How language barriers can add anguish and complicate care for COVID-19 patients who don't speak English
Even though Rodolfo Reyes' partner died of COVID-19 complications more than six months ago, he still buys her flowers almost every day.
Her remains are in a small off-white urn on the kitchen counter he turned into an altar. It is surrounded by some of her favorite red and white roses, and votive candles.
"I think about her every single day, and I still can't believe she is gone forever," said Reyes in Spanish as he stared into the distance while sitting on a chair in the small dining room of the Little Village basement apartment he once shared with his life partner.
Reyes promised her family that he would take care of her until her last breath. And he did, but he couldn't save her from the deadly virus that has taken the lives of more than a million people across the globe.
But his deepest pain, he said, is knowing that she died alone, unable to communicate with him, or anyone for that matter.
Maria Isabel Alfaro was 50. She did not speak English, and before her death, she shared the anguish and desperation she felt because she wasn't able to understand or communicate with the medical staff, Reyes said.
Although the medical staff at the Chicago hospital where Alfaro was hospitalized provided interpreters when possible, "it wasn't enough," he said.
Reyes worries that his partner couldn't communicate something that could have saved her life.
Patients, community leaders and health officials say language barriers are "an added burden" to those suffering from COVID-19 and their loved ones. They recognize the lack of bilingual medical staff and prevention resources in Spanish influenced the way the virus harshly hit the Latino community in Chicago and across the nation.
Facing a second coronavirus surge, hospitals will again see an influx of patients, including many who do not speak or understand English. Approximately 6 in 10 Latino adults have issues communicating with a health care provider due to language and or cultural barriers, according to a 2018 study by The Associated Press-NORC Center for Public Affairs Research.
While officials and hospital staff have mobilized to provide bilingual resources on how the virus spreads, where to get tests and treatment, Pilar Guerrero, an emergency room doctor at Stroger Hospital, says it's not enough.
"You don't provide the patient with the ownership of their own health," Guerrero said about medical staff who are not able to verbally communicate with non-English-speaking patients. "You're kinda leaving them in the dark."
She said challenges go beyond the language barrier in the health care system.
Guerrero believes the messaging around safety and prevention has been culturally insensitive to populations disproportionately hit. Many Latinos are unable to stay home or isolate because they live in multigenerational households. Many don't have a primary care doctor or health insurance. Recent Illinois Senate Public Health Committee hearings noted the need for more diverse medical staff, implicit bias training and cultural sensitivity to address these realities.
The Centers for Disease Control and Prevention noted the Latino community is at elevated risk of exposure for reasons including being essential workers, poor access to health care and that 25% live in multigenerational households. The agency also said in June that "The lack of reliable information in Spanish has impeded efforts to combat the spread of the virus in Hispanic communities." A July study in the Annals of Epidemiology journal found that monolingual Spanish speakers are at an elevated risk of getting infected.
In April, the city announced a Racial Equity Rapid Response team to launch a bilingual education campaign and town hall. On Thursday, the city's stay-at-home advisory noted Black and Latino residents continue to be disproportionately impacted by the pandemic. According to the most recent city statistics, Latinos made up 38% of confirmed COVID-19 cases, despite being 29% of the population. They make up just 16% of those tested for the coronavirus in the city.
As patients with COVID-19 filled the city's hospitals in the spring, language was "one of the biggest barriers," said Sara Mirza, a Rush University Medical Center pulmonary disease and critical care medicine specialist. This has forced hospitals to confront interpretation capabilities and, in some cases, innovate or improve them.
At Northwestern, so many Spanish-speaking patients arrived that the hospital roomed them in the same area, to gather and utilize bilingual staff.
Hospitals use a variety of interpretation services to communicate with patients who speak different languages, including Spanish, Mandarin, Cantonese, Polish, Russian, Korean, Arabic, Urdu and Hindi. Many have certified interpreters on staff or turn to staff members who have tags that say they speak a specific language. But depending on when a patient arrives, an in-person interpreter might not be available, and the patient may have to wait for care until one is located. Hospitals also use phone and video translation options. Patients also have turned to an English-speaking family member for help, often younger ones.
When Reyes' partner became ill in March, the family was unclear about how to obtain information about her condition, despite calling and asking for help in Spanish, he said. It would sometimes take hours to get connected to medical staff or an interpreter who spoke Spanish.
"We were desperate to find out what was happening, and we felt impotent because for a few days we didn't know anything about her and we also couldn't go to the hospital (to visit)," Alfaro's older sister Rosa Alfaro said in Spanish. Once they did speak to someone, they had trouble understanding the complex medical terminology, she said.
Distressed, Rosa Alfaro turned to her daughter, Janet Garcia, 26, for help. She speaks English and had served as her mother's translator at school and at doctor visits.
Garcia, who lives in Tennessee, was designated the point of contact and called the hospital every day, sometimes multiple times a day, to ask about her aunt.
