LGBT Discrimination in Healthcare

Photo for article on LGBT discrimination in healthcare:  a disposal surgical mask in the new LGBTQIA flag colors

"Discrimination in health care settings endangers LGBTQ people’s lives through delays or denials of medically necessary care." | Photo Credit: © Andrii / Adobe Stock

Originally published 2019-05-21. Updated 2023-07-11

"If you want to know how to prevent discrimination in LGBT healthcare look at the data" | Photo Credit: ©goldnetz / Adobe Stock

This article on LGBT discrimination in healthcare deals with sensitive information regarding people’s identities. Identities can be set in stone, fluid, or a work in progress. There is no wrong way to define one’s self. This article does not pretend to cover the full spectrum of possible identities, nor is the bypassing of any single identity meant as erasure or gate-keeping. 

This is just the beginning of a conversation that is desperately needed in health care. Identities and associations such as aro, poly, pan, demi, GNC, enbie, gender queer, or gender fluid, are all deeply valid—representation matters and there is always room for additional voices. It is not the intention of this article to define the entire spectrum of possible experiences, identities, or sexualities. This article periodically uses the terms “LGBT” and “GSM” to aid in the discoverability of the article.

LGBT discrimination in healthcare

What do you do when you’re a transwoman, and your doctor doesn’t realize you need a prostate exam?

What does end-of-life care look like if you’re a gay man?

What are the LGBTQ barriers to healthcare?

What do asexuals say when their gynecologist won’t believe they aren’t having sex?

Why is it that lesbians are 10 times less likely than heterosexual women to be given preventative health care (like mammograms or tests for ovarian or cervical cancer)—is it because they aren’t sleeping with men?

And, why is LGBT healthcare discrimination so entrenched?

Let’s discuss caring for LGBTQ patients in healthcare

The first-ever LGBT health report by the National Academy of Medicine was only published in 2011. It’s time we spoke more vocally about caring for LGBTQ patients' health care —and what that means.

We’re going to cover LGBT discrimination in healthcare, as well as a few rainbow health concerns that doctors aren’t talking about. We’re doing this in order to bring more focused awareness of the topic among cis-heterosexual people, and also for those who identify as a gender or sexual minority (GSM), so that they can discuss these concerns directly with their doctor or specialist so that they know what to look out for.

The first step to normalization is cognizance. Health examiners, along with their patients, may not have even considered some of the obstacles that GSM patients face, and LGBTQIA+folx might not know which exams they need to take, how to speak to physicians about their concerns, or the illnesses they’re more inclined towards due to a lack of preventative screenings and modern medical misinformation.

It was only 45 years ago that being homosexual stopped being classified as a mental illness — and similar identities are still struggling to be understood, validated, and freed from legal and medical misinterpretations. This article should not be used as a vehicle to oppress any single identity, but instead, as a vehicle to encourage understanding, body and health exploration, and to promote positive and useful conversations around health care for gender and sexual minorities identities—a badly underserved community in health care.

So, let’s get colorful.

I screen, you screen, we should all screen on this health scene

Some of the LGBT health care discrimination in medical care is obvious as soon as one walks into a doctor’s office. The average pre-consultation medical form and the general list of medical questions are the first hurdle for GSMs, where they often face immediate erasure or marginalization of gender identity or sexuality. But some of this erasure, especially facing the lesbian, transgender, and female bisexual and demi-sexual community, can be more insidious. It comes in the form of being seen, but not screened.

While not all women will have female-presenting genitals, ovaries, or breasts, many do—as do some men. And, for these folx, access to screenings for cervical cancer, ovarian cancer, and breast cancer are hurdles where the treatment is far from equal. GSM identities are under-represented on the patients’ lists for gynecologists and mammographers.

According to Barriers to Cervical Cancer Screening Among Lesbians (Tracey, et al., 2010), despite being the second most common cancer affecting women worldwide—one in 145 women in the U.S. alone will be diagnosed—50% of lesbians do not get regular Pap screenings at clinically recommended intervals to check for signs of cervical cancer. And, 10% of lesbians have never had a Pap smear at all. More troubling still, prevailing scientific thought belays a bias against lesbians, same-sex partnered women, and some transmen in this realm that may account for the disparity. Specifically, medical professionals shrug their shoulders and say, “Women who have sex with other women aren’t at risk of getting HPV, which causes cervical cancer, so they don’t need to be screened.” But is this really true?

