by
gender self-perception, birth sex, and living arrangement.
It is natural to ask whether or not chronic illness status and/or disabil-
ity status affected legal paperwork preparation. For example, does having
14 T. M. Witten
a disability and/or a chronic illness affect whether or not a person has
completed a will? In the TMLS responses, of those who said that they had a
disability, 36% stated that they had a will while 64% stated that they did not
have a will. For those that stated that they did not have a disability, 36.1%
stated that they had a will while 63.9% stated that they did not have a will
(no significant difference). While the overall percentages seem large, if we
scale this to the total population response, only 9.8% of the population was
both disabled and had a will and only 17.3% of the total population was dis-
abled and did not have a will. For those that were not disabled, 26.3% of the
total population had a will while 46.6% of the population did not have a will.
The results for having a chronic illness were a bit different. For those
that stated that they had a chronic illness, 42.6% stated that they had a will
while 57.4% stated that they did not have a will. For those that stated that
they did not have a chronic illness, 33.1% stated that they had a will while
66.9% stated that they did not have a will (differences statistically significant).
Similarly, if we scale this to the total population response, only 12.8% of the
population had a chronic illness and had a will and only 17.3% of the total
population had a chronic illness and did not have a will. For those that did
not have a chronic illness, 23.2% of the total population had a will while
46.8% of the population did not have a will. When we examined the rela-
tionship between having a living will and chronic illness/disability status, the
results were very similar and for want of space we do not report them here.
For the case of durable power of attorney, of those that reported hav-
ing a disability, 29% stated that they had a durable power of attorney while
71% stated that they did not. This represented 7.9 and 19.2%, respectively,
of the total respondent population. For those that did not have a disability,
24.9% stated that they had a durable power of attorney while 75.1% stated
that they did not. This represented 18.2 and 54.7% of the total respondent
Finally, for the case of durable power of attorney and those that
reported having a chronic illness, 30.9% stated that they had a durable power
of attorney while 69.1% stated that they did not. This represented 9.3 and
20.8% of the population, respectively. Lastly, those that reported not having a
chronic illness, 24.5% stated that they had a durable power of attorney while
75.5% stated that they did not. This represented 17.1 and 52.8% of the total
respondent population, respectively.
Paying for Later and End of Life
TMLS respondents were asked how they planned to pay for their long-term
care needs. They were allowed to check all choices that applied: 54%
responded Medicare, 44% responded health insurance, 37% responded per-
sonal savings, 30% not sure, 25% Medicaid, 13% assistance of family, 12%
long-term care insurance, 9% replied other, and 5% responded friends. As
EOL, Chronic Illness, and Trans-Identities 15
respondents were allowed to check multiple responses, it is likely that some
percentage of the respondents were using multiple methods to pay for their
later-life/EOL care. Of import is the fact that nearly one-third of the respon-
dents (30%) were not sure how they would pay for later- life and EOL care.
Moreover, most of the respondents were counting on some degree of gov-
ernment support (Medicare/Medicaid).
Many of the survey questions focused around fears and concerns of later-life.
Twenty-five percent of the respondents stated that they were extremely
concerned or very concerned that, at some age, they would be unable to
function independently because there was nobody to help take care of
them. Twenty-eight percent of the respondents were moderately concerned.
The remainder of the respondents reported that they were slightly con-
cerned or not concerned at all. When we factor the responses to the level
of concern question by gender self-perception, those with the feminine
gender self-perceptions had the highest response percentages across all
concern categories. The next highest percentages were masculine gender
self-perceptions. The differences were statistically significant. Two TMLS
As a trans person who wishes to transition I’m concerned with being
denied treatment because of certain health issues realted to my trans
Being abused, as my wife was, in health care settings at the end of
life while in a state of complete dependency on others. My wife died
horribly in pain and terror from overt homophobic physical abuse and
denial of treatment for infection in a nursing home while I was inca-
pacitated by serious complications following my double mastectomy for
breast cancer, and unable to visit her to monitor her care and well being.
