First of two articles

Like many young doctors, Dr. David Barnes, 31, chose his specialty, infectious diseases, because it seemed to embody the kind of satisfactions the practice of modern medicine could offer. Immunizations and antibiotic drugs have made it possible to fight the infections that have been the major cause of human mortality throughout most of history, and his chosen field promised a career spent preventing disease and curing it.

The reality that awaited him the other day when he arrived at work on Osler 5 at Johns Hopkins Hospital in Baltimore, the floor where the AIDS unit is located, was somewhat different. A gay man seriously ill and likely to die from AIDS wanted to sign out "AMA" (against medical advice), the nurses told Barnes. The patient couldn't stand being in the hospital any longer, he had told them: He wanted to be at home with his lover.

Since it was recognized as a deadly reality only eight years ago, acquired immune deficiency syndrome has given a generation of doctors and nurses an unwanted taste of the past.

The confident assumption that medicine is a science and not an art, the product of decades of steady and sometimes spectacular advances in drugs and technology, has been shaken by a disease that recalls the days when tuberculosis and polio killed young patients while doctors watched helplessly.

On Osler 5, history seems to be repeating itself. All medicine can do is postpone death.

"I've been here for 33 days," the patient, a thin, dark-haired man who appeared to be in his late 30s, said simply when Barnes went to his room to negotiate on his request to go home.

The man listened and nodded as Barnes explained a plan to take him off his antibiotic and watch him for a few days to determine whether the drug was causing his fever. If the patient went home, the drug would have to be continued because of risk that his fever stemmed from an infection that might suddenly worsen, threatening his life. And, Barnes said, there was another danger: The man's platelets, blood cells important in clotting, had dropped to alarmingly low levels. If he fell at home, even a bump on the head could cause a brain hemorrhage.

But the patient was adamant, and finally Barnes gave in, agreeing that he could leave if he would return soon for a checkup.

Later that day, Barnes went to see his patient again. The elation of the morning had vanished. The man's lover had called to say he would not take the patient home until he was better. "I was packed," the patient told Barnes.

Many doctors would not have considered letting such a seriously ill patient leave the hospital; for Barnes, it had been an acceptable risk. "Many patients with AIDS don't get that well," he said. "It's important for them to spend as much time as possible out of the hospital." In treating AIDS, he explained, "the medical decisions are not the difficult ones."

Dr. Jerome E. Groopman of Boston's New England Deaconess Hospital, who estimates he has watched 300 AIDS patients die, talks about keeping a diary, recalling Samuel Pepys' chronicle of the London plague.

"We had really started to think modern medicine had conquered everything . . . and here comes this disease where, really, nature is out of control. Our tools are so impotent," said Dr. Stuart Nichols, a New York psychiatrist who runs a support group for AIDS doctors.

The satisfaction in working with AIDS, as Barnes and others have learned, comes from small victories: keeping an infection at bay, helping a patient go home one more time. The demands on the time, energy and emotions of those working with AIDS are extraordinary, for they must be willing to accept the intellectual uncertainty of treating a complex and little-understood disease and to withstand the constant pain of being involved with young, dying patients.

A relatively small proportion of the nation's health care workers, concentrated in cities with the most AIDS cases, are providing the bulk of care for people with AIDS. Many doctors and nurses in suburban or rural areas have so far had little or no contact with the disease. But in operating rooms, clinics and medical schools AIDS has had a profound impact on the assumptions and attitudes of the men and women who provide this country with health care, generating enormous fear and forcing doctors and nurses to confront anew their responsibility to patients.

Some doctors and nurses -- particularly in specialties such as surgery, where contact with blood is frequent -- have refused to treat people with AIDS or have demanded that all patients be tested first. That led the American Medical Association last November to issue guidelines declaring it unethical for a doctor to refuse care to an AIDS patient, the first time the organization has taken such a stand regarding a specific disease.

"I think there are a lot of people in medicine now who are not at all comfortable about sitting at the bedside of someone who's dying," said Dr. Molly Cooke of the University of California at San Francisco.

Despite the disease's frightening and unknown aspects, a growing number of doctors, nurses and other health care workers now specialize in treating AIDS and have grown comfortable with it. And while modern medicine has frequently been criticized for emphasizing technical rather than human skills, AIDS seems to have opened a deep vein of compassion.