Cumulative lifetime occurrences of HPV (a precursor to cervical cancer, but not a guarantee of getting it) is estimated between 70 to 80%. Popular pseudo-science says that lesbians and women who are not having sex with men should not have any exposure to HPV at all. But current data does not back that up—where it exists at all—and it will be no shock that very little research has been done on the subject. One study, by Marrazzo et al., published in the Journal of Infectious Diseases (Oxford University, 1998) found that 13 to 30% of women who have female-only sexual partners tested positive for HPV infection. This directly disputes the notion that lesbians are at a low risk for HPV contraction. Rates of abnormal Pap smears were also higher (at 80%) among lesbian patients than heterosexual ones, perhaps because of the heightened infrequency of screenings at all.

LGBT discrimination in cancer treatment

A recent June 2023 survey by the American Cancer Society reveals that a significant portion of individuals identifying as Lesbian, Gay, Bisexual, Transgender, and Queer/Questioning (LGBTQ+) who have been diagnosed with cancer or are survivors express apprehension about potential discrimination within healthcare environments. Alarmingly, over a third of these individuals have already encountered discrimination based on their sexual orientation or gender identity in healthcare settings. Moreover, a substantial 75% of those who faced such discrimination believe it has adversely affected the quality of their healthcare. Consequently, these concerns and instances of discrimination are hindering timely access to crucial cancer treatment, which is imperative for their survival.

Key Findings of the June 2023 survey:

  • A significant 50% of LGBTQ+ cancer patients and survivors surveyed express concern regarding potential discrimination in healthcare settings, with one in five expressing strong concerns.
  • Disturbingly, over one-third (37%) of respondents have encountered discrimination in a healthcare setting due to their sexual orientation or gender identity. Out of those affected, a considerable 75% feel that this discrimination has negatively impacted the care they received. Additionally, one in four (24%) reported that LGBTQ+ discrimination has created obstacles to receiving necessary care.
  • Approximately half (48%) of participants have opted not to disclose their sexual orientation or gender identity due to apprehensions regarding discriminatory effects on their care. Furthermore, over a quarter (26%) have avoided seeking healthcare altogether due to concerns about facing discrimination.
  • More than half (58%) express worry about the influence of the political climate on their access to healthcare, while 49% are concerned that healthcare providers might consider it too risky to treat them due to laws enacted in the states where these providers practice.
  • Black and Hispanic patients, as well as those residing in the Southern states, report the highest levels of experiences and concerns regarding anti-LGBTQ+ discrimination.

LGBT screening for cervical cancer

Lesbians develop invasive late-stage cervical cancer primarily due to a lack of screening, which is an easily preventable risk factor. Their avoidance of screenings can be attributed to both the prevailing cultural belief that this cancer is solely caused by male penetration and a general distrust of medical professionals.

According to the Health Belief Model, the likelihood of seeking help and preventive medicine is higher among patients who perceive themselves at risk of a particular condition and have trust in medical professionals. Lesbians, often considered low-risk due to their non-involvement in sexual activities with men, and facing discrimination in healthcare, tend to have less faith in doctors, leading to infrequent utilization of preventive care. However, recent data strongly supports that STIs are common in lesbians, with substantial evidence that transmission occurs through lesbian sexual contact. Similar challenges are also experienced by straight and bisexual transmen without gender reassignment surgery, as well as demi- and bisexual individuals.

Moreover, some symptoms associated with cervical cancer are framed within heteronormative assumptions. For example, irregular periods, which may already be altered or absent in female-to-male (FTM) individuals undergoing hormone therapy, and bleeding after penetrative intercourse, which may not occur in lesbian, bisexual, and other individuals' sexual interactions.

However, these are only a few of the symptoms related to cervical cancer. The failure to consider the experiences of gender and sexual minority (GSM) patients in symptomology contributes to higher mortality rates. Research has shown that lesbians face a greater risk of cervical cancer mortality due to delayed screenings and inadequate understanding of the disease, resulting in more advanced-stage diagnoses compared to their heterosexual counterparts.

"After breast and colorectal cancer, cervical cancer is considered to be the third most prevalent cancer in women."

Claire Curmi, Kath Peters & Yenna Salamonson

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LGBTQ sterotypes must be challenged to stop LGBT discrimination in healthcare. | Photo Credit: ©goldnetz / Adobe Stock

Lesbian and bisexual women are less likely to have a mammogram compared to heterosexual women

When it comes to mammograms, The Cancer Network points out the invisibility of lesbians and other GSMs: no data on sexual orientation is collected by national cancer registries, so no exact science can be applied to sexual minority groups the way it can with other minority and majority groups; nor can the government accommodate statistics which do not exist. Not knowing the prevalence and patterns of a type of cancer in a certain community makes it harder to discern risk and prevention.

However, in every location The Cancer Network surveyed across the U.S., lesbians reported a lower incidence of going for mammography screenings than their heterosexual counterparts.

