Maturitas 80 (2015) 421–425
Contents lists available at ScienceDirect
Maturitas journal homepage: www.elsevier.com/locate/maturitas
The aging population: Imperative to uncouple sex and gender to establish “gender equal” health care Gloria A. Bachmann a,∗ , Brianna Mussman b a Department of Obstetrics, Gynecology & Reproductive Sciences, Rutgers Robert Wood Johnson Medical School, 125 Paterson Street, CAB 2104, New Brunswick, NJ 08901, USA b Robert Wood Johnson University Hospital, One Robert Wood Johnson Place, New Brunswick, NJ 08901, USA
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Article history: Received 31 December 2014 Received in revised form 14 January 2015 Accepted 19 January 2015 Keywords: Transgender Gender nonconforming community Transgender discrimination Transgender healthcare
a b s t r a c t Aim: The transgender community has long been marginalized in society. As the world’s population ages, gender-unbiased health services for this growing population, with age-related chronic illnesses, will be essential. To optimally eliminate hurdles that trans individuals often confront when requesting services, it appears judicious to eliminate the strict and antiquated definition of what constitutes “normal” female and “normal” male. Methods: A review of literature on transgender medicine on PubMed over the last five years was conducted. Results: Existing statistics indicate that unacceptable bias and discrimination are occurring, making trans patients less likely to seek care. There are emerging initiatives that address the transgender and gender non-conforming population. Ongoing needs include defining what constitutes “gender equal,” understanding the continuum of gender identity, and establishing and implementing guidelines for gender equal counseling and care. Conclusions: With the routine practice of defining sex at birth and equating sex with gender in the health care setting, the transgender patient encounters multiple barriers to accessing and acquiring health care services. These strict gender labels appear to preclude the institution of gender equal care. Care templates on gender equal patient encounters should be implemented to better address transgender health needs in a non-biased manner. © 2015 Elsevier Ireland Ltd. All rights reserved.
1. Introduction Medicine is practiced in efforts to help people, maintain health, and manage disease, regardless of gender. However, medical teaching has long reinforced the gender binary, labeling individuals with non-conforming gender identities and non-conforming physical anatomies as “abnormal” [1]. The same was formerly true about sexual preferences: the heterosexual-as-the norm and homosexual-as-abnormal were once what the medical community recognized with regard to sexual orientation. Research suggests that sexual preference itself is not binary; bisexuality is being openly reported as a sexual option by more individuals and is gaining acceptance and visibility [2]. Clearly, neither sexual preferences nor gender identity are necessarily “one or the other,” [3] and that
∗ Corresponding author. Tel.: +1 732 235 7628/7633; fax: +1 732 235 7035; mobile: +1 732 354 8461. E-mail address: [email protected] (G.A. Bachmann). http://dx.doi.org/10.1016/j.maturitas.2015.01.009 0378-5122/© 2015 Elsevier Ireland Ltd. All rights reserved.
the restrictive “male or female” binary as assumed and practiced by most health care providers must be reexamined. As culture understands new definitions of gender [3] – that may or may not correspond to biological sex – clinical practice should also adapt to remove restrictive labels and optimally accommodate and support all patients. Creating and following standards of care for transgender and gender non-conforming patients that are inclusive across all specialties and practices, and not only trans specialty practices or specific practitioners that are geared to serving this population, should be implemented [4]. Since members of health care teams at many levels are entrusted with personal details about patients’ bodies and experiences, it follows that evaluation, management, and follow up of each patient should stress the dictum of patient comfort and acceptance regardless of sexual preference and gender identity, and to provide comprehensive care that is not substandard [5]. This paper reviews current sex and gender definitions and existing health care delivery norms for transgender patients, proposes the term ‘gender equal’ as the standard of care for all individuals and summarizes possible options for improvement.
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2. Methods A search and review of literature on transgender and gender nonconforming healthcare on PubMed within the last five years was conducted. Search terms used included “transgender,” “medicine,” “health,” “care,” “gender,” “nonconforming,” “electronic medical records,” “standards,” “Australia,” “Germany, “India, “international,” “Sweden,” “Bangkok,” “NIH,” and the combinations thereof. Reference lists of articles whose full text was retrieved also were searched to find additional relevant sources in the given time frame. Supplemental materials, such as government documents were retrieved through a Google search of the relevant term combination.
Table 1a Sex and gender terminology. Sex vs Gender (i.e. Natal Sex vs Gender Identity):
Transgender
FTM or FtM
MTF or MtF
3. Barriers to trans-patient care Data suggest that one of the major obstacles in trans patient care has been the limited education of practitioners in current definitions, concepts, terminology, and in clinical practice templates that addresses issues prevalent in the trans population [6–9]. As early as the 1940s Alfred Kinsey noted that a person’s sexual orientation and preferences could not be defined only as strictly heterosexual or homosexual. Rather, there was a continuum [10]. This same concept of a range of normal should be applied to gender identity.
