Provider-Patient Issues for the LGBT Cancer Patient



Fig. 12.1.
Healthcare experiences by LGB and TG (transgender) people (n = 4916) [Adapted from Lambda Legal, 2010]





Heterosexist and Gender Normative Language and Policies


Heterosexism refers to deeply ingrained beliefs that everyone is, or should be, heterosexual. Gender normativity refers to beliefs that there are only two sexes, male and female, and that our gender derives from our sex at birth. These two belief systems are embedded in U.S. culture and also in healthcare institutional practices, from the written forms to the history-taking interviews to informal interactions with patients and their families. LGBT patients encounter these beliefs throughout their navigation of the healthcare system. The forms often do not allow for recording one’s personal sexual or gender identities, nor do they allow for identification of one’s partner or families. Patients have to make a decision whether to disclose at this point (many would prefer to wait and see how open-minded the provider seems to be) or to lie. Later on, a provider may discuss their health history and progress since the last visit, often in a rushed manner. Rarely does this process allow LGBT patients to raise issues of concern or allow healthcare providers to signal their acceptance of LGBT patients. If the patient does experience discrimination or mild harassment, does the agency have a policy that includes sexual orientation and gender identity that would allow their complaints to be taken seriously? Is the healthcare provider aware of the policy?


Partners and Families




Laura is a 58 year-old single lesbian with advanced breast cancer. She is about to enter a hospice wing of a hospital, and requests that her social network, a circle of 5 women, including two ex-lovers, all be equally included in her care and able to visit at any time of the day or night. One of her social support system overheard a nursing assistant at the nurses’ station say to a colleague, “It’s not natural to have such a close relationship with an ex. Do you think they all sleep with each other?” One of the members of the circle was told by the daughter of another patient to stay away from her mother, who was “deeply religious” and should not have to look at gay people when she was dying.

LGBT patients may have strained relationships or even been rejected by their families of origin, so “families of choice” become the main support for their care. Many LGBT patients have had experiences of partners being ignored, excluded, or treated badly by healthcare providers [28].


LGBT Community Support


McGregor and colleagues [32] reported that lesbians with breast cancer had greater distress if they had higher internalized homophobia scores. Internalized oppression is the result of believing negative stereotypes about one’s own group, and consists of shame, guilt, and fear related to one’s sexuality or gender. These negative emotions are an additional source of stress that impacts wellbeing and the capacity to cope with challenging physical illnesses. Boehmer and coauthors [33] reported that women who self-identified as lesbian or bisexual had better coping strategies for cancer than women with same-sex partners who did not self-identify. Presumably, this is related to having a more supportive community if one is out and identified with the LGBT community. Durso and Meyer [24] also reported that those with stronger ties to LGB community were more likely to disclose to healthcare providers. Having the support of a community may be a significant predictor of adjustment and well-being for LGBT individuals (and for reducing internalized homophobia/biphobia/transphobia).

Sinding et al. [34] studied community support of lesbians with breast and gynecologic cancers, and reported that some of their participants had the perception that lesbians get better support from their partners and communities than heterosexual women. Some, though, noted that they felt isolated and had difficulty talking openly about their cancer. “Cancer scares the shit out of people and they don’t know what to do with you” (p. 69), said one participant. Some respondents felt that lesbians’ involvement in the HIV/AIDS community support/care movements in the 1980s made them more prepared to deal with other illnesses in the community.

Many LGBT survivors do not feel welcome or understood in mainstream support groups, and transgender survivors have been especially challenged. Most of the few LGBT-specific cancer support groups across the country are in major metropolitan areas. Access to 24/7 online support is an important small step toward providing encouragement and assistance for those living with a cancer diagnosis. Recently the National LGBT Cancer Network received funding to set up free online support groups for lesbian, bisexual and transgender breast cancer survivors (See http://​cancer-network.​org/​support_​groups_​for_​survivors). Another online support service for LGBT folks comes from The National LGBT Cancer Project (See http://​lgbtcancer.​com).


Diversity Within LGBT Communities


There is a dearth of information about LGBT people’s healthcare experiences in general, but particularly about experiences with cancer care. There seems to be more research about lesbians than any other group, but it is difficult to know if lesbians’ experiences are the same as gay, bisexual, or transgender people. It is also highly likely that there are differences among LGBT people’s experiences with cancer care based on age, race, ethnicity, level of education, income, geographic location, and many other factors as well. Differences such as these are found among heterosexuals and it is likely that a similar diversity exists within LGBT communities. This section offers some suggestions about the diversity of experiences that LGBT cancer survivors might have.