A number of intertwined realities explain this:

  • Sexual minorities are less likely to have health insurance than heterosexual counterparts.
  • Perceived unwelcome of sexual minorities in doctors’ offices make GSMs less willing to go for check-ups in general.
  • ‘Provider ignorance,’ with invasive heteronormative medical forms and questions which make GSMs who go for a yearly check-up not wish to return for special check-ups.
  • Lesbians are much less likely than heterosexual women to feel doctors are experts on their reproductive health—especially since, for many, the term ‘reproductive health’ is in and of itself a misnomer.
  • On the whole, lesbians who did have yearly mammograms tended to be older, have higher incomes, and were majority Caucasian. Discrimination was the main reason lesbians noted for avoiding screenings, and a secondary reason was discomfort with disclosing their orientation to healthcare providers.

But this understandable avoidance could be more dangerous than avoidance would be for heterosexual women. According to Hart & Bowen (Sexual Orientation and Intentions to Obtain Breast Cancer Screening, Journal of Women’s Health, 2009), an emergent trend is that lesbians and bisexual women are at two to three times higher risk of breast cancer than heterosexual women. A number of factors are to blame for this.

First, there is a higher rate of smoking and obesity among lesbian and bisexual women (likely due to less pressure to conform to gender stereotypes in their communities). Similarly, lesbians and bisexual women are less likely to give birth; those who do, give birth to fewer children, and they are less likely to be on birth control pills—all protectants against female-genital-related cancers, which are bolstered by ovulation. Last, infrequent screenings mean that diseases are caught later and usually only after the development of overt symptomatology.

The Cancer Network findings were reconfirmed in a 2020 study that showed that black lesbian women appeared to have lower adjusted odds of mammography compared to their heterosexual counterparts.

"Lesbian and bisexual women are less likely to have a mammogram compared to heterosexual women"

Ovarian cancer: ovaries before brovaries

Ovarian cancer is the final example of this phenomenon. Though rare, accounting for only 4% of all cancers affecting women, it is the fourth most deadly form of cancer among women—often, because it is caught so late.

Again here, women who have given birth or taken birth control pills to aid with menstrual pain or prevent pregnancy have a lowered risk of ovarian cancer due to less ovulation. According to Share Cancer Support, this makes non-heterosexual women more vulnerable to certain types of cancers, including ovarian cancer. In addition, lesbians, female bisexuals, and transmen are less likely to go for full gynecological visits because of a perception of ‘less need to do so’ if they do not have a male partner. But male partners should never define female health—or anyone’s health, for that matter.

The best way that lesbians, transmen, and bisexuals, demi, and even ace women can combat these dangers is by making yearly visits to the gynecologist and having a yearly mammogram.

At the gynecologist, demand a Pap smear regardless of your sexual history, along with a general exam that can detect ovarian cancer. A comprehensive pelvic exam can help test for ovarian cancer. For something less invasive than a bimanual exam (bimanual and speculum exams show medical sexism for what it is: tests so ancient, bellicose, and painful, that they literally reek of the 1800s), you can request a transvaginal ultrasound.

Sadly, LGBT discrimination in healthcare in cancer care is pervasive. The only cancer screening one can suggest for this is to screen your local healthcare providers for a rational amount of empathy and awareness.

Killer side effects of transgender hormone therapy

FTMs should also take special care, as some forms of testosterone injections may increase the risk for ovarian cancer. But our trans sisters and brothers have a whole litany of screenings they are not being given access to, which deserves its own spotlight. When you search "dangers of taking testosterone" online, something puzzling happens: the entire first page doesn’t mention transmen. Instead, the results are all options for cis men who are low in testosterone. Even hormone therapy is heteronormative, it seems.

In general, hormone therapy for any transperson will be different. Folx will need to take dosages based on their physiology—there is no standard (and there shouldn’t be) when it comes to hormone therapy. This is because the therapy comes with an increased and significant risk if dosages are incorrect. Dosages should correspond to the body’s ability to metabolize them. Rarely discussed are the dangers of either rushing this process or going too slow; personalized physiology is badly needed in the field of hormone therapy.

According to the University of California’s Center for Transgender Care, there are a number of health hazards associated with hormone therapy, even when it is administered correctly. But, with proper screenings, these can be managed and avoided early on, should they occur.

For transmen, let’s present some vital screenings and other medical subjects to think about. The need for these will vary based on whether the transman is currently on hormone therapy or not, or if they have undergone genital reassignment surgery or not. All are equally valid, and no one stage defines the masculinity of a transman. If you are a transman reading this, you can think of which of these may directly apply to you.

