End-of-Life Care for Unauthorized Immigrants in the U.S.

Abstract

The Universal Declaration of Human Rights recognizes the inherent dignity, the equal and unalienable rights to be universally protected for all humans irrespective of race, color, gender, language, religion, political or other opinion, national or social origin, property, birth or other status. Though this includes the right to dignity-conserving care for terminally ill unauthorized immigrants, access to quality end-of-life care eludes them. Most of the estimated 11.3 million unauthorized immigrants either entered the country without the knowledge of the U.S. Immigration and Customs Enforcement, or were admitted on a temporary visa and stayed past its expiration date. Unsafe living conditions, occupational hazards, lack of access to routine healthcare, scarceness of a social and financial support system, fear of deportation, discrimination and incarceration limit healthcare access of unauthorized immigrants. Lack of access to preventative primary care encounters often results in this population’s dependence on acute emergency services for treatment. Lack of opportunity for advance care planning discussions and lack of eligibility to hospice services commonly contributes to poor end of life care. As unauthorized immigrants approach the last days of life, they may often die alone, away from their loved ones, with little-to-no psychosocial support in their final moments. This article provides an overview on end-of-life care for unauthorized immigrants and makes recommendations for potential strategies to providing humane care and support to this vulnerable population.

Introduction

The notion of patients’ rights is based on the Universal Declaration of Human Rights,¹ which recognizes inherent human dignity and the equal and unalienable rights of all members of the human family to be universally protected irrespective of race, color, gender, language, religion, political or other opinion, national or social origin, property, birth, or other status.¹ These fundamental human rights become particularly important to seriously ill patients as they are vulnerable due to the limitations imposed by their illness(es). Efforts to improve access to high-quality end-of-life care for all dying persons elude the most vulnerable populations,^2–4 including the 11 million unauthorized immigrants⁵ presently living within the U.S. In this article, we provide a brief overview of immigrants and describe the current state of unauthorized immigrants in the U.S. based on the limited data available and discuss the authors’ clinical experiences in caring for them at the end of life.

Preferred Terms of Usage

The terms “undocumented immigrants” and “unauthorized immigrants” are often used interchangeably to refer to the foreign nationals who reside in a country illegally. Terms such as “illegal alien” and “illegal immigrant” are thought to be pejorative and best avoided. The preferred phrase is “unauthorized immigrants,” the legal term used by the U.S. government to describe this population and will be used in this article.

Overview of Immigration to the U.S.

Throughout the history of this country, economic disparities and political pressures have been the primary reasons for immigration. In caring for immigrants with serious illnesses, it is important for clinicians to have a better understanding of their visa status as this greatly impacts their health and access to health care.

Immigrant Patients Generally Fall Into Three Broad Categories:

1. Lawful immigrant patients: Generally, a citizen of a foreign country who wishes to enter the U.S. must first obtain a visa: a nonimmigrant visa for temporary stay or an immigrant visa for permanent residence. Visitor visas are for nonimmigrants, who want to enter the U.S. temporarily for business (Visa Category B-1); tourism, pleasure, or visiting (Visa Category B-2); or a combination of both purposes (B-1/B-2). Others, including those who immigrated to be reunited with their family members currently living in the U.S., are granted lawful permanent residence. As these immigrants have legal status, they can purchase health insurance. Those with a work visa may have health insurance through their employers. Patients’ ability to access quality end-of-life care will depend on the nature of their health insurance. New immigrant older adults are not eligible for Medicare. Immigrants who have a permanent resident visa, have lived in the U.S. for five years, and are ≥65 years can purchase Medicare. Those who are aged ≥65 years and have worked for 40 quarters (10 years) in the U.S. are eligible for Medicare Part A through the 1996 Welfare Reform Act. Lawful immigrants can become unauthorized immigrants if they allow their visas to expire.