Cisgender
Gender nonconforming
Gender Neutrality
4. Terms and concepts There are several terms and concepts that surround the trans population. Health care facilities as well as the entire health care team should be familiar with current terminology and definitions (Table 1). Gender equal is a new term introduced in this paper. This term is defined as a non-biased approach to persons (or patients) that considers all genders to be of equal status, regardless of gender identity and expression and regardless of sex at birth. Similar to “gender-unbiased,” but emphasizing the equality of recognition, treatment, and care for the entire range of male, female, and otherwise identified patients as well as between transgender and cisgender patients. Unconscious biases find their way into personal and professional interactions, but defining all clinical encounters as gender equal works to eliminate that bias in clinical-patient interactions. The new DSM-5 also recognizes gender identity in individuals as an option and not a stigmatized mental illness [14]. No longer is “gender identity disorder” a diagnosis nor is gender nonconformity a diagnosable pathology in itself [15]. Now “gender dysphoria” refers to significant distress due to the difference between someone’s gender identity and biological sex. People who do experience gender dysphoria and desire intervention can be treated with psychotherapy, hormonal therapy, and surgical procedures solely or in combination to reach a point where they feel less of the identitybody disconnect. Not all gender nonconforming patients may be experiencing gender dysphoria, and therefore may need no interventions. As well, not all patients who experience gender dysphoria want to or are able to fully transition (i.e. have full gender reassignment surgery). 5. International considerations In most countries trans persons have limited access to health care, which decreases their ability to receive adequate medical treatment. Reports suggest that transgender persons in Asia and the Pacific receive compromised care due to overwhelming prejudice, harassment, and violence directed toward them, as noted
Genderqueer or Genderfluid
Sex refers to the biological categorization of a person based on genetics and/or genitalia, while gender refers to how a person views how they fit (or do not fit) into society’s expectations and gender roles based on biological sex [11] Has many definitions, but is generally defined as someone who identifies as a gender other than the one they were assigned at birth. Often abbreviated trans or trans* (which includes anyone who “transcends” the gender binary) [11] Female-to-male transgender person; someone whose natal sex was assigned female at birth who desires to transition (or has transitioned) to be male. Also: Trans man [11,12] Male-to-female transgender person; someone whose natal sex was assigned male at birth who desires to transition (or has transitioned) to be female. Also: Trans woman [11,12] Counterpart of transgender (from scientific “cis” meaning same), indicating a person’s gender aligns with the one they were assigned at birth an “umbrella” term that may refer to all persons who see themselves outside or between the gender binary or in any way not conforming to traditional gender definitions The concept that people can be referred to without gendered language in an effort to remove social stigmas and expected gender roles. Pronouns such as “he” and “she” are avoided, in favor of neutral pronouns such as “they” and terms such as “the patient” or “the client Concepts that challenge the existence of a gender binary (male and female) and allow people to identify as a fluid mix of the binary genders or neither of them; some of the myriad ways people could identify under the “gender nonconforming” umbrella [13]
in a recent review “Lost in Transition: Transgender People, Rights and HIV Vulnerability in the Asia-Pacific Region” [16]. This report was released by the UN Development Programme and the Asia Pacific Transgender Network. As the report highlights, in Asia and the Pacific as well as many other parts of the world, trans people are caught on “the stigma-sickness slope” in which stigma and discrimination lead to inadequate health care and risky behaviors, eventually sloping toward vulnerability to sickness and possible death. However, progress has occurred, as exemplified by legislation enacted in Australia, Germany, India and Pakistan. These countries have stopped the adverse and unwarranted intrusion into the personal rights of individuals and have given them the ability to identify their gender beyond female and male. On a related note, having the option for newborns with ambiguous genitalia to have indeterminate sex recorded on birth certificates, as enacted in Germany, will hopefully prevent ‘normalizing’ operations before the age of consent and allow these individuals to personally decide their gender and whether surgical intervention is warranted for them or is actually a mutilation of their body. A recent example of guaranteeing the personal rights of every citizen regarding gender is noted in recent legislation from Australia. This country has overhauled its federal policies on gender identity and gender designation. In 2009, Australia’s Human Rights and Equal Opportunity Commission released a paper [17] giving its recommendations to Australia’s federal government following an inquiry enacted in 2008. Fifteen recommendations were reported, with supporting information for these recommendations that were based on research including online responses, consultations, and calls for responses to an issues paper. The paper urged the
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government to extend its equal treatment and nondiscriminatory policies to transgender and gender-nonconforming citizens. Four years later, in 2013, the government released the Australian Government Guidelines on the Recognition of Sex and Gender [18]. The document outlined the government’s response to the previous investigation in both amended policies and new legislation. This response: • Differentiated clearly between sex and gender - Indicated that gender information is what the government generally desires - Sex information is only to be collected if medically necessary • Established three gender options for legal documents o M (Male) - F (Female) - X (Indeterminate/Intersex/Unspecified) • Gave clear and flexible requirements of documentation to change gender designation - Formatted examples of acceptable authentication from medical professionals These progressive and inclusive policies were enacted in 2013 and compliance will be required by 2016 [18]. This example of a strong Australian national policy has set a standard for all other countries to follow with gender-inclusive federal policies. In the US, initiatives addressing the needs of lesbian, gay, transgender, bisexual and intersex individuals seriously commenced with the 2011 report by the Institute of Medicine (IOM) [19]. The IOM reviewed the clinical needs and research gaps of LGBTI individuals and found extremely limited data. In response to this report, the National Institutes of Health (NIH) has commenced supporting and developing initiatives that are addressing the needs of LGBTI individuals [20]. 