- Identify important early history events that helped to shape healthcare for the LQBTQ community
- Describe 2 goals for improving LGBTQ health as outlined by Healthy People 2020
- Identify continuing issues that need to be explored regarding LGBTQ health
- Identify healthcare professionals’ considerations to providing culturally competent care
- Describe the difference between sexual orientation and gender identity
- Identify 2 gender affirming medical interventions
The purpose of this activity is to enable the learner to understand considerations in caring for individuals within the LGBTQ community. This includes understanding a brief history of past care and continued evolution of healthcare concerns of the present day. Lastly, the reader will have understanding of personal and institutional interventions that will help to develop personalized care plans for patients and their families.
Taking care of vulnerable populations can be both rewarding but also challenging. Learning to take care of these patient populations means staying up-to-date with evidence-based guidelines while being open to their unique history and special considerations. At times it may also require thinking about one’s own unconscious biases and how these may direct services we provide as healthcare providers. The LGBTQ (Lesbian, Gay, Bisexual, Transgendered and Queer/Questioning) community has experienced a long and difficult history but has also seen great movement in recent years towards being provided comprehensive and compassionate care. Understanding these struggles will help healthcare practitioners develop comprehensive treatment plans that are patient-centered as well as evidence-based.
Gay is not a disease
Understanding a vulnerable population’s history, struggles and growth is as important as providing current comprehensive care. As healthcare providers, we will never be able to fully understand and research all patient populations that we may encounter. We should, however, be open to gaining information and seeking out resources, especially if patients are coming to us with struggles related to their vulnerable state.
At one point in time, being part of the LGBTQ community meant having a disease. Initially, for those interested in promoting a message that being gay could be healthy, there was a main goal: overturn the diagnosis of homosexuality as a mental disorder within the field of psychiatry. In 1973, following years of lobbying by gay activists, the American Psychiatric Association (APA) asked its members attending their annual convention to vote on whether they believed homosexuality was an illness. If it was not an illness, the APA would have to remove the diagnosis of “homosexuality” from the Diagnostic and Statistical Manual of Mental Disorders, Second Edition (DSM-II). 5,854 psychiatrists voted to remove homosexuality from the DSM, and 3,810 to retain it. At the time, APA implemented a compromise, removing homosexuality from the DSM-II but replacing it with “sexual orientation disturbance” for people “in conflict with” their sexual orientation. It took until 1987 for homosexuality to be completely removed from the DSM (Landers & Kapadia, 2019).
The concept of LGBTQ only began to emerge in the late 1970’s through the formation of the National Lesbian and Gay Health Foundation in 1977, which later became the National Lesbian and Gay Health Association. During this period, there was a growing body of work on how homosexuality was impacting society but the focus came less from medicine and more from political theory, psychology, social science, sociology, and education. In the early 1980’s, lesbians were concerned about the paucity of information available about the physical and mental health of lesbians. A few young researchers, public health professionals, and health care professionals organized the first National Lesbian Health Care Survey. In the 1980’s, AIDS was first identified, and the gay community had to face the emergence of a deadly illness that was spreading quickly, had no treatment or cure, and for which transmission vectors were only partly understood. HIV and AIDS forced the LGBTQ community to focus its resources on pushing the health care system to care for and attend to the needs of many gay men, bisexual men, and transgender women, with lesbians, bisexual women, and transgender men frequently at their side as caregivers (Landers & Kapadia, 2019).
In the 1990s, there were successful attempts in some state and local jurisdictions to include questions about sexual orientation on health surveys such as the federally supported screening tools. These questions provided, for the first time, scientifically valid data on LGB respondents (the terminology at the time included only lesbian, gay, and bisexual individuals), enabling public health workers to identify health disparities between LGB people and their heterosexual counterparts. At the end of the second Clinton administration, with valid measure of health disparities available for the first time, the Department of Health and Human Services (DHHS) published its Healthy People 2010 document, which included 29 health disparities faced by LGB persons. In addition, they awarded funding to support the first ever Companion Document for LGBT Health to Healthy People 2010 (which now also included transgender individuals). The Healthy People series is the federal framework for identifying and addressing objectives to improve the nation’s health (Landers & Kapadia, 2019).
