Nursing without Borders
Providing health care to undocumented patients or mixed status families poses special challenges, according to an article in the June issue of National Nurse. Heather Boerner, a journalist based in San Francisco, wrote this story with the support of a 2012 Dennis A. Hunt Fund for Health Journalism Grant. A previous version of this story previously ran on KPBS.org.
Marta had a secret. And Laarni San Juan, a public health RN, didn’t know it until she showed up at Marta’s home for her regular post-partum appointment. San Juan practices in the San Francisco Bay Area and had been visiting this woman, whom we’ll call Marta¹, since she was four months pregnant.
Now, a few months after the child’s birth, Marta interrupted their usual conversations.
“I have something to tell you that I wasn’t sure you needed to know,” San Juan remembered Marta saying. She was visibly nervous and wouldn’t meet San Juan’s eyes. Her tone was apologetic.
Then Marta’s story unfolded. In previous appointments, San Juan had encouraged Marta to sign up for food stamps. Marta had demurred. Then, San Juan had offered Marta a job lead. When Marta was again noncommittal, San Juan was confused. Why wasn’t Marta taking her up on opportunities that could help her family? San Juan didn’t push. But she did wonder.
Finally, on this day, Marta blurted it out. She wasn’t resistant to help. A recent immigrant, Marta was in the United States without papers. She couldn’t apply for food aid or take the job, even though she wanted one.
For San Juan, it was an “aha” moment.
“Now I get it,” San Juan remembered thinking. “As a person and as a recipient of hearing her truth, I get it now why some people can be resistant.”
All over the country, RNs are working to provide exemplary care, no matter the age, income, race, or national origin of their patients. But if RNs and other healthcare providers are not sensitive to their patients’ immigration status and understand all the ramifications of living life in fear of government discovery or without access to services that legal residents take for granted, they, like San Juan, can miss things. Or assume things they shouldn’t—even something so basic as what it means to be “healthy.” Doing so can have very real consequences for not only individual undocumented patients, but society as a whole.
Having a universal, Medicare system that treated all residents equally, premised on the idea that medical care is a basic human right, would eliminate most of the barriers for undocumented people to access healthcare in this country. But until then, nurses can help by being more knowledgeable and aware practitioners.
That’s what San Juan has done. She has adapted her practice to account for immigrant patients who may be undocumented. Without being too intrusive, she drops questions about how long they’ve been in the country, whether they like it here, and whether they might need an immigration attorney. Instead of wondering about a mom-to-be’s immigration status in passing, she said, “the whole immigration aspect of one’s livelihood crosses my mind twice, not once.” As a result of her experience with Marta, she believes she’s become a better nurse.
About 11 million immigrants live in this country without papers, but that number masks a world of complexity. In reporting this story, I met refugees seeking asylum who are undocumented until their cases are decided, a years-long process. I met families brought to the United States under false pretenses and forced to work with little or no pay. I met a stylish 22-year-old brought here as a child who talked about yoga and vegetarianism. Mostly I met Mexican immigrants, but I also talked to Filipinos and Peruvians. This tracks with national averages. More than half of all undocumented immigrants in the United States are from Mexico, but people from Central America, China, and the Philippines are also represented.
It’s quite common today to encounter “mixed status” households: some members of a family are undocumented, but the rest are citizens who were either born here or who married citizens. As we will learn, sometimes this “mixed status” in families complicates access to healthcare.
While some undocumented immigrants are new arrivals, many others are not, having either lived here for decades or grown up here since childhood.
The majority of immigrants I met were low-paid workers—the landscapers, kitchen staff, hotel janitors, house cleaners, farm laborers, and construction workers who make up significant portions of those workforces. Many had been injured in workplace safety accidents.
It’s nearly impossible for such immigrants to move here legally.
If a worker doesn’t have immediate family members who can sponsor their petition for a green card, the waiting list runs more than a century.
Yet the U.S. economy heavily depends on and benefits from their labor contributions. About 90 percent of undocumented immigrants have regular jobs or periodic work as day laborers, according to the Public Policy Institute report. Movement by Mexican immigrants across the border tracks closely with U.S. employment rates. According to a policy brief from the Public Policy Institute of California, unauthorized immigration goes up when jobs are plentiful and drops when the economy suffers. When the Great Recession hit, undocumented immigration plummeted to its lowest levels in more than two decades.
Though undocumented immigrants do not qualify for most government services and typically avoid seeking out assistance for fear of being discovered and deported, they pay a significant amount in taxes.
