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
DOI:
https://doi.org/10.17140/PMHCOJ-1-107Keywords:
Lesbian, Gay, Bisexual and Transgender (LGBT), Health disparities, Hospice, Older adults, Palliative care, End-of-life, Cultural sensitivityAbstract
The acronym LGBT refers to groups of people who are lesbian, gay, bisexual and transgender, groups historically marginalized, mistreated, ignored by society and the health care delivery systems, including hospice and palliative care services. The purpose of this literature review was to explore the characteristics, history, health and health care disparities, social support systems and legal issues of LGBT persons with a particular focus on older adults, end-of-life care, and ways in which hospice and palliative care organizations can better meet their needs. Despite the fact that sound enquiry is needed to improve health-related outcomes, what little research has been done with LGBT adults in general and, specifically, with older LGBT adults, has focused mainly on HIV/AIDS and other sexually transmitted diseases. As a social minority, LGBT persons are more likely to experience economic insecurity, lack health insurance, experience invisibility, and be victimized and mistreated. This is especially true of older LGBT adults who grew up in a less tolerant era when sexual minorities were criminalized and stigmatized as pathological, sinful, and immoral. Their minority status has led to health issues and health care disparities, and requires health professionals to consider systems in a way that redefines family, addresses legal concerns, and responds with options of care unlike those of their heterosexual counterparts. With recent changes in societal attitudes and some progress in addressing legal concerns, hospice and palliative care organizations now have a unique opportunity to lead the health care community by pioneering culturally sensitive and appropriate methods to better serve this population.
References
Ard K, Makadon HJ. Improving the health care of lesbian, gay, bisexual and transgender (LGBT) people: Understanding and eliminating health disparities. Boston, MA, USA: The Fen-way Institute; 2012.
Quinn GP, Schabath MB, Sanchez JA, Sutton SK, Green BL. The importance of disclosure: Lesbian, gay, bisexual, trans-gender/transsexual, queer/questioning, and intersex individuals and the cancer continuum. Cancer. 2015; 121(8): 1160-1163. doi: 10.1002/cncr.29203
Bradford JB, Cahill S, Grasso C, Makadon HJ. Why gather data on sexual orientation and gender identity in clinical set-tings. Boston, MA, USA: The Fenway Institute; 2012b.
The Fenway Institute. Addressing the needs of LGBT people in community health centers: What the governing board needs to know, Boston. Available from: http://www.lgbthealtheducation. org/wp-content/uploads/LGBTHealthforBoards-Final.pdf 2012; Accessed June 2, 2014.
Institute of Medicine (IOM). Report brief: The health of lesbi-an, gay, bisexual, and transgender people: Building a foundation for better understanding. Washington. Available from: http:// www.nap.edu/openbook.php?record_id=13128 2011; Accessed June 12, 2014.
Fausto-Sterling A. The bare bones of sex: Part 1-sex and gen-der. Signs: J Women Cult Soc. 2005; 30: 1491-1527.
DiBennardo R, Gates GJ. Research note: US census same-sex couple data: Adjustments to reduce measurement error and em-pirical implications. Pop Res Policy Rev. 2014; 33(4): 603-614. doi: 10.1007/s11113-013-9289-2
Fitzgerald E. No golden years at the end of the rainbow: How a lifetime of discrimination compounds economic and health disparities for LGBT older adults. The National Gay and Lesbi-an Task Force. Washington. Available from: http://www.thetask-force.org/static_html/downloads/reports/reports/no_golden_ years.pdf 2013; Accessed June 10, 2014.
Conron KJ, Mimiaga MJ, Landers SJ. A population-based study of sexual orientation identity and gender differences in adult health. Am J Public Health. 2010; 100(10): 1953-1960. doi: 10.2105/AJPH.2009.174169
Adelman M, Gurevitch J, de Vries B, Blando JA. Openhouse: Community building and research in the LGBT aging popula-tion. In: Kimmel D, Steven D, eds. Lesbian, gay, bisexual, and transgender aging: Research and clinical perspectives. New York, NY, USA: Columbia University Press; 2006: 247-254.
