Background
Undocumented immigrants in the United States are largely ineligible for publicly funded health care, with a few notable exceptions. In all states, the federal Emergency Medical Treatment and Active Labor Act (EMTALA) requires that all health care facilities that receive Medicare funding assess and treat all patients who present to an emergency room in an emergent state or in active labor without ascertaining immigration status or ability to pay.Reference Siskin1 Additionally, certain non-profit safety net health centers in every state are able to offer federally subsidized primary and preventive care on a sliding fee scale to uninsured patients, including the undocumented.Reference Gusmano2
In addition to these nation-wide policies, some states also offer publicly funded prenatal care for undocumented immigrants using a variety of policy mechanisms.3 The first of these is a federal Children's Health Insurance Program (CHIP) policy known as the Unborn Child option, which provides undocumented pregnant patients with insurance coverage for prenatal care and other services relevant to pregnancy in the name of an unborn beneficiary. The Unborn Child option restricts the services covered to just those services that directly affect the fetus, such as ambulatory prenatal care and care for health conditions that could affect the fetus if left untreated, such as gestational diabetes. As of January 2018, 16 states use this policy option to provide pregnancy-related care to undocumented pregnant residents.4 The second policy mechanism that states can use is a state-funded Medicaid lookalike program that can provide all Medicaid services to financially eligible undocumented pregnant immigrants during pregnancy and for two months post-partum. This policy does not have restrictions on the services for which pregnant undocumented immigrants are eligible, so it can be used to cover the same range of services that Medicaid would cover for eligible citizens. This option is employed by two states as of January 2018: New York and New Jersey. New York provides a Medicaid lookalike as an entitlement program to undocumented pregnant immigrants within eligibility thresholds. New Jersey has a similar program that is structured as a block grant, so its services are subject to the availability of funding in the state budget, and although there are no federal restrictions on services, New Jersey opts only to provide pregnancy-related services. The remaining 32 states have not adopted either of these policy approaches.5 Additionally, 30 states offer presumptive eligibility (PE) for pregnant women, which allows qualified entities to grant temporary coverage while a final eligibility determination for Medicaid is pending.6 Some states do not require proof of qualified immigration status during the PE period, so it is possible that undocumented patients can receive up to two months of full or pregnancy-related coverage via this mechanism,Reference Fabi7 but this temporary coverage mechanism is beyond the scope of this paper.
The range of benefit restrictions across the various prenatal policies described above raises questions about the ability of health care workers to carry out their professional obligations towards their pregnant patients. Physicians and other health care workers may feel that such restrictions limit their ability to live up to their professional norms, which can cause significant distress. Much of the literature on the effects of health care policy on provider distress focuses on the ability of practitioners to conscientiously refuse to provide services to which they object, such as abortion. Some scholars, however, have attempted to reframe the role of conscience in the provision of health care from that of conscientious refusal to perform a procedure like abortion to the conscious-driven desire to provide health care in the face of policy restrictions.Reference Buchbinder, Lassiter, Mercier, Bryant and Lyerly8 Providers experiencing this conscience-based distress may engage in strategic “workarounds,” including rule-bending and “working the system” to provide resources to patients for whom they were not intended.Reference Berlinger9
A small body of research has explored the response of physicians and other health professionals to working within and around institutional or policy restrictions that limit their ability to provide appropriate care.Reference Novack10 Several studies have examined the willingness of health professionals to work around institutional or policy barriers by bending rules or engaging in other deceptive behaviors, finding that physicians sometimes approve of or engage in these behaviors when attempting to secure insurance coverage for patients.Reference Cain11 Whether these findings are applicable in situations when the policy constraint not only limits a professional's ability to provide care but does so in a way that systematically affects the care of a particularly vulnerable group of patients has not been assessed.
This study explored the practice-level implications of different prenatal policy environments through interviews with providers in four case states. This paper characterizes the professional practice norms that providers in each state described holding, the ethical tensions that they encountered in attempting to live up to those norms under each state's prenatal policy, and the “workarounds” they employed to do so.
