Closer Encounters
Medical advances that extend the lives of patients with chronic illnesses provide opportunities for nurses to help them manage their conditions

By Heather World
January 22, 2003

When people discover that Yolanda Segura, RN, works at Texas Children's Cancer Center, they often tell her she must have the hardest job in the world.

"I hear that all the time, but it's not as morbid as you'd think it would be," said Segura, who has worked on the oncology unit at Texas Children's Hospital for 10 years.

One patient suffered a relapse of leukemia when she was 17. The girl endured a round of chemotherapy that sent her into remission. Next, she underwent a bone marrow transplant, but she developed complications that kept her in the hospital for months.

Segura met the girl when she started coming in for checkups, which started as weekly visits that gradually dropped off to annual trips. These days, the young woman is back on the cancer unit, this time on the other side of the needle-working as a nurses assistant, Segura said.

"Working with chronic kids, you get to see outcomes," Segura said. "It's very rewarding to know I am making a difference in somebody's life and to see them overcome the disease."

Medical advances in leukemia treatment mean that more of Segura's patients leave the hospital and go on to send their high school graduation invitations, wedding and even baby announcements.

She and other nurses who work with chronically ill patients are on the cusp of an evolving field. Science has added years to the lives of people who have diseases including leukemia, lung cancer, diabetes and HIV. For nurses, these medical developments mean they need to provide even more-and often complicated-services for their patients.

Treatment turnaround

Joan Schneider, RN, works with HIV patients at Sister Mary Philippa Health Center in San Francisco's St. Mary's Medical Center. She has seen a turnaround in the ability to treat her people since the mid-1990s, when antiretroviral therapy became available.

"It's pleasant to see patients do well as opposed to being admitted to the hospital and going downhill and losing them," she said. Instead of watching her patients die, Schneider sees them getting older and becoming prone to the same diseases as the rest of the aging population, such as high blood pressure.

A patient on antiretroviral medications-the drug cocktails prescribed to people with HIV who have low T-cell counts-is treated no differently than any other patient facing newly diagnosed illnesses, she said.

The only medical difference between her patients and those who do not have HIV, she said, is that the clinic is extra vigilant in checking for potential problems in its patients who have a low T-cell count, such as giving biannual Pap smears to women to check for cervical dysplasia, for example.

Because Schneider's patients get well, they require more help with social service issues. The nurses work with social workers to help clients make the transition back into healthy living, which includes getting off disability payments, locating new housing or finding psychiatric resources.

Geriatric patients with chronic illnesses face similar issues. Rebecca Johnson, Ph.D., RN, directs the Center on Aging at the University of Missouri Sinclair School of Nursing.

"Reimbursement of hospital expenses has gone down for older adults, so they're not in the hospital as much," she said.

When they move home, someone needs to teach the patient and family members about how to care for someone suffering multiple diseases. Education and experience make nurses especially suited to teaching older adults how to stay healthy, said Johnson, who is also a professor of gerontological nursing research and public policy.

"One thing we do well is monitor and manage chronic illness," she said.

Nurses are trained to watch for negative reactions to the myriad drug combinations that older patients must take. Furthermore, Johnson said, nurses are adept at looking at a patient's social network to identify a support system of family and friends who will help when the nurse isn't present.

Team players

To help patients find needed support, an increasing number of nurses working with chronically ill patients find themselves part of organized case management teams. These teams smoothly lead the patient through the discharge process. Working together, nurses and social workers not only act as liaisons to the insurance company, but they also educate patients and their families about care at home. They can set up a network of support that includes counseling, nutritional guidance and physical therapy.

Alison Faust, RN, assesses the needs of patients ready for discharge from the University of Colorado Hospital oncology unit. She can devote more attention to setting up resources for her clients, like physical or occupational therapy, because she has two partners in a case management team.

One, a utilization nurse, polices the patient's condition to make sure it meets insurance criteria for hospitalized care. The other, a social worker, organizes the less common but more complicated discharges, such as when a patient is sent to hospice or a nursing home.

The system works well not only for patients, but also for their families, Faust said.

"The families can be so overwhelmed," Faust said. "They don't know who they can talk to and who has all the information." The patients may live longer, but as a result of living with cancer they need more visiting nurses, more equipment and more hospitalization for pain management, she said.

Faust works closely with a team of social workers who visit her discharged patients. She briefs Cheryl Volmert, MSW, and Priscilla Ingebrigtsen, MSW, on the patient's medical condition, so they can anticipate some of the eventual problems a person might face.

"There are a variety of side effects to treatment that can crop up," Volmert said. Many of these issues can be resolved before something truly dangerous happens. "A lot of what we do is preventive. You don't want the patients to be rehospitalized."

For example, if an elderly patient suddenly has mobility issues, the social workers scramble to find in-home care, often working with the insurance company to secure the money. Or they arrange for a physical therapist to find ways to make a home safer for the patient.

Now that patients are living longer, at-home care often is given by spouses, Volmert said.

"We do see many frail elderly who are facing their death at a later stage in life than they might have in the past, and there are some unique challenges," Volmert said. For example, an 85-year-old man may have as his primary caregiver his 80-year-old wife. "There are a lot more supports we need to plug into the home if the family has determined to keep the patients at home," she said.

Volmert said the nurses and doctors appreciate social workers' ability to take on some of the day-to-day responsibilities for patients.

"A lot of them have been clinging to the doctors and nurses because of their anxiety," she said. "If you plug in good emotional support for these people, they use the medical resources more appropriately."

Mixed blessing

Faust knows firsthand that medical advancements are a double-edged sword. Because it is a teaching hospital, University of Colorado Hospital offers a range of experimental drugs and protocols, many of which do lead to a longer-though not always better-life, she said.

"The technology sometimes draws things out, and sometimes it can be very good," she said. "Other times it puts a lot of stress on the patient and family."

Even when a patient is in pain and his condition looks hopeless, he and his family will look to the doctor, she said. Sometimes hospice care may be the best option, but people often assume hospice is an option only for the final, dying days.

"It is better for someone to go on to the service before they're on their last breath so we can provide them with the opportunity to experience life," said Bonnie Topper, RN, a certified hospice and palliative care nurse with Hospice of Michigan. "It's not entering a prison. I have discharged patients who are doing well."

Although nurses who work with the chronically ill may see patients discharged, they also battle the stress of seeing those who don't recuperate. When asked about the burnout rate on her unit, Segura laughs. The average seniority at Texas Children's Hospital is two years. Only three of 20 nurses have worked there longer than Segura's 10 years.

Nurses who stick it out find solace in support groups, even if those groups are merely informal chats in a co-worker's office.

A more organized group therapy worked well for the nurses at Texas Children's Cancer Center, Segura said. She remembered one six-month period when the unit averaged two deaths a month.

"We were at each other's throats," she said. An assistant director suggested that a psychologist come to conduct a therapy session with the staff, which allowed the nurses to cry and show emotions they had bottled up for months.

Subsequently, the nurses have met with a chaplain every couple months. Segura said the last session began with nurses writing out their thoughts about deaths on the unit and ended with the chaplain blessing their hands with water and a prayer. Such rituals, she said, have a healing effect.

Contact Heather World at H_world@yahoo.com