6. Promoting the continuum of gender identity The acceptance and implementation of gender-neutrality is embodied in an educational model being implemented in some preschools in Sweden [21]. The schools remain gender-neutral by using only the gender-neutral Swedish pronoun “hen” [22] to refer to others and to students, while avoiding enforcing gendered playtime activities. This model came to practice after teachers in one school videotaped each other interacting with children and examined their biases [21]. The schooling technique comes as a part of a larger movement for gender equality and neutrality in the country of Sweden, providing a model that removes gender bias even from children’s early stages of development. This type of educational model, if more universally adopted, could help combat the restrictive gender binary system and ease the transition to gender equal rights and care. 7. Inclusive templates of care Inclusive templates of care that reduce stigma and diminish barriers to trans patients are generally limited. As surveys indicate [9,23,24] and interviews reiterate [25], transgender and gendernonconforming people are not made to feel accepted and have to confront exclusive practices and discrimination. In addition, although the National Transgender Discrimination Survey Report on Health and Health Care (2010) [9] found that the majority of trans and gender non-conforming respondents in their US surveys were “out” about their gender identity to some or all of their doctors, transgender individuals overall received suboptimal health care. In this survey, 19% of trans respondents had been refused treatment altogether due to their transgender or
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non-conforming identity, while 24% had been denied equal treatment in either hospitals or doctor’s offices. In some racial subgroups, the refusal of treatment was even higher (with up to 36% of trans American Indians having been denied care due to their gender status). Twenty-eight percent of trans respondents had been verbally harassed in a doctor’s office, hospital, or other medical setting, 2% had been physically attacked in a medical setting, and 28% of respondents had postponed or avoided necessary medical care even when they were sick or injured due to fear of discrimination [9]. Another clinical aspect of care for transgender patients is whether or not they wish to “out” their gender identities to their medical providers, given that this study [9] also found that 23% of fully “out” patients were denied care as compared to 15% of patients who were not “out” or only partly “out”. There are few quantitative studies on trans patients’ experiences in healthcare settings [9,23] and even fewer papers that deal with the cultural and interpersonal aspects [7,26]. Even in peer reviewed papers, there is scant information on ways the health care team can best ensure that trans patients are made to feel safe and that they will receive the same care as other patients [5]. Though trans-knowledgeable healthcare personnel are absolutely needed [6,8], it is also necessary to have trans-sensitive personnel who also can support trans patient care [27]. 8. Adverse behaviors and practices The few papers that surveyed trans and gender nonconforming people about discrimination they encountered did so quantitatively for the most part without reporting what form the discrimination took. Kosenko et al. [28] did include specific, biased behaviors that trans patients had experienced, such as: physicians using incorrect pronouns in addressing them, comments about the patient’s gender identity, commenting on how well the patient was passing, attempting to dissuade patients from transitioning, refusal to meet or make appointments, denial of treatments, the clinician being rough toward them during an examination, and mocking, belittling, name-calling comments being directed at them. Some practitioners’ behaviors, the study [28] found, such as fidgeting, staring, or avoiding eye contact were all identified as more subtle signals to the patient that the provider had negative feelings toward transgender patients. 9. Supportive behaviors and practices An important clinical aspect of care is that a person’s gender identity has no correlation with their sexual identity or orientation, or other aspects of their sexual health [5,9,26]. It is also important to note that a patient who engages in certain behaviors may or may not engage in others. Although some data state that transgender individuals have a higher HIV risk, this is true, as in the general population, based on behaviors – specific questions help determine risk factors for each individual regardless of gender identity [7]. Finally, a person’s gender identity does not always indicate what physical parts they may have. If the patient has or is in the process of transition, questions concerning what specific procedures they have had should be asked to ascertain if they have parts that need to be screened regularly (i.e. breast tissue, a vagina/cervix, a prostate) [8,29]. Although there are recognized barriers to adequate trans care from the physician side, as documented qualitatively by Snelgrove et al. [30], practices can work to eliminate them. Based on the research of Snelgrove et al. and Coren et al. [7], clinicians can take proactive steps to enhance clinical encounters with trans patients as listed in Table 1 and, as listed in Table 2, changes, that can be implemented in health care settings to make intake procedures
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Table 1b Optimal care: clinician guidelines. Refer to more trans-accepting practice if unable to provide optimal care Refer to practice with more experience if not knowledgeable in specific trans patient care areas (such as requested surgery) Maintain current list of trans accepting/affirming resources/practitioners in area such as which specialists have necessary experience, which practices are open and supportive and what community resources are available Maintain education on trans healthcare, especially WPATH’s clinical guidelines [12]; understand what constitutes different transition procedures [5] and the changes in the DSM-V depathologizing gender identity [14,15] Recognize institutional barriers and difficulties: insurance companies and labs may refuse screenings, procedures, or treatments based on gender-specific criteria, not on body parts present [4,29,30] and other practices/practitioners may refuse to care for trans patients. Also, the office/facility electronic medical system may not have simple data input for preferred name and/or gender [31,32]
Table 2 Optimal care: intake procedures. If biological sex is required with intake history, questions should read “What is your biological sex? Male, Female, Intersex”. If gender is required, question should read, “How do you define your gender? Male, Female, Trans” When calling in waiting area, on the phone, and booking patients, preferred name and not Ms. or Mr. (even if that name is not on their photo ID or insurance) should be used [7,33] In EMR, system’s coding to designate nickname/preferred name and preferred gender and flag to ensure that all users of the program are made aware of preferences should be used [4,31,32,34]. If no fields available, follow a standard protocol of where information about pronouns/preferred name is stored (in space easily visible to all program users) [31] Ask which pronouns the patient prefers: “What are your preferred pronouns? he, she, they, none, or another pronoun?” [26,33] Ask which pronouns the patient prefers: “What are your preferred pronouns? he, she, they, none, or another pronoun?” [26,33] Use gender-neutral terms when asking about sexual experiences, “partners” for example, unless the patient uses other language (mirror their terms) [7] Leave room for open-ended answers to avoid making patients feel judged and to avoid excluding any of their experiences Ask questions about past sexual assault or coercion; MTF individuals especially have a higher incidence of violence against them [9]
