Diagnosis and Preparing Patients for Their Oncology Consultations

Abstract

When a patient is diagnosed with cancer, it is an overwhelming experience. There are a multitude of appointments, tests, consults, and treatments that the patient and family experience to achieve the best outcome. This chapter, through case study examples, highlights the role of the oncology nurse navigator (ONN) in helping patients navigate the complex healthcare system and decrease barriers to care. The role of the ONN is multidimensional. They are often the point of contact for the patient and family throughout the cancer continuum. ONNs serve as an advocate for patients and families providing education on their disease, including treatment options, side effect management, and resources. They facilitate multidisciplinary communication, provide support, and help connect patients with community resources.

Appendices

Case Study 1

7.1.1 An Adventure Out of the Oncology Nurse NavigatorComfort Zone

• Penny Daugherty 

Objectives

• To illustrate the dynamic role of the oncology nurse navigator (ONN) beginning at diagnosis and enlarging to encompass caregivers, the community, and the hospital system

• To reveal the fragility of all involved in the many nuances of the continuum of the cancer experience

• To include education of the hospital system offering a template for what we as ONNs in all disease sites can achieve

• To provide an introduction into the ambience of a lesbian family as well as the commonalities that we all hold as intimate needs

7.1.1.1 Introduction

This case study chronicles the experience of a 49-year-old lesbian woman who was diagnosed with triple-negative breast cancer (TNBC). She was in a 30-year committed relationship, which included two teenage children. It highlights the role of the oncology nurse navigator (ONN) whose site-specific specialty was gynecologic oncology patients but was requested to provide navigation by an administrator at her facility. The ONN is a seasoned (39 years) oncology nurse who had experience with breast cancer patients in her former, longtime role as a research coordinator, so she viewed this request as an opportunity to enlarge her current boundaries. She requested and received support and assistance from the lead breast ONN at the hospital.

7.1.1.2 Background Situation

Chelsea is a 49-year-old woman who came to the cancer center for her annual screening mammogram as she’d done for the previous 5 years. As an Ashkenazi Jewish woman, she was familiar with the commonly known risk of both ovarian and breast cancer, but she was mildly annoyed at having to take time away from her work as a corporate attorney for a very large Atlanta company. Her life partner of 30 years, Lee, was also of Ashkenazi Jewish descent and had urged her to be a positive role model for their two teenage children.

As she would later relate to the ONN, she came to the breast cancer center for her mammogram irritated at the 30-minute waiting time and was even more exasperated when after the mammogram she was told there were some “suspicious spots” noted and an ultrasound was needed, another absence from her professional life. The ultrasound revealed the same mass, and so the next step was a biopsy, and the results confirmed the presence of cancer.

The ONN called her later the same day as the biopsy results had been shared with her, and Chelsea would later say that all she remembered of that conversation was “I am your nurse navigator and going forward, we will work everything out together. I promise.”

The ONN explained to Chelsea that the biopsy identified her cancer as grade 3 invasive ductal carcinoma that was negative for estrogen receptors (ER), progesterone receptors (PgR or PR), and human epidermal growth factor 2 (HER2). Initially, Chelsea was pleased at all the “negative” receptors and asking if this meant less treatment. The ONN tried to give Chelsea a detailed definition of “triple-negative breast cancer (TNBC)” but sensing the anxiety in Chelsea’s voice, as well as her inability to repeat information, she asked to set up a face-to-face appointment with someone in her family who could help process the information. Chelsea replied she could bring her partner. The ONN noticed that the patient’s face sheet indicated that she identified herself as married and it indicated her husband’s name was Lee; the ONN asked Chelsea if she was referring to Lee, and Chelsea replied affirmatively. The ONN agreed to a time the following morning and Chelsea introduced Lee (who was a woman) as her husband. To get some background and to understand the sudden structure change to their relationship, the ONN asked them both to share a little about their life. They jointly talked about having been together since college and in the past 2 years had formalized their marriage in Florida (where it was a legal activity). They talked about wanting to have a family after they’d both completed college and how they had chosen a friend as a sperm donor, planning to eventually have two children and, in fact, had twins, a boy and a girl, presently 16 years old.

The ONN went on to re-verbalize the definition of TNBC and also the rationale for testing for breast cancer susceptibility gene (BRCA) germline mutations as well as utilizing next-generation sequencing (NGS), also known as massively paralleled sequencing, which has enabled a detailed characterization of the molecular underpinnings of breast cancer, which has identified recurrent gene mutations or copy number aberrations (CNAs) among the different subtypes, and some of them are currently followed as potential therapeutic targets [1]. She gave them further details about treatment sequencing, explaining that given a choice of potential treatments for Chelsea, neoadjuvant (prior to surgery) chemotherapy might be selected [2]. She also briefly mentioned the importance of genetic testing and counseling but shared with her that due to the absence of individual BRCA mutations in her family, there was the possibility of false negatives and false positives [2]. This would be followed up later, but the ONN was cognizant of the stress-induced shortened attention span that both Chelsea and Lee were exhibiting as they repeatedly asked the ONN to repeat her words.

The ONN went on to explain that she would be making appointments with the breast surgeon and also a reconstructive plastic surgeon the same day. She also arranged an appointment with a medical oncologist who specialized in breast cancer. The hospital, as an accredited National Cancer Institute Community Oncology Research Program (NCORP) facility, is a Commission on Cancer (CoC)-accredited breast cancer treatment center, so all services were available on the main campus, with the goal of offering comprehensive care to all patients with cancer, including imaging, diagnostics, radiation, surgery, state-of-the-art clinical trials, and chemotherapy. The ONN also suggested that both Lee and Chelsea seek out the integrative modalities offered at the Cancer Support Community (CSC) such as meditation, Reiki, tai chi, and yoga—all of which would serve to ease stress and promote relaxation.

The ONN observed that Lee and Chelsea held each other’s hands very tightly during this conversation, and she reached over and lightly covered both their hands with hers and told them, “We will do this together and I will be with you every step of the way.” Chelsea and Lee would later say that they mutually embraced this conversation and felt that their ONN was “going to guide us safely to the other side of this terrifying experience for our whole family.”

The ONN went to all appointments with Chelsea and Lee and sat with them after each appointment to answer any questions that came up. She gave them a hospital-provided binder that included information about all available services as well as a weekly diary for patients/caregivers to take notes. The ONN would review their notes with them each week in the infusion suite, and they were instructed to call her as needed with any questions and/or concerns. The ONN also suggested to Lee that she keep a journal as well since she was supporting Chelsea and needed the support of her own thoughts [3].

