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Those who trained at Bellevue in the 1980s knew exactly what to expect: Bellevue meant AIDS. Dr. Saul Farber, NYU’s iconic chief of medicine, insisted that none of the 1,500 yearly applicants for the hospital’s seventy-eight prized residencies had ever expressed the slightest concern about the disease. On the contrary, they seemed eager to tackle it. Farber’s words are part of the familiar narrative of the AIDS crisis at Bellevue: a place where doctors went the extra mile, as was the creed, to serve the most vulnerable and despised patients, whatever the cost to themselves. When others flinched or turned their backs, Bellevue stayed the course.
There is much truth to this. The challenge of battling AIDS held a strong appeal to those steeped in the Bellevue tradition, as well as those hoping to become part of it, including members of the gay community. At the same time, it warned off those who thought the battle too dangerous or depressing or simply not for them. Medical students are “canny planners,” an intern noted. “Over and over [they] mentioned to me their intentions to lie low, ride the epidemic out. ‘I wanted to go to New York, but I never even applied,’ said one. ‘I couldn’t stand to see so much AIDS.’ ”
For many who did come, reality set in quickly. A survey of 250 interns and residents at four New York City hospitals (most from Bellevue) revealed “a substantial degree of concern about acquiring AIDS” and a deep ambivalence about what to do. Twenty-four percent of the sample believed that “refusing to care for AIDS victims was not unethical,” while 34 percent felt they should be allowed to make this decision for themselves. Dr. Nathan Link, the study’s lead author, worked at Bellevue. “The view that doctors may refuse care to patients appears to undermine the tacit social contract that has long existed between physicians and their communities,” Link declared. “Whether these views reflect trends that will compromise the level of medical care…available to AIDS patients remains undetermined.”
Having stuck himself more than once with a contaminated needle, Link knew the emotions at play. A terrifying disease with an irreversible outcome had put everybody on edge. “We all felt it on some level,” a chief medical resident recalled. “There was a lot of talk going around about AIDS and the ‘Four H’s’—the homosexuals, heroin addicts, Haitians, and hemophiliacs. We thought of ourselves as the ‘Fifth H’—the house staff.”
While an open refusal to treat AIDS was rare at Bellevue or neighboring NYU Hospital, it did occur. “I’ve actually seen attending physicians take stances of clearly preferring not to, to the point of refusing to, take care of [AIDS] patients,” said Dr. Roger Wetherbee, NYU’s director of infection control, in 1985. “I’ve never seen this before with any other disease.” For Wetherbee, the emotional toll of AIDS was even greater than the fear of contagion. “I’ll tell you very frankly,” he said, “that I’ve managed, either accidentally or somehow intentionally, to not care for more than one or two patients at any one point in time.”
Implicit in these remarks was the matter of covert resistance—a problem almost impossible to gauge. “The AIDS patient who never quite gets visited on morning rounds ‘because there’s nothing more to say,’ ‘because all the students upset him,’ ‘because [someone] will come back and talk to him later’ is all too familiar,” an intern wrote of her Bellevue experience. “So is the thin, feverish young man who waits somewhat longer than his turn in the emergency room.”
Frustration played a role. Medical school had emphasized the life-saving miracles of medical science; AIDS revealed the horrors of an illness no one could figure out, much less contain. “I mean this is a place where people who had their legs chopped off in an industrial accident come, and we’re the first people to put them back on,” said an intern, referring to Bellevue’s world-class emergency services and microsurgery department. “We’re used to miraculously helping people.” Worse yet, the victims now flooding the hospital were mostly the same age as the medical staff assigned to treat them. “Every third admission seemed to be a patient in his mid-20s who looked as if he’d arrived from Dachau or Biafra,” a Bellevue resident confessed. “Witnessing your own generation dying off is not for the faint of heart.”
Was medical training compromised in a climate of such relentless gloom? Did seeing so many AIDS patients stunt one’s professional growth? Was there too much focus on a single disease? Publicly, at least, such questions were quickly brushed aside. “AIDS is so very complicated that it teaches you a great deal—from immune infections to cancer,” Dr. Farber told the press. “AIDS is the study of medicine and everyone who treats it deserves the Silver Star Medal.”
