Undocumented patients face unique ethical concerns with end-of-life care
Ethicists must "use their moral suasion"
Executive Summary
Undocumented patients are particularly vulnerable to unjust treatment, particularly those with chronic or long-term conditions. Bioethicists can advocate for ethical care by:
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Adhering to the same good practices for end-of-life decisions that are used for other patients.
Ensuring that providers are not erroneously evaluating the relative benefits and burdens of medical treatment.
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Seeking discussions with administrators who oversee charity care and medically complex discharge policies and procedures.
In one sense, undocumented patients are like any other patients — some have health insurance, but many will not. "What’s particularly challenging is that undocumented patients who are uninsured will usually not qualify for the safety net programs that provide assistance for similar patients with citizenship," says Mark Kuczewski, PhD, chair of the Department of Medical Education and director of the Neiswanger Institute for Bioethics at Loyola University in Maywood, IL.
As a result, undocumented patients are particularly vulnerable to unjust treatment, he says — especially those with chronic or long-term conditions.
"It is imperative that ethicists use their moral suasion to advocate for quality care and options equivalent to those established as standard for similarly situated uninsured patients," urges Kuczewski.
Avoiding care due to fear of deportation
Many undocumented patients lack access to medical care or treatment, unless they visit the emergency department. "It is important for medical providers to understand that failure to follow up with return medical appointments or medications may be because of limited funds and no health care insurance, rather than resistance to medical treatment," says Elaine P. Congress, DSW, LCSW, associate dean and professor at Fordham University in New York City.
Some undocumented individuals avoid medical treatment completely because they view medical providers as associated with Homeland Security, Congress adds.
"Certainly the most dramatic unethical practice is forced medical deportation," says Kuczewski. "This situation arises when a patient needs long-term medically complex care but is no longer suitable for the acute care environment."1
For instance, a hospital might try to discharge an injured patient who needs long-term ventilator support to their country of birth. "To do so without the informed consent of the patient is ethically inappropriate, as it violates a basic norm of clinical ethics," argues Kuczewski.
Furthermore, forced medical repatriation is likely to harm the relationship between the hospital and the local immigrant community. "If the community views the hospital as an arm of immigration enforcement, many patients will not present until much later in their course of illness, resulting in poorer outcomes and more costly care," says Kuczewski.
"Ethically indistinguishable" care
End-of-life decision making for undocumented patients should be "ethically indistinguishable" from the decision-making process utilized with any other patient or family, says Kuczewski.
"End-of-life care [for undocu-mented patients] poses challenges at both ends of the ethical spectrum," he notes. As with any uninsured patient, there may be implicit pressures to transition to comfort care in order to relieve the institution’s financial burden.
"However, anecdotal evidence also suggests that sometimes well-intentioned care teams may be reluctant to transition the patient to comfort care, out of fear that they might be using death to relieve financial dilemmas," says Kuczewski.
As a result, some undocumented patients end up being overtreated, because health care teams are re-luctant to recommend forgoing or delaying procedures.
"The goal for ethicists must be to assist undocumented patients and their families to make end-of-life decisions in a manner that is appropriate for the patient, based on his or her medical situation and values," underscores Kuczewski.
Few receive organ transplants
Some high-profile cases have spotlighted the difficulties of undocumented patients in need of organ transplants such as kidneys or livers, including finding funds for follow-up care such as anti-rejection medications.2
"Again, the challenge is to help facilitate treatment that is similar to the way other patients are treated. This is the bioethical principle of justice," says Kuczewski.
U.S. citizens and residents who are patients with renal failure are virtually all covered by Medicare to receive dialysis or a kidney transplant. "Justice requires that the hospital do all within its power to deliver similar treatment to their patients," underscores Kuczewski.
Administering dialysis on an ongoing charity care basis is more humane and, often, more cost effective than having the patient re-present in extremis at the emergency department each time they are in crisis, he adds.
"It may fall to the ethicist to help his or her colleagues understand that when an undocumented patient is uninsured, that patient is treated like any other uninsured patient," says Kuczewski.
In some cases, that may mean that the patient does not receive needed treatments. "Few indigent and uninsured patients receive liver transplants in the United States," notes Kuczewski.
A patient’s undocumented status does not impose some new obligation on a hospital to provide care it normally does not offer to other uninsured patients, Kuczewski explains. "While this is tragic, and we can argue about whether such care should be provided to everyone, we must be careful not to give significance to a patient’s immigration status where it is not relevant per se," he says.
Kuczewski recommends these practices to ensure ethical care of undocumented patients:
Adhere to the same good practices that are used to facilitate quality end-of-life decisions for other patients.
"Ethicists can help the health care team to be sure they are not erroneously evaluating the relative benefits and burdens of medical treatment," he says.
For instance, clinicians might assume that they cannot discharge a patient who has homecare needs because of a lack of benefits for such care. In such cases, bioethicists can suggest partnering with families to find potential alternatives such as hiring informal caregivers who can be trained to address the patient’s basic needs.
"Conversely, out of fear of too quickly giving up on the patient because of immigration status, teams may cling to very low probabilities of meaningful recovery," he adds.
Seek discussions with high-level administrators who oversee charity care and medically complex discharge policies and procedures.
During these meetings, bioethicists can actively participate in finding creative solutions to ensure undocumented patients receive the same level of care and options as other patients. "These discussions should not be one-sided," says Kuczewski.
- Kuczewski MG. Can medical repatriation be ethical? Establishing best practices. American Journal of Bioethics 2012;12(9):1-5.
- Holtz M. Illegal immigrant gets kidney. Chicago Tribune. December 29, 2012. Accessed at http://articles.chicagotribune.com.
