LGBTQ+ Adults: Unique Opportunities and Inclusive Approaches to Care

This webinar helps clinicians understand the unique healthcare needs of the LGBTQ+ community, primarily in relation to end-of-life care. Topics include social and cultural background and challenges, healthcare disparities, advanced care planning, and strategies for reaching the community and improving quality of care.

1. LGBTQ+ Adults: Unique Opportunities and Inclusive Approaches to Care

2. Satisfactory Completion Learners must complete an evaluation form to receive a certificate of completion. You must participate in the entire activity as partial credit is not available. If you are seeking continuing education credit for a specialty not listed below it is your responsibility to contact your licensing/certification board to determine course eligibility for your licensing/certification requirement. Physicians In support of improving patient care, this activity has been planned and implemented by Amedco LLC and VITAS ® Healthcare, Marketing Division. Amedco LLC is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC) to provide continuing education for the healthcare team. Credit Designation Statement – Amedco LLC designates this live activity for a maximum of 1 AMA PRA Category 1 Credit TM . Physicians should claim only the credit commensurate with the extent of their participation in the activity . CME Provider Information

3. VITAS Healthcare programs are provided CE credits for their Nurses/Social Workers and Nursing Home Administrators through:   VITAS Healthcare Corporation of Florida, Inc./CE Broker Number: 50-2135. Approved by: Florida Board of Nursing/Florida Board of Nursing Home Administrators/Florida Board of Clinical Social Workers, Marriage and Family Therapy & Mental Health Counseling.  VITAS Healthcare programs in Illinois are provided CE credit for their Nursing Home Administrators and Respiratory Therapists through: VITAS Healthcare Corporation of Illinois, Inc./8525 West 183 Street, Tinley Park, IL 60487/NHA CE Provider Number: 139000207/RT CE Provider Number: 195000028/Approved by the Illinois Division of Profession Regulation for: Licensed Nursing Home Administrators and Illinois Respiratory Care Practitioners. VITAS Healthcare, #1222, is approved to offer social work continuing education by the Association of Social Work Boards (ASWB) Approved Continuing Education (ACE) program. Organizations, not individual courses, are approved as ACE providers. State and provincial regulatory boards have the final authority to determine whether an individual course may be accepted for continuing education credit. VITAS Healthcare maintains responsibility for this course. ACE provider approval period: 06/06/2021–06/06/2024.  Social workers completing this course receive 1.0 continuing education credit(s). VITAS Healthcare Corporation of California, 310 Commerce, Suite 200, Irvine, CA 92602. Provider approved by the California Board of Registered Nursing, Provider Number 10517, expiring 01/31/2023. Exceptions to the above are as follows: AL: No NHAs, DE: No NHAs, DC: No NHAs, GA: No NHAs, KS: No NHAs, NJ: No NHAs, OH: No NHAs, PA: No NHAs, TX: No NHAs, VA: No NHAs, WI: No NHAs and Nurses are not required – RT only receive CE Credit in Illinois. CE Provider Information

4. To improve understanding of the unique healthcare needs the LGBTQ+ community faces, with focus on older adults To provide equitable, respectful, affirming, and clinically appropriate care to LGBTQ+ adults, regardless of their sexual orientation, gender identity, and gender expression To prevent suffering and establish trust in clinicians Goal

5. Improve understanding of the LGBTQ+ population’s needs Improve knowledge, confidence, and comfort with LGBTQ+ needs and terminology Understand the reasons behind healthcare challenges faced by the LGBTQ+ population, including: Delays in diagnosis and treatment Barriers in advance care planning Inadequate bereavement support Objectives

6. American Experience. Milestones in the American Gay Rights Movement. Available at: https://www.pbs.org/wgbh/americanexperience/features/stonewall-milestones-american-gay-rights-movement/ December 10, 1924 The Society for Human Rights founded in Chicago December 15, 1950 Senate rules homosexuals a “security risk” April 1952 American Psychiatric Association lists homosexuality as a sociopathic personality disorder December 15, 1973: Removed from list of mental illnesses April 27, 1953 Homosexuals banned from working for the federal government Ban lifted in 1977; repealed in 1995; explicitly repealed in 2017 LGBTQ+ History

7. American Experience. Milestones in the American Gay Rights Movement. Available at: https://www.pbs.org/wgbh/americanexperience/features/stonewall-milestones-american-gay-rights-movement/ June 28, 1969 The Stonewall Riots: The Stonewall Inn, New York City: “During the days of June 27-31, 1969, gay people ascended into the streets and openly resisted the harassment and criminal exploitation of their community…oppressions which they had long endured in silence. Rich-poor-drag-butch…gays stood together and fought in a mass act of resistance. Those days were the birth pangs of the gay liberation movement.” June 28, 1970 First gay pride marches in New York City (“Christopher Street Liberation Day”), Los Angeles, San Francisco, and Chicago LGBTQ+ History

8. American Experience. Milestones in the American Gay Rights Movement. Available at: https://www.pbs.org/wgbh/americanexperience/features/stonewall-milestones-american-gay-rights-movement/ June 5, 1981 First official reporting to the Centers for Disease Control and Prevention (CDC) of what would be known as the AIDS epidemic October 11, 1987 National March on Washington September 21, 1996 Defense of Marriage Act October 28, 2009 Matthew Shepard Act passed by Congress June 26, 2015 Federal legalization of same-sex marriage LGBTQ+ History

