Aug 30, 2017
ASCO Publishes Guidance on Delivering High-Quality Care to Every Patient
By Hilary Adams, Staff Writer
In June 2015, the U.S. Supreme Court announced that marriage equality was the law of the land, and many Americans celebrated the ruling as an important milestone in the fight for civil rights for LGBT people. However, in spite of the legal victory, bias and discrimination persist against LGBT individuals, including when they enter a health care setting. To avoid uncomfortable or possibly even confrontational encounters with doctors and nurses, some LGBT individuals may forego seeking out medical care.
A cancer diagnosis, however, leaves an LGBT patient with no choice but to face a system that, historically, has not been altogether kind to their community.
Facilitating Disclosure of Sexual or Gender Identity
Liz Margolies, LCSW, founder and executive director of the National LGBT Cancer Network, and Darryl Mitteldorf, LCSW, founder and executive director of Malecare and the National LGBT Cancer Project, point to challenges faced by LGBT patients with cancer at every step of the cancer care continuum, from diagnosis to palliative and end-of-life care. One of the most universal challenges is invisibility and disclosure, or lack thereof.
Through his conversations with LGBT patients with cancer, Mr. Mitteldorf observed that many patients were reporting that their doctors looked surprised, if only for a moment, when they disclosed their gender identity or sexual orientation.
When this happens, he said, “the physician and the patient have a momentary disconnect around who that patient is,” which can cause what he calls psychosocial toxicity. Such interactions could potentially drive the patient to avoid seeking medical care in the future.
These psychological adverse effects are only a part of the picture, explained Ms. Margolies.
“If people feel like they can’t bring their whole self into treatment, for a variety of reasons, they don’t fare as well,” she said. “In fact, we find that LGBT people report poorer health after cancer treatment than the general population of cancer survivors.”
For many LGBT patients with cancer, the stakes are too high to risk coming out during treatment.
“Men in the Malecare support group network report many instances of fear of coming out to their medical caregivers,” said Mr. Mitteldorf. For example, when a gay man is diagnosed with prostate cancer, he may experience anxiety about whether to bring his same-sex partner to a consult for fear that a homophobic surgeon would leave some of his lesions behind, or that a homophobic nurse would make him wait longer for his pain medication.
“When you have a life-threatening illness, it’s much riskier to alienate the care team that could have your life literally in their hands,” said Ms. Margolies. “But [invisibility] has health ramifications. The patient-centered care movement says that how patients experience their care has far more predictive value in their overall health than any bloodwork or MRI.”
Another disclosure challenge presents itself at the very beginning of the cancer care timeline, when a patient checks in for their appointment. Most practices do not have a mechanism in their patient information forms for individuals to share their sexual orientation or gender identity, forcing many LGBT patients to find a moment to bring it up themselves or correct a misunderstanding with the care team.
“It shouldn’t be the job of the patient, who is already vulnerable and afraid, to have to come out,” said Ms. Margolies. “It is the provider’s job to make it safe and welcoming and invite people to present their whole self. Research shows over and over again that LGBT people want to be asked; you just have to let us know that it is safe first.”
LGBT patients aren’t wrestling with coming out just once during their treatment. When navigating the complex cancer care system, they have to decide every time they meet another member of the care team: the oncologist, the surgeon, the nurse, the MRI technician, the social worker, etc.
“If there’s a form that’s already in the system, then you don’t have to worry about coming out every time,” explained Ms. Margolies. “Otherwise, patients say that with each procedure they went through, they had anxiety about coming out on top of the anxiety about the procedure.”
Rule #1: Don’t Assume
A significant challenge for LGBT patients with cancer is having to overcome assumptions made by their care team about their identity. “Cisgender heterosexual with a healthy family life” tends to be the default assumption by health care providers. Anne Katz, PhD, RN, FAAN, a certified sexuality counselor at CancerCare Manitoba, cites this systematic, often unconscious heterosexism as a key issue.
“The assumption that somebody is heterosexual really starts at the reception desk. When a phone call is made for an appointment, saying ‘please bring your wife with you’ to a man assumes that man is heterosexual,” said Dr. Katz.
“Most non-LGBT people would put their spouse and parents as the top members of their support team. For many LGBT people who have been rejected by their family of origin due to their sexual or gender identities, however, they may instead have a ‘family of choice,’” which can include friends or even ex-partners, Ms. Margolies said.
“I think one of the most important things providers can do is find out who is on their patient’s support team,” she continued, “because that is the person who is going to take care of the patient when they go home, or should be present when the results of the biopsy are given. Just ask, ‘Who is your support team?’ and ‘Who do you need to be here with you?’”
“Acknowledging the diversity of family types goes a long way in helping patients feel comfortable discussing more medically relevant issues, such as quality-of-life goals vis-à-vis treatment choices and shared decision-making,” Mr. Mitteldorf said.
