Four
Safety Nets
September 2005
Daily Log—J.S.
Picked up my ID at Maimonides a week after Hurricane Katrina knocked the stuffing out of New Orleans. Charity Hospital, the city’s big public hospital, refuge of the poorest people, was shut down. As I rode the D train across the Williamsburg Bridge and squinted at the early-morning sun coming in through the window, I experienced one of those weird movie moments, a dissolve, Manhattan skyline beyond the East River fading into gruesome television images: bloated corpses floating in dirty water, dazed people climbing on buses bound for safety or maybe exile, blundering president, sickening mold, weeping mayor, clueless head of Federal Emergency Mismanagement. Major systems breakdown, assuming—big assumption— that the systems were ever in place. Barbara Bush, presidential mom and former first lady, was quoted all over the place saying people forced to leave their homes, possibly forever, won’t really mind, because they are so poor anyway. Later Googled and found replay on Internet of Marketplace [the public radio show].
Here are the exact words of the mother-in-chief:
What I’m hearing, which is sort of scary, is they all want to stay in Texas. Everybody is so overwhelmed by the hospitality.
And so many of the people in the arena here, you know, were underprivileged anyway, so this . . . this [she chuckles slightly] is working very well for them.
What’s the word they use in Borough Park? Shanda? That’s it. Shame.
There are many ways to be dispossessed—hurricanes, wars, poverty—and of course disease, the great disrupter, mercurial and unsparing as weather. In modern society we rely on complex systems to protect us when the winds sweep in, when planes attack, when we can’t pay the rent, when we fall ill. At Maimonides the desire to take responsibility was great, to provide a safety net for people who were sick, but the system was overloaded. Sometimes people fell through the holes, despite the best of intentions.
Dr. Gregory Todd and a patient called Mr. Zen arrived on Gellman 7, a general-medicine floor, within a week of each other, in August 2005, a week or two before the levees broke in New Orleans. Although Todd was the older of the two, his arrival marked a new beginning, while Zen was at the beginning of the end.
Zen was one of Todd’s first patients after he became a member of the hospital’s in-house staff of salaried physicians, called “hospitalists,” who treat patients only while they are in the hospital. This type of medical practice had grown significantly in the past decade, as insurance paperwork and malpractice costs have made private practice less and less appealing for primary-care doctors. Also, the hospital job required a more limited commitment: regular hours and patients whose demands would become someone else’s problem once they were discharged.
Todd had grown up in Henderson, Kentucky, a small city on the Ohio River, onetime home of John James Audubon, the wildlife artist. Todd became a lawyer and came to New York to work in securities law, for an investment banking firm. At the age of forty, he decided to become a physician. By the time he completed his training at Maimonides, and then was hired as full-time faculty and met Zen, Todd was forty-nine years old. Along the way he had become a Buddhist. Zen was an atheist, but he indulged his doctor’s enthusiasm for Buddhism and discussed it with him, as far as the patient’s English would allow.
Hard cases, including a sizable number of patients subsisting on ventilators, went to Gellman 7. Todd was not sanguine about his patient’s prospects. “My biggest concern with him was his unwillingness to come to grips with his diagnosis,” he said. “It was the scariest thing for me, because I knew the outcome of this. It was never going to get better; it was only going to get worse. When I met him, the tumor was already too big to be surgically removed. Urology had said it would probably kill him to remove this tumor. Sarcomas do not respond well to chemo or to radiation, and this we proved.”
Todd cared for Zen through an entire chemotherapy regime plus twenty-eight cycles of radiation therapy. “There’s a fine line between acknowledging you’re never going to cure the cancer versus getting the cancer to remit to a stage where someone can continue to have a pleasant life for a period of time,” said Todd. “We were trying to extend the comfort of his life, though ultimately the finality would be determined by the tumor, and everyone collectively sort of knew that. No one held out false promises for him, and everyone was very clear about what they were doing, but I’m not sure he interpreted it that way, even though that’s what he was told. Hope and faith are powerful things, and to a certain extent you don’t like to get in the way of them, because they do keep the person motivated and their spirits strong.”