9. Curry, C. (2017). Global Citizen. 9 Battles The LGBTQ Community In The US Is Still Fighting. Available at: https://www.globalcitizen.org/fr/content/9-battles-the-lgbt-community-in-the-us-is-still-fi/Human Rights Campaign. Fatal Violence Against the Transgender and Gender Non-Conforming Community in 2022. Available at https://www.hrc.org/resources/fatal-violence-against-the-transgender-and-gender-non-conforming-community-in-2022 Parenting Gay conversion therapy Employment discrimination Housing discrimination Bathrooms, schools, and other public accommodations Unequal healthcare Criminal justice Acceptance Violence The LGBTQ+ Fight Continues

10. A few years ago, Nancy Kelly had a disturbing experience during an emergency visit to a small hospital outside Durham, North Carolina, where the 67-year-old from Swanville spends her winters. She had severely sprained her ankle getting off the plane and needed help. She had been married to Kate DeHaven since 2013, the year after Maine voters approved a referendum to allow same-sex marriage. But at the hospital, when she told the person doing the initial intake that her emergency contact person was her wife, she told Kelly not to disclose that information to others at the hospital. “She said, ‘You don’t want to tell people that here,’ as if I’d get inferior care because I was married to a woman,” Kelly said. “This kind of thing makes you feel very insecure about how much you can tell people. It also causes you to develop fear and that is a loss of dignity. It can become a constant daily reminder that you are not part of accepted society.” While Kelly and DeHaven, who is 76, have taken all legal steps available to them, they still worry that when they leave Maine they will be discriminated against because of their sexual orientation

11. Terms

12. Gender Identity Our internal experience and naming of our gender It can correspond to or differ from the sex we were assigned at birth Gender Expression The way we communicate our gender to others through such things as clothing, hairstyles, and mannerisms It also includes how individuals, communities, cultures, and society perceive, interact with, and try to shape our gender Understanding Gender

13. Sexual Orientation To whom a person is sexually attracted Some people are attracted to people of a particular gender; others are attracted to people of more than one gender One should not assume that sexual orientation and gender identity or expression are static Understanding Gender Sex Identity Attraction Expression

14. Farmer, D. et al. (2015). Hospice and Palliative Care for Older Lesbian, Gay, Bisexual and Transgender Adults: The Effect of History, Discrimination, Health Disparities and Legal Issues on Addressing Service Needs. Palliative Medicine and Hospice Care - Open Journal , 1(2), 36–43. https://doi.org/10.17140/pmhcoj-1-107 Approximately 3 million older adults in the US identify as members of the LGBTQ+ community 1.5 to 1.7 million Baby Boomers The first “out” generation One of the most understudied and underserved groups in health disparities research Most research centered around HIV/AIDS and STDs History of perceived and endured social stigma attached to being a sexual minority Reluctance to self-identify as LGBT –> absence of research The LGBTQ+ Older Adult

15. Farmer, D. (et al.) (2015). Hospice and Palliative Care for Older Lesbian, Gay, Bisexual and Transgender Adults: The Effect of History, Discrimination, Health Disparities and Legal Issues on Addressing Service Needs . Palliative Medicine and Hospice Care - Open Journal, 1(2), 36–43. https://doi.org/10.17140/pmhcoj-1-107 Older LGBTQ+ adults: Grew up in a less tolerant era Commonly concealed sexual identity/orientation Experienced invisibility Experienced denial of self Were compelled to conform for sake of public acceptance Came of age before the Stonewall Riots Face difficulty of reconciling this new reality with years of stigmatization and self-imposed isolation The LGBTQ+ Older Adult

16. Farmer, D. et al. (2015). Hospice and Palliative Care for Older Lesbian, Gay, Bisexual and Transgender Adults: The Effect of History, Discrimination, Health Disparities and Legal Issues on Addressing Service Needs. Palliative Medicine and Hospice Care - Open Journal , 1(2), 36–43. https://doi.org/10.17140/pmhcoj-1-107 Older LGBTQ+ people are at increased risk of being affected by: Interpersonal violence in intimate relationships Violence perpetrated by other LGBTQ+ people Hate crimes Vulnerability compounded by stress from social status as minority group Minority stress from the incongruity between personal needs and experiences and the structure and morality of the dominant society/culture Stress increased from marginalization and lack of rights Increased stress —> physical and mental health problems The LGBTQ+ Older Adult

17. Movement Advancement Project and Services and Advocacy for Gay, Lesbian, Bisexual and Transgender Elders (2010). Improving Lives of LGBTQ Adults. Available at: https:// www.lgbtmap.org /policy-and-issue-analysis/improving-the-lives-of- lgbt -older-adults 2x as likely to age as a single person 2x as likely to live alone 3-4x less likely to have children to support them More likely to be prematurely institutionalized 5x less likely to access aging services Due to a lifetime of social stigma and prejudice, which leads to fear of potentially unwelcoming or hostile healthcare professionals Compared to heterosexual counterparts, LGBTQ+ adults are: The LGBTQ+ Older Adult

