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