Invisible No More: LGBT Patients in LTC

1. Invisible No More: LGBT Patients in LTC Virginia American Medical Directors Association Virginia Beach, VA. September 29, 2012 Pat Bach, PsyD, RN Dan Bluestein, MD, CMD

2. Disclosures We have no financial disclosures

3. Objectives • Review historical context • Examine pragmatic considerations • Explore human dimensions • Identify strategies for improved care

4. Our Philosophy • Range of views on issue • Our job not to change personal beliefs • However, we do work from the premise that our professional attitudes & behaviors must be non-discriminatory • Our aim today is to provide a framework & tools for so-doing.

5. How’d we get here?

6. Early 1980s • Seeing many young men come in for “virus” • Predominantly Gay • Provider perceptions (myself included) • Distraction from other patients • Incurable, self-inflicted illness • High risk behavior

7. Changing Perspectives over the Years • High risk behaviors & spread of infection among heterosexuals as well • Pts seeking testing not necessarily representative of Gay community • Realization that sexual orientation & gender identity are endogenous rather than choices

8. Fast-forward to the Present: Dr. C • Retired professor of history at nearby university. • Good son; good uncle • Caregiver for parents • Supported niece's college education • “Bachelor” when moved into our CCRC • Subsequently revealed lifelong same-sex partner • Profound, near suicidal depression when cut off from partner at latter’s death by his biologic family • Prompted awareness & change in my views. • Admirable individual, did not deserve to suffer based on choice of partner • Another recent example-Sally Ride

9. AMDA 2011 • Our session on sexuality in LTC • Included segment on LGBT elders • 10 min “Gen Silent” film clip (Producer Stu Maddox) • Powerful impact on audience • Subsequent discussions w AMDA leadership on this & related issues => asked to develop White Paper by House of Delegates

10. Crystallized My Thinking • “No more appropriate to discriminate based on sexual orientation/gender identify than to do so based on race, sex, religion…” • Viewed in context of living memory of where discrimination can lead • Holocausts • Civil rights movement

11. Historical Background • 1st ½ of 20th century: total ostracism • Latter 20th century: slow attitudinal shift • Decriminalization of homosexual activity • Removal of homosexuality as mental illness • Self-advocacy-”Stonewall”

12. Momentum Gain in 21st Century • Elimination of LGBT disparities objective of “Healthy People 2020” • IOM monographs • Repeal of “don’t-ask; don’t tell” • Legalization of same-sex marriage in some states • Non-discrimination statements & policies by various professional organizations • AMDA 2012

13. 2012 • “inhospitable healthcare environments characterized by healthcare professionals and staff that are not accepting of, or trained to work with, LGBT elders.” • barriers in LTC • hostility of staff, other patients, • exclusion of “family of choice” caregivers. • stigma, negative stereotypes persist.

14. From AMDA White Paper: A Closer Look • Prevalence issues • Clinical and quality of life concerns • Evidence of current disparities & barriers to care • Regulatory mandates • Ethical imperatives

15. Prevalence • Assume 8% of US pop’n self-identifies as Lesbian/Gay • Conservative • No data on bisexual/transgender • 2010: 40x106 > 65 => ~ 3 million L/G • 2030: 70x106 > 65 => ~ 5.6x106 • 2050: 80x106 > 65 => ~ 6.4x106

16. In LTC ….. • Census of 1.5 million @ 8% = 120,000+ • Most reside in facilities that are not geared specifically for LGBT clients. • 100 bed facility: 8-10 LGBT residents

17. Psychosocial Considerations • Prior stigmatization by health care providers • Family issues • Cultural isolation-nondisclosure • Impacts health • Impacts self-worth • Obscures significant clinical issues • Magnified for disadvantaged minorities

18. Clinical Issues • HIV • Infection issues • Accelerated aging • cognitive impairment • osteoporosis • nephropathy • malignancies • HIV drug side effects and interactions • Mental health needs • Smoking & related comorbidities • Hormonal effects-transgendered individuals

19. Study: Improving the Lives of LGBT Older Adults Study re experiences of older adults living in LTC. N = 769 total 284 self ID’d LGBT 485 families, friends, of LGBT pts. Documents challenges as reported by LGBT Elders in LTC. March, 2010. http://www.lgbtlongtermcare.org/

20. Experiences:“Stories from the Field” • 328 respondents (124 LGBT), reported 853 instances of mistreatment • verbal or physical harassment from other residents (23%) • refused admission, readmission, or attempted abrupt discharge (20%) • verbal or physical harassment from staff (14%) • refusal of partner’s medical POA (11%) • restriction of visitors (11%) • staff refusal to refer to transgender patient by preferred name or pronoun, (6%) • refusal of basic services (6%) • denial of medical care (6%)

21. Regulatory • Nursing Home Reform Act • right to be treated with “dignity” and “respect,” • “to be free from physical or mental abuse” or “involuntary seclusion,” • Discrimination against LGBT older adults would violate NHRA standards, as would restriction of visitors who are non-biologic family of choice. • CMS rule protect patients’ right to choose visitors during a hospital stay, including same-sex domestic partners.