  • Pregnancy, if you are having sex with non-transgender men. First, and important, transgender men can experience pregnancy, even when on testosterone (T) —though it’s rare, and testosterone may eventually render a transman infertile. If you think you may be pregnant or have begun hormone therapy and decide you want to father children, speak to a healthcare provider with cultural competence.
  • Ultrasounds. If you are bleeding or spotting well after your period has stopped during your hormone therapy, this could be a sign of a pre-cancerous condition of the uterine lining. It is important to keep note of spotting or bleeding and bring it up to your doctor. You may need a uterine scan if this continues to occur before or after a hysterectomy.
  • Periodic pelvic exams. The link between T-therapy and ovarian cancer is only just beginning to be studied—and ovarian cancer, once again, is usually discovered late-stage in all patients. It’s important to have a pelvic exam once a year, if possible within the constraints of time, insurance, and expenditure, to make sure overall ovarian health is in good standing.
  • Periodic mammograms. Screening for breast cancer is still important, even while on T or post-operation. Though cases of breast cancer in transmen post-operation are rare, it is not unheard of.

Testosterone therapy for transgender men

Transmen who are on or have taken testosterone are at a higher risk of diabetes, high blood pressure, heart disease, and high cholesterol than women and anyone doing estrogen hormone therapy. All men are at a higher risk for these issues.

Testosterone can also thicken the blood, which can increase the chances of stroke or other heart conditions. It is important to avoid dosages that are too high for your body’s metabolism. You should have periodic blood tests in tandem with your yearly physicals to make sure everything looks normal in the blood, and to keep watch over your liver and kidney function.

Monitor all hormone therapy closely, to guarantee you achieve a healthy result. For post-op hysterectomy patients, lower doses of hormones should be administered until the age of 50, to prevent osteoporosis. Also, taking too much testosterone may cause it to metabolize back into the body as estrogen, causing an increased risk of possible ovarian cancer and uterine lining issues.

For transwomen, LGBT discrimination in healthcare might be much the same, but what to look out for in your body is different. Like transmen, smaller dosages of hormones should be administered after an orchiectomy (removal of one or both testicles) or genital reassignment surgery, at least until the age of 50, to prevent osteoporosis.

For transwomen, there are three options for hormone therapy: estrogen, T-blockers, and progestogen. For those on estrogen, it is especially important to monitor for proper liver function and to do test for diabetes during routine blood testing. For transwomen over the age of 35 just beginning hormone therapy, and for smokers, injections are safer on these two fronts than pills.

For transwomen on T-blockers, it’s vital to note that common types of blockers can interact poorly with blood pressure medications and can cause issues such as chronic dehydration and kidney malfunction. Be sure to hydrate well while on a T-blocker, drink alcohol less frequently, and go for blood pressure check-ups. Potassium levels should also be checked often: some blockers can raise potassium levels to dangerous highs which, unchecked, can cause heart failure.

With estrogen in general, but especially progesterone, there is an elevated risk of breast cancer. So, mammograms, as well as prostate exams, are essential to ensuring the best preventative care. Breast cancer screenings should increase to yearly after three years on any form of estrogen, and prostate exams should still be performed regularly.

In general, very little research has been done for transfolx on the side effects of hormone therapy, and that research is even lesser when the hormone is estrogen (there’s some more everyday sexism for you). So, the unfortunate truth of the moment is that transfolx are being held responsible for their own health care above that of providers, much of the time.

The burden of these extra screenings, their costs both monetarily and in time, is no small thing. While this list is not meant to frighten, but instead empower—that in knowing our bodies we can avoid the pitfalls that medicine turns a blind eye to—the list can still be daunting. In addition to having to demand non-typical screenings that aren’t part of the heteronormative societal values, all LGBTQIA+ people are at higher risk of simply being deflected or outright refused by physicians—as are their families. The children of LGBTQIA+ parents face obstacles to even general practitioner offices at alarming rates.

LGBTQ barriers to healthcare screening include lower rates of health insurance; insurance policies that do not cover unmarried or domestic partners; lack of access to culturally competent service providers; and outright LGBT discrimination in healthcare, both explicitly legalized and not. Many GSMs are turned away from health care providers for reasons of religion or preference; a desire that is becoming more codified by law.

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Ethical issues in healthcare LGBTQ continue to cause discrimination. | Photo Credit: ©goldnetz / Adobe Stock

Legal issues in discrimination against LGBT healthcare: Bostock v. Clayton County

In June 2020, the Supreme Court ruled in Bostock v. Clayton County that LGBT discrimination falls under Title VII of the federal Civil Rights Act of 1964, which prohibits sex discrimination in the workplace.

