It’s All in a Name!

Web Exclusives —September 10, 2019

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Web Exclusives
Sharon Lieb Inzetta, RN, MS, CBCN, CN-BN, ONN-CG
Summa Health System Akron City Hospital Breast Center, Akron, OH

I’m often asked, “What do you do?” When I say a “nurse navigator,” the next question is “What’s that?” I have been an oncology nurse navigator since 2006, and it is still a challenging question to answer.

Oncology navigation is a complex role and one that the navigational scope is best defined by each individual and the system and patient population navigated. There are, however, shared standards and competencies that all navigators can embrace.

Navigation as a novice requires mentoring and identifying those navigators who best define and encourage increasing awareness for the nurse or lay navigator role.

Telling and sharing stories of navigational care are a way to help navigators feel a sense of connectedness, and to validate the navigational process and care.

It would be my good fortune, after having worked as a “novice nurse navigator” for several years (and having accrued the required hours needed to attend a navigation training program), I would attend a Navigator Educare Training Program and meet Judy Kneece. I had heard about her from my navigational mentors. They were the introductory class of navigators she would educate in 1992, before she began her national program. In the years to come, hundreds of navigators would attend one of the Educare Navigator Training Programs. It was one of those moments you always remember, hearing Judy talk about her program, the care she provided, patients whom she navigated, and the impact she had. She told the story of the comfort bears she gave to her patients. The conference was insightful and impactful, and the attendees shared tears and left with a sense of passion and motivation to do their personal best! 

In 2011, our abstract “A Professional Model for Practice: Comfort Theory and the Breast Health Nurse Navigator” was accepted for presentation at the 2nd AONN+ Annual Conference. Our navigational team was excited and honored to attend. With much support from our director and navigation manager, we had developed our own comfort bear, much like Judy’s program. Our team of navigators were filled with passion and stories of success. We had much to share and celebrate.

There are those moments in life when you can close your eyes and take a walk back in time. That feeling you felt, that joy, you want to hold on to that forever. That feeling was recalled when AONN+ Co-Founder and Program Director Lillie D. Shockney first walked on stage and told her story. It was moving, it was heartfelt, it was happy, it was tearful, it was passionate, and it was courageous. It was life-changing to know the impact of a navigator; to really reflect and challenge your role as to how you can, maybe, be just “a little like Lillie!”

Life moves in different directions, and leadership decisions often impact programming. Paths and opportunities arise, and you find yourself back at the beginning and a whole new program needs to be developed. In 2015, at the 6th AONN+ Annual Conference in Atlanta, the opportunity to “reconnect” with Lillie and AONN+ was realized. Much like traveling and the feeling of attending a church service in your affiliated religion, you feel welcomed, validated, and “connected” when you are at the AONN+ Conference. There is a sense of camaraderie and belonging that allows for renewed passion and inspiration. Hearing Lillie share her stories of navigation the second time was even better than the first time! Hearing her personal stories mixed with joy, humor, tears, and challenges surrounding survivorship were once again life- and career-changing. It validated navigation, the work we do, the lives we impact, and the bonds that navigators share.

After leaving the AONN+ Conference that year, our navigational program growth continued. It would be perhaps one of life’s greatest career moments to stand on stage at the 2016 AONN+ Annual Conference and accept the first place award in the research category for “The Breast Imaging Nurse Navigator: Measuring the Impact on Coordinated Care Delivery Results” after the first year. Sharing the stage with Lillie and Sharon Gentry was joy-filled, and it was an honor to present the navigational impact we had been able to demonstrate. My heart was filled with gratitude for the leadership and ongoing passion Lillie and Sharon provide that inspires our navigational roles.

In 2017, there was another opportunity to hear Lillie in Orlando at the 8th AONN+ Annual Conference, where she told her “bedtime stories” on the patio under the stars. It was a beautiful evening, and once again we enjoyed and heard stories of survivorship, and the importance of each individual’s “legacy.” It is how we all hope to be remembered. There was shared laughter and tears, and it was at that time a new goal was realized. As a navigator, I found myself leaving determined to develop another comfort bear program, and the “a ha” moment knowing then the perfect name for our comfort bear would be Lillie. 

