Metrics are the key to demonstrating the value of navigation along the cancer care continuum. Navigation metrics can demonstrate the benefit of the program to the institution and demonstrate the [ Read More ]
September 2016 VOL 7, NO 8
Let’s Talk about Sex, Gender, and Cancer: The Ethics of Bathroom and Cancer Surveillance
Mandi Pratt-Chapman, MA, Associate Center Director, Patient-Centered Initiatives & Health Equity, GW Cancer Center, Washington, DC
America has a new obsession with bathrooms. The media is blowing up with stories about transgender individuals being denied the right to pee in peace. After a series of schools required transgender individuals to use bathrooms reserved for their natal sex, on May 13, 2016, President Obama issued a directive that public schools allow transgender students to use the bathroom of their choice. So far 11 states have sued the government for this interpretation of Title IX, a law insisting schools that receive public funding cannot discriminate based on gender.1
Of course, this raises the question: why do we have separate facilities for men and women? Is it due to the age-old battle of whether to leave the toilet seat up or put it down? Nope. It turns out that segregated toilets arose out of national anxiety about a woman’s place in the world, specifically in the workplace. In 1877, Massachusetts was the first state to pass a law that required female workers to have a separate restroom. A recent Time article summarizes America’s historical need to protect women with separate toilet facilities.2
America is confused—why can’t women just be women and men, men? And if society is worried about transgender individuals making cisgender individuals uncomfortable in restrooms, why isn’t gay bathroom use an issue? Probably because we do not judge what we cannot see. The buzz about trans health offers an opportunity to examine our assumptions about sex and gender along with what we are comfortable noticing and not noticing when it comes to different lived experiences.
What does it mean to be a “woman” or a “man”? In what ways do race, ethnicity, culture, income, education, family, and other lived experiences come into play in our daily interactions and how we negotiate privilege or lack thereof? Do these dynamics change based on who we are interacting with in a particular moment? And where did our assumptions about gender and sex come from anyway? Before we are born, girl babies get pink gifts and boys get blue. Women are expected to be empathetic and men are expected to be logical. Our expectations of men and women in power are also drastically different. A recent Huffington Post article contrasted the T-shirt norm of Facebook’s Chief Executive Officer Mark Zuckerberg with Chief Operating Officer Sheryl Sandberg’s stylish and steep stilettos and polished executive dress.3 And then there is the presidential election.
You might, reasonably, be asking: What does all this have to do with cancer? We have reason to believe that sexual and gender minorities are at higher risk of cancer. LGBTQ (lesbian, gay, bisexual, transgender, and queer [and/or questioning]) individuals have higher alcohol and drug use than heterosexuals. Based on data from the National Alcohol Survey, 12% of lesbians and 17% of bisexual women were alcohol dependent compared with 2% of straight women.4 Persistent targeting from tobacco companies results in earlier smoking for LGBTQ youth.5 And lesbians and bisexual women have higher rates of obesity, another cancer risk factor.6
LGBTQ cancer patients also have special needs. Most notably, LGBT patients often carry disproportionate fear based on lived experiences of rejection. The National Transgender Discrimination Survey revealed that 57% of transgender individuals face family rejection, including 29% who had limits set on visiting their children.7 For transgender individuals who experience family rejection, homelessness, sex work, and suicidal ideation are double or triple the rate of those who have accepting families.7 In fact, of individuals experiencing rejection, 42% attempted suicide, and 26% reported drug or alcohol dependency.8 Another study showed that lesbian, gay, and bisexual individuals who have rejecting families are 8 times more likely to have attempted suicide and 6 times more likely to be depressed.9 Aging LGBT patients are particularly vulnerable. The film, Gen Silent, depicts the difficult position of elderly LGBT individuals who face discrimination and opt for going back into the closet rather than making caregivers uncomfortable or facing repeated awkward encounters.10
Understandably, LGBT patients worry that they will be mistreated or their safety compromised if their sexual orientation or gender identity is disclosed.11 These worries are not unfounded: for transgender women of color, life expectancy is only in the mid-30s due to suicide and homicide.12 Patient worries are further validated when patients sense that providers do not acknowledge their partner or ask questions out of curiosity rather than out of clinical concern. LGBT patient fears can be mitigated by providers offering welcoming, affirming language and including loved ones in clinical discussions. LGBT patients can be supported through LGBT-specific support groups. Provider and staff training can improve cultural sensitivity and smooth billing challenges for transgender individuals whose legal name and gender identity differ from those assigned at birth.
