Approach matters of cultural and gender diversity with “cultural humility” to give all your patients the best access to healthcare.
By Elizabeth Walton, MD
When it comes to providing demographic information about relationships, the choices facing a new patient have long been the same: Married, Single, Widowed, Divorced.
I’m a lesbian with a long-term partner. We have two children together. For years, I never knew which box to check because none applied to me.
More recently, practices began including “Partner” as one of the categories. I finally felt included, although the term still didn’t quite feel like it adequately characterized my relationship. As a result, I never felt as if I would be completely safe or even welcome at that practice.
When the federal marriage laws were expanded to include same-sex couples, my partner and I got married. I can now check a box on the form that correctly labels my relationship status, but it still leaves some gaps. More often than not, healthcare providers will assume I am married to a man.
My experience isn’t unique. Those first forms a patient fills out are essential indicators that telegraph what kind of care a patient might receive. For patients who are gay, lesbian, bisexual or transgender, practices that limit the categories to metronormative categories immediately impact the nature of the relationship between patient and doctor. If you don’t even exist on a form, it can be very scary to reveal this information about yourself to your doctor.
To illustrate the point, consider an experience I had as a college sophomore. I was hospitalized for severe abdominal pain. The surgeon asked me if I was sexually active. I said I was. She then asked if I was trying to get pregnant since I wasn’t using contraception. When I told her I wasn’t, the surgeon asked, “Then what are you using? A hope and a prayer?” I had to explain to her that I was not having sex with men. The trust between me and the doctor who was about to operate on me was greatly diminished.
Health equity is the attainment of the highest level of health for all people, and as physicians, we have made a commitment to provide excellent care to the person sitting across from us. When inequities exist, they result in health disparities for individuals, communities and global societies.
The increasing cultural, racial and ethnic diversity of the United States provides challenges and opportunities to physicians in all specialties. As physicians in the United States, we are hardwired to master a theoretically finite body of knowledge and completely “get it right.” This cultural norm among doctors doesn’t serve us well when it comes to issues of diversity and making our care appropriate for people from all walks of life.
It is time to allow us to approach matters of cultural and gender diversity with “cultural humility” as opposed to “cultural competence.” This opens the door for a lifelong commitment to self-evaluation and self-critique that, ultimately, will lead to a more inclusive practice and better healthcare.
Cultural humility does require the constant seeking of more information, especially among issues of gender and sexuality, which are rapidly evolving, especially among younger populations. In the U.S., about 9 million people (3.5 percent) identify as lesbian, gay or bisexual, but about 19 million (8.2 percent) have acknowledged engaging in same-sex behavior. Estimates about the transgender population range from 0.1 percent to 0.5 percent.
Intersectionality and Terminology
LGBTQ individuals are not part of just one community. Many people carry multiple identities, and often they may have to choose one over another at different times, such as being African American or lesbian. Transgender people are very diverse and use many different terms to describe themselves. Language is being created while experiences develop and is changing over time. Some common terms include:
Sex refers to the presence of specific anatomy. It also may be referred to as “sex assigned at birth.”
Gender refers to attitudes, feelings and behaviors that a culture typically associates with masculinity or femininity.
Gender identity is a person’s internal sense of their gender as man, woman, a mix of both or neither. It is often a spectrum. It begins to develop by age 3 and may remain stable over time, change or be fluid. Since gender identity is internal, it may not be visible to others.
Sexual orientation is completely unrelated to gender identity. Sexual orientation is how a person identifies their physical and emotional attraction to others. It encompasses attraction, behavior and identity. It may fluctuate and shift over time. Gender expression is how one externally presents their gender identity through their behavior, mannerisms, speech patterns, dress, hairstyles, etc.
Gender variant/non-conforming refers to people whose gender expression is different from traditional expectations of their gender.
Transgender is an adjective used to describe people whose gender identity differs from their sex assigned at birth and can include male, female, neither or some combination.
Cisgender or cis is a person who is not transgender.
Transsexual may be considered an out-of-date term by some. It historically referred to individuals who had undergone medical/surgical treatment to transition to the opposite gender. This term may be used by some as a self-affirming description of themselves.
Genderqueer, gender fluid refers to someone who rejects distinct categories of male or female. They view gender as a spectrum that fluctuates.
Gender dysphoria is a DSM-5 diagnosis for individuals who have a strong and persistent cross-gender identification and a persistent discomfort with his or her sex, or sense of inappropriateness in the gender role of that sex.
