Patients and their families facing the diagnosis of cancer can feel lost, uncertain, overwhelmed, and fearful of the healthcare system. The goal at the Intermountain Southwest Cancer Center is to [ Read More ]
June 2014 VOL 5, NO 3
Danelle Johnston, RN, MSN, OCN, CBCN
Danelle Johnston, RN, BSN, OCN, CBCN
From the time I was a young girl I knew I wanted to pursue a career in the “helping profession” and mix that with my love for the sciences. What that career would be was uncertain to me, but nursing found me in my senior year of high school. My high school required that seniors take a semester focused on career development. As part of the education, we were required to research professions, make a mock resumé, and participate in interviews with professionals in various career fields. I was fortunate enough to have the opportunity to interview with a physical therapist and a pediatric nurse. Upon completion of my interviews, I was selected to shadow the pediatric Intensive Care Unit nurse at Children’s Hospital Los Angeles.
I will never forget the moment I walked through the doors—I felt like I was home. As the day continued, I was taken on a tour of the hospital and exposed to the various opportunities nursing had to offer. I entered the Bone Marrow Transplant Unit and looked into the eyes of a child who was currently undergoing treatment. Words cannot fully capture what I experienced that day, but it was life- changing. I vividly remember the conversation I had with my parents after that incredible day and told them that I wanted to pursue my nursing degree after graduation and become a pediatric oncology nurse.
The journey to completing my nursing degree was full of life lessons and I was humbled by patient and family experiences in times of illness and crisis. I was very fortunate my junior year of nursing school to be hired as a patient care assistant at the same Bone Marrow Transplant Unit that called out to me 3 years prior. Following graduation, I was hired on that unit as a clinical nurse.
While at Children’s Hospital Los Angeles, I transitioned into the role of Chemotherapy Systems Nurse Coordinator. This position was created to facilitate a large-scale performance improvement initiative after a sentinel event. I led the charge to redesign chemotherapy processes and developed standardized chemotherapy order set templates to improve efficiency, clarity, safety, and patient outcomes.
This work fulfilled me and became my passion for the next 10 years. I met the love of my life, got married, and had 2 beautiful children. I recently decided to stop working for a period of time so that I could have the opportunity to be a stay-at-home mother. It was during this time I received a phone call that changed my experience with cancer forever. The call was from my father who reported that he had undergone a CT scan for abdominal pain. The scan revealed a mass on the head of his pancreas and several masses in his liver. My father was diagnosed with stage IV pancreatic cancer and given less than 6 months to live. Nothing prepares you for the sucker punch a cancer diagnosis brings. My experience as an oncology nurse working with numerous patients who were diagnosed, and subsequently treated, seemed to have no bearing as the scenario became very personal. I wanted to walk the journey caring for my father as his daughter.
The next 3 months were filled with multiple appointments and treatments and countless frustrations. On numerous occasions I needed to function in my role as nurse to mitigate issues and navigate the healthcare system. I often wondered what patients and families do who do not have the same knowledge about cancer and healthcare that I had. That thought was disheartening to me.
In the beginning, my father wanted to give treatment a try to attempt to control the disease and offer him some time, but the cancer was already so far advanced and so aggressive that the treatments failed. No one on my father’s cancer team asked him what he wanted. What were his goals and how did he define quality of life for himself? Toward the end of his courageous battle, I was the one who had the very delicate conversation with both my father and my mother. Three months after his initial diagnosis, my father passed away in his home on hospice care surrounded by those who loved him. It troubled me to know that if I did not have the end-of-life conversations with my father he would have died in the hospital and his wishes would not have been honored. I knew I could not sit silent, but rather had to step back into my profession and help change the culture of care. I did not want another cancer patient and family to have the same frustrating and isolating experiences. It was not long after my father’s death that I returned to oncology nursing with the desire to have a direct impact on patient outcomes.
I returned to work and was hired as a clinical oncology nurse for Riverside Community Hospital’s oncology program where I was instrumental in program development and quality improvement initiatives for the cancer program. I helped design and implement an inpatient Palliative Care Program. It was at this facility that I was first exposed to patient navigation. Our program developed a business plan to implement a comprehensive breast program with oncology nurse navigation.