LGBT patients also have elevated health risks. Gay and bisexual men experience greater difficulty with sexual health after prostate cancer.13 HIV+ men who have sex with men have exponentially higher rates of anal cancer.14 Transgender men on testosterone may be deficient in many nutrients, and transgender women may diet excessively.6 These are just a few examples.
A major barrier to improving LGBTQ health outcomes is a lack of data. Generalizable comparisons of cancer incidence and mortality of LGBTQ individuals and their straight counterparts is limited by lack of data collection on sexual orientation in cancer registries. We know almost nothing about how best to care for transgender individuals with cancer given the challenges with accessing culturally sensitive healthcare and no known cancer-focused research studies (beyond case studies and hormonal studies looking at general impact of hormone use on trans individuals’ health).15 Most researchers and clinicians do not collect sexual orientation and gender identity data, so we cannot accurately assess cancer health disparities or address them. Because there are not enough individuals who identify as LGBTQ to draw generalizable conclusions in most studies, researchers continue to not collect data. And since doctors often don’t ask about sexual orientation or gender identity or track this information in medical records, and because very few healthcare providers have training on how to attend to LGBTQ-specific needs, our healthcare system cannot appropriately tailor care for these individuals. Hmmm. Catch-22.
I advocate for a return to basic ethics to guide us. There are 4 basic ethical principles:
- The Principle of Respect for Autonomy: We have an obligation to respect the decisions made by individuals about their own lives, including people’s sex partner, gender, and toilet preferences
- The Principle of Beneficence: We should try to bring about good and prevent harm. Having a welcoming place to go to the bathroom and a welcoming environment in our clinics would do clear good and prevent harm
- The Principle of Nonmaleficence: We have an obligation not to do harm or minimize harm if it is unavoidable. We cannot minimize harm if we do not acknowledge sexual and gender minorities in our clinical data systems and research studies. Although our standard statistical tests cannot make sense of what to do with information on small subpopulations in a meaningful way, the solution is not to ignore the facts but to find innovative ways to use this information to minimize harm
- The Principle of Justice: We should treat people fairly; this is impossible to do if we ignore or disparage important aspects of people’s identities
We can sustain differences in beliefs and values that are based on our own lived experiences, but we have an obligation to be ethical as health practitioners. Thus, it is important to be culturally sensitive to LGBTQ patients. Here are some tips:
- Include fields for inclusive sexual orientation, gender identity, legal name, preferred name, and preferred pronoun on patient intake forms
- Include sexual orientation, sex assigned at birth, and gender identity demographic fields for research studies
- Ask patients about their sexual orientation and gender identity—do not downplay these as unimportant components of a person
- Ask patients if they are comfortable having their sexual orientation and gender identity documented in the medical record. This can be very stressful for patients who are not out to family members, employers, or other clinicians. Discuss the pros and cons of registering this information in the medical record to improve clinical care
- Respect confidentiality of patients. It is not only a moral imperative, violating privacy could mean job loss or even death for patients who live in unaccepting environments
- For trans patients, do an anatomy inventory, so you know for what cancers your patients are at risk
- Be respectful, professional, and supportive
- Do not ask questions to satisfy your own curiosity
- Mirror the terms that the patient uses
- Create a safe environment by having information and brochures that reflect diverse sexual orientations and cultures
- Know resources that are culturally consonant that can help your patients
- Advocate for all patients’ rights, especially those who historically have not been heard
Specifically, for trans patients, remember that transwomen can have prostate cancer or breast cancer, and transmen can have cervical cancer or breast cancer depending on anatomy—so screening for these cancers is important. Providers should examine the sociocultural beliefs of their patients to optimize secondary prevention. Also, providers can support patients by learning about fears and unexpected benefit finding. For example, one transwoman who had major surgery for anal cancer wished for her vaginoplasty to be reconstructed15; and genderqueer breast cancer patients may find mastectomy gender-affirming.16
For more information, check out a new book edited by Ulrike Boehmer and Ronit Elk titled Cancer and the LGBT Community: Unique Perspectives from Risk to Survivorship,17 as well as the National LGBT Cancer Action Plan.5 For concrete recommendations on caring for LGBT individuals, see the Fenway Guide to Lesbian, Gay, Bisexual and Transgender Health.18 Trans-specific resources include the Center of Excellence for Transgender Health, the World Professional Association for Transgender Health, and GLMA: Health Professionals Advancing LGBT Equity. For patient resources, the National LGBT Cancer Network and CancerCare have free online support groups for LGBTQ cancer patients, as well as free information and resources.
