Field Notes: Out of the Shadows

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.