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Explore the demographics, history, healthcare access, and disparities faced by LGBT veterans at the end of life. Learn about current VA programs, research, and support available in this area.
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LGBT Veterans and End of Life Considerations Jason Malcom, LCSW July 6, 2017
Overview • Demographics • History • Healthcare Access & Disparities LGBT • Veterans at end of life. • Progress but… • Current VA programs • Research & Support
Before we begin • All questions are welcome. • Terms, language constantly changing within LGBT population • E.g.-queer
Terms & Definitions(by no means an exhaustive list) • LGBT • LGBTQQIAA • Family of Choice • Cisgender - A term used to describe a person whose gender identity aligns with those typically associated with the sex assigned to them at birth. • Heterosexism—A belief system that values heterosexuality as superior to and/or more ‘natural’ than homosexuality • Homophobia—Fear or hatred of lesbian and gay people
Terms & Definitions • Internalized Homophobia– Refers to negative feelings that LGBT people have towards themselves because of their homosexuality • Ally– Someone who confronts heterosexism, homophobia, biphobia, transphobia, heterosexual and gender-straight privilege in themselves and others • Orientation– The desire for intimate emotional and/or sexual relationships with people of the same gender/sex, another gender/sex, or multiple genders/sexes. • Gender Identity– A person’s sense of being masculine, feminine, or other gendered. • MSM– Men who have sex with men.
Demographics A wide variety of estimates: • Kinsey put estimates at 10% • 2013 National Health Survey put the numbers at: • 1.6% identify as gay or lesbian • 0.7% as bisexual and • 1.1% as “something else” • Still other surveys place the estimate anywhere from 6-12% • Why are these estimates so wide in their range? • Fear • Stigma • Problematic wording used on surveys • People may not identify with how the question is being asked
VA health care LGBT Demographics • VA is likely the largest single provider of health care for LGBT in U.S. • Estimates of LGBT population in Military are about 2-3% or about 70,000 LGBT serving in Armed Forces at any given time. • Estimate is likely similar in VHA, but no way to collect this data currently. No screening question. (@ 9.5 million VHA enrollees equals @ 250,000 LGBT veterans?) • Unknown, but some data suggest there may be between 2000-6000 trans veterans in the U.S. (problematic = based on GID dx and surgeries)
Military history & Don’t Ask Don’t Tell (DADT) • 1950, Truman signs the Uniform Code of Military Justice— banning LGB from military service, includes discharge rules for LGB service members (dishonorably, court-martialed) • Reagan’s defense directive reasserted that “homosexuality is incompatible with military service and members engaging in homosexual acts should be discharged” • 1992-Clinton’s campaign promise to lift ban.
Military history and Don’t Ask Don’t Tell (DADT) continued…. • “Don’t ask, don’t tell” was introduced as a compromise. • Restricted the U.S. Military from efforts to discover or reveal closeted LGB service members • 14,000 LGB service members discharged since WWII because of actual/perceived LGB (many dishonorably) • still barred LGBT from being open about who they are. • Led to continued secrecy, isolation, marginalization, etc. • DADT repealed on 09/20/2011 • But same-sex spouse of LGB service members were not treated on par with different-sex spouses of military service members due to DOMA. • On 2/11/2013 the Sec of Defense (Leon Panetta) announced the extension of some benefits to same sex spouse of service members
A Long History…. Centuries of: • Prejudice • Discrimination • Homophobia • Violence • Stigma • Oppression in our: • Institutions • Legal systems • Schools • Organized religion • Healthcare • Businesses & Corporations • Families • Communities • Media has led to the belief by many that…..
HIV/AIDS epidemic • Historically, homosexuality has been linked to illness • When HIV/AIDS hit, this continued • Epidemic began in 1981. From then on, AIDS would be linked to LGBT community (especially gay males) • At one point it was called GRID—Gay Related Immunodeficiency Disease • Initially little was done by country to address the growing concern • A lot of fear surrounded the disease • High initial mortality rate + no initial institutional support Protest, organization, and Advocacy.