One day I asked Chris Kam, the social worker assigned to the case, how to spell Zen’s name, as it appeared in various ways throughout his medical record, a voluminous stack of notations contained in a thick binder. Only the emergency room was fully computerized.
“However you want,” Kam said, then lifted a dark eyebrow as he added, with a smile that wasn’t a smile, “That may not be a correct name, of course.”
When Kam had asked Zen for a copy of his passport, Zen told him it was in his apartment, but his friends had been unable to locate it. Zen was a restaurant worker, who had come to the United States from Taishan, a coastal city in Guangdong province, China, best known abroad as a signficant launching pad for Chinese immigration. Taishan’s official Web site advertised the exodus as a point of pride: “1.3 million overseas Taishanese distributed in 91 countries and regions. Therefore, Taishan is reputed to be China’s first hometown for overseas Chinese.”
Kam, a slender man with a broad, handsome Chinese face, was also an immigrant. Now thirty-nine, he had moved from Hong Kong twenty years earlier; he’d studied philosophy and psychology as an undergraduate student at Staten Island College and then continued his education at Columbia University, where he received a master’s degree in social work.
Over the years he had had seen a lot of Mr. Zens. “We have many Taishanese in Bay Ridge,” he said. “They come for money. Because unless you are well educated or own a business or are politically connected with powerful sources and live in big cities like Beijing or Shanghai, there’s not much opportunity in a rural area. You ask this illegal, undocumented group, the majority of them say, ‘We earn more money here.’ They pay seventy thousand dollars—that’s the price tag now—to the smuggler. If you work in a Chinese restaurant, you don’t get sick, you are a good worker, you pay off the debt in three years. Zen? He doesn’t have any opportunity in China. He doesn’t have a college degree, he is not a skilled professional. He’s here because he earns more money.”
Kam’s sociology lesson continued. “You are a male, you work in a Chinese restaurant somewhere, in Florida, in North Carolina. Standard pay is two thousand dollars a month with room and board. Because you live there, you don’t spend money. In three and a half years, you pay off the debt and then date the guy or girl you work with in the Chinese restaurant, and they get pregnant and come to New York City, pay three hundred and fifty dollars rent for a room, and come to our Eighth Avenue clinic. They get Medicaid under PCAP [during Governor Mario Cuomo’s administration, New York State began offering Medicaid coverage for all pregnancies, regardless of immigration status], and after they give birth, they send the three-month-old back to China and send two hundred dollars back to China every month, and you are set.”
Kam was unstoppable now. “After three, four years, your four-year-old is ready for school. She comes back, and your wife is pregnant again. This time you take care of the second child here. Your debts are paid off, you accumulate some money, you are working, maybe you open a small restaurant.”
He stopped dramatically, raising his expressive eyebrows for emphasis. “You ask, ‘Why is he here?’ That’s the attraction,” he said, and then again laughed one of those mirthless laughs. “What a wonderful life!”
The wonderful life had bypassed Mr. Zen. After fifteen years of living in New York, now in his ear
ly forties, he had not acquired a wife or a child or a house. He had, however, acquired a sarcoma in his pelvis that was already too big to be surgically removed when he came into the hospital emergency room.
He readily settled in his room on the seventh floor of the Gellman building and became a favorite patient. His quiet gratitude was a welcome respite from the usual barrage of gripes and questions from patients and families. “He was stoic to the point you’d have to push him to hear a complaint,” said Dr. Todd. Besides being brave, he was gentle—and he stayed for a very long time, in a pleasant two-bedded room, where he was divided from a succession of roommates by a curtain. He would be there long enough to watch four seasons go by. His bed was by the window. From the view on the seventh floor, Brooklyn appeared surprisingly leafy, until winter came.
Eileen Keilitz, a nurse on Gellman 7, liked Zen immediately. “When he came to us, he was very virile-looking. You would never think he had cancer or anything like that,” she said. “He was very independent. He would help turn himself and do things for himself. In the beginning, for many months, he used to get these pain patches, these lidoderm patches on his leg, and he would just cut them open and insist on putting them on himself. Anytime you asked him, ‘Do you have pain, do you have this, do you have that?’ ‘No, no, no, no.’”
