These numbers, Merle argues, are out of step with UTMB’s status as a public hospital. Nationwide, public hospitals—which not only are not-for-profit but also receive significant funding from state and federal governments—spent about 13 percent of revenue on unfunded care in 2012, on average. Merle’s data suggests that the UTMB numbers were much more in line with averages in for-profit hospitals.*
Because charity care was already being cut before the storm, some felt that the hurricane provided the perfect screen for the university to fully enact a plan it had already begun. Others were more sympathetic to the university: It had undergone a costly evacuation for Hurricane Rita in 2005, withstood state budget cuts, and then been badly flooded during Ike. It was a miracle that UTMB was still running at all.
But politics aside, Susan could not fathom the logic of the form letter. It used her name. Because of that, her patients thought that she had chosen to abandon them. “Why won’t you see me anymore?” they would ask—patients Susan loved. People whose bodies she had opened with her scalpel, and people with growing cancers who desperately needed the surgery she could offer. She would try to explain that it wasn’t her, it wasn’t her choice at all. But on some level it didn’t matter: They were angry, and she was the person put before them. Her name was on the letter.
The second issue with the form letter was how neatly it blamed the abandonment of the poor patients on “the devastation caused by Hurricane Ike.” On the mainland clinics, Susan noted the orderly procession of UTMB’s paying patients in and out of operating rooms. The devastation caused by Hurricane Ike had not prevented UTMB from offering care to them.
The UTMB providers who spoke up about their charity patients were likely to be reminded of the RIF, and told that the cuts to charity care helped ensure that the institution could keep paying employees while the hospital recovered. And so the checks that came in felt not only unearned but also tainted, as if they came at the cost of patients’ lives. Even so, UTMB providers managed to push the institution to fund one last visit with patients who would no longer be seen. In those final visits, Susan would do everything she could for her patients. She would tend to their wounds and their tumors as far as she could in her office. She would clean their tracheostomies—the tubes that went into some of their necks to help them breathe around a tumor—and write prescriptions for medications to control their pain. Her nurse would call around to area hospitals, trying to find a placement. But the limiting factors were chemotherapy, surgery, and radiation. Her patients needed these things to survive, and she could no longer offer them.
Who is a surgeon without her operating room? What does a good doctor do, when the institution she works for compels her to abandon patients who obviously need her help?
SUSAN BEGAN TO FIND her own answers to these questions by driving up the coast. Her Galveston patients were scattered, but many lived farther up the coast in areas that had not been flooded by Ike. These patients, too, had gotten the form letter. Susan often couldn’t reach them by telephone, so in the weeks after Hurricane Ike, she began to climb into her little Volkswagen and drive out to find them. She was unaccustomed to all the free time Ike had granted her, and she began to fill it with the practice of medicine.
The weather was beautiful then—sunny and cool, the most perfect October you could dream of after your town was destroyed. It felt almost like a vacation for a while, leaving the wreckage of Galveston behind and driving through the seaside towns, listening to Bach’s Goldberg Variations or his Sonatas for Viola da Gamba and Harpsichord. These towns were startlingly intact compared with Galveston. The oak trees were alive, the restaurants were open, people had lawn chairs and swing sets in their yards. Susan would drive to the nearest point she could find listed as her patient’s address. If she couldn’t find the house, she would start asking around at corner stores and churches, until someone knew where her patient lived. Susan’s patients spanned the width of American poverty: some were in houses, and some were in trailers, and some were in garage apartments with dirt floors, where the electricity came from an extension cord and running water could be an issue. They welcomed her in, and she began to learn that every little house, no matter how humble, can feel just like home. Susan would duck through the low door of a trailer, and someone would offer her a cup of tap water. The sick bed often took up most of the space inside, and so afterward she would be invited to sit in the folding chairs out front. She was conscious of her own comparative wealth, and grateful for her modest car that was not too shabby to seem doctorly, but still wouldn’t stick out in any neighborhood.
