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Embracing Sexual and Gender Diversity at the End of Life

Introduction

Lesbian, gay, bisexual and transgender (LGBT) people are medically underserved populations who experience pervasive discrimination in their lives. This negatively impacts their health and well-being throughout the life course. Historically, sexual and gender minority identities have been criminalized and pathologized, which has contributed to their marginalization and discrimination. The existence of structural barriers within health care systems has contributed to LGBT individuals’ postponement or avoidance of receiving care. Furthermore, LGBT communities are often aggregated together to promote advocacy and political activism. However, this has created confusion and tension because LGBT populations are not monolithic. Although they may share similar challenges and experiences of oppression, each community has unique needs. Fundamentally, sexual orientation differs from gender identity. This article will provide an overview of basic definitions, an explanation of how stigma produces barriers to health care access, and suggestions on creating a welcoming and inclusive environment for LGBT individuals.

Definitions

Although sex and gender are often used interchangeably, sex refers to the physiological anatomy at birth (i.e., genitalia, reproductive organs, and chromosome pair) whereas gender refers to the role-based distinctions of being a man or woman and the behavioral, psychological, or cultural traits associated with it. Gender identity refers to one’s internal perception of being a man or woman. For some people, their gender identity is aligned with their sex assigned at birth; for others, their gender identity may differ from their physical anatomy or expected social roles. Moreover, not everyone subscribes to the binary model of gender (i.e., male or female) held by many Western societies. Some individuals perceive themselves as being between or beyond these two genders. Gender expression refers to the way people outwardly express their internal sense of masculinity or femininity (through their dress, behavior, interaction, etc.). Gender-nonconformity refers to behavior or appearance which do not conform to social expectations for a given gender.

The word transgender is used as an umbrella term to refer to people whose gender identity and/or gender expression differs from the one assigned at birth. The word trans is often used as a shorthand to refer to the same individuals or communities. In contrast, the term cisgender refers to non-trans identities, or people whose gender identity aligns with their biological sex. A spectrum of identities exists under the transgender umbrella and the language which transgender individuals use to represent themselves is constantly evolving. Examples of current terminology include gender bender, third gender, gender variant, gender diverse, gender queer, gender fluid, bi-gender, multi-gender, etc.

Transgender individuals may live part-time or full-time in their affirmed gender identity. There are different dimensions to the gender transition process. Some individuals may engage in a social transition by using a name, pronouns, dressing, or behaving in a manner which reflects their affirmed gender. Others may engage in a legal transition by changing the name and gender marker on legal documents such as a driver’s license, birth certificate, etc. Some trans people choose to bring their biological sex into alignment with their gender identity through a medical transition process by undergoing gender-affirming hormone replacement therapy and/or gender-affirming surgeries. The decision to engage in any part of the gender transition process is highly personal and is often influenced by the financial resources to do so.

Sexual orientation refers to the sexual, emotional, spiritual, or romantic attraction that one feels towards others, often labeled based on the sex/gender of others in relation to one’s own. Common terminology include lesbian, gay, bisexual, pansexual, etc. Sexual orientation is often thought to have several components or dimensions. Sexual orientation is different from sexual identity because it encompasses relationships with others, while sexual identity is a concept of self. Identity can be somewhat complex because it embodies both one’s personal identity (sense of self-concept derived from one’s sexual and romantic interests and attractions) and that of societal identity. Sexual attraction signifies the intrapersonal, psychological aspects of one’s sexuality and relates to a person’s patterns of romantic and/or sexual feelings towards others.

Note that this suggests “patterns,” recognizing that there is often not one path to attraction. Also, often embodied in a discussion of the dimensions of sexual orientation is sexual behavior, which acknowledges a person’s sexual activity (both alone and with others). Sexual behavior may not necessarily define one’s sexual identity. For example, a man who has sex with other men may not necessarily identify as gay.

It is also important to note that sexual orientation and gender identity can be fluid and can change over time. Thus, clinical practitioners should never make assumptions about their patients. Additionally, this underscores the need to assess sexual orientation and gender identity during the intake process, so that clinicians can be culturally and medically competent in their care of sexual and gender minority populations.