"Caring for people with AIDS gets to the core of what nursing is all about," said Kathy Vasquez, a nurse at the George Washington University Medical Center, and she could speak for many involved in treating the disease. "It stresses us, but it also calls upon us for every skill we were ever taught in school or ever possessed."

To treat AIDS is to be engaged by its intellectual challenges and inspired by the bravery of those who have it, according to interviews with dozens of nurses and doctors in the Washington area and around the country. These men and women say they take comfort in knowing they are doing their best against a plague. At the same time, they struggle to maintain ties with family and friends, to conserve their strength.

"It's like being in a war," said Dr. Deborah Cotton of Boston's Beth Israel Hospital. "You're working all the time to contain it, you want it to end, and yet it becomes your life."

Much of the primary care of AIDS patients has been rendered by homosexual physicians, many of whom became involved early because they had homosexuals among their patients before the epidemic began. The public's fear of AIDS and the disease's association with homosexuality and drug abuse have social repercussions for doctors and nurses working with AIDS patients, according to interviews.

Fear of becoming infected with the virus is a normal first reaction, a response that seems to recede as the disease becomes more familiar and confidence builds that the right precautions can ensure protection. Most of those interviewed said there were times they worried they might be infected.

Brenda Thomson, a nurse at the Washington Hospital Center, recalled helping an AIDS patient from his chair to his bed one day last summer when he suddenly became incontinent, his body fluids soiling her freshly shaven legs.

"I was in total shock," she said. "I immediately removed my shoes and panty hose and threw them in the trash can, and poked my head out the door and yelled to one of my coworkers. I told her what happened and she said, 'You get yourself out of that room and into the bathroom.'

"At that time, the policy was that if you were exposed, you were to clean yourself off with a 10 percent solution of Clorox {bleach}. And we didn't have any Clorox on the floor." Thomson has since tested negative for exposure to the AIDS virus.

Although a blood test is available so health care workers who fear they have been exposed to the virus can find out if they are infected, not all choose to be tested.

Cooke, whose third child was born last September, said her obstetrician offered to test her during the pregnancy, but she emphatically refused. Dr. Pamela Harris, a Washington cancer specialist who treats AIDS patients, said she, too, has not been tested. "I can't believe I would be positive," she said. "There's nothing I would do about it and if I tested positive, I don't know how I would handle that."

But fear has motivated some doctors and nurses to refuse to treat AIDS patients or to treat them reluctantly. A recent survey of hospital nurses by the State University of New York at Buffalo found that 50 percent were afraid of becoming infected. Cooke said that even in San Francisco she has encountered resistance from obstetrical nurses fearful of delivering pregnant women who were infected.

Dr. Peter Hawley of the District's Whitman-Walker Clinic said he knew of a few instances in the Washington area of surgeons refusing to do elective operations on AIDS patients. Christine Grady, a nurse clinician who works in the National Institutes of Health's AIDS clinic, said some NIH patients with AIDS who come from other cities had been unable to find doctors in their home towns willing to treat them.

While the medical profession's sense of helplessness has diminished somewhat since the availability of azidothymidine or AZT, the only drug approved for AIDS, the tools available for treating AIDS patients are limited. After a while, the strictly medical issues become familiar.

"There are a limited number of diseases that {AIDS patients} get," said Barnes, who began a newly created AIDS fellowship at Hopkins last summer. "In probably three-quarters of them, even though there's uncertainty about what's going on, these are problems that we've dealt with before."

What makes each case unique, and what consumes most of the energies of doctors, nurses, social workers and others caring for people with AIDS, are the psychological and social effects of the illness. The depth of emotional involvement required taxes the strength of even the most committed caregivers.

"It's painful, it's agonizing to {patients}," said Thomson. "It's not like cancer that affects a few body systems that we can control, or offer a glimmer of hope. With the AIDS patients, the entire body is affected . . . . They're totally unable to escape any aspect of the disease. They try to maintain as much hope as they possibly can, yet they all know what the final outcome is going to be. And, for most of the nurses, that's the hardest part."

"I do get close {to patients} and I keep saying I'm not doing it again," said Liz Tirri, a nurse on the Hopkins unit. "But it sort of sneaks up on you. All of a sudden you're there, smack in the middle, and somebody's breaking your heart."

A day with Barnes in the Hopkins AIDS clinic illustrates the kind of personal involvement that comes with caring for patients with the disease.

