It is June in Houston and unseasonably dry, at least at 5:45 in the morning. Outside Ben Taub Hospital in the day’s first light, you can just begin to make out the forms of people sleeping on benches in the park across the street, patients still in paper scrubs who’ve been discharged but who have nowhere else to go. At this hour, inside the emergency room, the scene isn’t all that different. People lingering in the trauma center’s waiting room look less like anxious family members waiting for updates and more like passengers at a snowed-in airport. The blankets are out, CNN runs muted in the background, and anyone able to sleep does so across a row of vinyl armchairs. At one end of the waiting room, the triage nurse sits beside the vital-signs machine. Typically, I never see her. “Where are the ESRDers?” I ask, meaning the patients who are here because of end-stage renal disease. She sweeps her arm across the room. “Everywhere,” she says. “Where do we line them up?”
Things work a little differently now, she explains, as opposed to four years ago, the last time we worked in triage together: “A provider sees them with labs in hand, so that when 6C calls”—meaning the dialysis unit—“we can send them up.” She squints behind her glasses, either from fatigue or to look for the ER doc. “There she is.”
In a partitioned-off corner, the emergency-room doctor rifles through patient charts. I introduce myself to her tribally—“I’m internal medicine”—the way soldiers from different services might do in bunkers. She doesn’t bat an eye. “I work a lot with our undocumented patients,” I add, but still she says nothing. “I also speak Spanish.”
“Great,” she says, handing me a blue folder from her bin. “Sometimes I have trouble with the names.”
The first chart inside the folder is for a patient named Rogelio and lists “Disease Management F/U” (i.e. “follow-up”) as his chief complaint. As medical students, we are taught to use the patient’s own words—“My chest hurts!” “I can’t breathe!”—for this vital portion of the history. But this is emergency-room medicine, where the doctors are more interested in determining sick versus not sick than they are in the patient’s story.
Moreover, what has been written here isn’t a symptom; it’s code, a specific language used to designate Rogelio as an undocumented patient without coverage to pay for treatment of his chronic kidney disease. Patients like Rogelio who have lived in the United States for years but cannot qualify for federal funding through Medicare or Medicaid must visit emergency rooms, sometimes twice a week, for life-saving treatment. Because of this, cities with large undocumented-immigrant populations have had to develop novel ways of providing health care to this group.
“Rogelio,” I call out.
In the waiting room, among the sleeping, a young man stands up, wearing jeans and big, black boots caked with mud, a cap that says HOUSTON—no sports team, just HOUSTON—and a rosary around his neck. Just above the rosary, dangling out of his right jugular, is a cigar-shaped wad of cotton encasing a dialysis catheter, what doctors call a Permacath. As he enters the exam room, I can see that the gauze fibrils are coming loose and that his skin has turned a dollar-bill hue. Wrapped within the gauze—which extends about the width of two thumbs from his neck—is a large-bore IV with two syringe tips, one colored red, the other blue. This plastic tubing continues on (though sometimes it is dislodged) inside the young man’s body, down his jugular and the entire length of the superior vena cava until it reaches a junction with the heart. Sutures have been sewn below the jaw to secure this catheter in place, and a clear dressing about the size of a credit card overlays the tube’s point of entry. This dressing appears to have been picked at, if not fully peeled off and reapplied.
He doesn’t look that sick. Often in medicine, the physiognomy is the illness. With liver disease, for instance, stigmata on a patient’s body—prominent belly veins, yellow beneath the tongue—provides a way to measure organ damage and, consequently, the risk of further illness. But Rogelio is smiling, and moreover, at twenty-three, he’s young.
Using me as a translator, the emergency-room doctor asks Rogelio about symptoms: Chest pain? Shortness of breath like you’re drowning? Vomiting?
“Dolor de cabeza,” Rogelio says (headache), plus tunnel vision, nausea, fatigue—extreme fatigue, such high levels of it that he can no longer scale a ladder or work.
I ask him again, in Spanish, “Are you sure you don’t have chest pain and shortness of breath?” Again Rogelio shakes his head.
What he does not realize, of course, is that he is competing for care against patients who know the system, who know that improving their chances of getting decent treatment begins here, where “chest pain” trumps a “headache” and “shortness of breath” is prioritized over “nausea.” Many go further still, consuming the sludge in canned tomatoes or devouring bunches of bananas, overloading on salt or jacking up their potassium levels before getting blood work done so that they can push their lab results past the hospital’s threshold for emergent dialysis. These people know what it takes to get better when you don’t have Medicare: You must first make your state appear worse—much worse, put yourself within striking distance of an arrhythmia or suffocating pulmonary edema—if you want to receive the treatment that will help you. This is how it works here. So when I say “dolor de pecho” and “shortness of breath like you’re drowning,” Rogelio needs to nod with distress, the way his brethren do. At this rate, it will take him another three visits to the emergency room to figure out this strategy.
One of my favorite lines to spring on medical students during rounds is the title of Emily Dickinson’s poem “Tell all the truth but tell it slant.” Obviously, mistranslating Rogelio would be a lie, but it would also be an embellishment for the patient’s benefit, in much the same way that a note to an employer provides a legitimate excuse for missing work, or massaging a diagnosis (“Possible brain tumor”) allows for insurance to cover a test—or, at this hospital, characterizing for Border Patrol just how close one of your patients is to dying so that family might be allowed to visit. This happens all the time in medicine. Most doctors not only think it’s okay to stretch the truth for their patients, many consider it part of our unwritten professional code. But while emphasizing his shortness of breath might keep Rogelio in the emergency room longer, there’s really only one thing the emergency-room doctor is waiting for—the results of the blood work—to decide what treatment to give him.