18. Farmer, D. et al. (2015). Hospice and Palliative Care for Older Lesbian, Gay, Bisexual and Transgender Adults: The Effect of History, Discrimination, Health Disparities and Legal Issues on Addressing Service Needs. Palliative Medicine and Hospice Care - Open Journal , 1(2), 36–43. https://doi.org/10.17140/pmhcoj-1-107 LGBTQ+ individuals dealing with stigmatization and victimization daily develop: Competence Resilience Strength Coping skills The coming-out process Personal growth and self-awareness Increased coping ability Social Support

19. Farmer, D. et al. (2015). Hospice and Palliative Care for Older Lesbian, Gay, Bisexual and Transgender Adults: The Effect of History, Discrimination, Health Disparities and Legal Issues on Addressing Service Needs. Palliative Medicine and Hospice Care - Open Journal , 1(2), 36–43. https://doi.org/10.17140/pmhcoj-1-107 LGBTQ+ individuals often have smaller social support systems due to lower likelihood of being partnered and increased likelihood of living alone and childless Formalized, paid care less utilized More precarious economic situation, fewer family support options Social Support

20. Farmer, D. et al. (2015). Hospice and Palliative Care for Older Lesbian, Gay, Bisexual and Transgender Adults: The Effect of History, Discrimination, Health Disparities and Legal Issues on Addressing Service Needs. Palliative Medicine and Hospice Care - Open Journal , 1(2), 36–43. https://doi.org/10.17140/pmhcoj-1-107 Use of “families of choice,” not biologic Particularly among older LGBTQ+ persons Challenges Caregiving friends lack legal power/authority to make medical or end-of-life decisions Inability to perform sustained caregiving tasks over a long period of time Social Support

21. Dennis, J. (2014) 'We Made This Family': End-of-Life Care in the LGBT Community. HuffPost Healthy Living, The Blog. Available at: https://www.huffpost.com/entry/death-and-dying_b_4508724 When Eleanor went into a nursing home to receive the care she needed in her final days, she was open about who she was as a lesbian. “You still have time before you die to repent, change your ways and be saved,” a Certified Nursing Assistant (CNA) at the nursing home told her. Aversion to Healthcare

22. The National Gay and Lesbian Task Force. LGBT Older Adults in Long-Term Care Facilities Stories from the Field. Available at: http://www.lgbtagingcenter.org/resources/pdfs/NSCLC_LGBT_report.pdf When asked whether LGBT older adults could be open with facility staff, only 22% of LGBT respondents answered “yes.” A smaller share of respondents, who did not identify as LGBT older adults, responded “yes,” as the table shows. Of the 289 service providers who answered the survey, 247 felt that LGBT older adults were not safe coming out or were not sure that they should come out. LGBTQ+ Older Adults and Long-term Care (LTC) LGBT Older Adults Non-LGBT Older Adults Number Percent Number Percent No or not sure 218 78% 390 84% Yes 60 22% 76 16% All responses 278 100% 466 100%

23. The National Gay and Lesbian Task Force. LGBT Older Adults in Long-Term Care Facilities Stories from the Field. Available at: http://www.lgbtagingcenter.org/resources/pdfs/NSCLC_LGBT_report.pdf Fear of Being Out and Vulnerable A majority of respondents (578 of the 649 respondents or 89%) predicted that staff would discriminate against an LGBT elder who was out of the closet. A majority also thought that other residents would discriminate (526 or 81%) and, more specifically, that other residents would isolate an LGBT resident (500 or 77%). More than half also predicted that staff would abuse or neglect the person (346 or 53%).

24. The National Gay and Lesbian Task Force. LGBT Older Adults in Long-Term Care Facilities Stories from the Field. Available at: http://www.lgbtagingcenter.org/resources/pdfs/NSCLC_LGBT_report.pdf Stein, G., et al. (2020). Experiences of lesbian, gay, bisexual, and transgender patients and families in hospice and palliative care: perspectives of the palliative care team.  Journal of Palliative Medicin e, 23(6), 817-824. Fear of Being Out and Vulnerable Long-term Care Experiences Related to Resident’s Real or Perceived Sexual Orientation and/or Gender Identity Number of Instance Percent of All Instances Verbal or physical harassment from other residents 200 23% Refused admission or re-admission, attempted or abrupt discharge 169 20% Verbal or physical harassment from staff 116 14% Staff refused to accept medical power of attorney from resident’s spouse or partner 97 11% Restriction of visitors 93 11% Staff refused to refer to transgender resident by preferred name or pronoun 80 9% Staff refused to provide basic services or care 51 6% Staff denied medical treatment 47 6% Total 853 100% ICU or Emergency Department Type of discrimination not mutually exclusive No. Percent Treatment decisions or minimized 163 15.0 Treated disrespectfully 156 14.3 Denied or having limited access to patient in ICU or ED 93 8.5 Denied private time with patient 80 7.3 Visiting hours limited 54 5.0 Other 39 3.6 Treated abusively 12 1.1 Have not observed the mentioned actions 621 57.0