She had had several strokes and was completely dependent on nursing
home staff for care, unable to ambulate or talk, or defend herself in any
Thirty-six percent of the respondents stated that they were extremely
concerned or very concerned that, at some age, they would be unable to
function independently for lack of financial resources. Twenty-three percent
of the respondents were moderately concerned. The remainder of the
respondents reported that they were slightly or not concerned at all. When
the respondents answers were factored by gender self-perception, feminine
gender self-perception had the most respondents in all categories except
the “extremely” concerned. Interestingly, respondents with masculine gender
self-perceptions expressed the largest percentage of “extreme” concern.
Thirty-two percent of the respondents stated that they were extremely
concerned/very concerned that they would not be able to function
16 T. M. Witten
independently because of physical limitations. When gender self-perception
was factored in, in all cases of degree of concern, the ordering was feminine,
masculine, transgender, all others. All differences were statistically signifi-
cant. Fears around dementia manifested most in the feminine, followed by
masculine gender self-perceptions.
Respondents were also asked to rank order a list of concerns about
aging as they applied to the individual respondent. The top four were, in
order of total rank: (a) Becoming unable to care for myself, (b) Becoming
sick or disabled, (c) Becoming dependent upon others, and (d) Becoming
confused or demented.
Respondents were also asked to state their degree of agreement/
disagreement with a set of statements about how they thought about the
future. The first question was, “I feel a sense of urgency about getting certain
things accomplished in my life.” The second question was, “I have tried to
get my affairs in order in case I die.” The third question was, “I have tried
to talk about my death with other people.” For the first question, 79% of the
respondents checked an agree category while 21% checked a disagree cat-
egory. For the second question, 56% of the respondents checked an agree
category while 44% checked a disagree category. For the third question, 54%
checked an agree category and 46% checked a disagree category.
Respondents were also asked, “How much confidence do you have
that you will be treated with dignity and respect as an LGBTIQ person by
your health care professionals at the end of your life?” Thirty-nine percent
responded that they had no/little confidence, 28% reported moderate con-
fidence, and 34% reported a good amount of confidence/100% confident.
Some interesting facts emerge when respondents are factored by age-group.
One surprising result is that the 61-and-over group had the most responses
in the good amount/100% confident category. The 31- to 50-year-old group
had the greatest number of no/little confidence followed by the 51- to
Survey respondents were asked to identify with whom they had
discussed their EOL care and treatment. In order of rank total, the respon-
dents checked: (a) Partner/spouse (43%), (b) Nobody (31%), and (c) Friend
(23%). All other choices (parents, adult child, sibling, neighbor, primary care
doctor, counselor/therapist, caregiver, other health care professional, spiri-
tual/religious/faith advisor/clergy, legal professional, financial professional,
other) were 15% or less.
Death and Dying
We know so little about death and dying in the United States (Lunney, Foley,
Smith, & Gelband, 2003). Death and dying in the transgender-identified com-
munity has only anecdotal stories associated with it. Many TMLS respondents
EOL, Chronic Illness, and Trans-Identities 17
feared their last days would be disrespected and that last wishes would not
be carried out:
There is no help. I pray to the gods I don’t get any sicker and that I can
relocate to a better climate—and that I can make a go of it there, because
if I ever got really sick I might never get out of a nursing home and just
wind up slowly tortured to death by people who think they’re doing it
for my own good.
I am already scared of death. I don’t want to die. Being transsexual, I
worry I will die thanks to some bigoted doctor … or something bad will
happen to me and they will let me die because I’m transsexual.
And I don’t even want to see the inside of a hospital—not unless I’m
dying, I don’t go to them unless it’s life and death because that’s a gam-
ble. Pardon my language, but I’ve had more medical malpractice from
doctors and specialists in anything else on down to orderlies who got so
distracted by my gender they couldn’t deal with what I was in for and
then disbelieved my physical long term disabilities because they literally
don’t listen to the patient.
Many others commented that they were worried that their gravestones
will carry the incorrect name/gender identity or that their death certifi-
cates will not accurately reflect who they are despite the expressed legal
wishes of the decedent (Haley etal., 2002; Witten, 2004b, 2009).
RESPONSES TO OPEN-ENDED QUESTIONS
The previous sections illuminate the diversity and complexity of the
lives of the TMLS respondents across multiple response categories.