My story and the impact of the first comfort bear program involved a frail, elderly woman who came to the preoperative area from her long-term care facility. She was alone, had dementia, and her eyes were full of fear when we met. As a navigator, meeting all patients preoperatively was one of our programmatic goals. After introducing myself, the patient was given our breast educational bag, a comfort pillow, and an exercise ball. Her eyes were bright, she had a big smile, and remarked it was “just like Christmas.” Then I pulled out our Comfort Bear. She had a huge smile, grabbed and hugged the bear tightly and remarked “we all need someone to love.” That statement has stayed with me throughout my navigational career. We all need someone to love, perhaps at the most vulnerable of times with a cancer diagnosis. The impact we may have, the patients and families we “touch,” the lives we impact, the navigator is there. She then added she would have to keep her bear safe when she returned to her nursing facility because someone would want to take her!

Our Comfort Bear Program honors the leadership and the ongoing legacy Lillie D. Shockney has provided to so many navigators and patients who have come to know and love her.

Her gift of self, her gift of caring, her passion, her sense of spiritual connectedness to all those who cross her path is life-changing. What better namesake for our Comfort Bear than Lillie? A teddy bear may help us remember feelings of comfort, the love we felt, and the support provided by the person who gave us that bear. That feeling of security, the bond developed, the relationship of acceptance, and ongoing support is what the navigator represents.

Our Lillie Bear is symbolic of the comfort, care, and compassion we as navigators hope to give our newly diagnosed patients with breast cancer. Those memories of stories told, the leadership, and inspiration from Judy Kneece and Lillie Shockney live on in each of us as navigators today and tomorrow. It is what Lillie has said many times: “They will always remember you and what you do!”   

The letters in the name Lillie represent: L—Listen to our patients, I—Inform our patients, L—Learn with our patients, L—Leadership for our patients, I—Interdisciplinary care for our patients, E—Empower our patients.

I had the opportunity to hear Lillie speak recently at a Survivor Conference in my home state of Ohio. It was so very exciting to think she was “right here in our own backyard.”

It was a long drive down to central Ohio, in fact, when I left that evening, there were torrential downpours and street flooding to just get on the interstate. At one point, thoughts of turning back entered my mind. It was fortuitous that the decision to go forward prevailed. It was a moving discussion, much time was spent reflecting on those with metastatic disease, life’s legacy, and our next “journey.” There was not a “dry eye” in that audience. Each of us must answer “what will be our life’s legacy?” This story had much sharing by Lillie of her father, and how cancer care was navigated and the impact of coordinating his “palliative care” or rather the preferred term “quality-of-life preservation.” The challenge for patients and how we as navigators may impact them is “don’t give cancer control.”

 I left with a feeling of “when I grow up I want to be just like her”! Each time having heard Lillie speak is truly awesome, amazing, and it always gets better and better.

There were 5 important questions Lillie discussed that we as navigators should use to guide navigational care. We should all commit these to our memory and have them act as the plan of care for our patients:

  1. How much do you know about your cancer?
  2. How much do you want to know about your cancer?
  3. What are you hoping for?
  4. What are you most worried about?
  5. Tell me 3 things that give you joy or gave you joy before you got sick.

There is something to be gained by heartfelt stories shared, insightful moments, and tears that often result as the ones shared at this conference and all those before.

On the long drive home that evening, there was a beautiful sunset. We take so much of life for granted; it was the very best way to live in that moment and be so very grateful for being here and having had the opportunity to once again share Lillie stories.

It really is a wonderful name Lillie D. Shockney, and we are honored to have our Comfort Bear share the name Lillie!

Thank you, Lillie, for continuing to “transform” the way we care for our patients by always inspiring hope and helping all of us grow as oncology navigators on our life’s continued journey, always stronger together.

For more information on the Comfort Bear Program, visit summahealth.org/Lillie.

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Last modified: August 10, 2023

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