25. Chidiac, C., et al. (2021). Development and evaluation of an LGBT+ education programme for palliative care interdisciplinary teams.  Palliative Care and Social Practice,  15, 26323524211051388. Caring for LGBTQ+ Adults n % 145 100 Clinical Role Chaplain 2 1.38 Complementary therapist 1 0.69 Counsellor 23 15.86 Doctor 10 6.90 Healthcare assistant 21 14.48 Nurse 57 39.31 Occupational therapist 4 2.76 Others 15 10.34 Physiotherapist 5 3.45 Psychologist 2 1.38 Social worker 5 3.48 Pre-session Post-session n % n % 145 100.00 145 100.00 Knowledge of general LGBT+ issues and needs Not knowledgeable 48 33.10 1 0.69 Somewhat knowledgeable 84 57.93 73 50.34 Knowledgeable 13 8.79 71 48.97 Knowledge of LGBT+ issues and needs in palliative and end-of-life care Not knowledgeable 81 55.86 2 1.38 Somewhat knowledgeable 60 41.38 71 48.97 Knowledgeable 4 2.76 72 49.66 Confidence in providing palliative and end-of-life care for LGBT+ people Not confident 48 33.1 5 3.45 Somewhat confident 62 42.8 56 38.62 Confident 35 24.1 84 57.93

26. Farmer, D. et al. (2015). Hospice and Palliative Care for Older Lesbian, Gay, Bisexual and Transgender Adults: The Effect of History, Discrimination, Health Disparities and Legal Issues on Addressing Service Needs. Palliative Medicine and Hospice Care - Open Journal , 1(2), 36–43. https://doi.org/10.17140/pmhcoj-1-107 LGBTQ+ community has faced health disparities from economic insecurities and marginalization Less likely to have employer-based health insurance or be covered by their partner’s health insurance Unmet health needs, earlier onset of chronic conditions Lack of healthcare professional knowledge about LGBTQ+ populations Avoidance of healthcare system by LGBTQ+ people due to fears of discrimination and poor treatment Physician and medical student discomfort with caring for LGBTQ+ patients LGBTQ+ Healthcare Disparities

27. Krehely, J., (2009). How to Close the LGBT Health Disparities Gap. The Center for American Progress. Available at: https://www.americanprogress.org/article/how-to-close-the-lgbt-health-disparities-gap/ Healthcare and Health Insurance Access to health-care and health insurance Health Disparity #1 Heterosexual adults are more likely to have health insurance coverage. % of adults with health insurance Health Disparity #2 LGB adults are more likely to delay or not seek medical care. % of adults delaying or not seeking healthcare Health Disparity #3 LGB adults are more likely to delay or not get needed prescription medicine. % of adults delaying or not getting prescriptions Health Disparity #4 LGB adults are more likely to receive healthcare services in emergency rooms. % of youth receiving ER care 82% 77% 17% 29% 13% 22% 18% 24% Heterosexual LGB Transgender 57%

28. Farmer, D. et al. (2015). Hospice and Palliative Care for Older Lesbian, Gay, Bisexual and Transgender Adults: The Effect of History, Discrimination, Health Disparities and Legal Issues on Addressing Service Needs. Palliative Medicine and Hospice Care - Open Journal , 1(2), 36–43. https://doi.org/10.17140/pmhcoj-1-107 Stress of “living as an LGBTQ+ person in a homophobic society” Leading marginalized lives Stress of hiding one’s sexual orientation Enduring verbal, emotional, or physical abuse from family members and from larger society, including healthcare Care delivered without touching the patient or with excessive precautions Blame for health status Roughness and abuse LGBTQ+ Healthcare Disparities

29. Farmer, D. et al. (2015). Hospice and Palliative Care for Older Lesbian, Gay, Bisexual and Transgender Adults: The Effect of History, Discrimination, Health Disparities and Legal Issues on Addressing Service Needs. Palliative Medicine and Hospice Care - Open Journal , 1(2), 36–43. https://doi.org/10.17140/pmhcoj-1-107 Movement Advancement Project and National Center for Transgender Equality (2018). Religious refusals in health care: a prescription for disaster. Available at: https://www.lgbtmap.org/file/Healthcare-Religious-Exemptions.pdf Discrimination and Barriers to Care Refusing to provide needed treatment jeopardizes the health and wellbeing of millions of people LGBTQ+ Healthcare Disparities Refusing to care for women or LGBT people. Providers can refuse to treat women if the treatment, such as medically-necessary hysterectomies, violates their religious beliefs. In many states, providers can turn away LGBT people if treatment violates their beliefs. Mississippi allows providers to refuse any kind of care to transgender people, whether or not that medical care is transition-related Refusing to care for sexual health, including HIV treatment or testing. Providers can refuse to test for or treat STIs or prescribe medications like the HIV-prevention drug PrEP, if doing so violates their religious beliefs about, for example, unmarried or LGBT people’s sexual health Refusing to care for children of LGBT parents. In Michigan, a pediatrician was able to legally turn away an infant for a newborn checkup because the baby had two mothers.