Oddly, Susan’s patients did not seem surprised to see her. It was as if they had been sitting at the edge of the bed, waiting for her to walk in. There were people at every stage of treatment: people who had just been diagnosed, to whom, weeks before, Susan had explained that they had a great chance of surviving. There were people who were bedridden, with feeding tubes in their stomachs and tracheostomies in their throats. And there were those in between—some who had gotten surgery already, and some who had not. “So what are we going to do, doc?” they would ask her. “What’s our plan?”
That is when the easy autumn feeling grew thin and shaky, because the truth is that Susan did not know exactly what to do. Some of her patients were convinced that the interruption in care was a temporary thing, and that UTMB would take them back as soon as it could. Others had already begun to seek care elsewhere. Still others were too sick to do anything at all. She had to tell them that it was true: she would no longer be able to treat their cancer.
Susan’s patients would ask her what would happen to them if they didn’t get care, and this was even worse. Head-and-neck cancer is often inexorable. If untreated, it chokes you to death, or it grows back into your brain, or it erodes into a major artery so you suddenly bleed to death. You can hemorrhage out of your mouth and nose and drown in your own blood unless there is a doctor right at hand to put in a tube that will block the blood from flowing down into the lungs. Susan began forcing herself to tell the truth—not all those details, but the truth. “You’ll die,” she would say. “You’ll die because of this. I know I said you had a 70 percent chance of being alive five years from now, but that was with treatment. Without treatment, your mortality rate within a year will be 100 percent.”
This is not an easy thing to say, and sometimes she failed. She would dance around the issue, talking about county indigent care plans and applications to Medicaid, even when she knew those plans weren’t going to work. The conversations were sometimes circuitous. So then she tried to force herself to say it very strongly—“You will die”—and that was awful also. It was too much. Sometimes the conversations were arduous, two-hour-long affairs, with the patients saying, “Tell me again how it is that I’m not going to get care.” And so she would try to repeat it. A time or two, she arrived at a patient’s house and sat silently in her car for a few minutes, then turned around and drove back to Galveston, too heartsick to have the conversation again.
Still, she felt that these conversations had to happen face-to-face. She could not fathom the form letter, the innocuous language that in fact meant bleeding, suffocation, death. Her patients deserved at the very least to hear it in person, to have it made plain. So she returned to their homes and to these impossible conversations.
Susan was in unfamiliar territory, beyond the guidelines of how physicians discuss death. As a surgeon, she had been trained to confront bad diagnoses. She knew how to tell a patient that treatment was not working, and how to tell a patient that her disease could not be cured. Many of her patients had died before, because cancer patients often do. But this felt different; she could not blame the cancer itself, the disease that humbles all of medicine. The situation felt unnatural and she wasn’t sure who to blame. The insurance system? The state? The hurricane? As an employee on the UTMB payroll, Susan felt implicated in the withdrawal of care, and so at times she blamed herself. She felt like a useless novelty: a surgeon who
could not operate, a cancer doctor who could not cure.
She had some idea, however, that she could stand by her patients. She could go to their houses, and lay on her hands, and comfort them. She could clean their wounds, change their tubes, write prescriptions for their pain. Each encounter began with the washing of hands, and sometimes to wash her hands Susan had to begin by washing the dishes in the sink and then putting them away, because her patients were alone and sick and things like dishes had been forgotten. So she would do that, the dishes and her hands, and then begin. As strange as this was, it was also deeply familiar, the same old rituals of doctoring acted out in a trailer park outside Beaumont: clean hands, vital signs, history taking, care. Sometimes a neighbor or a neighbor’s kid would be sick, and Susan would see them, too.
Yet some of her patients did not want this. They did not want her comfort, or the laying on of hands, or a doctor who follows the ethical imperative of patient nonabandonment. They wanted surgery, radiation, chemotherapy, and cure. They wanted to live.