This ruling sharply contrasts with an early action taken by the Department of Health and Human Services (HHS). Just a few days before the Supreme Court ruling, the HHS issued a new rule that interprets Section 1557 of the Affordable Care Act in a way that denies LGBT individuals their rights to nondiscrimination.

Section 1557 of the Affordable Care Act, which has been in effect since 2010, prohibits discrimination based on sex in federally funded health programs, including insurers and healthcare providers. In 2016, the Obama Administration established a rule that clarified the protection of transgender and LGB individuals to a lesser extent.

However, in light of the Supreme Court's decision in Bostock, there are significant differences. While the Court's interpretation of federal employment discrimination law does not directly affect the HHS rule, which interprets a different statute, it does affirm that discrimination against LGBT individuals is a form of sex discrimination. As a result, the HHS rule became highly questionable and unlikely to be enforceable.

The connection between healthcare discrimination and the Court's decision in Bostock v. Clayton County is straightforward. Both Section 1557 and Title VII of the Civil Rights Act of 1964 protect employees from sex-based discrimination.

Initially, the Supreme Court examined the meaning of the term "sex" in the Civil Rights Act of 1964 context. Justice Neil Gorsuch, who authored the Court's opinion, focused on the term's understanding at the time of the Act's passage in 1964, limiting it to "biological distinctions between male and female."

In its rule interpreting Section 1557, the HHS adopted this narrow definition of sex, aligning with the Court's interpretation.

However, the Supreme Court diverged from the HHS's position. Even under this narrow definition, the Court concluded that employers who discriminate based on sexual orientation or gender identity are engaging in unlawful sex discrimination.

When a business decides to terminate an employee because they are transgender or gay, the decision is made "because of" the individual's sex. When a company refuses to hire a woman who dates women, despite employing men who do the same, it is also based on sex. Similarly, when a supervisor fires a worker for wearing a skirt because she was assigned male at birth, it is an action based on the worker's sex. The Court emphasized that it is impossible to justify these decisions without considering the individual's sex.

This logical reasoning from Bostock easily extends to healthcare. For example, consider a hospital that misgenders transgender patients, a practice endorsed by the HHS in June 2020 recent rule. Employees would use she/her pronouns for a patient assigned female at birth but not for an otherwise identical patient assigned male at birth. Like the employer, the hospital inevitably discriminates based on sex. Another example involves a nurse who admits a man to visit his wife but refuses the same access to a woman who wants to visit her wife. Making these decisions without considering sex is simply impossible.

After the Supreme Court's decision, the HHS faced significant challenges defending its interpretation of "sex discrimination" to exclude LGBT individuals from the protections of Section 1557. The rule will likely face legal challenges seeking a nationwide injunction and eventual invalidation.

The rule indicates that the HHS intended to continue fighting against LGBT rights. Commentators had asked the HHS to await the Supreme Court's ruling, suggesting it would impact their rule. However, the HHS implied that regardless of how sex discrimination is understood in the workplace, the biological distinction of sex holds particular importance in the context of healthcare. In other words, the HHS argued that healthcare is different.

Nevertheless, the force of the Supreme Court's decision indicates otherwise. The Court explicitly stated that "discrimination based on homosexuality or transgender status necessarily entails discrimination based on sex; the first cannot happen without the second."

Consequently, the HHS is not free to categorically exclude LGBT discrimination from the ban on sex discrimination within the Affordable Care Act. Health providers, insurers, and programs should act accordingly.

LGBT end-of-life care: now what?

“I’m gay—what does end-of-life care look like for me?” If that’s not a question that’s ever occurred to you, whether you’re a gay man or not, then it may come as no shock that it’s a question many people don’t ask. End-of-life care for all LGBTQIA+—but especially gay men and trans folx—can be a difficult subject, given very little attention in the medical community, but vitally important to these communities.

The challenges faced by GSMs in end-of-life care include difficulty communicating with providers, lowered perception of safety and acceptance in group homes, and difficulty when carers attempt to assess and respect a patient’s definition of religion and family.

The UK provides a good example of these issues. Some older gay men in the UK may have been alive when it was still illegal to be homosexual in Britain. In fact, any gay man over the age of 51 would have been alive then, making up the majority of gay men in palliative care. 

According to reports by the Marie Curie Center, these men fear discrimination in palliative care settings and are reluctant to discuss their sexuality. This may make it difficult to talk about their health issues relating to sex, to take visitations from partners, or to discuss family and home life with other patients. Some gay men avoid palliative care entirely, to avoid this discrimination and the awkward conversations, even when they are in need.

