We recognize that a diagnosis of cancer can be a life-changing event, with the journey from diagnosis to survivorship, and perhaps to end-of-life care, filled with fear, challenges, and uncertainties.1-3 The value of patient navigation provided by a highly experienced, knowledgeable, and compassionate oncology nurse can best be described by sharing comments and stories from patients who were fortunate to have been connected with a cancer nurse navigator (CNN) as their cancer journey began.4-6
Being connected to and supported by a CNN when newly diagnosed with cancer creates for the patients and families a profound sense of security and safety and helps to decrease fears and anxiety, thus allowing patients to effectively hear and process the tremendous amount of information coming at them.2,3 Informed and personalized decision making becomes more comfortable as the CNN begins to outline what patients may experience as well as serve as their guide to support their unique journey. Having a CNN shepherding a patient’s care across the continuum using the clinical expertise embedded in an evidence-based nursing practice is paramount to assure excellence in service and to optimize a patient-centered experience.1,7-9
We all know that long after treatment is completed, and again as cancer survivors’ care is ongoing, patients remember how we treated them, how we made them feel, and how we treated their family and/or loved ones. Imagine the sense of comfort that patients treasure, knowing that they are personally connected to a CNN who, as their comments illustrate, made their experience so memorable, an experience that will not be forgotten. Because this experience and connection were so powerful, one can reasonably assume that patients realized a deeper and more meaningful sense of hope and healing, enabling them to move forward with living beyond cancer, always mindful that the connection with the CNN would continue. The CNN is readily available and will, at defined intervals, follow up to address the patients’ needs and concerns and provide encouragement to optimize whole-person well-being.
The literature is robust in outlining the definition and value of providing patient-centered care.10,11 Likewise, most, if not all, healthcare organizations today tout a care model that embodies patient-centered care. Interestingly, when reviewing what organizations define as patient-centered care, there is some consistency; however, most often significant variation exists, which likely results in patients having a different experience depending upon where their care was provided and by whom.
A nurse navigation program has the potential to be recognized as the hallmark model for patient-centered care. The principles of patient-centered care as outlined in 1993 by Gertels and colleagues10 and in 2001 by the Institute of Medicine4 are embodied in a nurse navigation program. CNNs partner with patients and families through the care continuum, respect and honor patients’ values and preferences, coordinate and integrate care, provide information and education, ensure that communication is seamless, evaluate and intervene to provide physical comfort and emotional support, and coordinate care transitions and continuity of care.
To ensure this patient-centered care model is provided consistently to every patient regardless of where navigation begins, it is imperative to standardize the role of the CNN, with a consistent job description, standards, competencies, and educational preparation.12 The intent of standardizing the CNN role is to define an evidence-based model with the most important dimensions of care outlined in the framework to ensure that patients are evaluated consistently for care needs that the evidence has identified as making a difference. Key dimensions of care, including patient education, advocacy, identifying and removing barriers, psychosocial management, and navigating and coordinating care across the continuum, have an impact on patient outcomes. The intended outcomes can be measured with confidence and validity only when the navigator’s role and key interventions are provided to every patient regardless of disease state. The degree of care is dependent upon the individual needs of the patient and family, with the CNN having the expertise to assess and plan the care needs accordingly. By having a consistent framework, organizations can measure, quantify, and validate the impact of the navigation program.
Data that demonstrate return on investment speak to administrators. We are aware that administrators support navigation programs in theory; however, they are aware that these programs are expensive and must be justified, thus the need to drive consistency in practice.
As reiterated in recent literature, the variance in navigation programs and lack of standardized procedures continue to challenge researchers in this field of study. Identifying key components relevant to effective navigation programs is essential.13 There is also a gap in comparing patient outcomes prospectively between patients who do use navigation services and those who do not use or have access to navigation services. Again, this has merit only if variance in the role is eliminated.12,13
Likewise, nursing clinical practice must be evidence based, with a clearly defined and outcome-driven, measurable clinical pathway. Data must include patient satisfaction and, more importantly, quality-of-life (QOL) outcomes due to the interventions of the CNN. Using a tool such as the National Comprehensive Cancer Network distress thermometer to evaluate distress at defined intervals would be invaluable in identifying patient stressors that need to be managed to impact QOL positively and ensure whole-person care.3,14,15
By being standardized and evidence based, the navigation model will accelerate in terms of need and demand for the following reasons. Patients today are seeking out cancer programs with CNNs because they have heard from family or friends or perhaps on the program’s Web site about the role of the CNN, and they want to have a navigator with them to support and coordinate all aspects of their care. As administrators want to differentiate their cancer programs from competitors, grateful and loyal patients singing the praises of the CNNs will result in increased administrative support for a navigation model. Second, a consistent navigation model will support excellence in the patient-centered experience and could serve as the prototype of coordination for accountable care expectations. Finally, cancer care accrediting bodies such as the Commission on Cancer are incorporating standards that outline expectations for patient navigation.7 In the Cancer Program Standards for 2012, standard 3.1 outlines expectations for the patient navigation process. This standard must be fully implemented and will be surveyed in 2015. By providing standardized, evidence-based care, organizations will satisfy the accreditation requirements, most likely with commendation.
