One of the interesting things about starting a new research project is its uncertainty. You’re not yet sure what you think about the issues you’re about to explore. I was reminded of this recently when, with colleagues here at the Center, I started work on a project on undocumented patients in the U.S. health care system—or rather, in the different systems that make up this fragmented system. There are more than eleven million undocumented residents of the United States. Most are low-income workers, or family members of these workers. Most are also uninsured, with no prospect of obtaining health insurance. Like anyone else who has a body, sometimes an undocumented resident gets sick. What happens next? This is a real and serious question, which is why it is a good research question for us.

The Hastings Center has long been interested in the ethics of that clinical encounter—what should happen when a health care professional is responsible for the care of a person who is sick?—and also in the ethics of the organization in which the encounter takes place. Here are some of the questions we will explore with our project’s advisory group: What obligations do different health care organizations formally recognize in providing access to primary, specialty, or emergency health care across a community that includes undocumented residents and other low-income residents? How do these obligations play out in practice? Who is willing to pay for what? Are the challenges of caring for undocumented patients discussed within an organization? Or are individual physicians, nurses, and social workers expected to sort this out on their own, whether by working the system, bending the rules, or “turfing” these patients—sending them somewhere else, hoping for the best, and also hoping they don’t come back?

This project requires us to look beyond the clinical and organizational levels of health care to ask, what are the ethics of the “safety net” in the United States today? What do we, as a society, believe we ought to do for a person who gets sick? If we believe that we ought to do something, at what point in this person’s care should it start to matter that the sick person is an undocumented resident? And how are these questions connected to other front-page questions: health reform, immigration reform, federal and state budgetary choices and constraints, and the values and politics that drive policy decisions?

Thinking about these questions while doing bioethics research is exciting. One of my favorite philosophers, Mary Midgley, advises those who would think and write about moral questions with practical implications to do this thinking and writing “not as shadowy desk-persons, but as the people that we actually are most of the time.” Doing so keeps us honest. It reminds us that the job of bioethics is neither to issue lofty recommendations without worrying about practical matters, nor to write operational manuals. Usually, our job is to help someone or some group think through uncertainty as they face a real and serious challenge. To do this well, it helps to have empathy, and to know what uncertainty feels like.

—Nancy Berlinger
Research Scholar

Originally published in the Hastings Center Report 41, no. 5 (2011): inside front cover. ©2011 The Hastings Center.

10/11/2011

(Garrison, NY) The Hastings Center is exploring the ethical challenges that clinicians and organizations face when providing medical care to undocumented immigrants in the United States. The project is supported by a grant from the Overbrook Foundation Domestic Human Rights Program.

Most of the estimated 11 million undocumented residents of the U.S. have no health insurance and are ineligible for public insurance programs. They are prohibited from obtaining insurance under the 2010 Patient Protection and Affordable Care Act.

When they become sick or injured, these low-income patients have limited access to health care. Organizations that are federally mandated to provide some level of care on the basis of medical need, such as emergency departments, federally qualified health centers, and health programs for farm workers, face difficult resource allocation challenges when undocumented patients’ medical needs exceed available resources.

“Health care professionals can be deeply troubled when they encounter situations that seem unfair,” says Nancy Berlinger, a Hastings Center scholar who is co-director of the project. “How to provide good care to patients who cannot afford to pay for care is one of those situations. When a patient is also undocumented, the situation becomes even more complex. This project aims to help clinicians and organizations by exploring the difficult questions of how ethical obligations compete with economic constraints, conflicting mandates, and political considerations.”

Michael Gusmano, the other co-director of the project, adds, “We will review existing policies and regulations and identify how they shape access to care for undocumented patients.

“We know that some laws and programs are designed to provide access to health care for this population and others explicitly forbid the use of public funds to pay for care for this population,” he says. “This creates a complex policy environment that causes difficulties for the patients, health care professionals, and health care organizations. Our project seeks to clarify, as much as possible, these policy choices and identify their consequences.”

At a meeting in September in New York, the project’s advisory group discussed several questions: Is there a right to health care implicit in the U.S.? In a society with a large immigrant population like the U.S., how are our social values expressed in how we view undocumented patients? What ethical guidance may help health care organizations and state and federal policymakers in a challenging economic environment at a time when the regulations are changing under the ACA.

The project’s advisory group includes clinicians and health care leaders from organizations that serve communities that include undocumented patients. Project advisors also include experts in human rights law and theory, health care ethics, and safety net health policy. The project will produce a special report, a Web site with resources for the public, and journal articles.