2. Patients who are refugees: Persons seeking asylum in the U.S. have to apply to the U.S. Refugee Admissions Program for a visa. A person applying for the U.S. Refugee Admissions Program must be located outside the U.S., be of special humanitarian concern to the U.S., and demonstrate that they were persecuted or fear persecution due to race, religion, nationality, political opinion, or membership in a particular social group. Unaccompanied alien children apprehended by the Department of Homeland Security immigration officials are transferred to the care and custody of the Office of Refugee Re-settlement. The Office of Refugee Resettlement places an unaccompanied child in the least restrictive setting that is in the best interests of the child, taking into consideration danger to self, danger to the community, and risk of flight. Refugees’ health screening programs, clinical resources, and access to health care vary among states. Only some refugees are eligible for Medicaid or the Children’s Health Insurance Program, which is available for several years. Many refugees get limited short-term health insurance called Refugee Medical Assistance.

3. Unauthorized immigrant patients: The U.S. Department of Homeland Security⁶ defines the U.S. unauthorized resident immigrant population as “all foreign-born noncitizens living in the U.S. who are not legal residents.” More specifically, this consists of “the remainder or residual after the legally resident foreign-born population—legal permanent residents, naturalized citizens, asy-lees, refugees, and nonimmigrants—is subtracted from the total foreign-born population.⁶” Unauthorized immigrants are those who entered the country without the knowledge of the U.S. Immigration and Customs Enforcement or were initially admitted on a temporary visa (e.g., visitor visa) and stayed past its expiration date. Although these unauthorized immigrants violate the U.S. immigration laws, the aspects of the U.S. Constitution that safeguard basic human rights apply to everyone residing on American soil, including this population. Unauthorized immigrants are not currently eligible for insurance coverage under the Affordable Care Act. As this population grows older, they will likely live with and die of one or more chronic illnesses.

Countries of Origin and Scope of Unauthorized Immigration

In 2012, unauthorized immigrants accounted for approximately 3.4% of the total U.S. population,⁵ constituting 26% of the nation’s 42.5 million foreign-born residents.^6,7 Most unauthorized immigrants have lived in the U.S. for years. In 2014, unauthorized immigrant adults had lived in the U.S. for a median of 13.6 years. About 78% of unauthorized immigrants emigrated from neighboring North American countries,⁶ such as Canada, Mexico, the Caribbean, and Central America. Hispanics represent the largest^8,9 ethnic minority group in the U.S. An estimated 5.6 million Mexican unauthorized immigrants currently live in the U.S.

In 2014, unauthorized immigrants comprised 5.1% (8 million) of the total U.S. civilian workforce. In 2007, the median unauthorized immigrants household income was $36,000, well less than the $50,000 median household income for native-born U.S. residents.⁹ Previous studies have reported that 20% of adult unauthorized immigrants live below the U.S. federal poverty line, compared to only 13% of documented immigrants and 10% of native-born citizens.⁹ In contrast to other immigrants, unauthorized immigrants do not attain markedly higher incomes the longer they live in the U.S.⁹ When stricken with illness that results in a deteriorating functional decline, this financial hardship may be further intensified in unauthorized immigrant patients who are no longer able to work to generate revenue or afford the “fee for service” for health expenses. The social support networks for unauthorized immigrants are often tenuous as many of their close family members and relatives may still reside in their country of origin.

Causes of Morbidity and Mortality in U.S. Unauthorized Immigrants

Data on unauthorized immigrants are not readily available, making them a largely invisible population. Owing to their unsafe living conditions, occupational hazards, lack of access to routine health care, and scarceness of a social and financial support system, we hypothesize that unauthorized immigrants in this country are likely to die younger compared to the rest of the U.S. population. Based on our collective clinical experience, we identify three common patterns of dying among unauthorized immigrant populations (Table 1). Many unauthorized immigrants die during the grueling journey from their home country to the U.S. On arriving here, unauthorized immigrants tend to work menial, minimum-wages jobs in extreme conditions where death due to exposure and other accidental causes is common. Unauthorized immigrants are also at greater risk of dying due to the consequences of undiagnosed and untreated chronic diseases such as diabetes, cancer, and heart failure. According to the American Cancer Society, since 2009, cancer has remained the leading cause of death for U.S. Hispanics—the nation’s largest group of unauthorized immigrants—although it is second to heart disease, which is the overall leading cause of death in our country.^8,10

Table 1.