As a practicing internal-medicine doctor in Houston’s largest safety-net hospital, I take care of patients like Rogelio all the time. I receive a text message from the emergency room—“Volume overload, ESRD”—followed by a patient’s medical-record number and location. I take the stairs down to the Holding Area, where I perform a physical and gather the patient’s medical history and write admission orders (diet, nursing instructions, medications, procedures, etc.). Once the patient’s chief complaint has been satisfied—this can take anywhere from hours to months—I type in the order “Discharge” and write a summary of the hospitalization, which I then file electronically within the chart. This can start to seem easy after a while, since it isn’t so much the individual decisions as the endurance (How long can I keep this up?) that challenges you. Something called algorithmania—looking at a patient as an illness to be solved through a series of steps—creeps into your practice. High potassium? Give Kayexalate. Crackles in the lungs? IV Lasix. Looks sick? Call renal.
It’s easy to break a patient like Rogelio—Mexican and poor and chronically ill—down to his potassium level and to make medical decisions according to a number. But that’s only part of the story of how the undocumented ill are cared for here in Houston. Within this city’s history—a history that includes segregation during the 1960s, a large immigrant population, strong economic growth over the past half century, not to mention the world’s largest medical center—is the story of how Houston sought local solutions to provide compassionate care to its indigent and undocumented, the latter of which, some might say, have helped the city grow. Rogelio might not realize it, but the long white cigar-shaped gauze hanging from his neck is part of that story.
Rogelio waits and watches the emergency-room doctor as she types notes into his electronic chart.
“What time did he get here?” I ask her.
“They all know to get here by 4 a.m. at the latest,” she says without looking up. This represents a second strike for Rogelio, since it’s a little after six now and the first group of patients with similar diagnoses has already been escorted to the dialysis unit upstairs. It’s very likely he won’t make it to dialysis today.
A question lurks behind all this, behind the HOUSTON cap and the blood work being processed and the catheters wrapped in cotton and the not-sick-enough smile on Rogelio’s face: Why are you here?
Answer 1: Because I was jodido—i.e. fucked. I grew up one of eight children outside Aguascalientes, my mother a factory worker, my father a drunk. I was single and poor, no job, not even close, so I paid a coyote $1,800 to help me cross the desert into Texas. I drank nothing but puddle water the whole way, but I made it all the way to Houston where my uncle gave me a job that same day. For five years I worked as a painter. All of Houston’s new developments—Pearland, Sugar Land, Cinco Ranch, you name it—I’ve painted. Condos, apartments, offices, wherever mi gerente took me. Four months ago, I was working sixty-hour weeks and sending $100 a week back home. On weekends I played soccer and hit up nightclubs. That was before I started feeling tired, before I fainted during lunch and woke up in an ambulance. The doctors told me my kidneys no longer worked, and they put this thing in my neck, told me the next time I felt sick to go to Ben Taub.
Answer 2: You’re at Ben Taub, the county hospital, because of a law named EMTALA—the Emergency Medical Treatment & Labor Act. This law was supposed to deter emergency-room staff from cherry-picking insured patients at the expense of people like you by decreeing that everyone, regardless of funding or legal status, ought to be medically stabilized before transfer or discharge. This mandate was passed without funding, meaning there’s no one to pay the hospitals for your care once the bills pile up. And they will pile up, they most certainly will, regardless of how much you think you can pay, because you have end-stage renal disease. All that stuff people pee out, like urea and salt, you can’t get rid of it. It stays in your bloodstream. We can make you feel better temporarily, which is to say, we can get your potassium level down to where you’re no longer in imminent danger, but there’s a 100 percent chance that while you’re alive you’ll be going to an emergency room on a regular basis, probably once a week. You’re here right now because that thing on your neck tells doctors that you’re unfunded. Having one is a lot better than not having one, than having one placed temporarily and then taken out once you leave the hospital, but it’s your scarlet letter: Since you look Hispanic and have no funding, it doesn’t take much to figure out you’re one of the illegals. This is why you’re here, because other hospitals have decided to let the county figure out how to take care of you.
Answer 3: Rogelio _____ (MRN 073xxxxx), a twenty-three-year-old Hispanic male with a history of recently diagnosed ESRD, presents to Ben Taub because … . In Texas, medicine is like politics: It’s all local. This is Rogelio’s first time at this hospital. Once he demonstrates he lives in Harris County, he’ll have access to a robust medical-care system, one that will give him a primary-care doctor, chemotherapy if he’s diagnosed with cancer, the right medications if he contracts HIV, etc., all at nearly no cost to him. That’s because he’s a member of this community. He is not a medical tourist, he isn’t squatting; for years he’s been working here, and so local taxpayers, through property taxes, will take care of him. If he’s undocumented, so be it—that’s the federal government’s designation. This county figured out a while back that all its denizens—the poor and undocumented included—deserve locally funded health care, which means that the state’s decision to forego Medicaid expansion won’t ruin people like Rogelio. This might sound like a refreshing blend of right- and left-wing politics, but there’s a problem: Rogelio is one of five unfunded, newly diagnosed patients with ESRD seen at this hospital every month. The majority of patients like him receive dialysis on schedule by using county dollars; others must live with cigar-shaped gauze protrusions on their necks or chests and come to the emergency room whenever they feel sick, at which point doctors must triage. Even though Rogelio is sick and feels ill and there’s therapy to help him, other people are sicker. He is simply not sick enough.
