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Undocumented immigrants face barriers that can affect end-of-life care, Stanford researchers suggest

When gravely ill undocumented immigrants wait to seek health care, they’re less likely to have end-of-life care that follows their wishes.

When it comes to health care, the United States is not a land of opportunity for many undocumented immigrants.

Language barriers, fear of deportation and lack of insurance often dissuade people who are born in another country and not U.S. citizens or legal residents from seeking medical attention here until they're seriously ill.

Not only can that allow their health to deteriorate, but it also can interfere with important decisions that influence the quality of their end-of-life care.

It's a pattern Stanford fellow Christopher Metchnikoff, MD, observed frequently when he worked at a safety-net hospital as a resident.

"It's sort of an invisible population where there's not a lot of data being collected," he told me, "but in practice as a physician working in these settings, you realize it is very important, a very common situation."

In a new paper in the Journal of Pain and Symptom Management, he and his colleagues explain how U.S. health care policies can affect undocumented immigrants, including access to care, health and ultimately life expectancy.

Simply put: They suggest that unauthorized immigrants in the United States are likely to die younger compared to the rest of the population.

In one case from the authors' experience, a 32-year-old construction worker with advanced heart disease refused a free clinic's request that he procure a photo ID, because he feared he'd be deported. He was unable to obtain primary care or cardiac medication between hospitalizations, and he died in the emergency room, leaving behind a wife and young son.

Would the outcome have been different if the patient had been able to access care outside the hospital? Metchnikoff told me it's hard to know, but "there's a chance" that care could have made a difference,  given what is known about the benefits of preventive care, early treatment and regular follow-ups.

What's more, when gravely ill undocumented immigrants wait to seek treatment, they're less likely to have end-of-life care that follows their wishes. The authors suggest that, if undocumented immigrants don't have a regular source of medical care, they probably haven't discussed advanced-care planning with a provider or designated a health care proxy; and they will likely have a harder time obtaining hospice care, as they often don't have the means to pay for it and many agencies limit their enrollment.

Then there's the broader issue of dignity in death.

It's difficult for undocumented immigrants to see family members a final time, because they're unable to travel or bring their loved ones to their bedside. Fear of deportation can keep patients from disclosing their real names to their providers and hamper efforts to locate next-of-kin. As a result, death certificates may be inaccurate; cremated remains may be scattered in locations unknown to family members; and relatives may never be informed of the death of a loved one.

The paper touches on different approaches that other countries take to immigrant health care, including policies in the European Union allowing specific services for unauthorized immigrants or allocating money for their care.

Metchnikoff said the United States may benefit from exploring alternative policies.

"Sometimes having access to earlier outpatient or continued outpatient care is a cost-saving measure to the system as a whole," he told me. "Also, it seems to be more in line with advocating for whomever is in front of you, and trying to provide them adequate treatment both for the short term and the long term."

Photo by Forrest Cavale

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