The enormity of the task that patients have—to place their cancer experience and their journey in the context of their lives—that is so huge.
—Donna L. Berry, PhD, RN, AOCN, FAAN
The Mara Mogensen Flagherty Lecture at this year’s 38th Annual Congress of the Oncology Nursing Society in Washington, DC, focused on the importance of listening to and acknowledging the individual stories of patients with cancer and survivors. Once they are adept at listening, clinicians need to use this “sensitive ear” to improve care, said cancer nursing research expert Donna L. Berry, PhD, RN, AOCN, FAAN, Associate Professor of Medicine at Harvard Medical School and Director of the Phyllis F. Cantor Center for Research in Nursing & Patient Care Services at Dana-Farber Cancer Institute, Boston.1
Dr. Berry’s “bottom line” was that oncology nurses need to create opportunities and the proper environment for people to express themselves about their health conditions and personal journey. She stressed that oncology nurses need to be active listeners and patient advocates. Her goal as a researcher is to “ask the questions that if answered would make a difference in how oncology clinicians practice,” she said.
Experience and Context
“The enormity of the task that patients have—to place their cancer experience and their journey in the context of their lives—that is so huge,” she added.
Dr. Berry acknowledged that patients spend only a small slice of their life in the clinic. They have many identities outside of their disease. Within their communities, they are mothers and fathers, sons and daughters, workers and homeowners, and much more. These varied individualities shape how they experience cancer.
Men with prostate cancer face the difficult decision of which treatment to undergo, but professionals cannot give them an absolute medical answer about the best intervention. Lifestyle, profession, personality, anxiety, intimate relationships, and other factors come into play. Many men later regret their treatment selection because of side effects about which they may have been unaware.
Dr. Berry found that individuals of color were more likely to follow their first doctor’s treatment recommendation and not read any informational material, say, before surgery. However, studies have found that the more knowledgeable patients are, the more satisfied they are with their care. For example, those who used the Internet for additional information were more pleased with their treatment than those who did not. Accurate and accessible information relayed to patients clearly is essential, noted Dr. Berry.
For most cancers, “there are menus of options,” Dr. Berry said. “Each one has its own set of potential outcomes, and each one has its set of uncertainties. We provide informed consent. We provide public and patient education. We have reams of educational material. But do we truly help patients navigate the decision? Do we prepare them for possible outcomes? And do we honor the parts of their lives that are not with us in that clinic?”
Dr. Berry’s goal was to create an easy program that nurses could bring back to their clinics to help men with newly diagnosed localized prostate cancer pick a treatment. She and her colleagues at the University of Washington embarked upon a new study, developing an Internet-based decision-support system that could automatically generate tailored information to help men make their decision. This was a multisite clinical trial across the country.
First, participants completed an online screener with a variety of questions. They had the option to answer at home. Then, coaching was customized based on patient responses as well as race and age. The investigators concluded that the tailored intervention significantly reduced patient-reported decisional conflict compared with traditional patient education methods.
Dr. Berry noted that shrinking resources have left some nurses with little opportunity for interpersonal interaction with their patients. Emotional distress and related symptoms like insomnia often go unexplored. Technology helps patients deal with issues that are awkward to discuss. A computer “never raises an eyebrow.” Patients were given language to use so that they would feel comfortable telling their doctor their exact symptom experiences. A helpful color-coded report was generated to tell doctors and nurses how the patient was doing and where to probe further. Dr. Berry’s symptom support system, the Electronic Self-Report Assessment-Cancer has been shown to significantly increase discussion of symptoms and reduce symptom distress during cancer therapy.
Dr. Berry’s intervention not only teaches clinicians how to identify and address psychosocial and symptom issues, but also instructs patients how to engage in self-care activities outside the clinic.
“You are going to continue to dig deeper until you find out the nature of the problem that is troubling the patient outside the clinic. And you will gather your resources to address it,” Dr. Berry encouraged the audience. “I know you will, because I know you.” ■
Disclosure: Dr. Berry reported no potential conflicts of interest.
1. Berry DL: Mara Mogensen Flagherty Lecture: The patient’s voice: Are we hard of hearing? Oncology Nursing Society Annual Congress. Presented April 27, 2013.
The annual memorial lecture is named for a remarkable patient with cancer who was the “model of survivorship,” sharing her story and helping others cope with the disease. The talk always focuses on a psychosocial aspect of cancer. Since its inception, over 125,000 nurses have attended Mara Mogensen ...