The emergency-room doctor knows it would take dramatic lab results—a potassium value highlighted in red with two exclamation points beside it—to compel her to do anything but discharge him, since headache, nausea, and fatigue aren’t life-threatening. In other hospitals, a person in Rogelio’s condition may not even be examined (or so I’ve been told by many patients).
“Can I borrow your stethoscope?” the doctor asks me.
She lifts up Rogelio’s T-shirt to reveal tape crust in the exact locations we are taught to place EKG electrodes, evidence that he has been to multiple emergency rooms before coming here.
“Lung sounds clear?” I ask.
“Clear,” the doctor says.
She hands me my stethoscope and settles in her chair. She takes a quick look at Rogelio’s lab work. “I hate this part of the job,” she says. “Tell him he needs to come back tomorrow.”
I break this news to Rogelio. As I explain how it works here at Ben Taub—patting down the corner of that bandage with the edge of my hand—I start to stumble on my words (“¿Como se dice?”) and my gringolandia accent grows all the more prominent. Finally, I ask him, “Why are you here?”
Rogelio looks at me, confused by the fact that I’m asking such an obvious question, and says, “Dialysis?”
No illness illuminates the legal, financial, and ethical difficulties of caring for the undocumented ill in this country quite like end-stage renal disease. It is an increasingly common illness in America and the aging world, the natural consequence of ignoring diseases such as diabetes and hypertension. When too much blood sugar or too high blood pressure (or, in the case of a disease like lupus, too many auto-antibodies) erodes at the delicate filtration system housed in our kidneys, we lose the ability to regulate the amount of salt and other metabolic by-products in our body. Think of the capillaries that perform this filtration as a net, a very selective one, that is capable of distinguishing between trash and bounty. The net keeps what’s precious (proteins) while allowing the trash (urea) to drift away. Diabetes and high blood pressure slowly stretch the mesh, so to speak, tugging at individual squares so that proteins start to slip through. Over time, the intricate latticework becomes a gaping hole, one unable to retain protein or filter out waste. Left unchecked long enough, the condition leads to a buildup of urea inside the brain, enough to cause incessant vomiting; salt water leaks into the lungs; with the accumulation of excess potassium, the heart’s rhythm goes dangerously out of whack. The solution is dialysis—artificial filtering—which more than 500,000 Americans receive on a scheduled basis through Medicare. When undocumented immigrants like Rogelio develop dangerous complications from ESRD, however, what happens is a far more complicated and risky process.
Rogelio is one of around 300 undocumented patients in Houston with ESRD. This might not sound like a large number when you consider the estimated 400,000 immigrants lacking papers in the greater Houston area, but it’s high enough to have changed the way the county-funded, safety-net hospitals that care for these patients are run.
The stories of how we used to care for these patients still linger in the hallways at Ben Taub. In the fall of 2000, when Dr. David Sheikh-Hamad became Chief of Renal Services, you couldn’t walk through the ER without encountering chaos. You saw two rows of stretchers facing each other, with patients separated by only a half thigh’s girth, and a busy thoroughfare of doctors in between. You heard yelling, you witnessed nudity, you smelled bile in people’s retchings and C.difficile in their stool. Among the alcoholics and orange-jumpered jailbirds and abandoned elderly, patients one expects to see at a safety-net hospital, you saw undocumented patients with ESRD. Young doctors held these patients’ chest X-rays to the fluorescent lighting to reveal fluid where there should have been air, the so-called “white out” of flooded lungs. Crinkled EKGs, a ton of them (piled on the patient, inside the chart, speared through the IV pole), showed aberrant heart rhythms, some of which, as smooth as a sine wave, portended death. Who were these patients with green skin, who, in the middle of summer, wrapped themselves in cardigans and florid quilts? Who were these people emergency-room staffers recognized and greeted with, “Back again?” Who took up so many of our stretchers? Members of the community, was how Sheikh-Hamad saw it. This recognition was the first step toward providing undocumented ESRD patients with compassionate care. The next step was trying to find a way to actually serve them.
In late 2000, 25 percent of the patients admitted to Ben Taub from the emergency room had the following characteristics: nonfunctional kidneys, deathly ill, visited ERs for the same symptoms twice every week, Latino, and undocumented. The protocol for how to deal with these patients when lab results or symptoms were severe enough to warrant emergent dialysis was to admit them into the Intensive Care Unit or medicine ward, place a temporary catheter into one of the major accessible veins—either in the neck, below the clavicle, or in the groin—dialyze three days, then discharge them. Doctors utilized this protocol regardless of whether it was the patient’s first visit or if the patient had returned after having been discharged that same week.
“There was a realization this was an absurdity,” Sheikh-Hamad says of the circumstances. Patients seemed to be returning to the ER sicker, carrying more fluid, with higher potassium levels and graver infections. He surmised that the repeated use of temporary catheters was causing irreparable damage to patients’ veins, which was why Ben Taub’s ESRD patients were having higher rates of infection and ICU care than the average ESRD patient on scheduled dialysis.