This study explored the practice-level implications of different prenatal policy environments through interviews with providers in four case states. This paper characterizes the professional practice norms that providers in each state described holding, the ethical tensions that they encountered in attempting to live up to those norms under each state's prenatal policy, and the “workarounds” they employed to do so.
Methods
Sample
The sampling frame for the study was safety net health centers located in urban and rural counties across four states with different prenatal policies. The four states were purposively selected to represent the range of prenatal policies in the United States: Nebraska uses the Unborn Child option and restricts benefits to pregnancy-related care; California uses the Unborn Child option but provides all “medically necessary” services; New York uses state funds to enroll undocumented pregnant immigrants in a Medicaid looka-like; and Maryland has no public insurance option, so undocumented immigrants may seek subsidized care at safety net health centers. National Center for Health Statistics (NCHS) definitions for urban and rural were utilized to identify urban counties (NCHS urban-rural scheme code of 1 or 2) and rural counties (NCHS urban-rural scheme code 5 or 6) within each state. Among these counties, eligible safety net health centers were those located in the three urban and three rural counties with the highest percent of foreign-born residents in each state (as determined by the American Community Survey), which served as a proxy for undocumented immigrant populations.
Recruitment
To engage eight health centers, clinic directors and CEOs of 35 health centers were contacted. Leaders of the eight health centers that agreed to participate were asked to identify respondents with relevant experience providing or facilitating prenatal care for undocumented immigrants in each of the following roles: primary obstetrical provider (e.g. obstetrician, family doctor, or midwife), nurse or other medical provider (e.g. mental health clinician), patient support worker (e.g. social worker, prenatal educator, or outreach team member), and administrative staff (e.g. billing manager). Within the obstetrical provider and nurse/other medical provider categories, providers who work specifically with pregnant patients (family care doctors, obstetricians, nurse midwives, family nurse practitioners) were targeted for recruitment. Providers and staff were recruited via email to invite their participation in an in-depth semi-structured interview.
Data Collection
Interviews were conducted with clinical staff in each of the roles mentioned above in order to generate a comprehensive picture of the process through which undocumented pregnant immigrants access prenatal care in each clinic as well as the professional norms and ethical tensions that various providers experience. The interview guide covered three major domains:
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1. Background information about the clinic and the respondent's role within the clinic;
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2. Process through which undocumented patients access and pay for care at the clinic;
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3. Ethical tensions that the respondent encounters when serving undocumented pregnant patients in her professional capacity.
At the end of each interview respondents were asked to complete a brief demographic questionnaire. These interviews generally took 30-50 minutes, (mean: 34:40, median: 34:48). Interviews were conducted by phone, recorded, and transcribed. All interviews took place between August 2016 and October 2017.
Data Analysis
The transcripts of these interviews were imported into NVivo 11 for Mac to facilitate analysis.12 The broad goal of analysis was to identify themes that emerged within and across the case states. This was accomplished with an iterative emerging thematic coding scheme that employed a preliminary codebook that evolved in response to the data. Coding was compared across states to identify trends or patterns. A second coder was employed to validate the final codebook through a comparison of code application on five transcripts, which yielded high consistency of coding. Analysis of coding included an examination of patterns across and within states and provider categories, as well as the relative frequency of code application. This paper focuses on the emergent themes related to the professional norms at stake for health care workers who provide or facilitate prenatal care and the ethical/professional tensions they encounter in the course of caring for this population, as well as how the practices they develop to manage these tensions work. This project was determined to be exempt from IRB review by the Johns Hopkins Bloomberg School of Public Health IRB.
Results
A total of 34 informants were recruited for participation across the roles of primary obstetrical providers (n=8), nurses and other providers (n=7), social workers and patient support staff (n=12), and billing or clinic administrators (n=7) (see Table 1). Respondents were asked to describe the norms they associated with their professional position and to describe how these norms related to their role in providing care for undocumented pregnant patients, as well as the ethical tensions that arise when caring for this population. Many of the norms respondents described could be characterized as professional practice norms, which are those actions or practices that providers explicitly endorsed or implicitly performed when providing care to undocumented patients, including the “workaround” norms that emerged in response to ethical tensions caused by policy constraints. In the discussion of findings below, “common” refers to a theme that was identified in the responses of more than 25% of total respondents. What follows are two sections describing the most common themes across two domains: professional practice norms and ethical tensions and challenges.