Blevins D, Werth JL. End-of-life issues for LGBT older adults. In: Kimmel D, Steven D, eds. Lesbian, gay, bisexual, and transgender aging: Research and clinical perspectives. New York, NY, USA: Columbia University Press; 2006: 206-226.
Coulter RS, Kenst KS, Bowen DJ. Research funded by the National Institutes of Health on the health of lesbian, gay, bi-sexual, and transgender populations. Am J Public Health. 2014; 104(2): e105-e112. doi: 10.2105/AJPH.2013.301501
US Department of Health and Human Services (DHHS). Ad-vancing LGBT health & well-being. Available from: http://www. hhs.gov/lgbt/resources/reports/dhhs-lgbt2014annualreport.pdf 2014; Accessed March 31, 2015.
Barnett-Page E, Thomas J. Methods for the synthesis of qualitative research: A critical review. BMC: Med Educ. 2009; 9(1): 59. doi: 10.1186/1471-2288-9-59
Baker K, Krehely J. How health care reform will help LGBT elders. Pub Policy Aging Rep. 2011; 21(3): 19-23.
The Fenway Institute. Optimizing LGBT health under the Affordable Care Act: Strategies for health centers. Boston. Avail-able from: http://www.lgbthealtheducation.org/wp-content/up-loads/Brief-Optimizing-LGBT-Health-Under-ACA-FINAL-12- 06-2013.pdf 2013; Accessed June 2, 2014.
Adams M. ‘Getting to neutral’ on aging policy. Gay Lesbian Rev Worldwide. 2010; 17(2): 27-29.
Gabrielson M. “I will not be discriminated against”: Older lesbians creating new communities. Adv Nurs Sci. 2011; 34(4): 357-373. doi: 10.1097/ANS.0b013e3182300db8
Kimmel D, Rose T, Orel N, Greene B. Historical context for research on lesbian, gay, bisexual, and transgender in aging. In: Kimmel D, Steven D, eds. Lesbian, gay, bisexual, and transgen-der aging: Research and clinical perspectives. New York, NY, USA: Columbia University Press; 2006: 1-19.
Grossman AH. Physical and mental health of older lesbian, gay, and bisexual adults. In: Kimmel D, Steven D, eds. Lesbi-an, gay, bisexual, and transgender aging: Research and clinical perspectives. New York, NY, USA: Columbia University Press; 2006: 53-69.
Chance T. “Going to pieces” over LGBT health disparities: How an amended Affordable Care Act could cure the discrimi-nation that ails the LGBT community. J Health Care Law Policy. 2013: 16(2): 375-402.
Balsam KF, D’Augelli AR. The victimization of older LGBT adults: Patterns, impact, and implications for intervention. In: Kimmel D, Steven D, eds. Lesbian, gay, bisexual, and transgen-der aging: Research and clinical perspectives. New York, NY, USA: Columbia University Press; 2006: 110-130.
Buffie WC. Public health implications of same-sex mar-riage. Am J Public Health. 2011; 101(6): 986-990. doi: 10.2105/ AJPH.2010.300112
Lewis MK, Marshall I. LGBT psychology: Research per-spectives and people of African descent. New York, NY, US: Springer; 2012. doi: 10.1007/978-1-4614-0565-8
Brennan AMW, Barnsteiner J, Siantz MLL, Cotter VT, Ev-erett J. Lesbian, gay, bisexual, transgendered, or intersexed con-tent for nursing curricula. J Prof Nurs. 2012; 28(2): 96-104. doi: 10.1016/j.profnurs.2011.11.004
Fredriksen-Goldsen K, Kim H-J, Barkan S, Muraco A, Hoy-Ellis C. Health disparities among lesbian, gay, and bi-sexual older adults: Results from a population-based study. Am J Public Health. 2013; 103(10): 1802-1809. doi: 10.2105/ AJPH.2012.301110
Fredriksen-Goldsen KI, Muraco A. Aging and sexual ori-entation: A 25-year review of the literature. Res Aging. 2010; 32(3): 372-413. doi: 10.1177/0164027509360355
Wheeler D, Dodd S. LGBTQ capacity building in health care systems: A social work imperative. Health Soc Work. 2011; 36(4): 307-309.
