LGBTQ: Care at the End of Life


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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. 1. LGBTQ: Care at the End of Life Andi Chatburn, D.O., M.A. Fellow, Hospice and Palliative Medicine, KUMC
  2. 2. LGBTQ – what?  L = Lesbian  G = Gay  B = Bisexual  T = Transgender (NOT orientation)  Q = Questioning OR Queer  A= Ally
  3. 3. But we live in KS/MO … 2009: Won 2 Oscars, nominated for 6 Rainbow House across street from Westboro Baptist Church, Kansas
  4. 4. Disclosure I don’t claim to be unbiased on this topic Unfortunately I’m not being paid to promote this bias
  5. 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. 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
  7. 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. 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. 9. All human beings deserve compassionate care delivered in a manner that is respectful of their personhood and personal definition of family
  10. 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. 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. 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. 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. 14. We don’t live in a binary gender society anymore. Solidarity says we are more alike than different.
  15. 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; also at
  16. 16. Pride Flag: Diversity • • • • • • • • hot pink: sexuality red: life orange: healing yellow: sunlight green: nature turquoise: magic/art indigo/blue: serenity/harmony violet: spirit
  17. 17. 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
  18. 18. 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
  19. 19. 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
  20. 20. 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
  21. 21. 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
  22. 22. Transgender Hormone Therapy
  23. 23. 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
  24. 24. 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”
  25. 25. 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
  26. 26. 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
  27. 27. Surgical Options: MTF  Orchiectomy  Vaginoplasty (using penile tissue or colon graft)  Penectomy  Breast Augmentation  Reduction Thyrochrondroplasty  Voice surgery  Facial Feminization Belzer, et al
  28. 28. 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.
  29. 29. 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.
  30. 30. Mental Health
  31. 31. 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.
  32. 32. 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
  33. 33. 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.
  34. 34. All human beings deserve compassionate care delivered in a manner that is respectful of their personhood and personal definition of family
  35. 35. Great Resources
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  41. 41. Questions?
  42. 42. Bibliography  Pictures from google images and Wikipedia  Web site:   Marvin Belzer, et al. Center of Excellence for Transgender Health. Transgender Health Learning Center. Department of Family and Community Medicine at UCSF. Accessed at  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.