When Harold P. Freeman, MD, first coined the phrase “navigation” for breast cancer patients in New York City in the 1990s, I am not sure anyone realized the impact that this nursing specialty would have on other populations of women in the future. Through his medical practice, Dr Freeman noted that patients who were poor and/or of minority status presented with advanced stages of breast cancer and were more likely to die of their disease. He also recognized the many barriers that people in poverty had to overcome—including lack of transportation, limited financial resources, language barriers, and childcare responsibilities. This early model expanded to many other patient populations, and studies have shown that the 5-year survival of breast cancer patients improved dramatically. I have had the privilege to meet Dr Freeman at various medical conferences, and his enthusiasm for the navigation role is inspirational. Although the role of the navigator changes from one institution to another and each patient requires different assistance, it is quite clear that the main role of the navigator is to advocate for each person who is diagnosed with breast cancer in a multidisciplinary setting. We speak on behalf of our patients and can overcome barriers that a confusing medical system can often encompass. As nurses, we focus through a lens of clinical care, logistics, and treatment regimens. Combined with compassionate and empathetic listening, the patient’s journey is made less stressful. Many studies have indicated that navigating a patient through a vulnerable time such as a breast cancer diagnosis improves timeliness to care and patient satisfaction.
The role has evolved over the years but contains essential elements that all patients can benefit from, such as advocacy, coordination of care, education, and empathy. This “concierge” service can last as long or as short a time as the patient may need. I often tell patients that I will knock on the door, and they can let me in for a long visit, a short visit, or not at all. Building a trusting relationship can take time and will depend on many factors. Relationships of a nurse navigator are multidimensional. Navigators depend on communication as a team and work closely with physicians and other members of the cancer community, both clinical and community-based. Navigators must be open and flexible when it comes to the beliefs and cultures of our patients and be a liaison between family/medical staff and caregivers that may be beneficial to all involved. The nurse navigator role requires the nurse to be especially committed to confidentiality of patient situations unless there is strong support and evidence to involve adult protective services or law enforcement.
Many patient navigator examples indicate the importance of the navigator model:
- When patients find themselves in financial difficulty, the navigator can find resources to assist in mitigating the stress of medical bills
A 42-year-old woman has stage III breast cancer. She has been on medical leave from her work in the local school district, and her family is living on the sole salary of her spouse. Large copayments and deductibles have placed them in a financial crisis, often referred to as financial toxicity. Financial toxicity is defined as the emotionally, mentally, and physically debilitating—and often life-threatening—financial side effects and burdens induced by treatment. The National Institutes of Health states that several studies have shown that cancer patients and survivors are more likely to have financial toxicity than people without cancer. It is no surprise to the navigator that this family is in need of assistance to lessen the stress of outstanding bills while struggling with ongoing breast cancer treatment.
The navigator contacted the patient and worked with the patient and spouse to organize their bills and determine the overall outstanding total. With this information, the navigator contacted the hospital patient access department, which authorized a discount and application for financial assistance. Once the application for consideration of the balance due was being processed, the navigator also had a resource for free legal services. With a 30-minute consultation, the patient was able to determine other benefits were due to her from the school district. These 2 resources reinforced the family’s income and helped them to enjoy a small victory in reducing or eliminating the mounting bills due.
- A single woman living alone needs transportation to her medical visits when relatives or friends are not available
The patient is an 80-year-old woman with stage I breast cancer who, after a lumpectomy with sentinel lymph node biopsy, is ready to begin radiation treatments. She has selected a radiation oncology practice within the town where she lives, but it requires daily visits Monday through Friday. She has some family members who live nearby, but after the initial recovery from surgery, everyone returned to their own daily routines, and she is no longer able to drive herself to doctor appointments. This has caused some distress for the patient as she is uncertain how she will be able to comply with her daily visits to radiation without asking her family or neighbors. Linda is proud and independent and would like to arrange her own transportation. She calls the navigator to discuss her options and is reassured that there is transportation available to her from several resources. It is vitally important that the navigator know the available nonprofit organizations in the patient’s community and their selection criteria for offering assistance to a patient. In this case, Linda was able to obtain free rides to and from medical appointments through the Area Agency on Aging available in her county. This organization is available to seniors in treatment and is reliable and courteous. Linda was thrilled to have the control over her appointment schedule and not have to “bother her family, friends, or neighbors.”
- A newly diagnosed patient has domestic issues that may require legal assistance
The patient is a 56-year-old woman who underwent bilateral mastectomies for noninvasive breast cancer. This was a compelling patient case in that she made her decision not based on genetic predisposition or medical necessity, but out of fear of recurrence. She is a sensitive woman who lives with a challenging spouse. She claimed that he would not help her with postoperative care and refused to let anyone into the house to assist her. This also included home health nursing care after discharge from surgery. Further details from the patient were worrisome in that she feared that her decision would impact her marriage, but she was unable to discuss her surgical decisions with her spouse. She was certain he would not agree with the aggressiveness of her treatment or her reconstructive choice. When the navigator became involved, there were many long telephone conversations and face-to-face meetings to review options in treatment. There was never a time or place that was convenient to meet with the spouse, with or without the patient. When a navigator has only one side of a situation, it is difficult to draw conclusions. It is best to have a multidisciplinary approach to planning and completing any patient’s treatment plan, but there are times that call for a preemptive conversation with other members of the cancer care team, such as social workers, case managers, and the surgeons. It was agreed that this situation called for a joint effort to offer the patient a safe environment as she had made it clear that she did not want to return home for postoperative care. Adult Protective Services (APS) within the county was also notified to document the patient situation as required by our licensing as clinicians. A free attorney counseling session was available to the patient so she could determine the next steps in her legal rights within her marriage or separation. Surgeons were also involved so that they could tailor their care to the domestic situation that the patient would face.
In the final analysis of this patient’s story, everything went well surgically, and the patient had a safe environment to recover. Friends from a support group became invaluable, and APS had a profile in which to refer to any ongoing issues with this couple. Legal aid was standing by to hear from the patient about her wishes going forward.
Future Considerations for Nurse Navigation
Navigators across the country will have to adapt to the changing world of healthcare, just as our patients will. Insurance coverage, access to care, and financial toxicity will remain among the most urgent needs our patients will face. The healthcare industry will have to find ways to serve their individual communities within their business models while creating strategic pathways to incorporate success with the ever-changing oncology landscape. It will be a daunting task, but navigators will continue to serve their patients within this framework. Cancer care is noble work, and there is no doubt that it can be overwhelming at times. In the near future, navigators may:
- Find advanced nursing practice education a necessity
- Advance the navigation role with mandatory certification in a subspecialty of cancer care
- Consider independent practice with billable hours in a collaborative practice with physician colleagues
Contract and Covenant as a Breast Health Navigator
Nurse navigators have both a contract and a covenant with their patient clients. As healthcare providers, we are oftentimes employees of large healthcare systems, committed to compassionate care and corporate compliance. We must be aware of healthcare regulations and organizational structure. However, our role goes beyond this. We are advocates, voices for the unheard, and ethically bound to find solutions for the most vulnerable during a health crisis. We provide a “professional promise” to work within our health systems and yet find ways to assist the patients, families, and communities.
- Freeman HP. The history, principles, and future of patient navigation: commentary. Semin Oncol Nurs. 2013;29:72-75.
- Hannan-Jones C, Young C, Mitchell G, Mutch A. Exploring nurse navigators [published online September 2, 2019]. Aust J Prim Health.