Matharu K, Kravitz RL, McMahon GT, Wilson MD, Fitzger-ald FT. Medical students’ attitudes toward gay men. BMC Med Educ. 2012; 12(71): 1-7. doi: 10.1186/1472-6920-12-71
Lambda Legal. Lambda legal’s survey of discrimination against LGBT people and people with HIV New York. Available from: www.lambdalegal.org/health-care-report 2010; Accessed June 20, 2014.
Hiedemann B, Brodoff L. Increased risks of needing long-term care among older adults living with same-sex partners. Am J Public Health. 2013; 103(8): e27-e33. doi: 10.2105/ AJPH.2013.301393
Moradi B, Wiseman MC, DeBlaere C, et al. LGB of col-or and white individuals’ perceptions of heterosexist stigma, internalized homophobia, and outness: Comparisons of lev-els and links. Couns Psychol. 2010; 38(3): 397-324. doi: 10.1177/0011000009335263
Muraco A, Fredriksen-Goldsen K. That’s what friends do: Informal caregiving for chronically ill midlife and older lesbian, gay, and bisexual adults. J Soc Pers Relat. 2011; 28(8): 1073- 1092. doi: 10.1177/0265407511402419
Dubois KR. Legal concerns of LGBT elders. In: Kimmel D, Steven D, eds. Lesbian, gay, bisexual, and transgender aging: Research and clinical perspectives. New York, NY, USA: Co-lumbia University Press; 2006: 195-205.
Social Security Administration. Important information about Social Security benefits for same-sex couples. SSA Publication No. 05-10567. Washington, DC. Available from: http://www. ssa.gov/pubs/EN-05-10567.pdf 2014; Accessed June 25, 2014.
Orel NA. Investigating the needs and concerns of lesbian, gay, bisexual, and transgender older adults: The use of qualita-tive and quantitative methodology. J Homosex. 2014; 61(1): 53- 78. doi: 10.1080/00918369.2013.835236
Knight CF. Networking with the gay community to meet the needs of AIDS patients: Special considerations for volunteer training. Am J Hospice Palliative Care. 1990; 7(1): 31-35.
Jones CE. Death and the LGBT community: When culture is not defined by country. Presentation at the 37th Annual Con-ference of the Association of Death Education and Counseling. San Antonio, TX, USA. Available from: http://www.adec.org/ ADEC/2015/Conference_Home/AM15/Homepage-Content-2. aspx?hkey=fe662dc9-9a2c-472b-8549-b68daaab7c9b 2015; Accessed April 18, 2015.
Mayer KH, Bradford JB, Makadon HJ. Sexual and gender minority health: What we know and what needs to be done. Am J Public Health. 2008; 98(6): 989-995. doi: 10.2105/ AJPH.2007.127811
Landers S, Mimiaga, MJ, Krinsky L. The open door project task force: A qualitative study on LGBT aging. J Gay Lesbian Soc Services. 2010; 22: 316-336. doi: 10.1080/10538720903426438
Porter KE, Krinsky L. Do LGBTaging trainings effectuate pos-itive change in mainstream elder service providers? J Homosex. 2014; 61(1): 197-216. doi: 10.1080/00918369.2013.835618
Kling E, Kimmel D. SAGE: New York City’s pioneer orga-nization for LGBT elders. In: Kimmel D, Steven D, eds. Lesbi-an, gay, bisexual, and transgender aging: Research and clinical perspectives. New York, NY, USA: Columbia University Press; 2006; 265-276.
Published
How to Cite
Issue
Section
License
This work is licensed under a Creative Commons Attribution 4.0 International License.
All content published in Palliative Medicine and Hospice Care (PMHC) is licensed under the Creative Commons Attribution 4.0 International License (CC BY 4.0). This license allows anyone to copy, distribute, transmit, and adapt the work — including for commercial purposes — provided appropriate credit is given to the original author(s) and source.
