After a cancer diagnosis, patients are often faced with a dizzying checklist: see the specialists they need to see, adhere to the medications that will give them the best chance at survival, learn about financial assistance programs, and don’t become overwhelmed throughout their cancer journey. Nurse navigators are advocating for patients in institutions across the country, setting an example for what oncology nurses at any level can do to help their patients through the cancer journey.
In 2010, Lee et al. reported that coordinated care and advocating for patients had “a positive impact . . . on healthcare outcomes of patients with cancer. Immediate improvements in clinical outcomes seem to be related to better access to care, more timely care, and increased communication among health professionals, patients, and families.” Nurse navigators lead in defining patient advocacy and encouraging their fellow oncology nurses to keep their patients from falling through the cracks.
Coordinating Care and Reducing Patients’ Burden
ONS member Colleen Palay, RN, BSN, OCN®, access oncology nurse navigator for Seidman Cancer Center at the University Hospitals Case Medical Center in Cleveland, OH, notes that one of nurse navigators’ vital roles is to connect patients with specialists who are important to their care.
“Our navigators use their expertise to determine which specialists patients should see, and we coordinate their appointments for them,” Palay says. “As a result, patients and families don’t need to call multiple physician offices, and they report this is such a relief because the process is so overwhelming.”
Palay works with patients with head and neck cancers to coordinate specialized visits to dentists. “Obtaining necessary dental evaluation and treatment for people with head and neck cancers has been particularly challenging. Many patients have not seen a dentist for years and sometimes decades,” Palay says. “Early referral to dentistry can save teeth and function. I’ve been working with the head and neck surgery department to refer their patients to me sooner, so that we have more time to help obtain this important care.”
According to ONS member Jean Sellers, RN, MSN, administrative clinical director for the University of North Carolina’s (UNC’s) Lineberger Comprehensive Cancer Center in Chapel Hill, navigators’ roles are varied when it comes to addressing the numerous needs of patients with cancer.
“We advocate to ensure the voices of our patients and their caregivers are heard,” Sellers says. “We may introduce patients and caregivers to the concept of shared decision making. Working together with patients, we may discuss what questions they want to ask their caregivers, we may research appropriate clinical trials, and we may provide resources that will enable their understanding of the disease and treatment decisions.”
Providing Educational Resources to Foster Patient Understanding
New patients often struggle with the litany of novel terms, definitions, and medications after their cancer diagnosis. Oncology nurses, along with the entire oncology team, must work to provide patients with a bounty of educational resources and encourage patients to ask questions about their disease.
“The Patient and Family Resource Center is part of the UNC Lineberger Comprehensive Cancer Support Program, and together we are able to offer our patients the services of a dedicated oncology nurse navigator, patient assistance coordinator, outpatient dietician, a social worker, psychologists, psychiatrists, and integrative medicine providers, as well as wellness, legal and financial counselors. We all work together to help lessen the stress when facing cancer,” Sellers says.
“Resources are provided based on the health literacy of each patient and caregiver,” Sellers continues. “We offer a variety of telephone and web-based resources that provide disease-specific information as well as resources for caregiver support; childhood, adolescents, and young adult patients; financial and transportation issues; tobacco cessation; nutrition; physical activity; and survivorship.”
For Palay, working with head and neck cancers offers a number of opportunities to address educational misunderstandings with her patients. She noted a significant fear surrounding the placement of feeding tubes.
“We identified gaps in our education about the placement of feeding tubes,” Palay says. “A large team worked together to create a health literacy-friendly percutaneous endoscopic gastrostomy (PEG) tube guide that is given to patients before the PEG tube is placed and is used to reinforce teaching as needed.”
For most cancer diagnoses, Palay says that the oncology nurses in the ambulatory setting provide patient education. “Patients can attend one of our chemotherapy or radiation therapy classes with their family members,” Palay says. “These classes, taught by our nurses, can help them learn more about what to expect and how to manage common treatment-related side effects.”
Adhering to Complicated Medication Regimens
Many patients with cancer struggle with adherence to oral oncology therapies. New and complex medication regimens present a potential for error when patients are responsible for administration. Nurse navigation provides a model for all oncology nurses who educate patients about oral chemotherapy administration.
“At UNC, we have dedicated pharmacists who meet with patients when they are starting on new medications. We also provide education and counseling,” Sellers says. “Poor adherence to medication can often make the difference in the outcome of a patient’s treatment. We have to assess risk factors that may indicate if a patient could have problems with medication adherence. These risk factors include living alone or lack of social support, a lack of transportation, low health literacy, and a lack of funds.”
According to Sellers, once patients are identified, they must be provided with the right tools that can help them. “An excellent resource for patients may be found at the American College of Preventive Medicine’s Medication Adherence: Improving Health Outcomes. A Guide for Patients,” Sellers says.
Providing Patients With a Voice
Oncology nurses have an obligation to empower their patients to speak up and share a role in the decision-making process about their care. Encouraging patients to be open and honest about their level of understanding is a key component of oncology care and something for which all nurses can advocate.
“We can make a difference when we help our patients overcome the feeling of shame when saying, ‘I don’t understand,’ ‘I don’t have the funds to pay for this,’ or ‘I’m afraid,’” Sellers says. “One of the most important roles that we have as oncology nurse navigators is to help our patients understand that they have a voice in their health care.”