When there is no outright LGBT discrimination in healthcare, healthcare professionals often make offensive assumptions regarding sexuality and gender identity. Assumptions might include that an older man at some point had a wife or girlfriend, or that a woman coming to bring flowers to her wife is ‘just a friend.’ These heteronormative constructs make palliative care feel hostile and exclusionary. Similarly, if a trans or same-sex partner of a GSM offers to be a carer, they may be offered less support in this role or not be taken seriously and bypassed for a more ‘traditional’ option.

Having a partner who ‘passes’ as heteronormative, despite being trans, bi, or queer, can also shuttle couples directly into a box of incorrect assumptions. Lastly, GSM partners—especially of gay men—may be given less help and support in their bereavement after the loss of a partner, as their involvement with the deceased may not be believed, the relationship thought of as inauthentic or deviant, or the meaningfulness of the relationship severely minimized.

"When there is no outright LGBT discrimination in healthcare, healthcare professionals often make offensive assumptions regarding sexuality and gender identity."

Although the goal of palliative care is to help someone with a life-limiting illness live as pain-free and independently as possible (and also to add to the quality of life for those around them), it often does not take psychological pains into account for GSM patients. Here are some ways that medical professionals, other patients, and visitors to end-of-life care facilities can better ease the phycological pain for queer persons being thrust into the heteronormative space of most facilities:

  • Avoid assumptions—ask who their gender-neutral partner is, if they have one, and what their preferred gender pronouns are.
  • Use inclusive language—not just ‘partner,’ but ask patients who their ‘important people’ are, and who should be included in palliative care. Many queer people, especially older queer folx, have chosen family that is more important to them than blood family.
  • Involve the partners the patient chooses as significant in palliative care, and do not base this on traditional titles. Many elderly queer people are unmarried to their partners, and a lack of the ‘husband/wife’ label should not diminish their role.
  • Vitally, do not share information about sexual orientation with others. If someone has explained to you that they are GSM, this does not give you the leeway to share that information with others; they may not be comfortable with having that be public.

Follow these steps with all people. Just because someone is in an outwardly heteronormative relationship, it does not preclude them from being queer. Bi and poly people may especially feel the burden of this, if they have an opposite-sex partner visit them.

For people in a same-sex or queer relationships who are entering palliative care—especially those not in a civil partnership or marriage—it may be especially complex to figure out how to include a partner in that care. Financial concerns relating to inheritance, pensions, and benefits are of especial anxiety.

Equally, if not more troubling, same-sex partners in care often worry that their healthy (or healthier) partner will be barred access to them and excluded from updates and the decision-making process regarding their care and medication due to implicit LGBT discrimination in healthcare.

To help with this, it is important for queer couples to make an Advanced Care Plan, which includes naming someone as your next of kin. Despite how that title sounds, your next of kin in no way has to be blood-related, or married to you: it can be any trusted person who should be informed of any updates to care, appraised in any choices going forward, and consulted on decisions should a patient become incapacitated. Doing this may help alleviate the burden of some of these concerns. Anyone can serve as your next of kin.

Often in society, we talk about the isolation of old age and that of chronic illness and deadly illness, but it’s important to note that GSMs can experience even more isolation in end-of-life care. They may feel forbidden in groups to talk about their partners, alienated from the largely cis-hetero conversations of peers regarding marriage and family, and dismissed by other patients or staff who refuse to use proper pronouns or titles (such as calling a boyfriend a ‘friend’ or a husband a ‘brother’).

Queer people, especially older queer people, are naturally more isolated in general. Older queer people, who experienced less freedom to be publicly themselves and less access to dedicated queer spaces in their lifetimes, may have fewer friends and a slimmer support network. They may depend on their partner more intensely than some heterosexual couples. This is often due to the secrecy surrounding those relationships. They are also less likely to have children to come to visit them. All these factors make it extremely important to update palliative care to be more queer-inclusive and culturally competent.

Another factor to consider is the difficulty with families. When a queer person is sick, they may not want their family contacted. If families have disowned the person for their GSM identity, or else are hostile towards the chosen partner or identity of a GSM, involving family—or pressuring them to do so—may make them more uncomfortable, and stress can quicken the deterioration of health.

Part of the point of end-of-life care is to help patients maintain their individuality and freedom. It is vital to note that this looks differently for queer people than it may for heterosexuals. Creating a sense of community for an LGBTQIA+ person might be more involved, because they may not immediately feel that the people in their town or even who share their illness qualify as their true community.

