Overview of recommendations for quality care at the end of life for Lesbian, Gay, Bisexual, Transgender, and Questioning or GenderQueer patients. Caring as a cultural competency.
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LGBTQ: Care at the End of Life
1. LGBTQ: Care at the End
of Life
Andi Chatburn, D.O., M.A.
Fellow, Hospice and Palliative Medicine, KUMC
2. LGBTQ – what?
L = Lesbian
G = Gay
B = Bisexual
T = Transgender (NOT orientation)
Q = Questioning OR Queer
A= Ally
3. But we live in KS/MO …
2009: Won 2 Oscars,
nominated for 6
Rainbow House across street from
Westboro Baptist Church, Kansas
4. Disclosure
I don’t claim to be unbiased on
this topic
Unfortunately I’m not being paid
to promote this bias
5. Goals: Cultural Competency
Introduction
Terminology, Pronouns
Gender vs. Sexual Orientation
QOL maximization
Safe space
Hormone therapy basics
Patient-centered care
Mental Health
Suicide and Self Harm Risk
6. Why? Healthy People 2020
Harm reduction
Preventative care
Mental health
Substance abuse reduction
Quality End of Life Care
QOL maximization
Safe space
Hormone therapy for transgender patients
Patient-centered care
Healthypeople.gov/2020
7. Why is this relevant to #HPM?
IOM Report 2011 “The Health of LGBT People”
High levels of joblessness and poverty
2-3x less likely to have health insurance
Both private and public health care plans
severely limit transgender access to surgery
Primary Care Protocols Project
Less access to Primary Care Physician
Provide accurate, peer-reviewed medical
guidance for care of transgender patients
Belzer, et al.
8. Hospice Foundation of America
There are between 2-7 million
LGBT older adults in the U.S.
Aging and health don’t
discriminate
Advance Directives are essential
for LGBT seniors
9. All human beings deserve
compassionate care
delivered in a manner that
is respectful of their
personhood and personal
definition of family
10. LGBTQ at EOL
Many go back into the closet when they are
in need of assisted living, home nursing,
hospice
Barriers: Health, Isolation, Income
Lack of culturally competent caregivers
Stigma: born in an era of strict gender
roles
Lack of insurance
Successful careers while in the closet
Ettner and Wylie, 2012.
11. LGBTQ Aging
It’s not uncommon or unusual for transgender
patients to present for the first time to a
physician as transgender in their 60-80’s
Hormone therapy and/or surgical therapy can
still improve QOL and is still appropriate in the
elderly
Cases of Elderly individuals desiring to start
transitioning with hormones, surgery or both
Ettner and Wylie, 2012.
12. LGBTQ at EOL
Retirement and/or death of a spouse
brings on the feeling that “life is short”
“Who am I?” comes back up
“Will I die never having lived life
authentically?”
Age related changes can bring on humor,
self distance, and honesty
Ettner and Wylie, 2012.
13. Barriers for LGBTQ throughout life
Housing and job discrimination
Verbal and physical abuse
Proscriptive marriage and adoption laws
Family, religious, societal disdain
Discrimination on definition of family in hospitalsvisiting privileges
Families of Origin vs. Families of Choice
Funeral arrangements, benefits for partners after
death
14. We don’t live in a binary gender society
anymore. Solidarity says we are more
alike than different.
15. Gender vs. Sexual Orientation
Gender Identity: one’s sense of self as male, female or third
sex
Gender Presentation: the expression of gender
Genderqueer: one who defies typical binary gender roles and
lives outside expected gender norms
Transgender: literally “across gender” or “beyond gender”
Transition: period of time when a transgender person is
learning how to cross-live socially as a member of the gender
category opposite their birth sex/natal gender
Sexual Orientation: sexual attraction to
males/females/transgender individuals, both, or none
Itspronouncedmetrosexual.org; also at www.transhealth.ucsf.edu
19. Pronouns Matter
Intro to Gender Neutral/Gender
Variant Pronouns
Ze-She-He
Per-Him-Her
Mx-Mr-Ms-Mrs
Hersband-Husband
More can be found at
itspronouncedmetrosexual.com
itspronouncedmetrosexual.com
20. Practice Recommendation:
ASK!
About gender identification
About sexual orientation
About bullying/violence (from
peers OR family)
Teach that they are different
Allow as safe space for
questioning
21. When does gender change?
It’s a spectrum:
Lifestyle/Social
Hormone
Legal
Surgical
Some patients want all of the above
Some want some of the above changes but not
all- and it’s all ok.
Genderqueer patients may not desire any
hormone therapy or may desire fluctuating
hormone therapy
22. Transgender: Things to Remember
A transgender patient’s body may have elements,
traits, or characteristics that do not conform to the
patient’s gender identity.
For trans people, their anatomy does not define
them.
Do not define the person by their sex assigned at
birth
Provide usual care for the anatomy that is present,
regardless of their gender identification.
Ask before doing.