LGBT Veteran Healthcare access/needs • Homophobia, • DADT • HIV/AIDS • discrimination, stigma, • Violence • fear/ignorance from providers, & society historically viewing gay as a disease • Lack of culturally competent health care All has a lasting impact on healthcare access, healthcare needs, and healthcare disparities for LGBT
Healthcare access(little research on this matter) • Just 33% of LGBT veterans reported open communication regarding sexual orientation with VHA providers • 25% of LGBT Veterans reported avoiding certain VHA services due to concern about stigma • 1/3 of LGBT veterans and VA providers alike, viewed VHA as welcoming to LGBT veterans • 50% of VHA providers are reluctant to raise sexual orientation status with patients (similar to non-VHA healthcare settings).
Health Care Access (continued) • Anecdotal reports: LGBT veterans are unlikely to disclose their sexual orientation for fear that this info will impact ability to receive pension/disability benefits and/or result in poor care, discrimination, or rejection following disclosure. • Finding culturally sensitive health care providers can be difficult • Thus LGBT may engage in protective strategies to avoid conversations regarding sexual identity, which in turn may hinder preventative health screening. • Family of Origin vs. Family of choice
Health disparities of LGBT & Veterans Veterans who use VHA: Studies suggest that LGBT Population have higher rates of: Smoking Obesity or being overweight Being exposed to traumatic events Substance abuse Suicidality Depressive disorders Anxiety disorders Higher rates of HIV and other STIs among MSM Possibly higher rates of interpersonal violence in veteran Lesbian and bisexual communities Lesbians have a higher lifetime risk for breast, cervical, and ovarian cancer than heterosexual women 40% of transgender adults report having made suicide attempt (0.6% for general population) • Are more likely to be older, less well educated, and unemployed than other veterans • Have worse perceived health, use more health care, and have more comorbidities. • All veterans are at increased risk for • PTSD • Depressive disorders • Anxiety disorders • Substance abuse • Suicidality Being a member of both Veteran and LGBT communities likely contributes to a higher level of risk for poor health and mental health than membership in just one of these communities.
Health Disparities of LGBT Veterans Thus, Being a member of both Veteran and LGBT communities likely contributes to a higher level of risk for poor health and mental health than membership in just one of these communities.
LGBT Veterans at EOL • Could not find any studies on LGBT veteran needs at EOL • LGBT population have the same basic health needs as general population BUT • Further exploration of mental & physical health needs of LGBT veterans is needed.
At end of life LGBT population: • More likely to live alone • (especially gay men—2-3x) • Less likely to have a partner/spouse • (especially gay men—2-3x) • Less likely to have children • (especially gay men—4x)
LGBT Veterans at EOL • The factors affecting access to general healthcare are present in accessing EOL care. • Finding culturally sensitive health care providers can be difficult • Older LGBT people may go back in the closet for fear of mistreatment • Family of Origin vs. Family of Choice –Not all states and hospitals respect or recognize this—default legal protections such as NOK and “family visitation” do not automatically apply • Disenfranchised grief—grief that is not acknowledged or recognized because the relationship is not validated • Advanced Care Planning becomes very important
Myths still abound, in society and in healthcare….. • It is a choice • You are just confused • Your Bisexuality is just a phase • Belief that a transgender person is really gay and not transgender • All transgender people have surgery • Many myths based on many factors such as media representation, homophobia, etc.
Recent proposed laws • March of 2016, HB2, “bathroom bill”, in North Carolina • As of April 15th, 2016 there are 100+ active bills across 22 states seeking to legalize discrimination against LGBT people. • Creation of a ‘Religious Freedom’ executive order?
