Two months into starting as an oncology nurse navigator, I learned of a 62-year-old woman, we will call her Sally, who had recently been diagnosed with rectal cancer. When I called Sally to introduce myself and the navigation role, she immediately broke down into tears. She told me she did not have any insurance, did not understand the stage of her disease or treatment options, and was worried about finding oncology care. Sally told me that she had not had insurance or worked for many years and had consequently delayed seeking medical treatment for her symptoms for over a year. She said she was embarrassed that she did not have insurance and therefore never sought medical help and was now embarrassed that she had waited so long to seek help, because she knew her symptoms had progressed. She told me that she was not sure that she even wanted to pursue treatment. She was not a person who took medications often, and when she did, they were usually herbal in nature. She just wanted to understand the severity of her diagnosis and how much time she might have left. She knew based on her symptoms and initial talks with the inpatient physicians that her prognosis was not good. Sally also told me that she did not have any family and few friends, and she was currently living with a roommate whom she hardly knew. Sally felt very alone and scared. After further discussion, I learned that Sally lived in an outlying county, so she did not qualify for the unfunded oncology clinic in the city, and she did not have a primary care physician. I knew this was going to be a challenge because there are not many resources outside the city for unfunded cancer care. I quickly began making phone calls to other nurse navigators and institutions in her county to find a place for her to receive outpatient follow-up and treatment. I learned of an oncology center that accepts charity cases and quickly got a referral from an inpatient social worker who had cared for her during her brief inpatient stay. Sally was called later that day with an appointment date and time for the following week to meet with a medical oncologist.
Later that week I received a phone call from one of Sally’s few friends, Lisa, who was concerned for Sally and stated she did not think Sally wanted to pursue treatment and had told her, “I’ve already suffered enough.” Lisa had discussed palliative options with Sally and wanted to connect her with a hospice agency to provide her with more information. I contacted the hospital social worker and had another referral sent to our local hospice chapter. I also spoke with the hospice admissions nurse and filled her in on Sally’s situation. The hospice nurse scheduled a meeting with Sally after her oncology appointment, per her request.
Before her appointments, Sally contacted me, saying she was having active bleeding and severe pain and was not sure whom to call or where to go. I advised her to go to the emergency department at the hospital where she would be receiving her oncology care. There, she received prompt treatment and intervention.
I followed up with Sally after her medical oncology appointment and workup. She told me that she had stage IV cancer, and that the physician had offered treatment options. She said she had decided not to pursue treatment because she wanted to enjoy the time she had left and was not afraid of dying—or, in her words, she felt ready “to party on the other side.” She said the oncology center had been able to thoroughly answer her questions and provide her with all the information she needed to make an informed decision. Hospice was now coming to her home weekly, and she happily said she needed an appointment calendar to keep all of the visits straight—from the nurse, the nurse’s aide, the chaplain, and the social worker. Sally told me she felt at peace with her decision, and, most importantly, felt well taken care of.
I never met Sally in person, as all our conversations were done on the phone; however, she had a big impact on my understanding of navigation and patient advocacy. I learned what it truly means to “navigate” a patient through the system and how to identify and address barriers to care. I learned that we need a plan in place for those patients who do not have funding or family support to help them receive care and understand their diagnosis. We need to provide a voice for those patients who do not know how to speak up or feel crippled by a lack of understanding of the healthcare system and an embarrassment for not having financial means. Through this experience, I have begun to develop my own patient-centered nurse navigation approach and viewpoint. I understand the importance of patient choice and addressing all aspects of a patient’s well-being, including physical, emotional, and spiritual. I have begun to research other support services for patients in similar circumstances in all the surrounding counties that my job encompasses to be better prepared for similar situation in the future. I also learned the importance of collaboration and asking others for help. What a privilege it was to care for Sally, and I know I will think of her for a long time to come.