Lesbian/Bisexual Women

Some authors speculate that lesbian and bisexual women have very different experiences, partly depending on whether they are currently partnered with men, women, or both. Research needs to consistently separate out individuals by their sexuality and gender to study the nuances of experience [35, 36]. To study the possible differences among breast cancer survivors by lesbian or bisexual orientation, Boehmer and colleagues [37] used Massachusetts Cancer Registry data to find sexual minority women with breast cancer histories, and then supplemented the sample by convenience sampling from across the U.S., resulting in 180 participants: 161 lesbian and 19 bisexual women. This study identified few differences by sexual identity. The bisexual women had a higher level of education, but the groups were similar on other demographic, cancer-clinical presentation and treatment variables, body image, sexual functioning, and side effects of treatment. There were no differences in physical or mental health outcomes. However, ­lesbians were more likely to trust their physicians, be partnered (and have a female partner), live with a partner, and be open about their sexuality. Having a partner was associated with better physical health, and having a female partner was associated with better mental health. In another report from the same sample of cancer survivors [38], fewer of the lesbian women treated with mastectomy chose to have breast reconstruction (3 % of lesbians, 15 % of heterosexual and 17 % of bisexual women), but more were on mood stabilizers and anti-depressant medications (40 % sexual minority and 21 % heterosexual). On the other hand, there was no difference in current anxiety or depression by sexual orientation. Arena and colleagues [39] reported that lesbians had fewer concerns about sexuality after a breast cancer diagnosis than did heterosexual women, and were also less concerned about physical appearance changes, experienced less disruption of their sexual relationships, had less denial, and demonstrated more positive coping strategies. Other studies report that quality of life is not different for sexual minority women with cancer compared with heterosexual women [40, 41].


Gay/Bisexual Men

Thomas and colleagues [42] interviewed 9 gay and one bisexual man with prostate cancer and reported that their sexual identities were often wrapped up in sexual practices, so that altered sexual functioning after prostate cancer affected self-worth and increased performance anxiety. Most thought of themselves as “damaged goods,” although one participant thought that cancer was an opportunity to redefine his sexuality from a genital focus to a greater focus on intimacy. The men were generally unhappy with the communication with their urologists, who they perceived as lacking in empathy and poor at caring for emotional needs, but described their relationship with their primary healthcare providers as more satisfactory. Because of sample size limitations more research is needed to explore these findings. Some gay/bisexual men appear to fragment their healthcare by seeking sexual health care separately from primary care to avoid embarrassment, shame, or lack of respect from their primary care doctors [43].


Transgender Patients

Healthcare providers appear to be the least prepared to deal with healthcare issues of transgender patients, and transgender patients may be the most likely to experience overt discrimination in healthcare settings [44, 45], although we could not find any studies particularly about cancer treatment. The following case study highlights some of the issues that trans women might face.



Emily is a 66 year old woman, who was born male and transitioned to a female role and body 25 years earlier. She has throat cancer and was hospitalized for symptom management during radiation therapy. She became a source of deep curiosity and gossip among the hospital staff. Every day a different caregiver helped her with her bath, and there was a constant stream of housekeepers, residents, medical students, and dieticians gawking at her as they passed by in the hallway. No one was blatantly discriminatory or harassing to her, but she often heard giggles from the nurses’ station when she was escorted to therapy in a wheelchair. One day, she was handed her chart to hold while she was transported to the clinic, and she found that all the formal documents referred to her as “he” and “male.” Her birth name was used on many of the recent progress reports rather than her legally changed new name. When she pointed this out to her physician, he said “our system has no option for transgender.” She gently replied that she was now a woman, but the doctor said, “You cannot change your DNA. That is still male.”

In conclusion, research on LGBT people’s experiences with cancer care are very limited, but it appears that LGBT patients and their families encounter some of the same types of discrimination, harassment, and even violence that they may experience in the outside world.



Healthcare Microaggressions and Cancer Care


It is no longer socially acceptable to engage in overtly discriminatory and rejecting ways in healthcare settings, like hospitals and clinics [46], however, a minority of the population, including some healthcare providers, still harbor overtly negative attitudes. Hate crimes based on sexual orientation and gender identity increased in the late 2000s whereas racial, ethnic, and religious-based hate crimes remained steady [47]. Some LGBT patients will continue to encounter blatant differential treatment such as refusals of care and inappropriate care. However, the majority will experience a more subtle form of discrimination. Sue and colleagues [48] called the subtle daily assaults on minority peoples “micro-aggressions.” They happen daily, briefly, and are covert, and people with minority identifications must learn to cope with these ongoing assaults to their well-being, creating a condition of daily stress (called minority stress). Homophobia, biphobia, transphobia, heterosexism, and gender normativity are so deeply imbedded in the culture that microaggressions are often committed by well-intentioned people, who may not be consciously aware of the impact of their words or behaviors. In this section, we explore how microaggressions manifest in healthcare settings and how they may affect LGBT cancer patients and their families. Nadal and coauthors [49] described three major categories of microaggressions that we will use to structure this section, and supplement it with examples drawn from the literature about LGBT patient experiences as well as research on microagressions experienced in the mental health/therapy arena [50].


