Abstract
There is a sizeable LGBT population for whom end of life care services are required. However, over and above the tremendous challenges that most people face at end of life, there are several significant additional obstacles that LGBT patients at end of life encounter, barriers that often prevent them from receiving appropriate end of life care.
There remains a paucity of research that focuses specifically on understanding the needs, preferences, and perspectives of LGBT patients with life-limiting cancers or other terminal illnesses at end of life, and how their preferences and those of their partners and families of choice influence their end of life care decisions. This gap in turn limits our ability to design evidence-based LGBT-focused palliative care and end of life programs. Lack of sensitivity to, or respect for, cultural and social differences may compromise end of life care for LGBT patients and yet care is provided within a healthcare system where staff are often uncomfortable with, or even discriminate against, LGBT patients, their life partners, and families of choice. Despite significant recent legal changes in terms of visitation of a loved one in the hospital and acting as a proxy when an LGBT patient is no longer able to, legal and enforcement barriers remain; while heterosexual, married couples have the right to make medical decisions for a partner who is incapacitated, this is not automatically a right for LGBT couples.
Implications for future research, program development and policy development and enforcement are discussed.
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Quotes from C.M. are from an interview of the author with Chris MacLellan [Name used with permission] who cared for his life partner, Richard Schiffer, throughout his illness and death. For full information on their story go to: http://interactive.sun-sentinel.com/lgbt-dying-couple/index.html.
References
American Cancer Society. Cancer facts & figures 2014. Atlanta, GA; 2014.
Grant JM. Outing age 2010. Washington, DC: National Gay and Lesbian Task Force Policy Institute; 2009.
Burgard SA, Cochran SD, Mays VM. Alcohol and tobacco use patterns among heterosexually and homosexually experienced California women. Drug Alcohol Depend. 2005;77(1):61–70.
Gruskin EP, et al. Patterns of cigarette smoking and alcohol use among lesbians and bisexual women enrolled in a Large Health Maintenance Organization. Am J Public Health. 2001;91(6):976–9.
Heffernan K. The nature and predictors of substance use among lesbians. Addict Behav. 1998;23(4):517–28.
McCabe SE, et al. Sexual orientation, substance use behaviors and substance dependence in the United States. Addiction. 2009;104(8):1333–45.
Ryan CM, Huggins J, Beatty R. Substance use disorders and the risk of HIV infection in gay men. J Stud Alcohol. 1999;60(1):70–7.
Ryan H, et al. Smoking among lesbians, gays, and bisexuals: a review of the literature. Am J Prev Med. 2001;21(2):142–9.
Stall RD, et al. Cigarette smoking among gay and bisexual men. Am J Public Health. 1999;89(12):1875–8.
Tang H, et al. Cigarette smoking among lesbians, gays, and bisexuals: how serious a problem? (United States). Cancer Causes Control. 2004;15(8):797–803.
Valanis BG, et al. Sexual orientation and health: comparisons in the women’s health initiative sample. Arch Fam Med. 2000;9(9):843–53.
Hughes C, Evans A. Health needs of women who have sex with women. BMJ (Clinical Research Ed.). 2003;327(7421):939–40.
Mayer KH, et al. Sexual and gender minority health: what we know and what needs to be done. Am J Public Health. 2008;98(6):989–95.
O’Hanlan KA. Health policy considerations for our sexual minority patients. Obstet Gynecol. 2006;107(3):709–14.
Brown JP, Tracy JK. Lesbians and cancer: an overlooked health disparity. Cancer Causes Control. 2008;19(10):1009–20.
Dibble SL, Roberts SA, Nussey B. Comparing breast cancer risk between lesbians and their heterosexual sisters. Women’s Health Issues. 2004;14(2):60–8.
Anderson JS, Vajdic C, Grulich AE. Is screening for anal cancer warranted in homosexual men? Sex Health. 2004;1(3):137–40.
Biggar RJ, Rosenberg PS, Coté T. Kaposi’s sarcoma and non-Hodgkin’s lymphoma following the diagnosis of AIDS. Multistate AIDS/Cancer match study group. Int J Cancer. 1996;68(6):754–8.
D’Souza G, et al. Incidence and epidemiology of anal cancer in the multicenter AIDS cohort study. J Acquir Immune Defic Syndr (1999). 2008;48(4):491–9.