Belzer, et al
23. How ought we change practice?
Honor the patient’s gender identity and use
the terminology the patient prefers
Patient intake forms
EMR capability of “other” for gender
Unisex bathrooms
Letters to patients/family with desired
pronouns
The Joint Commission
27. Risk/Benefit: Quality of Life
Only absolute contraindication to hormone
therapy is estrogen- or testosteronesensitive cancer
Informed consent is key.
Patient-centered outcomes vs. diseasecentered outcomes
Obesity, CV disease, dyslipidemia,
hepatitis, HIV are all conditions that
should not preclude treatment insetting of
Belzer, et al.informed consent
28. Transgender Hormone Therapy
Goal: induce or maintain the physical and
psychological characteristics of the sex that
matches the patient’s gender identity
Cross-sex hormone administration offlabel
Gender dysphoria no longer in DSM-V
ICD-9: “Hormone imbalance in
transgender individual”
29. Med List Review:
Basic Transgender Hormone Tx
FTM
Testosterone IM/TD Patch/TD Gel
(axilla), SC depo implant (SOR B)
Allergy warning: suspended in oil:
Cottonseed (cypionate)
Sesame (enanthate)
Peanut oil (Europe only)
Belzer, et al
30. Med List Review:
Basic Transgender Hormone Tx
MTF
Estradiol (SL, TD, IM/SC)- avoid 1st
pass liver metabolism (SOR B)
Anti-Androgens: Spironolactone,
Finesteride (SOR C)
MedroxyProgesterone – not well
studied
Belzer, et al
31. Surgical Options: MTF
Orchiectomy
Vaginoplasty (using penile tissue or colon graft)
Penectomy
Breast Augmentation
Reduction Thyrochrondroplasty
Voice surgery
Facial Feminization
Belzer, et al
32. Surgical Options: FTM
Bilateral Mastectomy/reudction
Hysterectomy/Oophorectomy
Metoidoplasty- construction of male appearing
genitalia from testosterone-enlarged clitoris
Phalloplasty
Scrotoplasty
Urethroplasty
Vaginectomy
Belzer, et al.
33. Long-term side effects of cross-sex
hormones
FTM
No increase in CV events, hormonerelated cancers, or osteoporosis
MTF
25%: thromboembolic event
6%: CV after avg 11.3 years of
estrogen
Many: osteoporosis
No reports of hormone-related cancer
Wierckx K, et al. 2012.
35. Substance Abuse
Not universal, but LGBTQ use is more prevalent
than the general population
New York Transgender Project:
Heavy alcohol use: 60.4%
Marijuana: 40%
Cocaine 21%
Stimulants 3.9%
Opiates 3.5%
Higher in younger MTF Transgender people
Nuttbrock, L. 2012.
36. Mental Health
Risk factors in LGBTQ+ Youth (n=246):
#1: Hopelessness
#2: Hx of Suicidal Ideation
Baseline Impulsivity
Self Harm
Sensation Seeking
Gender Nonconformity
History of Attempted Suicide
LGBT Victimization
2.5 fold increased risk for self harm
Liu, R., et al. 2012.
Lack of Social Support
37. Mental Health: Screening Tools
Brief Symptom Inventory (BSI-18)- Screen for Suicidal
Ideation
ARBA computerized self-administered interview
designed for adolescents
Barratt Impulsiveness Scale (BIS-11) Brief Sensation
Seeking Scale (BSSS)
Boyhood Gender Conformity scale
Hopelessness Scale for Children (originally designed
for use w/ ethnic-minority youth)
10 item measure (D’Augelli) – LGBT victimization
MSPSS= Multidimensional Scale of Percieved Social
Support
Liu, R., et al. 2012.
38. All human beings deserve
compassionate care
delivered in a manner
that is respectful of their
personhood and personal
definition of family
46. Bibliography
Pictures from google images and Wikipedia
Web site: itspronouncedmetrosexual.com
Healthypeople.gov/2020/topicsobjectives2020/overview
Marvin Belzer, et al. Center of Excellence for Transgender Health. Transgender Health Learning Center. Department of
Family and Community Medicine at UCSF. Accessed at www.transhealth.ucsf.edu
Randi Ettner and Kevan Wylie. Psychological and social adjustment in older transsexual people. Maturitas, November 2012
226-229.
Joint Commission, The. Advancing Effective Communication, Cultural Competence, and Patient- and Family-Centered Care
for the Lesbian, Gay, Bisexual, and Transgender (LGBT) Community: A Field Guide.
Richard T. Liu, PhD, Brian Mustanski, PhD. Suicidal Ideation and Self-Harm in Lesbian, Gay, Bisexual, and Transgender
Youth, Am J Prev Med 2012;42(3):221-228.
Larry A. Nuttbrock PhD (2012): Culturally Competent Substance Abuse Treatmetn with Transgender Persons, Journal of
Addictive Diseases, 31:3, 236-241.
Wierckx K, et al. Long-term evaluation of cross-sex hormone treatment in transsexual persons. Journal of Sex Med. 2012
Oct;9 (10): 2641-51. Epub 2012 Aug 20.