30. Disability Poor mental health Smoking Excessive drinking HIV infection Suicide attempts Violence Homelessness Depression Generalized anxiety disorder Panic attacks Social isolation Reduced access to preventive healthcare LGBTQ+ Health LGBTQ+ populations are at higher risk of:

31. Farmer, D. et al. (2015). Hospice and Palliative Care for Older Lesbian, Gay, Bisexual and Transgender Adults: The Effect of History, Discrimination, Health Disparities and Legal Issues on Addressing Service Needs. Palliative Medicine and Hospice Care - Open Journal , 1(2), 36–43. https://doi.org/10.17140/pmhcoj-1-107 Better health outcomes associated with: Living with a partner Having higher income Less lifetime victimization Having good physical and mental functioning Having higher self-esteem Being a parent Having a favorable attitude towards one’s own sexuality Despite this, evidence shows that older same-sex couples do not gain the same health benefits to the extent that heterosexual couples do LGBTQ+ Health

32. Healthline. Depression in the Face of a Terminal Illness and Death. Available at https://www.healthline.com/health/depression/terminal-illness Depression Affects about 26% of adults Affects 77% of terminally ill Underdiagnosed in people with a terminal illness Increases as a disease advances and causes more painful or uncomfortable symptoms. The more a person’s body changes, the less control they feel over their lives. Mental Health Disbelief Panic Anxiety Anger Bitterness Denial Vulnerability Sadness Frustration Loneliness

33. Fredriksen-Goldsen, K., (2011). The aging and health report: Disparities and Resilience among Lesbian, Gay, Bisexual, and Transgender Older Adults  Seattle, WA: Institute for Multigenerational Health. Available at: https://lavenderseniors.org/wp-content/uploads/2016/05/Caring-Aging-with-Pride.pdf Coming out, internalized homophobia, and stigmatization lead to higher risk for depression, suicide, risky behavior, and substance use Loneliness and social isolation were significant contributors about 50% Mental Health Issues Suicide risk higher 39% in The Aging Health Report cohort contemplated suicide Highest in transgender older adults at 71% Race/ethnicity differences Highest rates of depression, stress in Hispanic and Native American Higher rates of neglect in Hispanic and African Americans

34. Krehely, J., (2009). How to Close the LGBT Health Disparities Gap. The Center for American Progress. Available at: https://www.americanprogress.org/article/how-to-close-the-lgbt-health-disparities-gap/ Mental Health Issues Health Disparity #11 LGB adults are more likely to experience psychological distress % of adults experiencing psychological distress in past year Health Disparity #12 LGB adults are more likely to need medication for emotional health issues. % of adults needing medication for mental health Health Disparity #13 Transgender adults are much more likely to have suicide ideation. % of adults reporting suicide ideation Health Disparity #14 LGB youth are much more likely to attempt suicide. % of youth reporting suicide attempts 9% 20% 10% 22% 2% 5% 50% 10% 35% Impact of societal biases on mental health and well-being Heterosexual LGB Transgender

35. Fredriksen-Goldsen, K.,. (2011). The Aging and Health Report: Disparities and Resilience among Lesbian, Gay, Bisexual, and Transgender Older Adults. Available at: https://www.lgbtagingcenter.org/resources/pdfs/LGBT%20Aging%20and%20Health%20Report_final.pdf The following populations have higher rates of the listed conditions: LGBT African Americans – obesity, HTN, HIV LGBT Hispanics – HIV, asthma, DM, visual impairment Ethnicity and Sexual Orientation Specific medical conditions: Lesbian – breast, ovarian, and endometrial cancer Gay – HD, anal cancer, and NHL Transgender – DM, CV disease, liver disease, and breast, ovarian, prostate, cervical cancer

36. Krehely, J., (2009). How to Close the LGBT Health Disparities Gap. The Center for American Progress. Available at: https://www.americanprogress.org/article/how-to-close-the-lgbt-health-disparities-gap/ Physical Health Issues Impact of societal biases on physical health and well-being Health Disparity #5 Heterosexual adults are more likely to report having excellent or very good overall health. % of adults experiencing excellent or very good health Health Disparity #6 Lesbian and bisexual women are less likely to receive mammograms. % of women receiving a mammogram in past 2 years Health Disparity #8 LGB youth are more likely to be threatened or injured with a weapon in school. % of youth threatened or injured with a weapon Health Disparity #9 LGB youth are more likely to be in physical fights that require medical treatment. % of youth in a physical fight requiring medical treatment 83% 77% 62% 57% 5% 19% 4% 13% 67% Health Disparity #7 LGB adults are more likely to have cancer. % of adults ever diagnosed with cancer 6% 9% Health Disparity #10 LGB youth are more likely to be overweight. % of youth who are overweight 6% 12% Heterosexual LGB Transgender

37. Lawton, A. (2019). Fast facts and concepts #275 end-of-life and advance care planning considerations for lesbian, gay, bisexual, and transgender patients. Palliative Care Network of Wisconsin. Available at: https://www.mypcnow.org/wp-content/uploads/2019/03/FF-275-LGBT.-3rd-Ed.pdf Advance care planning Partner and family involvement Discussion of sexual orientation LGBTQ+ and End-of-Life Care