Healthy People 2020
LGBTQ individuals encompass all races, ethnicities, religions, and social classes. Sexual orientation and gender identity questions are not asked on most national or state surveys, making it difficult to estimate the number of LGBTQ individuals and their health needs. Research suggests that LGBTQ individuals face health disparities linked to societal stigma, discrimination, and denial of their civil and human rights. Discrimination against LGBTQ persons has been associated with higher rates of psychiatric disorders, substance abuse, and suicide as compared to their heterosexual counterparts. Experiences of violence and victimization are more frequent for LGBTQ individuals and have long-lasting effects on the individual and the community. Personal, family, and social acceptance of sexual orientation and gender identity affects the mental health and personal safety of all LGBTQ individuals. The LGBTQ companion document to Healthy People 2010 highlighted the need for more research to document, understand, and address the environmental factors that contribute to health disparities in the LGBTQ community. As part of this work, we need to increase the number of national, health-related surveys that collect information on sexual orientation and gender identity (SOGI). In order to effectively address LGBTQ health issues, we need to securely and consistently collect SOGI information in national surveys and health records. This will allow researchers and policy makers to accurately characterize LGBTQ health and disparities (Healthy People, 2020).
Hoping to better address these specific LGBTQ healthcare concerns, as well as public health concerns for the public at large, the DHHS in 2010 launched its Healthy People 2020 initiative. This 10-year campaign that outlines the department's goals and objectives for health promotion and disease prevention was the result of a multiyear process that reflects input from a diverse group of individuals and organizations. From this extensive work, the Healthy People committee members made recommendations to DHHS. The Mission of the Healthy People 2020 campaign is to:
Identify nationwide health improvement priorities; increase public awareness and understanding of the determinants of health, disease, and disabilities as well as the opportunities for progress; provide measurable objectives and goals that are applicable at the national, state, and local levels; engage multiple sectors to take action in order to strengthen policies and improve practices that are driven by the best available evidence and knowledge; and identify critical research, evaluation, and data collection needs (Healthy People, 2020, para. 8).
Understanding LGBTQ health starts with understanding the history of oppression and discrimination that these communities have faced. For example, in part because bars and clubs were often the only safe places where LGBTQ individuals could gather, alcohol abuse has been an ongoing problem within the LGBTQ community. Social determinants affecting the health of LGBTQ individuals largely relate to oppression and discrimination. Examples include: Legal discrimination in access to health insurance, discrimination in employment, housing, marriage, adoption, and retirement benefits; lack of laws protecting against bullying in schools; lack of social programs targeted to and/or appropriate for LGBTQ youth, adults, and elders; and the shortage of health care providers who are knowledgeable and culturally competent in LGBTQ health (Healthy People, 2020).
Continuing Issues in LGBTQ Health
A number of issues will need to continue to be evaluated and addressed over the coming decade, including: nationally representative data on LGBTQ Americans; prevention of violence and homicide toward the LGBTQ community, and especially the transgender population; resiliency in LGBTQ communities; LGBTQ parenting issues throughout the life course; elder health and well-being; exploration of sexual/gender identity among youth; need for a LGBTQ wellness model and recognition of transgender health needs as medically necessary (Healthy People, 2020).
Healthcare professionals need to ensure they are building culturally safe work environments and organizations that are inclusive for patients and staff. This includes communities that use language that is respectful, systems and workflows that are inclusive, and staff that have received education and training to provide respectful and safe services. While many individuals want to use inclusive language and organizations want to be inclusive, there still exists an unconscious bias in how some deliver healthcare services. Inclusive language is an important part of respecting people of diverse gender, sex, or sexuality. Language that is inclusive demonstrates respect for how the individual describes their own body, gender, or relationship. As identity has an impact on health and wellbeing, it is important to use inclusive language to create culturally safe environments. "Misgendering" is using language to describe someone that does not match how they identify their own gender, body, or relationship. Sometimes an individual may not look or sound how others expect them to look or sound, but it is important to not assume preference and instead allow the person to inform how they wish to be identified. When conversing with or about individuals of diverse gender or sex, a healthcare professional should respect the person's wishes regarding the use of pronouns. Assuming what pronouns a patient might use may result in making the patient feel uncomfortable and not want to continue care with an organization. Therefore, it may be more appropriate to privately ask a person directly how they wish to be described. Avoiding use of the pronoun the person wishes you to use can make the person feel further alienated (Cahill, Baker & Deutsch, 2015).
Increasing cultural competence
LGBTQ is an umbrella term for two distinct facets of identity: sexual orientation and gender identity. Everyone has a sexual orientation: lesbian and gay individuals are mostly attracted to people of the same sex, while heterosexuals are mostly attracted to individuals of the opposite sex. It is important to keep in mind that sexual orientation is an identity label and may not correspond to the full range of a person’s sexual behavior. Everyone also has a gender identity: transgender people identify as a sex other than the one they were assigned at birth, whereas cisgender people identify with the sex they were assigned at birth. The term transgender also includes those who may identify as non-binary, or gender queer, meaning that their gender identity is not exclusively male or female. When obtaining a sexual history, nurses should ask about both sexual orientation and gender identity in order to identify and understand a patient’s health risks (Margolies & Brown, 2019).