She would record every single call and take notes before calling her uncle and other family members.
"I was afraid that I was going to miss something or tell my family the wrong information," Garcia said. "I was terrified that if something bad happened to my aunt, it was going to be my fault."
Her aunt died on April 27. Garcia got the call from the hospital and shortly after broke the news to Reyes and the rest of the family.
"It was traumatic and painful," she said.
Through the pandemic, children of immigrants who do not speak English continue to be the ones responsible for translating COVID-19 information to their parents, said Nury Ortega, president of Friends of Spry, an organization of Spanish-speaking parents founded at Little Village's John Spry Community School.
Members who speak English began acting as advocates for those who don't. They have since focused on sharing information in Spanish about COVID-19 prevention and care for patients who contract the virus.
"I have seen firsthand the frustration at the lack of, or insensitive information, about COVID-19 in our language and specifically keeping in mind the way our community lives," Ortega said.
Ortega criticized the response from the federal and local government to the pandemic and the initial lack of bilingual information.
"If our government doesn't change the system that continues to abandon low-income, Spanish-speaking immigrant communities, we will always be left behind," Ortega added. "We have been isolated, and we will continue to be isolated because of our language, the lack of health insurance, our immigration status and the color of our skin."
After refusing to go to the hospital for more than a week with COVID-19 symptoms in late April, Rosalio Espinoza, 57, a father of six, couldn't resist anymore.
His 15-year-old daughter, Olivia Espinoza, called 911 after he had trouble breathing and then helped to translate when the paramedics arrived at their home in Little Village.
His wife, Maria Espinoza, begged the paramedics to let her go with him, but they said no, so she gave her husband the only cellphone they had.
For the first three days, Rosalio Espinoza would answer his family's phone calls to let them know he was alive, he said. Suddenly, the phone calls wouldn't go through anymore, his wife recalled. The phone battery had died.
"I felt a deep anguish, and I asked my daughter to please call the hospital, but she told me she didn't feel capable of doing it because she couldn't understand what the doctors were saying," Maria Espinoza said in Spanish.
Rosalio Espinoza said he tried to focus on "trusting that doctors knew what they were doing."
"I just prayed that I would get better to see my children again," he said.
When he was finally discharged a week later, despite getting the aftercare instructions in Spanish, all he understood was that he had to continue taking medicine, he said.
Eileen Johnson, Northwestern's manager of interpretation services, said with a virus so little understood, clear communication has been vital. Especially during end-of-life conversations, she said, having a human presence is important.
"It's really comforting to our patients and their families," she said.
At Sinai Health System, which serves predominantly Latino communities on the Southwest and West sides, there are 30 caregivers who are bilingual and bicultural professionals, said Raul Garcia, the director of community relations. They include interpreters, social workers, community health workers, family case managers and mental health professionals.
Despite the high number of infections, Garcia believes the help with translation has been sufficient, "but if we had more, it would be much better," he said.
At Rush, staffers have treated COVID-19 patients speaking an estimated 60 languages. As a doctor who speaks multiple languages, Mirza knows the look of relief on patients' faces when they realize she speaks Urdu.
But she also knows the challenges when a language isn't shared. One patient, for example, thought doctors were saying the patient was about to die. Instead, doctors were communicating that the patient would be put on a ventilator.
People might nod as if they understand, Mirza said, but once an interpreter is involved, they share more detail about their condition.
The Joint Commission, which offers accreditation to hospitals, requires hospitals to have interpretation services and provide information tailored to a patient's language. This can include staffers or translation through phone or video.
But first, patients must know they have this option. Hospitals vary on how they make clear to patients their language options. At Edward-Elmhurst Health system, staffers wear tags saying what languages they speak. At Advocate Health Care, each patient is asked whether they need an interpreter.
Guerrero said that while some patients are not comfortable communicating their symptoms through a third party, having someone who speaks their language still brings some level of comfort. "If they speak Spanish, it gives the patients ... a sense of security that even though it's an unprecedented time, they are going to get them the help they need."
In the neighboring town of Cicero, Irene Romulo made sure the community had information about COVID-19 in Spanish.
Residents turned to her publication, Cicero Independiente, which publishes articles in Spanish and English, to learn about the virus, where to get tested and where to get help. The publication has a number of stories that highlight the unique struggles of the Latino community.
In April, after her grandfather died of COVID-19 complications, Romulo wrote an editorial: No, It's Not that Latinx People Don't Care, It's Our Governments That Don't. It was a response to public officials suggesting that Latinos were being disproportionally affected by the virus because they were careless, she said.
"As a country, as a town, we could have been more prepared for this; to address the systematic factors that lead to this," Romulo said.
"We shouldn't have to wait for a pandemic to hit to realize how crucial it is to have resources and medical staff that speak Spanish."
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