In 2010 alone, they paid about $11.2 billion in state, local, and sales taxes, according to the Institute for Taxation and Economic Policy. Immigrants overall contributed a surplus of $115 billion to the Medicare trust fund between 2002 and 2009, meaning that they contributed that much more than they used. And, according to Social Security data obtained by The Medicare NewsGroup in 2011, undocumented immigrants working under false Social Security numbers contribute about $15.75 billion to Social Security’s so-called “earnings suspense file” between 2001 and 2010.
That file is where Social Security puts money deducted from paychecks when the employee name and Social Security number don’t match up. Those funds are then deposited in the Medicare trust fund.
And yet, undocumented people access few services for all that money. About 60 percent of undocumented immigrants don’t have health insurance. They aren’t eligible for Medicaid, which is for low-income citizens and legal residents, except when they’re pregnant. Community clinics do their best to serve undocumented immigrants and other low-income Americans. Some states, including California, allow emergency Medicaid to cover the costs of undocumented immigrants who need emergency room care.
Largely, however, much like uninsured people who don’t qualify for government programs and can’t afford their own insurance or to pay out of pocket, undocumented people are left to fend for themselves. Get a group of young undocumented people together, as I did in San Antonio, Texas, and ask what they do when they’re sick, they will surely start trading stories about medicinal herbs and Vick’s VapoRub enlisted in the treatment of just about everything.
The biggest healthcare reform debate of this decade, the fight over Obama’s Affordable Care Act, completely ignored the needs and voices of undocumented immigrants. And the modest improvements in expanding access to Medicaid and insurance coverage through the exchanges (a set of government-regulated and standardized healthcare plans) and subsidies under the law will not be realized by undocumented people, either. They simply aren’t eligible.
If anything, the Affordable Care Act may hurt the 40 percent of undocumented immigrants who, according to the American Medical Association’s Journal of Ethics, do have insurance through their jobs: If employers decide to farm out health insurance to the exchanges, all those employees will be required to provide Social Security numbers that must be vetted before they can use the exchange. Immigrants who fear detection could opt out of the exchanges. Or they could apply and be turned down. In that way, they would lose both their coverage and their employer’s subsidy.
Of course, in a strange political twist showing how politicians scapegoat undocumented immigrants, Congressional Republicans in May argued that undocumented immigrants ought to be required to meet the individual mandate and purchase health insurance without subsidies or access to Medicaid.
While it’s not true that undocumented immigrants use the emergency room more than legal permanent residents or citizens, healthcare reform could also have unintended consequences for undocumented immigrants who do seek care there. As Americans move to coverage through an exchange, the individual mandate, or Medicaid, hospitals’ uninsured populations will be largely undocumented. In communities where the animosity against undocumented immigrants is strong, opponents of healthcare reform may use that fact to argue against the law that prohibits hospitals from turning away indigent patients.
“As the percentage of those not covered becomes largely undocumented, the political will to continue to address the legitimate health needs of that population may not be as strong,” said Steve Eldred, a program manager at the California Endowment. “As there start to be discussions about where to put resources, there are not going to be as many people advocating for continuing that basic level of care.”
If they didn’t face enough hurdles already, there are moves around the country to make seeking care more dangerous for undocumented immigrants. Immigration officials have staked out migrant health clinics in Florida, Georgia, and New York. And Arizona legislators proposed this year that hospital staff should have to alert immigration officials if someone shows up at the ER without a Social Security number.
These justifiable fears—the fear of being asked to provide a Social Security number or otherwise prove immigration status at a doctor’s office, of health providers being enlisted as an “extension” of the government, and of being tracked, discovered, deported, and separated from family members—leads undocumented people to largely avoid contact with the established medical system.
So it’s not surprising that, as Michael Gusmano, a research scholar at the bioethics group The Hastings Center, puts it, “If there is a problem among undocumented patients, it’s that they underuse health care.”
Ask most undocumented immigrants if they’re healthy, and they’ll say yes. For the most part, this is true: Immigrants as a whole are healthier than their native-born counterparts, living an average of 25 percent longer than white native-born Americans and 43 percent longer than black native-born Americans. They are less likely to have chronic conditions that clog hospitals, such as diabetes and heart disease. Researchers attribute this to healthier diets and the fact that immigrants must be young and healthy enough to make the trip here. But this effect declines the longer people have lived in the states.
If you keep talking to some of the people I interviewed, though, you will often find longstanding and neglected health problems. This happened over and over again, revealing another facet of undocumented patients’ health of which nurses and other healthcare providers should be aware: Undocumented people—especially those who came as adults—have a different idea of what it means to be “healthy.”