38. Seelman, A. (2019). Motivations for advance care and end-of-life planning among lesbian, gay, and bisexual older adults.  Qualitative Social Work ,  18 (6), 1002-1016. Sense of agency Learning from others Reducing conflict Age Race Relationship Status Degree of being “out” Advance Directive? 65 White/Caucasian Partnered Everyone Yes 65 African American/Black Single Most people in social network No 67 White/Caucasian Single Everyone No 70 White/Caucasian Partnered Most people in social network Yes 72 African American/Black Partnered Most people in social network Yes 74 White/Caucasian Single A few close friends/family No 74 White/Caucasian Partnered Most people in social network Yes 75 African American/Black Partnered A few close friends/family No 77 White/Caucasian Single Most people in social network Yes LGBTQ+ Advance Care Planning

39. Hughes, M., et al. (2015). Lesbian, gay, bisexual and transgender people's attitudes to end‐of‐life decision‐making and advance care planning.  Australasian Journal on Ageing , 34, 39-43. Stein, G. et al. (2001). Attitudes on end-of-life care and advance care planning in the lesbian and gay community. Journal of Palliative Medici ne, 4(2), 173-190. Hughes et al. 2015 18% Healthcare proxy 12% Living will Reasons cited for not completing Not necessary now Not aware of document Not aware how to complete it LGBT Advance Care Planning Stein et al. 2001 42% Healthcare proxy 38% Living will Much higher than general population as sample connected to LGBTQ+ health and social services

40. Hughes, M., et al. (2015). Lesbian, gay, bisexual and transgender people's attitudes to end‐of‐life decision‐making and advance care planning.  Australasian Journal on Ageing , 34, 39-43. Stein, G. et al. (2001). Attitudes on end-of-life care and advance care planning in the lesbian and gay community . Journal of Palliative Medicine , 4(2), 173-190. LGBT Power of Attorney Designations 45% partner Hughes et al. 2015 25% biologic relatives 17% friends 7% general practitioners 6% other Stein et al. 2001 43% partners 31% relatives 19% friends

41. Singer, P., et al. (1999). Quality end-of-life care: patients' perspectives.  JAMA ,  281 (2), 163-168. Pain and symptom control Avoid inappropriate prolongation of the dying process Achieve a sense of control Relieve burdens on family Strengthen relationships with loved ones What Do Patients With Serious Illnesses Want?

42. Consider hospice if a patient meets 2 or more: Dependent in 2-3 of 6 ADLs SOB or fatigue at rest/minimal exertion Multiple ED visits or hospitalizations 10% weight loss in 6 months Recurrent falls with injury Decreased tolerance in physical activity General Hospice Eligibility Guidelines

43. *Per Medicare guidelines, these 2 levels of care are provided on a temporary basis until the symptom(s) is optimally managed. **Usually not offered more than monthly Four Levels of Care Hospice Support Intensive Comfort Care ® (ICC)* Higher level of care Acute symptom management Patient’s bedside/preferred care setting VITAS RN/LPN/LVN/aide Temporary shifts of 8-24 hours until symptoms stabilize Prevents ED visits/hospital readmissions General Inpatient (GIP) Care* Higher level of care (GIP/VITAS IPU) Acute symptoms can no longer be managed in patient’s preferred setting VITAS RN/MD/psychosocial team Temporary until symptoms stabilize Prevents ED visits/hospital readmissions Routine Care Most common level of hospice care More robust and comprehensive compared to home health care services Patient’s preferred setting Proactive clinical approach helps to prevent ED visits/hospital readmissions Respite Care** Provides temporary break (caregiver burnout, travel, work, etc.) Up to 5 days of 24-hour patient care Medicare-certified hospital, hospice facility, or long-term care facility

44. Hospice aide Based on individualized plan of care; bathing, dressing, feeding, in-home support to ensure a safe environment, dignity, etc. Registered nurse (RN) Proactive symptom management, wound care, medication reconciliation, disease-specific education (i.e., disease process, aspiration precautions, feeding techniques, wound prevention) Hospice Support Physician Collaborative support with PCP and/or specialist, GOC conversations with caregiver relating to disease process and progression Therapy services Physical therapy, occupational therapy, speech therapy for comfort, safety and dietary modifications, education. Nutritional counseling for education regarding diet modification, aspiration precautions, feeding techniques

45. *Not available with all hospice providers Hospice Support Respiratory therapist Education on equipment use, such as O 2 and pulmonary hygiene Volunteers To relieve caregiver for a few hours wherever patient calls home; emotional support, short-term companionship Chaplain Nondenominational support, including spiritual and bereavement support for family, death attendance* Social worker Advance care planning (ACP), grief support, family meeting, support, community resources, placement, funeral planning, emotional need assessment, counseling, death attendance* Integrative services Massage, music, pet visits* Hospice trainings Patient/family/caregiver educational resources on ACP, medication administration, psychosocial needs, disease progression by body system, and the dying process to ensure they remain knowledgeable/remain in preferred care setting

46. Provision of LGBTQ+ friendly forms Acknowledgement of multiple family types and relationships Provision of appropriate questions about sexual orientation and gender identity Development and display of non-discriminatory policies Use of inclusive brochures and artwork Having diverse staff including designated LGBT liaison Providing staff training on sensitivity to LGBT cultures, issues, and concerns Availability of educational materials on pertinent topics Meeting the Needs A welcoming, inclusive, culturally sensitive environment is essential

47. A lack of knowledge among healthcare professionals creates access barriers An affirming or welcoming environment for the LGBTQ+ patient and family is key Acknowledgement and acceptance help meet patient and family needs Meeting the Needs

