Treating patients afraid to present
Undocumented patients pose a challenge to medical care, as they have trouble accessing and affording services. The current political environment is making it tougher for those who need help.
Effectively treating undocumented patients has always been difficult for physicians, given that lack of insurance and fear of deportation can delay diagnosis and hamper medical care, sometimes to a life-threatening degree. Some fear that the situation will worsen in an existing anti-immigration political climate.
Roughly 11 million undocumented individuals live in the United States, nearly three-fourths of whom were born in Mexico or in Central America, according to an analysis from the Migration Policy Institute, a Washington, D.C., nonprofit think tank. A 2017 report from the nonprofit Institute on Taxation and Economic Policy in Washington, D.C., estimated that undocumented immigrants contribute nearly $12 billion annually in a mix of state and local taxes, among them sales, property, and personal income. However, access to affordable health care has traditionally been limited.
The numbers of undocumented residents in the U.S. are likely to soon increase as people originally from Central America, Haiti, and Sudan lose their temporary protected status, according to a New England Journal of Medicine perspective piece published on May 3, 2018. Meanwhile, people who are in the U.S. legally under the Deferred Action for Childhood Arrivals (DACA) program also remain vulnerable, potentially placing their jobs and health insurance at risk.
“There is not the most welcoming climate for immigrants right now,” said ACP President Ana María López, MD, MPH, FACP. Dr. López, who practiced in Arizona during that state's controversial SB 1070 “show me your papers” law, recalled how community health centers there reported a decline in patients because “people were afraid.” For instance, someone who is the sole breadwinner for his or her family may repeatedly postpone getting a medical problem checked out, fearful of heightening deportation risk, she said.
“Fear is a really powerful emotion,” said Dr. López, vice chair of medical oncology at Sidney Kimmel Cancer Center at Thomas Jefferson University in Philadelphia. “It's not only fear for themselves, but fear for their families.”
Gaps in care
In a 2011 position paper about national immigration policy, ACP leaders stressed the need for national policy changes to improve health care for immigrants, regardless of their legal status. “Access to health care should not be restricted based on immigration status, and people should not be prevented from paying out-of-pocket for health insurance coverage,” they wrote. They also cited the public health risks and costs incurred when individuals delay treatment or skip vaccinations and other basic care out of fear of prosecution.
Several recent studies have attempted to quantify gaps in care for undocumented patients, as well as the emotional strain on their treating clinicians. One recent study, looking at hospice access for undocumented immigrants, found that only two-thirds of the 179 responding agencies offered unrestricted enrollment. (The researchers noted that one limitation of the study, published in April 2017 in JAMA Internal Medicine, was that an additional 51 agencies responded to the rest of the survey, but not the questions about undocumented immigrants.)
In another study, published in the July 17, 2018, Annals of Internal Medicine, researchers interviewed 50 clinicians in Denver and Houston about the emotional impact of providing emergency-only dialysis to undocumented immigrants. They identified various drivers of burnout and moral distress, including emotional exhaustion from witnessing needless suffering, fears of jeopardizing patient trust, and frustrations with using costlier emergency services instead of routine dialysis.
The emotional impact on clinicians has been a worry for some time, but this study is the first effort to quantify its impact on professionalism, said nephrologist Ashwini Sehgal, MD, an ACP Member and professor of medicine at Case Western Reserve University in Cleveland, who wrote the accompanying editorial. Any hallmark of strain is worrisome, and more than one can exert a cumulative effect on clinicians, he said. “I think that takes it up to another order of magnitude in terms of how concerned we should be.”
Heather Laird-Fick, MD, FACP, an associate professor of medicine at Michigan State University, described how a recent end-of-life case she helped write up grew out of a sense of helplessness and frustration. The case report, published in April 2018 in the Journal of Palliative Care, detailed the circumstances for an undocumented Mexican woman who hadn't sought medical care for two years after getting chemotherapy for cervical cancer. By the time the woman returned, she had “intractable pain to a central chest wall mass,” according to the case report. She was diagnosed with metastatic cervical cancer, and her options were limited to end-of-life care.
“There was nothing that we could offer her to help her,” Dr. Laird-Fick said. “It just felt really overwhelming, particularly for the residents who were involved with her care.”
Building cultural competency
A physician might suspect that someone is undocumented if the patient lacks insurance and a Social Security number, said Maria Maldonado, MD, FACP, who teaches internal medicine residents at The Mount Sinai Hospital in New York City. In those circumstances, she advises residents to tread a bit more carefully as they begin documenting the patient's social history.
Instead of asking where someone was born, Dr. Maldonado said, perhaps query, “Where did you grow up?” Or, “Did you grow up around here?”
Dr. Maldonado said she doesn't recall ever including a patient's legal status in the medical record. “I don't really see the need to put that in the note,” she said. She pointed out that a patient's legal status is only relevant for a few treatment-related reasons, such as that it might limit referral options for additional tests or subspecialist care.
Patients who are undocumented may have also experienced related trauma, Dr. López said.
“The whole experience of traveling can be very traumatic,” she said. “Or they may have experienced trauma before they left, which compelled them to leave.”
Doctors can open up the discussion, Dr. López said, by saying that other patients who have weathered similarly difficult circumstances have found that the memories could be troubling and asking if it would help to talk to someone.