Susan understood. Maybe there was even relief when they got angry, because partly she wanted to be punished for her sins: her job, her health, her full paycheck at a time when so few patients were getting operations that she could drive up the coast on her days off. She wondered if the whole thing—the laying on of hands, the comfort, the nonabandonment—was just a complicated way of soothing her own guilt.
And so she tried to fix things, to work within the system. But understanding the system was like grasping at smoke. You would see for a moment a way to answer the questions—Why are my patients dying? What do we do?—and then it would disappear. There had been a time, before the storm, when Susan’s work on the committee that followed charity care in the hospital had felt clear and right: obviously, there were limited funds, but the goal was to get as much care as possible to as many patients as they could.
After the storm it was not like that. Everything became contingent, and every plan unraveled. The committee didn’t meet for a month. Then the membership changed, and finally after a long time of Susan asking questions that nobody could or would answer, the committee was dissolved. When it was reformed, Susan was not on it. And by that time she was too heartbroken to fight it. She did not believe that UTMB was trying to offer care to the indigent.†She was exhausted.
Most of Susan’s friends and mentors counseled her to step away. The situation, they said, was untenable. Some told her to focus instead on public health—preventing cancer by preventing smoking—or laboratory research, or policy change. They said she would burn out. They said that a surgeon’s duty ends when she can no longer do surgery. They said she should leave. There were plenty of opportunities to leave, as other academic medical centers were actively recruiting UTMB doctors. Many good people left UTMB, but Susan couldn’t. She kept returning to the particular, those particular people in whose bodies the policy and public health and personal story seemed to crystalize, and who were dying in makeshift houses up and down the Texas coast.
The whole experience has not made her a better person, she thinks. Rather, it has made her feel heavier, weighed down by the constant presence of suffering that she cannot ameliorate, and which comes from sources that feel artificial. As complicated and mysterious as cancer is, she understands the place it holds in life. Cancer is tangible, vicious, and real; bureaucracy is otherwise. It is deliberately designed to obfuscate, to be the smoke in the air that nobody can grasp.
IT WAS JANUARY when Susan’s patients began to die.
There is a dividing line in head-and-neck cancer, between people who have tracheostomies and people who don’t. The trach patients have a protected airway, a tube that goes from their throat down to their lungs. But the patients without trachs do not, so when the cancer closes up their throat, they begin to starve and suffocate. They move more and more slowly, breathe less and less. Then one day they get laryngitis or a cold, and their airway collapses suddenly, and they die, as did several of Susan’s patients. Their families would say they had died in their sleep, and it was a result of airway collapse.
The sound that breath makes when a patient’s airway is collapsing is called “stridor”—a harsh, wheezing sound. If these patients could have gotten to an ER with an on-call surgeon in that critical moment when they had stridor, they would have been given an emergency tracheostomy. But for a time, the ER in Galveston was closed and Beaumont or Houston hospitals were far away—a life-flight away. In rural Texas, as Susan would point out, the barriers to care often begin well before the hospital.
Patients with trachs died in other ways. Their cancer metastasized to their livers or lungs, or extended directly back into their skulls and killed them. One patient’s tumor eroded into his carotid artery, and he bled out massively into his own body and died. Others died of what Susan calls the “cancer dwindles”—they grew thinner and thinner as the cancer demanded more and more of the energy that their body could produce, and finally they were bedridden and then they died. In an awful way, it was educational for Susan to see all this, what we refer to as the “natural history” of the disease that she had been trained to cure.
Susan did not attend their funerals. She never has been one for patient funerals, in part because she feels that as the doctor she draws too much attention at them. Family members come up to thank her, when they should be able to simply be immersed in their own grief.
She also feels that her patients cross some kind of bright line in dying, between being under her care and being under the care of their families, or God. She is not religious. But she sees all her patients who have died very clearly; she imagines them all side by side in a high pew in the Government Street Presbyterian Church in Mobile, Alabama, looking down. The upholstery there is gold and velvety, and the light makes golden dust motes. Susan’s patients are looking down and she can see their faces, and they have something to teach her. Though in these cases, as often, she is not yet sure what the lesson is.