Zen spoke enough English to convey basic information: What did he eat? Did he move his bowels? How did he sleep? Had anything changed? If he had more complicated matters to discuss, he could talk to Chris Kam, who came to see him at least once a week at first, less often later on; in recent years the hospital had cut the number of social workers because of the budget. Kam worked for the hospital part-time. The oncologist who treated Zen— Dr. Yiwu Huang from the cancer center—was Chinese and willing to answer questions, but he was always in a hurry.
Keilitz stopped by whenever she was in the hospital, but, like most of the nurses, she worked 3 twelve-hour shifts a week, so she wasn’t there many days. They always smiled at each other and chatted, mostly in monosyllables.
Nice day. Yes. How do you feel? Fine. Can I get anything for you?
What could she know of him? Yet when Keilitz and other nurses and aides on the floors talked about Zen, their emotions were evident. Maybe they felt they knew him because cancer was the true melting pot. Unlike AIDS or diabetes, cancer was a democratic disease, distributing itself with cruel impartiality, disregarding sexual behavior, eating habits, exercise, income, age, or ethnicity. External differences became more and more irrelevant, because almost every cancer patient—educated or not, wealthy or not, citizen or not—eventually became fixated on the same questions: Has my tumor shrunk? Has the disease spread? Can you stop it? Is there hope?
Zen had a language barrier, but that was in some ways the easiest one to circumvent. Few cancer patients are exempt from feeling confusion and uncertainty, especially after exposure to an array of doctors and nurses with varying attitudes and skill when it comes to discussing prognosis and options. The medical people had a common vocabulary, but styles so different they amounted to cultural divides. Some were optimistic, some just stated factual data, some lapsed into medicalese, some simply said, “I am not God.” The gifted ones could make strong connections no matter what language their patients spoke.
Keilitz said she felt such a bond with Zen, and the patient indicated that he reciprocated. For her he wasn’t an ever-shrinking mass of flesh surrounding an ever-growing tumor, or the sum of his medications and symptoms. He was a man, a son, and a brother; his mother and sister lived back in China. She knew his eating habits. He showed little interest in the hospital food, not even the kosher Chinese cuisine the kitchen worked so hard to create at the suggestion of Joanne Quan, a member of the hospital board of trustees, vice dean for finance at Columbia University’s Mailman School of Public Health. By the time the food was cooked, cooled, and reheated down in the labyrinth basement, then sat on carts, it lost its flavor, no matter how much seasoning was poured on in the kitchen. Keilitz also knew that Zen wouldn’t starve. Almost every night one or two friends showed up with containers of Chinese food. Even when Zen underwent chemotherapy treatment, he could muster appetite for rice congee with bits of fish on top.
Chris Kam always knew that Zen was there for the long haul. As an undocumented worker, he was entitled to treatment only so long as he stayed in the hospital. Most illegals went to the city hospitals, like Bellevue in Manhattan or Coney Island in Brooklyn, which used Maimonides residents. St. Mary’s in Brooklyn, which had served the immigrant poor for more than a century, was on the verge of closing; its parent organization was Saint Vincent Catholic Medical Centers, about to file for bankruptcy protection. But, by law, patients who came in through the emergency room had to be treated until they could walk out the door.
By the time I met Zen, he had been in the hospital seven months. His bill, which no one expected would be paid, had just topped $1 million; even the comparatively generous emergency Medicaid payments offered in New York would probably cover only about 10 percent.
One day, outside Mr. Zen’s room, I joined Chris Kam and Lisa Keen, another social worker. She had arrived at the hospital thirty-five years earlier, reed-thin and always available for a satisfying protest march. Now a doting grandmother, she was no longer slender and walked with a limp acquired a few years earlier, when she was knocked over by a wave at the beach. Her method of protest was dark humor and dry commentary on the irrationality of the system, even as she kept trying to help patients. She often invited me to go on rounds with her.
Keen made a crack about working on Zen’s discharge plan.