more inclusive. For specific care issues, especially those dealing with endocrinology, a specialist may be required for treatment, but general effects (Table 3) can impact care in any type of practice. In an excellent resource that reviews the psychological and social adjustment of the aging trans population, the importance of inquiring about the point in the life cycle at which the trans patient transitioned is noted. For those who transition early, their needs are usually not as great as those who transition later. In the older individual who transitioned later in life, in addition to dealing with their regret of living in a generally unfulfilled manner, the practitioner must also assist the patient with common age related medical conditions, such as impaired hearing, vision and sensorium. This deterioration in sensorium detracts from the emotional and social adjustment of the older trans patient [35]. One other important point for all practitioners is the need for them to recognize and treat aging trans patients in long-term care facilities and convalescent homes as well as in ambulatory and inpatient settings [35]. 10. Support of professional societies In addition to legislative efforts, it is important that the professional societies also widely support diminishing barriers, supporting education and standing up for gender equality in all aspects of trans patient care. In this regard, the World Association for Sexual Health (WAS), has made significant strides in supporting personal sex and gender choice and conveying this to practitioners world wide [36]. WAS recently updated their Declaration of Sexual Rights that should be a template for all professional
Table 3 Endocrinology care: possible hormonal effects. Patients who are taking hormone therapy may be experiencing effects or side effects [8,26] Trans men (FTM) may take testosterone therapeutically. Known effects include: Increased acne Increased Amenorrhea facial/body hair Clitoromegaly Male pattern Increased libido hair loss Deepening of the voice Increased Redistribution muscle mass of fat One unknown side effect of testosterone therapy is if it increases risk for uterine or ovarian cancers; hysterectomies can and often are performed as a preventative measure Trans women (MTF) may take estrogen and an antiandrogen therapeutically. Known side effects include: Decreased libido Decreased skin Redistribution of fat oiliness Breast development (peaks after 2 years) Decreased spontaneous erections Decreased muscle mass Decreased facial/body hair The effects of these hormone treatments generally decrease fertility [5] Review patients’ future reproductive desires, with options including sperm banking, oocyte and embryo freezing, and adoption as part of pre-transition counseling Understand desired and adverse effects, the appropriate screenings, and expected body/cycle changes [5] Understand what reactions to hormones are normal, to isolate and highlight symptoms that could come from other sources/pathologies aside from the hormone treatment
societies to do likewise. Included in this WAS document are several important aspects related to sexuality and gender, among them, it: • “recognizes that persons’ sexual orientations, gender identities, gender expressions and bodily diversities require human rights protection” • “recognizes that all types of violence, harassment, discrimination, exclusion and stigmatization are violations of human rights, and impact the wellbeing of individuals, families and communities” 11. Conclusion Sex and gender are not always synonymous. Although a patient may describe a discrepancy, it does not mean that they want to change/transition their sex to match their gender or that they meet the criteria for gender dysphoria. More important is acceptance of a range of gender Identities which will support the provision of gender equal health care, especially as the population ages and this cohort of individuals will of necessity have greater interactions with the medical community. The antiquated binary system of gender identity should be abandoned in the clinical setting and appropriate and comprehensive gender equal health care be directed to every patient. Health care should not be substandard because of the gender choice of the individual, which in many clinical settings is still occurring. Gender equal health care has to be the priority of clinicians and the legal rights of the individual in all ambulatory, emergency, inpatient settings and long term care facilities. Just as the quality of medical care today is assessed on many parameters such as length of hospital stay, readmission rates, infection rates and emergency room visits, clinical care settings should also be assessed on their clinical templates which should mandate that gender equal care be provided to all patients. Education of practitioners and the health care team on trans patient health also should go hand in hand with establishing gender equal clinical templates of care. In addition, more research must be directed to the care and needs of the transgender and gender non-conforming population, especially the aging trans population, in whom data
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are scant. Legislative efforts in this regard for overall equal status of all persons are also critical imperatives, and countries should use models that have been enacted in countries such as Germany and Australia. Professional societies and federal agencies should continue to move this initiative of gender equal education, acceptance, and care forward. Contributors Dr. Gloria A. Bachmann and Bri Mussman contributed to the research and writing of this manuscript. Competing interests There no competing interests in this research. Funding There was no funding provided for this research endeavor. References [1] Wiseman M, Davidson S. Problems with binary gender discourse: using context to promote flexibility and connection in gender identity. Clin Child Psychol Psychiatry 2012;17(4):528–37, http://dx.doi.org/10.1177/1359104511424991. [2] Denizet-Lewis B. The scientific quest to prove bisexuality exists. TIME Mag Online 2014. Available at: http://nyti.ms/1qYslEl. [3] Steinmetz K. The transgender tipping point. TIME Mag 2014;183(22):38–46. [4] Roberts TK, Fantz CR. Barriers to quality health care for the transgender population. Clin Biochem 2014;47(10–11):983–7, http://dx.doi.org/ 10.1016/j.clinbiochem.2014.02.009. [5] Unger CA. Care of the transgender patient: the role of the gynecologist. Am J Obstet Gynecol 2014;210(1):16–26, http://dx.doi.org/10.1016/ j.ajog.2013.05.035. [6] Stroumsa D. The state of transgender health care: policy, law, and medical frameworks. Am J Public Health 2014;104(3):31–8, http://dx.doi.org/ 10.2105/AJPH.2013.301789. [7] Coren JS, Coren CM, Pagliaro SN, Weiss LB. Assessing your office for care of lesbian, gay, bisexual, and transgender patients. Health Care Manag (Frederick) 2011;30(1):66–70, http://dx.doi.org/10.1097/HCM.0b013e3182078bcd. [8] Gardner IH, Safer JD. Progress on the road to better medical care for transgender patients. Curr Opin Endocrinol Diabetes Obes 2013;20(6):553–8, http://dx.doi.org/10.1097/01.med.0000436188.95351.4d [accessed on 22.07.14]. [9] National Gay and Lesbian Task Force Foundation. National Transgender Discrimination Survey – Report on Health and Health Care. Published October 13; 2010. Available at: http://www.thetaskforce.org/downloads/reports/ reports/ntds report on health.pdf [accessed on 22.07.14]. [10] Kinsey AC, Pomeroy WB, Martin CE. Sexual behavior in the human male. Philadelphia: W.B. Saunders; 1948. p. 636–59. [11] American Psychological Association Committee on Lesbian, Gay, Bisexual, and Transgender Concerns Office and Public and Member Communications. Answers to your questions about transgender people, gender identity, and gender expression; 2011. Available at: http://www.apa.org/topics/sexuality/ transgender.pdf. [12] Coleman E, Bockting W, Botzer M, et al. Standards of Care for the Health of Transsexual, Transgender, and Gender-Nonconforming People, Version 7. Int J Transgend 2011;13:165–232, http://dx.doi.org/10.1080/ 15532739.2011.700873. [13] Cruz TM. Assessing access to care for transgender and gender nonconforming people: a consideration of diversity in combating discrimination. Soc Sci Med 2014;110:65–73, http://dx.doi.org/10.1016/j.socscimed.2014.03.032. [14] American Psychiatric Association. Highlights of changes from DSM-IV-TR to DSM-5. Available at: http://www.psychiatry.org/File%20Library/Practice/ DSM/DSM-5/Changes-from-DSM-IV-TR–to-DSM-5.pdf [15] American Psychiatric Association. DSM-5 Fact Sheets: Gender Dysphoria. http://www.psychiatry.org/File%20Library/Practice/DSM/DSM-5/DSM-5Gender-Dysphoria.pdf
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Maturitas journal homepage: www.elsevier.com/locate/maturitas
The aging population: Imperative to uncouple sex and gender to establish “gender equal” health care Gloria A. Bachmann a,∗ , Brianna Mussman b a Department of Obstetrics, Gynecology & Reproductive Sciences, Rutgers Robert Wood Johnson Medical School, 125 Paterson Street, CAB 2104, New Brunswick, NJ 08901, USA b Robert Wood Johnson University Hospital, One Robert Wood Johnson Place, New Brunswick, NJ 08901, USA
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Article history: Received 31 December 2014 Received in revised form 14 January 2015 Accepted 19 January 2015 Keywords: Transgender Gender nonconforming community Transgender discrimination Transgender healthcare
a b s t r a c t Aim: The transgender community has long been marginalized in society. As the world’s population ages, gender-unbiased health services for this growing population, with age-related chronic illnesses, will be essential. To optimally eliminate hurdles that trans individuals often confront when requesting services, it appears judicious to eliminate the strict and antiquated definition of what constitutes “normal” female and “normal” male. Methods: A review of literature on transgender medicine on PubMed over the last five years was conducted. Results: Existing statistics indicate that unacceptable bias and discrimination are occurring, making trans patients less likely to seek care. There are emerging initiatives that address the transgender and gender non-conforming population. Ongoing needs include defining what constitutes “gender equal,” understanding the continuum of gender identity, and establishing and implementing guidelines for gender equal counseling and care. Conclusions: With the routine practice of defining sex at birth and equating sex with gender in the health care setting, the transgender patient encounters multiple barriers to accessing and acquiring health care services. These strict gender labels appear to preclude the institution of gender equal care. Care templates on gender equal patient encounters should be implemented to better address transgender health needs in a non-biased manner. © 2015 Elsevier Ireland Ltd. All rights reserved.
1. Introduction Medicine is practiced in efforts to help people, maintain health, and manage disease, regardless of gender. However, medical teaching has long reinforced the gender binary, labeling individuals with non-conforming gender identities and non-conforming physical anatomies as “abnormal” [1]. The same was formerly true about sexual preferences: the heterosexual-as-the norm and homosexual-as-abnormal were once what the medical community recognized with regard to sexual orientation. Research suggests that sexual preference itself is not binary; bisexuality is being openly reported as a sexual option by more individuals and is gaining acceptance and visibility [2]. Clearly, neither sexual preferences nor gender identity are necessarily “one or the other,” [3] and that
∗ Corresponding author. Tel.: +1 732 235 7628/7633; fax: +1 732 235 7035; mobile: +1 732 354 8461. E-mail address: [email protected] (G.A. Bachmann). http://dx.doi.org/10.1016/j.maturitas.2015.01.009 0378-5122/© 2015 Elsevier Ireland Ltd. All rights reserved.
the restrictive “male or female” binary as assumed and practiced by most health care providers must be reexamined. As culture understands new definitions of gender [3] – that may or may not correspond to biological sex – clinical practice should also adapt to remove restrictive labels and optimally accommodate and support all patients. Creating and following standards of care for transgender and gender non-conforming patients that are inclusive across all specialties and practices, and not only trans specialty practices or specific practitioners that are geared to serving this population, should be implemented [4]. Since members of health care teams at many levels are entrusted with personal details about patients’ bodies and experiences, it follows that evaluation, management, and follow up of each patient should stress the dictum of patient comfort and acceptance regardless of sexual preference and gender identity, and to provide comprehensive care that is not substandard [5]. This paper reviews current sex and gender definitions and existing health care delivery norms for transgender patients, proposes the term ‘gender equal’ as the standard of care for all individuals and summarizes possible options for improvement.
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2. Methods A search and review of literature on transgender and gender nonconforming healthcare on PubMed within the last five years was conducted. Search terms used included “transgender,” “medicine,” “health,” “care,” “gender,” “nonconforming,” “electronic medical records,” “standards,” “Australia,” “Germany, “India, “international,” “Sweden,” “Bangkok,” “NIH,” and the combinations thereof. Reference lists of articles whose full text was retrieved also were searched to find additional relevant sources in the given time frame. Supplemental materials, such as government documents were retrieved through a Google search of the relevant term combination.
Table 1a Sex and gender terminology. Sex vs Gender (i.e. Natal Sex vs Gender Identity):
Transgender
FTM or FtM
MTF or MtF
3. Barriers to trans-patient care Data suggest that one of the major obstacles in trans patient care has been the limited education of practitioners in current definitions, concepts, terminology, and in clinical practice templates that addresses issues prevalent in the trans population [6–9]. As early as the 1940s Alfred Kinsey noted that a person’s sexual orientation and preferences could not be defined only as strictly heterosexual or homosexual. Rather, there was a continuum [10]. This same concept of a range of normal should be applied to gender identity.