Another detail that often gets overlooked, but is nonetheless crucial to building trust, is asking patients about their preferred pronouns. Again, don’t assume—a patient who presents as a woman may ask to be called by masculine or gender-neutral pronouns, for example. Assuming gender identity based solely on outward appearance can alienate transgender, nonbinary, or gender nonconforming individuals, and prevent them from sharing information that may be critical to their care.
In a perfect world, every oncologist would receive comprehensive training about gender identity and sexual orientation in order to deliver sensitive care to all patients, including those who identify as transgender and gender nonconforming. As this is not the case, oncologists should feel comfortable using all resources at their disposal to ensure they’re giving their patients the best care possible, up to and potentially including referring patients to providers with more experience in helping LGBT patients with cancer.
Mr. Mitteldorf noted that “the relatively low incidence of transgender people with cancer is not going to create massive numbers of experienced physicians, but we do want oncologists to understand that not every man presenting to you is necessarily someone without a cervix or ovaries.” For practitioners who have not knowingly treated LGBT patients, cultural competency training is invaluable to prepare for future encounters.
Treat Individually, Not Equally
To many health care providers and members of the oncology care team, treating all patients equally may sound like a good thing in theory. In practice, however, this is a mistake—every patient is different, and should be treated individually.
“If a doctor says, ‘I treat all patients equally,’ then they’re not treating all patients: they’re treating straight, middle-class people,” said Mr. Mitteldorf. “Many doctors feel like they’ve done enough because they think they’re treating all patients equally.”
By treating patients as individuals rather than as a part of a larger, homogenous whole, “you are showing that you care and are being brave enough to ask who your patients are or dealing with the challenge of whatever answer is presented” when asked about their sexual orientation or gender identity, Mr. Mitteldorf said. Particularly in the setting of cancer, where the disease and its treatments can have a significant effect on sexual function, “doctors need to contextualize discussions about sex with the actual sexual practices of their patients.” He suggests initiating these discussions by asking a patient, “What do you do to enjoy sex and achieve orgasms?”
It’s critical to remember that not all LGBT people are the same. Along with gender identity and sexual orientation, race and ethnicity, socioeconomic background, religion, and countless other identities are woven through the tapestry of each individual who walks into your clinic, and each of those identities intersect in ways that play a role in their cancer care experience, said Ms. Margolies.
For example, “if somebody is a black gay man with prostate cancer,” she said, “he has two concerns about discrimination in the health care system: both as a black man, and as a gay man.”
ASCO’s Role in Reducing Disparities
In April 2017, ASCO released a position statement, Strategies for Reducing Cancer Health Disparities Among Sexual and Gender Minority Populations, with the goal of educating providers and ameliorating some of the anxieties and other challenges faced by LGBT patients with cancer.1 The statement, which was reviewed by the Gay and Lesbian Medical Association, identifies five broad areas that must be addressed: patient education and support, workforce development and diversity, quality improvement strategies, policy solutions, and research strategies.
The statement calls for a coordinated effort to address health disparities affecting the LGBT community, including:
- Increased patient access to culturally competent support services
- Expanded cancer prevention education for LGBT individuals
- Robust policies prohibiting discrimination
- Adequate insurance coverage to meet the needs of LGBT individuals affected by cancer
- Inclusion of LGBT status as a required data element in cancer registries and clinical trials
- Increased focus on LGBT populations in cancer research
Patient Education and Research Strategies
At the core of improving care for patients who identify as LGBT is supporting them and creating a safe environment for them to discuss crucial yet sensitive health information.
Dr. Katz and Ms. Margolies noted that patient education materials that only include photos of heterosexual couples reinforce assumptions of heterosexuality that could negatively impact a patient’s experience of care. Visual indicators to LGBT patients that they are in a safe and welcoming environment include representation in patient materials, prominently placed nondiscrimination statements that include gender identity and sexual orientation, as well as rainbow stickers or flags.
Intake forms that don’t allow LGBT patients to self-identify not only cause psychological stress for patients, but also lead to scarcity of data regarding cancer mortality and cancer prevalence among LGBT people. In that same vein, few if any clinical trials gather information about participants’ gender identity or sexual orientation. This can result in insufficient assessment of the needs and standards of care for LGBT patients with cancer and cancer survivors.
For example, according to the Centers for Disease Control and Prevention, lesbian, gay, and bisexual individuals use tobacco at a rate almost 44% higher than the general population.2 However, because none of the cancer registries collect information about gender identity or sexual orientation, “we can’t know for sure if there is even one more case of lung cancer” among this group, Ms. Margolies said.
“Without acknowledging that LGBT people exist, we can’t understand progression of disease relative to their experience,” said Mr. Mitteldorf.
In accordance with a National Institutes of Health strategic plan to address research needs relevant to LGBT populations, the ASCO position paper recommends promoting the inclusion of LGBT identity as a required data element in cancer registries and clinical trials, as well as promoting increased research focus among LGBT populations.
