Nancy Berlinger and Rajeev Raghavan, “The Ethics of Advocacy for Undocumented Patients,”
The Ethics of Advocacy for Undocumented Patients
Article first published online: 11 JAN 2013
© 2013 by The Hastings Center
Hastings Center Report
Volume 43, Issue 1, pages 14–17, January-February 2013
How to Cite
Berlinger, N. and Raghavan, R. (2013), The Ethics of Advocacy for Undocumented Patients. Hastings Center Report, 43: 14–17. doi: 10.1002/hast.126
- Issue published online: 11 JAN 2013
- Article first published online: 11 JAN 2013
- Human Rights program of The Overbrook Foundation
Approximately 11.2 million undocumented immigrants have settled in the United States. Providing health care to these residents is an everyday concern for the clinicians and health care organizations who serve them. Uncertain how to proceed in the face of severe financial constraints, clinicians may improvise remedies–a strategy that allows our society to avoid confronting the clinical and organizational implications of public policy gaps. There is no simple solution-no quick fix-that will work across organizations (in particular, hospitals with emergency departments) in states with different concentrations of undocumented immigrants, varying public and private resources for safety-net health care, and differing approaches to law and policy concerning the rights of immigrants. However, every hospital can help its clinicians by addressing access to health care for undocumented immigrants as an ethical issue. We offer some recommendations for doing this in a structured, fair, and transparent way. We also describe the problems that may result when clinicians are forced to grapple with this issue on their own.
Approximately 11.2 million undocumented immigrants have settled in the United States. Providing health care to these residents is an everyday concern for the clinicians and health care organizations who serve them. The Affordable Care Act of 2010 excludes undocumented immigrants (and legal immigrants here for fewer than fve years) from its benefits. Under the ACA, they remain ineligible for Medicaid, the public insurance program for low-income residents, and they also cannot purchase private health insurance through the state-level insurance exchanges that will be created as the ACA is implemented. These exclusions apply as well to the hundreds of thousands of young undocumented immigrants who became potentially eligible for deferrals of deportation last year.
Uncertain how to proceed in the face of these financial constraints, clinicians may improvise remedies—a strategy that allows our society to avoid confronting the clinical and organizational implications of public policy gaps. While one of the consequences of the 2012 election may be comprehensive immigration reform that gives undocumented immigrants a path to citizenship, immigration reform on its own does not ensure access to health care. Attention to the health care needs of this low-income population, and to the concerns of health care professionals, cannot wait on consensus around immigration. There is no simple solution—no quick fix—that will work across organizations (in particular, hospitals with emergency departments) in states with different concentrations of undocumented immigrants, varying public and private resources for safety-net health care, and differing approaches to law and policy concerning the rights of immigrants. However, every hospital can help its clinicians by addressing access to health care for undocumented immigrants as an ethical issue. Here, we offer some recommendations for doing this in a structured, fair, and transparent way. We also describe the problems that may result when clinicians are forced to grapple with this issue on their own.
Studies show that undocumented immigrants seek medical care less often than the general population. This is because they are relatively young, they often have jobs that don't allow time to visit a doctor or health care facility, and they may fear deportation when they venture outside their known communities. When they do seek care, they have long been eligible for emergency medical treatment, as mandated by the Emergency Medical Treatment and Active Labor Act and funded by Department of Health and Human Services allocations and emergency Medicaid reimbursements to hospitals. They are also eligible for comprehensive primary care offered by eight thousand nonprofit community health facilities across the United States and funded by the Health Resource and Service Agency.
But what happens when they have a serious illness or chronic medical condition (which will become more likely as the population ages) that does not readily fit into “emergency” or “primary” care? Undocumented patients who initially seek emergency treatment may later need cancer therapies, dialysis for end-stage renal disease, or even joint replacement for severe arthritis. Clinicians (including physicians, nurse practitioners, registered nurses, physician assistants, and social workers) who work in emergency departments in safety-net hospitals generally strive to provide good care to and advocate for these patients, who may not speak English, have few resources, and are sometimes wary of providing identifying information. But exactly how to be an effective advocate and provide sufficient care in situations where an undocumented patient's medical needs exceed his or her financial resources presents ethical challenges to these frontline clinicians. Under these conditions, clinicians may perceive a range of informal practices to be expedient or compulsory so that patients can be treated under EMTALA provisions.
