The LGBT Community & Culturally Proficient Palliative Care: Unique Perspectives, Emerging Needs

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1 The LGBT Community & Culturally Proficient Palliative Care: Unique Perspectives, Emerging Needs GARY L. STEIN, JD, MSW Associate Professor Wurzweiler School of Social Work Yeshiva University New York, NY

2 TO PONDER Researchers: When collecting demographic information, do you inquire about sexual orientation? Administrators: Does your program have staff development to prepare for working with LGBT communities? Policymakers: When recommending policies / programs, do you consider the needs of LGBT communities? Clinicians: Do you think some colleagues would be surprised to have or be uncomfortable with LGBT patients?

3 LGBT Elders Today 1 to 3 million Americans > 65 LGBT 3%-8% of population By to 6 million Community will be served by mainstream elder services, hospice & palliative care

4 LGBT Elders Today 90% no children 80% >64 without partners 2/3 live alone Less likely to have caregiver if ill

5 EVENTS IMPACTING THE LGBT COMMUNITY Thompson/Kowalski legal case HIV epidemic: Challenges to relationships September 11 th : Obtaining family benefits Right to marry: Partnerships/CUs/Marriage 12 States & DC marriage; 8 States CU/DPs; 30 prohibit Upcoming U.S. Supreme Court Decisions on Marriage Barriers in health care delivery

6 BARRIERS IN HEALTH CARE DELIVERY Challenges in addressing LGBT community at provider/ institutional level Provider/institutional discomfort with sexuality Failure to inquire about sexual orientation Worry that their preferences for care, services & families of choice will not be respected Patient burden to address orientation

7 Barriers Facing LGBT Elders Face discrimination in health insurance, medical care, social services & housing Do not receive Social Security survivor benefits Access to partner s health insurance Invisibility of gay/lesbian elders

8 It s All in the Timing For adults in 1950s / early 1960s: Not a great time to be gay Stigma & discrimination Pressure to remain closeted Criminalized around country Impacts world view of today s elders & concerns for care

9 It s All in the Timing For those growing up in late 1960s/1970s Gay rights & other civil rights movements Different expectations for living Premise: As future elders, different expectations for care

10 CURRENT PERSPECTIVES Most of the elderly do not declare their identity, and institutions rarely make an effort to find out who they are to prepare staff members and residents for what may be an unfamiliar situation.» Jane Gross (2007), New York Times, p. A-1

11 DISCLOSURE (All Ages) Most (70%) disclosed sexual orientation to physician, although few physicians asked (28%). Of those who had not disclosed, many (40%) would like to. Many (17%) avoided or delayed seeking care due to concerns related to their sexual orientation.» Stein & Bonuck, 2001

12 DISCLOSURE (60+) Almost 40% did not disclose identity 30% concerned about bad reaction/treatment 13% avoided/delayed care due to sexual orientation» Stein & Bonuck, 2001

13 Health Care Proxy/Living Will Knowledge & Practices Know About Living Wills 90% Know About Health Care Proxy 72% Ever Sign a Living Will 38% Ever Sign Health Care Proxy 42% Stein & Bonuck, 2001

14 Concerns About Long-Term Care Fears about coming out Being abused or neglected by those dependent upon (health care aides, nurses, doctors) Not receiving equal or safe treatment It would be terrible for all the usual reasons and even worse if they knew I was a lesbian. I d rather be with people I feel safe with.» Stein, Beckerman & Sherman, 2010

15 Experiences in LTC Universal concerns of nursing home residents: Staff not talking directly to them Loss of energy Fear of not receiving care Staff determining mealtime socialization patterns & other activities

16 Experiences in LTC Challenges of being gay in LTC: Fear of less than equal care Dealing with roommates who disliked gay people Being careful not to offend others Hiding their lives Having to live with bullies from the past

17 Provider concerns: Experiences in LTC Very high anxiety about providers of daily physical care It s a terrible feeling to be dependent, and needing their help to get to the bathroom, and being afraid they would be unkind if they knew. Less anxiety about anti-gay physician care

18 Experiences in LTC Psychosocial concerns: Worries of loneliness, isolation & loss Could not talk about their lives, partners & grief after loss of their partner Would be at some risk for talking about their lives

19 DISCRIMINATION IN LTC Less than ¼ (22%) LGBT older adults felt LGBT elders could be open with LTC staff (n=278) Majorities were concerned about: Discrimination by staff & residents Isolation from other residents Abuse or neglect by staff (n=649) 328 (43%) reported 853 instances of mistreatment Harassment, admission/discharge, restriction of visitors/proxies, denial of care Staff refused to accept health care proxy for resident s spouse/partner (11% of reported mistreatment)» National Senior Citizens Law Center, et al. (2011)

20 SUGGESTIONS FOR IMPROVED CARE How can facilities be more gay-friendly? Having staff who don t assume heterosexuality Who treat them with respect & dignity Who are non-judgmental Who recognize residents for the lives they lived

21 SUGGESTIONS FOR IMPROVED CARE Staff training Promoting respect & acceptance Supporting intimate relationships

22 SUGGESTIONS FOR IMPROVED CARE Living arrangements in LTC: Would feel safer on separate floor for gay residents Prefer having gay or gay-friendly health providers Desire option to share room with their partner Gay support groups & bereavement groups

23 CONCLUSIONS RESEARCHERS Routinely inquire about sexual orientation & identity Consider LGBT issues in framing research questions Consider impact of findings on LGBT populations

24 CONCLUSIONS PROVIDERS Explore diverse family relationships & sexuality in a routine way Create gay-accepting care environments Promote gay-accepting diversity training Acknowledgment & respect for partners & close friends Assure clients understand need for health care planning Respect patient choices & preferences

25 PUBLICATIONS Stein, G.L., & Almack, K. (2012). Care near the end of life: The concerns, needs, and experiences of LGBT elders. In R. Ward, I. Rivers, & M. Sutherland (Eds.) Lesbian, gay, bisexual and transgender ageing: Biographical approaches for inclusive care and support. London, UK: Jessica Kingsley Publishers. Stein, G.L., Beckerman, N.L., & Sherman, P.A. (2010). Lesbian and gay elders and long-term care: Identifying the unique psychosocial perspectives and challenges. Journal of Gerontological Social Work, 53(5), Stein, G.L., & Bonuck, K.A. (2001). Attitudes on end-of-life care and advance care planning in the lesbian and gay community. Journal of Palliative Medicine, 4(2), Stein, G.L., & Bonuck, K.A. (2001). Physician-patient relationships among the lesbian and gay community. Journal of the Gay and Lesbian Medical Association, 5(3), Stein, G.L. (2002, Fall). Welcoming elder lesbian and gay patients in palliative care settings. American Academy of Hospice and Palliative Medicine Bulletin, 3(1), 6-7.

26 For more information: Gary L. Stein, JD, MSW Associate Professor Wurzweiler School of Social Work 2495 Amsterdam Avenue New York, NY , ext

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