A worsening national tragedy The number of trans people killed in 2016 rose to 25. Disproportionately trans women of color. 40% of transgender adults report having made suicide attempt
Progress made – still a ways to go • Repeal of DADT in 2011 • Repeal of DOMA in 2013 • June of 2015 Supreme Court ruled: Constitution guarantees a right to same-sex marriage • Same-sex Benefits • Work-place discrimination • Trans service members can now serve openly, June 2016 • 35% of Americans supported same-sex marriage in 2001 & in 2016 55% of Americans support same-sex marriage (pew poll)
LGBT Veterans-more research is needed • All Research on specific LGBT populations in VHA is in it’s infancy. • Most existing studies focused on gay or bisexual men and some aspect of HIV. • Few studies about LGBT needs, preferences, views, and experiences with EOL and Palliative Care. • Very few studies on transgender veterans have focused on prevalence of Gender Identity Disorder, suicide rates, and health care utilization. • No studies were found that aimed to explore the needs and experiences at EOL for transgender individuals
Current VHA Programs/Policies to reduce Healthcare Disparities for LGBT Veterans • VHA has implemented Women’s Health Clinics • VHA has created The Office of Health Equity (established in 2012) • Sexual orientation and gender identity and expression are now included in VHA nondiscrimination policies • June of 2011 VHA released first national policy to describe services available to transgender veterans (hormone therapy & pre-op eval for sex reassignment surgery) • Policy also states a zero tolerance policy on discrimination towards Transgender population.
Current VHA Programs/Policies to reduce Healthcare Disparities for LGBT Veterans • Caregiver policies have been revised to include broad definitions of caregiver and family • Now two part time LGBT program coordinator positions in the Office of Patient Care Services. • Spring of 2016—each VA Health Care System at least 1 LGBT Veteran Care Coordinator. • Beginning in June 2017, CPRS will show 2 new demographic fields: • Birth Sex • Self Identified Gender Identity –choices: Male, Female, Transman, Transwoman, Other
What can providers do to better support our LGBT Veterans? • Training & Education!– We’ve started, now we need to expand & execute. • Spring of 2016 LGBT Veteran Coordinators, SOGI, TMS • Educate ourselves as providers, seek out information, use culturally appropriate language • Transgender individuals should be identified with the pronoun that corresponds to the gender with which they identify.
What can providers do to better support our LGBT Veterans? • Affirming messages set up in clinic • Providers should be aware of possibility of existence of two families for LGBT persons and work within that • Utilize a nonjudgmental approach, and foster an empathetic environment. Don’t assume. Take time to ask the questions • If you make a mistake, apologize and move on.
References • National Health Statistics Reports—Sexual Orientation and Health Among U.S. Adults: National Health Interview Survey, 2013 • LGBTQI Terminology—UCLA LGBT Resource Center, https://www.google.com/?gws_rd=ssl#q=lgbt+terms • Sexual Behavior in the Human Male, Kinsey, A. 1953 • Map of States with Marriage Equality-- http://www.freedomtomarry.org/states/ • Wikipedia-- https://en.wikipedia.org/wiki/Sexual_orientation_and_gender_identity_in_the_United_States_military • Center for American Progress– https://www.americanprogress.org/issues/lgbt/news/2012/10/18/41907/infographic-gay-and-transgender-workers-lack-comprehensive-workplace-protections/ • Healthcare and End-of-Life Needs of Lesbian, Gay, Bisexual, and Transgender (LGBT) Older Adults: A Scoping Review. Stinchcombe, et al. Geriatrics. March 2017 • Southern Poverty Law Center, webpage. • American Civil Liberties Union--https://www.aclu.org/ • Human Rights Campaign--http://www.hrc.org/ • Understanding Health-Care Needs of Sexual and Gender Minority Veterans: How Targeted Research and Policy Can Improve Health. Mattocks, K.M., et al. • Centers for Disease Control and Prevention. Gay and Bisexual Men’s Health. For Your Health: Recommendations for a Healthier You. http://www.cdc.gov/msmhealth/for-your-health.htm • End-of-Life Care for an Aging LGBT Population • Needs, Experiences and Preferences of Sexual Minorities for End-of-Life Care and Palliative Care: A Systemic Review. Harding, R, PhD., Epiphaniou, E, PhD., & Chidgey-Clark, J, PhD. • Palliative Care with Lesbian, Gay, Bisexual, and Transgender Persons. Smolinksi, K. M. & Colon, Y. Oxford Textbook of Palliative Care Social Work. • Planning for End of Life, Brian de Vries talk from SWHPN conference, 2015, Philadelphia, PA