When discussing a person's relationship, it is important to use non-gendered words, to listen for how a person describes the person they are in a relationship with, or to privately ask how a person identifies. Do not assume, such as asking if someone has a boyfriend or girlfriend, or if they are a mother or father. How a person chooses (and if they choose) to label their relationship should be respected and will differ from relationship to relationship. For example, a trans woman and her girlfriend may prefer to be described as a same-gender couple and not a straight couple. People in a relationship who have non-binary genders may prefer to be described using gender-neutral language, such as a partner instead of a boyfriend or girlfriend, or a parent instead of a mother or father. Another important consideration-if a person is in a heterosexual marriage, do not assume their sexuality is heterosexual; ask appropriate questions regardless of marital or relationship status (Margolies & Brown, 2019).
Healthcare professionals should not assume a person's gender, sex, or sexuality. While many healthcare organizations require sex to be documented, a culturally inclusive system will also refer to a person's gender and the name they wish to be called. Education needs to be provided to staff on how to capture a person's sex and gender, and preferred name and title during the patient registration process. When conversing with patients, the clinical nomenclature can be disrespectful, so clinicians should use inclusive language and not make assumptions about sexuality. When it is necessary to discuss historical events or information, clinicians should still use pronouns to match how a person now identifies (Margolies & Brown, 2019).
A clinician can use non-gendered language that does not include unconscious bias or assumptions. Where it is necessary to ask questions that refer to anatomy or biology, healthcare professionals need to be aware that how they ask these questions can potentially create a barrier between themselves and the patient, and that could lead to poor healthcare provision and poor health outcomes. Culturally safe training should be undertaken by all staff in a healthcare organization. Organizational policies and practices should be regularly reviewed to ensure they are inclusive and have engaged both healthcare providers as well as consumers in their development (Margolies & Brown, 2019).
As more LGBTQ patients seek care, healthcare professionals may encounter treatments, behaviors etc., that they may not be familiar or comfortable with. Many of these may be encountered when taking care of transgendered individuals.
Understanding Transgendered Transitional Care
Transgendered individuals may seek any number of gender-affirming interventions, including hormone therapy, surgery, facial hair removal, interventions for the modification of speech and communication, and behavioral adaptations such as genital tucking or chest binding. All of these procedures have been defined as medically necessary by the World Professional Association for Transgender Health. Lower quality research has found improvements in a range of psychosocial measures after gender-affirming treatments such as hormones or surgery. In contrast to past practices in which a set pathway involved a requirement of psychological assessment → hormones → genital surgery, the current standard of care is to allow each transgender person to seek only those interventions which they desire to affirm their own gender identity (White & Reisner, 2016). As healthcare professionals, this means being aware of how these interventions may affect the care of these individuals.
Gender-affirming hormone therapy is the primary medical intervention sought by transgender people. Such treatment allows the acquisition of secondary sex characteristics more aligned with an individual's gender identity. A wide range of gender-affirming surgeries are available to transgender people. These include surgeries specific to gender affirmation, as well as procedures commonly performed in non-transgender populations. Surgeries specific to transgender populations can include: feminizing vaginoplasty, masculinizing phalloplasty / scrotoplasty, masculinizing chest surgery ("top" surgery), facial feminization procedures, and/or reduction thyrochondroplasty (tracheal cartilage shave) (White &Reisner, 2016). The decision to pursue these procedures are discussed between the surgeon and the patient. These procedures are considered cosmetic and therefore are not necessary, however some patients believe that these procedures help to optimize their transition from one gender to another.
Many patients are eager to begin maximal hormone therapy and are opposed to the idea of a slow upward titration. It is recommended that providers discuss these considerations with patients before initiation of hormones in order to make an informed decision. Current guidelines inform providers what the recommended starting doses of hormones are and how to optimally titrate them upwards.
The goal of feminizing hormone therapy is the development of female secondary sex characteristics, and suppression/minimization of male secondary sex characteristics. General effects include breast development, a redistribution of facial and body fat, reduction of muscle mass, reduction of body hair, change in sweat and odor patterns, and arrest and possible reversal of scalp hair loss. Sexual and gonadal effects include reduction in erectile function, changes in libido, reduced or absent sperm count and ejaculatory fluid, and reduced testicular size. Feminizing hormone therapy also brings about changes in emotional and social functioning. The general approach of therapy is to combine an estrogen with an androgen blocker, and in some cases a progestogen (White & Reisner, 2016).