By framing our social monitoring through an ethical lens, I advocate for a more inclusive, productive, and progressive shifting of our monitoring mania from bathrooms to intake forms, electronic health records, and research demographics. Isn’t letting a person choosing the partner, the pronoun, and the toilet of their choice the only ethical thing to do?
- Berman M, Balingit M. Eleven states sue Obama administration over bathroom guidance for transgender students. The Washington Post. www.washingtonpost.com/news/post-nation/wp/2016/05/25/texas-governor-says-state-will-sue-obama-administration-over-bathroom-directive/?utm_term=.7b7b910d0891. May 25, 2016.
- Rodan M. Why do we have men’s and women’s bathrooms anyway? Time. http://time.com/4337761/history-sex-segregated-bathrooms/. May 16, 2016.
- Peck E. Sheryl Sandberg’s shoes perfectly illustrate the hypocrisy of tech’s ‘casual’ dress code. The Huffington Post. www.huffingtonpost.com/entry/sheryl-sandberg-shoes_us_574f3845e4b0eb20fa0c988a. June 1, 2016.
- Drabble L, Midanik LT, Trocki K. Reports of alcohol consumption and alcohol-related problems among homosexual, bisexual and heterosexual respondents: results from the 2000 National Alcohol Survey. J Stud Alcohol. 2005;66:111-120.
- Burkhalter JE, Margolies L, Sigurdsson HO, et al. The National LGBT Cancer Action Plan: a White Paper of the 2014 National Summit on Cancer in the LGBT Communities. LGBT Health. 2016;3:19-31.
- Fredrikson-Goldsen KI, Hoy-Ellis CP, Brown M. Addressing Behavioral Cancer Risks from an LGBT Health Equity Perspective. In: Boehmer U, Elk R, eds. Cancer and the LGBT Community: Unique Perspectives from Risk to Survivorship. Springer International Publishing Switzerland; 2015.
- Grant JM, Motett LM, Tanis J, et al. Injustice at Every Turn: A Report of the National Discrimination Transgender Survey. Washington, DC: National Center for Transgender Equality and National Gay and Lesbian Task Force; 2011. www.thetaskforce.org/static_html/downloads/reports/reports/ntds_full.pdf.
- Klein A, Golub SA. Family rejection as a predictor of suicide attempts and substance misuse among transgender and gender nonconforming adults. LGBT Health. 2016;3:193-199.
- Ryan C, Huebner D, Diaz RM, et al. Family rejection as a predictor of negative health outcomes in white and Latino lesbian, gay and bisexual young adults. Pediatrics. 2009;123:346-352.
- Gen Silent. http://gensilent.com/. 2016.
- Mattocks KM, Sullivan JC, Bertrand C, et al. Perceived stigma, discrimination, and disclosure of sexual orientation among a sample of lesbian veterans receiving care in the Department of Veterans Affairs. LGBT Health. 2015;2:147-153.
- Vincent AR. State of Emergency Continues for Trans Women of Color. The Huffington Post. www.huffingtonpost.com/addison-rose-vincent/the-state-of-emergency-co_b_7981580.html. August 13, 2015.
- Rose D, Ussher JM, Perez J. Let’s talk about gay sex: gay and bisexual men’s sexual communication with healthcare professionals after prostate cancer [published online February 26, 2016]. Eur J Cancer Care (Engl).
- Agénor M. What Are the Numbers? The Epidemiology of Cancer by Sexual Orientation and Gender Identity. In: Boehmer U, Elk R, eds. Cancer and the LGBT Community: Unique Perspectives from Risk to Survivorship. Springer International Publishing Switzerland; 2015.
- Lombardi E, Banik S. Cancer Care Needs of Transgender, Transsexual, and Other Gender Nonconforming Populations. In: Boehmer U, Elk R, eds. Cancer and the LGBT Community: Unique Perspectives from Risk to Survivorship. Springer International Publishing Switzerland; 2015.
- Taylor ET, Bryson MK. Cancer’s margins: trans* and gender nonconforming people’s access to knowledge, experiences of cancer health, and decision-making. LGBT Health. 2016;3:79-89.
- Boehmer U, Elk R, eds. Cancer and the LGBT Community: Unique Perspectives from Risk to Survivorship. Springer International Publishing Switzerland; 2015.
- Makadon H, Mayer K, Potter J, et al. Fenway Guide to Lesbian, Gay, Bisexual and Transgender Health. 2nd ed. Philadelphia, PA: The Fenway Institute. American College of Physicians; 2015.
Navigators share the role of patient advocacy and patient empowerment by promoting patient rights, and the way of doing it is with the patient, not for the patient. Navigators should [ Read More ]