It was decided that dose-dense doxorubicin coupled with cyclophosphamide followed by weekly paclitaxel and followed by surgery would be the course of treatment for Chelsea. This would be tailored around Chelsea’s work schedule and Lee, who had her own business, would be the designated driver to chemotherapy sessions. The ONN provided both verbal and written information regarding the possible side effects of this chemotherapy regimen such as nausea and vomiting, lowering of blood counts (and the resultant possibility of infection), neuropathy, and alopecia, and advised them both to maintain close contact with her to assist in dealing with side effects. She also set up Chelsea with the hospital’s American Cancer Society navigator to proactively plan for a wig, as Chelsea had expressed concern about meeting with clients after losing her hair.

The ONN discussed the children’s emotional needs and suggested a program at the local Cancer Support Community (CSC) as well as a very active breast cancer support group, also at the CSC. Chelsea and Lee took the contact information to follow up with, and the ONN also reached out to the CSC program coordinators and gave them a synopsis of Chelsea and Lee and their family. The CSC Executive Program Director was a lesbian, in a similar relationship, and as a licensed clinical social worker (LCSW) a mental healthcare professional who provides psychological counseling, as well as many of the practical aspects generally related to social workers. She offered to meet with and counsel Chelsea and Lee. The ONN mentioned this to Chelsea who was very interested in going forward, so a contact was initiated. At first Lee was very resistant to “exposing her personal life” to a stranger, but the ONN spoke with the CSC Executive Program Director who endorsed and encouraged the ONN to share her lifestyle commonalities with Lee as a means of encouragement, which she did. After knowing this, Lee expressed that she was “much more comfortable” with the meeting and felt it was beneficial to their relationship and also for their children, since she expressed that they were all experiencing a great deal of stress and fear. The ONN felt that this was a positive step at emotional pre-habilitation for this family [4].

After several meetings with the CSC Executive Program Director, the ONN asked both Chelsea and Lee for their feedback, and they both verbalized that this was a positive experience for their family and had reduced some of the stress in their personal relationship.

The ONN began to attend the weekly Breast Multidisciplinary Conference to enhance her current knowledge of breast cancer treatment as well as demonstrate to the breast cancer physicians that she was functionally involved in the navigation needs of Chelsea and her family.

When the ONN visited Chelsea and Lee at the infusion suite during treatment, some of the nurses expressed to her that they were unsure how to dialog with same-sex couples, especially regarding questions related to intimacy. The ONN appealed to the Operations Director of Oncology and offered to do a PowerPoint presentation to all the nurses on intimacy, and he agreed. The ONN queried all patients who were in same-sex relationships to get their feedback about issues they felt were important, neglected, and/or ignored. She also reached out to the lesbian, gay, bisexual, transgender, and queer or questioning (LGBTQ) community, soliciting their feedback about their unmet needs, and was astounded at the expressed gratitude that this education would be provided to nurses.

When the PowerPoint was completed, he provided an opportunity for the ONN to present this education to all the oncology nurses, which she did, complete with handouts including extensive references, positioning diagrams, demonstrations of sexual devices, various emollients, and a list of certified sex therapists in the metropolitan area. This list was compiled with the assistance of Ann Katz, PhD, author of many of invaluable sexuality books [5, 6].

The ONN also benefited from the work of Mandi Pratt-Chapman, MA, Director of The George Washington University (GW) Cancer Institute, and her extensive education regarding the needs of the LGBTQ community [7].

Many of the nurses provided feedback that this had been enlightening and demystifying enough to them that they felt that they could begin a therapeutic channel of communication with their patients. They would later report newly successful conversations they’d been able to have with patients.

That initial in-service became an integral component in the education of all new nurses in an extensive internship provided by the hospital, and feedback has been overwhelmingly positive to this inclusion.

This education related to the needs of the LGBTQ community has also become an inclusive and mandatory component of the core competencies for navigators at the hospital, including the viewing of selected presentations from AONN+ as well as National ONS Congress podium sessions [8, 9].

The ONN was asked by Chelsea how she could regain some sense of control and purpose to her life as she went through treatment. She inquired about diet and lifestyle changes in terms of exercise. The ONN gave Chelsea information about the special diet for TNBC, which was researched extensively by several medical oncologists working with breast cancer, most notably Dr. Ruth O’Reagan at the University of Wisconsin [10]. The ONN gave Chelsea the names of Dr. O’Reagan and Dr. Vince Cryns to research since she had noted that Chelsea expressed eagerness to participate in her care by researching and understanding the details of each facet of care. Chelsea told the ONN that thoroughly researching everything was her “M.O. after years of law school.”

Chelsea researched the low methionine diet and reported to the ONN that she was going to begin a new diet strategy based upon her newly found knowledge that there is evidence that cancer cells grow less robustly and sometimes undergo cell death (known as apoptosis) when deprived of methionine, which is an essential amino acid.

The ONN connected Chelsea and Lee with the hospital-certified oncology dietitian, and they worked out a viable, nutritionally sound diet that was plant-based, eliminated red meat and was also instrumental in helping Chelsea lose the 15 lbs she had gained during her chemotherapy treatments.

Chelsea had also researched the positive connection between exercise and fighting cancer, and the ONN gave her some scientific articles that supported this, which encouraged Chelsea to join the hospital-sponsored gym on campus, and she began a committed regimen of aerobic and cardio exercise, which she did 5–6 days a week, exercising an hour a day. She told the ONN that in the beginning it was very hard to make this commitment, but Lee and her two teenage children joined her in the rigorous routine, and it had measurably lessened the stress they had all been experiencing. Chelsea also said she felt a sense of control over her life and also a sense of purpose that she felt had been “slipping away” since the beginning—with the diagnosis, the treatment, and the fatigue she experienced—which for her had been very frightening because she considered herself a high-energy person prior to her diagnosis [11].

At this point, Chelsea is in remission. She is aware of the high possibility of recurrence with TNBC, but she has embraced her “new and improved” lifestyle, and she and Lee regularly attend the TNBC support group at the CSC, as well as participating in the integrative modalities offered there, Reiki and meditation, and her children have also invested themselves in these activities.

7.1.1.3 Challenges

Not all stories have a happy ending, and most stories are told when there is an ending, recurrence, metastasis, or death. This is a dynamic story—as all our stories are, and the learning experience for this ONN was to work within each moment each individual need and, when faced with a deficit in staff knowledge and understanding about the discreet needs of individuals in the LGBTQ community, to provide empathetic education to practitioners so that they might enlarge their scope of awareness in order to provide the most efficacious care to all who depend on us to guide them through each treatment and help diminish the stress to them and to their loved ones.