Cisgender
Gender nonconforming
Gender Neutrality
4. Terms and concepts There are several terms and concepts that surround the trans population. Health care facilities as well as the entire health care team should be familiar with current terminology and definitions (Table 1). Gender equal is a new term introduced in this paper. This term is defined as a non-biased approach to persons (or patients) that considers all genders to be of equal status, regardless of gender identity and expression and regardless of sex at birth. Similar to “gender-unbiased,” but emphasizing the equality of recognition, treatment, and care for the entire range of male, female, and otherwise identified patients as well as between transgender and cisgender patients. Unconscious biases find their way into personal and professional interactions, but defining all clinical encounters as gender equal works to eliminate that bias in clinical-patient interactions. The new DSM-5 also recognizes gender identity in individuals as an option and not a stigmatized mental illness [14]. No longer is “gender identity disorder” a diagnosis nor is gender nonconformity a diagnosable pathology in itself [15]. Now “gender dysphoria” refers to significant distress due to the difference between someone’s gender identity and biological sex. People who do experience gender dysphoria and desire intervention can be treated with psychotherapy, hormonal therapy, and surgical procedures solely or in combination to reach a point where they feel less of the identitybody disconnect. Not all gender nonconforming patients may be experiencing gender dysphoria, and therefore may need no interventions. As well, not all patients who experience gender dysphoria want to or are able to fully transition (i.e. have full gender reassignment surgery). 5. International considerations In most countries trans persons have limited access to health care, which decreases their ability to receive adequate medical treatment. Reports suggest that transgender persons in Asia and the Pacific receive compromised care due to overwhelming prejudice, harassment, and violence directed toward them, as noted
Genderqueer or Genderfluid
Sex refers to the biological categorization of a person based on genetics and/or genitalia, while gender refers to how a person views how they fit (or do not fit) into society’s expectations and gender roles based on biological sex [11] Has many definitions, but is generally defined as someone who identifies as a gender other than the one they were assigned at birth. Often abbreviated trans or trans* (which includes anyone who “transcends” the gender binary) [11] Female-to-male transgender person; someone whose natal sex was assigned female at birth who desires to transition (or has transitioned) to be male. Also: Trans man [11,12] Male-to-female transgender person; someone whose natal sex was assigned male at birth who desires to transition (or has transitioned) to be female. Also: Trans woman [11,12] Counterpart of transgender (from scientific “cis” meaning same), indicating a person’s gender aligns with the one they were assigned at birth an “umbrella” term that may refer to all persons who see themselves outside or between the gender binary or in any way not conforming to traditional gender definitions The concept that people can be referred to without gendered language in an effort to remove social stigmas and expected gender roles. Pronouns such as “he” and “she” are avoided, in favor of neutral pronouns such as “they” and terms such as “the patient” or “the client Concepts that challenge the existence of a gender binary (male and female) and allow people to identify as a fluid mix of the binary genders or neither of them; some of the myriad ways people could identify under the “gender nonconforming” umbrella [13]
in a recent review “Lost in Transition: Transgender People, Rights and HIV Vulnerability in the Asia-Pacific Region” [16]. This report was released by the UN Development Programme and the Asia Pacific Transgender Network. As the report highlights, in Asia and the Pacific as well as many other parts of the world, trans people are caught on “the stigma-sickness slope” in which stigma and discrimination lead to inadequate health care and risky behaviors, eventually sloping toward vulnerability to sickness and possible death. However, progress has occurred, as exemplified by legislation enacted in Australia, Germany, India and Pakistan. These countries have stopped the adverse and unwarranted intrusion into the personal rights of individuals and have given them the ability to identify their gender beyond female and male. On a related note, having the option for newborns with ambiguous genitalia to have indeterminate sex recorded on birth certificates, as enacted in Germany, will hopefully prevent ‘normalizing’ operations before the age of consent and allow these individuals to personally decide their gender and whether surgical intervention is warranted for them or is actually a mutilation of their body. A recent example of guaranteeing the personal rights of every citizen regarding gender is noted in recent legislation from Australia. This country has overhauled its federal policies on gender identity and gender designation. In 2009, Australia’s Human Rights and Equal Opportunity Commission released a paper [17] giving its recommendations to Australia’s federal government following an inquiry enacted in 2008. Fifteen recommendations were reported, with supporting information for these recommendations that were based on research including online responses, consultations, and calls for responses to an issues paper. The paper urged the
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government to extend its equal treatment and nondiscriminatory policies to transgender and gender-nonconforming citizens. Four years later, in 2013, the government released the Australian Government Guidelines on the Recognition of Sex and Gender [18]. The document outlined the government’s response to the previous investigation in both amended policies and new legislation. This response: • Differentiated clearly between sex and gender - Indicated that gender information is what the government generally desires - Sex information is only to be collected if medically necessary • Established three gender options for legal documents o M (Male) - F (Female) - X (Indeterminate/Intersex/Unspecified) • Gave clear and flexible requirements of documentation to change gender designation - Formatted examples of acceptable authentication from medical professionals These progressive and inclusive policies were enacted in 2013 and compliance will be required by 2016 [18]. This example of a strong Australian national policy has set a standard for all other countries to follow with gender-inclusive federal policies. In the US, initiatives addressing the needs of lesbian, gay, transgender, bisexual and intersex individuals seriously commenced with the 2011 report by the Institute of Medicine (IOM) [19]. The IOM reviewed the clinical needs and research gaps of LGBTI individuals and found extremely limited data. In response to this report, the National Institutes of Health (NIH) has commenced supporting and developing initiatives that are addressing the needs of LGBTI individuals [20]. 6. Promoting the continuum of gender identity The acceptance and implementation of gender-neutrality is embodied in an educational model being implemented in some preschools in Sweden [21]. The schools remain gender-neutral by using only the gender-neutral Swedish pronoun “hen” [22] to refer to others and to students, while avoiding enforcing gendered playtime activities. This model came to practice after teachers in one school videotaped each other interacting with children and examined their biases [21]. The schooling technique comes as a part of a larger movement for gender equality and neutrality in the country of Sweden, providing a model that removes gender bias even from children’s early stages of development. This type of educational model, if more universally adopted, could help combat the restrictive gender binary system and ease the transition to gender equal rights and care. 7. Inclusive templates of care Inclusive templates of care that reduce stigma and diminish barriers to trans patients are generally limited. As surveys indicate [9,23,24] and interviews reiterate [25], transgender and gendernonconforming people are not made to feel accepted and have to confront exclusive practices and discrimination. In addition, although the National Transgender Discrimination Survey Report on Health and Health Care (2010) [9] found that the majority of trans and gender non-conforming respondents in their US surveys were “out” about their gender identity to some or all of their doctors, transgender individuals overall received suboptimal health care. In this survey, 19% of trans respondents had been refused treatment altogether due to their transgender or