Sheikh-Hamad’s first major change as the new Chief of Renal Services was to mandate the use of Permacaths—a dialysis catheter tunneled permanently beneath the skin (the exterior wrapped in gauze in the appearance of a cigar) to avoid the damage and infection that resulted from the conventional removal and reinsertion of temporary catheters. Patients could now arrive at the emergency room when sick and not have to wait for the procedure and ICU admission that took up so much time. He noted that the efficiency of the dialysis center improved, and that more patients were better served. The change to Permacaths alone quickly reduced complications, not to mention costs.
Something still troubled Sheikh-Hamad, however. In talking with and caring for the patients in Ben Taub’s dialysis unit, he noticed that the majority of his patients, though undocumented, had been established in the community for many years. They weren’t patients who traveled to Houston when they got sick; they were people who had emigrated here for financial reasons, often overstaying a work visa, who didn’t have primary-care doctors or access to specialists. Sheikh-Hamad knew that even with Permacaths, there was still a better and cheaper and more ethical way to help these patients, simply by scheduling their dialysis sessions three times a week, the way most Americans with ESRD receive treatment. The problem was figuring out who would pay for it.
Often in medicine, what is morally costly ends up being financially exorbitant. Sheikh-Hamad decided that the most compelling argument for changing the system didn’t rely on ethics alone but also on economics. He began studying two different groups of patients who had received care at Ben Taub from July 2000 to February 2002—one that received dialysis emergently, another that received scheduled treatments. The latter group, consisting of twenty-two patients, had been grandfathered in to scheduled dialysis by administrators after a 1997 change in policy that directed doctors to dialyze any newly diagnosed and unfunded patient with ESRD only emergently. (Previous to this, all patients received scheduled dialysis.) He collected data on both groups: How many times in the past year had the patients visited the ER? How often had the patients been admitted to the hospital or ICU? How much had the care of these patients cost?
In a 2007 issue of Texas Medicine, Sheikh-Hamad published the results of his study in a paper demonstrating that the protocol of temporary fixes through emergent dialysis cost more than $280,000 per patient, a third of which was spent on hospital and emergency-room costs. Chronic-care patients, on the other hand—those on thrice-weekly scheduled dialysis—only cost $77,000 a year, nearly a four-fold reduction in costs. Over an eight-month period, patients receiving emergent dialysis visited the emergency room, on average, twenty-six times, while emergency-room visits were reduced to only once (over an eighteen-month period, for all patients) among those receiving dialysis on schedule. Sheikh-Hamad’s study showed patients on emergent dialysis spent many more days in the hospital as admitted patients (135 days versus five), required many more blood transfusions (twenty-five versus two), and were twelve times more likely to be admitted to the hospital—four times as often to the ICU—as patients on scheduled dialysis. Clearly, there was no economic justification for emergent dialysis.
For Sheikh-Hamad, the time had come to change the way unfunded ESRD patients were cared for at Ben Taub and other Houston hospitals. He had lobbied since 2001 for the creation of a new dialysis center where all of the ESRD patients flooding emergency rooms could receive cheaper and more efficient care. In late 2007, armed with a study that proved his hypothesis correct, his pleas gained momentum with hospital administrators. His economic argument was sound; whether conservative legislators in Houston would agree to fund the care of undocumented immigrants was another matter.
Because We Never Ask That Question
In a November 1962 issue of Life magazine, Shana Alexander detailed how a “miraculous machine” saved the life of a man named John Myers by serving as an artificial kidney. The article, “They Decide Who Lives, Who Dies: Medical Miracle and Moral Burden,” not only described the then-novel therapy of dialysis and the way the dialysis machine improved Myers’s life (his ailments prior to starting dialysis were almost identical to Rogelio’s current symptoms), it also spurred a question about the price of medical innovation that now seems intrinsic to modern medicine: How much is society willing to pay for a human life? After a decade of public debate, Congress decided that the lives of those with ESRD were worth quite a bit. In 1972, the End Stage Renal Disease Program authorized the payment of chronic treatments for ESRD (including transplantation) under Medicare, extending this benefit to the 10,000 Americans living with the illness at the time. Many pieces of legislation have honed this entitlement, including, most recently, the American Taxpayer Relief Act of 2012. But the process of how chronic dialysis is initiated, continued, and paid for remains deeply connected to Medicare, even for the 10 percent of Americans with ESRD not covered by Medicare.
Today, American citizens with ESRD receive Medicare benefits if they’ve paid enough into the system, via deductions from paychecks, or if they’ve been disabled long enough. (Of the $549 billion spent by Medicare in 2011, $34 billion was spent on ESRD on more than 500,000 patients.) Americans with ESRD who don’t qualify for Medicare often find their scheduled dialysis paid for by Medicaid, which is partially funded through the federal government and administered by a patient’s home state. Other avenues available to US citizens who don’t have enough work credits for Medicare and who earn too much income to qualify for Medicaid are Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI), both of which confer coverage based on the disabilities incurred by ESRD. Obtaining the funding for this type of treatment can take as long as five months, during which time patients receive emergent dialysis, with the crucial distinction that eventually, if they survive, they will receive scheduled dialysis, paid for in part by federal funds.