7.1.1.4 Opportunities

As navigators, we have a myriad of opportunities to educate and guide our patients and those who love and care for them through their cancer experience, actualization, and treatment. As we “connect the dots” for patients, we have a valuable potential role in navigating our colleagues through education—to expand their boundaries of empathy and successful care for multicultural families. When a need is identified, whether it be patient-centric or staff deficit, the potential is ever present for us to be leaders in education in our multidisciplinary team.

7.1.1.5 Implications for Stakeholders

We are all stakeholders as we interact with each other and know that we each are interchangeable, given an emergent and unexpected set of circumstances, so we, as navigators, have the privilege as well as the responsibility to visualize and implement every moment of our lives as a best practice to take to and share with each other. This is the commitment we embrace when we humbly and proudly identify ourselves as navigators, and so we must intrinsically seek opportunities to be the mainstay of education wherever it is needed so that all are served in the circle of care, empathy, and compassion.

Case Study 2

7.1.1 Pediatric Osteosarcoma Patient

• Paula Sanborn 

Objectives

• To highlight the important role of the oncology nurse navigator (ONN) in pediatric cancer care

• To understand the challenges of navigating a pediatric patient through the cancer continuum

• To describe the new pediatric osteosarcoma intake process and referral bundle to multidisciplinary team specialties to improve patient outcomes and quality of life

7.1.1.1 Introduction

This case study narrates the story of an 8-year-old girl presenting with osteosarcoma. Piper will be cared for at a designated comprehensive cancer center by the National Institutes of Health (NIH) and a member institution of the Children’s Oncology Group (COG) where she will be treated by the sarcoma team, which includes a pediatric sarcoma specialist (pediatric oncologist), a pediatric sarcoma advanced practice nurse, the sarcoma nurse navigator, a social worker, a pediatric surgical oncologist, and a pediatric orthopedic oncologist.

7.1.1.2 Background

Piper had a history of 3 months of right leg pain and achiness with slight knee swelling that went away with cold therapy. Piper had visited her pediatrician for the complaint of pain three times over the past 3 months, and her mom was instructed to give her ibuprofen at night for a diagnosis of growing pains. Piper injured her leg in a soccer game that initiated increased right knee swelling and pain that awakened her at 3:00 am. Piper’s mom noted increased swelling of the right thigh and immediately took her to a small tertiary hospital close to their home. An x-ray of her right femur and right knee was obtained and revealed an aggressive heterogeneous sclerotic and lucent lesion with moth-like appearance, measuring 10 cm within the right distal femoral diaphysis and metaphysis. The emergency physician contacted the children’s hospital Physician Consult Transfer Center (PCTC) that is available 24 hours a day for consulting services, and was connected with the oncologist on call. The oncologist on call instructed the physician to discharge Piper if her pain was well controlled and instructed them to not allow her to ambulate until she is evaluated by an orthopedic surgeon, and they would be contacted in the morning with a follow-up plan to see an orthopedic surgeon. The oncologist on call contacted the ONN via email with patient information and x-ray reports. The ONN obtained patient information through Piper’s electronic health record (EHR), obtained the images of the femur and knee x-rays, and reviewed them with the orthopedic oncology surgeon and pediatric sarcoma oncologist. An MRI of the right femur and a CT of the chest are ordered, and an appointment with the orthopedic oncology surgeon is scheduled for the next morning following NCCN guidelines for staging of the osteosarcoma patient [12].

The sarcoma ONN contacts the family, introduces herself, explains her role as their partner in their upcoming journey and that she will meet them in the radiology department prior to Piper’s tests, and gives the family her contact information to call with questions or concerns. She explains the MRI and chest CT and their implications and gives them directions to the radiology department and the orthopedic oncology surgeon’s office. The ONN does an initial screen for transportation needs and notes the family does not have any at this time. Part of the intake process for the ONN is getting to know the family up front and making a connection to help guide them through the most difficult time in their lives when their child is diagnosed with cancer. During their conversations, Piper’s mom is tearful and states they are all very scared, and that they have two other children to whom they don’t even know where to begin to explain to them about Piper’s condition. The ONN reviewed with mom that the hospital has a psychosocial team that will help them tell the siblings and Piper about her cancer in a developmentally appropriate way. Mom reports she is worried they have no insurance, she was recently laid off from her job, and she and dad have recently separated. Piper, mom, and her siblings have recently moved to a small apartment about 2 hours from the hospital, and dad has recently moved in with a new girlfriend. Childhood cancer is a family disease. It significantly affects the lives of the parents, their siblings, and the community [13]. The ONN lets mom know that we have a team of financial counselors and a social worker that will help with obtaining healthcare coverage for Piper. The ONN acts as a new resource for the patient and family. During their conversation on the phone, she listens, debriefs, offers support, and provides information until their first appointment with the orthopedic oncology surgeon and the pediatric oncologist [14].

The next morning, the pediatric ONN meets Piper and her parents in the radiology waiting room. Piper is tearful and holding on to her favorite blanket. The ONN greets Piper with a hug and sits on the floor next to her chair and asks her about her favorite blanket. Piper states that her grandmother had made her the blanket when she was a baby, but her grandma was gone now because she had died with cancer in her lungs. The ONN helps Piper and her parents go back to have her chest CT completed, where mom and dad were visible during the testing and could calm and talk Piper through the procedure. When Piper arrived to MRI, she was greeted by a child life specialist who asked Piper to color at a small table with other children while she waited. Piper handed over her blanket to her mom and sat with the child life specialist.

The child life specialist then went back to MRI with Piper and helped her pick out a favorite movie she could watch while her MRI was completed, explaining everything to Piper as they prepared her for the MRI. The child life specialist stayed in the MRI environment with Piper to talk with her and keep her calm. Piper’s mom and dad were also able to talk with Piper throughout the MRI to help keep her still during the exam. Child life staff members are certified professionals who are prepared at the bachelor’s and master’s level in child life, child development, and other related fields. The child life specialists are a part of the healthcare team, and they contribute to minimizing fears and stresses experienced by children, adolescents, and families as related to healthcare experiences. They support the patient’s emotional, social, and cognitive growth in the context of his or her family, culture, or developmental age. They provide age-appropriate and safe play environments, recreational events, and activities that help to enhance a patient’s understanding of medical procedures and diagnosis using age-appropriate techniques [13].

