Burnout on Health Teams Reported : Care for the Care-Givers: Stress Hits AIDS Workers

Marta Ashley put on 35 pounds, spent 10 weeks in therapy and took half a month off from work.

Steve Abbott couldn’t stop crying in the middle of a staff meeting one morning.

Linda Maxey felt herself “burning out” and gave up her middle-management hospital job to spend two months backpacking in Nepal. She decided to return to the clinic as a nurse: no more management, no more public speaking.

Ashley, Abbott, and Maxey are among the thousands of volunteers and health professionals working with San Francisco’s 3,190 AIDS patients. Their stories illustrate a problem that is likely to become increasingly visible as the number of AIDS cases throughout the country grows: the problem of stress and emotional exhaustion among AIDS workers or, as some here put it, “Who will take care of the care-givers?”

Signs of stress are visible not only on a personal level here, but on an institutional level among many of the medical and service organizations that have served as models for other AIDS programs throughout the country:

--Staff turnover in the AIDS ward at San Francisco General Hospital, initially nonexistent, has risen to a point where administrators now anticipate a two-year or three-year “life cycle” for nurses there.

--Local AIDS service organizations that have so far largely relied on the city’s gay and lesbian communities are having trouble finding enough volunteers to provide counseling, grocery shopping and other support services to patients. They are broadening their recruitment efforts to the heterosexual population.

--A late-1985 study of more than 80 local doctors working with AIDS found that 56% reported feeling more stress since starting work with the epidemic. Forty-six percent reported an increased fear of death; 14% had entered psychotherapy as a response to work with AIDS. One-quarter of the doctors decided to limit the amount of time they put into AIDS work as a result.

“At first we came in with a feeling that burnout couldn’t happen to us,” said Dr. Paul Volberding, director of AIDS programs at San Francisco General Hospital since 1981. “But in the last year the numbers--and the fact that no drug has come along that’s really changed the nature of the disease--have really had a toll on us.”

Acquired immune deficiency syndrome attacks the body’s immune system, leading to a wide range of infections or dementia, and then death. So far, more than 35,000 Americans have contracted the disease and 20,000 have died. For health care professionals, the disease challenges the very basis of their professional identity. Doctors and nurses, trained to cure, increasingly are finding themselves limited to helping people “die with dignity.”

“It’s very difficult to bury patient after patient and realize as a physician you’re entirely helpless,” said Dr. Stephen Caiazza, a New York internist. More than 200 of his patients have died of AIDS. “After a while a doctor has an overwhelming sense of impotence.”

Victims Are Young

Many doctors compare the strain of AIDS work to that of cancer--or of pediatric oncology, because so many AIDS victims are young. “I’m not an oncologist and I didn’t pick out an area of practice with the conscious forethought that all my patients are going to die,” said Dr. Molly Cooke, an internist at San Francisco General. “It’s creepy to see someone who looks great--a great big, handsome guy--and think, ‘He’s a dead man.’ ”

And here in San Francisco, many of the epidemic’s victims are people very similar to the health providers themselves--well-educated, hard-working, successful. Some are even doctors.

“We’ve lost staff. I don’t think there’s any AIDS organization that hasn’t,” Volberding said. “That’s hard--first of all to lose the talent, second of all to realize it’s not ‘us and them.’ ”

Gay health professionals and volunteers played a leading role in developing AIDS care here, and as the epidemic has spread they have increasingly faced a double burden: caring for patients during their work hours, then going home to care for sick lovers or friends.

Death of Friends

“For two years we didn’t have anyone integral in the project lose someone who was a primary relationship, but that’s starting to happen,” said Steve Abbott of San Francisco’s Stop AIDS Project, which conducts educational workshops about the disease in the gay community. “People are burning out, not because of volunteer work but because of having to deal with their friends dying.”

Paul Boneberg, director of Mobilization Against AIDS, a political advocacy group, compared his feelings to “battle fatigue.”

“Many, many of the people I work with are ill, and many are dead,” Boneberg said. “I had an experience telephoning through our membership list from 1984. Close to one out of 10 of the people were deceased. It’s a devastating thing.”

While longtime AIDS care providers face the pressure of seeing patient after patient weaken and die, newcomers to the epidemic face a different set of pressures, said Dr. James A. Dilly, a psychiatrist who heads the AIDS Health Project, which provides various AIDS-related counseling services.

“The early stresses have more to do with getting geared up to take care of a new population with a new, frightening disease,” he said.

Some Disapproval

Some staff members experience stress when they suddenly find themselves taking care of members of groups they personally disapprove of or even find “repulsive,” like homosexuals or drug users, Dilly said. Others initially worry about catching the AIDS virus in the course of their work.

So far it appears extremely rare for health workers to contract AIDS through their work, although a new report out last week has raised fresh concerns.

Until now, it has been thought that the AIDS virus is spread only through the exchange of blood or semen, and not through casual contact with patients. The Centers for Disease Control in Atlanta have documented only six cases of infection among hospital workers, and these involved either the accidental injection of infected blood via hypodermic needles or prolonged exposure to body fluids.

Even when skin is accidentally pricked with a contaminated needle, chances of infection are very low, according to Ruthanne Marcus, who has studied the problem for the center. “We estimate the rate (of transmission through needle punctures) to be less than 1%,” she said. In contrast, the risk of transmission of the hepatitis-B virus through a needle puncture is between 6% and 30%, Marcus said.