48. Farmer, D. et al. (2015). Hospice and Palliative Care for Older Lesbian, Gay, Bisexual and Transgender Adults: The Effect of History, Discrimination, Health Disparities and Legal Issues on Addressing Service Needs. Palliative Medicine and Hospice Care - Open Journal , 1(2), 36–43. https://doi.org/10.17140/pmhcoj-1-107 Healthcare professionals and staff must: Understand the cultural context of patients’ lives Take detailed, non-judgmental patient histories Be self-reflective about their own attitudes Avoid heterosexist/homophobic elements Allow for self-disclosure Accept gender assignments preferred by transgendered persons Meeting the Needs

49. Farmer, D. et al. (2015). Hospice and Palliative Care for Older Lesbian, Gay, Bisexual and Transgender Adults: The Effect of History, Discrimination, Health Disparities and Legal Issues on Addressing Service Needs . Palliative Medicine and Hospice Care - Open Journal , 1(2), 36–43. https://doi.org/10.17140/pmhcoj-1-107 Staff should be: Sensitive to stigmatization and its history Knowledgeable about barriers to care that persist Ready and willing to rectify lack of knowledge of LGBTQ+ populations The role and importance of self-defined family, legal issues, advance directives, employee benefits, and long-term care concerns Meeting the Needs

50. To be fully seen by somebody, then, and be loved anyhow – this is a human offering that can border on miraculous. – Elizabeth Gilbert, Author

51. Additional Hospice Resources The VITAS mobile app includes helpful tools and information: Interactive Palliative Performance Scale (PPS) Body-Mass Index (BMI) calculator Opioid converter Disease-specific hospice eligibility guidelines Hospice care discussion guides We look forward to having you attend some of our future webinars! Scan now to download the VITAS app. 53

52. Appendix

53. American Experience. Milestones in the American Gay Rights Movement. Available at: https://www.pbs.org/wgbh/americanexperience/ features/stonewall-milestones-american-gay-rights-movement/ Chidiac, C., et al. (2021). Development and evaluation of an LGBT+ education programme for palliative care interdisciplinary teams.  Palliative Care and Social Practice ,  15 , 26323524211051388. Curry, C. (2017). Global Citizen. 9 Battles The LGBTQ Community In The US Is Still Fighting. Available at: https://www.globalcitizen.org/fr/ content/9-battles-the-lgbt-community-in-the-us-is-still-fi/ Dennis, J. (2014) 'We Made This Family': End-of-Life Care in the LGBT Community. HuffPost Healthy Living, The Blog. Available at: https://www.huffpost.com/entry/death-and-dying_b_4508724 Farmer, D. et al. (2015). Hospice and Palliative Care for Older Lesbian, Gay, Bisexual and Transgender Adults: The Effect of History, Discrimination, Health Disparities and Legal Issues on Addressing Service Needs. Palliative Medicine and Hospice Care – Open Journal , 1(2), 36–43. Fredriksen-Goldsen, K., (2011). The aging and health report: Disparities and Resilience among Lesbian, Gay, Bisexual, and Transgender Older Adults. Seattle, WA: Institute for Multigenerational Health. Available at: h ttps://lavenderseniors.org/ wp-content/uploads/2016/05/Caring-Aging-with-Pride.pdf References

54. Harding, R., et al. (2012). Needs, experiences, and preferences of sexual minorities for end-of-life care and palliative care: a systematic review.  Journal of Palliative Medicine ,  15 (5), 602-611. Healthline. Depression in the Face of a Terminal Illness and Death. Available at : https://www.healthline.com/health/ depression/terminal-illness Hughes, M., et al. (2015). Lesbian, gay, bisexual and transgender people's attitudes to end‐of‐life decision‐making and advance care planning.  Australasian Journal on Ageing , 34, 39-43. Human Rights Campaign. Fatal Violence Against the Transgender and Gender Non-Conforming Community in 2022. Available at https://www.hrc.org/resources/fatal-violence-against-the-transgender-and-gender-non-conforming-community- in-2022 Krehely, J., (2009). How to Close the LGBT Health Disparities Gap. The Center for American Progress. Available at://www.americanprogress.org/article/how-to-close-the-lgbt-health-disparities-gap Lawton, A. (2019). Fast facts and concepts #275 end-of-life and advance care planning considerations for lesbian, gay, bisexual, and transgender patients. Palliative Care Network of Wisconsin. Available at: https://www.mypcnow.org/wp content/uploads/2019/03/FF-275-LGBT.-3rd-Ed.pdf Movement Advancement Project and National Center for Transgender Equality (2018). Religious refusals in health care: a prescription for disaster. Available at: https://www.lgbtmap.org/file/Healthcare-Religious-Exemptions.pdf References