The ONN meets the family at their appointment with the orthopedic oncology surgeon and the pediatric oncologist. The MRI is reviewed with the family, and the orthopedic oncologist discusses possibilities of cancer, including the diagnosis of osteosarcoma versus Ewing sarcoma due to the nature of the aggressive lesion seen on the MRI. A PET scan to complete the staging workup following NCCN guidelines is scheduled for the next morning prior to a biopsy of the tumor [12, 14]. The family requested to go home for the night and return instead of being admitted, so they can call extended family. The orthopedic oncology team arranges for the biopsy, and the ONN contacts the family with instructions and directions. The ONN contacts the research team with the possible new diagnosis of Ewing sarcoma or osteosarcoma for possible clinical trial options for Piper. The biopsy of a possible malignant bone sarcoma is the final most important planning procedure prior to initiation of treatment [14]. Piper’s biopsy confirms her diagnosis of high-grade osteosarcoma. The ONN meets with the family in the surgery waiting consultation room with the orthopedic surgeon and the pediatric oncologist to relay the diagnosis of cancer to Piper’s mom and dad.

The oncologist reviews with Piper’s parents that her chest CT was negative for lung disease, and her PET CT scan only showed activity in her right leg; therefore Piper’s disease is considered localized. The pediatric oncologist explains osteosarcoma to Piper’s parents and discusses with them that pediatric bone tumors are rare but are the most common neoplasm in children with the most common of these bone tumors being osteosarcoma, with approximately 400 patients identified each year.

Bone cancers represent 5% of all cancers in children 5–9 years old, 11% in children 10–14 years old, and 8% in children 15–19 years old, and that osteosarcoma most commonly occurs in the long bones of the lower limbs [14]. Piper’s mom tells the oncologist that her mother and sister have both died of cancer. Her mom died of lung cancer last year and her sister of breast cancer when she was 30. Mom expresses concern that it may be hereditary. The oncologist explains that in rare cases, osteosarcoma may be associated with predisposition syndromes such as Li-Fraumeni syndrome (p53 tumor suppressor germline mutation), Rothmund-Thomson syndrome (RECQL4 gene mutation), radiation exposure, hereditary retinoblastoma (mutation in the RB1 gene), osteochondroma, fibrous dysplasia, chronic osteomyelitis, Werner syndrome (loss of function mutation in WRN gene resulting in premature aging), and Bloom syndrome [14, 15]. The oncologist explains to Piper’s parents that a genetic workup by a geneticist will be completed to include a cancer-focused patient and family history.

The pediatric oncologist goes on to explain the standard therapy to treat Piper’s osteosarcoma combines chemotherapy and surgery that consists of a limb-sparing surgery or amputation. She goes on to explain the role of chemotherapy in stopping the cancer cells that may be proliferating systemically in Piper’s body and the need to stop these cancer cells from continuing to divide out of control and spread to other parts of her body. The chemotherapy includes up-front intensive treatments including cisplatin, doxorubicin, and methotrexate for 10 weeks. This will hopefully provide preoperative shrinkage and consolidation of the primary tumor, and facilitates the resection of the tumor and limb-sparing procedure [14]. After recovery from surgery (usually 2 weeks), chemotherapy with cisplatin, doxorubicin, and methotrexate is continued for another 18 weeks and that treatment should begin within the next few days. She explains that clinical studies have shown that patients need to have both tumor resection and chemotherapy to have good outcomes [14]. Piper will need a few more tests prior to starting her chemotherapy and will have a port placed to receive her chemotherapy.

After the oncologist and surgeon leave, the ONN sits with Piper’s mom and dad. Piper’s mom is distraught and states she feels “numb.” The physical and emotional care information that the family receives at the initial appointments can become very overwhelming. It’s the role of the ONN to assess absorption of information given at this initial appointment and continually update and reteach families about their child’s disease and treatment options [14]. The ONN discusses the chemotherapy Piper will receive and the plan for Piper to get a port placed. The ONN has brought two teaching notebooks and reviews with mom and dad what a port looks like and how it’s accessed [16].

She explains the side effects of doxorubicin and the possible short-term or long-term effects of cardiomyopathy, and that Piper will need a baseline EKG and echocardiogram prior to her first dose, and then she will be monitored throughout her treatment regimen for any changes in her heart function [17]. The ONN also explains the chemotherapy drug cisplatin, and that it can cause changes in Piper’s hearing and that she will need a baseline audiogram prior to receiving her first dose, and will have subsequent retesting throughout therapy to evaluate for hearing loss [18]. The ONN lets Piper’s parents know that she will arrange for her audiogram, EKG and echocardiogram, and admission for a port placement and initiation of chemotherapy.

As the pediatric ONN goes back to the surgery recovery area with mom and dad, Piper is awake and crying. She asks her mom and dad immediately upon approaching if she is going to die. Developmentally, she understands the word cancer as death because it is associated with the loss of her grandma and aunt. The ONN and Piper’s parents explain to her that her cancer is different and there are medications she can receive to help kill the cancer. School-age children are capable of conceptual thinking in combination with concrete images. Through memory, they can navigate information about self, the problem, and an end goal. Before the age of formal operations, children at Piper’s age are not capable of abstract thought [13]. Because most of the information about cancer and its treatment are abstract and foreign to children, the pediatric ONN must give explanations that are related to their world of experience and in simple concrete terms [13]. Discussing the chemotherapy as the medicine to make the cancer go away is concrete and to the point for Piper.

When Piper returns for port placement and admission for chemotherapy, the ONN contacts the oncology child life specialist and asks her to go to the preop area to see Piper and show her what a port looks like with “chemo duck.” Chemo duck is a stuffed animal that has a port along with a dressing and tubing that can be flushed. Chemo duck has a book that talks about why he needs his port and how it gets accessed for his chemotherapy. Upon arrival to the preop area, Piper’s mom states that she told Piper her hair would fall out and she was concerned about what that would look like. The oncology child life specialist quickly ran back to her office and returned with Ella, a friend of Barbie who is fighting cancer, is bald, and has a few different wigs from which to choose. Piper is excited to open the box and immediately talks about which color wig Ella will wear. Play enhances the educational opportunities for children of all ages [19].

After arrival to the floor, the pediatric ONN meets with Piper and her parents, answering questions or concerns prior to her chemotherapy initiation. The ONN strives to initiate family-centered care regardless of Piper’s parents being divorced. She gives them both teaching notebooks and materials, and ensures that they both receive the information. The foundation of family-centered care is the understanding that the family is the true expert in the care of their child and the primary source of strength and support [20].