Jacobson LP, Armenian HK. An integrated approach to the epidemiology of Kaposi’s sarcoma. Curr Opin Oncol. 1995;7(5):450–5.
Katz MH, et al. Temporal trends of opportunistic infections and malignancies in homosexual men with AIDS. J Infect Dis. 1994;170(1):198–202.
Palefsky JM, et al. Prevalence and risk factors for human papillomavirus infection of the anal canal in human immunodeficiency virus (HIV)-positive and HIV-negative homosexual men. J Infect Dis. 1998;177(2):361–7.
Palefsky JM, Shiboski S, Moss A. Risk factors for anal human papillomavirus infection and anal cytologic abnormalities in HIV-positive and HIV-negative homosexual men. J Acquir Immune Defic Syndr. 1994;7(6):599–606.
van der Snoek EM, et al. Human papillomavirus infection in men who have sex with men participating in a dutch gay-cohort study. Sex Transm Dis. 2003;30(7):639–44.
Clements-Nolle K, et al. HIV prevalence, risk behaviors, health care use, and mental health status of transgender persons: implications for public health intervention. Am J Public Health. 2001;91(6):915–21.
Feldman JL, Goldberg JM. Transgender primary medical care. Int J Transgend. 2007;9(3–4):3–34.
American Cancer Society. Does body weight affect cancer risk? American Cancer Society.
Simon S. American Cancer Society report: breast cancer death rates decline, but more slowly among poor. 3 Oct 2011.
Cochran SD, Mays VM. Risk of breast cancer mortality among women cohabiting with same sex partners: findings from the national health interview survey, 1997–2003. J Women’s Health (15409996). 2012;21(5):528–33.
Adelman M, et al. Openhouse: community building and research in the LGBT aging population, in lesbian, gay, bisexual, and transgender aging: research and clinical perspectives. In: Kimmel D, Rose T, David S, editors. New York: Columbia University Press; 2006. pp. 247–64.
Rosenfeld D. Identity work among lesbian and gay elderly. J Aging Stud. 1999;13(2):121.
de Vries B. Aspects of life and death, grief and loss in lesbian, gay, bisexual, and transgender communities. In: Doka K, Tucci AS, editors. Living with grief: diversity and end-of-life care. Washington, DC: Hospice Foundation of America; 2009. pp. 243–57.
Project, L.M.A. and SAGE. Improving the lives of LGBT older adults. New York: Authors; 2010.
Morrison RS, et al. Palliative care consultation teams cut hospital costs for medicaid beneficiaries. Health Aff. 2011;30(3):454–63.
Kamal AH, et al. Palliative care needs of patients with cancer living in the community. J Oncol Pract. 2011;7(6):382–8.
Silveira MJ, et al. Patients’ knowledge of options at the end of life. JAMA. 2000;284(19):2483.
Steinhauser KE, et al. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000;284(19):2476.
Lagman R, et al. Acute inpatient palliative medicine in a cancer center: clinical problems and medical interventions—a prospective study. Am J Hosp Palliat Med. 2007;24(1):20–8.
Bakitas M, et al. The project ENABLE II randomized controlled trial to improve palliative care for rural patients with advanced cancer: baseline findings, methodological challenges, and solutions. Palliat Support Care. 2009;7(1):75–86.
Bakitas M, et al. Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the project ENABLE II randomized controlled trial. JAMA. 2009;302(7):741–9.
O’Hara RE, et al. Impact on caregiver burden of a patient-focused palliative care intervention for patients with advanced cancer. Palliat Support Care. 2010;8(4):395–404.
Manfredi PL, et al. Palliative care consultations: how do they impact the care of hospitalized patients? J Pain Symptom Manage. 2000;20(3):166–73.
Morrison RS, Meier DE. The National Palliative Care Research Center and the Center to Advance Palliative Care: a partnership to improve care for persons with serious illness and their families. J Pediatr Hematol Oncol. 2011. 33(Suppl 2):S126–S131.
Penrod JD, et al. Hospital-based palliative care consultation: effects on hospital cost. J Palliat Med. 2010;13(8):973–9.
Higginson IJ, et al. Do hospital-based palliative teams improve care for patients or families at the end of life? J Pain Symptom Manage. 2002;23(2):96–106.