Ever mindful of the resource challenges we are all facing, grateful patients oftentimes become generous donors to an organization’s foundation. Cancer patients often wish to “give back,” and do so in many ways, eg, volunteering or serving on a patient advisory council. Many times we miss a golden opportunity to ask for a charitable donation to the foundation as tribute to the excellent cancer care received because of the CNN. We also have the opportunity to share patient stories that will touch the hearts of those who may not have been touched by cancer personally but wish to become a donor to support a navigation program because of the positive impact it has on patients and families.
Patient stories and comments are powerful and compel us to pursue the development of navigation programs. The following story, titled “The Nurse and the Navigator: I Should Have Known,” was written by a breast cancer survivor. The story captures poignantly the sole purpose this paper is intended to convey: every patient deserves to experience a patient navigation program, through a consistent, standardized, evidence-based clinical practice, delivered by an experienced, knowledgeable, and compassionate oncology nurse. As you read this story, take note of how the author describes the soul-touching difference in her experience because of the CNN and the care team. I have read her story many times, and each time my emotions are triggered in yet another way that draws me to the absolute reason we need to have navigation programs in every cancer program, to best serve the patient in providing whole-person care.
The Nurse and the Navigator: I Should Have Known
You see, I should have known. I’m a nurse and worked with cancer nurse navigators. I should have known. Here is my story.
On a fateful Friday afternoon, Dr W., a radiologist, saw me after a second mammogram and asked if I wanted to do an ultrasound with biopsy that very afternoon because he wanted more information about what he saw on the mammogram. I wasn’t particularly alarmed because with a history of fibrocystic breast disease and many negative aspirations, I merely thought this would be another procedure that would turn out negative. However, I watched his eyes and the monitors and saw the expression in his eyes change as the big black spots appeared on the screen. I knew that something was amiss. As he took the biopsies from the middle of the blackness, my thoughts began to turn to the possibility that I soon could be one of those 1 of 8 women who have the diagnosis of breast cancer sometime in their lifetime. He asked if I wanted to be called on Saturday when the information came in or wait until Monday. Of course I opted for Saturday.
My husband had no idea of what had been happening that afternoon. When I recounted the events, I concluded with, “I won’t be surprised if the diagnosis is cancer when Dr W. calls tomorrow.”
The call came at 8:30 Saturday morning. Dr W.’s message was, “I have some good news and some bad news. Which do you want to hear first?” I opted for the bad news, which was that the biopsy was positive for cancer. I honestly have no memory of what the good news was. I couldn’t hear over the roar of the diagnosis of cancer. He said he’d contact Dr K., a breast surgeon, and I could talk with her immediately about treatment options. I thanked him, held myself together until I could hang up, and then my husband and I hugged and cried. Immediately I went into my denial mode, thinking that of course it was detected early because I’ve had regular mammograms, and everything would be simple.
By Monday, I was driven to get the treatment started immediately. I called the only person I knew who could help me, Jean McD, Director of Cancer Services, and told her I was coming to see Dr K., the breast surgeon, immediately. Jean asked about setting me up with a cancer navigator and I said absolutely No!! I wanted to see the surgeon TODAY, and I wanted to get treatment started immediately. Jean knew just what to say to me, and what to do. While I was driving to the Women’s Center, I was trying so hard to say the words “I have cancer” out loud, without crying. I knew I needed to hold myself together to talk to people and to get help. I yelled, whispered, hit the steering wheel, and probably scared off drivers on 94 West who had to assume the woman in that car was crazy. And they would have been right!