The pediatric ONN ensures consults are sent through the “new patient bundle,” which includes a fertility consult (to be completed prior to chemotherapy initiation), social work, psychology, palliative care team, recreation therapy specialist, child life specialist, art therapy, music therapy, massage therapy, pastoral care, genetics, and the school liaison.

The social worker evaluates for financial barriers and helps Piper’s parents apply for healthcare assistance and community resources. She helps mom and dad problem solve childcare as a team due to their recent divorce. Security was called in the surgery holding area when dad’s new girlfriend showed up. Guidelines for visitation were discussed and documented for dad’s girlfriend. The pediatric ONN and social worker collaborated with mom and dad to discuss boundaries of the girlfriend’s visitation to limit additional stress to Piper and the rest of the family.

Piper and her family met with the pediatric psychologist to assess for emotional functioning individually and as a family unit. Piper expressed concerns about the fighting and not wanting her parents to fight more since she was sick. Piper felt it was her fault that her parents were fighting. Piper practiced biofeedback to help her learn to calm herself when she felt anxious or upset about her parents or her cancer. The psychologist also met with Piper’s parents and her siblings to help in their adjustment of their new journey into the world of pediatric cancer. Piper’s siblings are both afraid that Piper is going to die. The ONN engages them in helping to hold Piper’s hand during access or counting during the cleaning of her hub prior to medications [21]. By engaging them in Piper’s care, they find a way to cope and help their sister.

Piper’s mom is also worried about Piper not being able to attend school. The ONN assures mom that a consult was initiated to the STAR program. The STAR program has a schoolteacher on the oncology floor to help patients stay on top of their schoolwork. The school liaison meets with mom and Piper and explains that she will communicate all information to Piper’s school and work on getting her a tutor. The ONN encourages mom to contact the school to find out if her teacher will allow Piper to Skype into the classroom weekly to stay connected to her peers. The school liaison will also arrange to visit Piper’s school and explain to the children in Piper’s classroom that Piper has cancer, and she will leave a bear and backpack on Piper’s chair in the classroom while she is absent and going through treatment.

On the second day of Piper’s admission, the ONN found Piper in the playroom, playing games with other pediatric cancer patients and the recreation therapist.

Piper is engaged and laughing. She reports she was feeling a “little yucky” this morning, but she didn’t want to miss play group. Piper has experienced art therapy where she said she got to “hang out” with Mary, the art therapist. During her art therapy session with the art therapist, Piper not only created an art project, but she ended up expressing her fears and concerns about being made fun of when she loses her hair [19]. Piper also enjoys music therapy when she gets to learn to play the drums or guitar. She verbalized it makes her laugh when her dad covers his ears, and that making loud music is fun. Music and art therapy are effective in promoting socialization by increasing interaction, verbalization, independence, and cooperation. It can enhance the patient’s relationship with hospital staff in developing a sense of trust and decrease isolation during the hospital stay [22, 23]. To help control Piper’s nausea and vomiting, massage therapy has been consulted. Massage therapy helps control chemotherapy-induced nausea and vomiting [24]. It also helps patients relax. The ONN also gives Piper’s mom and dad a tour of the parent resource center where they can go to relax, exercise, get a haircut, and even get a free massage twice a week.

The sarcoma team collaborates with the palliative care physician and a physical therapist who meets the osteosarcoma patients at initial diagnosis to start preparing them for their upcoming surgeries, while the palliative care physician works with the oncology team to manage Piper’s side effects [25, 26]. These members of the team will stay with the patient from diagnosis through their surgical intervention and after therapy to help them regain their precancer state.

Palliative care helps prepare the patient for their upcoming limb-sparing surgery or amputation by prescribing gabapentin 2–3 weeks prior to their surgery and then escalates doses during the acute phase [25]. Piper’s mom had also requested a referral to integrative medicine to review other therapies they could use. The pediatric institution does not have an integrative medicine practice, and when the ONN contacted the collaborating adult hospital, they would not take Piper as a patient due to her age. The ONN contacted the palliative care physician and nutritionist to see mom jointly to discuss aspects of nutrition and other modalities of care. The physical therapist works with the patient and family, regaining strength and as much functionality as possible prior to surgery. The same physical therapist sees them the day after their surgery to start working on rehabilitation with a goal to achieve their highest functional status to permit them to return to their role in society and hence enjoy dignity and improved quality of life [26].

Piper and her family have a lot of questions about the limb-sparing surgery, including limb salvage, rotationplasty, and amputation. With the consent of Piper and her family, the ONN arranges for patients and their parents who were treated for osteosarcoma and had a limb salvage, rotationplasty, or amputation to meet Piper and her family. After meeting these three families, Piper decided she wanted to have the rotationplasty surgical procedure. This procedure involves resection of the lesion in accordance with good cancer surgery guidelines, and then a rotationplasty of the Van Nes type is performed. The ankle then functions as a knee joint, and the final result is a below-knee amputation rather than a high above-knee amputation with functional results [27]. After Piper decides on the rotationplasty surgery, the ONN arranges for her to meet another 10-year-old osteosarcoma survivor who has the rotationplasty and is very active and plays basketball and softball.

During Piper’s first hospital stay, her bedside nurse contacted the ONN to let her know that Piper was refusing to take her oral medications. Mom also reported she had never really had to take pills prior to her diagnosis, so she was not surprised. The ONN contacts the child life specialist and requests they work on pill swallowing with Piper during her admission. The child life specialist has a “Mario” game of pill swallowing where the candy pills are of varying sizes, and at each level, Piper gets a prize. Prior to discharge Piper was at level 3 of the 5 levels, and was very excited for her next return to the hospital to work on getting to level 5 of the pill swallowing game.

The ONN met with both mom and dad and completed discharge education including signs and symptoms of anemia, neutropenia, and thrombocytopenia; who and when to call with questions, concerns, or fevers greater than 100.5 around the clock; mouth care regimen; tips for controlling nausea or vomiting; and treatment for constipation. The ONN also reviewed the treatment calendar and upcoming schema. The ONN picked up the prescriptions from the pharmacy and had the parents write both the generic and brand name on the medication bottles; then she reviewed each medication’s dosage, purpose, schedule, and side effects. She had both parents repeat back the medication list. Lastly, the ONN had both parents practice taking Piper’s temperature with a Tempa•Dot. Parents of newly diagnosed pediatric cancer patients require specialized education in order to care for their child with a newly diagnosed cancer [28]. The Children’s Oncology Group Family Handbook for Children with Cancer is utilized as the teaching guide for newly diagnosed pediatric cancer patients [16]. It is essential that families understand the basics of their child’s disease, what to expect from their chemotherapy and biotherapy, how to recognize adverse side effects, what is considered an emergency, and how to seek help [14].

