The National Coalition for Cancer Survivorship (NCCS) was founded in 1986 to make cancer patients view themselves as survivors, not victims, and to address the many issues that patients encounter during and beyond cancer. NCCS defines patient self-advocacy as “a way of taking charge in an overwhelming environment of tests, treatment, and doctors’ offices. From arming oneself with good information, to seeking second opinions, to locating resources for support, to knowing how to ask the right questions.”1 Nurse and lay navigators have an important role in encouraging patients in self-advocacy by ensuring they understand their cancer situation, providing necessary education, helping with decision-making, addressing concerns, and directing them to reliable resources.
Key to a navigator’s role in promoting self-advocacy is assessing each patient’s needs, letting the patient guide the navigator, and refraining from judgment about the patient and his/her decisions. While physicians inform the patient regarding treatment options, it is the navigator who is able to work with the patient to better understand how the cancer diagnosis and treatment options fit into the patient’s lifestyle and life goals and address barriers and concerns.
Some simple communications strategies that navigators can use when meeting with patients include:
- Tell me what you heard from the oncologist (assessing what the patient has understood and what requires additional explanation)
- What questions do you have about your cancer and your options?
- Ask how much information the patient would like
- Provide contact information so that the patient can ask any additional questions that may come up
- Provide comprehensive information and resources to the patient so they can have a better view of the whole picture. And share the message that it’s best to take things 1 step at a time
- Share treatment costs at the beginning of treatment
To demonstrate how navigators can support patient advocacy, our case study describes a 52-year-old Caucasian male, BT, who presented with a diagnosis of borderline resectable pancreatic cancer. BT has a wife, a 12-year-old daughter and a 5-year-old son, and has not worked since late January 2016. He has undergone 6 cycles of FOLFIRINOX (fluorouracil, leucovorin, irinotecan, and oxaliplatin) and is not sure he wants to continue treatment because he doesn’t think it is working. Recently, when he entered the cancer treatment center, he started vomiting and complained of pain in his abdomen. He states to the navigator that he does not like taking medication. Upon further discussion, the navigator assesses that BT is angry and depressed and doesn’t feel that he wants to continue with treatment. He complains of changes in his appetite and mentions that he continues to lose weight. In addition, his daughter is acting out and refusing to go to school.
The nurse navigator recognizes the need to set up a family conference with the patient, his wife, the medical oncologist, the social workers, and the nurse navigator to establish a plan of care based on the patient’s situation and preferences. During the conference, the physician discusses the disease and related symptoms with the patient and his wife. The goal was to better understand the patient’s wishes about stopping treatment and address any quality-of-life issues. The provider suggests holding treatment in order to do another scan to see whether the cancer is responding to the treatment. The resulting information would help the patient decide whether to continue treatment. The oncologist also offers a referral back to the hepatobiliary surgeon to see if the cancer is now resectable. The social worker discusses palliative care options and gives the patient a referral to that service. In addition, the social worker describes the availability of counseling and recommends family counseling to help understand and manage their daughter’s behavior. The oncologist prescribes an antidepressant and Ativan for anticipatory nausea and anxiety. The provider reviews the importance of taking these medications for better outcomes. And they set up a follow-up appointment in 1 week, when the imaging results will be available.
Nurse and patient navigators are often positioned to recognize the barriers to care that an individual patient faces, whether it’s medical, psychosocial, financial, insurance-related, informational, health literacy, or other issues. Regardless of where the patient is along the cancer care trajectory, navigators can have a meaningful role in bringing the patient voice forward to the team and advocating for the best decisions and outcomes for the patient.
Potential Metrics for Navigator Impact on Patient Advocacy/Empowerment
- National Comprehensive Cancer Network (NCCN) treatment guidelines adherence (www.nccn.org/)
- Family conference documentation in electronic medical record
- Referrals documentation
- Plan of care documentation
- Imaging recommendations (www.nccn.org/)
- Plan of care timeliness from meeting to tests being completed
- Patient satisfaction
- National Coalition for Cancer Survivorship. www.canceradvocacy.org/cancer-advocacy/what-is-advocacy/. Accessed April 19, 2016.
Advance Directives, National Hospice and Palliative Care Organization. www.caringinfo.org/i4a/pages/index.cfm?pageid=3285.
American Cancer Society Patient Referral Form
American Cancer Society treatment decision-making tool. www.cancer.org/acs/groups/cid/documents/webcontent/003285-pdf.pdf.
Blaseg KD, Daugherty P, Gamblin KA. Oncology Nurse Navigation: Delivering Patient-Centered Care Across the Continuum. Pittsburgh, PA: Oncology Nursing Society; 2014.
Center to Advance Palliative Care. Policies and Tools for Hospital Palliative Care Programs: A Crosswalk of National Quality Forum Preferred Practices. www.capc.org/topics/palliative-care-guidelines-quality-standards/.
National Cancer Institute. Clinical Trial Education and Referrals. www.cancer.gov/about-cancer/treatment/clinical-trials.
Family conferences with multidisciplinary team, palliative care, social work, nutrition.
NCCN Distress Thermometer (used at follow-up visit). www.nccn.org/patients/resources/life_with_cancer/pdf/nccn_distress_thermometer.pdf.
Nurse Navigator Care Coordination Form
Nurse Navigator Follow-up Form
Patient Intake Form
Fox Chase Virtua Health Cancer Program. www.accc-cancer.org/resources/pdf/PatientNavigation-Tools/Survey-Patient-Satisfaction-Fox-Chase.pdf.
Nurse Navigation Survey
QOL Scale questionnaire