Workforce Development and Diversity
Increasing provider sensitivity and workforce diversity is fundamental to improving patient education and support. If LGBT patients see themselves represented in the oncology care workforce, they may feel safer and more included in their care, according to Jennifer J. Griggs, MD, MPH, FACP, FASCO, of the University of Michigan. Dr. Griggs served as lead author of the ASCO position statement.
“We know that when people who work in the health care field feel safe, and the less likely they are to face discrimination at work, the more likely they are to be open and welcoming and hopefully make patients feel safer,” said Dr. Griggs.
For non-LGBT providers, understanding the needs of LGBT patients is critical for helping those patients navigate the cancer care process, according to Dr. Katz. Cultural competency and sensitivity is important for every member of the care team, and can be improved with cultural competency training from organizations such as Malecare, the National LGBT Cancer Project, and the National LGBT Cancer Network (see sidebar for additional educational resources).
“I travel around North America giving talks about this subject, and it’s fairly rare for my oncology colleagues—surgical, radiation, and medical oncologists—to come to these sessions because they think it doesn’t apply to them,” said Dr. Katz. She noted that there is a subtle trend of oncologists “passing the buck” to other members of the oncology care team, such as social workers, when it comes to patient sensitivity.
Mr. Mitteldorf and Ms. Margolies see the 4 to 5 hours of LGBT cultural competency training most medical students receive as an important issue to be addressed.
“There’s more time being spent on learning how to manage an office and billing than there is around LGBT competency training,” said Mr. Mitteldorf.
“Uneducated providers and a lack of targeted information for this population, both in terms of cancer risks and information about sexuality and fertility after cancer treatment, are big problems that we see,” said Ms. Margolies.
Despite nondiscrimination policies established by the Affordable Care Act, LGBT patients have faced unique challenges in terms of access to health care. For example, transgender individuals may be obstructed by a lack of coverage for assessing organs that do not match the gender marker on their insurance card, and experience limitations in health care coverage for transition-related care and cancer screening. These coverage obstacles, coupled with the potential for embarrassing or contentious interactions with the provider, may lead to total avoidance of health care.
“It’s heartbreaking to me that people avoid medical care because of experiences that they’ve had with the health care system, and I worry that that has happened, is happening, and will continue to happen,” Dr. Griggs said. “In the long term, we want to improve the quality and continuity of care for our patients and work on policy solutions that ensure health care access for our patients.”
In the long term, the statement outlines far-reaching goals, including expanding ASCO’s educational offerings to cancer care providers and their patients. The authors of the statement also hope to work with the ASCO leadership to develop continuing education resources to help providers feel more confident that they are delivering the highest quality of truly personalized care to their LGBT patients.
Although the agenda is ambitious, Dr. Griggs emphasized the importance of continued research on disparities and ways of improving cancer care for LGBT patients. “It’s not a monolithic group that we’re trying to speak up for: the needs of a transgender man are different from those of a bisexual or gay woman, and so on,” she said. “The release of this statement cannot mean just checking a box; we really need the members of the oncology care community to commit to this effort, and ASCO needs to help them do so.”
- Griggs J, Maingi S, Blinder V, et al. American Society of Clinical Oncology position statement: Strategies for reducing cancer health disparities among sexual and gender minority populations. J Clin Oncol. 2017;35:2203-8. Epub 2017 Apr 3.
- Centers for Disease Control and Prevention. Lesbian, gay, bisexual, and transgender persons and tobacco use. cdc.gov/tobacco/disparities/lgbt/index.htm. Accessed July 17, 2017
A Note on Acronyms
This article uses the common acronym LGBT to refer to individuals who identify as lesbian, gay, bisexual, and/or transgender, and this usage is intended to be inclusive of the full range of gender identities and sexual orientations that are not cisgender or heterosexual. This acronym is used by the National LGBT Cancer Network, the National LGBT Cancer Project, and the Gay and Lesbian Medical Alliance, among other organizations. SGM, or sexual and gender minority, is used by the National Institutes of Health as an “umbrella phrase that encompasses lesbian, gay, bisexual, and transgender populations as well as those whose sexual orientation, gender identity and expressions, or reproductive development varies from traditional, societal, cultural, or physiological norms”; this acronym is used in ASCO’s statement on health disparities.
Resources for Clinicians and Social Service Workers
The National LGBT Cancer Network offers a cultural competency training on “Reexamining LGBT Healthcare,” which can be customized for use in your practice. This training is available at cancer-network.org and lgbtcultcomp.org.
The National LGBT Health Education Center provides educational programs, resources, and consultation to health care organizations with the goal of optimizing quality, cost-effective health care for LGBT people. Learn more about their programs at lgbthealtheducation.org.
SAGE (Services & Advocacy for GLBT Elders) offers cultural competence training on issues affecting older LGBT people through its National Resource Center on LGBT Aging. Learn more about their training at lgbtagingcenter.org.