Programs help patients cope with side effects
The National Cancer Act of 1971 set cancer rehabilitation as a goal and provided money to develop training programs and research projects. Soon after, the Bethesda, MD-based National Cancer Institute identified four objectives for rehabilitation of cancer patients: psychosocial support, optimization of physical functioning, vocational counseling, and optimization of social functioning.
Thirty years later, outpatient cancer rehab is an idea that has yet to take root in the day-to-day management of cancer across the country. Many of the nation’s premier cancer centers offer some type of rehab or wellness programs; only a handful of programs exist in other locations. But some providers are beginning to blaze the cancer rehab trail, and their patients are seeing the benefits.
At Saint John’s Health System in Anderson, IN, a three-year-old physical and occupational therapy-based program has improved patients’ functional performance and satisfaction by an average of 37% in fewer than eight visits. The Saint John’s staff used the Canadian Occupational Performance Measure to allow patients to rate their functional performance on a 100-point scale upon entering and completing the program.
"Can you imagine how patients feel if they are themselves rating their function and satisfaction to be that much better in usually only three to four weeks? It has been very rewarding," says Julie McCormack, PT, who led the collaborative effort to start the program between the Saint John’s outpatient cancer treatment center and the Carl D. Erskine Rehabilitation and Sports Medicine Center.
A core group of two physical therapists, two PT assistants, and an occupational therapist works with patients to decrease fatigue, nausea, and pain as well as to improve strength, endurance, general mobility, and quality of life, McCormack says. In two to three visits per week for three to four weeks, patients work on low-level endurance training, general mobility training, activities of daily living, range-of-motion exercises and strengthening, she adds. The education component includes information on energy conservation, task simplification, relaxation, and stress management.
"We found that there was a great patient need for these types of services," McCormack says. "We work in the same outpatient building as several of the oncology doctors as well as the radiation therapy department and the chemotherapy department. We were able to see the functional limitations of patients coming and going for treatments and easily recognize their need for care."
A rehab staff member regularly visits oncology patients who don’t get referrals to rehab to teach them how to help themselves through home exercise. "I can’t say enough about the ways we have been able to improve the quality of life of those we have treated," she says.
McCormack set out to benchmark with similar programs when setting up the one at Saint John’s. "We tried for a long time to see if we could figure out what programs are out there, and we just really weren’t finding programs like what we wanted to do," she says. "There are a lot of programs that include rehab on an inpatient side right after surgery, but for outpatients including physical and occupational therapy, we just really weren’t finding those."
So McCormack attended a continuing education course on cancer rehab and then jumped in. The program is individualized based on each patient’s goals for improvement.
"On the performance measure, we are finding out what types of things the patient is having trouble doing. We gear treatment right toward those top five or so items," she says. "It’s nice to know you’re affecting things that are very important to the patient. A lot of other things in physical therapy don’t correlate so well straight through to what the patient wants to do."
It takes an ongoing effort to communicate with the oncology department to encourage referrals and to break through patient resistance, McCormack says. "Part of it is the cancer diagnosis can be so dreadful. There are a lot of cases that are terminal, but there are a lot that aren’t. People don’t think of: What am I going to do to get better and get back to everyday life?’ They’re already thinking what’s going to happen," she says.
"But there’s a lot of time in between. There’s a lot of stuff going on for these patients, a lot of bad news. It almost gets to the point where they don’t want to hear anything else, that they’ve had all the information they can take." Every patient who has attended the cancer rehab program has said it was well worth the effort, McCormack says. "It’s such a common sense thing that we need to help these people," she says. "This patient population is not being serviced like it could be."
Stanford University Medical Center started a cancer supportive care program in 1999 that has a nice twist: All services are free to patients, even if they are not being treated for their cancer at Stanford. "Our belief is that adequate support and informed guidance is essential to the success of cancer treatment," says Holly Gautier, RN, director of the cancer supportive care program, part of Stanford’s Center for Integrative Medicine. "Cancer treatment is so expensive, even with insurance coverage. So many patients are not able to stay employed, and some of our patients wouldn’t even be able to afford 10 more dollars a month. I fight very hard for this to be a free program," she points out.
Donations support about half the program’s cost; the rest is funded by Stanford. Between 600 and 700 patients per month participate in the menu of classes and workshops offered at the center.
Classes include gentle exercise, restorative yoga, stress management, coping with treatment side effects, healing imagery, nutrition, and medical qigong, which incorporates meditation, breathing, and gentle movements to promote healing. Chair massages are offered in the cancer treatment waiting rooms.
An oncology nurse offers fatigue consultations. "Fatigue is the No. 1 complaint of cancer patients. Cancer-related fatigue is not something that can be corrected by sleep, so it’s somewhat of a Catch-22," Gautier says. "We really encourage them to exercise, even if it’s starting by walking to their mailbox. Many of these patients are too fatigued to take a shower, but they really need to move," she adds.
A patient evaluation found that 75% of those attending the yoga class had an increase in energy. Ninety-six percent saw some reduction in stress; 65% reported more restful sleep, and 59% had less pain. "All of these classes are looking at improving the quality of life for individuals. Once they receive a cancer diagnosis, their lives are never the same," Gautier explains. "Hopefully, we are exposing patients to new ways of coping with stress and anxiety and side effects and getting a great foundation to improve their quality of life," she says.
For more information, contact:
Julie McCormack, PT, Carl D. Erskine Rehabilitation and Sports Medicine Center, Saint John’s health System, Anderson, IN. Telephone: (765) 646-8663. E-mail: [email protected].
Holly Gautier, RN, Director, Cancer Supportive Care Program, Center for Integrative Medicine, Stanford University, 1101 Welch Road, Building A, Suite 6, Palo Alto, CA 94304. Telephone: (650) 723-4268.
Many of the nations premier cancer centers offer some type of rehab or wellness programs; only a handful of programs exist in other locations. But some providers are beginning to blaze the cancer rehab trail, and their patients are seeing the benefits.
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