55. Movement Advancement Project and Services and Advocacy for Gay, Lesbian, Bisexual and Transgender Elders.  (2010) Improving Lives of LGBTQ Adults. Available at: https://www.lgbtmap.org/policy-and-issue-analysis/improving- the-lives-of-lgbt-older-adults The National Gay and Lesbian Task Force. LGBT Older Adults in Long-Term Care Facilities Stories from the Field. Available at: http://www.lgbtagingcenter.org/resources/pdfs/NSCLC_LGBT_report.pdf Seelman, A. et al. (2019). Motivations for advance care and end-of-life planning among lesbian, gay, and bisexual older adults.  Qualitative Social Work ,  18 (6), 1002-1016. Singer, P., et al. (1999). Quality end-of-life care: patients' perspectives.  JAMA ,  281 (2), 163-168 Stein, G., et al. (2020). Experiences of lesbian, gay, bisexual, and transgender patients and families in hospice and palliative care: perspectives of the palliative care team.  Journal of Palliative Medicine ,  23 (6), 817-824. Stein, G., et al. (2001). Attitudes on end-of-life care and advance care planning in the lesbian and gay community. Journal of Palliative Medicine, 4(2), 173-190. References

56. RS 59 y/o male with stage 4 pancreatic cancer and increasing pain Living at home with partner of over 20 years who is POA Husband persistently questioned about marital status by clinicians, creating undue burden No children, no family involvement Oncology recommended; hospice but no referral generated Patient contacted local LGBTQ+ resource center who referred patient to LGBTQ+ friendly private duty who then advised patient to contact VITAS Patient received hospice services for 37 days, including 4 days of continuous care during final stages Case Study

57. CG Chapter member of nationwide LGBTQ+ senior advocacy group, aware of VITAS LGBTQ+ advocacy/support Patient living alone at home; however, moved to ALF due to limited ability to provide self-care 70 y/o male with colon cancer currently on chemo, history CHF, CAD, and prior MI presents to ER for chest pain, CT reveals liver metastases Patient A&O x3, signed own consents and enrolled with VITAS upon discharge to ALF No spouse/partner, no children. Sister who lives out of the area is POA Patient received hospice services for 47 days, including 4 days of continuous care during final stages Case Study

58. Pathologized, “sociopathic personality disturbance” Marginalized, ostracized, sinful, and immoral, “Won’t marry a gay person;” “Can’t adopt” Heterocentrism homophobic environment Legally sanctioned discrimination Why? Health Disparities Healthcare professional refusal care for LGBTQ+ patients State laws allowing discrimination - Mississippi Deliver healthcare consistent with religious and moral beliefs Loneliness, depression, and suicide Shrinking social networks and housing discrimination Stigma Discrimination Treatment Refusal Health Disparities

59. Farmer, D. et al. (2015). Hospice and Palliative Care for Older Lesbian, Gay, Bisexual and Transgender Adults: The Effect of History, Discrimination, Health Disparities and Legal Issues on Addressing Service Needs. Palliative Medicine and Hospice Care - Open Journal , 1(2), 36–43. https:// doi.org /10.17140/pmhcoj-1-107 LGBTQ+ persons are part of every community Many live in poverty and had little to no health insurance prior to the Affordable Care Act of 2010 More likely to experience economic insecurity Background

60. Farmer, D. et al. (2015). Hospice and Palliative Care for Older Lesbian, Gay, Bisexual and Transgender Adults: The Effect of History, Discrimination, Health Disparities and Legal Issues on Addressing Service Needs. Palliative Medicine and Hospice Care - Open Journal , 1(2), 36–43. https:// doi.org /10.17140/pmhcoj-1-107 Increased likelihood of financial and health problems in later life Lifetime of discrimination Less likelihood of having employer-sponsored pensions and health insurance No coverage under a partner’s health plan Having to pay more for healthcare even with insurance Denial of most survivor and death benefits Background

61. Farmer, D. et al. (2015). Hospice and Palliative Care for Older Lesbian, Gay, Bisexual and Transgender Adults: The Effect of History, Discrimination, Health Disparities and Legal Issues on Addressing Service Needs. Palliative Medicine and Hospice Care - Open Journal , 1(2), 36–43. https:// doi.org /10.17140/pmhcoj-1-107 Older LGBTQ+ persons: Are 2x as likely as heterosexuals to live alone Are 4x more likely to be childless Face institutionalized discrimination via unequal access to benefits and services, e.g., from agencies servicing the elderly Background

62. Minority stress Negative mental and physical health outcomes associated with living within the societal prejudice of a heterosexist society Invisibility of sexual orientation Lack of sensitivity and inadvertent insensitivity in addition to overt discrimination Internalized prejudice, internal struggle Background

63. Natural Love of the same sex LTC Needs Advanced care planning/ advanced directives Psychosocial needs Socioeconomic needs Universal fear of hospice Aversion to healthcare Family unit Cultural inclusion Culture of understanding (empathy) Topics

64. Transgender The LGBTQ+ Veteran The LGBTQ+ Caregiver Exclusion Topics

65. Harding, R., et al. (2012). Needs, experiences, and preferences of sexual minorities for end-of-life care and palliative care: a systematic review.  Journal of Palliative Medicine ,  15 (5), 602-611. Partner as part of decision- making and treatment planning process Mistrust erodes the patient- physician relationship Heterosexism bias leads to feelings of lack of support Less likely to share emotions and fears Receive emotional support outside healthcare team Goals-of-Care Discussions

66. Advance care planning (ACP) Isolation Emotional support Reconciliation with loved ones Mitigate family dynamic Caregiver burnout Grief Bereavement Closure Hospice Support