Starting at 8 a.m. and working without a break until after 11 p.m., he filled out patients' referral forms for social service agencies, fielded calls from clinic nurses, hospital administrators and worried relatives, and ran down results of laboratory tests. And he spent hours making rounds: talking with, examining and helping to plan the treatment of each AIDS patient in the hospital.

Nurses on Osler 5 were concerned about one young homosexual patient scheduled to go home that morning because he had come to the hospital with a rectal tear, suggesting he was still sexually active and might be spreading the virus to others. Barnes talked with the man and then called the AIDS treatment team's psychiatrist to see the patient before he left, hoping to emphasize once more a message about sexual abstinence.

In a room down the hall, another patient was demented and nearing death from the AIDS virus' devastating effects on his brain. The young man lay motionless in his bed, his emaciated limbs rigid from lack of use, his dark eyes vacant and his unlined face occasionally contorting with pain from bedsores on his back and foot.

A few months earlier, during a previous hospital admission, the patient -- at that time alert and intelligent -- had discussed with his family and Barnes his wish to have treatment withheld if the quality of his life and mind seriously deteriorated. Barnes and the other doctors caring for him were unanimous now in deciding that the time had come for "comfort measures only." But even though the man's condition was terminal, Barnes said, he might not die for weeks because his heart and other organs were young and relatively healthy.

Tirri said such situations are common, often provoking disagreements among doctors and nurses on the unit about how aggressively to treat dying patients. She added that it is often the nurse who first urges that the patient be consulted.

Nurses often bear a heavier emotional burden than physicians in treating AIDS because, caring for patients hour after hour, they have the most sustained contact with patients and family members. But according to Joyce Falsetti, another nurse on the unit, that can also make decisions on whether to continue treatment easier.

"The reason we probably feel more comfortable is that we see what {patients} go through every day, every hour," she said. "It's easier for us to be comfortable in letting them go if they so choose."

In another room nearby was the Hopkins AIDS unit's veteran, a tall man who had been one of the first patients admitted when it opened in February 1986 and who had been in and out of the hospital ever since. By this time, recovering from his fourth bout of pneumocystis pneumonia, a lung infection common in AIDS, he knew all the doctors and nurses on the floor and was as familiar as they with the complications of his disease.

"I was in the hospital for four months in the summer of '86," he told a visitor. "That's the summer they gave me last rites. But I fooled them."

The frequent hospital stays of AIDS patients and their often gradual slide toward death contribute to the close bonds formed with the doctors and nurses who treat them and intensify the sense of loss when they die.

Tirri recalled one patient who hovered near death in the Hopkins AIDS unit for six weeks. "That was really difficult for me and I had trouble leaving it here" at the end of each day, she recalled. She said that when he died at last, she went to view his body at the funeral home. "It helped to see him in his tuxedo," she said.

Over time, the constant stress exacts an enormous toll, and taking time to refuel becomes a necessary survival tool. Some health care workers, like Hawley, have found that they needed some time to get away completely from treating AIDS patients. Hawley returned to his job as medical director of the Whitman-Walker Clinic in September after a year's absence.

"I'd like to be someplace where I can make a difference without being so involved with patients," said Hopkins' Tirri. "I don't want to do this the rest of my life."

Others rely on support groups that have formed in Washington, Baltimore and other cities for health care workers treating AIDS. Doctors and nurses said such groups are needed because they cannot always seek emotional support from families and friends, who often worry about whether their work is safe or fail to understand their reasons for doing it.

Pamela Zurkowski, a nurse at George Washington University Medical Center, recalled sitting on the edge of a hospital bed as one of her AIDS patients told her calmly of his plans for committing suicide when the disease and the pain overwhelmed him. He said he planned to give a party for his friends. During the evening, he would retire upstairs and swallow a combination of over-the-counter drugs that he had been told would bring a peaceful death.

Zurkowski said she related the story later that morning at a support group for nurses. She said she felt guilty for failing to respond to the patient, but wondered what she should have said. "Thank God I had this meeting today to be able to come to," she told the other nurses.

With the disease continuing to spread and with experts pessimistic about the chances of finding a vaccine in the near future, those involved in treating AIDS see it as a commitment that will last through their careers -- provided they can withstand the emotional stress.

"I think those of us who have been doing this from the beginning and who don't mind doing it have gotten very good at it," said Dr. Sharon Lewin, a Manhattan physician. "If I have something to offer that another physician might not, I should do it. I don't see that this is going to come to an end."

NEXT: Facing AIDS in medical school