Non-English Speakers Undergoing Active Cancer Treatment Need Support

Did you know that according to the United States (US) Census Bureau one in five individuals speak a language other than English at home and one in ten are actually non-English speakers. They also found that the number of people who spoke a language at home other than English has nearly tripled over the last thirty years. Additionally, according to Translators without Borders it was discovered that there are between 350 and 430 languages spoken in the US, making it one of the most linguistically diverse countries on earth. Americans trace their roots to every area of the globe, and many can speak the language native to the locales they or their ancestors came from.

For all people no matter what language they speak cancer treatments can be hard to understand. Conversations in cancer care regularly involve complex, confusing and emotionally-laden discussions, resulting in patients having trouble understanding cancer-related discussions leaving them hesitant to ask questions. This issue is easily compounded for patients in the US who do not speak English or maintain limited English proficiency (LEP) causing them to feel anxious, afraid or overwhelmed when they are diagnosed. In effect, poor communication in cancer care may worsen patient’s feelings of helplessness and distrust, which may result in treatment nonadherence and care obstructions. Thankfully there are some ways to help deal with this issue.

Understanding Your Cancer Diagnosis

Anyone with a cancer diagnosis should do some research and get as much basic, useful information as they can. This will help with understanding how to make decisions about your care. If you have LEP then it is helpful to write down your questions and concerns and bring them with you when you see your health care provider who can get a translator into the conversation. Consider bringing a family member, friend, or caregiver with you who does have English proficiency to your first few appointments as they can help you understand what you are being told.

It’s a good thing to start think about how much you want to know about your cancer. For example some people want all the facts and details. This can help you to be a part of the decision-making process. Others may want to learn the basics and leave the details and decision making to their health care providers. Think about what works best for you and then let your health care team know how you would like to proceed.

Talk to Cancer Survivors

It can be almost impossible for people who have not had cancer to understand what you may be going through so it can be very beneficial to talk with people you are comfortable speaking with who have also been in your situation. Other cancer survivors can share their experiences, they can tell you what to expect during treatment, and they can suggest coping mechanisms that non cancer people know nothing about. You can connect with other cancer survivors through support groups just ask your health care provider or search the internet for online support. The American Cancer Society's Cancer Survivors Network is a good place to start or try online message boards which also bring cancer survivors together, ask them how they dealt with these complex issues.

Keeping the Lines of Communication Open

The significance of cancer treatment in non-English speaking populations undergoing active cancer treatment varies depending on cultural norms and is contingent upon a multiple factors including economic, political, social, and cultural practices. That is why it is important to have honest conversations with your healthcare providers as patients may feel alone around people who don’t understand what is happening to them. Especially if friends and family are trying to protect a patient from bad news by not talking about the cancer treatment or a patient may feel alone or less sustained because they are trying to look resilient by not sharing their feelings.

Within the realm of health equity and health disparities there are many issues within immigrant communities in terms of cancer screenings. It’s a community that needs a lot of support and there’s a lot of work to do in that space. This is a topic of considerable debate, the role it plays in the lived experiences of people and its impact on the health and wellbeing of communities encompassing culture, tradition, religion, and shared heritage.

 Dame Idossa, MD is an Assistant Professor of Medicine and a Breast Oncologist in the Division of Hematology, Oncology, and Transplantation at the University of Minnesota Medical School. Dr. Idossa is a native of Ethiopia and immigrated to Minnesota at the age of 8. “When we lived in Ethiopia, I was part of a community where people who looked like me could be anything. I didn’t have a stereotype of what a Black woman could or could not be. It was odd when I came to the US and no one looked like me. I had one Black teacher between third grade and my senior year. I didn’t see Black women in academia or medicine until I reached medical school.”