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non-conforming identity, while 24% had been denied equal treatment in either hospitals or doctor’s offices. In some racial subgroups, the refusal of treatment was even higher (with up to 36% of trans American Indians having been denied care due to their gender status). Twenty-eight percent of trans respondents had been verbally harassed in a doctor’s office, hospital, or other medical setting, 2% had been physically attacked in a medical setting, and 28% of respondents had postponed or avoided necessary medical care even when they were sick or injured due to fear of discrimination [9]. Another clinical aspect of care for transgender patients is whether or not they wish to “out” their gender identities to their medical providers, given that this study [9] also found that 23% of fully “out” patients were denied care as compared to 15% of patients who were not “out” or only partly “out”. There are few quantitative studies on trans patients’ experiences in healthcare settings [9,23] and even fewer papers that deal with the cultural and interpersonal aspects [7,26]. Even in peer reviewed papers, there is scant information on ways the health care team can best ensure that trans patients are made to feel safe and that they will receive the same care as other patients [5]. Though trans-knowledgeable healthcare personnel are absolutely needed [6,8], it is also necessary to have trans-sensitive personnel who also can support trans patient care [27]. 8. Adverse behaviors and practices The few papers that surveyed trans and gender nonconforming people about discrimination they encountered did so quantitatively for the most part without reporting what form the discrimination took. Kosenko et al. [28] did include specific, biased behaviors that trans patients had experienced, such as: physicians using incorrect pronouns in addressing them, comments about the patient’s gender identity, commenting on how well the patient was passing, attempting to dissuade patients from transitioning, refusal to meet or make appointments, denial of treatments, the clinician being rough toward them during an examination, and mocking, belittling, name-calling comments being directed at them. Some practitioners’ behaviors, the study [28] found, such as fidgeting, staring, or avoiding eye contact were all identified as more subtle signals to the patient that the provider had negative feelings toward transgender patients. 9. Supportive behaviors and practices An important clinical aspect of care is that a person’s gender identity has no correlation with their sexual identity or orientation, or other aspects of their sexual health [5,9,26]. It is also important to note that a patient who engages in certain behaviors may or may not engage in others. Although some data state that transgender individuals have a higher HIV risk, this is true, as in the general population, based on behaviors – specific questions help determine risk factors for each individual regardless of gender identity [7]. Finally, a person’s gender identity does not always indicate what physical parts they may have. If the patient has or is in the process of transition, questions concerning what specific procedures they have had should be asked to ascertain if they have parts that need to be screened regularly (i.e. breast tissue, a vagina/cervix, a prostate) [8,29]. Although there are recognized barriers to adequate trans care from the physician side, as documented qualitatively by Snelgrove et al. [30], practices can work to eliminate them. Based on the research of Snelgrove et al. and Coren et al. [7], clinicians can take proactive steps to enhance clinical encounters with trans patients as listed in Table 1 and, as listed in Table 2, changes, that can be implemented in health care settings to make intake procedures
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Table 1b Optimal care: clinician guidelines. Refer to more trans-accepting practice if unable to provide optimal care Refer to practice with more experience if not knowledgeable in specific trans patient care areas (such as requested surgery) Maintain current list of trans accepting/affirming resources/practitioners in area such as which specialists have necessary experience, which practices are open and supportive and what community resources are available Maintain education on trans healthcare, especially WPATH’s clinical guidelines [12]; understand what constitutes different transition procedures [5] and the changes in the DSM-V depathologizing gender identity [14,15] Recognize institutional barriers and difficulties: insurance companies and labs may refuse screenings, procedures, or treatments based on gender-specific criteria, not on body parts present [4,29,30] and other practices/practitioners may refuse to care for trans patients. Also, the office/facility electronic medical system may not have simple data input for preferred name and/or gender [31,32]
Table 2 Optimal care: intake procedures. If biological sex is required with intake history, questions should read “What is your biological sex? Male, Female, Intersex”. If gender is required, question should read, “How do you define your gender? Male, Female, Trans” When calling in waiting area, on the phone, and booking patients, preferred name and not Ms. or Mr. (even if that name is not on their photo ID or insurance) should be used [7,33] In EMR, system’s coding to designate nickname/preferred name and preferred gender and flag to ensure that all users of the program are made aware of preferences should be used [4,31,32,34]. If no fields available, follow a standard protocol of where information about pronouns/preferred name is stored (in space easily visible to all program users) [31] Ask which pronouns the patient prefers: “What are your preferred pronouns? he, she, they, none, or another pronoun?” [26,33] Ask which pronouns the patient prefers: “What are your preferred pronouns? he, she, they, none, or another pronoun?” [26,33] Use gender-neutral terms when asking about sexual experiences, “partners” for example, unless the patient uses other language (mirror their terms) [7] Leave room for open-ended answers to avoid making patients feel judged and to avoid excluding any of their experiences Ask questions about past sexual assault or coercion; MTF individuals especially have a higher incidence of violence against them [9]