An Architecture of Exclusion

Claiming an identity can result in consequences such as opportunities, challenges, and membership in social identity groups. Not all individuals who fit the categories of LGBT may embrace these identity labels. Health care providers must consider the socio-political and historical context of LGBT populations. For example, homosexuality was pathologized as a mental illness until 1973, when it was finally removed from the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM). Same sex intimacy was considered a crime in the U.S. until 2003, when Lawrence v. Texas invalidated sodomy laws which were used to criminalize homosexuality. Ongoing debate continues regarding the diagnostic label in the DSM used for transgender individuals. Some critics argue that the current psychiatric diagnosis of Gender Dysphoria maintains the pathologization of trans identities while others argue that removing this diagnosis will compromise access to services for transgender individuals.

The pathologization and criminalization of LGBT identities have led to their stigma and discrimination. This, in turn, has produced an interlocking web of inequities which can have cascading effects. For example, many have suffered from employment inequities which can result in long-term negative effects on their financial well-being and can impact their access to adequate health insurance. LGBT people tend to have a lower socioeconomic status and a higher poverty rate compared to the U.S. general population. Individuals may engage in the underground economy for survival which places them at greater risk for health and legal problems. Research has found that LGBT individuals engage in higher rates of substance use (and misuse) to cope with their minority stress. This can have adverse effects on their physical and mental health.

As a result of their stigma, LGBT individuals experience barriers to health care access. They encounter interpersonal discrimination from health care providers, such as being denied care or receiving physical or verbal abuse from providers. In addition, the lack of training and research on the needs of LGBT populations have kept them invisible and created structural barriers. Health care providers often do not know how to provide culturally or medically competent care to LGBT individuals. Even if they do not intend to discriminate against their LGBT patients, health care providers work within systems which reflect heterosexist and cisgenderist values—that is, discriminating against homosexual and transgender people based on the assumption that heterosexual and cisgender identities are considered the normal sexual orientation and gender identity. These assumptions are so pervasive that there is little room allowed for the possibility of LGBT identities and that when such an individual does require care, it becomes a social emergency. For example, in a hospice in-patient center where patient room assignments are based on biological sex, how does the team respond to a hospice patient who is transgender and needs to be admitted? If the patient and family are considered the unit of care, how is “family” defined by the hospice organization? Specifically, is family defined as a biological or legal relationship only, or is there any consideration given to relationships which extend past these boundaries? The language that is used when interacting with patients and families, the organizational policies, and even the physical space of the environment, can reflect heterosexist and cisgenderist assumptions which create barriers for our LGBT patients.

Because of the discrimination they have experienced from health care providers, many LGBT individuals prefer to avoid or postpone receiving health care which can lead to poor health outcomes. When they do seek care, many LGBT individuals may choose to hide who they are by not disclosing their sexual or gender minority identity to their provider because of fear of mistreatment.

As some lesbian, gay, or bisexual individuals enter institutionalized settings (such as a nursing home), they have decided to go back into the closet to avoid discrimination from facility staff. For those living at home and receiving home-based health care services (like home care or hospice), they may hide photographs of their same sex partnerships before their health care providers arrive. Similarly, some transgender individuals have decided to detransition by reverting to the gender identity based on their assigned sex at birth. During the end of life journey, when quality of life is so paramount, creating a safe, inclusive environment for LGBT patients receiving hospice services is integral to service excellence.

Assessing Social Support System

Many LGBT older adults must endure the challenge of having a limited social support system. Because of stigma and discrimination, many have experienced rejection from their families and communities after coming out. Lesbian and gay couples are less likely to have produced children in their partnerships. Thus, they are less likely to have adult children available to provide care during periods of illness. LGBT individuals who came out later in life may be estranged from their spouses or children. Consequently, many LGBT individuals develop a non-traditional family structure which may not center around biological or legal ties. Instead, their family of choice may consist of a same sex partner, ex-partner, neighbor, friend, LGBT community member, etc. These relationships are chosen based on ties of intimacy and support. When assessing the LGBT patient’s social support system, hospice providers must be aware of varied support networks and acknowledge these family members of choice by giving them the same level of respect as they do to traditional kinship ties.

Advance Directive Documents

As hospice providers, we know that advance directives are important documents which should be completed by every American adult. These documents provide guidance and directives for providers enabling them to honor the wishes of the patient. They can also lessen the burden for family members who are unsure of what their loved one would want or where there may be disagreement among family members.