Common Dying Patterns in U.S. Unauthorized Immigrants

Issue	Details	Examples
Death in transit	Unauthorized immigrants migrate to the U.S. under harsh conditions. Half emigrate from Mexico across land through the environments of the Southwest of the U.S. There are many deaths related to environmental exposures, in addition to trauma and homicides. Deaths under these circumstances are rarely, if ever, reported and remain a mystery to these immigrants’ families and loved ones.	Internet reference: accessed 08/24/2017 http://www.cnn.com/2017/07/23/us/san-antoniobodies-found-intrailer/index.html
Death from preventable causes	Unauthorized immigrants often do not have health insurance. Many die due to untreated acute illnesses (meningitis, asthma, heart attack, stroke) or treatable complications of chronic diseases (diabetes, hypertension, and hepatitis). Owing to lack of knowledge, communication barriers, lack of access to routine health care services, and fear and mistrust of the health care system, these unauthorized immigrants usually seek care only during illness crises.	Illegal Migrants: Numbers and Characteristics (PDF). Pew Hispanic Center. 14 May 2005. Retrieved 8/24/2017
Death from serious illnesses	Unauthorized immigrants in the U.S. often present in a late-stage of their disease course, seeking medical care solely through acute services that cannot turn away clinically unstable patients, such as emergency departments across the nation. Unauthorized immigrants typically die within the hospital during an illness crisis. Some die at home, and a few are fortunate enough to receive charity home hospice care.	Isacson, Adam; Meyer, Maureen (2012). Beyond the Borde Buildup: Security and Migrants along the U.S.-Mexico Border (PDF). Washington, DC: Washington Office on Latin America. p. 57. ISBN 978–0–9834517–8–5

Unauthorized immigrants may be unaware of the need for accessing health care services or unable to overcome the barriers to gaining access to such care. Although some unauthorized immigrants do receive emergency health care services from primarily state-funded safety-net hospitals, these patients are usually lost to follow-up after hospital discharge due to the lack of ongoing access to routine primary care and preventive services. This is commonly due to the financial barriers imposed by lack of health care insurance coverage. In 2017, the Henry J. Kaiser Foundation reported that unauthorized immigrants make up 14% of our nation’s uninsured population.²⁸

Barriers to Care for Unauthorized Immigrants

Unauthorized immigrants are often quite hesitant to access the health care system. This is due to financial hardship, limited social support, and overall mistrust of the U.S. health care system.¹¹ Trepidation also plays a prominent role, including the fear of deportation, discrimination, and incarceration.¹¹ Approximately 47% of unauthorized immigrants between 25 and 64 years of age have less than a high school level of education, compared to the significantly lower 8% of the native-born U.S. population.⁹ A majority of U.S. unauthorized Latino immigrants only speak Spanish, and less than a quarter acknowledged being fluent in English.¹² Patients with limited English proficiency often struggle to learn about potential resources and other support services, which results in a constrained ability to make well-informed personal health care decisions.¹¹ Many unauthorized immigrant patients seek care only at the time of a disease crisis, when these diseases may be in an advanced and potentially terminal stage that leads to poorer health care outcomes.

Challenges Surrounding End-of-Life Care for Unauthorized Immigrants

Owing to barriers described previously, unauthorized immigrant patients are never afforded the opportunity to develop trusting and enduring clinician relationships.^{4,11,13,26,31–36,39,40} As a result, they are less likely to complete advance care planning, including designating appropriate health care proxies.^{4,11,13,26,30–36,38–41} A recent study by Cervantes et al.²⁵ demonstrated the additional physical and psychological suffering–associated intermittent emergent care for catastrophic illnesses, such as end-stage renal disease. The absence of advanced care planning discussions and inaccessibility to end-of-life hospice services commonly contributes to more severe symptom burden when seriously ill unauthorized immigrant patients finally present for treatment during a health crisis. At this point, patients may lack decisional capacity. They may not have access to a health care proxy (as their family members may not be in the U.S.) or family caregivers. Struggling with the burdens imposed by the serious illness and unable to communicate freely due to language and literacy barriers, these patients are at greater risk to being subjected to nonbeneficial treatments at the end of life including intensive care unit admissions, prolonged hospitalizations, and in-hospital death.^13–15 Similarly, decisions related to resuscitation or to withhold or withdraw life support are frequently made by the hospital’s health care team instead of by the patient or their family.^11,37,38 Combined, all of these factors lead to poorer overall health care outcomes for seriously ill unauthorized immigrants, including lower quality end-of-life care.¹¹