Dr. Idossa is a passionate advocate for diversity and inclusion and has a long-standing commitment to serving vulnerable populations. Her research interests focus on disparities in cancer care, breast cancer in young women, and increasing access to clinical trials. She also studies workforce development, particularly the mentorship experiences of underrepresented trainees in hematology/oncology subspecialties. Dr. Idossa has published numerous articles in medical journals related to her research interests. Recently, Dr. Idossa published a paper Mentorship Experiences Are Not All the Same: A Survey Study of Oncology Trainees and Early-Career Faculty showing that the under-represented in Medicine (URiM) individuals may be less likely to have effective mentorship especially when applying for awards and grant support. Understanding the challenges of URiM trainees can help shape training environments in academic medicine to ensure that they are grounded in diversity, inclusion, and retention.

“I was lucky enough to have a childhood in which people who looked like me were doctors, scientists, teachers or anything else they wanted to be. I grew up watching people in my community go into various professions. This normalized Black excellence, achievement and choice for me. When I moved to the United States at age 8, I suddenly became racially minoritized, and finding people who looked like me in medicine became nearly impossible. I did not come across a Black physician until almost a decade later when I started college. Fortunately, my formative years and the support I had from my family allowed me to continue to dream that I could one day become a physician.”

Patient and Provider Hurdles

Underutilization of interpreter services has been shown to be a key factor impacting quality patient care. Some reasons for underuse include a lack of knowledge regarding free interpreter services, culturally-laden expectations, privacy concerns, and familial barriers as well as a doctors desire to save time and false perceived language mastery.

Communication and understanding are crucial in the practice of medicine, especially in oncology, where clinicians rely on verbal exchanges to provide information and engage patients in shared decision making. According to data collected by the US Census Bureau approximately 25 million people or 9% of the US population over the age of five have LEP. This poses challenges to communication among whole communities of patients, their caregivers, and clinicians. In a national study based on US census data, primary language of non–English-speaking patients most strongly predicted an unfavorable rating of physician communication. Studies have also shown that language-concordant care can improve outcomes.

Physician-patient communication is necessary with cancer care, for educating patients about their disease, managing their symptoms, discussing prognosis, and for support in navigating the health care environment. Communication is key to establishing relationships that facilitate dialogue about participation in clinical trials. LEP has also been associated with a two-fold increase in risk for serious medical events compared with English-speaking patients. 

Communication in oncology care extends beyond the clinical setting and includes electronic health care portals which allow for updated messaging and is commonly used for scheduling visits and refilling medications. They also offer patients with a means to message their clinicians expressing concern or seeking guidance. However, such messaging portals usually assume English proficiency, a condition that may unintentionally aggravate disparities in access to care.

Future Direction of Cancer Care to the Non-English Speaking

Patients with LEP are susceptible to poorer quality care due to language barriers yet there is little data regarding factors that may positively influence their cancer experience and the nature of cancer care delivery. We need improved understanding of what will impact the quality of care LEP patients receive in the cancer context, including system-level hurdles to service access, underuse of medical interpreters, and deficiency of patient understanding of the medical system and their cancer care. Taken together these factors amplified the risk of communication errors and reduced patients’ capacity to participate in their cancer treatment.

The necessity to increase patient awareness by incorporating accessible resources has become the manifest destiny of the American melting pot culture. Necessitating measures such as language-concordant informational aids like booklets and visual aids into cancer clinics and patient encounters. Employing the use of trained interpreters to promote the understanding of diagnosis and treatment. And help facilitate a patient’s ability to actively engage in their cancer care.

Dean Patterson, Editor

References:

United States Census Bureau, What Languages Do We Speak in the United States? https://www.census.gov/library/stories/2022/12/languages-we-speak-in-united-states.html

Idossa D, Velazquez AI, Horiguchi M, Alberth J, Abuali I, Smith-Graziani D, de Lima Lopes G, Lubner S, Florez N. Mentorship Experiences Are Not All the Same: A Survey Study of Oncology Trainees and Early-Career Faculty. JCO Oncol Pract. 2023 May 16:OP2200643. doi: 10.1200/OP.22.00643. Epub ahead of print. PMID: 37192431. https://ascopubs.org/doi/abs/10.1200/OP.22.00643