Photo: Palliative care patient Gil García García with his niece Fatima. (Read Part 1 here.) Read in Spanish.
LOS ANGELES -- When Gil García García began to feel a sharp pain in his left foot, he didn’t think it was important.
"Two weeks later, I could not walk. I needed help to get up. I had a constant and bad headache," García recalled in a quiet voice, now with little strength.
In October he was rushed to a hospital emergency room at the University of California, Davis. The diagnosis was devastating: skin cancer, or melanoma, which had invaded his head, lungs, stomach and left leg.
Facing an incurable disease
Like many undocumented immigrants who have worked a lifetime in this country, García faced a dilemma when he was diagnosed with an incurable disease.
They often do not know whether to stay in the U.S. to receive the limited emergency medical treatment allowed given their immigration status, or return to their home country to spend the last stage of their life with family members who they often have not seen for decades.
"I have not seen my four children for 20 years," said García, now age 62. He came from Cuernavaca, Mexico in 1994 to work in California.
"I worked hard as an assistant construction worker and in landscaping. I needed to send money for my children’s education in Mexico. That’s why I came," he explained.
His niece, Fatima García, a dreamer, takes care of him day and night. She has taken the role of a nurse at home and is the only family he has in the United States. Due to the severity of her uncle’s health, she explained, they tried to get a humanitarian visa so some of their children in Mexico could come to see him.
"Now we're thinking it would be a better idea to take him to Mexico,” Fatima said. “But he is concerned because he knows that if he gets worse, due to his immigration status, he may not return for medical care.”
She added, “Also, he has high hopes of seeing his children again. A humanitarian visa does not allow all of them travel to the U.S."
Garcia was able to receive medical care through the Medi-Cal program, California’s name for Medicaid for people with low incomes. Fatima explained that her uncle qualified for the program because he is jobless and very ill. “He hasn’t committed fraud, or any offense. That's why he could get medical care without charge," Fatima went on.
But as a patient with a terminal illness, he was not offered palliative care for those at the end of life. She had not heard of this emerging kind of care, which improves dying patients’ quality of life by treating their pain and symptoms, such as nausea, while also providing medical treatment as needed. Palliative care should start well before hospice care, which offers only comfort in the final six months of life.
Sadly, Gil Garcia Garcia could not accomplish his last wish to return to Mexico and see his children. He passed away before Christmas in Sacramento, Calif.
In a 2012 New England Journal of Medicine article, “Home: Palliation for Dying Undocumented Immigrants,” Ricardo Nuila, MD, of the Baylor College of Medicine in Houston, Texas, wrote that “for many undocumented immigrants, terminal illness is a revolving door.”
He went on, “They are admitted from the emergency department with severe pain or organ failure. We stave off death well enough for them to be discharged, and very soon, they return--until the day they don’t.”
But there are some exceptions.
Sometimes Nuila and his staff can place undocumented patients in hospice services, because nonprofit hospices must provide charitable care, “but for most we do not,” he said.
Mental stress and suicidal thoughts
Nuila pointed out, “Many times the undocumented patients suffer as much mentally from this process as they do physically.”
One of his patients, whom he identified only as “Cifuentes,” a Honduran with stage IV stomach cancer, survived despite three different rounds of chemotherapy and gastrectomy.
"After I admitted him a third time in two weeks for renal failure, he asked if I might administer a much larger dose of morphine to kill him," the physician recalled. Physician-assisted suicide is not legal in Texas, and even in Oregon and Washington State where the option may be available, the rules allow it only in limited cases.
Nuila spoke with Cifuentes about what he could do, such as seek comfort care in hospice and declare in an advance health care directive that medical staff not revive him in emergency situations, if he could not communicate.
But the doctor said this left him “feeling disingenuous, since I knew what would happen: Our social worker would talk with him, take down a working phone number and promise to call if a hospice spot opened up. He asked to be discharged and asked for something different.”
Cifuentes asked to go home. “So instead of calling the social worker, our medical team called the Guatemalan consulate,” Nuila said. “We described his diagnosis and prognosis and told them what we considered the best, and perhaps the only medical plan: to send Cifuentes home.”
According to Nuila, sending dying patients to their home countries is nothing new: “In fact, many palliative care teams in immigrant-heavy areas have started to provide this service as something tantamount to granting a dying wish.”
Sometimes patients themselves pay for their final journey home, but often funding comes through the patient’s home government, such as Mexico’s Protection Department.
“If arranged properly, sending a dying patient home can be a win-win solution: It provides a dying patient a means for palliation without using county or emergency Medicaid funding,” Nuila noted.
Carlos Sada, the consul general of Mexico in Los Angeles, said that in the past two years, they have sent five terminally ill immigrants to Mexico at a total cost of $24,000.
"We provide them the plane ticket, and there are times when we make contact with the hospitals to meet them on arrival through Seguro Popular,” which is a government medical plan for the poor elders in Mexico, Sada said.
He continued, “Sometimes even consulate staff travels with the ill immigrants, and there have been successful cases when a medical team is waiting for them at the airport to take them to the hospital," said the Mexican consul.
"What we do is to fulfill the last wish of a Mexican immigrant with an incurable disease, whose desire is to spend the last days with family at home," the Sada said. Those sent home to Mexico have ranged from middle age to very elderly with advanced cancer or kidney disease.
Finding palliative care difficult
Where can undocumented immigrants find palliative care?
V.J. Periyakoil, MD, director of Palliative Care Education and Training at Stanford University School of Medicine, said there are no specific agencies that provide information in other languages.
However, any health care organization providing hospice services using federal funds has to offer access to medical interpreter services. “This is how these patients get access to palliative care information,” Periyakoil said.
She added that for undocumented immigrants everything is exponentially harder. “They are not covered by Medicaid, and thus do not get access to hospice services at all.” She noted, “I have seen tragic cases where the patient is isolated from their social network, has limited English proficiency and is dying.”
Periyakoil also stressed that at present there is no free phone line in Spanish in California where undocumented patients or their caregivers call for information about palliative care.
Araceli Martínez Ortega wrote this article for La Opinion through a California Healthcare Foundation journalism fellowship, a project of New America Media in collaboration with the Stanford In-reach for Successful Aging through Education Program.