“He will be here until the last day,” said Kam.
“Why?” I asked.
Kam answered matter-of-factly, “Because he has refused to leave the hospital, and there is no placement for him. He is undocumented.”
“Can’t you kick a patient out?” I asked.
“You can’t? I don’t know,” said Kam. “Each time they give a different answer. What’s the answer for today?”
Keen played along. “We do not actively throw anybody out. However, we try to encourage them if there’s something that would be better for them, and occasionally . . .”
Kam finished her sentence: “. . . we do throw people out.”
Keen laughed. “We walk them to the elevator and say good-bye. Like when we had a smoker who went out for smoking breaks even though she was told if she left the floor, she’d be discharged.”
Kam offered another example. “I remember a Chinese, Mandarin-speaking, undocumented patient who had some kind of cancer, terminally ill, and she came to the hospital. I saw her the first time, and then we discharged her. It was very hard to discharge her. The only thing we could do was give her morphine from the pharmacy, and she came back two weeks later yelling at me that I did a poor job by discharging her because she is in so much pain. I said to her, ‘That’s the nature of cancer. If you need more medication, you should see your primary doctor.’ But we checked her back in. That time she stayed for a few days, and when she got stable, my boss actually asked the security guard to escort her out.”
He looked at me. “So we do kick people out if they are ambulatory.”
I said, “Mr. Zen is not ambulatory.”
“Right,” said Kam.
Mr. Zen was not the only enduring patient. Not by a long shot. The record went to the ninety-year-old man who had been on the Kronish 5 wing for three years; every time a bed came available in the nursing home where his family wanted him to go, he was too sick to move. The hospital had far more than a normal share (as many as eighty at a time) of “vent patients,” those requiring artificial-breathing machines to stay alive. Melissa Turok was the hospital’s ventilator-nurse case manager. She spent her days examining patients to see which of them could be “weaned” from vents and discharged, either to their homes or to long-term-care facilities.
Turok was middle-aged but still careened around on three-inch heels, examining patients and
then negotiating with insurance companies. “Most managed-care companies do not want to pay for acute rehab if someone is standing on two feet and ambulating twenty or thirty or forty feet,” she said. “They don’t want to spend the money.” She had to negotiate with families who couldn’t imagine that their loved one was ready to leave the hospital directly from the ICU after open-heart surgery. I watched her talk to people who looked inert to me, like the retired police officer who clicked his tongue and rolled his eyes. “His brain is perfect,” said Turok. “Imagine how he feels now that he can’t communicate with people. Why is he still here? He had a colostomy, [is] a chronic smoker, his blood gases are horrible, his legs are swollen. He’s going to end up going to a facility, and it’s going to eat up his legacy to his family. So now he’s dealing not only with being on a trach and a vent and a colostomy—can you imagine his body image?”
Many of these patients would never leave. A large proportion of this intransigent subgroup was elderly Orthodox Jews whose rabbis decreed they could not be unplugged. (Rabbis have varying interpretations of the law requiring life to be maintained, so families often search until they find the rabbi whose ruling matches their desire.)
The vent population, which was scattered all over the hospital, was not to be confused with another group, the “frequent fliers,” patients who kept coming back. “They’re the ones who never got their prescriptions filled and are returning in the same condition they were in three weeks ago, because it’s just caught up with them again,” said Todd, the Kentucky-born Buddhist securities lawyer-turned-physician. “For the want of thirty bucks’ worth of pills, they’d still be home.”
In addition to medical, financial, and religious reasons for lingering, the poorest immigrant patients often had a different understanding of what the hospital was for. “Some of our immigrant populations are used to different kinds of health care,” said Todd. “You do have populations of patients who do believe they can effectively check themselves in to the hospital and stay as long as they want. And you have to battle with that process. They are used to a system that would never send them home, even though not much was done for them while they were there because they didn’t have the resources. It’s actually quite of a shock for them to hear, ‘You have to go home. You can’t stay in the hospital.’ They look at you like, ‘I don’t want to.’ This isn’t about want. It isn’t renewing your reservation at the Ritz.”
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