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.

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

16. Pride Flag:
Diversity
•
•
•
•
•
•
•
•
hot pink: sexuality
red: life
orange: healing
yellow: sunlight
green: nature
turquoise: magic/art
indigo/blue:
serenity/harmony
violet: spirit

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

26. Transgender Hormone Therapy

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.

34. Mental Health

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

39. Great Resources

40. www.hospicefoundation.org/hic-lgbt

41. www.lgbtagingproject.org

42. www.sageusa.org

43. http://transhealth.ucsf.edu/

44. www.fenwayhealth.org

45. Questions?

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.