Virginia American Medical Directors Association
Virginia Beach, VA.
September 29, 2012
Pat Bach, PsyD, RN
Dan Bluestein, MD, CMD
1
Disclosures
We have no financial disclosures
2
Objectives
1.
Review historical context
2. Examine pragmatic considerations
3. Explore human dimensions
4. Identify strategies for improved care
3
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 nondiscriminatory
 Our aim today is to provide a framework & tools for so-
doing.
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How’d we get here?
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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
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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
7
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
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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
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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
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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”
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Momentum Gain in
st
21
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
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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.
13
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
14
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
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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
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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
17
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
18
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/
19
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%)
20
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.
21
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_upda
te_2011.html
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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
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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
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.
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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
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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
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GenSILENT
Silent
GEN
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Survey Conducted 8/13 - 9/28/2012
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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.
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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/
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VAMDA SURVEY RESULTS
N = 26
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Respondent Gender
35
Respondent Age
36
Respondent Profession
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Years in Practice
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Practice Type & Location
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Types of Training Re Care of LGBT Pts
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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 Transgenderrelated content in undergraduate medical education. JAMA. 2011
41
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
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Educational Resources Most Helpful to
Respondents in Care of LGBT Pts.
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Potential Factors Which May Impact
LTC Providers Caring for LGBT Pts.
Rank ordered 1= most imp, 6 = least imp
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Clinician Experiences w/LGBT Patients
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Provider Comfort Level w/LGBT Pts.
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Gender Neutral Forms
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Staff Training
re LGBT Pt Needs
Other Cultural
Competency training?
48
AMDA Policy
re LGBT Care
Effective 3/2012
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References, Resources & Suggestions
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National
Resource Center
on LGBT AGING
Excellent Resource
28 pages
Free download
http://www.lgbtagingcenter.org
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Suggestions
• Do presume you have LGBT residents
• Don’t presume you can distinguish them from others
• Treating “everyone the same” often equates to treating
them as heterosexual
– Discounts/ignores specific aspects of LGBT experience,
culture, health issues & needs
• Adapt intake forms
– Partner
– Gender preference
 Staff training on a consistent basis
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Intakes & Forms
 Ask all pts re sexual orientation & gender identities.
Prevents staff from asking only whom they “think” are
LGBT or singling out any one person.
 Create openings for LGBT pts to discuss family members of
choice with open-ended questions…
 “Who do you consider family?... Who in your life is
especially important?”
 If uncertain or appropriate language use, ask for
clarification.
 “Am I using the term or pronoun you prefer?”
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Confidentiality
 Provide privacy during discussions
 Include clearly written policy on all forms and read
aloud before beginning intake process.
 Explain how PHI (name, gender, health conditions,
other sensitive info) may be used by the facility and
who may/may not have access to this information.
 Reassure pt that sexual orientation & gender identity
will not be disclosed to anyone without his/her
consent.
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Policies & Procedures
 Ensure visitation policies include pt’s partner, domestic
partner, spouse, friend and that it is the same for same-sex
and opposite sex partners.
 “Family”
 “family of origin” (biological family members or those
related by marriage or kinship)
 “family of choice” (friends, partners, others determined
by patient).
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AMDA White Paper
“THE CARE OF LESBIAN, GAY, BISEXUAL, AND
TRANS-GENDER PERSONS IN THE LONG-TERM
CARE SETTING”
19 Recommendations in two specific areas:
 Clinical Practice & Policy
 Education
 Research
http://www.amda.com/governance/whitepapers/A12.cfm
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Clinical Practice & Policy
Recommendations
 Partner with other professional organizations (AMA, AAFP,
ACP) to foster non-discrimination based on sexual orientation or
gender identity.
 MCV work with Stu Maddux
 American Psychological Association
 Revise admission and procedure forms with congruent &
appropriate language respectful of LGBT family configuration
 lover, domestic partner, significant other & life partner, etc.,
as well as “spouse” & “marital status”
 Use “Family of Origin” as well as “Family of Choice”
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Clinical Practice & Policy
Recommendations
 Encourage assistance to LGBT elders with durable
power of attorney (POA) for health care, hospitalization
visitation authorization form, and other documents that
enfranchise “family of choice” members, whether a legally
recognized relationship or not.
 Include partner/ significant other during the initial
assessment and included in family meetings, treatment
planning, or other meetings relevant to the care of the
patient.
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Clinical Practice & Policy
Recommendations
 Non-restriction of visitation based on sexual
orientation or gender identity of visitors in accordance
with federal guidelines & ethical treatment of all patients.
 Create sexual orientation and gender identity as an
optional demographic information category on the
new patient intake form, as well as all other documents.
 Form a Diversity Committee to ensure access to
culturally competent LTC for all ethnic, cultural, and sexual
orientation/gender identity minority groups.
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Educational Recommendations
 Provide didactic and experiential training for all LTC
staff and providers regarding diversity issues relevant to
LGBT residents.
 Development of a Standardized Diversity Education
Program (SDEP) created through the Diversity Committee
(once established)
 Include the Standardized Diversity Education
Program in future Long Term Care Medicine annual
conference programs, as well as AMDA publications.
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Educational Recommendations
 Create an online repository/bibliography of relevant
books, articles, research studies and other resources
relevant to work with LGBT elders in LTC.
 Core Curriculum to incorporate salient material to
enhance care of LGBT elders in LTC.
 Conduct baseline assessment of AMDA members
regarding standards of practice, policies, and other specific
information relevant to the care of LGBT elders in the LTC
setting.
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Resources
 National Resource Center (NRC) on LGBT Aging
 Hilary Meyer
 http://lgbtagingcenter.org/
 NRC Cultural Competence Training (FREE)
 http://www.lgbtagingcenter.org/about/training.cfm
 Howard Brown Health Center HEALE Curriculum
 Health Education About LGBT Elders Program
 (in Chicago for RNs)
 http://www.howardbrown.org/hb_services.asp?id=2224
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Resources
 Gen Silent training
 http://stumaddux.com/gen_silent_TRAINING.html
 Inclusive Services for LGBT Older Adults: A Practical Guide
to Creating Welcoming Agencies (28 pgs)
 http://www.lgbtagingcenter.org/resources/pdfs/NRCInc
lusiveServicesGuide2012.pdf
 AMDA Policy: The Care of Lesbian, Gay, Bisexual and
Transgender Persons in the Long Term Care Setting
 http://www.amda.com/governance/whitepapers/A12.cf
m
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Resources
 Center for Medicare and Medicaid LGBT Older Adult
Training Video for ombudsmen
 Title TBD
 (50 mins); pending release
 Fenway Health: Boston LGBT Community Health Center
 Harvey Makadon, MD- Director
 http://www.fenwayhealth.org/site/PageServer
 Makadon, H. Ending LGBT Invisibility in health care:
The first step in ensuring equitable care. Cleveland
Clinic Journal of Medicine. 78(4), April, 2011.
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Please feel free to share these with us…
They’ll be included in the online PowerPoint!
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In Summary
 This is more of an issue
than we realize
 Clinicians have an ethical
obligation to provide good
care in an accepting
environment
Survey Key findings:
 Clinicians may
underestimate issues
pertinent to the equitable
care of LGBT elders
 Clinical training relative to
these issues is relatively
lacking across disciplines
 Staff training in this area is
of paramount importance
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Thank You …
For your time, attention, and
participation!
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