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A study by Neville and Henrickson, called “Lavender Retirement” (2010), delves into possible solutions for this. It found that the key methods to improve palliative care for LGBTQIA+ folx was staff and physician attitude and acceptance of identity. Next most important was erasing heteronormative assumptions from the care process—this was especially so for older gay men, many of whom led heteronormative lives, hiding the true nature of their same-sex relationships from family and, in some cases, even wives and girlfriends, due to societal pressures.

The fact that being gay was effectively pathologized for elder generations leads to greater perceived stigma, and even in open and inclusive settings, healthcare providers should not pressure patients to share intimate details they are not comfortable sharing. Ageism within healthcare and particularly within queer spaces themselves, can sometimes add to this feeling of exclusion, especially as research shows that the highest percentages of LGBTQIA+ people living alone are those 60 and over.

Palliative care must veer towards equity over equality. Treating everyone the same will fail to understand and accommodate the real lived experiences of queer folx who are entrusting professionals with their last years, months, or weeks on earth—and it may ultimately aggravate inequalities.

Having more dedicated programs, outreaches, and information for queer persons should be the next step. As one queer person was quoted in the Marie Curie pamphlet for end-of-life care for LGBTQIA+ persons:

“The conversations [in palliative care centers] are all about husbands, wives, grandchildren. If there was another gay person who I could have a little chat with, and then we could both chat to the others it would be different. But on my own, I just don’t feel I can join in. What can we talk about, would I be accepted?”

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LGTBQ bias in healthcare is real | Photo Credit: ©goldnetz / Adobe Stock

When your identity is classified as a disorder

‘Queer’ is somewhat of an umbrella term that allows those to create their own definition and space within GSM. Because there is no finite definition for queer personage, it may be difficult to nail down exactly what the queer medical experience is. This becomes even more difficult when your very identity is considered a medical ‘abnormality’—as it is for intersex persons and asexuals.

‘Abnormality’ is not only a harsh word—it’s incorrect. Anything occurring in nature, much less in 1 to 2% of the population (~150 million people), could be considered relatively natural and normal. However, while homosexuality was recently de-criminalized and declassified as a mental disorder in most countries— and while trans rights have been making similar strides—these two identities have continued to be consistently marginalized.

According to the Intersex Society of North America, intersex is a variety of conditions where a person is born with reproductive anatomy “that doesn’t seem to fit the typical definitions of female or male.” This can include having ‘male-typical’ anatomy on the outside, but ‘female-typical’ anatomy on the inside, people born with mosaic genetics, or people born with genitals that are ‘in-between’ typical representations, i.e., having features from both sets of reproductive anatomy.

Sometimes the condition is ‘obvious,’ while at other times, a person goes through their whole life without ever knowing that they are intersex. But even without knowing, intersex conditions can manifest themselves in a number of ways. If one is not aware of the condition, one may experience anxiety, depression, or dysmorphia, or have ‘unexplained’ infertility.

Because intersex is considered ‘abnormal,’ unless the condition is outwardly obvious, it is often down to the intersex person to figure it out on their own. This process can often be emotionally tumultuous and difficult to explain to others. More often than not, intersex people with non-obvious or internal intersex manifestations have never known their condition: in many cases, the fact that a person is intersex is never discovered at all, or only discovered after their death. That does not stop it from being true, however.

The fact that there are no truly accurate modern ways to screen for the many forms of intersex manifestation, the fact that there isn’t the ready vocabulary to talk about it, and the fact that there are no screenings made for people at birth to determine if they are intersex (beyond a doctor seeing something they’d classify as ‘not normal’) speaks to medicine’s exasperating apathy towards the subject. It’s a disinterest that has cost lives.

Intersex people are much more at risk for congenital adrenal hyperplasia, a condition formally thought to affect girls more than boys. In fact, AMB (assigned male at birth) boys born intersex who have congenital adrenal hyperplasia often die of it undiagnosed, as it is more easily detectable in newborn intersex AFB (assigned female at birth) girls. This condition has often been misdiagnosed as Sudden Infant Death Syndrome. As of yet, we are not sure what other diseases may strike intersex people at a higher rate than non-intersex people, as not enough research has been done. But congenital adrenal hyperplasia gives us an interesting case study for another failure of modern medicine to validate intersex folx.

Assigned male at-birth boys raised as boys with congenital adrenal hyperplasia who do not die of the condition and instead have the condition managed may experience feminization of hormones during puberty, including menstruation.

This showcases an alarming side to how we currently handle intersex health care. Oftentimes, it is left up to parents or a mental health specialist to assign a gender to an intersex child, and the child does not have to have their medical history fully disclosed to them. Parents and mental health professionals generally will err on how the child ‘looks’ rather than how they ‘feel’—a poor way of determining gender.