For same sex partners and single LGBT individuals, advance directives documents are especially important because health care provider policies and laws often give preference to legal relatives over one’s partner or other members of a family of choice. With advance directives in place, partners or members of one’s family of choice have the power and authority they need to make decisions and, if desired, to be at the patient’s side during health care crises, including the end of life. Advance directives for LGBT individuals can and should incorporate language and directives which ensure respectful treatment based on the patient’s wishes related to gender identity and expression. This includes being referred to by their preferred name and pronouns, to maintain their gender expression based on their gender identity (as much as is medically reasonable), etc.

If we are providing care to an LGBT patient and know they do not have advance directives, our role as health care providers is to explain the importance of having directives (particularly in these patients’ circumstances), alleviate the discomfort of talking about some of the decisions ahead, clarify options and choices, mediate any misunderstandings, and provide the tools and resources to assist in their completion. Because the role of a health care agent designated through advance directives becomes null and void upon death, some discussion and documents should be created for the Disposition of Bodily Human Remains at the time of death—especially for transgender individuals. Otherwise, decisions related to the disposition of bodily human remains, memorial services, etc. default to the legal next of kin. If transgender individuals are concerned that their family of origin may not honor their wishes to respect their gender identity, they should seriously consider naming someone whom they trust to do so and give them the legal power to carry out their wishes. Often, this is accomplished by naming this person as a funeral agent. The person who is selected as the funeral agent may be the same person who serves as the health care agent, although this is not a requirement. Nationally, there have been several instances in which a transgender person died and their family did not honor the individual’s gender identity when making the final arrangements. Thus, giving thought to this issue and taking the appropriate steps to avoid potential problems is essential. The person who is chosen for this role should be able to be a strong advocate. Within the References section below, there is a website listed called Personal Preference Laws for Body Disposition which offers guidance on how to appoint a funeral agent, as well as state-specific guidelines and regulations. A funeral agent can make the decisions regarding the wake and burial, cremation, etc., including the use of the transgender individual’s preferred name, pronouns, and gender expression for the funeral service.

Creating an Inclusive Environment

Creating a welcoming and inclusive environment for LGBT patients requires a multi-pronged approach at all levels of practice. Below are some suggestions which hospice providers and organizations may utilize. Though not an exhaustive list, it can serve as a launching point to improve health care access and quality of service delivery.

  • Change begins with self-awareness and knowledge. Hospice providers need to examine their own values and biases which may intentionally or unintentionally perpetuate heterosexist or cisgenderist practices.
  • Hospice providers are encouraged to build their knowledge base about the needs of LGBT populations and their needs. This includes an understanding of the LGBT communities’ socio-political and historical context and how this may have contributed to their morbidity and mortality.
  • Awareness of community resources (such as support groups, service organizations, and referral networks) is important, as these resources can help to provide social support and build resilience.
  • Practitioners are encouraged to maintain cultural humility and continue receiving ongoing education because the cultural norms and terminology related to LGBT communities often evolve.
  • Words can make a powerful impact. Culturally competent providers engage in respectful communication by avoiding assumptions about their patients’ sexual orientation or gender identity. They use inclusive language which is respectful of their patients’ preferences. Examples include using a patient’s preferred name and pronouns, and using words like “partner” instead of “husband” or “wife.”
  • Develop patient and employee non-discrimination policies to ban discrimination against sexual orientation, gender identity, and gender expression. Create a process for reporting and redressing discrimination if it occurs.
  • Create LGBT affirmative policies. This may require reviewing and revising current policies on patient visitation (acknowledging family members of choice) or patient room assignments (based on gender identity rather than biological sex).
  • Incorporate inclusive language on intake forms and assessment tools. This includes asking questions about the patients’ sexual orientation, gender identity, sex assigned at birth, preferred name, and preferred pronouns.
  • Develop a process which ensures that all staff use the patient’s preferred name and pronouns. Furthermore, all staff should know how to respond if the patient’s name and gender markers are different from earlier health records or insurance documents.
  • Incorporate sexual and gender diverse imagery within marketing collateral and patient education materials.
  • Create a welcoming environment within the physical space of the organization (such as the availability of universal bathrooms or placing LGBT-friendly visual cues in the waiting area or in family conference rooms).
  • Become part of the referral network of LGBT-friendly providers in the community. Build a coalition with other providers to improve access and service delivery.

