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Challenges and Recommended Solutions to End of Life Care for Lesbian, Gay, Bisexual and Transgender Patients Diagnosed with Cancer with a Life-Limiting Prognosis

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Cancer and the LGBT Community

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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Notes

  1. 1.

    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.

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  1. College of Nursing, University of South Carolina, Columbia, SC, USA

    Ronit Elk Ph.D.

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  1. Department of Community Sciences, Boston Univ. School of Public Health, Boston, Massachusetts, USA

    Ulrike Boehmer

  2. College of Pharmacy, University of South Carolina, Columbia, South Carolina, USA

    Ronit Elk

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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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