Remembering that the TMLS respondent population is relatively well-off,
the degree of reported difficulty supports the potential hypothesis that
in other populations the difficulties are worse, the lack of preparation is
greater or even marginal to nonexistent, and perceptions are increasingly
fearful. However, percentages homogenize the deeper subtleties of indi-
viduality. Nearly every question in the TMLS also afforded the respondent
to provide us with their own words around the particular question. We
want to honor those who chose to provide those comments by sharing
some of the responses we received.
The first open question we asked was, “We would like to know more
about your worries and concerns about aging. Please feel free to write as
much as you would like to tell us. What are your worst fears/concerns about
aging as a person who is GLBTIQ-identified.” Many spoke of discrimination
by caregivers, fears of cruelty and abuse, fears of being homeless and of
dementia, and fears of not being allowed to live their final years as their
18 T. M. Witten
true selves (all responses are reported as written and anonymized where
(1) Finding a primary health care provider who is willing to work with me
(i currently commute 2 hours to the nearest big city to see a doctor cause
i couldn’t find anyone in my area) (2) Discrimination/cruelty/harassment
at the hands of any attending care providers i might be dependent on
(3) If my financial plans do not work out (saving for a house of my own)
and i am forced to live in a retirement community, i fear having my trans
history revealed and facing discrimination and harassment in my place
A disability so severe that I can neither take care of myself nor end
aging has and will continue to erode my ability to defend myself
against a homophobic.
Aging in general concerns me. I never expected to get to a point in
my life where I actually wanted to live. Now that I do I’m not sure how
to plan such specific details. I do not want to suffer or be a burden. I do
not want to rely on strangers in the medical field that have little to no
experience helping people with bodies like mine.
As i am only part-time in each gender i am worried that i will be in
some situation that will force me to be considered totally masculine and
not able to express my femininity. This would be due to fear of reveal-
ing information about myself because of fear of abuse. Another concern
is being dependent and therefore assigned to “the boy’s room” mean-
ing exile from femininity. I’m afraid of being left out of the company of
as i am really unprepared for retirement and any surgery. i worry I
will die without any surgery which will make caregiving challenging. as
a caregiver now, i see how easy it is to be neglected and a trans person
without surgery could very easily fall into this.
Being abandoned and alone. Dying alone.
We also asked the question, “To what do you look forward as you age?”
Many spoke of “a peaceful death.” A number of respondents had positive
responses (McFadden etal., 2013). Many stated that they looked forward to
the opportunity to complete their respective journeys so that they became
actualized. Others spoke of growing old with their respective partners, fami-
lies and friends:
I am going to be a house-husband. I will become much like a 1950 s
housewife on a TV show would be. June Cleaver. Harriet Nelson. I won’t
have to work outside the home. I will be able to wear what I want, and
make our home comfortable and nice. I will learn to cook good healthy
and interesting meals. I will provide comfort and support to my wife who
continues to work. I will watch my adult daughter who is an accomplished
violinist and world traveler complete her education and grow in her career.
EOL, Chronic Illness, and Trans-Identities 19
Others spoke of darker matters. Some spoke of self-euthanasia or
suicide rather than living to a point where they were in their later years:
Will I be treated with dignity? Will I be respected? Will I be in a
defenseless situation at the mercy of those that do not or are unwill-
ing to understand me being trans? Will I be able to afford care or will
I be living on the street or worse? There just are no good examples of
older trans people around Tacoma that I have seen. Not much hope
here for me getting old. Will I have to kill myself so I do not have to
face begging from the state for crumbs? There is nothing in this area
for older trans folk and this is known as a progressive state! We live in
one of the good ones. I hate to think how it is living in a red state. It
makes me cry.
[My disability] It is bad and getting worse. Quite frankly, I can’t see
much alternative to suicide at this point.
I plan on committing suicide at 60 or earlier.
The day that I need a caregiver, I will implement my end of life suicide
As we earlier pointed out, such fears and concerns frequently prevent
an individual from pursuing needed EOL preparations as the expectation
is that an individual will not receive respectful, culturally competent health
care. Many TMLS participants stated that they would prefer to die at home
rather than be in a palliative care or nursing home facility. Further explana-
tion showed these respondents to be fearful of the type of care that they
would receive; would they receive the right painkillers, would the care be
respectful, would they be abused or violated, would their gender identities
be respected, would they be allowed to live their last moments with grace
As we have already noted, this is a biased study. It is principally a Caucasian,
English-speaking, educated with reasonable income-level, population that
has the capability (computer literacy and access) to respond to the survey.
