Of all the forms of inequality, injustice in health care is the most shocking and inhumane.
There are approximately 11 million undocumented immigrants in the United States (U.S.) and most of them have no access to primary healthcare (Berlinger & Raghavan, 2013; Acosta & Aguilar-Gaxiola, 2014). In addition to the media focus on whether or not the United States should allow more immigrants to enter the country, there is an additional question that gets little exposure: What are the ethics of advocacy for these individuals when they become undocumented patients?
Consider this case study: A 22-year-old construction worker fell from a roof and was admitted to a local hospital with a neck injury. His injury resulted in quadriplegia, leaving him dependent on a ventilator. His acute needs have now been met in the hospital, and he is ready for discharge; however, he has no insurance and is an undocumented worker. He has no nearby family and is not eligible for any long-term care facilities because of his insurance status. How should his discharge be handled? (Parsi & Hossa, 2012).
Faden (2009) argued that decent health coverage is a basic human right and that “a just nation should support that right for everyone, regardless of why or how a person is in the country” (para. 9). The problem of providing needed care for undocumented patients is an everyday concern for clinicians and healthcare organizations (Berlinger & Raghavan, 2013). Healthcare providers who care for these patients need clear guidance to help them answer an unresolved societal question: What share of social goods is owed to undocumented residents as persons and as members of society, and how should the delivery of health care be authorized and paid for? (Berlinger & Gusmano, n.d., para. 1). Failure to address this question can result in inconsistent and ineffective ‘solutions’ that may be unfair to patients, involve inequitable allocation of resources, and fail to address the need for national strategies to reform health policy.
Although the Affordable Care Act (ACA) of 2010 made many improvements in ensuring care for populations who were previously not covered by insurance, undocumented immigrants are excluded from these ACA benefits, as well as from most other entitlement programs (Gusmano, 2012a). With the exception of emergency medical care, undocumented immigrants are not eligible for federally funded public health insurance programs, such as Medicare, Medicaid, and the Child Health Insurance Program (CHIP) (Gusmano, 2012b). Some states and local governments offer healthcare coverage to undocumented immigrants through their own funds, such as the New York state Medicaid fund, Healthy Kids program in San Francisco, and the All Kids program in Illinois (Gusmano, 2012b). California, which has large numbers of undocumented immigrants, is taking important steps to broaden affordable healthcare options for this population, including extending Medi-Cal coverage to undocumented children (McConville, Hill, Ugo, & Hayes, 2015). In addition, some ‘safety-net’ providers, such as public and not-for-profit hospitals, federally qualified community health centers (FQHCs), and migrant health centers, provide care for undocumented immigrants (Gusmano, 2012b). Without a national policy for dealing with this challenge, however, there are extensive financial pressures on safety-net healthcare organizations and hospitals, leading to ethical challenges for ensuring appropriate care for undocumented patients (Acosta & Aguilar-Gaxiola, 2014).
The 1986 Emergency Medical Treatment and Active Labor Act (EMTALA) requires that all patients who arrive at an Emergency Department (ED) in a hospital that participates in Medicare, including undocumented immigrants, must be given an initial screening and receive necessary treatment until stable. But as in the case study above, discharge from the hospital may be a complex and difficult process. Since undocumented patients are not eligible for public assistance, they are often denied admission to long-term care facilities. If they do not have family support, it is difficult to discharge them to a safe location. These situations of complex discharges place heavy burdens on hospitals and lead to growing ethical concerns (Parsi & Hossa, 2012).
Hospitals and healthcare providers who try to honor the ethical principles of beneficence and nonmalificence may have concerns about ensuring principles of justice. The principle of autonomy may be violated if a patient is discharged without his or her consent, which is what occurred in the case study described above. The hospital administration decided to repatriate the patient; repatriation is a process in which hospitals work with transportation firms to transport undocumented patients to their country of origin. Kuczewski (2012) suggested that three standards should be met in order for an instance of repatriation to be ethical: (a) the patient’s best interests, (b) medical due diligence, and (c) informed consent. At least one of these standards was not met in the case described above, as the patient was repatriated to Mexico, his country of origin without his consent (Parsi & Hossa, 2012).