Table 1 Respondent Demographics
Professional Practice Norms
The most common practice norm themes that emerged through this analysis, from most to least common, were: treating every patient the same, advocating for patients, and not asking about patient immigration status.
treating every patient the same
The professional practice norm of treating every patient the same was mentioned in two thirds of the interviews (n=24), and was one of the most common practice norm held by providers and staff across all four states. A physician from rural Maryland explained this norm, saying that she has a “commitment to give everybody as high quality healthcare as possible regardless of their insurance or immigration status” (MD-R-Prima-ryOB). Respondents also frequently emphasized that providing all patients with the same level of care was an important part of the ethos of their health center. A patient support worker from rural Nebraska observed that “we treat everybody the same and we believe that our mission is [that] everybody deserves equal health care and everybody deserves to be treated with dignity” (NE-R-PatientSupport). Several respondents indicated that their personal values aligned with the mission of their health center, and that providing care to the underserved was their reason for working at the center; one nurse from rural Nebraska said that “I do everything the same, no matter if they're documented, undocumented, they have insurance, they don't have insurance. You know? That's why I'm here” (NE-R-Nurse_MA, emphasis added). By linking the professional norm of treating all patients the same with her vocational calling to serve in a safety net health center, this respondent made it clear that this norm was very important to her personal values as well. This desire to treat all patients the same often undergirded the other professional practice norms that providers described, including advocating for patients and not asking about immigration status.
advocating for patients
The alignment between personal values and professional practice norms was also apparent in the other most common theme, advocating for patients, also mentioned by two thirds of respondents (n=24). A number of respondents described a general commitment to advocating on behalf of their patients. An administrator from rural Nebraska described her most important professional norm as “Reducing the barrier to care for patients. You know, we work here for a reason and that is to provide affordable health care for people who can't normally afford it” (NE-RAdmin, emphasis added). This echoes the sentiment of being in a nonprofit community health center “for a reason” and stresses the importance of advocacy to both personal and professional fulfillment. A mental health clinician from New York described advocating for patients as a key part of her job, saying that “Regardless of their status or their background … it is our job to really be with that person and help explore exactly what is going on and making sure that we are doing what we need to do to help really care and connect to multiple services and support patients with their basic needs” (NY-R-Nurse_MA). Despite her primary duty at the health center being the provision of counselling for mental health diagnoses, this respondent described advocacy activities as her “job” and spoke at length about the ways she advocates for patients whose basic needs are not being met.
While almost two thirds of respondents (n=20) explicitly mentioned or described advocating for patients as one of their professional norms, seven implied it through descriptions of their interactions with patients. The advocacy described took two forms: using personal connections and rule-bending. One nurse midwife in Maryland, where specialty care is not covered, described an instance of advocating for a pregnant patient who needed an echocardiogram, saying “I actually called my own cardiologist and talked to him personally. [This] is the sort of thing I would do for my daughter. And I said… ‘Your office said it was going to be $1,300, she really can't pay that, she could pay up to $600…’ And he was great about it. So she actually had it done. So I did intervene on her behalf in that way” (MD-U-PrimaryOB). This respondent went well beyond the requirements of her job as a midwife to help connect her patient to a specialty care service she would otherwise not have been able to receive. This type of advocacy, in which providers leveraged relationships to secure treatment for their patients, was reported by several respondents. A provider from Nebraska also described advocating for patients who were not eligible for certain services, saying “You know if they need something done, we're going to get it done and you know whether I'm calling up various agencies or what not, you know personally or whatever — we're going to get it done” (NE-U-PrimaryOB). Personal investment of time and resources to secure care for patients could be considered a work-around that enables the health care worker to live up to the practice norm that suggests that all patients, regardless of immigration status, should have access to the same level of care; this idea is explored further in the discussion section.