Upon discharge, the ONN takes Piper and her family to the outpatient Hematology/Oncology Clinic and the Outpatient Hematology/Oncology Infusion Center for a tour. The ONN reviews what to expect during her next clinic visit and chemotherapy admission. Piper becomes anxious and begins to cry when discussing having her port accessed. The ONN takes Piper to the treatment room and allows her to place lidocaine cream on both her “chemo duck” and Ella, Barbie’s friend with cancer. Prior to Piper’s first return to the clinic, the ONN contacts the child life specialist and Piper’s psychologist and lets them know when Piper is coming, so they can be present to help support and distract Piper during her first port access. The ONN communicates patient information through all team members to provide seamless care for the patient and family. This enhanced communication among healthcare providers builds relationships within the team and directly enhances the patient experience [14].

At Piper’s first clinic visit to have a physical exam and labs drawn, the ONN reviewed Piper’s lab results with mom and dad, including how to calculate the absolute neutrophil count (ANC). She discussed the possibility of needing blood or platelet transfusions between her chemotherapy admissions. Piper’s mom verbalized to the ONN that she is concerned about the distance they will be driving, but she does not want to have Piper treated anywhere else. The ONN discusses the possibility of mom taking Piper to an outside cancer clinic in their area for transfusions only. The ONN collaborates with a local outpatient clinic and arranges for orders for transfusion to be sent to the clinic. When Piper required blood or platelet transfusions, she was able to stay closer to home and not travel 2 hours to the pediatric institution. The social worker also provided transportation resources, including gas cards and mileage reimbursement to the family.

7.1.1.3 Challenges

This case study presented many challenges for the pediatric ONN. The pediatric patient can be difficult to navigate due to their developmental stage and their inability to understand information and treatments. Fear of the unknown can lead to anxiety and ultimately poor outcomes. The family’s marital discord was a challenge in trying to keep communication open and effective when caring for Piper. The distance to the pediatric center was over 2 hours and posed a problem for the family in an emergency or when she required weekly transfusions. Not having an integrative medicine practice within the pediatric hospital and the adult hospital not willing to see Piper due to her age were a challenge in meeting the family’s request for integrated care. Keeping communication effective with the orthopedic oncology team in preparing Piper and her family for upcoming surgery and keeping their team uptodate in her progress with chemotherapy can be challenging.

7.1.1.4 Opportunities

Piper and her family presented many opportunities for the pediatric ONN. Utilizing the entire psychosocial support team to help Piper and her family adjust to treatments, port access, taking oral medications, dealing with chemotherapy-induced nausea outside the realm of medication, and utilizing the wonderful world of play, art, and music helped Piper adjust to her cancer diagnosis. Collaborating with the palliative care physician and nutritionist to jointly see Piper’s mom to discuss integrative medicine avenues when there was no integrative medicine available was a benchmark event for the ONN. Finding an adult oncology infusion center that was willing to administer Piper’s transfusions as needed was a huge undertaking and collaborative approach to helping overcome the difficulty of the long drive to the pediatric center. The ONN invites the orthopedic oncology surgeon and his staff to all weekly sarcoma team meetings and sarcoma tumor boards, and she attends the Orthopedic Oncology Clinic when sarcoma patients are being seen to improve communication between the teams. The physical therapist and the palliative care physician also attend this clinic to create a multidisciplinary clinic for the patient and family.

7.1.1.5 Implications for Stakeholders

As oncology nurse navigators in the pediatric or adult cancer journey, we are all given the opportunity to make a difference in both the patient and their family’s lives. In our day-to-day interactions, we have the best opportunities to include dignity, respect, collaboration, and information sharing. The value of our position is that we are committed to making the cancer journey for our patients and families a journey filled with purposeful intentions and a patient experience that is filled with our full attention and engagement. We are the “git 'er done” people in our workplace, and we own it. Patients and families value our coordination in care and truly getting to know the patient that in downstream revenue, we are able to triage and manage patients effectively and efficiently and decrease ED visits and missed appointments. “It takes a village” is a great alternative expression for the ONN role. We are not number one. We are just “the one” within a community of the multidisciplinary team who collaborates, communicates, and advocates for our patients tirelessly to make their journey as personal and patient centered as possible.

Case Study 3

7.1.1 When the Patient Is Your Friend

• Margaret Rummel 

Objectives

• To highlight the important role of oncology nurse navigators (ONNs) in the care of patients with colon cancer

• To understand the challenges ONNs face when navigating patients between an academic cancer center and local oncology providers

• To describe the boundaries that ONNs must keep when navigating patients who are friends

7.1.1.1 Introduction

This case study is the story of a 74-year-old male with newly diagnosed colon cancer who received treatment at two local cancer centers as well as an academic medical center (AMC). It will focus on the challenges faced with being treated at three institutions and the importance the ONN played in his care. The patient was a close friend of the ONN, which posed challenges when the ONN was asked to give advice as a friend and outside her scope of practice.

7.1.1.2 Background

AV presented to his local physician with bowel changes. He described narrow malodorous stools and occasional blood in his stool for the past few weeks. He stated he had noticed the bowel changes over the past 6 months. He had no other symptoms such as weight loss or fatigue. He put off going to the physician as he was helping to care for an elderly parent and just did not put it high on his priority list. His last colonoscopy was 11 years ago and showed diverticulosis. AV is a very healthy and active gentleman with an excellent performance status. Family history includes a brother with leukemia in a complete remission and his 98-year-old father with a history of skin cancer. His mother died in her 80s of an unknown cancer. There is no family history of colon cancer or polyps. Past medical history includes rotator cuff repair, hernia repair, diverticulosis, and melanoma in situ removed from his abdomen in 2015. AV is married with a wife and two children. He owns a videography business.

He was worked up locally and his colonoscopy showed a mass at the rectosigmoid junction. The biopsy showed adenocarcinoma. It was at this point that AV reached out to his friend who is an ONN at a large AMC to help obtain a second opinion. The ONN knew that this would be a challenging case as AV and his family had been friends for over 30 years and were like family. The ONN offered to connect AV with the GI navigator who would be better suited to meet his needs, but he was adamant that he only wanted his friend to help him. The ONN knew this would be difficult, and she would rely on her GI colleagues for direction since she rarely navigated GI cancers.

