Helping Cancer Patients Get the Information They Need to Manage Fatigue

May 1, 2002

LOS ANGELES-To better manage fatigue, cancer patients need clear, concise information about what to expect and how to deal with reduced energy, memory, and other cognitive functions. The challenge for oncology nurses and physicians, noted Patricia Jakel, RN, MN, AOCN, is to provide this information in a manner that is sensitive to the individual patient’s changing attitudes toward treatment and need for information at each visit. "We need to know what the patients feel and what the patients want us to communicate to them," Ms. Jakel said. She is a clinical nurse specialist at University of California Medical Center, and associate professor, University of California School of Nursing, Los Angeles.

LOS ANGELES—To better manage fatigue, cancer patients need clear, concise information about what to expect and how to deal with reduced energy, memory, and other cognitive functions. The challenge for oncology nurses and physicians, noted Patricia Jakel, RN, MN, AOCN, is to provide this information in a manner that is sensitive to the individual patient’s changing attitudes toward treatment and need for information at each visit. "We need to know what the patients feel and what the patients want us to communicate to them," Ms. Jakel said. She is a clinical nurse specialist at University of California Medical Center, and associate professor, University of California School of Nursing, Los Angeles.

Adult learning theory reminds us that adult learners forget much of what they have learned, Ms. Jakel noted. Because adult learners forget about 40% of what they have learned by 30 minutes, 60% by the end of the day, and 90% by the end of the week, it is imperative that the 10% of the message patients will retain is "really important."

Cancer patients are motivated to learn how to manage their symptoms, but may also be overwhelmed by emotions. "So the information that they retain is going to be very minimal," Ms. Jakel said. "After the first cycle of chemotherapy, the patient may be more open to recommendations for symptom management—because they’ve been through the experience."

Motivation and Deterrence

A small study (Leydon, et al, 2000) conducted at an oncology outpatient clinic in London looked at cancer patients’ information needs and behaviors. The 17 patients, who had been diagnosed with cancer within the past 6 months, all wanted basic information at the time that they were diagnosed and treated. Not all patients, however, wanted further information at every stage of their illness.

The researchers also found three predominant attitudes that effect patients’ quest for information about their cancer and its treatment, Ms. Jakel reported. Those three common attitudes were faith, hope, and charity.

Faith is the belief that the doctor knows best. Marina Lawson, a breast cancer survivor, vouched for the argument that faith could deter a patient from seeking more information. She was treated by John A. Glaspy, MD, MPH, medical director of the Boyer Oncology Clinic at UCLA and co-chair of the Fifth Quality of Life in Oncology Symposium. "I thought too much information was going to cloud my judgment," she said. "So I went by faith that what he was going to do for me was going to make me well."

"Sometimes hope was indispensable for survival—the patients really felt that," Ms. Jakel said. Hope could motivate patients to try an alternative therapy if current treatments failed. Hope could also limit the search for new information because patients wanted to avoid getting negative information. "Patients had a tendency to avoid negative information, especially around their family members because they wanted to put on a brave face," Ms. Jakel said. "Hope and fear are intertwined," she said. Patients are hopeful, but don’t want to ask questions because they are afraid of the answers.

Charity could limit a patient’s search for information because they didn’t want to take up valuable time asking about their own care when there was somebody that was sicker and needed more attention.

Gender Differences

Not surprisingly, the study found gender differences in communication styles of patients. Women valued their own and other patients’ personal experiences when making decisions. "Men believed in silence," Ms. Jakel reported. "If they avoid conversations about the disease, it wouldn’t recur, and then they didn’t have to ultimately talk about death."

Tools for helping patients manage fatigue and other quality-of-life measures can be downloaded from the National Cancer Institute web-site at www.nci.nih.gov or from www.4anaemia.com.

These tools include self-assessment forms, planning calendars, and tips for conquering fatigue (see Table 1, above). Among the tips for dealing with fatigue are dividing activities into "must do" and "should do" categories and learning to pace oneself.

A regular exercise program can help maintain or improve overall physical functioning. Keeping the mind busy is also important and patients can learn to compensate for defects in cognitive functioning. For example, Ms. Lawson said that she has problems with memory, so she writes important things down. "You can’t emphasize to your patients enough that it is a normal thing for you to forget things in an instant or forget things that happened last week," she said.

"I think it’s really important to make fatigue an education priority because it impacts everything a patient does, not just physically but emotion-ally," Ms. Lawson stated. She added that support from family members and others is also important.