As such, it can be said to represent a “best of the worst case” scenario in that
we conjecture that outcomes will be gloomier in other less well-off respon-
dent populations. The study has been translated into Spanish and is being
into other languages as well. We hope to mount the Spanish language study
Another limitation is that we did not provide a list of chronic diseases/
disabilities from which respondents could choose. Thus, respondents might
not have viewed their particular chronic diseases/disabilities as such; thereby
biasing the responses. Lastly, we did not ask questions about whether or not
20 T. M. Witten
an individual was living full-time, how long that individual had been living
full-time, and at what age they started living full-time. All of these questions
could have further helped us in dissecting out the impact of gender self-
perception on other variables such as living arrangements, fiscal status, and
EOL preparations and perceptions.
The TMLS gathered an extensive amount of data concerning how the global,
English-speaking, trans-identified population perceives and prepares for the
challenges of late-life and EOL. A focused analysis on the religiosity, spiri-
tuality, and faith data from the TMLS may be found in Porter etal. (2013).
A focused qualitative analysis, on resilience and coping, based upon a
restricted subset of the TMLS data may be found in McFadden etal. (2013).
In the current article, we have presented the basic demographic results and
the responses to the preparation and perception for later and EOL series
of questions from the TMLS and reported how these results are potentially
impacted by disability and chronic illness.
In the TMLS we found that the global, English-speaking, Caucasian
trans-identified population is ill-prepared to meet the challenges of later and
EOL; particularly from the legal document and preparation perspective. We
hypothesize that this will be far worse in other, less well-off, trans-identified
minority populations. As we have already noted, whether or not the individ-
ual has or does not have a chronic disease or disability appears to make little
difference in the overall preparation.
We have seen that, while a number of respondents have pension plans
and later-life income preparation, many do not and are living “paycheck
to paycheck.” A small fraction of the respondents opened up profoundly
by sharing that they were thinking of “euthanasia” because they could not
face the potential negatives of growing old as members of the transgender-
identified community. This was an unexpected and profoundly disturbing
The concept of chronic illness and disability are embedded within the
construct of a body that does not function or a mental illness that somehow
prevents an individual from functioning effectively within society. However,
as the condition of being a “trans-identified” individual is considered a
mental illness (DSM IV-TR, code 302.85) being trans-identified could, itself,
be viewed as a chronic illness or disability through which an individual
must navigate the world of normative social constructions. Thus, in one
sense, every respondent to the TMLS could be seen as living with a chronic
condition that carries with it social disability and socially induced disease
states from the perspective of lack of culturally competent health care and
support. While members of the transgender-identified community do not see
EOL, Chronic Illness, and Trans-Identities 21
their state of being as a mental illness, and while there is a strong movement
to have gender identity disorder (GID) removed from the DSM V; neverthe-
less, these individuals must still navigate their lives in a world that views
them as chronically disabled/disordered/diseased and consequently sets up
barriers as a response to that state of being. As a result, TMLS respondents
who report having a chronic illness or disability are, in one sense, doubly
chronically ill or doubly disabled. Add to that the stigma and challenges of
being aged and the elders of the global transgender-identified community
face a triple set of difficulties, each of which would be a challenge but,
through their interaction emerge complexities that could not have been pre-
dicted or understood by the knowledge of any single one of the categories.
We have seen that cohort and subgroup effects are prevalent among the
many variables discussed in the TMLS. Differences in educational level, fiscal
status, and EOL preparation are obvious examples of this fact.
Facilities and individuals that serve trans-identified individuals, at any
stage of their respective journeys, especially those in mid- to later-life, need
to raise the discussion concerning legal preparations for the challenges
of growing old as a member of the trans-identified community. Questions
around legal and ethical will preparation, financial and medical power of
attorney, burial/cremation choices, funeral desires, caretaking needs, long-
term care insurance, and many other legal requirements must be addressed.