Undocumented immigrants are not heavy users of healthcare. Studies consistently show that this population consumes less health care than U.S. citizens or legal immigrants (Gusmano, 2012a). Gusmano also noted that there is considerable evidence that many undocumented immigrants live with unmet healthcare needs. Some individuals avoid seeking medical care completely because of fear that healthcare providers may be associated with U.S. Department of Homeland Security and that they may be deported (AHC Media, 2014). Depression and isolation are common among this primarily low-income population; and providers often have difficulty in securing referrals for mental health care (Rath, 2013).
End-of-life care may present unique challenges for undocumented immigrants. These individuals may be fearful not only of death but of how their undocumented status will affect their care and their families’ quality of life. Kuczewski stated that end-of-life decision making for undocumented patients should be ‘ethically indistinguishable’ from the decision making process for any other patient or family (AHC Media, 2014). End-of-life care poses challenges at both ends of the ethical spectrum. On one had there may be implicit pressures to transition to comfort care in order to decrease the financial burden of the institution. On the other hand, Kuczewski noted that there is anecdotal evidence that healthcare providers may be reluctant to stop treatment out of fear that they may be influenced unduly by financial dilemmas; and thus they may overtreat the patient. The goal for healthcare providers should be to help undocumented patients and their families make end-of-life decisions based on their medical situation and values, not their undocumented status.
Parsi and Hossa (2012) have suggested that we may need to move beyond traditional ethical principles for addressing the difficult issues that surround health care for undocumented patients. They have noted that an organizational ethics framework may be helpful in confronting these issues. Organizational ethics focuses on stakeholders’ interests. In the case of ethical concerns related to undocumented patients, stakeholders may include patients, family members, healthcare professionals, administrators, long-term care facilities, government agencies, and local, state, and national governments.
An organizational ethics framework attempts to identify ways to balance the interests of various stakeholders while remaining committed to issues, such as stewardship, integrity, and mission. For example, given that undocumented patients are not eligible for Medicare coverage to receive dialysis for kidney failure, providing dialysis through charity care is a humane alternative that may be more cost effective than having patients appear at the ED for treatment each time they are in crisis (AHC Media, 2014). All stakeholders involved with health care for undocumented patients need to discuss strategies for allocation of scarce resources while respecting and preserving each individual’s dignity.
Berlinger and Raghavan (2013) noted that the healthcare needs of this vulnerable population cannot wait for a national consensus around immigration. There is no simple solution that will work across all healthcare institutions in states with different concentrations of undocumented immigrants and different approaches to law and public/private policies concerning the rights of immigrants. However, nurses and all healthcare providers need to address undocumented patients’ access to health care as an ethical issue. It should be a research priority to gather data on the public health consequences and long-term cost of the morbidity associated with present health care limitations for undocumented patients. There is a need for more open conversations on both the micro and the macro levels, along with implementation of creative models for ethical and cost-effective care of this population (Parsi & Hossa, 2012).
Communities need to find ways to make outpatient care and housing resources available for undocumented patients. Hospitals need to study their policies for charity cases and develop a proactive plan to identify undocumented patients prior to or immediately upon admission (Parsi & Hossa, 2012). Professional associations representing health professionals should take an advocacy role in addressing the ethical implications of current approaches to providing health care for undocumented patients.
Undocumented patients are particularly vulnerable to unjust treatment, especially those with chronic or long-term conditions (AHC Media, 2014). Faden (2009) argued that even though immigrants may be in our country illegally, the magnitude of their crime does not justify denying their basic right to health care. She noted that the problem of illegal immigration should be solved by immigration policy, not health policy. However, nurses and other healthcare providers need to advocate for the development and implementation of equitable and sustainable healthcare policies that can help to ensure just care for this vulnerable population.
Jeanne Merkle Sorrell, PhD, RN, FAAN
Acosta, D. A., & Aguilar-Gaxiola, S. (2014). Academic health centers and care ofundocumented immigrants in the United States: Servant leaders or uncourageousfollowers? Academic Medicine, 89(4), 540-543. doi:10.1097/ACM.0000000000000182