Children of U.S. Unauthorized Immigrants

An estimated 23% children in the U.S. have at least one immigrant parent.²⁹ About 4.7 million U.S.-born children aged less than 18 years are living with unauthorized immigrant parents.³⁰ Nearly half of unauthorized immigrant households (47%) in the U.S. consist of family with children aged less than 18 years, a much greater percentage compared to households of native-born residents (21%) or documented immigrants (35%).⁹ Reports from 2008 showed that 73% (4 million) of the children of unauthorized immigrant parents were born in this country and are U.S. citizens.⁹ An additional 1.5 million (27%) unauthorized immigrant children reside in this country.⁹ In situations when the unauthorized immigrant parent is terminally ill, these children have limited support including grief counseling. If the parent dies, these children may not have any benefits available to them (e.g., unauthorized parent will not have life insurance, pension, 401K, burial, and cremation benefits). Even in situations when they have a second living parent or relatives, they may be forced into the foster care system if the adults caring for them are unauthorized.

The Hospice Care for Unauthorized Immigrants

Unauthorized immigrants are the largest demographic group explicitly excluded from Affordable Care Act provisions, including end-of-life hospice benefits.^21–23 Recent U.S. population studies have found trends toward increasing lengths of residency for unauthorized immigrants, which is expected to result in the overall increased aging of this population.²⁴ As many more unauthorized immigrants are becoming long-term U.S. inhabitants, some researchers have predicted that the demand for hospice services in this population is likely to increase over time.²⁰

A recent report by Gray et al.²⁰ found that 32% of U.S. hospice agencies limited or did not enroll unauthorized immigrants as patients. Some hospice agencies currently provide charity care for uninsured unauthorized immigrants without the financial ability to pay; however, most restrict the number of pro bono patients they will serve. The limited number of studies to date suggests that unauthorized immigrant enrollment is more feasible for larger, nonprofit, independent hospice agencies.^19,20

Home hospice agencies typically require that patients have an appropriate place to live and a full-time primary caregiver. However, owing to their overall poor socioeconomic status, many unauthorized immigrants have neither. This lack of health care coverage combined with the suboptimal home situation makes home hospice a luxury that most unauthorized immigrants can rarely afford or realistically implement.

Cultural Insensitivity in the Final Days of Life in Unauthorized Immigrant Population

Unauthorized immigrants spend their final days in a foreign country, often separated from their loved ones. Based on our clinical experience (Table 2), when faced with a terminal illness, many unauthorized immigrant patients express a desire to see their families one last time. More often than not these patients are too ill or cannot afford to travel back to their home countries. They are also unable to sponsor visitor visas for their loved ones. Thus, they end up dying in an institutional setting or alone at their place of residence, away from their loved ones.

Table 2.