Basically, to the majority of undocumented people I talked to, if you are able to show up for work, then you are healthy. Many folks I interviewed felt a lot of pressure to downplay health problems and keep working. Not only is earning a paycheck their whole reason for moving here, they typically work in positions that do not provide sick leave or any pay when they are absent and they may have many others depending on them financially. And they don’t have many options for healthcare. Because of all this, many of the undocumented immigrants I spoke to seemed to be in denial about the severity of their health problems. Healthcare providers must be persistent in taking health histories and in asking questions.
For example, one woman I interviewed said she was healthy—she certainly looked healthy—but then she told stories about her family treating her asthma with Vick’s VapoRub, and collapsing at home from an asthma attack.
Another man who worked as a construction worker claimed he was healthy, no problems, but turned out to be taking medications for diabetes and high blood pressure, and had no idea how to use his glucometer.
Recently, Norma Navarro, 28, took her kids to a federally qualified health center in San Diego, California’s City Heights neighborhood for a dental checkup. The results:
Both her daughter, Aneth, 10, and son Angel, 7, had cavities. The clinic was ready to schedule an appointment for Angel’s fillings as soon as possible. But they had to figure out what to do for Aneth. The reason? Angel was born here. He’s a citizen and therefore eligible for the Children’s Health Insurance Program. Aneth was born in Mexico and brought here as an infant. Aneth and her parents are undocumented.
For one month a year, Aneth is eligible for the state’s Children’s Health Development Program. After that, the family has to scrape together the money to get her help, or forego it.
Like many of the 8.8 million multi-status families in the United States, Navarro had a tough decision to make: Get Angel the care available to him right away, or allow both to suffer until they could get the same care.
“I told them to wait to schedule dental care for my son and to please hurry to work on authorization for my daughter,” said Navarro in Spanish.
Invariably, Navarro has to deal with questions from her daughter: “Why does my brother get help first and why don’t I?” Or, “Why did they tell you they could help you make [Angel’s] appointment and not mine?” The answers are hard to explain to an 11-year-old.
Navarro is a devoted mother, a regular fixture at her children’s school, Central Elementary. She reads to kids on Family Fridays and encourages their studies. When her children are in the room, she focuses on them, whispering in her soft voice, smoothing their hair, soothing them.
She said she doesn’t want to treat her children differently, even if the government does. So sometimes this means Angel gets periodic healthcare or his care gets delayed. And Angel is not alone. According to a 2001 study in the American Journal of Public Health, citizen children of immigrant parents are twice as likely as native-born families to go without routine medical care.
Given the circumstances, Navarro tries to do what is right. When Angel had stomach pain a little while ago, Navarro got him into Mid-City Community Clinic right away. The doctor determined he had a hernia, and just like that, he had an appointment at Rady Children’s Hospital and surgery. He recovered just fine.
When Aneth gets urinary tract infections, a recurrent problem, she’s had to wait to get care until the family could put together the sliding scale co-pay for Mid-City, along with the cost of antibiotics.
Last year, Aneth came home from school in a foul mood. Generally a happy child, on this day, Aneth had had enough, she told her mother. She was tired of it.
"It,” it turned out, was teasing from the other kids at school for her speech impediment. The little flap of skin that holds Aneth’s tongue to the bottom of her mouth is too short. When she speaks, she can barely move her tongue and her words come out slurred and muffled. Some kids are not kind.
“She came home very sad and,” Navarro paused, “and she told me on that day that she hated this life and she didn’t want to live.”
Navarro broke down in tears.
Isolated from the traditional medical system, families have always worked their informal networks to get care for their loved ones. Nancy Flores’ family is a good example of this. For most of the 23-year-old’s life, she has relied on the kindness of citizens to provide herself and her Peruvian family with care. Her parents’ employers, a wealthy couple in Austin, often brought Flores and her sister with them when they took their son to the doctor. For everything else, she relied on her mother’s herb garden. When she was a little older and her teeth were coming in in such a way as to prevent her from closing her mouth, her parents’ employer found a surgeon who would break her jaw and reset it.
“The doctors had to have known” she didn’t have any papers, she said. She pinched her thumb and fingers together in pantomime of filling out a form. “They had to get to the line asking for a Social Security number”—here her hand stopped, and then glided away again—“and skip over it.”
As far as she could remember, they never asked. And she certainly never told.
Now, you would never know that Flores, who asked that the family’s real name not be used, had ever had a problem with her jaw.
But when her mother was diagnosed with neck cancer a few years ago, it wasn’t so easy. Six hospitals turned her away before Flores tracked down a former school counselor who was doing a residency at a local hospital. He got Flores’ mother in and has made sure she had proper follow up. The cancer hasn’t come back.
