Navigators have an essential role in ensuring that quality survivorship care begins at diagnosis and continues throughout the balance of patients’ lives. To be able to address the needs of cancer survivors and to provide patient-centered survivorship care, it is imperative for navigators to understand the issues that cancer survivors face.
JF is a pleasant 66-year-old woman who was diagnosed with stage III non–small cell lung cancer in August 2016. Before diagnosis, she had been experiencing mild shortness of breath and fatigue. Her oncologist gave her a treatment using concurrent chemotherapy (Taxol/Carbo AUC 2) and radiation therapy over 6.5 weeks. In counseling, the nurse navigator educated JF on the possible side effects caused by concurrent chemo/radiation.
Halfway through her treatment, JF started to experience side effects from her treatment. JF and her adult son met with the navigator to discuss possible suggestions for managing her side effects. Following the meeting, JF noticed a flyer in the waiting area inviting patients to attend a survivorship lecture on “What Is Normal After Cancer.” JF was excited and expressed her desire to attend. Her son quickly responded, “Mom, it is about survivorship, and you are not a survivor yet.” JF sat silently next to her son, with disappointment clearly showing on her face.
The navigator overheard their conversation about the presentation and decided to educate both on the definition of survivorship. After explaining to JF and her son that survivorship begins at diagnosis and continues until the end of life, the navigator encouraged both JF and her son to attend the upcoming survivorship lecture. The navigator also spent some time with JF and her son after the conference to review some specifics for patients with non–small cell lung cancer.
During the session, the navigator began the discussion of JF’s treatment summary and survivorship care plan by providing an overview of both physical and psychosocial effects of diagnosis and treatment. The navigator educated JF and her son on possible late and long-term effects that someone with non–small cell lung cancer and treatment may experience:
- Esophageal stricture
- Hearing loss
- Kidney problems
- Peripheral neuropathy or numbness and tingling
- Pneumonitis or inflammation of the lung (3-6 months after treatment)
- Pulmonary fibrosis or scarring
- Trouble with or painful swallowing
Maintaining the quality of life of a cancer survivor is a key component of survivorship care. The quality of life for a cancer survivor includes their physical well-being by control or relief of acute symptoms and late effects and the maintenance of function, psychologic well-being with the ability to cope with illness; social well-being with the ability to deal with the impact of cancer on their roles and relationships; and spiritual well-being with the ability to maintain hope and derive meaning from the cancer experience.
The navigator educated JF and her son on the psychosocial issues that cancer survivors may experience:
- Anxiety or depression
- Sexual functioning
- Emotional and mental health
- Memory or concentration loss
- Stopping smoking
- Weight changes
- Physical functioning
- Financial advice or assistance
A number of lifestyle/behaviors can affect a survivor’s ongoing health, including the risk of the cancer coming back or developing another cancer. As part of the treatment summary and survivorship care plan, the navigator discussed with JF and her son recommendations for health promotion strategies:
- Alcohol use
- Physical activity
- Sunscreen use
- Management of my medications
- Tobacco use/cessation
- Management of my other illnesses
- Weight management (loss/gain)
Metrics for Survivorship/End-of-Life Domain
As with any program, evidence-based metrics are essential to measuring success and sustainability. The AONN+ metrics listed in the Table were created for survivorship programs.
Navigators have an essential role in ensuring that quality survivorship care begins at diagnosis and continues throughout the balance of patients’ lives. Throughout the seasons of survival, it is imperative for healthcare providers to continually offer the components of survivorship care in the forms of prevention through health and wellness promotion, surveillance for recurrence and screening for new cancers, intervention for management of lasting physical and psychosocial effects, and coordination of care to cancer survivors. The treatment summary and survivorship care plan provides guidance for primary care physicians, the oncology team, and other healthcare providers in the coordination and continuity of care for cancer survivors.
Navigators also play an integral role in the transition to hospice care. Navigators should advocate the use of hospice services by recognizing seasons of survival, changes in a patient’s quality of life, and understanding that patients may have end-of-life tasks to complete. Serving as the patient’s advocate, navigators can help support the patient and family by providing resources for end-of-life legal and financial planning and by making sure that the patient’s voice is heard concerning their goals for treatment and quality of life.
The authors remind all members of AONN+ to view the modules for the survivorship/end-of-life domain on the website. The authors also encourage members of AONN+ to post items regarding the competencies and best practices for survivorship/end-of-life care on the AONN+ website discussion board.
The authors can be contacted as follows:
Cheryl Bellomo, MSN, RN, OCN
Intermountain Southwest Cancer Center
Nicole DeLano, MSN, RN
Tricia Strusowski, MS, RN