Another form of patient advocacy that providers described involved using whatever insurance was available during pregnancy to cover medical appointments, treatments, or procedures not explicitly covered by the policy. Most respondents were vague in their descriptions of how this might be accomplished, like one patient support worker from New York, who indicated that although the New York prenatal policy “is supposed to be for pregnancy related things … I think people try to sneak in as much as they can and it totally makes sense because otherwise they're uninsured” (NY-Urban-PatientSupport). Similarly, in California, where the Unborn Child option technically only covers care related to the pregnancy, a provider described how patients “can get everything done while they have it … So if they have underlying health issues that need to be taken care of, that they may not have access to, we try our hardest to get that taken care of when they are pregnant” (CA-R-PrimaryOB). As with leveraging relationships to secure care, pursuit of medical services that the prenatal policy was not necessarily intended to cover could be considered a work-around of a system that health care workers perceive as unjust; this is also explored further in the discussion section.
not asking about immigration status
The third most common theme to emerge relating to professional practice norms, mentioned by slightly more than one third of the respondents (n=13), was to not ask patients about their immigration status, which was sometimes described as an unwritten policy of the safety net health center. A patient support worker described this norm, saying “We don't ask about immigration status. Patients don't usually bring it up as well. We don't like to make patients feel uncomfortable, or questioned. So that is just the subject that we try to avoid” (CA-R-PatientSupport). Providers in other states also mentioned not inquiring about patient immigration status, sometimes in support of norms of treating all patients the same; a patient support worker from New York explained that “I really try not to differentiate [based on immigration status]. I would provide the same level and quality of assistance and support that I would for any patient. I guess I don't even look or pay attention [to status]” (NY-R-PatientSupport). The relative risks and benefits of maintaining this norm throughout the patient-provider relationship will be examined in the discussion section.
Ethical Tensions and Frustrations
Health care workers described two major ethical tensions and frustrations that they encountered in the course of providing or facilitating care for undocumented pregnant immigrants. These were inability to provide necessary services due to ineligibility and how patient fears related to immigration status affect their access to care. Although these themes were consistent across states, they manifested differently in different states and health center settings.
inability to provide necessary services
The most common frustration that health care workers described was an inability to provide necessary services; this frustration was described by more than half of the respondents (n=19). In Maryland, which has no prenatal policy, the unmet patient needs were often necessary medical services that pregnant patients need during pregnancy, while in the other states they were more often non-medical services, such as housing, or necessary medical care before or after pregnancy. One example of a provider being unable to connect a patient with a necessary medical service arose for a midwife in Maryland, who described her inability to send patients to specialty appointments, saying “I feel like my hands have been tied, there's nothing else I can do, that's been hard. It is hard because occasionally when you have to send them to specialists it's very, very hard to get specialists to agree to see them who they can afford to see” (MD-U-PrimaryOB). Another Maryland provider from a different health center recalled a time when she hesitated to recommend that a patient seek care for an abscess behind her tonsil because her immigration status made her ineligible for coverage. This provider reflected on this interaction, saying “it was just one of those moments where I hesitate for a second, like ‘I hate to send her to the ER, maybe it's not an abscess.’ And then having to catch yourself, wait a second, why am I telling her not to do something when I would tell the next person something differently?” (MD-R-PrimaryOB). Both Maryland providers struggled to reconcile their professional standards of care with the financial realities of their uninsured undocumented patients and the different levels of care that the state's lack of prenatal policy entailed.
The most common frustration that health care workers described was an inability to provide necessary services; this frustration was described by more than half of the respondents (n=19). In Maryland, which has no prenatal policy, the unmet patient needs were often necessary medical services that pregnant patients need during pregnancy, while in the other states they were more often non-medical services, such as housing, or necessary medical care before or after pregnancy.