The primary class of estrogen used for feminizing therapy is 17-beta estradiol, which is a "bioidentical" hormone in that it is chemically identical to that from a human ovary. The general approach is similar to estrogen replacement in individuals in menopausal states, with some dosing modifications. Estrogen is most commonly delivered to transgender women via a transdermal patch, oral or sublingual tablet. Compounded topical creams and gels also exist from specialty pharmacies; if these are to be used it is recommended that the prescriber consult with the compounding pharmacist to understand the specific details and dosing of the individual preparation. Conjugated equine estrogens (Premarin) have been used in the past but are not recommended for a number of reasons including the inability to accurately measure blood levels and some suggestion of increased risk for blood clots and cardiovascular risk. Equine estrogens are obtained from the urine of pregnant, catheterized horses and no evidence exists to suggest that these estrogens are superior to bioidentical human estrogen. l. Ethical concerns have been raised regarding the methods of production of equine estrogens (Cahill et al., 2015).
Antiandrogens or androgen blockers, aid in the suppression of testosterone production and blocking of its effects contributes to the suppression / minimization of male secondary sexual characteristics. Unfortunately, many of these characteristics are permanent upon completion of puberty and are irreversible. Spironolactone is the most commonly used androgen blocker in the U.S. Spironolactone is a potassium sparing diuretic, which in higher doses also has direct anti-androgen receptor activity as well as a suppressive effect on testosterone synthesis. Doses of 200mg daily in non-transgender women being treated for hair loss have been described as safe, though doses of up to 400mg/day have been reported without negative effect. Hyperkalemia is the most serious risk but is very uncommon when precaution is taken to avoid use in individuals with renal insufficiency and use with caution and frequent monitoring in those on ACE inhibitor or ARB type medications. Due to its diuretic effect, patients may experience self-limited polyuria, polydipsia, or orthostasis (Cahill et al., 2015).
Antiandrogens can also be used alone to bring reduced masculinization and minimal breast development, or in those patients who wish to first explore reduced testosterone levels alone, or in those with contraindications to estrogen therapy. In the absence of estrogen replacement, some patients may have unpleasant symptoms of hot flashes and low mood or energy. In some patients, complete androgen blockade may be difficult or even impossible using standard regimens. Orchiectomy (removal of the testicles) may represent an ideal option in transgender women who do not desire to retain their gonads; this brief, inexpensive, outpatient procedure requires only several days for recovery and does not preclude future vaginoplasty (Cahill et al., 2015).
There have been no well-designed studies of the role of progestogens in feminizing hormone regimens. Many transgender women and providers alike report an anecdotal improved breast and/or areolar development, mood, or libido with the use of progestogens. There is no evidence to suggest that using progestogens in the setting of transgender care are harmful. In reality, some patients may respond favorably to progestogens while others may find negative effects on mood. progestins. The most commonly used synthetic progestin in the context of transgender care is the oral medroxyprogesterone acetate (Provera) (Cahill et al., 2015).
The goal of masculinizing hormone therapy is the development of male secondary sex characteristics, and suppression/minimization of female secondary sex characteristics. General effects include the development of facial hair, virilizing changes in voice, a redistribution of facial and body subcutaneous fat, increased muscle mass, increased body hair, change in sweat and odor patterns, frontal and temporal hairline recession, and possibly male-pattern baldness. Masculinizing hormone therapy may bring about changes in emotional and social functioning, though these can vary from person to person and stereotypes should be avoided (White & Reisner, 2016).
All testosterone preparations currently used in the U.S. are "bioidentical", meaning they are chemically equivalent to the testosterone secreted from the human testicle. Prior use of oral methyltestosterone and other synthetics commonly encountered in bodybuilding communities has resulted in unsubstantiated concerns about negative hepatic effects of testosterone use in transgender men. Testosterone is available in a number of injected and topical preparations, which have been designed for use in non-transgender men with low androgen levels. Since the label dosing for these medications are based on the treatment of men with low, but not no, testosterone, higher dosing may be needed in transgender men (see table) than are commonly used in non-transgender men (Cahill et al., 2015).
Current research on lesbian and bisexual women and transgender men suggests that each of these groups faces pregnancy-related challenges. For cisgender, female, same-sex couples, who typically lack a sperm-carrying partner, family formation and child-bearing can involve complex decision making, burdensome legal and insurance navigation, and additional fertility support. Transgender men often fight stigma and isolation associated with being male-presenting and pregnant, while also managing gender dysphoria during pregnancy and early child care (Wingo, Ingraham & Roberts, 2018).
