Asst. Prof. Rosanna DeMarco (CSON): "You can't move on the same way every again. You lose a little bit of yourself, but you get perspective. It's a horrible way to get perspective, though." (Photo by Susan Camarata)
The experience of having "a foot in two worlds," DeMarco says, prompted her to begin a study of how nurses' personal and professional lives are changed when they become cancer patients.
DeMarco and her team of researchers found that while the nurses' professional insight did not insulate them from the strain of dealing with cancer, their struggle helped them develop a deeper empathy for their patients.
"As we say in our study, cancer is not a bump in the road. Cancer is a fork in the road," said DeMarco. "You can't move on the same way every again. You lose a little bit of yourself, but you get perspective. It's a horrible way to get perspective, though."
These nurses, she said, know the shock of a cancer diagnosis, the long waits patients encounter, the feeling of unmedicated pain, the need to cry and the fears associated with cancer.
"A string is connected from your heart to the patient," she said. "You are no longer relating to patients only cognitively."
DeMarco admits that conducting the analysis of the data was difficult. "As a cancer survivor, you are always worried about reoccurrence, wondering if every ache and pain is the sign of reoccurrence. Reading the interviews, especially the interview with the nurse with ovarian cancer, was very difficult."
The study was funded by a grant from the Kenneth B. Schwartz Center, which was established to promote compassionate health care delivery. An article on the study is under review at Oncology Nursing Forum, and the researchers and their findings were the subject of a video presentation at the Schwartz Center's annual dinner at the Westin Hotel in Boston last month.
Joining DeMarco for the study were alumnae Joan Agretelis MS '95, PhD '99, a specialist in oncology nursing at Massachusetts General Hospital, and Carol Picard MS '76, PhD '98, of MGH's Institute of Health Professionals, who was a classmate of DeMarco. CSON graduate students Shannon McGratty and Lauren Sakoda and CSON undergraduate fellow Andrea Blais '02 assisted DeMarco with the analysis and manuscript.
The researchers interviewed 25 nurses, both men and women, who had been diagnosed and treated for cancer. The nurses represented a variety of health care settings, including advanced practice, emergency room, intensive care, medical/surgical, community health and school health, among others. The cancer diagnoses were varied as well, including breast, colon, ovarian and lung cancer as well as Hodgkin's lymphoma and melanoma. Most of the subjects had been diagnosed within the previous five years.
Straddling the worlds of patient and nurse was especially challenging for the nurses during treatment. Many of the nurses were treated at their own hospital, said DeMarco, and this created ambiguous feelings about their role: "'Who am I today, patient or a nurse?'"
Many nurses felt uneasy about joining a formal support group. "They were uncomfortable sharing feelings of frustration with the health care system during their care because it was part of a system to which they belonged. They also described taking care of others in the group. This caused them to further identify as a nurse and became a barrier to getting their support needs met," according to the study.
But the nurses in the study said they integrated these experiences into their professional practice and found a renewed commitment to their patients. The respondents said they could no longer disconnect from their patients after a shift as before "because of the spiritual link that now exits between the pain they know and what their patients are feeling," according to the study.
"It is as if they were transformed into precise radar screens in the process to identify and act on what is deserved at a human level rather than holding knowledge like walking textbooks of practice.
"Many nurses discussed an intangible transformation that implored them to make things better for other patients...in relation to quality of oncology care," write the researchers.
As one nurse reported: "All of a sudden I felt like I needed to be more of a patient advocate that I had been even in the past because now I knew what patients needed because I had been there."
Schwartz Center Administrative Director Marjorie Stanzler said the DeMarco team's research was sorely needed. "Surprisingly little has been published about the experiences of health care professionals facing serious illness. We thought it would be informative to see how the nurses deal with the anxiety and fear of a life-threatening illness and what lessons they learned that affected their relationships with their patients."
CSON Dean Barbara Hazard Munro, who attended the Schwartz Center event along with several CSON administrators and faculty members, said the study "reminds us we have a great deal to learn from listening to patients."
Stanzler adds that the Schwartz Center plans to distribute the video about the project to nursing schools across the country as a teaching tool.
Like many nurses in the study, DeMarco was inspired to take an advocacy role by her experience with cancer. She is a member of the Adult Patient and Family Advisory Council at Dana-Farber Cancer Institute, where she received her cancer treatment. The council makes recommendations to doctors and other health care givers about the care of patients.
She also says her experience as a patient has made her a more informed teacher. "When you can teach from the voice of experience and tell a real story, you add credibility. My students tell me that the stories I've shared have helped them remember lessons in a way the theoretical cannot."
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