The ONN spoke with AV and obtained a history and asked that he send his records for review. AV’s goal was to be seen by a multidisciplinary team to discuss all his treatment options, including clinical trials. He had many questions regarding his diagnosis. His ONN provided education about adenocarcinoma and explained that adenocarcinoma is a cancer that develops in the lining of the colon or rectum. It starts in the cells that form glands making mucus to lubricate the inside of the colon and rectum. This is the most common type of colon and rectum cancer [29]. AV seemed satisfied with this answer, and his ONN told him she would provide more information when she met with him.

The ONN arranged for a multidisciplinary consult with GI surgery, medical oncology, and radiation oncology all in the same day. AV lives over 2 hours away and it was important to have all appointments on the same day, so he could make an informed decision about his treatment.

The ONN met AV and his family and went with him to his consults at his request. He had a sigmoidoscopy at his GI surgery consult, and the pathophysiology of his disease was discussed. He needed additional testing for staging to determine if his disease had spread locally or was systemic. An MRI and CT scan of the abdomen and pelvis was ordered as well as lab work. The physician explained that if the tumor was locally advanced, then the standard of care was neoadjuvant chemoradiation prior to surgery. If the disease was metastatic, then the treatment would be chemotherapy. There was also a possibility that if the tumor was in a specific location above the peritoneal reflection, then it would be treated as colon cancer and surgically resected prior to other treatments. At his consult he asked about a genetic predisposition for his colon cancer. The physician and ONN explained that based on his history, there was no indication that his cancer was hereditary and that he did not need genetic testing.

His ONN reinforced the above plan of care and provided additional education regarding his testing. The ONN scheduled his tests and reviewed the schedule and test preparation with AV. The tests would be done at the AMC, as the multidisciplinary team felt it was better to have all his initial testing done at one facility with experts in all areas that just focus on GI cancers. AV was in agreement with the plan.

Next he met with radiation oncology. The radiation oncologist discussed the role of radiation therapy in his care and that he would need staging results to further determine an individualized plan of care as discussed with his surgeon. The ONN provided basic education on radiation therapy but would discuss further once staging was complete and the type of radiation therapy was determined. AV expressed a desire that if radiation therapy was needed, he be treated closer to home. The ONN offered to help facilitate this once his testing was completed and the stage of his disease was known.

AV met with the medical oncologist who reinforced the discussion that occurred at the other two consults but also discussed chemotherapy options with AV. Again, based on staging he will most likely need chemotherapy. The exact plan was deferred until staging was completed.

The ONN met with AV and his family and reviewed the next steps in his care. AV also asked about the possibility of getting chemotherapy locally if needed. The ONN stated she could also help with this once his case was reviewed at tumor board and the final plan was determined. AV left with a plan and all his current questions answered. The ONN kept in touch with AV to be sure things were moving according to plan.

AV’s staging workup was completed, and his case was presented at the GI multidisciplinary tumor board. He had a T3N1 (stage III disease); his chest CT showed small pulmonary nodules, and his MRI of the abdomen/pelvis showed extramural tumor extension and regional lymph node involvement in the presacral region. Tumor board recommendations were for chemotherapy followed by chemoradiation and then surgery [30]. AV was called with the test results, and his ONN then called to discuss his goals of care and to confirm where he would like to get treated. The ONN had an extensive discussion with AV and addressed his many questions. AV wanted to be treated closer to home, so they discussed options for the many local facilities he could go to. AV decided that he would be treated at the local cancer center that was affiliated with the AMC. It was close to his home, and the affiliation could help make the transition of care seamless. The ONN sensed some uncertainty from AV. She asked some more questions and that was when he asked, “What would you do if you were me? Tell me honestly as my friend, would you go through with this?”

The ONN paused and said that each person has to make the decision that they feel most comfortable with and that she would support him through the informed decision-making process but not tell him what she would do if she were in his position. She explained that the teams’ recommendations were based on evidence-based practice and that it was the standard of care for his disease stage. AV asked how the team decided on the best treatment options for him. She explained that the NCCN guidelines provide the best evidence at the current time based on research and clinical data. She explained that these are regularly updated to reflect changes in clinical practice [31]. She answered his many questions and encouraged him to further discuss with his family and care team before moving forward to be sure he was comfortable with his decision.

AV’s wife called the next day and asked more questions. She also asked what the ONN would do. The ONN gave the same answer to AV’s wife as she did to AV the previous day. His wife articulated the difficulty with making this decision and said that it felt like they are on an “emotional roller coaster” as AV and his wife are also caring for an elderly parent as well as helping their two adult children. The ONN provided support and encouraged them to take advantage of resources at the cancer center where he will be treated, assuming he agrees to treatment. AV and his family were very anxious, and the ONN had the impression that AV and his wife felt that their friendship would provide them with 24-hour access for questions/concerns, and she was right. AV called or emailed the ONN many times during the next few days including off hours, with multiple questions. He was upset when he did not get an immediate response. The challenge for the ONN was to be supportive and helpful but to set limits and maintain professional boundaries, which were a difficult proposition. It was important for the ONN to establish healthy boundaries with AV and his family. She had a frank and difficult discussion with AV and his wife to establish the expectations of the relationship and explained that it was important for AV and his family to take ownership of his care with the support of the ONN [31]. It was important to the ONN that she not over-navigate AV as this would enable an unhealthy relationship. Sometimes as an ONN it is just easier to do things for the patient but that does not foster a therapeutic relationship or empower the patient to advocate for himself. AV needed to step up to the challenge [32].

During the discussion, the ONN outlined the boundaries on when to call or email and the expected time frame for a response. She provided the hours for AV to call as well as the on-call number for questions/concerns after hours. She also provided a list of colon cancer resources for AV should he need them. AV called the next day and decided on chemotherapy locally as the first step in his journey. His ONN connected with the GI ONN at the affiliated facility and was able to set him up with a medical oncologist who would administer the recommended FOLFOX (oxaliplatin with fluorouracil [5-FU] and folinic acid) chemotherapy regimen every 2 weeks for 4 cycles [31]. She provided education regarding his chemotherapy plan and discussed that he would be getting a port in his chest to receive his chemotherapy. She provided port teaching, and AV was happy with this plan as he did not want to get repeated peripheral sticks for his chemotherapy. This would be done locally. The ONN discussed his case with the GI ONN and did a handoff regarding his care. The two ONNs would continue to work collaboratively as AV’s journey was far from over, and they shared how to manage his anxiety so that the teams were being consistent in the messages AV would receive. His AMC ONN called to confirm the plan and provided information about the medical oncology appointment. She then did a warm handoff to his GI ONN at the affiliated facility. She assured him she was not abandoning him as he was upset that she would not be “navigating” him. She explained to him that she would still be his ONN but that for the next 8 weeks his GI ONN would be better positioned to answer his questions and assist him as his treatment was local.