Intersex refers to individuals whose physical bodies are not easily categorized as male or female (previously referred to as hermaphrodite). The number of intersex individuals is estimated between one in 1,000 to 4,500 newborns each year in the U.S. The DSM-V classifies these as Disorders of Sex Development. Since the term ‘disorder’ is used, it is considered pejorative by many and not used in the Intersex community. Intersex people are sometimes grouped with transgender people, but they are not the same. Some intersex individuals see themselves as part of the LGBTQ community; others don’t.
Queer is often used as a self-affirming and inclusive umbrella term for LGBT people, but can be considered an offensive term when used to cause harm.
Best Practices for the Best Healthcare
The LGBTQ community has unique health issues. Although many healthcare providers have developed practices specific to the healthcare needs of gay men, lesbians and bisexuals, fewer have had experience with transgender patients. As transgender people become more visible and are telling their healthcare providers, it’s important for us to develop some rudimentary procedures and best practices to help provide the best possible healthcare.
Trans patients often fear the medical community and delay seeking help for a problem. Many have been met with hostility from healthcare providers, sometimes being called the dehumanizing pronoun “it.” Others may have had physicians refuse to use their preferred name or pronoun.
A friend who is a psychiatrist told me about her experience with her trans son, who was born with female genitalia and raised as a girl until fourteen when he came out to his parents. My friend trained with her son’s pediatrician in residency. This doctor had treated him since birth. At their first appointment as a trans male, mother and son were met with extreme hostility. The doctor asked him inappropriate questions, such as whether he had sex with girls and whether he liked it.
The experience was very traumatic for both people. The mother later called a longtime friend and pediatrician to share this traumatic event. Her friend’s response was “Well, we don’t have those kinds of people in South Carolina.” Not surprisingly, it is not uncommon for patients to have to drive four or five hours to find a therapist or doctor capable and willing to treat trans patients in smaller cities and towns.
Clinicians have differing views on whether gender nonconformity should be regarded as a normal variation of gender expression, a medical condition or a psychiatric disorder. An alternate perspective views gender as a continuum from male to female, permitting a spectrum of gender identities with varying proportions of maleness and femaleness.
Nonconformity and Identity
It is impossible to predict with certainty whether gender nonconformity in an individual child will persist into adolescence or adulthood. Review of the evidence from prospective and retrospective follow-up studies suggests that gender dysphoria in prepubertal children persists into adolescence/ adulthood in a minority of children.
Children with consistent, persistent and insistent nonconforming behaviors and expression are more likely to maintain nonconforming gender identity in the long term. Demonstration of gender-nonconforming behaviors and expression reflects an innate preference of the child. Young children who are gender non-conforming generally are not gender dysphoric because they lack a clear understanding that their internal gender identity does not match their genitals.
The physical changes of puberty usually are exceptionally difficult for gender-nonconforming youth. The development of unwanted secondary sexual characteristics is described by many as a betrayal of one’s body, the final confirmation that they must live in an adult version of a body that is not reflective of their true self. Gender dysphoria that intensifies with the onset of puberty rarely subsides.
Trans people experience very high rates of stigma and discrimination that can lead to health disparities. It is legal in 28 states to fire an employee or deny housing because they are gay or transgender. The U.S. Department of Justice recently argued in front of an appeals court in New York that Title VII (of the Civil Rights Act of 1964 prohibiting discrimination on the basis of sex, race, color, national origin, and religion) did not provide protections to gay, lesbian or transgender workers.
Not surprisingly, LGBT people experience higher rates of substance abuse, HIV/STDs, tobacco use, violence, depression, suicidality and self harm. Forty one percent of trans people have attempted suicide (compared to 5.6-14.3 percent of U.S. adults). Trans women are murdered at a much higher rate than the general population. Trans women of color experience the highest.
Gender identity is not obvious by looking at someone. We should ask the same questions of all patients and not assume that people are heterosexual or cisgender, regardless of how they look.
1) Ask about current gender identity (preferably with a blank, instead of boxes to check)
2) Ask about sex assigned at birth
3) Ask what pronoun they use
4) Ask legal name
5) Ask preferred name
Clinical care should be based on an up-to-date anatomical inventory: Breasts, cervix, ovaries, penis, prostate, testes, uterus, vagina. Trans men still need pap smears if they have not had a hysterectomy. Trans women need prostate exams. The majority of trans individuals have not had surgery.
There is an abundance of erroneous information on the internet about trans people.
Physicians have an opportunity to provide more reliable information. For example, there are numerous reports about high rates of regret in patients who have had gender affirming surgery. More recent studies suggest that less than four percent of people who have gender-reassignment surgery regret it. Researchers have also found that the surgery dramatically reduces suicide rates among trans people.