Health care workers in other states reported experiencing trouble connecting pregnant patients with care outside of pregnancy. One provider from Nebraska had also worked in California, and so was able to offer a unique insight into the differences between the two implementations of the Unborn Child option. She observed that “I know this is just Nebraska, I also practiced in California for a time and it wasn't that way [there], but [Nebraska has] arbitrary, asinine limitations to care, especially in regards to after the pregnancy,” and noted that “if you want to be cost-effective and provide proper care, you need women's health as a whole cared for” (NE-U-Prima-ryOB). While this suggests that Nebraska's implementation may not sufficiently provide for post-natal care compared to California, a provider from California indicated that pre-pregnancy care is also imperfect and difficult to provide in that state. She asserted that “it would be important for women to be able to have access to preventive services like a mammogram, pap smear. Those services are limited now. I feel like if we could have some women's healthcare that would also help women entirely in their health” (CA-R-Nurse_MA). A mental health clinician in New York echoed this sentiment, expressing her belief that “In a perfect world everyone who comes to our office would be able to get the care that they need, not only just for their pregnancy…I feel like the whole system doesn't really allow me and people in my role to help ensure all of that, for everyone we work with” (NY-R-Nurse_MA). This idea that providers were unable to connect undocumented women with necessary health services that were unrelated to pregnancy was common in all four states, including those with more generous prenatal policies.
In a particularly revealing discussion of the limitations on care that undocumented patients experience, one physician from California described the challenges of not being able to provide equal access to care to all of her patients. This provider elaborated on her frustrations and those of other providers, saying:
I think everyone should [have] access to health-care and to insurance. So that frustrates me, that we have to kind of maneuver around the system to get people to where they need to be at times. You get to use some creativity, but … some people — they can even break the law at times, and I am not willing to do that. But I think you can sort of figure that out, that if you can't get what you want to do, people become creative and sometimes it may open the door to doing things that they probably shouldn't be doing. We don't do that within our clinic, but I have seen it done locally with other providers (CA-R-PrimaryOB).
While this provider is very clear that she does not break the law in trying to meet what she sees as her professional practice norm, her discussion of “maneuvering” and “creativity” suggests that her frustrations with the healthcare system may lead her to bend the rules for her patients. This response points to a significant ethical tension that reflects the distressing position into which the health care system forces providers when it requires them to treat undocumented patients differently from citizens and legally residing immigrants. This distress, and the workarounds devised to address it, are discussed further in the discussion section.
Although there were not many differences between urban and rural health centers, one interesting difference that emerged in relation to the inability to provide necessary services involved difficulties that undocumented patients experienced accessing health centers due to a lack of adequate transportation. Half of the rural health care workers (n=7) reported that their patients sometimes failed to show up for appointments because they were unable to travel to their health centers, some of which were quite remote or isolated, while no urban health care workers shared this frustration. One patient support worker from rural New York described the area around her health center, saying “it's really hard to navigate without a car. There's not a lot of public transportation. There are some buses, but yeah, that's definitely something that a lot of our patients have trouble with, the transportation” (NY-R-PatientSupport). This was also an issue for some providers who sought to connect their patients with specialty care that could not be provided in their health center; providers in rural California and rural Maryland described the challenge of sending patients to urban centers for specialty care. A physician from rural California described this issue, saying:
The only problem is because we are rural and some of our patients may have high risk problems, they need to go to [university] which is 2 hours away in [city] … They may have some concerns about transport — you know not having a driver's license; not having someone to take them; feeling exposed … when they drive because they can be pulled over for unimportant things and then they end up having problems and will get deported or have that hanging over their heads. (CA-R-Physician).
This transportation-related challenge was another reason why providers often felt unable to connect their patients with the medical services they needed. In the case of the rural Californian physician above, this transportation-related challenge also related to the second tension that health care workers experienced when providing care for undocumented patients.