22. Regulatory, Continued • CMS has also issued guidance to states making clear that same‐sex partners may be afforded treatment comparable to other spouses when it comes to receiving long‐term care • Federal law protects assets, such as a couple’s home, in the event that a married individual must receive nursing home care through Medicaid. • In June 2011, CMS clarified that states have the flexibility to extend this protection to same‐sex partners. • http://www.hhs.gov/secretary/about/lgbthealth_update_2011.html

23. Regulatory, Concluded • CMS is considering revision of NH regulations • Soliciting public comment • Consumer Voice for quality long-term care • Aug 2, 2012 position paper from consortium of LGBT advocacy groups • Explicit, specific non discrimination language • Broadened definition of family • Visitation, shared rooms • Removal of visiting hour restrictions

24. In Virginia …. • Same-gender sexual activity is legal • Based on court decisions in 2003 & 2005 • 2006 ratification of VA constitutional amendment defining marriage as the union of a man and a woman • 2012 poll 41% favor same sex marriage; 65% favor legal recognition of same-sex couples • VA law does not address discrimination based on gender identity or sexual orientation • VA hate crime laws address violence based on race, religious conviction, national origin, but not on sexual orientation or gender identity

25. Ethical Aspects • Beneficence & Non-Maleficence • Non-discrimination, acceptance, and non-restrictive visitation policies • Justice-duty to treat individuals fairly and without discrimination, • paramount ethical principle surrounding this issue.

26. AMDA Precepts • AMDA has long been an advocate of equity and quality in care of vulnerable seniors, as evidenced in its own ethics, mission, and values statements. • Advocacy for LGBT LTC residents is also consistent with AMDA medical director functions 1, 3, 7, 8, and 9. • AMDA LGBT White Paper 2012

28. About “Gen Silent” Stu Maddux: documentary film maker with media background • One year covering 7 LGBT older adults in Boston area • Focuses on issues, needs, and obstacles experienced by these folks & how they coped • Snapshot of life for LGBT elders, particularly those needing LTC

29. GEN SILENT Gen Silent

30. Your Thoughts & Reflections

31. VAMDA Survey: LGBT Elders in LTC Survey Conducted 8/13 - 9/28/2012

32. Survey Goals • Customize this talk to the educational needs of VAMDA members and other conference participants • Create an opportunity for dialogue • Identify the attitudes, experiences, perceptions and expectations of VAMDA members.

33. Study: Improving the Lives of LGBT Older Adults Study re experiences of older adults living in LTC. N = 769 total 284 self ID’d LGBT 485 families, friends, of LGBT pts. Documents challenges as reported by LGBT Elders in LTC. March, 2010. http://www.lgbtlongtermcare.org/

34. VAMDA SURVEY RESULTS N = 26

35. Respondent Gender

36. Respondent Age

37. Respondent Profession

38. Years in Practice

39. Practice Type & Location

40. Types of Training Re Care of LGBT Pts

41. Current Status re LGBT-related Healthcare Education • Nursing Education: “…nursing literature is lacking in content addressing LGBT health…” • Lim & Bernstein. Nurs Educ Perspect 2012 • Brennan et al. J Prof Nurs. 2012 • Medical Education: • Median 5 curricular hours in med school • Extent of coverage varies; students taught to ask if pts “have sex with men, women, or both” • Perceived room for significant improvement • Obedin-Maliver, et al. Lesbian, Gay, Bisexual and Transgender-related content in undergraduate medical education.JAMA. 2011

42. Experiences:“Stories from the Field” • 328 respondents (124 LGBT), reported 853 instances of mistreatment. • verbal or physical harassment from other residents & staff • refused admission, readmission, or attempted abrupt discharge • refusal of partner’s medical POA, denial of medical care, and refusal of basic services • staff refusal to refer to transgender patient by preferred name or pronoun & restriction of visitors • Provides empirical data suggesting adverse conditions for LGBT elders in some long term care settings

43. Educational Resources Most Helpful to Respondents in Care of LGBT Pts.

44. Potential Factors Which May Impact LTC Providers Caring for LGBT Pts. Rank ordered 1= most imp, 6 = least imp

45. Clinician Experiences w/LGBT Patients

46. Provider Comfort Level w/LGBT Pts.

47. Gender Neutral Forms

48. Staff Training re LGBT Pt Needs Other Cultural Competency training?

49. AMDA Policy re LGBT Care Effective 3/2012

50. Supporting Change Toward LGBT Inclusive Long Term Care References, Resources & Suggestions