Privately, though, Farber had his doubts. Bellevue already had one albatross around its neck as the quintessential “snake pit” or “crazy house” of Hollywood lore. Would it now be known as America’s AIDS hospital as well? Ideally, Farber wanted these patients quarantined in well-equipped state institutions, relieving Bellevue of another headache it couldn’t afford.
As for AIDS as a teaching tool, the verdict was decidedly mixed. The origins of the disease were still a mystery, after all, and the illnesses it triggered were exotically rare. To train at Bellevue in the 1980s meant seeing more cases of Kaposi’s sarcoma than breast cancer, more obscure parasitic infections than the common flu. When one faculty member asked his students to keep a list of the diseases they’d observed in their eight-week rotation, half the logs contained “pneumocystis pneumonia.” A third-year student described his morning rounds this way: “One woman has rampant diabetes; another has belly pain. A young Hispanic male complains of a chest infection, which in any other hospital might suggest ordinary pneumonia. Here at Bellevue…we think of AIDS.”
The problem, which Farber acknowledged, was that students might learn some valuable lessons about compassion, but precious little about how to put the vast toolbox of modern medicine to good use. Where were the moments of satisfaction that came from achieving a positive result? The life of an AIDS victim might be extended for several months by treating a secondary infection, but the end result was the same. “They all die on you,” a young doctor lamented. “It’s intense, low-tech care.”
Some struggled to put the experience into words. A resident who’d come to Bellevue to “serve the underserved” found herself “buried alive” in a world of endless plague. “AIDS had saturated our training…,” she recalled. “Every day felt the same—legions of feverish, emaciated patients admitted from the emergency room….There was a Third World feel to our existence, a soul-numbing tedium of affliction and despair.”
At times, the frustration boiled over. Friedman-Kien recalled a grand rounds talk he gave on Kaposi’s sarcoma at which Farber himself stood up and said, “Thank you for this very nice lecture, doctor, but why does NYU have to be the Titanic?” Though offended by the remark, Friedman-Kien understood the consequences for everyone in the room. His own practice had begun to suffer, as longtime private patients drifted away. “We know how involved and dedicated you are to AIDS,” they told him. “Would you refer us to a doctor who’s less busy with those problems, so we don’t have to interfere with your function?”
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In 1986, Bellevue’s Dr. Robert Holzman toured the much touted AIDS Unit at San Francisco General Hospital with a group of colleagues from New York. The differences were striking. “Almost everything in San Francisco was geared to the gay patient,” Holzman recalled. “There were only a handful of drug abusers in the AIDS Unit, and they seemed just about invisible.”
The contrast spoke volumes about the two cities. Most every San Francisco AIDS victim in the 1980s was white, male, and gay. That once had been true in New York City, but no longer. The majority of AIDS cases now included heterosexual black and Hispanic drug addicts, their partners, and children. San Francisco also boasted a gay rights movement with the clout to get things done. And that was due, in large part, to the well-educated, middle-class backgrounds of those with the disease. While New Yorkers were angrily debating calls for needle exchanges, free cond
oms, and housing for AIDS victims (“Not on my block” became the rallying cry), San Francisco was opening clinics, group homes, and hospices for the terminally ill. Small wonder that the average stay for a typical AIDS patient at Bellevue was about three times longer than at San Francisco General, and that virtually all of Bellevue’s cases were readmissions, sometimes for the fifth or sixth time. All too often, the patient had nowhere else to go.
There is never a good time for an epidemic to strike a city, but some moments are surely worse than others—AIDS in New York being a prime example. Still reeling from the financial woes of the 1970s, City Hall had slashed a number of department budgets, with public hospitals suffering more than most. One reason was simple arithmetic. Institutions like Bellevue had seen their occupancy rates drop in the years before the AIDS epidemic. Another was simple politics. When the Comptroller’s Office asked the various community boards to list their top priorities, police, fire, schools, garbage collection, parks, and transportation topped the list. “We came in about 47th out of 50,” said Dr. Jo Ivey Boufford, president of the Health and Hospitals Corporation. Public charity patients remained among the least popular constituents—a perception that only hardened with the coming of AIDS.