Having a significant impact in the end of life experience of LGBT patients and their families can be achieved by having an open mind and heart, and being respectful and compassionate in a mindful way to acknowledge the uniqueness of the lives of LGBT patients. This article offered some best practice guidelines to promote exemplary outcomes for all our patients because they rely on a patient-centered care model. Therefore, improving care for the LGBT patient has the added benefit of probably enriching the quality of care for all patients.

Helpful Resources

Acquaviva, K. D. (2017). LGBTQ-inclusive hospice and palliative care: A practical guide to transforming professional practice. New York, NY: Harrington Park Press.

Marie Curie (2016). “Hiding who I am”: The reality of end of life care for LGBT people. United Kingdom: Marie Curie. Retrieved from https://www.mariecurie.org.uk/globalassets/media/documents/policy/policy-publications/june-2016/reality-end-of-life-care-lgbt-people.pdf

National LGBT Health Education Center. (2016). Affirmative care for transgender and gender non-conforming people: Best practices for front-line health care staff. Boston, MA: The Fenway Institute. Retrieved from https://www.lgbthealtheducation.org/wp-content/uploads/2016/12/Affirmative-Care-for-Transgender-and-Gender-Non-conforming-People-Best-Practices-for-Front-line-Health-Care-Staff.pdf

National Resource Center on LBGT Aging. (2012). Inclusive services for LGBT older adults: A practical guide to creating welcoming agencies. Retrieved from http://www.lgbtagingcenter.org/resources/resource.cfm?r=487

National Resource Center on LGBT Aging & Whitman-Walker Health. (2014). Creating end-of-life documents for trans individuals: An advocate’s guide. Retrieved from http://www.lgbtagingcenter.org/resources/resource.cfm?r=694

Funeral Consumers Alliance. (n.d.). Who has the legal right to make decisions about your funeral?: Personal Preference Laws for Body Disposition. Retrieved from  https://www.funerals.org/?consumers=legal-right-make-decisions-funeral

Transgender Law Center. (n.d.). Remembering Christopher Lee: Achieving Justice for Our Loved Ones. Retrieved from http://transgenderlawcenter.org/archives/3292

References

Ansara, Y. G. (2015). Challenging cisgenderism in the ageing and aged care sector: Meeting the needs of older people of trans and/or non-binary experience. Australasian Journal of Ageing, 34(2), 14-18. doi: 10.1111/ajag.12278

Bauer, G. R., Hammond, R., Travers, R., Kaay, M., Hohenadel, K., M., & Boyce, M. (2009). ‘‘I don’t think this is theoretical; this is our lives’’: How erasure impacts health care for transgender people. Journal of the Association of Nurses in AIDS Care, 20(5), 348-361. doi:10.1016/j.jana.2009.07.004

Fredriksen-Goldsen, K. I., Kim, H.-J., Emlet, C. A., Muraco, A., Erosheva, E. A., Hoy-Ellis, C. P., Goldsen, J., & Petry, H. (2011). The aging and health report: Disparities and resilience among lesbian, gay, bisexual, and transgender older adults. Seattle: Institute for Multigenerational Health. Retrieved from http://caringandaging.org/wordpress/wp-content/uploads/2011/05/Full-Report-FINAL-11-16-11.pdf

Grant, J. M., Mottet, L., Tanis, J. E., Harrison, J., Herman, J., & Keisling, M. (2011). Injustice at every turn: A report of the national transgender discrimination survey. Washington, DC: National Center for Transgender Equality. Retrieved from http://www.thetaskforce.org/static_html/downloads/reports/reports/ntds_full.pdf

Rawlings, D. (2012). End-of-life care considerations for gay, lesbian, bisexual, and transgender individuals. International Journal of Palliative Nursing, 18(1), 29-34. doi: 10.12968/ijpn.2012.18.1.29

Van Den Bergh, N. & Crisp, C. (2004). Defining culturally competent practice with sexual minorities: Implications for social work education and practice. Journal of Social Work Education, 40(2), 221-238. doi: 10.1080/10437797.2004.10778491