For trans youth, family non-acceptance is a very strong risk factor for mental health issues. These youth are at a much higher risk of verbal and physical victimization, social isolation and peer rejection, school problems, depression and anxiety, self harm and suicidality, homelessness and sexual exploitation. Conversely, a recent article published in the journal Pediatrics presented a study that showed no difference in depression and only a small increase in anxiety in trans youth who are supported by their family compared to the general youth population.
In addition to conveying the strong evidence that family nonsupport is a very big risk factor for negative health impacts, the physician should address safety and bullying. It is very important to help the family advocate for the the child/ adolescent in the school system. It may be helpful or even necessary for you as the physician to write a letter of support and medical necessity for the child to express his/her gender identity. This can also be helpful to educate staff and students.
Make sure that referrals you make to other physicians are safe for the patient by doing your research. If you know that a physician has ethical or religious issues with LGBT individuals, you should not refer them to these people. Similarly, if you do not feel comfortable taking care of an LGBT individual, you should recognize your bias and refer to someone who is.
If in doubt, you can never go wrong using the ‘Golden Rule.’ Do unto others as you would have them do unto you.
Resources and Reading Materials
Make sure to have adequate resources for treating the LGBT community. Here is a list for yourself, your patients and their families.
• Human Rights Campaign: www.hrc.org
• Georgia Equality: www.georgiaequality.org
• Family Acceptance Project: www.familyproject.sfsu.edu
• Gay and Lesbian Medical Association: www.glma.org
• PFLAG (Parent/Friend/LGBT Support): www.pflag.org
• The Health Initiative: www.thehealthinitiative.com
• The Trevor Project: www.thetrevorproject.org
• Trans Youth Support Network: www.transyouthsupportnetwork.org
• Trans Youth Equality Foundation: www.transyouthequality.org
• I Am: Trans People Speak: www.transpeoplespeak.org
• Trans Student Educational Resources:www.transstudent.org
• National Center for Transgender Equality: www.transequality.org
• Trans Family Support Services: www.transfamilysos.org
• Trans Active: www.transactiveonline.org/index.php
• Queer Med: www.queermed.com
Teacher, Parent and Other Supportive Adult Titles
• 50 Ways of Saying Fabulous, Graeme Aitken, 2015 (20th anniversary edition)
• BALLS: It Takes Some to Get Some, Chris Edwards, 2016.
• Becoming Nicole: The Transformation of an American Family, Amy Ellis Nutt, 2016.
• Circle of Change (ebook), Laney Cairo, 2016.
• Helping Your Transgender Child, Irwin Krieger, 2011.
• Gender Born, Gender Made: Raising Healthy, Gender-Nonconforming Children, Diane Ehrensaft, 2011.
• Gender Dysphoria: An Essential Guide for Understanding and Dealing with Gender Identity Disorder. Eleanor Nye, 2015.
• Gender Outlaws: The Next Generation, Katie Bornstein, 2010.
• My Child is Transgender: 10 Tips for Parents of Adult Trans Children, Matt Kailey, 2012.
• My Daughter He: Transitioning with our Transgender Children, Candace Waldron, 2014.
• Principles of Transgender Medicine and Surgery, Randi Ettner, Stan Monstrey, & Eli Coleman, 2016.
• Rainbow Family Collection: Selecting and Using Children’s Books with Lesbian, Gay, Bisexual, Transgender, and Queer Content, Jamie Campbell Naidoo, 2012.
• Raising Ryland. Hillary Whittington, 2016.
• Safe Spaces: Making Schools and Communities Welcoming to LGBT Youth. Annemarie Vaccaro, Gerri August, & Megan S. Kennedy, 2011.
• Second Son: Transitioning Toward My Destiny, Love, and Life, Ryan K. Sallans, 2012.
• The Gender Creative Child, Diane Ehrensaft 2016.
• The Lives of Transgender People, Genny Beemyn & Susan Rankin, 2011.
• The Transgender Child: A Handbook for Families and Professionals.
• Stephanie Brill & Rachel Pepper, 2008.
• The Transgender Teen, Stephanie A. Brill & Lisa Kenney, 2016.
• Trans/Portraits: Voices from Transgender Communities. Jackson Wright.
• Shultz, 2015.
• Transgender Family Law: A Guide to Effective Advocacy, Jennifer L. Levi (Editor), 2012.
• Transgender Transition: Quick Start Guidebook, Sky Logan, 2016.
• Transitions of the Heart: Stories of Love, Struggle, and Acceptance by Mothers of Transgender and Gender Variant Children, Rachel Pepper, Ed., 2012