Almost every state beyond California would waste years ignoring the epidemic. New York governor Mario Cuomo was reluctant to fund AIDS projects early on, saying the money wasn’t available, while Deputy Mayor Victor Botnick insisted that New York City had “no AIDS crisis” as late as 1985—by which time 20 percent of Bellevue’s patients were HIV-positive, and 3,766 AIDS-related deaths had been recorded citywide. In Washington, meanwhile, President Ronald Reagan had carefully distanced himself from it all—partly because of the promises he’d made to slash domestic spending, and partly to mollify supporters who saw AIDS as divine retribution for sinful behavior. Why focus on a preventable disease that appeared unlikely to spread beyond the confines of unpopular groups whose perverse habits had caused the problem in the first place?
Even parts of New York’s gay community opposed a full mobilization against AIDS out of fear that their rights to privacy and sexual expression would be trampled in a public health crusade reminiscent of the forced quarantine of “Typhoid Mary” in the early 1900s. The internal battles over whether to close down the bathhouses or support mandatory AIDS testing served to mute a powerful voice when it was needed most. It all made for a perfect storm of delay and neglect.
Statistics showed that 5 percent of the public hospitals were treating 50 percent of the nation’s AIDS patients by the mid-1980s—most located in California and, especially, New York. And that put enormous pressure on an institution like Bellevue—the largest admitting facility, by far—which housed more than a hundred cases on an average day. Reaching its jam-packed emergency rooms meant inching through corridors lined with cadaverous young men strapped to gurneys or slouched in wheelchairs. For the first time in anyone’s memory, ambulances bringing in stroke and heart attack victims were diverted to other hospitals. Each AIDS patient at Bellevue meant more nursing hours, more specialists, more CAT scans, chest X-rays, respirators, and pricey drugs.
Who would foot the bill? Private health insurance was always a rare commodity at Bellevue, and those who held a policy before the epidemic started—mostly gay men with a job and a permanent address—rarely got to renew it. Insurance companies took to weeding out homosexuals by flagging the zip codes of neighborhoods like Greenwich Village and, in one instance, scrutinizing “single men without dependents whose jobs entailed no physical exertion.” This left Bellevue to limp along with funds cobbled together from erratic state and city programs bolstered by Medicaid coverage for the indigent. It was never enough.
On returning from San Francisco, Holzman and several colleagues wrote a memo describing Bellevue’s problems and needs. “Over 60 percent of our [AIDS] patients are drug abusers,” it began. Some were prisoners from Rikers Island; many were homeless and mentally ill; most had horrific multiple infections as well as HIV. Resources were slim, staff morale dangerously low. A “pervasive fear of contagion” had taken hold at Bellevue, compounded by “depression due to therapeutic impotence”—the inability to heal. Two words described the current mood of the hospital: “stressed” and “overwhelmed.”
Some remedies were easy. It didn’t cost very much to serve AIDS patients their meals on paper plates with plastic utensils or to give the cleaning staff galoshes to mop up the excretions. Gowns, face masks, double gloves, and goggles became standard gear for those on the front lines, with each ward getting a special ventilator (or Ambu-bag) to replace the S-shaped mouth-to-mouth devices commonly used—and feared—by staffers in AIDS-related crises. “It wasn’t just a ‘better safe than sorry thing,’ ” Holzman explained. “It was about making people feel secure enough to do their jobs.”
The centerpiece was a special AIDS unit to provide “short-term intensive primary care nursing for selected patients.” Beginning as a ten-bed operation, it quickly expanded to twenty, then thirty, then forty—the unit segregated on account of sanitation (the huge volume of vomit and diarrhea) and patient protection (the extreme vulnerability to hospital germs). Known as “17 West” for its location, the unit was soon treating a third of Bellevue’s AIDS cases, which eased the load in other parts of the hospital. Those in the final stages of the disease, the “actively dying,” were moved to a group of single rooms on “12 East” to spend their last days in relative peace. It was perhaps the closest one came to hospice care in mid-1980s New York City, where terminal AIDS patients had few options beyond the generosity of friends, a homeless shelter, and the proverbial park bench.