Real Cases of Unauthorized Immigrants With Serious Illnesses

Case 1	E. I. is a 32-year-old male unauthorized immigrant from Mexico who worked as a construction worker and lived with his wife and a young son. He was brought to the emergency room for severe breathlessness and was diagnosed with advanced dilated cardiomyopathy. He received care in the emergency room and was discharged home without any follow-up. Despite his advanced disease, he continued to work as a laborer to support his family. Over the next few months, his condition worsened and he was hospitalized repeatedly for worsening heart failure. With each hospitalization, his functional status declined further. He did not have access to primary care or any of his cardiac medications between hospitalizations. The local free clinic asked him to procure a picture ID, which he refused to do for fear of deportation. Owing to communication barriers and poor health literacy, E. I. did not understand the gravity of his situation. He finally died in the emergency room with end-stage heart failure and severe dyspnea after undergoing cardiac resuscitation.
Case 2	R. M. was a 43-year-old woman unauthorized immigrant from Mexico who was diagnosed with advanced abdominal liposarcoma. She was brought to the emergency room for nausea, vomiting, and severe pain. She restricted Medicaid-covered emergency and pregnancy-related services only, and she could not access Oncology services. R. M. continued to do unskilled work to support her two young children. During one of her many hospitalizations, a PRUCOL application was filed in an attempt to gain her full scope Medicaid and broaden the services available to her. However, she was discharged before successful completion of the application. Owing to language and communication barriers and lack of access to services, her symptoms were poorly managed. She continued to frequent the emergency department of the local safety-net hospital when her symptoms escalated and was hospitalized repeatedly. She was eventually discharged home on charity hospice care and passed away soon after.
Case 3	J. C., a 50-year-old male unauthorized immigrant from Mexico, came to the county hospital for few week history of progressively worsening headaches, bilateral blurry vision, and one episode of grand mal seizures. He was a migrant farmworker who had been living in the U.S. for 25 years with his wife and two children. He had never accessed the health care system for routine checkups and surveillance or acute care on even one occasion in fear of being discovered and deported. A workup in the emergency room including a head CT scan, brain MRI, and a diagnostic lumbar puncture (LP) confirmed cryptococcal meningitis, severe secondary hydrocephalus with increased intracranial pressure, and resultant bilateral optic nerve compression. His hospital course included maximal medical management and serial therapeutic LPs, followed by insertion of a ventriculoperitoneal shunt. He was also diagnosed with acute hepatic decompensation and required serial paracentesis. He was discharged home after a two-month hospital stay, only to return three days after discharge with acute renal dysfunction, anuria-necessitating initiation of dialyses. The patient’s dying wish was to return to Mexico to live out his remaining days on his own national soil so he could partake in all the cultural rituals involved with burial in his native land. Sadly, over the next few days, septicemia developed in him and he was diagnosed with infectious endocarditis and also a bowel perforation. Over multiple family meetings, the family and care team decided to initiate terminal care in the hospital and he passed away few days later.
Case 4	G. L. was a 54-year-old Spanish-speaking male unauthorized immigrant from Mexico with metastatic head and neck cancer. He had limited English proficiency and below-basic health literacy. His chemotherapy was stopped as his tumor continued to progress. G. L. struggled to reconcile with the fact that he was not a candidate for further disease-directed treatments. Spinal cord compression with secondary bilateral limb paralysis developed in him. As his disease progressed, he struggled with refractory neuropathic cancer pain for which he was hospitalized multiple times and underwent numerous treatment measures and procedures. After one prolonged hospitalization, the hospital was unable to discharge him home to hospice as he was unauthorized, homeless, and without any local psychosocial support. The patient’s dying wish was to see his family. The team notified the Mexican consulate, and they arranged to have him return home to be reunited with his family at the end of his life.

PRUCOL = Permanently Residing under Color of Law.

When an unauthorized immigrant dies in a hospital setting, in the absence of next of kin, the local county coroner’s office is informed. Depending on the local county regulations, the body is typically sent to the nearest coroner’s office and a limited next-of-kin search is performed. These efforts are mostly unsuccessful, due to the family’s fear of being identified as undocumented and deported. If no next of kin is identified, the patient’s physical remains are cremated by the local health department and subsequently distributed to un-disclosed intracounty locations.^42–44 In this impersonal process, any opportunity to practice culturally sensitive ceremonies and rituals that are important to the patient is lost. For example, cremation is taboo in certain religions, while according to other religions, very specific rituals are required to purify the body of the deceased and prepare for ritual burial.

Eventually, a death certificate is issued by the state under the name that the unauthorized immigrant patient gave upon hospital admission. As some unauthorized immigrant patients are afraid to disclose their real name for fear of repercussion, often these death certificates are inaccurate. These erroneous death certificates, combined with the lack of a publicly available searchable U.S. decedents pictorial database, prevent the relatives of these unauthorized immigrant patients from ever knowing about their demise.