As Coordinator of Oncology Services at St. Jude Medical Center (SJMC), I was instrumental in the development of SJMC’s successful Nurse Navigator Program. I directed the hospital’s Breast Work Group, evaluating clinical outcomes and directing improvements in program content and quality. I oversaw St. Jude Breast Center’s efforts to become one of the first in California to earn recognition from the American College of Surgeons National Accreditation Program for Breast Centers (NAPBC). I implemented a variety of effective community outreach events, reaching hundreds of women, and created a peer-to-peer cancer support program that has significantly increased emotional support for women living with cancer. Whereas the concept of survivorship became integral to my practice as a nurse navigator, I was empowered to realize my dream of offering a women’s retreat where women who were being treated for breast cancer at SJMC were invited to a single- day event where they would have an opportunity to hear inspirational speakers and peer testimonials and participate in reflective and health-related activities. This event has become recognized as one of St. Jude’s cancer program best practices. At SJMC, I helped create a coalition of Oncology Nurse Navigators within Southern California to facilitate collaboration and knowledge-sharing.
During my time at SJMC, I participated in a number of clinical research studies:
- Primary Investigator: Breast Health Education and Cancer Awareness—October 2011
- Co-Investigator: Review Outcomes During 2006-2011 of Accelerated Partial Breast Irradiation for Early Stage Breast Cancer Patients Treated at SJMC —Fall 2012
- Co-Investigator: Interdisciplinary Team Education to Improve the Care of the Cancer Survivor—September 2012-September 2013
- Co-Investigator: Community Cancer Center Launches Oncology Rehab Program Demonstrating Improved Quality-of-Life Measures—2013
- Primary Investigator: Breast Cancer Nurse Navigator Facilitating Care Transitions in Cancer Survivorship —2013
In the spring of 2013, I had the privilege of being accepted to a pilot program with Western University on Transitions in Care. This course was funded by a grant from The California Wellness Foundation in partnership with the California Institute for Nursing & Health Care and Western University of Health Sciences College of Graduate Nursing. This course broadened my understanding of care transitions and the role of the care coordinator within the community. We discussed the need for additional research around transitions in care and the role of nursing. As navigators we hold the ability to facilitate change through quality studies and publishing our outcomes to further build on current evidenced-based practices.
I have recently taken a new role at Memorial Hospital, University of Colorado (UC) Health as the Manager of Breast Services. I have oversight of our NAPBC, which encompasses the American College of Radiology, Breast Imaging Center of Excellence, oncology navigation, quality, and all aspects to ensure the standards are met and maintained. The Oncology Service Line is working closely with UC Health to elevate the program to offer patient-centered superior outcome-based care. The mission of UC Health is to “Improve lives in big ways through learning, healing, and discovery. In small personal ways through human connection. But in all ways, we improve lives.” My journey has offered me many opportunities to become better acquainted with individual patient needs and to change and improve lives, one at a time. By understanding that everyone’s journey will be different, I have become aware of the importance of understanding that everyone’s walk will bring new and different circumstances to their lives. Not only is it my role to assist the patient in understanding his or her overall treatment and the potential scenarios attached, but it is to proceed with mentoring, compassion, and a sense of humanity in recognizing his or her needs to provide the best possible outcomes.
I have been an oncology nurse for the past 21 years in various roles across the spectrum as a bone marrow transplant nurse, inpatient and outpatient oncology nurse, nurse manager, oncology nurse educator, and nurse navigator. Each role has expanded my knowledge and understanding of the patient and family experience. I am humbled every day that I have an opportunity to walk beside patients during their cancer journey and at times some of their most vulnerable moments. I view my role as a nurse as a privilege and a ministry.
I am proud to say that I was one of the early members of the Academy of Oncology Nurse & Patient Navigators (AONN+) and found this national organization beneficial to collegiate collaboration and knowledge-sharing. I have been blessed in my career to have had opportunities to work alongside as well as be mentored by leaders in the oncology field by women who have been so instrumental in my development—Kathy Pearson, RN, MS, CNS, AOCN; Mary Wickman, RN, PhD; Lillie D. Shockney, RN, BS, MAS; and Elaine Sein, RN, BSN, OCN, CBCN. I have been co-chairing the Evidence into Practice Subcommittee for the past year and strongly believe in the importance of collaboration and knowledge-sharing to further advance navigation and build evidence to demonstrate the value of navigation and the direct link it has to improved patient outcomes.
Can I encourage you to take the time to reach out to the Evidence into Practice Subcommittee by either participating in the work that is being accomplished or taking advantage of the tools and resources this committee has put together for AONN+ members? For additional information on the Evidence into Practice Subcommittee, visit the AONN+ website (www.aonnonline.org) or contact me at Danelle.Johnston@uchealth.org.
Agreement Between Patient Self-Report and an Objective Measure of Treatment Among African American Women with Breast Cancer
Background: Only a limited amount of research is focused on African American women with breast cancer and treatment adherence (TA). One potential barrier to TA may be a lack of [ Read More ]