Excerpted From: Medha D. Makhlouf, Health Care Sanctuaries, 20 Yale Journal of Health Policy, Law & Ethics 1 (Spring, 2021) (358 Footnotes) (Full Document)
Low-income immigrants with a serious medical condition are in an impossible situation. How much do you risk for medical care? Deportation would devastate your family but so would your illness and death.
A grandfather who visits a hospital emergency room for severe abdominal pain refuses to follow up with a gastroenterologist because he is worried that enrolling in Medicaid will affect his pending immigration application. A mother decides to skip prenatal care for her third pregnancy because she has seen Immigration and Customs Enforcement (ICE) officers in the parking lot of the health clinic. A fast-food worker with COVID-19 symptoms seeks relief from a curandero (traditional healer) instead of accessing publicly funded testing and treatment because he believes that the information will be tracked and reported to immigration authorities. These are examples of how fears of immigration surveillance serve as barriers to health care.
This Article focuses on concerns that arise from two modes of immigration surveillance in health care: (1) interrogation, arrest, search, or detention by immigration enforcement officers at health care sites; and (2) use of personal information disclosed for the purpose of obtaining health care to deny immigration benefits or for immigration enforcement purposes. Reluctance to seek health care or coverage because of fear of immigration consequences is a barrier to health care access for noncitizens. Fear discourages noncitizens from seeking care even when they are legally entitled to do so. It influences the care-seeking behaviors both of noncitizens with an array of legal statuses and of their U.S.-citizen family members.
This Article applies the sociological concept of “system avoidance” to avoidance of engagement with the health care system because of immigration-related concerns. System avoidance occurs when “individuals avoid  institutions that keep formal records ... and therefore heighten the risk of surveillance and apprehension by authorities.” The migration research literature refers to avoidance of surveilling institutions by noncitizens with vulnerable legal statuses as “chilling effects.” As immigration enforcement in homes, workplaces, schools, government offices, and the streets has become more commonplace, noncitizens have grown increasingly fearful that routine interactions at everyday places can lead to arrest and deportation. Health care sites are one such place. Health care system avoidance based on fear of immigration surveillance is an example of how the expansion of immigration enforcement in the interior of the United States has discouraged noncitizens from engaging in socially beneficial behavior.
The concept of health care system avoidance has spawned a rich literature about “legally vulnerable populations” that applies in broad contexts, which raises the question: Why examine health care system avoidance as it applies to noncitizens? While it is true that awareness of health care system avoidance has motivated efforts to expand access to health care and address health care disparities, these efforts are inadequate if they do not address the unique and disproportionate risks of accessing health care as a noncitizen. Despite this, health care access for noncitizens has largely been left to the vagaries of immigration law and policy. Furthermore, an examination of system avoidance as a confluence of health and immigration policies can help to explain more generally how legally imposed categories stratify groups within the U.S. health care system.
This Article presents a rough framework for balancing health-related policy goals with immigration policy goals, each of which are vitally important and often contested. It bridges legal scholarship on health care access and immigration surveillance--two bodies of literature that have developed independently and that have consequential interactions. It contributes to the literature on health care access and marginalized communities by synthesizing insights from health law, immigration law, and sociology to examine law's role in generating health care system avoidance behaviors. It contributes to the interdisciplinary literature on immigration as a social determinant of health by providing a case study of how legal status stratification shapes the health of noncitizens and their family members.
This is also the first Article to comprehensively describe the laws and policies pertaining to the government's conduct of immigration surveillance activities at health care sites. Even though some of these laws and policies treat health care sites as sanctuaries from immigration enforcement, fear of engaging with the health care system is widespread in immigrant communities. The failure of law to persuade in this context reflects beliefs among noncitizens and their family members that the government will not constrain interior immigration enforcement even when there are serious health-related tradeoffs. Correcting this misperception and reforming the law to create health care sanctuaries is in the government's immediate and long-term interests. Most urgently, the government will benefit from renewed trust during its quest to make the coronavirus into a manageable threat through mass inoculation. Transparency and inclusion in the distribution of COVID-19 vaccines, including to noncitizens, will protect the lives and livelihoods of all people living in the United States.
This Article argues that immigration surveillance in health care is a poor choice of resource allocation for immigration enforcement because it has severe collateral consequences for the U.S. health care system and compromises the legitimacy of the state vis-à-vis its noncitizen residents. Immigration surveillance resources should be concentrated on efforts that produce the greatest benefits and the fewest drawbacks. Although immigration surveillance in health care may be justified, even sensible in certain narrow circumstances, it is a poor tradeoff in the general case.
This Article proceeds in five parts. Part I introduces the phenomenon of immigration-related health care system avoidance. It presents data showing that noncitizens and their family members avoid health clinics, hospitals, and enrollment in publicly funded health coverage because of immigration-related fears. It draws on sociological theories to demonstrate that these beliefs are grounded in legitimate concerns about the expanding web of immigration surveillance.