The phycological trauma experienced by anybody living as a gender they don’t identify with is already great. This can be further confused by later experiencing elements of puberty for a gender they were not assigned. Similarly, an intersex child with no knowledge of their condition who suddenly begins showing signs of a gender that is not their own—such as menstruation in an AMB male who is comfortable with being male—poses its own questions, traumas, and difficulties. The fact that this information, even when known, can be withheld from the people whose lives it affects is staggering.

Asexuals are invalidated by the medical community

Another ‘invisible’ group invalidated by the medical community is asexuals. Even the term ‘asexual’ is highlighted as misspelled in Microsoft Word—our language perhaps does not suspect there could be more than one, in the plural.

Asexuality is still classified as a disorder, often misunderstood as inhibited sexual dysfunction (ISD) or any other number of sex-inhibiting maladies, and often marginalized even inside queer spaces. Asexuals can be aromatic, heteroromantic, biromantic, or homoromantic—but queer spaces scoff just as often as heteronormative spaces at a sexuality with a grim history of sexual ‘correction.’

In the modern-day, it is psychology that is failing asexuals: specifically, asexuals with anxiety or depression. A common side effect of depression medication is lowered libido, and a common question asked to patients adjusting to a new medication or dosage often is, “Have you experienced loss of libido?” This is, of course, seen as a problem. Not having a libido is a medical issue—not a sexual identity, as far as many therapists are concerned.

There are numerous stories of asexual patients explaining to psychiatrists that they have never experienced any libido or have a naturally low or limited desire for sex. These patients find themselves having their medication adjusted, tampered with, or cut off altogether because doctors see their sexuality as a malfunction and refuse to take it seriously. People who identify as demi-sexual, who suffer from depression or anxiety, and who are single, often face the same misunderstanding and shift to their prescriptions if they do not answer the question to the satisfaction of doctors.

Asexual people are also less likely to be prompted to get the HPV vaccine or to be screened for cervical cancer, similar to lesbians and anyone not having active sex with men, even during visits to the gynecologist. Similarly, a litany of preventable illnesses—like ovarian cysts or endometriosis—may be misdiagnosed as an STD or other sex-related disease when doctors feel asexual or demi patients are ‘lying’ about a lack of sex.

This is true of all sex-repulsed people, who often feel bullied and intimidated in the doctor’s chair and by medical forms when they are pressured to talk about the last time they have had sexual intercourse, not believed when they say they’ve never had sex, sex is infrequent, or it has been a long time since, or questioned multiple times on the possibility of pregnancy.

Although identities like intersex or asexual are far from new to humanity, they are newer to the spheres of social, medical, and ethical discussion than identities such as trans or gay. While those with these identities may benefit from ‘passing’ in a way that other identities cannot, in cultures that are largely binary and sex-positive, fitting in and feeling comfortable about being a gender or sexual minority can be harrowing. This feeling only increases if your doctors and parents hide who you are from you, decide it for you, or outright reject your identity as impossible.

Removing LGBT discrimination in healthcare: where to from here?

In 2017, a national survey for the Center for American Progress concluded that bias in healthcare prevents LGBTQ people from accessing healthcare. A staggering 8% of LGBT respondents were turned away from a healthcare provider because of their identity—that number rose to a staggering 29% of respondents for transfolx. This included access to surgeries, therapy, hormone or fertility treatment, and even primary care services—and it extended to the children of families with GSM parents.

This persistent LGBT healthcare discrimination has prompted almost 23% of GSMs to forgo care when they most needed it, according to a 2015 national survey.

Doctors take the Hippocratic Oath to do no harm. But perhaps it is too lofty to expect doctors to be better than culture itself, or the law, which is headed in a frighteningly backward direction in some places. There are still many strides to remove LGBT discrimination in healthcare and move towards equality for GSMs, in medicine, and in all walks of life.

But GSMs have always been brave and taken those strides. Seeing to their health, whether that means going for the screenings, a GSM wasn’t told they needed (or was shooed away from), demanding fair treatment in palliative care through proper assigned next of kin and proper pronouns, or even demanding to know your own medical history or standing by your own sexuality—these are the strides GSMs can make right now, as queer people push for more and better research into their health care.

This article began as a list of key problems for each letter of the LGBTQIA+. But, as the research evolved, so many areas were more connected than not. While individuals and groups can have unique problems, the overlap in the medical community only proves the need for more dedicated training, open conversations, and better legislation to end LGBT discrimination in healthcare.

Article by
Madison Salters

Madison Salters, the author of "LGBT Discrimination in Healthcare," is an award-winning writer, essayist, and documentarian was selected as a 2018 U Revolution Media Fellow in the writing category.