On Call Magazine
July 24, 2007
By Helen Osborne, M.Ed., OTR/L
President of Health Literacy Consulting
Most of us in healthcare choose to do this work because we care about people and want to help others. Some call this being “other-centered.” But should illness or injury happen, and we become the ones who need care, our perspectives may radically change. To learn more about how personal experience affects professional practice, I spoke with Rosanna DeMarco, PhD, APRN, BC, ACRN, who is an associate professor at Boston College’s William F. Connell School of Nursing.
DeMarco talked candidly about her diagnosis of ovarian cancer in 1999, saying the news came as a complete surprise during a routine physical exam. After a rapid succession of tests, she underwent several forms of treatment including chemotherapy. DeMarco chose to keep working throughout this ordeal, finding her usual routine to be both normalizing and a good way for her to cope. But her work was affected, nonetheless. In fact, DeMarco says that her experience as a patient has affected all aspects of her practice as a professor, researcher, and clinician.
Dealing with disclosure
One of the first hurdles DeMarco faced was disclosing her diagnosis to others. Looking back, DeMarco likens disclosure to a ballet in which timing is everything. When do you start this conversation and whom do you tell? Is it a secret? Do you share with discretion, or tell the world? Since she had no guidelines to follow about how or when to break the news, her choice was to tell everyone including students and patients. “I had no reason to hide the story,” she says. “It was very clear. I had a wig on my head.”
While there were no clear-cut answers to the above questions, DeMarco was well aware of the implications of each choice she had to make. “When you announce you have cancer, it can affect your job, your insurance, and how people relate to you.” People reacted, she says, in a variety of ways, some more helpful than others.
DeMarco says she was comforted when people expressed caring and concern, which they did by asking questions about how she was feeling or what the experience was like for her. But other responses she found less empathetic, at times even hurtful. DeMarco still recalls a colleague who gasped when she heard the diagnosis and immediately talked about an aunt who had just died of ovarian cancer. DeMarco says a key difference between the responses is the sense of hope that came through them. When dealing with a formidable diagnosis, DeMarco says, offering a sense of hope is important, whether you are talking with health professionals or with patients.
Sharing with patients and students
In addition to disclosing to peers, DeMarco told her patients about her diagnosis, too. Then, as now, she worked at a community clinic for women living with HIV/AIDS. When DeMarco shared the news, the women openly talked with her about their own experience of illness. Together, they spoke of their common challenge dealing with a serious, life-threatening diagnosis that requires ongoing monitoring and medication. And they also acknowledged how their experiences differed. Her patients said that people diagnosed with cancer are often considered heroic, while those with HIV/AIDS may face stigma and shame.
Likewise, DeMarco talked with nursing students about her diagnosis. Ever the educator, she showed by example how cancer can affect someone’s life. She also demonstrated the importance of hope and let students witness through her recovery the benefits of chemotherapy.
Taking care of others
Being a patient forever changes how providers take care of others, DeMarco says. “I worked through the system like an automaton before my cancer diagnosis,” she says, explaining that her primary focus in patient care used to be protocols and statistics. She describes herself as having been on a “straight, narrow path,” along which patient care was primarily prescriptive. Since her diagnosis, however, DeMarco says she sees patient-provider communication as more of an open journey. The goal, she says, is not focused on protocol and statistics. “Rather, our goal is to be engaged with patients.”
One day at the HIV clinic, DeMarco recalls, she planned to teach the women a series of self-efficacy exercises, but they weren’t interested. Instead, the women asked to go to the park. “If I wasn’t a cancer survivor, I would have forged ahead,” says DeMarco. “After all, I needed to justify my precious, busy intellectual time.” But she agreed to go to the park instead. That day had far-reaching implications for the provider-patient relationship. “The women knew what they needed, and it wasn’t what I told them they needed.” Together, they experienced what it feels like to be healthy and active, and DeMarco says it was the beginning of a new kind of trust.
Taking care of yourself
In many ways, receiving a serious medical diagnosis is particularly hard for healthcare professionals. “We have too much experience and information,” says DeMarco. She wishes sometimes that she knew less about interventions and outcomes. But since ignorance was not an option, DeMarco sometimes put limits on information she was ready to hear. There were times she just didn’t want to discuss cancer staging or tumor gradation. “Statistics are just that, statistics,” she says. “Certainly, it is okay to let others know what types of information you are ready to hear, and when.”
Being both a provider and a patient is like having a foot in two worlds, says DeMarco. She has worked hard to find middle ground between the empirical world of research and that inner experience of being a patient. While she used to look at illness as just numbers and data, DeMarco now knows firsthand the value of also considering the personal story.
Ways to learn more
DeMarco, Carol Picard, PhD, RN, CS, and Joan Agretelis, PhD, RN, AOCN, have written “Nurse Experiences as Cancer Survivors.” This two-part article looks at both the personal and professional side of illness. It was published in Oncology Nursing Forum, Vol. 31, No. 3, 2004.