“I think what's important is to be consistent,” said Dr. López, noting that patients should be asked again over a series of visits. “The patient may not open up that first time. To be clear that as your doctor, I care about you and I'm here to help in any way possible.”
In situations where a language barrier inhibits free-flowing conversations about trauma and myriad other medical issues, it's best to tap the skills of a trained medical interpreter, whether via phone or someone onsite, Drs. López and Maldonado stressed.
When a friend or family member fills that role, then the patient loses his or her privacy, or that individual might inadvertently filter out key details, said Dr. Maldonado, who is the director of education for cross cultural and patient centered communication at Icahn School of Medicine at Mount Sinai. Another risk, she said, is that “It becomes a conversation, if it's not done right, between you and the family member as opposed to you and the patient.”
A good rule of thumb is, if at least 10% of the practice's patients speak a particular language, then some written materials should be in that language, and the practice should have access to a qualified interpreter, Dr. López said. If someone on staff is fluent, ask if he or she would like to go through formal training to become a medical interpreter before assuming that practice role, including additional compensation, she said.
“It recognizes that this is a skill—it is a critical clinical service,” Dr. López said, “as opposed to pulling somebody from whatever their regular job is and saying, ‘Hey, can you come and interpret?’”
Efforts to advocate
When trying to help their 43-year-old undocumented patient, Dr. Laird-Fick and her team of residents quickly learned that a live interpreter rather than a video interpreter was needed to assist with difficult discussions about end-of-life care.
Still, communication difficulties can extend beyond language itself, Dr. Laird-Fick said. Along with discomfort about discussing death and related symptoms, the concept of hospice may be foreign. And the word itself in Spanish, for example, “hospicio,” can translate as “orphanage” or a “place for poor people,” creating misunderstandings.
Moreover, in-home hospice was not a feasible option for Dr. Laird-Fick's patient. The woman, who had worked as a migrant on a pickle farm, shared an apartment with four other undocumented workers, who might not have been amenable to strangers coming into their home, a not-uncommon scenario, Dr. Laird-Fick said. “If one person is undocumented, I would imagine other people in their network or their home setting might also be undocumented, so there may be some suspicion about letting people come into their home, particularly as the environment about deporting people has really gotten more intense.”
“The likelihood of getting any uninsured patient, regardless of legal status, into a hospice program can vary widely in different regions of the country,” said Nathan Gray, MD, who specializes in hospice and palliative medicine and was involved with the recent hospice access survey. “In most states, undocumented immigrants who are uninsured are completely reliant on charity hospice care from local agencies, and such charity enrollment may be hard to get in locations where demand is high,” said Dr. Gray, an ACP Member and an assistant professor of medicine at Duke University School of Medicine in Durham, N.C.
Primary care physicians should get to know the capacity of their local hospice agencies for providing care on a charity basis, Dr. Gray said, and learn their approaches. “Most don't ask about citizenship, but they may not have the resources to take on many patients who are uninsured.”
Also, see what local hospitals can provide, Dr. Gray said. “Most hospitals now have inpatient palliative care programs, and many are developing outpatient palliative care clinics,” he said. “While these resources may not be able to match the benefits of in-home care with hospice, they can provide support to patients or their family members to help manage symptoms toward the end of life.”
Even better, physicians should familiarize themselves with treatment options for immigrants in their community before encountering a specific patient care situation, Dr. Maldonado said. One approach is to reach out to a local legal aid society or another type of service organization that works frequently with this population, she said. Also, physicians can check if there are any federally qualified health centers nearby, as those centers provide care regardless of legal status.
In the case of the Mexican migrant woman, after consulting with her daughter in Mexico, it was decided that she should return home with some financial travel assistance and a small supply of pain medication. It was sending her “into the unknown,” said Dr. Laird-Fick, pointing out that the woman had moved to the United States in the first place because her husband had died and she couldn't support her daughter.
“If she returns back to an area where there's a lot of poverty, is she going to be able to eat?” Dr. Laird-Fick said. “Will they have the resources for even very basic things, let alone for medicines or other things that might help ease her suffering?”
Building trust
If a patient is known or suspected to be undocumented, it's important that physicians provide reassurance that their focus is on medical care rather than immigration status, Dr. López said. Physicians should also work within their larger health systems or organizations to make sure that message is uniformly sent to patients from the front desk forward, she said.
For example, a JAMA viewpoint piece published on Dec. 5, 2017, argued that hospitals should develop clear policies and procedures and related training for what staffers and clinicians should do if agents from Immigration and Customs Enforcement (ICE) come to the hospital. “Hospitals can conduct patient awareness campaigns to inform patients that their personal information will not be shared with ICE,” the authors wrote.
Even when physicians have built a trusting relationship, they may be constrained in terms of which referrals they can make due to a patient's lack of insurance or a reluctance to interact too frequently with the health system, Dr. Maldonado said. “When you're caring for patients who are undocumented, for whom getting specialty care is problematic, you need to truly be a great generalist, a great general internal medicine doctor.”
While the physician's role is to advocate for the patient's optimal medical care, regardless of background or legal status, some doctors likely harbor bias against undocumented immigrants, Dr. Maldonado said. But just as those physicians should guard against any implicit bias they might feel for other reasons, so should they in these circumstances, she said.
“Notice when it comes up for you,” Dr. Maldonado said. “You need to address it. And you need to come down on what's going to be most productive for that person who is front of you, for your patient.”