patient fears related to immigration status affect access to care
More than half of the health care workers (n=18) reported that patient fears related to immigration status affect access to care, which they saw as a challenge they encountered when providing care to their undocumented pregnant patients. This challenge emerged in relation to a number of issues, including delaying the point in the pregnancy at which undocumented patients would often seek care, as well as the effect of recent political changes on patients' willingness to come to health centers at all and concerns that their immigration status would be shared with immigration enforcement. As one administrator from rural Nebraska acknowledged, “the majority of that population is scared to seek health care. I think what worries them is what will happen if someone finds out their status” (NE-Rural-Admin-1). These fears manifest in different ways. Some health care providers were concerned that fears related to immigration status were leading pregnant immigrants to seek prenatal care later into their pregnancy. A nurse from New York related this issue to the 2016 election, observing in early 2017 that her patients “are not actually accessing care as early as they may have 6 months or 1 year ago. So they are missing opportunities for me to provide healthcare to them, because they are presenting later for the care and by the time the insurance and everything is in place, it is hard to get scans and things that are [necessary]” (NY-U-Nurse_MA). Other respondents indicated that the election of Donald Trump had caused some patients to stop showing up altogether; a patient support worker from California observed that “we definitely noticed a drop after the inauguration. I would say I think it's going to pick back up again but it seems like a lot of people at the clinic noticed a drop in patients coming for a while after the inauguration due to fear” (CA-U-PatientSupport). Several respondents indicated that they had noticed that their undocumented patients' concerns about enhanced immigration enforcement and deportation by Immigration and Customs Enforcement (ICE) under the new administration were leading to this drop in prenatal care utilization.
Discussion
These findings illustrate the tensions that arise when health care workers' professional practice norms conflict with institutional or policy constraints that make their norms difficult to fulfill. A majority of respondents indicated that they view treating every patient the same as an important practice norm, yet many reported feeling frustrated that they were often unable to provide necessary services to their undocumented patients due to policy constraints. In addition to the potential maternalReference Wherry, Fabi, Schickendanz and Saloner13/childReference Swartz, Hainmueller, Lawrence and Rodriguez14 health effects of prenatal policies that provide undocumented immigrants with some but not all services that socioeconomically similar citizens would receive, the results of this study suggest that such policies could also give rise to signifi-cant moral distress in health care providers, especially among providers who work in low-income community health settings “for a reason” and believe that they are called to serve under-served populations.
This section will review these findings through the lens of Nancy Berlinger's model of workarounds in health care, which she develops in her book Are Workarounds Ethical? Managing Moral Problems in Health Care Systems. In her book, Berlinger describes moral distress as “an acute feeling of risk to one's own personal and professional integrity that is associated with the perception of powerlessness to prevent some wrong.”15 For health care workers who see inequitable access to health care as a moral wrong, their inability to provide all necessary services presents a distressing risk to their integrity.
According to Berlinger, one response to moral distress is to adopt workarounds. Workarounds are “navigational tool[s] devised to get around some barrier to getting the job done,” and include strategies that allow the health care worker to avoid responsibility for a problem, as well as strategies to avoid compliance with law, policies, or standards that impede their ability to do their jobs as they believe they should be done.16 Berlinger conceives of workarounds as ethically fraught; while they may help to alleviate the moral distress of providers, they can also raise unanticipated ethical issues for the provider and the institution in which they occur. She writes that some work-arounds may be “ethically problematic because they can sometimes lead to the normalization of deviance and to harm,” and additionally that they are “hard to talk about openly” because they are generally secret but also part of normal work.17 Berlinger suggests that workarounds are the result of complex systems that force a misalignment between “normal work” and “current rules,” and therefore a simple evaluation of their ethical content is elusive.18 This framing maps onto the various workarounds that respondents to this study reported as norms of practice. These work-arounds can be seen in some forms of advocating for patients, including both bending the rules relating to the services that are covered under a particular prenatal policy as well leveraging personal connections to secure medical treatment for individual patients. Another type of workaround is the problem-avoidance norm of not asking about immigration status. As Ber-linger suggests, both types of workaround present ethical challenges.
