NurseWeek: A New World: Nursing issues have changed since AIDS first appeared

By Chris Schreiber
May 6, 1999

While the prospects of AIDS patients have improved greatly in recent years, the range of issues with which they and their care providers must cope has increased dramatically as well.

In the early 1980s, when AIDS was as unknown to the medical community as it was to the population at large, patients would often live only a short time after diagnosis. "They’d come in on Friday, and by Monday, they’d be dead," said Richard L. Sowell, PhD, RN, associate professor and chair of the department of administration and clinical nursing at the University of South Carolina College of Nursing in Columbia.

Today, Sowell and other HIV/AIDS nurses worry less about their patients’ surviving the weekend than about managing the long-term issues now associated with the disease. "Our patients aren’t dying, they are learning how to live," said Sherrie Dunn, MSN, RN, a case manager and home health supervisor for AIDS Project Los Angeles, the country’s largest AIDS service organization. "Yes, there are clients who are dying because they can’t tolerate the medication or they’re immune to it, but our clients feel more hopeful now, and they should—there is a lot more hope."

Significant advances

Much of the hope HIV and AIDS patients cling to today involves a series of sweeping pharmacological advancements. Protease inhibitors and other multiple-drug therapies "cocktails" have reduced AIDS from a three-year death sentence to a "chronic, long-term illness," according to Connie Highsmith, RN, president of the Association of Nurses in AIDS Care.

Highsmith said that while drug therapy has improved quality and length of life for HIV and AIDS patients, it has added a complex new dimension to the job of the provider. "We have a lot more medications to treat the illness, and we have improved monitoring of the illness," she said. "But with additional medications, you get a lot more possible interactions, and that requires a lot more diligence on the part of the nurse."

While drug therapies have been successful, experts say they have led to problems of indifference about the disease. There was a 15 percent decrease in overall AIDS incidence between 1996 and 1997, and a 42 percent drop-off in AIDS deaths over that same period, according to the national Centers for Disease Control and Prevention (CDC). Since the number of new HIV infections has remained relatively stable, however, more people are living with HIV and AIDS than ever before. And the trend is expected to continue.

"People are taking [the success of the drug therapies] to mean that this is over, that we’ve solved it," Sowell said. "But a much larger population with HIV is going to have to be dealt with. The challenge is really in front of us."

Many challenges

For nurses, the challenges are many. Dramatic shifts in the patient population demographic are the most obvious. HIV infection and AIDS hit primarily in the gay community in the early 1980s, and the patients who got sick were typically well-educated white men. But the incidence rate is leveling off in the gay community. Among men who have sex with other men, the estimated number of AIDS diagnoses each year has been declining since 1993, according to the CDC. However, experts say, AIDS rates are climbing steadily among other groups, especially minorities, IV drug users, and the indigent. Many nurses say this demographic shift has been the most difficult change in the evolution of the disease.

"The social work aspect of the job has increased a lot," said Steve Keith, RN, who has been working with AIDS patients in San Francisco General Hospital’s Ward 5-A, the first dedicated AIDS unit in the world, for 16 years. "We have a lot more homeless people, and there are more IV drug users than in the early days. These are big issues that we didn’t have to confront before."

HIV and AIDS nurses today contend with multiple diagnoses, including psychiatric problems and substance addiction, Keith said. Since HIV-drug regimens are rigorous—they can call for up upward of 30 pills per day—patient noncompliance can be an overwhelming obstacle. "For many of our people, the HIV part of their illness is low on their priority list," Keith said. "Finding a place to sleep can take precedence over remembering to take their [HIV] drugs."

Ever evolving

Providers say, however, that treatment today is as good as it has ever been. So good, in fact, that many acute care facilities for AIDS patients are being closed to contain costs in favor of outpatient models, forcing nurses into different care settings.

"Mainstreaming care is not a bad way to go, though I actually think we are regressing," said Cliff Morrison, RN, FAAN, the founder of S.F. General’s Ward 5-B and 5-A and the program director for the National HIV/AIDS Update Conference. But he warned that AIDS requires a level of training for providers that is unique. "We have to be careful because oftentimes the quality of care diminishes when … there is a lack of tolerance on the part of the provider. I’ve seen both physicians and nurses who have refused to provide care. We’re still very judgmental about [AIDS]. There is a core group out there who has a very good understanding of what the issues are. But there is more confusion about HIV than there ever was before."