AV received four cycles of FOLFOX and returned to the AMC for his restaging scans as requested by his team. He saw the surgeon for a repeat sigmoidoscopy. The restaging scans and sigmoidoscopy showed an interval decrease in size of the rectosigmoid carcinoma with residual area of mural semi-annular thickening and decreased size of pelvic lymph nodes. There were no new sites of disease in the pelvis.

AV and his family met with the AMC ONN again at this appointment to move forward with the next step of the process, which was chemoradiation. The AMC ONN’s discussion with AV was that he wanted to get his radiation (XRT) locally but at a facility other than where he was receiving his chemotherapy. His reasoning was that his wife heard very good things about the radiation physician, which influenced his decision on where to get his radiation therapy. The new challenge for his AMC ONN was to coordinate radiation treatment at a third facility that was not affiliated with either of the other two facilities, while he continued chemotherapy with his current oncologist. AV was agreeable with this plan and understood that he would be traveling daily for radiation at one location and then go to another location for his chemotherapy. The AMC ONN encouraged him to get his radiation at the local cancer center but he refused.

The AMC ONN contacted the ONN where AV wanted to receive XRT to help coordinate his radiation consult. Once again, she set the limits with AV and told him that his radiation ONN would be his point person for XRT-related questions and toxicities. His AMC ONN provided extensive education about what to expect at his radiation consult and reviewed the plan as she understood it. Basic patient educational materials were reviewed with AV, and his questions were answered. The plan was for him to receive 28 fractions of 3-D conformal radiation therapy along with concurrent chemotherapy. This type of radiation therapy shapes the radiation beams to match the shape of the tumor. It targets the cancer while sparing healthy tissue [33].

His plan was neoadjuvant chemoradiation with infusional 5-FU. He was scheduled back at his local cancer center to discuss next steps of concurrent chemotherapy to be done with his radiation. His AMC ONN provided education regarding his chemotherapy and expected toxicities such as nausea and vomiting, low blood counts, and risk of infection. This was important to reinforce with AV as he helps care for his elderly parent and is around his young granddaughter who goes to day care. She provided some written educational material and confirmed that his GI ONN and oncologist would review it in more detail when he met with them to start the second phase of treatment.

The AMC ONN coordinated with her ONN colleagues between the three facilities to be sure that AV had seamless transitions in care in the next steps of his journey. She wanted to be sure that all his ONNs were on the same page and that we were all communicating the same information. The three ONNs spoke often to keep the lines of communication open.

The AMC ONN kept in touch with AV, and he did very well throughout his chemoradiation. He continued to work out at the gym several times a week. His main complaint was that he was more fatigued than usual but he felt that his exercise helped him stay “centered.” He also complained of some occasional diarrhea and peripheral neuropathy. The AMC ONN encouraged him to discuss these side effects with his oncologist.

He completed the second phase of treatment and returned to the AMC to discuss the final step in his treatment, which was surgery. He met with the surgeon and had a repeat sigmoidoscopy and scans. His scans showed no evidence of abnormal FDG uptake in the rectosigmoid colon and no evidence of FDG-avid locoregional or distant metastatic colon cancer. AV called his ONN at the AMC to share the results and to also ask questions about his upcoming surgery such as did he need surgery and if there were other options available. He admitted to his AMC ONN that he was scared about the side effects of surgery and the effect surgery would have on his quality of life (QOL). He verbalized that despite all he had been through, his QOL was very good for a 75-year-old man, and he was not sure he wanted surgery. The AMC ONN encouraged him to keep his next surgical appointment to review his options and then make an informed decision.

It was discussed with AV that the standard treatment of locally advanced rectal cancer with neoadjuvant therapy is usually followed by resection (low anterior resection in this case) [30]. In the event of a complete clinical response, he can consider a watch and wait strategy of close surveillance rather than oncologic resection, but that is not the standard of care. The risks and benefits of LAR including intraoperative and postoperative complications were discussed with AV. He was very concerned about change in bowel habits as well as the possibility of a colostomy. After an extensive discussion about the risks, benefits, and alternatives, AV decided to proceed with surveillance only. He asked about clinical trials, but he did not meet the eligibility for any current trials. He stated he understood the risks of waiting including development of local invasion and metastatic disease. It was explained to him that if he should have a recurrence, there is a chance he will need a more invasive operation. The AMC ONN confirmed the plan with AV as well and reviewed his recommended surveillance schedules [30]. At his 3-month follow-up, AV’s scans showed no changes. He reports that he feels well and is spending quality time with his family and is continuing to work.

7.1.1.3 Challenges

This case study presented many challenges for the ONN. It was difficult navigating a friend whom the ONN felt took advantage of their friendship. It was hard to set boundaries, and he may have been better served by the GI navigator but he refused, leaving the ONN with the challenge of navigating and advocating for him to be sure he received the very best care. This was in spite of the fact that the ONN was not familiar with GI cancers. Other challenges included keeping the communication channels open between all three treatment facilities and giving AV consistent messages throughout his disease trajectory. His ONN supported him with his decision to not undergo surgery even though she knew that surgery was the standard of care.

7.1.1.4 Opportunities

This patient also presented many opportunities for the ONN. As a disease-specific navigator, it served to expand her knowledge and skill set with another disease site. It also allowed the ONN to build relationships with new navigators and to develop a list of colleagues whom she could call on in the future. The ONN learned the value of setting boundaries and expectations early in the patient relationship and providing consistent messages. This case study showed the value of navigation for oncology patients in helping to facilitate the best care possible throughout the disease trajectory in several different locations.

7.1.1.5 Implications for Stakeholders

ONNs are uniquely positioned in our role to coordinate care for our patients. ONNs are able to see the “big picture” of the plan and identify early on issues that may impede care. ONNs are the “lynch pin” to getting patients and families through treatment. Critical thinking skills are paramount to the ONN role, and creative thinking often helps keep patients on track as we think outside the box. We practice patient-centered care, and the relationships we develop with our patients and families are the core of our practice. We are able to keep patients on track as well as within the healthcare network, thus keeping downstream revenue within the system. The power of our role is the ability to get things done and build a vast network of colleagues that can help at a moment’s notice.