more inclusive. For specific care issues, especially those dealing with endocrinology, a specialist may be required for treatment, but general effects (Table 3) can impact care in any type of practice. In an excellent resource that reviews the psychological and social adjustment of the aging trans population, the importance of inquiring about the point in the life cycle at which the trans patient transitioned is noted. For those who transition early, their needs are usually not as great as those who transition later. In the older individual who transitioned later in life, in addition to dealing with their regret of living in a generally unfulfilled manner, the practitioner must also assist the patient with common age related medical conditions, such as impaired hearing, vision and sensorium. This deterioration in sensorium detracts from the emotional and social adjustment of the older trans patient [35]. One other important point for all practitioners is the need for them to recognize and treat aging trans patients in long-term care facilities and convalescent homes as well as in ambulatory and inpatient settings [35]. 10. Support of professional societies In addition to legislative efforts, it is important that the professional societies also widely support diminishing barriers, supporting education and standing up for gender equality in all aspects of trans patient care. In this regard, the World Association for Sexual Health (WAS), has made significant strides in supporting personal sex and gender choice and conveying this to practitioners world wide [36]. WAS recently updated their Declaration of Sexual Rights that should be a template for all professional
Table 3 Endocrinology care: possible hormonal effects. Patients who are taking hormone therapy may be experiencing effects or side effects [8,26] Trans men (FTM) may take testosterone therapeutically. Known effects include: Increased acne Increased Amenorrhea facial/body hair Clitoromegaly Male pattern Increased libido hair loss Deepening of the voice Increased Redistribution muscle mass of fat One unknown side effect of testosterone therapy is if it increases risk for uterine or ovarian cancers; hysterectomies can and often are performed as a preventative measure Trans women (MTF) may take estrogen and an antiandrogen therapeutically. Known side effects include: Decreased libido Decreased skin Redistribution of fat oiliness Breast development (peaks after 2 years) Decreased spontaneous erections Decreased muscle mass Decreased facial/body hair The effects of these hormone treatments generally decrease fertility [5] Review patients’ future reproductive desires, with options including sperm banking, oocyte and embryo freezing, and adoption as part of pre-transition counseling Understand desired and adverse effects, the appropriate screenings, and expected body/cycle changes [5] Understand what reactions to hormones are normal, to isolate and highlight symptoms that could come from other sources/pathologies aside from the hormone treatment
societies to do likewise. Included in this WAS document are several important aspects related to sexuality and gender, among them, it: • “recognizes that persons’ sexual orientations, gender identities, gender expressions and bodily diversities require human rights protection” • “recognizes that all types of violence, harassment, discrimination, exclusion and stigmatization are violations of human rights, and impact the wellbeing of individuals, families and communities” 11. Conclusion Sex and gender are not always synonymous. Although a patient may describe a discrepancy, it does not mean that they want to change/transition their sex to match their gender or that they meet the criteria for gender dysphoria. More important is acceptance of a range of gender Identities which will support the provision of gender equal health care, especially as the population ages and this cohort of individuals will of necessity have greater interactions with the medical community. The antiquated binary system of gender identity should be abandoned in the clinical setting and appropriate and comprehensive gender equal health care be directed to every patient. Health care should not be substandard because of the gender choice of the individual, which in many clinical settings is still occurring. Gender equal health care has to be the priority of clinicians and the legal rights of the individual in all ambulatory, emergency, inpatient settings and long term care facilities. Just as the quality of medical care today is assessed on many parameters such as length of hospital stay, readmission rates, infection rates and emergency room visits, clinical care settings should also be assessed on their clinical templates which should mandate that gender equal care be provided to all patients. Education of practitioners and the health care team on trans patient health also should go hand in hand with establishing gender equal clinical templates of care. In addition, more research must be directed to the care and needs of the transgender and gender non-conforming population, especially the aging trans population, in whom data
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are scant. Legislative efforts in this regard for overall equal status of all persons are also critical imperatives, and countries should use models that have been enacted in countries such as Germany and Australia. Professional societies and federal agencies should continue to move this initiative of gender equal education, acceptance, and care forward. Contributors Dr. Gloria A. Bachmann and Bri Mussman contributed to the research and writing of this manuscript. Competing interests There no competing interests in this research. Funding There was no funding provided for this research endeavor. References [1] Wiseman M, Davidson S. Problems with binary gender discourse: using context to promote flexibility and connection in gender identity. Clin Child Psychol Psychiatry 2012;17(4):528–37, http://dx.doi.org/10.1177/1359104511424991. [2] Denizet-Lewis B. The scientific quest to prove bisexuality exists. TIME Mag Online 2014. Available at: http://nyti.ms/1qYslEl. [3] Steinmetz K. The transgender tipping point. TIME Mag 2014;183(22):38–46. [4] Roberts TK, Fantz CR. Barriers to quality health care for the transgender population. Clin Biochem 2014;47(10–11):983–7, http://dx.doi.org/ 10.1016/j.clinbiochem.2014.02.009. [5] Unger CA. Care of the transgender patient: the role of the gynecologist. Am J Obstet Gynecol 2014;210(1):16–26, http://dx.doi.org/10.1016/ j.ajog.2013.05.035. [6] Stroumsa D. The state of transgender health care: policy, law, and medical frameworks. Am J Public Health 2014;104(3):31–8, http://dx.doi.org/ 10.2105/AJPH.2013.301789. [7] Coren JS, Coren CM, Pagliaro SN, Weiss LB. Assessing your office for care of lesbian, gay, bisexual, and transgender patients. Health Care Manag (Frederick) 2011;30(1):66–70, http://dx.doi.org/10.1097/HCM.0b013e3182078bcd. [8] Gardner IH, Safer JD. Progress on the road to better medical care for transgender patients. Curr Opin Endocrinol Diabetes Obes 2013;20(6):553–8, http://dx.doi.org/10.1097/01.med.0000436188.95351.4d [accessed on 22.07.14]. [9] National Gay and Lesbian Task Force Foundation. National Transgender Discrimination Survey – Report on Health and Health Care. Published October 13; 2010. Available at: http://www.thetaskforce.org/downloads/reports/ reports/ntds report on health.pdf [accessed on 22.07.14]. [10] Kinsey AC, Pomeroy WB, Martin CE. Sexual behavior in the human male. Philadelphia: W.B. Saunders; 1948. p. 636–59. [11] American Psychological Association Committee on Lesbian, Gay, Bisexual, and Transgender Concerns Office and Public and Member Communications. Answers to your questions about transgender people, gender identity, and gender expression; 2011. Available at: http://www.apa.org/topics/sexuality/ transgender.pdf. [12] Coleman E, Bockting W, Botzer M, et al. Standards of Care for the Health of Transsexual, Transgender, and Gender-Nonconforming People, Version 7. Int J Transgend 2011;13:165–232, http://dx.doi.org/10.1080/ 15532739.2011.700873. [13] Cruz TM. Assessing access to care for transgender and gender nonconforming people: a consideration of diversity in combating discrimination. Soc Sci Med 2014;110:65–73, http://dx.doi.org/10.1016/j.socscimed.2014.03.032. [14] American Psychiatric Association. Highlights of changes from DSM-IV-TR to DSM-5. Available at: http://www.psychiatry.org/File%20Library/Practice/ DSM/DSM-5/Changes-from-DSM-IV-TR–to-DSM-5.pdf [15] American Psychiatric Association. DSM-5 Fact Sheets: Gender Dysphoria. http://www.psychiatry.org/File%20Library/Practice/DSM/DSM-5/DSM-5Gender-Dysphoria.pdf
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