Higginson IJ, et al. Is there evidence that palliative care teams alter end-of-life experiences of patients and their caregivers? J Pain Symptom Manage. 2003;25(2):150–68.
Bailey FA, et al. Improving processes of hospital care during the last hours of life. Arch Intern Med. 2005;165(15):1722–7.
Bascom PB. A hospital-based comfort care team: consultation for seriously ill and dying patients. Am J Hosp Palliat Care. 1997;14(2):57–60.
Abrahm JL, et al. The impact of a hospice consultation team on the care of veterans with advanced cancer. J Pain Symptom Manage. 1996;12(1):23–31.
Kuin A, et al. Palliative care consultation in The Netherlands: a nationwide evaluation study. J Pain Symptom Manage. 2004;27(1):53–60.
Morrison RS, et al. Cost savings associated with US hospital palliative care consultation programs. Arch Intern Med. 2008;168(16):1783–90.
Casarett D, et al. Do palliative consultations improve patient outcomes? J Am Geriatr Soc. 2008;56(4):593–9.
Ersek M, et al. Multicultural considerations in the use of advance directives. Oncol Nurs Forum. 1998;25(10):1683–90.
Kagawa-Singer M, Blackhall LJ. Negotiating cross-cultural issues at the end of life: “You got to go where he lives”. JAMA. 2001;286(23):2993–3001.
Searight HR, Gafford J. Cultural diversity at the end of life: issues and guidelines for family physicians. Am Fam Physician. 2005;71(3):515–22.
Krakauer EL, Crenner C, Fox K. Barriers to optimum end-of-life care for minority patients. J Am Geriatr Soc. 2002;50(1):182–90.
Adams CE, Horn K, Bader J. Hispanic access to hospice services in a predominantly Hispanic community. Am J Hosp Palliat Med. 2006;23(1):9–16.
Blackhall LJ, et al. Ethnicity and attitudes towards life sustaining technology. Soc Sci Med. 1999;48(12):1779–89.
Bonham VL. Race, ethnicity, and pain treatment: striving to understand the causes and solutions to the disparities in pain treatment. J Law Med Ethics. 2001;29(1):52–68.
Born W, et al. Knowledge, attitudes, and beliefs about end-of-life care among inner-city African Americans and Latinos. J Palliat Med. 2004;7(2):247–56.
Bullock K. Promoting advance directives among African Americans: a faith-based model. J Palliat Med. 2006;9(1):183–95.
Francoeur RB, et al. Palliative care in the inner city. Cancer (0008543X). 2007;109(2):425–34.
Johnson KS, Kuchibhatla M, Tulsky JA. What explains racial differences in the use of advance directives and attitudes toward hospice care? J Am Geriatr Soc. 2008;56(10):1953–8.
Kwak J, Haley WE. Current research findings on end-of-life decision making among racially or ethnically diverse groups. Gerontologist. 2005;45(5):634–41.
Reese DJ, et al. Hospice access and use by African Americans: addressing cultural and institutional barriers through participatory action research. Soc Work. 1999;44(6):549–59.
Barker JC. Lesbian aging: an agenda for social research. In: Herdt G, de Vries B, editors. Gay and lesbian aging: research and future directions. New York: Springer; 2004. pp. 29–72.
Johnson KS, et al. Racial differences in hospice revocation to pursue aggressive care. Arch Intern Med. 2008;168(2):218–24.
Kwak J, Haley WE. Current research findings on end-of-life decision making among racially or ethnically diverse groups. Gerontologist. 2005;45(5):634–41.
True G, et al. Treatment preferences and advance care planning at end of life: the role of ethnicity and spiritual coping in cancer patients. Ann Behav Med. 2005;30(2):174–9.
Johnson KS, Elbert-Avila KI, Tulsky JA. The influence of spiritual beliefs and practices on the treatment preferences of African Americans: a review of the literature. J Am Geriatr Soc. 2005;53(4):711–9.
Shrank WH, et al. Focus group findings about the influence of culture on communication preferences in end-of-life care. J Gen Intern Med. 2005;20(8):703–9.
Torke AM, et al. Medical care at the end of life: views of African American patients in an urban hospital. J Palliat Med. 2005;8(3):593–602.
Braun UK, et al. Voices of African American, Caucasian, and Hispanic surrogates on the burdens of end-of-life decision making. J Gen Intern Med. 2008;23(3):267–74.