According to various studies, the undocumented use far less of our health-care resources than their documented counterparts, ESRD or not. Much of this is due to how expensive those services are. With the exception of Emergency Medicaid—which, depending on a state’s eligibility criteria, may cover the cost of emergency care—the use of federal health-program dollars to treat the undocumented is expressly forbidden. Legislation has reinforced this restriction time and again—the Personal Responsibility and Work Opportunity Reconciliation Act, the Illegal Immigration Reform and Immigrant Responsibility Act (both passed in 1996), and even the Affordable Care Act of 2010 have all made clear that the federal government does not intend to use tax dollars to help pay for the medical care of those who have entered this country without a visa. The majority of undocumented immigrants are Latino and poor, with jobs that rarely provide them with health insurance. Very few see primary-care doctors. When they seek nonurgent medical attention, they often do so through private doctors who see them for cash, some of whom take advantage of this arrangement by ordering excessive procedures—a complaint I’ve heard from many of my patients. While the Affordable Care Act prohibits the undocumented from purchasing insurance from state exchanges, no other legislation expressly forbids the purchase of health insurance otherwise. The majority of undocumented immigrants haven’t done so, however, because insurance is prohibitively expensive. The result is that the care of nearly 11 million people in America has fallen to emergency rooms across the country. Hospitals, mandated by EMTALA to provide emergent care to anyone regardless of citizenship or ability to pay, often provide the undocumented with unreimbursed care, the cost of which is then calculated into fees for paying patients. In the end, communities pay for the care of the undocumented in the form of increased costs.
In Houston, Harris Health, a locally funded health-care system, addresses this problem by using taxes to subsidize the care of undocumented patients. Chemotherapy, Highly Active Anti-Retroviral Therapy (HAART) for the treatment of HIV/AIDS, expensive but study-proven cardiac medications for the treatment of heart disease—all of these therapies are available to Harris County’s undocumented immigrants, and at very little cost to them (as well as to the taxpayer when compared to the costs of these therapies elsewhere). What’s more, the quality of the care is generally rated as very good, and in some cases excellent: Ben Taub, Harris Health’s flagship hospital, recently earned the highest mark in the country for heart-attack care based on door-to-balloon time, a measure tracked by the Center for Medicare & Medicaid.
How is it possible that undocumented immigrants in Houston receive better care for heart attacks at Ben Taub than Houstonians who visit world-class hospitals like the Texas Heart Institute, where doctors developed the artificial heart?
To answer this question, one must first look at Harris Health’s roots. In the early 1960s, charity care for Houston’s indigent took place at Jefferson Davis Hospital, which received funding from both Harris County and the city of Houston. At the time, neither wanted to pay for a hospital that served mostly African Americans; both considered it the financial responsibility of the other. Thus, a cut in funding by the county resulted in the city reducing its own funding as well. As a result, the hospital deteriorated. What were already decrepit conditions took on deplorable proportions, as detailed in Jan de Hartog’s 1964 investigation The Hospital:
The smell of poverty cannot be described, although it is the same all over the world. I had smelled it in India, in Paris, in prison camps during the war, but most unforgettably when the first inmates of the Nazi concentration camps came home after their liberation … . I had seen well-intentioned humanitarian officers start out by trying to treat them as unfortunate human beings. Before the day was past, they were yelling at them, herding them, pushing their milling, mindless mass around as cowboys push a herd of cattle.
De Hartog, a Dutch novelist and playwright whose works eventually earned him a Nobel Prize nomination in 1972, wrote The Hospital in reaction to the inhumane conditions he encountered as a volunteer orderly at Jefferson Davis. De Hartog believed that the lack of funding for Jefferson Davis was only one of many problems, and not necessarily its most crippling. Worse than a lack of resources, de Hartog observed, was the fact that the doctors at Jefferson Davis had assumed a futility to their efforts, a condition he calls the “disaster syndrome.” It was a term he first heard while commanding a hospital ship that brought medical care and supplies to remote Dutch villages hit hard by massive flooding in 1953. First responders to the disaster—usually local doctors—would demonstrate contempt toward well-supplied reinforcements, insisting that they’d “made the best of it.” As the doctor aboard de Hartog’s ship described it, disaster syndrome manifests with futility, so that “normal reactions of protest or outrage in the face of intolerable conditions are absent and the overriding reaction is not to correct those conditions but to accept them as permanent and to circumvent them.”
I know disaster syndrome all too well, having experienced it while volunteering at a hospital in Haiti following the 2010 earthquake. After two weeks of working with very limited resources, I became accustomed to making clinical decisions based on examinations alone, without any technology. One afternoon, a man was brought to our makeshift emergency room—carried spread-eagle, with each limb hoisted by a different person—after sustaining a cinder block to the face. We asked him to hold up two fingers, shouting at him and digging our knuckles into his sternum to elicit a response. When he finally held two fingers up, the volunteer neurosurgeon declared, “Circuit’s intact, we don’t need a CatScan.” In his mind, the CatScan wasn’t worth the money we’d have to try to collect from the patient’s family, who likely didn’t have it, thus wasting precious administrative resources. Back at Ben Taub after my two weeks in Haiti, I begrudged anything more than the minimal procedure because I was still in the mode of accepting limited resources as a greater factor impacting a patient’s life, rather than the care I could administer.