Acting as advocate. Within an advocacy role—in which clinicians allocate their own time, for example, to help a patient secure charity care from a hospital or a private organization—a clinician's own emotions and value judgments may inform her response to a situation. She may think, “This young man was brought here as a child and shouldn't have to suffer the consequences of his parents’ decision”; or, “This woman was injured at work and shouldn't be cast aside now”; or even, “I feel good about helping this family.” In the interest of fairness, clinicians should acknowledge their own responses, which could lead them to advocate for one patient (or one type of patient) but not another. As one physician and clinical ethicist puts it, ethical practice as an advocate means being aware of one's own “cuteness index”—the personal characteristics an individual finds appealing or rewarding—and the potential for these subjective factors to influence the allocation of one's time among patients with equivalent medical needs in potentially inequitable ways. Clinicians should also be alert to the ethical hazards of using perceived social worth (for example, characterizing one patient as more or less “deserving” than another) to allocate health care resources.
Clinicians who work in safety-net organizations should pay attention to these ongoing, even daily, questions arising in practice. The safety net must serve many populations whose members have difficulty obtaining health care—for instance, the working poor who do not qualify for public insurance on grounds of income, rather than immigration status. Some populations who rely on the safety net for health care, such as the homeless and the chronically mentally ill, also frequently rely on health care professionals to serve as their advocates, linking health care and social services. Safety-net organizations can encourage a thoughtful and ethical approach to these many demands by providing opportunities for clinicians to discuss both how they allocate their time among different patients and populations and how they make judgments and participate in resource allocation, directly or indirectly, through their decisions to advocate (or not to advocate) for particular patients. The advocacy role is a deeply meaningful and satisfying one to professionals who have chosen to work in safety-net hospitals, but it can be ethically problematic if unreflective advocacy leads to unfair or poorly planned, ad hoc resource allocation. Understanding this can strengthen clinical practice.
Bending the rules. Advocacy may shade into bending the rules when clinical judgment conflicts with resource allocation rules. Studies differentiate this practice from the kind of rule-breaking done by a clinician who rejects or is indifferent to rules. The clinician who bends the rules (for example, by “tailoring” a description of a patient's condition to meet a threshold) explains her actions to herself and perhaps to colleagues as part of advocacy: a “creative” way to help this patient secure needed care. Bending the rules may also alleviate distress at the prospect of delivering a perceived lower standard of care that has the potential for poorer outcomes. In these situations, some clinicians may consider “stretching the truth” to benefit an undocumented patient to be effective advocacy, while others find it problematic.
Working the system. Bending the rules may transition into working the system when it becomes a more organized practice. This often involves identifying a loophole or other weak spot in a resource allocation system—for instance, the wording of eligibility criteria that would otherwise exclude some population or condition. (Some critics call this “gaming” the system.) Haavi Morreim points out that gaming the system begins to differ from advocacy when a physician (or other health care professional) attempts “to secure resources that were not, technically at least, intended for this patient.” For example, many undocumented immigrants with end-stage renal disease do receive chronic hemodialysis through the emergency department, under EMTALA, because outpatient dialysis centers do not accept patients ineligible for the Medicare ESRD program. Is using emergency care provisions to secure chronic care “gaming the system”? Is using the resources at hand to provide appropriate medical management under less-than-optimal conditions just good advocacy? Is it civil disobedience, in which rules are publicly challenged with the aim of reform? Or is it all three?
All hospitals serving communities with undocumented populations should make time for candid, reflective, and nonpunitive discussions of patient care challenges related to patients’ undocumented status. Such open discussions do not routinely occur, even in hospitals in cities and states known to have large undocumented resident populations. In the interest of fairness to these patients and to the clinicians who are forced into ethically challenging situations when caring for them, hospitals must be both responsive and transparent in how they address these issues.