Nurses and other healthcare providers treating undocumented immigrants have similarly been forced to resort to any means necessary to get care for their patients.
That’s the position family nurse practitioner Penne Jaster is in most of the time. Jaster is a one-woman safety net. She runs the Faith Family Clinic in San Antonio, Texas, a series of white-walled rooms in a medical building in the northwestern part of the city that serves some of the city’s 380,000 working poor. FFC, like most clinics that deal with the poor, doesn’t ask if its patients are undocumented. But judging by the number of people in her practice without Social Security numbers, at least a third of her patients are here without papers.
So she gets creative.
Jaster’s been known to hit the books and try to work out a treatment plan for patients with diseases that are outside her wheelhouse, like rheumatoid arthritis. But at least once a month, a patient needs something more than even she can provide: a surgery, cancer treatment, an intervention for diabetes that’s more out of control than she can manage. That’s when she and the clinic’s executive director, Jim Young, have to call on their own informal health network.
“I go look for [their Social Security number] and if they don’t have one,” she said, “I decide, ‘Can we do this, can we not, and if we can’t, what do we do?’”
What they do, often, is send Young out to see if he can conjure a clinician. Often, this leads him to church.
Many Sundays, you can find Young at one of San Antonio’s 1,200 churches. He talks up the clinic, which is only three years old, encourages churches to put the clinic in their budgets, and, not so subtly, recruits specialists.
Sometimes he attends services in the company of a specialist who already volunteers with the clinic, who has a lead on someone else who might provide care at the clinic.
If they meet a prospect, Young goes into promotion mode. He suggests they volunteer with the clinic, emphasizing the fact that at FFC, they don’t take Medicaid, Medicare, or any other insurance, so there’s no coding, no reimbursement, no formularies. There’s more time with patients—30 minutes at a minimum, Jaster said—and a chance to practice medicine, not the business of health care.
“When push comes to shove and the patient needs something, we just need to find it,” Young said. “We don’t manipulate, but we tell the stories and present the case as compellingly as we can, and we stay after it. We just knock on their door until they’re tired of us knocking. They get rid of us by doing it.”
Cultural competency with immigrants who delay or avoid care because of their immigration status comes more easily to Anahi Esteban, a licensed practical nurse, than it might to others in the health field. That’s because, as an undocumented immigrant from Mexico, she lives what they live, feels what they feel, fears what they fear.
Most nights, you can find Esteban at the rural Arkansas home of her patient, Momma B, an 85-year-old woman with terminal breast cancer. When Momma B awakens during the night, it’s Esteban’s round, smiling face that she sees. During the day, you can usually find Esteban at Cossatot Community College of the University of Arkansas, where Esteban is taking prerequisites to apply for nursing school. She wants to be a registered nurse.
The desire to practice nursing runs in her family. When the whole family was still living in Mexico, Esteban remembers sitting next to her older sister as she studied for her nursing licensing exam. She remembers her mother’s herbal teas. “She could make a simple chamomile tea that could make anyone feel better,” she said of her mother. “We say she has healing hands.”
But the path to her dream job hasn’t been easy for the 25-yearold. Esteban, who came to this part of Arkansas from Mexico in 1999 without papers, is struggling. There have been times when Esteban, despite her LPN, has worked at a local donut shop to make ends meet. She’s cleaned houses. She forks over $3,000 in out-of-state tuition to her community college to prepare for nursing school. Then there’s the rent and the car insurance and the money she gives to her mom every month to help her parents make ends meet.
Most of the undocumented people she knows work at the poultry processing plants run by Pilgrim’s Pride and Tyson. In a town that was almost all white years ago, Latinos now outnumber whites, and many are undocumented. The 2010 Census counted about 6,000 residents, but Esteban suspects there are far more who are uncounted and undocumented
In De Queen, there are community clinics, but at least one is onlyopen three days a week, unable to support a full-time staff of nurse practitioners, RNs, and receptionists.
Most go to the local midwife for care, but sometimes they come to Esteban because she is considered something like the neighborhood nurse. Because of her LPN and because she worked for a while with a local midwife who is often the first person undocumented residents of this town visit when they’re sick, Esteban sometimes arrives home from school or overnights at Momma B’s to find someone on her front steps, asking her to read their vitals. Often, she will. Sometimes, she accompanies them to the De Queen Medical Center.