Micro-assaults

include name-calling and more overt discrimination. This is the most blatant, and perhaps intentional of the varieties of microaggressions. Examples: a nurse refuses to care for an LGBT patient, a physician during rounds refers to the “faggot” with colon cancer, hospital staff rotate going to a patients’ room to see the “freak” transgender patient, a patient’s same-sex partner is told he is not welcome during visiting hours or must leave during health-care decision-making sessions. A nurse sends a chaplain to visit with an LGBT patient because he is concerned that the patient is “going to hell if she does not repent.” These behaviors are all denounced by hospital patient rights policies and the Joint Commissions’ charge for respectful quality care for all. Even though a minority of healthcare providers engage in these damaging behaviors, if others do not stand up and challenge them, they can do great damage to the reputation of a clinic, hospital, or other healthcare setting.


Micro-insults

include rudeness, condescension, and insensitivity, and may reflect ignorance rather than intentional differential treatment, or may reflect discomfort when working with patients/clients/coworkers who are different. Examples: not using the patient’s preferred name and pronouns (e.g., calling a transgender woman, “he”), disrespecting or ignoring a partner of a patient, or implying that one’s sexuality or gender are choices. Sometimes micro-insults might be based on believing stereotypes about LGBT people, such as thinking that all gay men are hypersexual or all older lesbians are asexual, or believing that bisexual people are confused about their sexuality, or that transgender people are mentally ill. A common assumption that many healthcare providers make is that LGBT identity is associated with disease or disorder, particularly sexually transmitted infections, or that the patient’s sexuality or gender identity is the root of every health problem with which the LGBT patient presents. Sometimes micro-insults are conveyed in body language rather than in overt comments or behaviors. A subtle distancing or reluctance to touch a patient, a hesitant tone of voice, or lack of eye contact may signal to patients that the healthcare provider is uncomfortable with them.


Micro-invalidations

include denials of discrimination, trivializing of one’s worries about differential treatment, and dismissal of past experiences as unimportant. Examples: No place to record one’s same-sex partner on a form (invalidates the relationship); no place to record one’s sexual orientation or gender identity on a form or in an oral history with a healthcare provider (invalidates the importance of the identity); statements such as “Now that this state has legalized same-sex marriage, there is no more discrimination against LGBT people,” or “How dare you compare your issues to racial civil rights,” or “we are here to discuss your cancer treatment; your sexual orientation is irrelevant.” Another example is telling victims of a hate crime or discrimination that they are being “too sensitive.” Some LGBT people have been told that their “blatant” appearance or behavior was the cause of the violence or discrimination. Telling someone who says, “I think I might be transgender,” that they are just going through a phase invalidates the enormous courage it takes to reveal such personal information. Another way that healthcare providers might invalidate a patient’s experience is to say that their clinic or hospital is inclusive because they have one openly LGBT employee.


Consequences of Microaggressions


Several studies have shown that the stress resulting from discrimination and harassment, whether overt or subtle, intentional or from well-meaning sources, affect both physical and mental health over time [51, 52]. They result in a perceived need for hyper-vigilance in healthcare settings. Dealing with visiting policies, sharing of information and decision-making, and just being physically located in a setting where one stands out, requires much energy (stigma management) from the LGBT patient. That degree of monitoring of one’s environment is physically and mentally taxing to the patient who must also deal with painful, tiring, uncomfortable cancer treatments. Cancer patients should not have to waste precious energy worrying how their partner or family is being treated.


Recommendations



Individual Healthcare Providers


In one study a transgender man [53] described what health care providers need to do: “you need to prepare yourself for different types of people walking in your office” and “the last thing I wanted was to be a training case for a practitioner who has never provided care for a transgender person before” (p. 26). Vulnerable patients who are dealing with their own mortality should not be placed in the role of primary educator for their healthcare providers. There are many resources available now for healthcare provider education, as shown in Tables 12.1 and 12.2. Reygan and D’Alton [54] reported on a brief (50 min) training for healthcare providers who were involved with oncology and palliative care, and showed that even this brief introduction to terminology, healthcare issues, and oncology/palliative care issues of LGB patients resulted in significant shifts in comfort with terminology, confidence in providing LGB care, and increased knowledge. Perhaps the most important things that healthcare providers can do is to (1) examine their own belief systems and consider how they might impact their patients; (2) inquire compassionately about sexual and gender identities and family structures as part of comprehensive patient-centered care; (3) do not make assumptions that sexual or gender identities are related to any specific health or sexual behaviors; and (4) learn how to take a sexual history without judgment or discomfort. Some issues that need to be addressed in a sexual history include sexual and gender identities, sexual abuse history, contraception when necessary, current and history of risky sexual activities, and current concerns about sexual functioning. If recreational drugs have been linked with sexual activities, this is important to consider, as it may affect pharmacological treatments and may require treatment for both the sexual and drug dependence. For those who are hesitant about taking a full sexual history, a simple question/comment such as “Many patients undergoing cancer treatment (or some specific treatment) have questions about how this might affect their sexual lives or relationships with partners. Do you have any concerns about this that we should discuss?” For more guidance on sexual history taking, see the CDC (http://​www.​cdc.​gov/​STD/​treatment/​SexualHistory.​pdf).
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Oct 28, 2016 | Posted by in ONCOLOGY | Comments Off on Provider-Patient Issues for the LGBT Cancer Patient

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