The Rapidly Evolving Climate of Health Care in the U.S. and the Patient Protection and Affordable Care Act

The present-day political climate has returned national health care and immigration reform to the fore-front of the American conversation. Introduced in 2010, the Patient Protection and Affordable Care Act (ACA) was implemented to improve the health and financial situations of those living within the U.S. However, the ACA explicitly excludes unauthorized immigrants from obtaining health insurance coverage and taking part in the expanded Medicaid coverage insurance exchange market. A recent report from Fernandez et al.²⁶ commented that “policies that discourage unauthorized immigrants from obtaining health care, particularly more cost-effective outpatient care, can both increase costs and have serious public health effects.” Before the implementation of the ACA, an estimated 31% of unauthorized immigrants obtained some health care coverage through employee-sponsored insurance.¹⁷ Currently, unauthorized immigrants are not eligible to buy Marketplace health coverage or for premium tax credits and other savings on Marketplace plans. But they may apply for coverage on behalf of documented individuals. Deferred Action for Childhood Arrivals is not an eligible immigration status for applying for health insurance. Applicants for asylum are eligible for Marketplace coverage only if they’ve been granted employment authorization or are aged less than 14 years and have had an application pending for at least 180 days.

Some unauthorized immigrant patients have received basic services through Medicaid if they are “Permanently Residing under Color of Law” eligible.²⁷ Enacted in 1986, the Emergency Medical Treatment and Active Labor Act (EMTALA) was designed to provide patients in the U.S. with access to emergency medical care.¹⁸ EMTALA was also created to prevent our country’s for-profit hospitals from refusing to care for medically unstable uninsured patients, regardless of ability to pay for such services.¹⁸ Per EMTALA, “any patient arriving at an emergency department in a hospital that participates in the Medicare program must be given an initial screening and, if found to be in need of emergency treatment or in active labor, must be treated until stable.” However, once a hospital deems a patient to be medically “stable,” EMTALA does not require that these hospitals to provide any additional treatment. In addition, the definition of what constitutes “emergency treatment” varies by state. For example, in New York state, Medicaid for Emergency Care may be used to provide chemotherapy and radiation therapy to unauthorized immigrant patients with cancer, and in California and North Carolina, it may be used to provide outpatient dialysis.

Seriously ill unauthorized immigrant patients admitted to acute care hospitals are in need of skilled nursing services on discharge; lack of such services prevents results in protracted hospitalizations in publicly funded safety-net hospitals, adding to the national health care deficit. Fortunately, there are some potential solutions that can be implemented. For example, some safety-net hospitals have created contracts with specific local skilled nursing facilities to provide custodial care for those unauthorized immigrant patients too sick to be sent home without adequate around-the-clock support. In some cases, patients can benefit from financial support to travel to their home country while they are well enough to tolerate the trip. In some cases, this final voyage is sponsored by their home country’s government; an example is the program sponsored by Mexico’s Protección Civil department.¹⁶

Looking at the Rest of the Western World for Guidance

Several models currently in use, particularly within Europe, may provide a guide on how to provide improved access to humane care to seriously ill unauthorized immigrants. Policies within the European Union to cover unauthorized immigrants vary along three primary themes.¹⁷ First, particular segments of unauthorized populations (e.g., children, pregnant women) are given access to health care. Second, specific services (such as emergency, prenatal care, and preventative services) may be provided to unauthorized immigrants. Third, health care systems may vary on the funding for care for unauthorized immigrants. These funding policies include allowing uninsured patients to purchase into a national system, allowing coverage of uninsured patients without buy-in, and allocating additional sources of money dedicated to the care of unauthorized immigrants. These are strategies that should be examined with their relevance and applicability to the U.S. to help resolve the issue of caring for the unauthorized immigrants that have integrated into and currently reside in our country. Possible solutions include a “catastrophic enrollment clause” to Medicaid to cover early palliative care for patients with chronic and serious illnesses and end-of-life care services for terminally ill unauthorized immigrants so that they may live the last chapter of life in dignity and peace. International reunification agreements specifically designed to transport dying patients back to their country of origin to be reunited with and die surrounded by their loved ones will be a welcome option for many dying unauthorized immigrants and a testament to our collective humanity.