When I got to the Women’s Center, Pam L., a cancer nurse navigator (CNN), intercepted me, took me back to her office, and began to scrape me off the walls and ceiling to talk with me about my findings and possible interventions. Pam magically found 2½ hours to be with me that day to talk through what the journey could be like and what I needed to know to take the first baby steps. At no time did Pam ever get flustered, or act as if she had anything else to do that day. She was interrupted, exited for a few minutes, and came back, as if I were the only patient in the world that day. Her knowledge of cancer and of how she could best handle me and my reaction was so calming and caring. At the end, she asked if I needed to see Dr K. that day or Tuesday. Dr K. was at another hospital but would come over later in the afternoon to see me if I couldn’t wait until Tuesday.
I opted for Tuesday, because I was in a good space after talking with Pam, and she had given me lots of things to think about to organize my questions when I met with Dr K. the next day.
I should have known. As a nurse, I should have known that nurses are there to do the caring and the physical/psychosocial support, and to educate patients so they can better care for themselves. I did know that; but in my drive to quickly get this destructive creature out of my breast as soon as possible, I wanted to see the surgeon and get moving. Pam, as a trained CNN, very gently and calmly took me under her wing and started to navigate the journey with me, as a partner. I was a much more organized and calm patient when I met with Dr K. the next day. Pam created this sense of empowerment in me that, yes, I could get through this, and she would be there as my advocate every step of the journey.
But it didn’t stop there. I was not an easy patient. Life was very complicated for me at this time, and I had no time for cancer to appear in my life. Our granddaughter was going to be born in 3 weeks. I was leaving my position and interviewing for another. And somehow, pre-op procedures, surgery, and treatment had to be shoehorned between many unchangeable commitments. Dr K. gave my scheduling problems to Pam to solve, and she solved them efficiently and always with a smile. Pam was there for my lumpectomy and subsequent mastectomy, and she listened as I complained continually about my drains!
My journey ended up being not as simple as I had told myself it would be that first weekend after Dr W. had given me the diagnosis. For example, the lumpectomy found more cancer that hadn’t shown up on the diagnostic testing, more lymph glands were involved than initially thought, and the final blow was that, after the second elective mastectomy, cancer cells showed up in the pathology report in spite of 12 weeks of chemotherapy. Pam was there for me through all of these developments. Sometimes she would call me first and let me know the unexpected results the day before I met with Dr K. Other times, Dr K. called first, followed by a phone call from Pam to make sure I understood and to help plan the next steps. Chemo had some unexpected turns. Pam was always there checking on me and working with Dr Q., a medical oncologist, and the nurses in the infusion center just as she did when surgery was the primary treatment. And she followed me through radiation. If I had faced all these unexpected outcomes alone without Pam as my navigator, I promise you I would have been overwhelmed with stress and would have come through this journey traumatized and discouraged. Today I am stable, happy, and full of gratitude for my luck in having a navigator to truly lead me through this experience.
And now that I’m through the 11-month journey, Pam and Dr K. are now starting a program for survivors to help people like me attend to the hard work of life after treatment. Dr N., my radiation oncologist, once said to me that the hardest parts of the journey are when you get the diagnosis and when the treatment ends. I am assured now that I won’t be dropped, that I will have a navigator with me for this next chapter in the journey, and that I will be a better person for this.
My sorrow comes from knowing that not all patients have access to this level of care and navigation. Thanks to Jean McD, the Director of Cancer Services, I found Pam immediately. Other patients are picked up after surgery, or when they are in an acute crisis. I know that there are not enough Pams for everyone to be helped at the very beginning of treatment, but there should be. It is only right that everyone who goes through this journey have access immediately to the careful planning, advocacy, and organization that a navigator can provide. Physicians can’t do this work alone. It takes a village. It’s been beautiful to watch the intimate teamwork that Pam and the physicians draw on to coordinate, guide, and navigate patients through the long months of treatment and survivorship.
I should have known. I’m a nurse and know what beautiful work nurses can do. But in my distress, I just wanted to see Dr K. immediately to get surgery scheduled. I didn’t know all the presurgical procedures that were necessary. I now know firsthand the beautiful work that Pam and other nurse navigators can provide to patients. I am a stronger person today because Pam was there. If she were not there, I would have fared much less well. I should have known!
In summary, a diagnosis of cancer can be a time of transformation for a patient and her family. Supporting this challenging transformation, a cancer nurse navigation program will balance the art and science of patient-centered care to ensure a sense of hope, healing, and security regardless of the outcome.
Disclosures: Jean A. McDonald, RN, MS, has no conflict of interest or financial interest to disclose. Patty Abella, RN, BSN, has no conflict of interest or financial interest to disclose.
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