* These numbers come from the Galveston County Free Care Monitoring Project’s independent review of UTMB financial reports. They are available online as “2012 Update: Achieving Reasonable Public Disclosure of Available Free and Reduced Cost Health Care in Galveston County, Texas,” accessed May 17, 2016, http://gulfcoastinterfaith.org/yahoo_site_admin/assets/docs/2012_Update_Clearing_the_Fog.185150259.pdf.
† In 2014, UTMB president David Callender finally stated publicly that charity was no longer part of UTMB’s “core mission.”
CHAPTER 6
THE SUMMER AFTER THAT JANUARY WHEN SUSAN’S PATIENTS began to die, I moved to Galveston. I spent the summer taking PhD courses at the Institute for the Medical Humanities and waiting for August, when medical school would begin. All summer, I heard stories about St. Vincent’s. Margaret was a student director there. She and her friends told St. Vincent’s stories at the cookouts and potlucks that populate the summertimes of medical school. I heard about a patient dying from cancer of the liver who couldn’t get on the transplant list—presumably because he had once used heroin. But could it actually be because he was uninsured? And a woman diagnosed with schizophrenia who refused all medications and kept getting arrested for hollering in the street. And a medical student who was trying to treat a circle of men who kept reinfecting one another with syphilis. “I need to just get all ten of them into clinic at once,” he joked, “so we can make sure they’re all treated simultaneously.”
Who were these schizophrenic, syphilitic, cancerous uninsured heroin-injecting criminals in my backyard? They sounded like strangers to me.
One Thursday afternoon, about a month before I was set to start medical school classes, Margaret loaned me a white coat and took me to the clinic. We drove across the north side of the island, away from UTMB and past downtown to where St. Vincent’s House stands among a swath of devastated blocks and empty lots. Amid the blankness of the north side after Ike, the House was buzzing with activity. Cars lined the street out front, and more people were walking or riding be
at-up bicycles toward the clinic. I could hear music playing on the outdoor speakers. Unlike anything around it, the House had shrubbery: green bushes planted along the outside wall. In the years to come, St. Vincent’s would get even brighter: murals would spread from the main building to the basketball court to the sidewalk out front. A Hope Mile with exercise equipment would be dedicated for walking, and a community garden would spring up on the grounds.
Margaret shepherded me up the outdoor stairs to the second story of the House. We opened the door and stepped right into the clinic waiting room, where a dozen people glanced up to see us enter. There they were: the uninsured.
The uninsured were reading magazines, glancing down at phones, or talking with relatives who had come along to pass the minutes (or hours) of waiting to see a doctor. A little girl slept with her head in her mother’s lap, and one couple nervously held hands. They looked ordinary to me because they were: At that time in Texas, 26 percent of all people were uninsured—including many folks I knew from Port Aransas. Including my brother Matt, who had grown up to be a commercial fisherman.
So my first impression of St. Vincent’s patients was one of ordinariness. The cancerous schizophrenic criminals in the waiting room of my imagination turned out to just be ordinary people. If I feared anything from these people, it was that they would see through me. They would notice that my white coat was too big, and realize I knew little about medicine.
It struck me over the years that St. Vincent’s House, when the student clinic is in full swing, is divided. If you walk into the waiting room and turn left, into the offices of the House, you will find that most of the people who work and volunteer there are African American. If you walk into the waiting room and turn right, down the hall into the clinic, most of the medical students and doctors are white. The waiting room, where the patients aggregate, is mixed. Historically, St. Vincent’s House had been a place where black workers and volunteers served a largely black clientele. The clinic was a bit of an anomaly—Dr. Beach, the volunteer doctor who oversaw it, was white. And the student volunteers were a diverse group, but were (like me) still mostly white. According to Mr. Jackson, this was a cause of some concern at the House. Community members aware of the history of medical and scientific experimentation on American blacks worried that the medical students were “experimenting” on the patients. And in a way this was true. We weren’t doing scientific research there, but we were learning.
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