Some hospital ethics committees place the care of undocumented patients on their discussion agenda periodically. Medical or interdisciplinary grand rounds offer other opportunities to talk about this issue. These discussions should be facilitated to encourage expression of different perspectives. Participants should include the clinical professions frequently involved in the care of undocumented patients—physicians, nurse practitioners, staff nurses, physician assistants, and social workers, among others—plus administrators. All medical specialties commonly involved in these cases should also be represented. A case study or journal article, along with up-to-date factual information about the undocumented population and relevant health policy, both nationally and in a particular state or city, can aid this discussion.
A well-facilitated discussion process offers clinicians and administrators insight into the challenges at their hospital, including which departments may bear greater responsibility for patient advocacy or feel forced to improvise to provide medically appropriate care. This process can also help hospital leaders become better informed, since they are responsible for protecting safety-net funding or investing in care for vulnerable populations.
Medical repatriation. Another topic that should be on the discussion agenda is the allocation of responsibility when the care of hospitalized undocumented patients becomes costly. Even in health care organizations with a commitment to social justice for patients who lack access to health care, the question of how much responsibility a hospital bears for the continuing health care needs of a patient admitted under EMTALA and no longer in need of acute-care services may be an uncomfortable one. For example, medical repatriation—in which an undocumented patient in need of subacute care is transported to his home country—raises significant ethical questions. In some cases, this discharge plan may meet the “safe and effective” standard and be acceptable to—even preferred by—the patient. If carried out without sufficient attention to ethical considerations, however, medical repatriation (and its local variations, such as suggesting to an undocumented patient that another hospital or jurisdiction will provide charity care without confrming this prior to discharge) may be akin to “turfing” a patient (a medical colloquialism referring to an inappropriate transfer of care) from a private to a public hospital to shift costs. As with the use of emergency care provisions to manage chronic conditions, discussion of medical repatriation should emphasize the lack of public policy (here, undocumented patients’ ineligibility for public insurance to cover subacute care) that drives these clinical and organizational problems.
Ricardo Nuila, a Texas-based physician, wrote about this nested set of problems when describing the medical repatriation of Cifuentes, an undocumented immigrant from Guatemala who was diagnosed with metastatic cancer after his boss “realized he'd become a liability [and] dropped him off at our hospital”:
For many undocumented immigrants, terminal illness is a revolving door: 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.
Cifuentes “asked to go home.” (Another of Nuila's undocumented patients with a similar diagnosis first asked for a lethal dose of morphine, then asked to be discharged.) From Nuila's perspective, a well-arranged medical repatriation for a dying patient, involving collaboration between a palliative care team and a home-country consulate, “can be a win-win”: the patient's dying wish is realized, and his or her end-of-life care will not tap into safety-net funds in the United States. However, Nuila also points out the many problems with viewing medical repatriation as a simple solution for dying patients, or one that is always humane: for example, the potential for undue pressure or coercion, or the fact that repatriation is often considered because undocumented patients who are dying lack access to hospice care unless a hospice accepts them as charity-care patients. (Undocumented immigrants are ineligible for the Medicare hospice benefit that funds most hospice programs in the United States.) Above all, he returns to the context in which these decisions are made— restrictive “emergency” provisions that compel dying people to return to the hospital immediately after discharge as they endure consecutive pain or symptom crises that continuous palliative care could prevent.
As we scrutinize our health care system for ways to improve access and outcomes while lowering costs, excluding a large resident population from systemic reforms, even as we turn serious attention to immigration reform, puts the burden of caring for the undocumented entirely on the shoulders of clinicians and the organizations in which they work. Forcing health care professionals into ethical dilemmas and moral distress should not be an option for our society. Policymakers should resist the temptation to shift our national responsibility to individuals and organizations and instead seek guidance from those experienced in meeting the health care needs of their undocumented patients.
We thank Michael K. Gusmano of The Hastings Center for his thoughtful review of this manuscript; the advisory group for the Undocumented Patients research project—in particular, Tia Powell—for its members’ insights during our meeting on September 12–13, 2011; and the Human Rights program of The Overbrook Foundation for its support of this project.
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