Mazanec PM, Daly BJ, Townsend A. Hospice utilization and end-of-life care decision making of African Americans. Am J Hosp Palliat Med. 2010;27(8):560–6.
Blendon RJ, Szalay US. Should physicians aid their patients in dying? JAMA. 1992;267(19):2658.
Searight HR, Gafford J. Cultural diversity at the end of life: issues and guidelines for family physicians. Am Fam Physician. 2005;71(3):515–22.
Shrank WH, et al. Focus group findings about the influence of culture on communication preferences in end-of-life care. J Gen Intern Med. 2005;20(8):703–9.
Jenkins C, et al. End-of-life care and African Americans: voices from the community. J Palliat Med. 2005;8(3):585–92.
Zapka JG, et al. Care at the end of life: focus on communication and race. J Aging Health. 2006;18(6):791–813.
Harding R, Epiphaniou E, Chidgey-Clark J. Needs, experiences, and preferences of sexual minorities for end-of-life care and palliative care: a systematic review. J Palliat Med. 2012;15(5):602–11.
Cartwright C. Ethical challenges in end-of-life care for GLBTI individuals. J Bioeth Inq. 2012;9(1):113–4.
Cartwright C, Hughes M, Lienert T. End-of-life care for gay, lesbian, bisexual and transgender people. Cult Health Sex. 2012;14(5):537–48.
June A, et al. Views of hospice and palliative care among younger and older sexually diverse women. Am J Hosp Palliat Med. 2012;29(6):455–61.
Katz A. Gay and lesbian patients with cancer. Oncol Nurs Forum. 2009;36(2):203–7.
Price E. Coming out to care: gay and lesbian carers’ experiences of dementia services. Health Soc Care Community. 2010;18(2):160–8.
Boehmer U, Case P. Physicians don’t ask, sometimes patients tell: disclosure of sexual orientation among women with breast carcinoma. Cancer. 2004;101(8):1882–9.
Boehmer U, Linde R, Freund KM. Sexual minority women’s coping and psychological adjustment after a diagnosis of breast cancer. J Women’s Health (15409996). 2005;14(3):214–24.
Clark MA, et al. Planning for future care needs: experiences of unmarried heterosexual and sexual minority women. Women Health. 2010;50(7):599–617.
Fobair P, et al. Comparison of lesbian and heterosexual women’s response to newly diagnosed breast cancer. Psychooncology. 2001;10(1):40–51.
Curtis JR, et al. The quality of patient-doctor communication about end-of-life care: a study of patients with advanced AIDS and their primary care clinicians. Aids. 1999;13(9):1123–31.
Matthews A, et al. A qualitative exploration of the experiences of lesbian and heterosexual patients with breast cancer. Oncol Nurs Forum. 2002;29(10):1455–62.
Averett P, Yoon I, Jenkins CL. Older lesbians: experiences of aging, discrimination and resilience. J Women Aging. 2011;23:216–32.
Hash KM, Netting FE. Long-term planning and decision making among midlife and older gay men and lesbians. J Soc Work End Life Palliat Care. 2007;3(2):59–77.
Boehmer U, Clark M, Sullivan M. Advance care planning by unmarried women of different sexual orientations: the importance of social support. J Women Aging. 2010;22(4):306–20.
Matthews AK. Lesbians and cancer support: clinical issues for cancer patients. Health Care Women Int. 1998;19(3):193–203.
Stein GL, Bonuck KA. Attitudes on end-of-life care and advance care planning in the lesbian and gay community. J Palliat Med. 2001;4(2):173–90.
Varner A. Spirituality and religion among lesbian women diagnosed with cancer: a qualitative study. J Psychosoc Oncol. 2004;22(1):75–89.
Auldridge A, Espinoza R. Health equity and LGBT elders of color: recommendations for policy and practice. New York: SAGE (Services and Advocacy for GLBT Elders); 2013.
Fenge L-A. Developing understanding of same-sex partner bereavement for older lesbian and gay people: implications for social work practice. J Gerontol Soc Work. 2013:1–17.
Kim Y, Loscalzo M, Clark K. Sexual minority health in psycho-oncology. In: Holland J, et al., editors. Psycho-oncology. New York: Oxford University Press; 2015.