A number of TMLS respondents stated that they either “did not know how”
to even go about getting such things while others stated “thank you for
bringing this up. I had not thought about how important these items are.”
The endemic negativity against and fear of health care providers, cou-
pled with fears around the normative consequences of aging— physical
weakness, decreased mental capacity, inability to take care of oneself, etc.—
prevent many trans-identified individuals from seeking the health care that
they need as they grow older in their physical bodies. Health care work-
ers need to be educated about culturally sensitive ways of interacting with
the various trans-embodiments that they could meet as the global transgen-
der-identified population ages. Cultural competency training needs to be a
Many of the global caregiving organizations are faith-based. However,
many of those faiths also discriminate against LGBTIQ members; particularly
those who are trans-identified. Many of these organizations, while stating
that they are nondiscriminatory, do not have culturally competent training
for their members, nor do they necessarily want those trainings. Thus, the
organizations are not aware of the needs of the transgender-identified popu-
lation. Religious- and lay-providers and caregivers must be better equipped
to meet the spiritual needs of this exceptionally diverse population with-
out imposing harmful beliefs or interventions. Faith-based organizations
need to be aware that although they may think they are not serving trans-
gender adults, this is not the reality as the trans-identified population ages
22 T. M. Witten
and as their utilization of caregiving facilities increases. Training programs
cultivating awareness must be made available to faith-based aging organi-
zations to provide a more profound understanding of the unique needs of
this population and that sensitize service deliverers to the diversity of this
population. Finally, aging service providers must develop inclusive respect-
ful policies and protocols to address the bio-psycho-social-spiritual needs of
the trans-identified client.
EOL providers, as well as institutions such as nursing homes and com-
munity-based supports, are encouraged to discuss EOL planning with trans-
gender older adults. In addition, it may be useful for nursing homes or other
institutions which typically provide religious programming for their clients
to include a similar program for individuals who are atheist or nonaffiliated
with any religion where their beliefs or lack thereof could be explored and
discussed with others. It may be that one’s level of social support, found
among members sharing similar beliefs, is what leads to successful aging and
to exiting this life with grace.
The transgender-identified is a population that, for the most part, very
much wants to have a religious or spiritual community, but is not connect-
ing and benefitting in the way that mainstream nontransgender-identified
members are. Religious and spiritual leaders have an opportunity to develop
more intimate dialogue with transgender-identified members, as well as the
religious community at large about inclusion.
In conclusion, transgender-identified older adults navigate a complex
web of interacting factors that create many levels of difficulty. They are mar-
ginalized within the “normative” community, the LGBT community, the aging
community, and rarely directly included in gerontological research. We end
with the following potent response by one of the TMLS respondents:
[I fear/worry about] Being alone, isolated and poor without basic things
I need … all those things needed to give joy and purpose for existing.
All of these are the consequence not of aging but of being marginal-
ized and denied the benefits of society. … No one ever chooses to be
transgendered and punished for it by being cut-off from what society
has to offer.
I would like to thank my many colleagues, friends, and collaborators among
them Deirdre Condit, Brian de Vries, Brian Grossman, Susan McFadden,
Mark Brennan, A. Evan Eyler, Jamison Green, Kristin Porter, and Corina
Oala for their many thoughtful and stimulating conversations over the years.
I would also like to thank the Metropolitan Life Insurance Company for
their willingness to share their Version 2.0 GLBT survey instrument and
to allow me to make the subsequent modifications needed to focus it on
EOL, Chronic Illness, and Trans-Identities 23
trans-identity needs and challenges. I would like to thank the reviewers for
their detailed comments. These helped to improve the quality of this manu-
script. Supplementary resources, copies of the author’s research papers, and
the survey instrument are available at the author’s website (http://www.
people.vcu.edu/~tmwitten) under the GLBTIQ Archives button.
Lastly, and most importantly, I would also like to thank my many past
clients and the numerous study and survey participants, who over the past
nearly 20 years, have provided me with their respective participation, illumi-
nating dialogues, and overall willingness to share their stories, thoughts, and
concerns without which my colleagues and I would have little to give back.
I am honored to be given the gift of such trust.
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