#275-END-OF-LIFE AND ADVANCE CARE PLANNING CONSIDERATIONS FOR LESBIAN, GAY, BISEXUAL, AND TRANSGENDER PATIENTS
FAST FACT AND CONCEPTS #275 PDF
Authors: Andrew Lawton MD, Jocelyn White MD, and Erik Fromme MD
Background The end-of-life care needs of lesbian, gay, bisexual, and transgender/transsexual (LGBT) patients are in many ways identical to those of non-LGBT patients. However, health care providers should recognize that some unique needs and considerations do exist. This Fast Fact discusses the issues of advance care planning and partner and family involvement, as they pertain to LGBT patients. It ends with a discussion about open communication regarding sexual orientation, and how this may be facilitated by providers. While there is minimal literature on the end-of life care needs specific to transgender individuals, we feel that the summary and recommendations presented below, though based largely on data regarding lesbian, gay, and bisexual patients, apply to the transgender population as well.
Advance Care Planning The inclusion of same-sex partners in decision-making and treatment planning has been repeatedly shown to be a priority for LGBT patients facing life-limiting illness (1).
• Those who desire their same-sex partner to be their health care representative (“health care power of attorney” or “health care agent/proxy”) must complete an Advance Directive (AD) formally making such a designation. Without such documentation, a same-sex partner may have limited or no rights regarding the medical decision-making and treatment planning for her or his partner, especially if there has been a history of non-acceptance of the same-sex relationship by the patient’s biological family members (2,3).
• One study suggests that while a majority of LGBT patients are knowledgeable about ADs and the appointment of health care proxies, only 49% of those who desire a same-sex partner to be their surrogate decision maker have completed the necessary documentation (3). Providers are encouraged to educate patients about the importance of completing such documentation, such that their medical and end-of-life wishes may be met.
• State-specific legal recognition of same-sex marriage is expanding in the US. However, even legally married LGBT individuals who want their partner to be their surrogate decision makers are still advised to complete legal ADs designating that. For instance, they may be hospitalized while traveling in a state that does not recognize the legality of their marriage.
Partner and Family Involvement
• LGBT patients may receive support from unique social circles, sometimes referred to as “lavender families” or “families of choice,” with whom they find acceptance. Such families may be comprised of heterosexual friends, other members of the LGBT community, co-workers, and biological relatives, all of whom may provide support at the end-of-life (2,4).
• The end-of-life can be a time of reunion and reconciliation with estranged family and friends, and this may be especially true for LGBT patients who may have experienced isolation from these individuals in the past due to their sexual orientation (2). Providers should be sensitive to the potentially complex family and social dynamics that these reunions can create for both the patient and his or her partner. For instance, a patient’s family may initiate some reconciliation with a patient, but in a way that denies the role of the partner or family of choice. Additionally, when such reunions do not occur, feelings of grief, loss, and abandonment experienced by an LGBT individual at the end-of-life may be magnified.
• Clinicians may consider inquiring about whether a patient’s biological family knows that a patient’s legally designated surrogate decision maker is the patient’s LGBT partner. Trouble-shooting with the patient on how to proactively communicate this may help avoid conflicts as the patient is actively dying.
• Partners facing the loss of their same-sex loved one may experience disenfranchised grief – grief which is not acknowledged or viewed as legitimate, owing to the relationship not being fully recognized by one’s family or community (5,6). Such disenfranchisement may limit the partner’s ability to grieve openly, result in a lack of bereavement support from health care professionals, and augment feelings of isolation (2,5). Palliative and primary care providers should be sensitive to this when monitoring the grief reaction of a newly widowed partner, and proactively offer bereavement support services as indicated.
Discussion of Sexual Orientation
• The decision of LGBT patients to discuss their sexual orientation with health care providers may be affected by past negative reactions to such disclosure and, in some cases, concerns about discrimination (1).
• As sexual orientation is intrinsic to a patient’s social history, its recognition and acceptance by health care providers is essential to the provision of holistic and patient-centered palliative care. Additionally, an appreciation of a patient’s sexuality and sexual orientation is perhaps especially pertinent to end-of-life care, given the importance of assisting patients in life review and reflection (1).
• Clinicians should use inclusive language when communicating with all patients (1). The terms “significant other” or “partner,” for example, are favored over “husband/wife/spouse,” as the latter may not fully reflect the significant relationships in a patient’s life (7). Once established, clinicians should generally use the term patients themselves use to describe their significant relationship, e.g., “boyfriend,” “girlfriend,” “wife,” “husband,” “partner,” “roommate.”
• When inquiring about a patient’s social history and support network, consider asking one or more of the following: Who is family for you? Whom do you most rely on for support? Do you currently have a significant other or partner? These questions avoid assumptions and allow patients to respond openly about their sexual orientation and those who may play an important role in their end-of-life care.
Resources LGBT patients and their health care providers may find more information on advance care planning and other pertinent health care topics at the following websites:
• National Resource Center On LGBT Aging http://www.lgbtagingcenter.org
• Human Rights Campaign © (Section on Health & Aging) http://www.hrc.org/issues/health-and-aging
1. 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):602-611.
2. Rawlings D. End-of-life care considerations for gay, lesbian, bisexual, and transgender individuals. Int J Palliat Nurs. 2012; 18(1):29-34.
3. Stein G, Bonuck KA. Attitudes on end-of-life and advance care planning in the lesbian and gay community. J Palliat Med. 2001; 4(2):173-190.
4. Neville S, Henrickson M. The constitution of ‘lavender families’: a LGB perspective. J Clin Nurs. 2009; 18(6):849-856.
5. Cartwright C, Hughes M, Lienert T. End-of-life care for gay, lesbian, bisexual and transgender people. Cult Health Sex. 2012; 14(5):537-548.
6. Almack K, Seymour J, Bellamy G. Exploring the impact of sexual orientation on experiences and concerns about end-of-life care and on bereavement for lesbian, gay and bisexual older people. Sociology. 2010; 44(5):908-924.
7. Inclusive Services for LGBT Older Adults: A Practical Guide To Creating Welcoming Agencies. National Resource Center on LBGT Aging. March 2012. Available at: http://www.lgbtagingcenter.org/resources/resource.cfm?r=487. Accessed: May 2, 2013.
Authors’ Affiliations: Oregon Health & Science University, Portland, OR (AL, EF); Legacy Health, Portland, OR (JW).
Fast Facts and Concepts are edited by Drew A Rosielle MD (University of Minnesota Medical School and Fairview Health Services) and Sean Marks MD (Medical College of Wisconsin), and are published by the End of Life/Palliative Education Resource Center at the Medical College of Wisconsin. For more information write to: firstname.lastname@example.org. More information, as well as the complete set of Fast Facts, are available at EPERC: http://www.mcw.edu/eperc.
Copyright/Referencing Information: Users are free to download and distribute Fast Facts for non-commercial educational purposes only. Lawton A, White J, Fromme E. End-of-life and advance care planning considerations for lesbian, gay, bisexual, and transgender patients. Fast Facts and Concepts. February 2014; 275. Available at: http://www.eperc.mcw.edu/fastfact/ff_275.htm.
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