Preventive sexual and reproductive health care is also pertinent. Lesbian and bisexual women and transgender men are less likely to receive pap tests than their heterosexual and cisgender counterparts. Lesbian women may also have an increased risk of polycystic ovary syndrome (PCOS), although results are uncertain. Cisgender women who have sex with women, particularly young women with both male and female partners, may be at increased risk of human immunodeficiency virus (HIV) and sexually transmitted infections based on reported risk behaviors, including multiple sexual partners, substance use during sexual activity, and experiences with sexual coercion. Transgender men who have sex with men may also be at increased risk for HIV infection. Despite burgeoning interest and documented concerns, reproductive health research on LGBTQ populations often lacks input from LGBTQ individuals in priority setting (Cahill et al., 2015).
With all of these changes within out healthcare system, how do we stay ahead of technology and comprehensive documentation of our patient’s medical history and care? What does the future of electronic health record (EHR) platforms look like at healthcare organizations in terms of being inclusive? To answer that question, one needs to know what system the organization has implemented, the current version update, the clinical workflow, and the data collected around SOGI status. Additionally, each organization’s data requirements for SOGI status may vary depending on healthcare services rendered by the organization. System limitations, customized workflows, and end user training can vary widely across the healthcare arena and play a critical role in how the nation provides consistent quality care to the LGBTQ community (Wingo et al., 2018).
For many organizations that are on older versions of their EHR platform, generic information around the patient's SOGI status is collected at the point of registration or in the clinical application by nurses and physicians. In these older versions, it is rare to see the SOGI status information entered at the time of registration carry over to the clinical application for clinical staff to make medical decisions. From a health information management (HIM) perspective looking at quality patient data and patient safety concerns, having two points of entry for similar information can cause data integrity issues. These data discrepancies can have an impact throughout the continuum of care. Imagine if each provider or caregiver encountered during a hospital visit addressed you with the incorrect pronoun, and you had to explain yourself to each person. This does not create a welcoming visit for the patient (Thompson, Weathers & Karnik, 2016).
Looking forward, EHR platforms have begun to include several system enhancements to address data collection and integration issues for the LGBTQ population. It is important for HIM professionals to continue to work with their specific EHR vendor for future development and align business workflows based on new EHR functionality for more accurate, up-to-date data fields that allow better care of the entire patient population (White & Reisner, 2016).
Promoting Equality and Education of LGBTQ Issues
For years, the U.S.'s LGBTQ community has raised concerns about the privacy and security of sensitive personal identifying data collected throughout their healthcare visits. The following laws address privacy and security in some fashion for this patient population. The laws provide a floor for managing protected health information (PHI) and personally identifiable information. There are no laws that specifically address this population. But in practice, collection of this information is no different than when healthcare organizations started collecting HIV information. Consideration can be given to additional protections if determined operationally appropriate within the individual healthcare organization (Thompson et al., 2016).
The HIPAA Privacy Rule states: SOGI or history of transition-related procedures may constitute PHI;
- hospitals and other covered entities should provide training to physicians, employees, and contractors to ensure compliance
- a covered entity must have in place and apply appropriate sanctions against members of its workforce who violate the entity's policies and procedures and the HIPAA Privacy Rule
- hospitals may use or disclose a patient's PHI to a family member, other relative, close friend, or any other person the patient identifies; the law respects the patient's wishes on matters of privacy and confidentiality (Thompson et al., 2016).
The Patient Protection and Affordable Care Act of 2010 prohibits sex discrimination in any hospital or health program that receives federal funds. The Office for Civil Rights has explicitly stated that this prohibition extends to claims of discrimination based on gender identity. This is the first federal civil rights law to prohibit discrimination on the basis of sex in all health programs and activities receiving federal financial assistance. The final rule requires that all gender identities be treated equally in the healthcare they receive. It prohibits the denial of healthcare or health coverage based on an individual's sex, including discrimination based on pregnancy, gender identity, and sex stereotyping. The final rule also requires covered health programs and activities to treat individuals consistent with their gender identity (Thompson et al., 2016).
Healthcare professionals will continue to interact with multiple vulnerable populations. For some, this may come with additional tasks such as understanding the populations history, health considerations and effective communications skills. The LGBTQ community has faced healthcare discrimination and these patients continue to seek compassionate and comprehensive care. Taking the time to understand where patients are coming from will allow healthcare professionals to lead these patients to a healthy future.
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