Part II describes the legal framework of immigration surveillance in health care. Although existing laws and policies partially protect noncitizens from immigration surveillance in health care, the gradual expansion and normalization of interior immigration enforcement motivates system avoidance behaviors among noncitizens and their family members. Immigration surveillance involves the mass collection and analysis of personal data and the delegation of immigration control activities to public and private actors who are not affiliated with immigration enforcement agencies. It is related to a decades-long shift in the locus of immigration enforcement activities from the border to the interior.
Delegating immigration surveillance to public and private actors who are not affiliated with immigration enforcement agencies is an increasingly important part of immigration enforcement. It casts a wider net for identifying noncitizens of interest to immigration enforcement agencies; at the same time, it discourages noncitizens from engaging in socially valuable behaviors, such as seeking COVID-19 testing from a publicly funded health clinic or enrolling in Medicaid in order to afford the costs of treatment. Immigration enforcement officers routinely surveil noncitizens while they go about the ordinary tasks of life in their homes, places of employment, schools, courthouses, and hospitals. As a result, noncitizens perceive the prospect of interrogation or arrest by immigration enforcement officers at or near health care sites as a realistic risk. Likewise, they avoid participating in publicly funded health programs if there is a possibility that the information they disclose will be shared with immigration agencies.
Laws and policies limiting immigration enforcement activity at health care provider sites and generally protecting the confidentiality of personal information submitted to public benefit agencies have not allayed noncitizens' fears of accessing health care or publicly funded health coverage. This is, in part, due to gaps, uncertainties, and exceptions in the law. Noncitizens' skepticism about the law's protections may also be considered a rational response to the overt and covert expansion of immigration surveillance over time. For example, a regulation promulgated in 2019, and since rescinded, increased the risk that certain noncitizens who enrolled in Medicaid would be denied lawful permanent resident (LPR) status. As part of the immigration application process, noncitizens were required to provide details about their use of Medicaid and other public benefits. They were also compelled to authorize U.S. Citizenship and Immigration Services to verify this information with other government agencies, including the Department of Health and Human Services. This policy and others have exacerbated noncitizens' fears of accessing publicly funded health care because of the perception that any use of public benefits will increase the risk that a future immigration application will be denied.
Part III draws out the ways in which permitting surveillance in health care (or affirming conceptions that it occurs) creates tradeoffs between immigration and health policy. Laws that permit immigration surveillance in health care, and therefore generate fears of accessing health care among noncitizens and their family members, have serious collateral consequences for the health care system that should be considered in weighing their utility. First, when people delay or avoid seeking vaccines or treatment for infectious disease like COVID-19, they increase their risk of transmitting the infection to others, thereby contributing to disease burden. Second, it is harder for providers to generate good outcomes and practice cost-effective care when patients delay or avoid routine care--the risk of becoming seriously ill or dying from all kinds of medical conditions increases. Third, permitting immigration surveillance in health care creates ethical dilemmas for health care providers. When health care providers become or are perceived as being complicit with immigration enforcement, it may contradict their professional duties to patients. Providers cannot act with single-minded devotion to the well-being of patients when patients' engagement with the health care system may have negative immigration consequences. As a result, providers are sometimes forced to alter clinical risk calculations and clinical recommendations for reasons relating to immigration enforcement. Fourth, policies that increase the risks of people dying or suffering from treatable and preventable conditions may violate health equity norms, including commitments to reduce racial health disparities.
The state also compromises its legitimacy in several ways by permitting immigration surveillance in health care. This is the subject of Part IV. First, the laws regulating immigration surveillance in health care impose nearly insurmountable barriers for noncitizens to understand how and when they may access health care without triggering immigration-related consequences. This is a severe and burdensome constraint on noncitizens. Second, they encourage or require noncitizens to relinquish their privacy rights in their public benefits records. Third, they undermine noncitizens' property rights in public benefits by threatening a deprivation of liberty based on exercise of those rights.
Part V explains how creating durable legal protections against immigration surveillance in health care--“health care sanctuaries”--and making them well known can allay fears of accessing health care in immigrant communities. Such legal changes will recover some of the lost equilibrium between immigration enforcement and other goals and values of public policy. If legal health care sanctuaries are a political impossibility, health care institutions can still take steps to limit information sharing with immigration agencies, provide physical refuge from immigration enforcement, link noncitizens with legal services, and promote norms of justice and empathy in immigration policy. Institution-level policy changes designed to protect noncitizen access to health care may catalyze legal reform.
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Noncitizens living in the United States are increasingly fearful of being surveilled by immigration authorities while going about the typical activities of daily life, including going to the doctor or applying for health insurance. Although immigration surveillance in health care may be justified in certain circumstances, it is a poor tradeoff in the general case. This is because the collateral consequences for public health and the health care system are severe. Policymakers should take these health-related consequences into account when weighing the utility of indiscriminate immigration enforcement, especially during a pandemic. Health care sanctuaries are a pragmatic, principled, and legitimacy-enhancing solution to the problems associated with immigration-related health care system avoidance. This approach suggests possibilities for balancing health-related policy goals with immigration policy goals in contexts beyond immigration surveillance in health care.
Assistant Professor and Director, Medical-Legal Partnership Clinic, Penn State Dickinson Law; Assistant Professor, Department of Public Health Sciences, Penn State College of Medicine.