Among the types of workarounds identified by Ber-linger is “bending the rules.” Bending the rules is often done “in the interest of the individual patient…who, in the professional's view, would be treated inequitably [or] rendered worse off compared with others with similar needs if otherwise well-intentioned rules were followed.”19 Respondents who described getting additional services covered for patients during pregnancy may be engaged in this type of workaround by directing resources towards certain patients who would otherwise not be able to secure them. Berlinger distinguishes bending the rules from advocacy, observing that “bending the rules [is] likely to involve concealment or deception because the professional who is doing these things has an interest in avoiding scrutiny,” as is indicated by the New York patient advocate's use of the term “sneaking in.”20 The California provider who described “maneuvering around the system” and “using creativity” likely toed this line; while she is clear that she does not condone breaking the law for patients, she acknowledges that frustration with the healthcare system can lead people to do “things they probably shouldn't be doing” (CA-R-PrimaryOB). One ethical issue that such an approach raises is that rule-bending offers at best an individual or temporary solution, and can often fail to address and can even obscure the underlying justice problem. This suggests that those who engage in rule-bending should be critically aware of the ethical issues that it raises.
Another type of rule-bending workaround employed by health care workers is to expend personal capital to secure treatments for certain patients, as the midwife from urban Maryland did when she called her personal cardiologist to obtain charity care for a patient. While this action avoids the ethical concerns about deception that are related to “sneaking in” services, it can also raise issues of justice because it can involve “subjective judgments about who, in the professional's view, is worth bending the rules for.”21 As with other forms of rule-bending, this sort of individualized advocacy provides a temporary measure of relief for the moral distress of health care workers who are frustrated by a system that they perceive as unjust, but ultimately will not fix the underlying justice issue. In some cases this type of workaround can actually exacerbate injustice if health care workers make personal efforts for some patients but not all.
In addition to rule-bending workarounds, another type of workaround that Berlinger identifies is the “avoidance” workaround. The norm of not asking patients about their immigration status may be considered an avoidance workaround because it enables the health care worker to avoid having to confront issues related to immigration status head-on. Not asking about patient immigration status might indicate respect for a patient's privacy before a rapport has been established, especially given the reported effect of fears related to immigration on care-seeking behaviors. This is especially relevant in the current political environment, in which the Trump administration has dramatically increased immigration enforcement.Reference Chishti and Bolter22 Many respondents indicated that their patients' fears related to their immigration status had increased since the 2016 election, and that in some cases this had led to undocumented patients presenting later for care. These anecdotal data support the “chilling effect” phenomenon in which increased immigration enforcement reduces health care utilization by undocumented immigrants as well as members of mixed-status families that include people of various immigration statuses.Reference Page and Polk23 It may be the case, however, that if this practice of not discussing immigration is sustained throughout the course of the patient-provider relationship, it could also present risks to patient health or safety.
Even for patients who do seek care, their immigration status may have important implications for their health outcomes, given the relationship between immigration status and stress.Reference Arbona24 By avoiding conversations about immigration status, health care workers may be overlooking an important determinant of patient health. Confidential knowledge of a patient's status may be important context for patient behaviors and diagnoses, and also enables a health care worker to connect the patient to relevant resources and services. For this reason, advocacy groups like Sanctuary Doctoring recommend that providers create the opportunity for patients to choose to discuss their status by opening a dialogue about immigration, either by asking whether someone in the patient's family or group of friends was experiencing stress related to immigration status or through the use of fliers that indicate that the provider will not disclose their status.Reference Mejias-Beck, Kuczewski and Blair25 Sanctuary Doctoring also recommends that providers not record immigration status in the patient's chart, which aligns with the recommendations of the National Immigration Law Center (NILC).26 Similarly, the American Academy of Pediatrics (AAP) recommends that providers ask whether any family member “is potentially going to leave the family for any reason” rather than directly inquiring about the patient's status as a way of assessing deportation risk.27 In light of the potential benefits of confidentially discussing immigration status, the norm of not having important conversations about immigration status should be reframed as a norm of creating an opportunity for dialogue about immigration status while maintaining a norm of not recording undocumented status in a patient's chart.
In light of the potential benefits of confidentially discussing immigration status, the norm of not having important conversations about immigration status should be reframed as a norm of creating an opportunity for dialogue about immigration status while maintaining a norm of not recording undocumented status in a patient's chart.