But center officials said last week that they have recently learned of three cases in which health workers became infected with the virus through brief exposure to blood from patients.

Cuts or Breaks in Skin

Center officials hypothesized that the infections occurred through cuts or other small breaks in the workers’ skin--but not directly through unbroken skin.

Even education and protective measures are not likely to totally eliminate anxiety among health workers. Cooke at San Francisco General recounted talking at great length with a nurse at another hospital who was afraid of working with AIDS patients.

“After an hour and a half talking with her, she said, ‘I guess maybe I’ll believe it’s safe, but I still don’t want to do it,’ ” Cooke said.

In a controversial worker’s compensation case here earlier this spring, former San Francisco General nurse Norma Watson won a $5,000 disability payment for an ulcer she developed after being told to handle AIDS patients without a protective mask and gloves. Hospital administrators had ruled that protective clothing was unnecessary because the disease is not casually transmitted, but Watson disagreed.

“I had always the fear, knowing there is no medicine for the disease,” Watson said. “They claim (the protective clothing) hurts the sensitive feelings of the patient, but how about the nurse?”

Reactions Studied

Cooke, who conducted a 1983 study of medical interns’ and residents’ reactions to AIDS work, has found that health care workers’ fears of transmission decrease as they become accustomed to working with AIDS. When fears of transmission do persist, she said, they are often a mask for other worries.

“People articulate their concerns in terms of occupational safety, (but) I think there are other real concerns . . . (such as) the problems engendered in health care professionals by an unrelenting onslaught of patients we can’t make better,” Cooke said.

In response, she has changed her educational approach. “I no longer say, ‘Don’t be scared of the disease,’ ” Cooke said. “I say, ‘It’s a really scary disease, but let’s look and see what parts we want to be scared of and what parts we don’t want to.’ ”

The precise effects of AIDS-related stress on patient care are hard to determine. Some doctors cited a general fatigue or irritation with patients.

Doctors Get Angry

“There are many individual cases where a physician gets angry with a patient for not getting better,” said Leon McKusick, a University of California researcher who conducted the 1985 study of doctors working with AIDS.

Some care providers, aware that they were near exhaustion, have decided to take time off or to limit their AIDS practice before it showed up in their work.

“Inevitably if you’re angry, irritable, not sleeping or eating, one day that is going to translate into mistakes,” said Caiazza, who mailed his patients form letters and a list of other doctors and then left for a six-month fellowship in Europe in 1986.

San Francisco’s volunteer-based AIDS service organizations have developed strategies for coping with stress that combine New Age therapeutic tools like support groups with less formal, old-fashioned means of support.

The Shanti Project, where Marta Ashley works as public affairs coordinator, has more than 450 volunteers providing one-to-one support to AIDS patients, and it requires each volunteer to attend a small weekly support group where members discuss their feelings about their work.

Feelings Brought Out

Some organizations here begin each staff meeting with each member “checking in” about his or her feelings. Still others have instituted periodic daylong staff retreats that are part business, part relaxation and part discussion of feelings about the work.

“People who do openly deal with their feelings of being overwhelmed or of fear are the ones who stay on as volunteers,” said Douglas Victor, a volunteer coordinator for Shanti. “It’s the people who shut down about their feelings that I find leaving us.”

But formal, therapy-influenced approaches to stress have worked much less successfully among health professionals. Staff support groups were a part of San Francisco General’s AIDS ward from the beginning, but have had mixed results.

“I personally find the support groups wonderful--if I don’t have to feel that half of me is out on the (ward) floor and half is in the support group,” said nurse Linda Maxey. “You have the groups, but you don’t have extra staffing for the nurses to go. It’s hard to sit in a group knowing that patient call lights aren’t getting answered or that work is backing up.”

Personal Issues

Physicians in particular have been reluctant to discuss personal issues arising from AIDS work with their colleagues, according to mental health professionals in the AIDS field.

“When we organized the support groups, the physicians tended to ignore them, including myself,” Volberding said. “The usual physician’s reaction to support groups is ‘We can do anything, including controlling our own stress.’ ”

More useful than support groups, Volberding suggested, are “concrete things, such as how many hours you work, how many patients, how sick are the patients.”

Other health professionals here have suggested shifting the burden of AIDS care to a larger number of doctors, with fewer AIDS patients per doctor, or developing closer working relationships between psychologists and doctors.

“It’s not how long you’re doing the work, but the number of AIDS patients you take care of,” Dilly said. “You can only listen to so much without your own defenses getting whittled away.”

Affects Self-Image

In the long run, working with AIDS may cause some shifts in the way the medical profession views itself, particularly regarding doctors’ self-images.

“There has to be a redefinition of what a physician is really able to do,” McKusick said. A doctor must change “from the person who’s going to ‘fix it’ to a strategic adviser with limited knowledge in a situation where there is limited knowledge available.”

But in the meantime, each person working in AIDS has to make his or her own professional and personal peace with what has turned out to be a much longer and larger epidemic than they had initially guessed.

For some, that means switching jobs within the AIDS field. For others, that means leaving the field--and hoping others will come along to replace them.

“A lot of us really began with the feeling that we would see this epidemic through to the end,” Maxey said. “We were committed to being there for the duration, but the duration is taking on a whole new meaning. People are starting to ask, ‘Can I do this for the rest of my life?’ ”