Treating these patients was either a nightmare or a point of pride, depending on the teller. “Imagine somebody completely miserable, covered with lesions, maybe scary-crazy,” a former intern recalled. “Now picture somebody right out of medical school, five feet tall and maybe a hundred pounds, poking at him with gadgets and needles, and you get a tiny sliver, minus the God-awful smells, of what it felt like to walk into the place.”
Others, though, seemed grateful for the chance. AIDS was humbling. It taught one humility and perspective. A resident spoke of returning home each night to his wife’s edgy command to shower before touching anything. “I can’t blame her. It’s a bit unsettling,” he said. “But, on the other hand, working with the acutely ill…you cut out the superficial, the bullshit….It deepens your humanity.”
One thing was certain: the AIDS Unit wasn’t about saving lives. Five years into the epidemic, there was no cure in sight. And that put a premium on greater patient comfort and care. According to the nursing supervisor, AIDS offered a prime example of what her profession did best. It was, she said, “a nurse’s disease” rather than “a doctor’s disease”—not just because nurses spent more time with patients, but because their skills were better than anything “a doctor can prescribe.” The evidence ranged from a device the nurses designed that allowed those with painful mouth sores to chew their food more comfortably to the simple kindness of allowing the patient’s partner to stay beyond visiting hours. “It may sound corny,” an AIDS nurse added. “But when you’re caring for someone who knows he’s going to die, you know he needs you….All that’s left are two human beings.”
Fittingly, no one ever complained about the block letter sign taped above the nurse’s station on 17 West:
THE ONLY THING BETWEEN THIS PLACE AND THE TITANIC—THEY HAD A BAND!
Given the large number of AIDS-related cases at Bellevue, troubling legal and ethical issues were bound to arise. “It’s different from other diseases,” a doctor explained, in that every patient knows “he’ll be dead within two years, weighing perhaps 65 pounds, incontinent, in severe pain [and] experiencing mental changes.” Sooner or later, a decision had to be made to stop treatment and let the person die. But how far along did that person have to be, and who would decide? Could he designate a friend or family member to make his wishes known if he were unable to do s
o himself? Must the instructions be written out, and, if so, how precisely? Could a hospital get involved without subjecting itself to a lawsuit—and serious financial loss?
This was virgin territory in the 1980s. While New York state no longer contested the right of a competent adult to refuse medical treatment, complex issues surrounding the “right to die”—especially living wills and health care proxies—were just beginning to emerge. One of the key early struggles, largely forgotten today, involved a patient at Bellevue in the final stages of AIDS.
In the summer of 1987, Thomas Wirth, a gay artist from Greenwich Village, was admitted to the hospital with toxoplasmosis, a parasitic brain infection. Having watched a close friend suffer horribly through the final stages of AIDS, Wirth had left written instructions to withhold “life-sustaining procedures” when there was “no reasonable expectation of recovering or regaining a reasonable quality of life.” The document gave Wirth’s friend, John Evans, the power of attorney in the event that Wirth could no longer speak for himself.
Within a week of his admission to Bellevue, Wirth fell into a coma, leading Evans to demand that nothing further be done. The hospital quite naturally objected. Sidestepping the larger issue of AIDS, it described toxoplasmosis as a condition often successfully treated with antibiotics—and not, therefore, a death sentence. With drug therapy, Wirth might at least regain consciousness and tell his doctors how he wanted to proceed. Without it, he had no chance at all. “The situation could resolve itself,” a Bellevue spokesman explained. “He could come out of [his coma] next week and say, ‘I don’t want any more treatment,’ and we would have no problem with that.”
A lawsuit quickly followed. Evans claimed there was nothing complicated about the wording of the document or the wishes of the writer. Thomas Wirth was now suffering the very horrors he’d hoped to avoid. “He wanted to die with dignity,” Evans asserted. “What he didn’t want to happen is happening.”
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