Publication of The Hospital in 1964 sparked enough outrage and debate in Houston that the head of the County Commissioners’ Court, County Judge Bill Elliott, decided to verify the deplorable conditions de Hartog so vividly described (one nurse reported that she’d seen a cockroach working its way into the tracheal tube of a comatose child). Following de Hartog’s example, Elliott also covertly enrolled as an orderly at Jefferson Davis, and discovered that the author’s descriptions were indeed accurate. To rectify this public shame, Elliott proposed the formation of a hospital district, a governmental entity separate from the city and county that derived its funding through property taxes. Proponents of this measure reasoned that a hospital district wouldn’t be as susceptible to political wars and would accrue a reliable source of revenue. Opponents considered additional funding toward the charity hospital to be a wasteful use of public money.
After considerable public debate, a referendum on the formation of the hospital district was called for in January 1965. The measure was widely defeated. Another election was held later that year in November after de Hartog’s book grabbed the attention of the foreign press, which ran such headlines as “Houston’s Zoo Air Conditioned, Charity Hospitals Are Not.” With the backing of world-renowned surgeon Michael E. DeBakey and the Harris County Medical Society (as well as some key financial leaders), the referendum finally passed and the Harris County Hospital District was created. It assumed control of Jefferson Davis Hospital as well as a newly constructed hospital located in the Texas Medical Center named Ben Taub. As Houston’s population grew over the next forty years, so did the hospital district, adding new primary-care clinics throughout the city, a new hospital, and innovations unseen by the rest of the US, including, in 1989, the nation’s first freestanding HIV/AIDS treatment facility. That same year, Jefferson Davis Hospital was closed, and LBJ Hospital was constructed to take its place. Thus, with his excoriation of Jefferson Davis, de Hartog had planted a seed of compassion for Houston’s indigent.
Ben Taub’s chief of staff, Dr. Kenneth Mattox, recalls firsthand the awful conditions at Jefferson Davis Hospital. Some of Mattox’s first experiences with trauma patients took place there. He keeps a copy of The Hospital on his office bookshelf, alongside such titles as Great Ideas In the History of Surgery and A Treatise On the Scurvy. Mattox is what you might call a quintessential old-school surgeon, one who never hurries down the hallways, who utilizes scrubs exclusively on call nights (never in public), whose deep voice and tall frame and reputation for having seen everything instills awe to the point of fear in hospital personnel.
As a medical student on a surgical rotation at Ben Taub, I once took call with Mattox. The scope of my job on the surgical team was to carry bandage supplies for rewrapping wounds, and to collect Tmaxes, the highest temperature recorded on patients waiting for or having undergone an operation. After rounds, with every pocket on my lab coat disemboweled of the Kerlix gauze I’d stuffed inside, I changed out of my scrubs and into a makeshift suit and attended the conference made legendary by Mattox—M&M: Morbidity and Mortality—wherein complications from the previous week’s surgeries were openly discussed. A jacket and tie was de rigueur for his lectures, since he demanded all attendees dress professionally and respectfully. Residents who so assuredly directed me to place my finger in a patient’s rectum to check for blood—“¿Por qué?” exclaimed the man after I explained what was about to happen—shrunk before Mattox at these lectures, because he called on all of them to explain their decision-making and defend their reasoning before the entire surgical department.
For all his distinctions—Distinguished Service Professor at Baylor College of Medicine, past president of the American Association for the Surgery of Trauma, consultant to the Center for Biologic Evaluation and Research of the FDA, Surgeon-in-Chief and Chief of Staff for more than twenty-four years—Mattox continues to work at Ben Taub because of his commitment to the hospital’s mission of providing the best possible care to Houston’s indigent population. In his opinion, the hospital-district model that addresses local health-care problems by using local taxes—what he calls “the purest form of medicine”—hasn’t received enough public attention.
When talking about health care, Mattox, like many Texans, speaks unabashedly about his disdain for government regulations and welfare systems he feels incentivize the poor not to work. It’s easy to dismiss him as an ideologue—“I don’t want to take care of somebody that is indigent who is capable of working and making their own way”—and yet Mattox continues to push for this group’s equal treatment at Ben Taub and throughout Houston. In 2001, then-Attorney General John Cornyn wrote an opinion regarding the provision of nonemergency services to the undocumented, stating that federal law prohibited such a practice. He added that hospitals found to be in violation could consequently find themselves stripped of federal aid. When Harris County’s district attorney investigated the matter, to see if the administrators and doctors at Ben Taub were breaking the law, the hospital district’s board of managers expressed concern to Mattox about treating the undocumented in any context outside of the emergency room. “If I need to be reported for my clinical care, report me,” Mattox told the board of managers. “But spell my name right.”
Nobody went to jail. A year later, Cornyn, while running for US Senate, contradicted his opinion at one of the hospital district’s community clinics: “It’s only humane and more cost-effective to provide preventive care in clinics like this than it would be to just have [undocumented immigrants] clog emergency rooms after they’ve gotten a lot sicker and a lot more expensive to treat.”
