Johns Hopkins Gazette: June 23 1997

Waging War On
Cancer: Fourth
in a Series
More Than A Tumor

Mike Field
Staff Writer
There's a button on Pat Grimm's bulletin board that says it all: "No, Oncology Nursing is not Depressing."

It's the perfect motto for a clinician and researcher who has investigated, among other things, the notion of hope. Moreover, 25 years into the War on Cancer, it is an apt metaphor for the challenges and the possibilities that daily confront nurses, doctors and others who care for patients and families afflicted with cancer.

"There is a change that has occurred," says Grimm, an associate professor in the School of Nursing with a joint faculty appointment in the Oncology Center. "Now there is an expectation on the part of patients and their families that quality of life issues will play a part in treatment decisions. It's no longer only a matter of tumor burden and toxicity levels; now the quality of living--especially in terminal patients--is a prime consideration."

This paradigm shift--away from a focus on tumor elimination at all costs to a more holistic approach that considers patient needs and desires as equally important aspects of cancer treatment--has led to increased research into cancer patient care issues. Grimm, a nurse-psychotherapist, coordinates the School of Nursing's Oncology Nursing Clinical Specialist Program.

"In 1981 my best friend developed ovarian cancer," she recalls of the series of events that led her to oncology nursing. "After treatment she lived another eight years before the cancer recurred. Since I was close to her, I naturally became interested in what happens emotionally when people are diagnosed with this disease."

Because cancer is so widespread across all segments of society, hardly any families escape some contact with the disease. Many people imagine they would be devastated by a cancer diagnosis, yet Grimm reports that serious depression is not typical of most patients. "Cancer is anxiety-producing and moments of feeling depressed are understandable," Grimm says. "But to become clinically depressed is atypical; those who do so are in the minority."

For most people who learn they have cancer, the greatest challenge is neither anxiety nor depression but simple fatigue. "Fatigue is the No. 1 symptom for cancer patients undergoing treatment," Grimm says, "followed by pain and sleep disturbances. The focus of my research has been on managing the symptoms of fatigue, pain and emotional distress."

Currently, Grimm is serving as co-investigator in the second year of a multicenter study that attempts to teach cancer patients how to manage fatigue and emotional distress through exercise. The study focuses on women undergoing treatment for breast cancer, employing a regimen of regular brisk walking in a progressive, self-paced program.

Using a patient base drawn from Hopkins, the Medical College of Virginia, the University of Virginia and the University of Pennsylvania, investigators hope to develop recommendations for physical exercise as a component of cancer treatment. Dr. Vicki Mock, director of nursing research for the Hopkins Oncology Center, is the principal investigator.

"We have only just completed the data collection from the preliminary year, but early results suggest that people who walk have significantly less sleep disturbance and less fatigue than the non-exercisers," Grimm says. Her work is sponsored, in part, by the fourth year renewal of her Mary Edna Busch American Cancer Society Professorship of Oncology Nursing.

The initial developmental study--which has led to a more extensive, three-year, $500,000 study--suggests that incorporating an exercise regimen with treatment when possible can appreciably improve the quality of life for many cancer patients.

"One of the sites involved is expanding the study to include men with prostate cancer, since early data suggests that men could also benefit in much the same way to an exercise regimen," Grimm says. "If you don't sleep well, the world can look pretty bleak; one of the biggest advantages of an exercise regimen may be in promoting good sleep and thus, a better mental outlook. Exercise seems to give patients a sense of control. They feel like, 'I'm doing this for myself and it helps.' There is both a physiological and a psychological aspect to treating cancer."

Grimm's clinical work with bone marrow transplant patients in the Oncology Center has led her to a new area of interest, one that reflects the dramatic changes under way in cancer treatment and health care in general. Lymphoma and leukemia patients undergoing high doses of chemotherapy and bone marrow transplants, for instance, used to spend weeks in the hospital, much of it in isolation. Today, with improved techniques and new drugs, the typical hospital stay has been dramatically reduced-- and, in the case of a prototype program at Hopkins where bone marrow transplants are done on an outpatient basis--sometimes eliminated entirely.

"Studies have shown that outpatients can do quite well without being in a critical care bed, and for the most part, the patients prefer it," Grimm says. "But if acutely ill patients are being cared for outside the hospital, are we in effect transferring some kind of burden to their caregivers, the family members or friends who will care for the patients?"

Grimm and her colleagues are conducting a longitudinal study, examining patient care and treatment at the time of diagnosis, with six- and 12-month follow-ups. "We are trying to evaluate this change in care, not only examining patient factors such as toxicity, acuity and so forth, but also looking at quality-of-life and caregiver issues. Are we transferring an undue burden to the caregivers? What is their emotional status? What is the cost for families in this new care-giving configuration?"

Ultimately, she says, many quality-of-life issues for cancer patients come down to a matter of hope, a hard-to-define concept that nonetheless seems to have a profound influence on patient outcomes. "We know that cancer patients who have a support system of family and friends who are there for them tend to do better. We know that people who have experienced other challenges--who have had some bumps before in the road of life--tend to do better. Pre-existing problems with anxiety or depression tend to get worse, while people with good internal and external resources tend to do much better. I believe that hope--which I define as a sense of the future--plays a significant role in patient outcomes."

All of which reflects the increasing acceptance among cancer researchers and clinicians of the idea that destroying tumors, while important, cannot be the only focus of the war on cancer. Patients who survive--and those who die from the disease--wish to do so with as little pain and as much dignity as possible. That is what motivates people like Pat Grimm.

"In this time of paring-down of hospital stays and increased complexity of health care, I hope the psycho-social needs of patients and caregivers alike are not forgotten," she says. "We're making tremendous strides in our ability to diagnose and treat cancer. We just need to make sure our ability to continue to offer compassion follows."

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