Limitations
The findings of this study are limited by several key challenges. The most significant of these is the minimal transferability of the case study approach. Findings in a state with a particular prenatal policy may not be true in another state with the same policy, for any number of reasons, including demographic and political differences. There is a tradeoff between the breadth and depth of analysis when conducting case study research. In limiting the number of case states to four, this study opted for increased depth over additional breadth, which also limits transferability. This research may also be limited by researcher perspective or bias; although effort has been made to minimize the effect of bias, there is always a risk that it can shape the collection and analysis of data. This limitation was mitigated through constant researcher reflexivity, in the form of journaling and memos, as well through third-party review of the interview guides, notes, transcripts, and analysis codebook. Member checking was also used to validate findings with respondents from several of the safety net health centers.
There was an additional risk of selection bias, in that participation was completely voluntary, and only health care workers who were interested in the topic of the study opted to participate. This could limit the range of perspectives represented in this data, as health care workers with negative perceptions of undocumented patients may have been less likely to participate. Additionally, it should be noted that in this study, all Nebraska and some Maryland interviews were completed prior to the 2016 election, while all others were completed in the 11 months after. For this reason, it is difficult to accurately assess whether concerns related to the political climate were more common in some states than others. Finally, there is a risk of social desirability bias in these findings. Although participants were informed that their identities and the identity of the safety net health center in which they worked would be kept strictly confidential, it is possible that participants may have answered questions about their professional norms or the challenges they face at work in a way that would reflect positively upon them or their organization. Despite this risk, most discussions about the process through which undocumented immigrants accessed care and the professional norms and tensions they encountered at work were quite frank and generally reflected an honest and open rapport between the interviewer and respondents.
Conclusion
The American healthcare system is fragmented and complicated, and for undocumented immigrants and the health care workers who serve them, it is even more so. Between federal policy that limits spending on public insurance for undocumented immigrants to labor and delivery and state prenatal policies that cover some but not all necessary services during pregnancy, health care workers are often left with few choices for how to meet their pregnant undocumented patients' needs. This complex and patchwork system is a manifestation of policymakers “refusing to think through the consequences of excluding undocumented immigrants from reliable access to our health care system,” which repeatedly puts health care workers “into distressing and time-consuming binds as they try to respond to medical and social needs rather than being able to rely on a systemic solution for this foreseeable problem.”28 Even when state policies attempt to provide some amount of care to this vulnerable population, as with Nebraska, New York, and California, there are still a number of limitations to care based on immigration status. This gives rise to the types of moral dilemmas that health care workers described, such as the inability to provide all necessary services to patients, that can lead to the use of workarounds to secure medical treatment.
Given that these dilemmas are policy-driven and therefore largely foreseeable, Berlinger suggests that health centers should have institutional mechanisms in place that enable health care workers to critically examine their own practice norms and to discuss, in a safe environment, their concerns about the systemic constraints they encounter.Reference Berlinger and Raghavan29 Such options might help to reduce the moral distress of providers who feel that they have a duty to provide similar levels of care to all patients regardless of immigrations status and provide a way of bringing workarounds into the institutional discourse. Sharing information about advocacy-motivated workarounds that help health care workers connect patients with necessary services could address some of the ethical issues inherent in both the concealment and individualization of rule-bending for some undocumented patients. If a health center can systematize the (legal) workarounds that achieve better patient access to care in this way, the workarounds become part of the complex system that works for patients rather than against them.
Of course, the best solution may be to reconcile the policies with the professional practice norms of the health care workers who must carry them out; this would be beneficial to both providers and their undocumented patients. The discordance between policies that limit access to health care on the basis of immigration status and the conception of justice held by those who work in low-income healthcare settings indicates that one or the other must be wrong. Future theoretical work should explore this discordance and suggest normative conclusions regarding the justice implications of these prenatal policies in the practice context.
A note on language:
This paper refers to “pregnant women” because it reflects the language of the research participants and policies, but it should be noted that not all pregnant people are women, as transgender men and gender non-binary people can also be pregnant. Additionally, the use of the term “unborn child” is a reflection of the language of a policy rather than commentary on the personhood of a fetus.