After Sheikh-Hamad published his article on the cost-effectiveness of scheduled versus emergent dialysis, he and Mattox approached Houston’s mayor as well as Harris County judge Ed Emmett and the Rotary Club with an ambitious proposal: a health center where undocumented immigrants would receive scheduled dialysis just like everybody else. Sheikh-Hamad’s study, coupled with Mattox’s leadership, helped push the Riverside Dialysis Center project through the hospital district’s bureaucracy. The center opened in 2008. Today, thanks to Sheikh-Hamad’s efforts, 60 percent of patients like Rogelio—unfunded and undocumented with ESRD—don’t have to visit the emergency room to receive dialysis. Instead, they visit Riverside, where patients—some reading, some sleeping—are organized in rows of reclining chairs, amid the mechanical hum of blood filters. Here, public-health posters explain the hierarchy of venous access for dialysis in Spanish. Here, there’s a vinegar scent to the air and a surfeit of fleece throws. Here, dialysis is provided thrice-weekly to patients unfunded by Medicare or Medicaid. For these patients, the vast majority of whom are undocumented, the previous life of visiting emergency rooms once a week and hoping the potassium level is high enough is nothing more than an old nightmare.
“I planned to shoot myself,” a man I’ll call Alex says of his old life as an emergent-dialysis patient. He tells me his story while reclining at a station, his blood circulating through a dialysis machine. He describes how, as a young man in Mexico, he worked as a professional wrestler known as the Angel of Silence. So impressive were his dropkicks and leaps off the top ropes that the Angel of Silence had many fans, including a woman from San Antonio who’d seen him on his tour of the US, and who eventually courted him in his hometown of Guadalajara. The two were married, and Alex moved to Texas with a provisional visa. Due to legal troubles—which Alex attributed to alcohol and fighting—his visa was suspended. But by then he had established a life in Texas, so Alex decided to stay in the US without a visa. This disqualified him from obtaining coverage through Medicare or Medicaid when he developed ESRD twenty years later.
For four years, Alex visited Ben Taub’s emergency room once or twice weekly for dialysis, typically arriving at the triage nurse’s desk by 3 a.m. after taking multiple buses. His many hospital charts describe a slew of complications, including the amputation of both legs below the knee—the right in 2004, the left in 2007—in order to ward off sepsis (nobody knows for sure, but it’s likely that the use of temporary catheters contributed to Alex losing his legs). His medical problems became so dangerous and costly that administrators finally decided to enlist him at Riverside. For the last five years, Alex has received scheduled dialysis. “Here my life has started differently,” he says. “I realize I haven’t lost my brain.”
If Rogelio’s visit to the ER provides a glimpse into the current state of the medical care of the undocumented in Texas, then perhaps Alex’s visit to Riverside tells us something about how the local health-care system in Houston has taken enormous strides in caring for this population. Alex’s body bears the marks of the institutional changes that have occurred over the past fifteen years: His amputation scars tell the frightening story of life as an emergent dialysis patient, and the fistula in his arm (the surgical union of vein and artery beneath the skin, considered the safest and best access method for hemodialysis), shows how safe, cost-effective, and ethical care can be provided to undocumented immigrants when health-care leaders recognize these patients as members of the community.
The affordability of this care relies on the hospital district’s fee structure, which determines co-payments on a sliding scale: How much you earn determines how much you pay. About 40 percent of financial assistance is generated through property taxes. Qualification for this support is based on one requirement: that the patient reside within Harris County. The hospital district examines a slew of verifications to determine if someone actually lives within county lines-—including IDs (a passport or an employee job badge or a student ID), an address within Harris County (as listed on a voter card or a utility bill, a check stub or lease agreement), and gross income over the last thirty days (which could include a Social Security Award Letter). One bit of information that is not used to determine whether a person is eligible to receive chronic care through this health-care system is a green card.
“We never ask that question,” * Mattox says with a wry smile and peering eyes, as if he’s shown the federal government a thing or two about providing compassionate care. He may very well have, since Ben Taub provides such care without adding levels of bureaucracy or writing new laws or levying new taxes—just a few of the reasons why many people despise a national health-care plan. For Mattox, this amalgamation of a conservative ideology—all government is local—with the left’s altruism is, in many ways, the future of medicine.
What about Medicaid, then? Former governor Rick Perry’s infamous decision not to expand the program in 2012 caused much consternation among health-care promoters in Texas. This decision not only foregoes an estimated $60 billion in government money by 2022 ($65.6 billion of lost federal funding at a $5.6 billion cost to the state), it also means Texas cannot set up state marketplaces for health insurance, thereby leaving currently uninsured Texans to use only healthcare.gov or not to follow federal law as outlined by the Affordable Care Act. Would this not mean less money to take care of undocumented immigrants and therefore worse care?
Mattox goes through some napkin math with me: $1.3 billion divided by 311,000 unique patients in the system equals, at most, $4,500 per patient, compared to $8,900 per capita spent nationally. “If we augment our revenue,” he says—by utilizing a two-cent sales tax, for example—“we could take care of Houston’s entire population, including the undocumented.”
Since hospitals in Texas are projected to lose $34.3 billion over the next ten years without the Medicaid expansion, it would seem that administrators at Ben Taub might condemn Perry’s and the Texas legislature’s decision. Some administrators, however, including Mattox, are wary of the expansion. They believe that Medicaid does nothing to curb the high cost of health care and might even encourage unnecessary hospital expenses (one study showed that expansion of Medicaid in Oregon resulted in more ER visits). They note that while Medicaid’s costs have increased 445 percent from 1990 to 2010, its enrollment has increased only 135 percent, and that increased funding doesn’t necessarily guarantee patients will find doctors or caretakers outside of emergency conditions, since only three out of every ten physicians in Texas currently accept Medicaid. Proponents of expansion dispute this last point, citing new data from the Texas Medical Association that places that number at six out of ten doctors. They also argue that increased federal funds can close the “coverage gap” that leaves so many low-income Texans without access to affordable health care.