Stein GL, Beckerman NL, Sherman PA. Lesbian and gay elders and long-term care: identifying the unique psychosocial perspectives and challenges. J Gerontol Soc Work. 2010;53(5):421–35.
Aldredge PA, Conlon A. Reflections: gay men and lesbians at end-of-life. J Soc Work End Life Palliat Care. 2012;8(2):113–8.
Smolinski KM, Colon Y. Silent voices and invisible walls: exploring end of life care with lesbians and gay men. J Psychosoc Oncol. 2006;24(1):51–64.
Stein GL, Almack K, editors.Care near the end of life. The concerns, needs and experiences of LGBT elders. In: Ward R, Rivers I, Sutherland M, editors. Lesbian, gay, bisexual and transgender ageing: biographical approaches for inclusive care and support. London: Jessica Kingsley Publishers; 2012.
Association, G.a.L.M. Healthy people 2010: companion document for lesbian, gay, bisexual and trasgender (lgbt) health: San Francisco: CA; 2001.
Röndahl G, Innala S, Carlsson M. Nursing staff and nursing students’ attitudes towards HIV-infected and homosexual HIV-infected patients in Sweden and the wish to refrain from nursing. J Adv Nurs. 2003;41(5):454–61.
Vermette L, Godin G. Nurses’ intentions to provide home care: the impact of AIDS and homosexuality. AIDS Care. 1996;8(4):479–88.
Institute, M.M.M. Out and aging the metlife study of lesbian and gay baby boomers 2006: Westport, CT.
Doka KJ. Disenfranchised grief: Recognizing hidden sorrow. Disenfranchised grief: recognizing hidden sorrow. Lexington: Lexington Books/D. C. Heath and Com; 1989.
SAGE and Brookdale Center on Aging. No need to fear no need to hide: a training program about inclusion and understanding of lesbian, gay, bisexual and transgender elders for long-term care and assisted living facilities. New York. 2004.
Reygan FCG, D’Alton P. A pilot training programme for health and social care professionals providing oncological and palliative care to lesbian, gay and bisexual patients in Ireland. Psychooncology. 2013;22(5):1050–4.
Mollon L. The forgotten minorities: health disparities of the lesbian, gay, bisexual, and transgendered communities. J Health Care Poor Underserved. 2012;23(1):1–6.
Hernandez JO. Gay rights one baby-step at a time: protecting hospital visitation rights for same-sex partners while the lack of surrogacy rights lingers comment on “ethical challenges in end-of-life care for GLBTI individuals” by Colleen Cartwright. J Bioeth Inq. 2012;9(3):361–3.
www.lamdalegal.org. Lamda legal: making the case for equality. 2014. www.lamdalegal.org.
www.americanprogress.org. Moving the needle: the impact of the affordable care act on LGBT communities. 2014. https://www.americanprogress.org/issues/lgbt/report/2014/11/17/101575/moving-the-needle/.
Waisel DB. Vulnerable populations in healthcare. Curr Opin Anesthesiol. 2013;26(2):186–92.
LGBT Movement Advancement Project & SAGE, Improving the lives of LGBT older adults. 2010. http://sageusa.org/uploads/Advancing%20Equality%20for%20LGBT%20Elders%20[Final%20COMPRESSED].pdf].
Boulder County Aging Services. Evaluation of project visibility training: outcome and satisfaction. Boulder; 2006.
England, A. C. Opening doors: working with older lesbians and gay men. 2001, Age Concern England: London, UK. http://www.ageconcern.org/uk/Ageconcern/Documents/Opening_Doors_resource_pack.pdf.
The Joint Commission, Advancing effective communication, cultural competence, and patient- and family-centered care for the lesbian, gay, bisexual and transgender (lgbt) community: a field guide. Oak Brook: The Joint Commission; 2011.
Snowdon S. Healthcare equality index 2013: promoting equitable & inclusive care for lesbian, gay, bisexual and transgender patients and their families. Washington, DC: Human Rights Campaign; 2013.
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Elk, R. (2015). Challenges and Recommended Solutions to End of Life Care for Lesbian, Gay, Bisexual and Transgender Patients Diagnosed with Cancer with a Life-Limiting Prognosis. In: Boehmer, U., Elk, R. (eds) Cancer and the LGBT Community. Springer, Cham. https://doi.org/10.1007/978-3-319-15057-4_14
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