WASHINGTON — Ed Zuroweste, a family practitioner in south central Pennsylvania, got a call a couple of years ago from a nearby hospital in Chambersburg. A restaurant worker, newly arrived from Guatemala, had staggered into the emergency room a few days before with severe shortness of breath and coughing up blood.
Using as a translator the man's co-worker, a Mexican national with limited English himself, the staff took a medical history. They ruled out tuberculosis because the Guatemalan said he had not had contact with anyone with the infection. They treated him for pneumonia and released him a couple of days later.
Then the results came back from the specimen they had cultured. The Guatemalan had tuberculosis after all.
Zuroweste received the call because he is a tuberculosis expert who consults with the state health department on the infectious disease. Fluent in Spanish, Zuroweste ended up contacting the Guatemalan and successfully treating him.
The man told Zuroweste that back home he had been exposed to a friend and a brother who each had the disease. He hadn't wanted to admit that in front of his co-worker, whom he barely knew, because of the stigma associated with tuberculosis. "I hope I don't die of TB," he told Zuroweste. He didn't.
To the doctor, the incident points to the need for professional medical translation services for patients with limited English proficiency, which is guaranteed in federal law but often ignored, immigrant advocates say. Without translation services, Zuroweste said, there are likely to be misunderstandings that result in medical mishaps, mistreatment and avoidable health care costs.
Nevertheless, the Trump administration intends to relax an Obama-era federal rule requiring that medical providers let patients know about their right to language interpretation services _ and for people with disabilities, communication assistance such as qualified sign language interpreters or written information in alternative formats for the visually impaired. The administration insists that the current requirements are onerous and costly for providers.
The change could have far-reaching effects: More than 27 million U.S. residents speak English less than "very well" or not at all, according to the U.S. Census Bureau.
The change is part of a larger administration proposal that also would relax nondiscrimination protections in health care for LGBTQ populations, women and people with disabilities.
The period for public comment ended in August; the administration could announce the final rule at any time.
Commercial health insurers opposed the original rules on language services adopted by the Obama administration and pressed the Trump administration to relax the rules. In an August submission to the U.S. Department of Health and Human Services, America's Health Insurance Plans, the lobbying arm of commercial health insurers, called the present rule "excessively burdensome while adding little value for consumers."
On the other hand, professional medical organizations such as the American Academy of Family Physicians, the American Academy of Pediatrics, the American Psychiatric Association and the American College of Obstetricians and Gynecologists are opposing the Trump revisions.
Under the proposed rule, patients would still have a right to language services, they simply might not know they do or how to go about getting those services.
Under the current rules, health care providers must have in-house plans on how they'll provide language services, and they must post in their offices that patients have a right to language services and steps they can take to get them. Providers also must include in "significant communications" with patients taglines in 15 languages that explain that patients have a right to language services and how to go about receiving them. Those notifications apply to assistance for non-English speakers and to those with impaired hearing or vision.
The rules also specify that non-English speakers have a right to qualified, professional interpreters, a signal that family members, and particularly minor children, are not sufficient to serve as translators.
Ed Haislmaier, a health policy expert at the conservative Heritage Foundation, called the current rules "regulatory overreach," "micromanaging" and "overkill."
Providers who serve minority communities already provide such language services, Haislmaier said. "You don't need to be so heavy-handed and prescriptive."
Others say the change would result in serious medical misfortune for those who don't speak English well.
"I think it's a very dangerous step," said Alexander Green, an associate professor at Harvard Medical School who studies language barriers in health care. "It's starting a process of eroding people's rights to high-quality health services at a time when we are on a trajectory to remove disparities in health care. This is a motion to turn back the clock and cause more disparities in health care."
The 1964 Civil Rights Act prohibits discrimination based on race, color or national origin in all programs or activities receiving federal funding. Many health care programs rely on federal funding, including Medicaid and the Children's Health Insurance Program, Medicare, veterans' health, financial assistance to hospitals and health insurance subsidies created under the Affordable Care Act.
Following passage of the Civil Rights Act, courts made it explicit that discrimination based on national origin included the failure to provide language services to non-English speakers. Subsequent actions, particularly by the Clinton and Obama administrations, added specificity to the requirements.
The Clinton administration extended the reach of the law not just to programs that received federal funds but to federal programs themselves. And the Obama administration issued instructions informing medical providers how to comply with the law.
The Trump administration has proposed to either weaken or eliminate those requirements. In its June filing of the proposed rule revision in the Federal Register, the administration said it was removing regulations that erroneously interpreted civil rights law, "caused confusion, and imposed unjustified and unnecessary costs."
Eliminating the requirements, it said in proposing the changes, would save "the health care system" between $147 million and $1.34 billion a year, though it didn't specify how it arrived at that range, or to whom those savings would accrue. HHS did not respond to a request for comment.
Many advocates for immigrants and health care access characterize the proposal as of a piece with other steps the administration has taken against immigrants, including, recently, the enactment of a rule that would make it harder for legal immigrants to gain citizenship if they use public resources such as Medicaid or housing assistance.
"Rolling back this regulation is the latest step this administration has taken in blatantly permitting discrimination to occur," said Mara Youdelman, managing attorney for the Washington, D.C., office of the National Health Law Program, a health care advocacy group.
Most states have adopted their own language requirements for health care providers and insurers. Their scope and the specifics vary widely.
Studies have shown that inadequate language services can result in consequential medical mistakes, including death. Patients may be unable to describe their symptoms for doctors or complete medical histories. They may not understand medication regimens or discharge instructions.
A 2010 study by the University of California, Berkeley School of Public Health, published by the National Health Law Program, of a medical malpractice carrier operating in four states found that 2.5% of the carrier's claims, resulting in nearly $2.3 million in damages or settlements, could be attributed to a provider's failure to provide adequate interpretive services.
Even without the changes sought by the Trump administration, compliance with the current language requirements is lagging, advocates say. "Right now, with the regs we have, we hear these stories of people with limited English proficiency not getting adequate access to interpretive services," said Kathy Ko Chin, CEO of the Asian & Pacific Islander American Health Forum, an immigrant health advocacy organization based in Oakland, California.
People who do not speak English very well come back from their medical providers, she said, "and really don't know what happened to them. They don't know what their medication regimen is, what it's for, and how to use it."
Studies bear out Chin's impression of a lack of compliance. A 2016 study in Health Affairs found that in 2013, more than a third of 4,514 U.S. general hospitals did not provide language services, including a quarter of those in "high-need" areas, where more than 10% of the surrounding population spoke limited English. (That survey was conducted before the Obama administration had published its rules on language requirements.)
Medical providers that comply sometimes have interpreters on staff but more often rely on professional medical interpretation services, which can on very short notice get trained interpreters on the phone or video conferencing with practitioners and patients.
Andrea Caracostis, CEO of Hope Clinic in Houston, which operates four health centers serving 20,000 people, most of them multilingual, recalled a recent case in which a Chinese immigrant brought her 6-year-old daughter to one of the clinics one morning. The child was apparently suicidal, smashing her head into the walls. The clinic directed the woman to take the child to a nearby hospital with psychiatric services. That evening, a clinic volunteer dropped by the hospital to check on the mother and child.
The volunteer found them still in the waiting room, unseen because no translator had been found.
"Can you imagine," Caracostis said, "a child who was suicidal in an ER for 12 hours because there was no translator?"