In the debate over how best to care for the nation’s uninsured, the core question is whether policy makers should plug this group into a system driven by excessive health-care consumption or if efforts should be honed toward providing these patients better health-care access. In Houston, undocumented patients whose access to health care is generally limited to the emergency room obtain chronic care through a system largely funded locally. Is this something particular to Houston, home of the world’s largest medical center, or is this idea—that local governments can buy into the health care of their populations—something that can be replicated nationally?
No one knows. Surprisingly, no detailed economic studies of the hospital district have been conducted. What is known, however, is something any doctor working at Ben Taub can tell you, which is that, as far as the medical care of immigrants is concerned, the line between the United States and Mexico isn’t nearly as important as the line between Harris County and its neighbors.
The Burden of Maps
The legend you heard was that patients arrived with hand-drawn maps, our hospital marked like treasure. The large African woman that says “Yes, doctor” to everything you say (metastatic breast cancer); the boy with the black curly hair and style—red Converse All-Stars, Judas Priest T-shirt—that screams Mexico City (acute lymphocytic leukemia); the grandmother with the sari snagged in her stretcher’s guardrails (chest pain, probable bypass): These are the patients Ben Taub’s doctors often fear, patients sick enough to be helped but who have come here legally—which is to say, with a travel visa, an inherent admission that a patient is merely passing through. This automatically disqualifies patients—even those with ESRD—from receiving financial assistance or appointments with specialists because of the suspicion that they are guilty of what’s known as medical squatting—“when people try to ship grandma from Nigeria,” is how one of the hematologists describes it. “I’m a taxpayer in this community. We try hard to conserve the resources we have.”
Another map demonstrates why Houstonians have much more work ahead if they aim to provide compassionate care to all their fellow citizens. Included in a recent Texas Medicine article by Dr. Rajeev Raghavan, a nephrologist at Ben Taub who has devoted much of his academic career to the question of who pays for undocumented immigrants with ESRD, is a map of the state depicting a wide disparity in the provision of scheduled dialysis. While Dallas and El Paso still require 100 percent of their undocumented ESRD patients to visit the emergency room for dialysis (and, in the case of El Paso, still utilize temporary catheters), San Antonio affords scheduled dialysis to 100 percent of its population. Houston hovers in the middle of this map, its emergent number at 40 percent. What this means is that not every unfunded patient with ESRD receives treatment at Riverside; some, like Rogelio, must continue to visit the ER.
“That’s a societal decision,” says Mattox about the limited number of spots—130—available at Riverside. “Society can say that if someone has chronic renal failure and doesn’t live here, you’re not gonna dialyze them.”
Progress is one thing; consistent progress is something else altogether. Every increment to the scheduled dialysis program requires more statistics, more meetings, more pleas for funding to help cover the cost of nurses, chairs, dialysis fluid, etc. The system is overloaded: At last count, Houston has 300 undocumented ESRD patients, the most in the state and double that of San Antonio and Dallas. What this amounts to is that undocumented patients newly diagnosed with ESRD don’t get to experience the benefits of major steps taken here with regard to their care. Instead they endure the county’s old system of visiting the emergency room once or twice a week, hoping someone will eventually leave a dialysis chair open.
“The fear of the board of managers,” Mattox says, “is that if we do too good a job and are too compassionate, word will spread across the United States, ‘Go to Houston for your compassionate care.’”
After telling me this, Mattox shows me an e-mail he received that very morning from Thailand, asking him if he might accept a rich client with cancer to receive treatment at Ben Taub. The patient is wealthy enough to visit a number of hospitals, but word has spread about the compassionate and excellent treatment at Ben Taub. “I told him no,” says Mattox. “I have a responsibility to have a bed for these people in this county who don’t have a choice.”
Right now, Rogelio has no choice. With no spots open at Riverside, there’s not much we can offer him. As the sunlight starts to slip in and the night shift rotates off and the calls on the overheads gain urgency—“Stroke alert, shock room hallway”—he sits in the waiting room with a quizzical look on his face. The more I try to explain how things work here, the more confused he appears. When he asks me if he’s in the right place, I don’t hesitate. “Sí,” I tell him, and a streak of disappointment runs through me. And then he sideswipes me with another question. “¿Estoy bien?” he asks. Am I in danger?
“Your medical state is such that you’re not in danger of dying imminently, but we want you to come back to the ER tomorrow,” I tell him.
As he heads for the door, it hits me: The best way for Rogelio to understand might be to see it. He can visit Riverside and sit among people like him—undocumented, poor, sick—receiving dialysis on schedule, paid for by his fellow Houstonians. He can talk with Alex, the Angel of Silence. Alex no longer wears a wrestler’s outfit, but he receives dialysis in a Cruz Azul soccer uniform. He can show Rogelio his legs, the fistula in his arm, his bare neck. I used to have one of those, Alex might tell him, pointing at Rogelio’s gauze-wrapped catheter, but I made it here.