There, she sees RNs doing the job she’d love to be able to do and that she, with her unique knowledge and sensitivities, knows she could do well. In what appears on the surface to be a contradiction, Esteban says that nurses must both be aware and not aware of whether a person has a nine-digit number. If patients are not taking their medications or showing up for follow-up appointments, pause and ask why, she urged. Patients may seem noncompliant, but their behavior may stem from their immigration status, language barriers, or fear of not being able to pay, not just because they’re in denial or obstinate.
Nurses must recognize and acknowledge the special needs of undocumented patients, but then look beyond it. In other words, it matters, but it shouldn’t matter. “What they taught me in nursing school is that you see the human being, the soul, the person,” she said. “You don’t see the legal status. You don’t see how much money they have. You don’t see if they have insurance or not. You see the person as a whole.”
So how do we best treat the Martas, the Aneths, and the rest of the undocumented immigrants so integral to our communities? We start by treating them first and foremost as patients, and work to bridge the gap created by politics, bureaucracy, language, and culture. And, next, we must work to change our healthcare system into one that operates from the principle of healthcare as a human right. Immigration status should not be a determinant of whether a patient has access to healthcare.
One thing clinics and other public health programs can always do is better outreach to undocumented communities. While some of the immigrants I interviewed said they had no problem going to see a doctor, many more said they didn’t even know there were clinics that would see them. Potential patients avoid settings where they may be put on the spot to provide a Social Security number, or may not understand or trust that a clinic and its healthcare providers are not an extension of the government.
Alma Graciela Sanchez, a 30-something house cleaner in San Antonio, Texas insisted she’d never been to the doctor for herself in the 11 years she has lived in the United States. She was healthy, she said. Then I asked her if she would go to the doctor if she knew the clinic would treat her even if she were undocumented.
She burst into tears.
“Why are you crying?” I asked.
“A mother needs to be healthy for her son,” was all she would say.
The clinics themselves certainly didn’t advertise whether they welcomed undocumented patients, perhaps rightly for fear of drawing unwanted attention from immigration authorities.
We can also work to remove language barriers for immigrants seeking health care. Research indicates that patient care quality drops with language barriers and immigration status. A 2004 report from the Kaiser Family Foundation found that, more than their naturalized peers, non-citizen immigrants have a harder time communicating with their care providers. This is especially true of monolingual Spanish speakers. One study, conducted by the University of Texas, found that providers often considered patients “difficult” when there was a language barrier.
Some of the most innovative care, free from stigma and bureaucracy, for undocumented people I saw was being provided in schoolbased clinics that don’t ask for documentation. Developing a greater number of alternative settings for providing healthcare, places like school where undocumented immigrants already feel comfortable and a level of trust with officials, would surely help undocumented folks gain greater access to medical care.
Aneth and Angel’s school opened a healthcare clinic in 2010. Open part time and available to all students and their siblings under age 19, the clinic is staffed by La Maestra Community Health Center and Mid-City doctors, and nurse practitioners. Unlike clinics in the neighborhood, the one at Central Elementary School is quiet and uncrowded. Because of the complexity of charging in a public building, the services are free.
Now, instead of waiting for her one month of services a year, Aneth is able to get medical help when she needs it. At an appointment at the school clinic in December, the doctor told Aneth and her mom that there’s a minor surgery—a snip of that flap of skin holding the tongue to the mouth—that could allow Aneth to enunciate clearly.
Aneth’s eyes lit up, Navarro recalled. “Mommy, am I going to get a surgery?” Navarro remembered her daughter asking her. “I’m going to get a surgery that will help me?”
“Yes, yes. Perhaps,” Navarro hedged.
“I don’t want to give her any illusions,” she said, “until we know first hand that it’s something she can acquire.” But it was a start.
Today, San Juan, the public health nurse, says her practice has become more sensitive to the undocumented. With Marta, whom she continued to see after her revelation, she listened sympathetically as Marta explained that she didn’t want to use any government services for fear of having her 6-month-old taken away from her. San Juan began to ask her if she planned to try to become a legal resident, and what steps she would need to take to accomplish that.
With new clients, she said she’s simply more aware of the immigration issue than she was before. She still doesn’t ask outright the immigration status of the mothers she visits, but she recognize that it could be a barrier to accessing care. Since Marta, at least two other moms have come out to her as undocumented.
“I still provide the same compassionate care,” she said. “It’s just deepened my empathy for those moms like Marta, and there are many like her, who live in that constant, daily fear.”
Heather Boerner is a healthcare journalist based in San Francisco. She wrote this story with the support of the Dennis A. Hunt Fund for Health Journalism, a program of the USC Annenberg School of Journalism’s California Endowment Health Journalism Fellowships. A portion of this story previously ran on KPBS.org.