Advances in cancer care and treatment have led to excellent success in the “fight against cancer.” Millions of lives have been saved through the use of more targeted treatments and medications. The transitioning of care to the outpatient setting has been shown to increase a person’s quality of life during treatment. Patients are now more educated with easier access to information than ever before. Often they walk in with more knowledge of what treatments and resources are available, their chances for survival, and what past patient experiences were. Our expertise on programming to educate the public and use of better screening tools has also increased the number of cancer patients entering the healthcare system. Sadly, many of these individuals are underserved or uninsured with added barriers to their care. Improvements, information access, and changing healthcare coverage have made cancer care more complex. Patients today have more decisions to make and more options to consider than in past years.
Patient engagement in treatment decisions, as was seen with the physician asking MMA about chemotherapy, has become a more accepted concept in healthcare. The responsibility of the clinician is to make patients comfortable and engaged in their care. But with so many demands on the clinician’s time, it can make patients feel like they are in a “fast food” line while they are being treated. Patients each have their own issues, concerns, or barriers. However, there are commonalities that occur among all patients. Coordination of care is key to having limited frustration while on cancer treatment. Therefore, if patients have a point of contact that can guide or “navigate” them through their specific cancer care, then patients will be less frustrated, empowered, and most of all supported when issues occur. Looking at MMA’s experience, I wish that she had a nurse or patient navigator to guide her through all the issues that presented themselves during her cancer journey.
Although the use of navigators has been increasing, many ask what is a nurse or patient navigator. The idea of patient navigation was developed during the 1980s in Harlem, New York, by Dr Harold Freeman. He was able to utilize nonclinical individuals, what he called “navigators,” to help African American women obtain breast cancer screenings and treatment. The “culturally competent” individuals worked with the patients to eliminate barriers to the diagnosis and treatment of early-stage disease. Patients enter the oncology world shocked from the diagnosis and confused at which way to go. Having people who have the experience of cancer care and understand the possible challenges of the journey ahead can help patients remove roadblocks, and provide supportive services when needed.
A navigator would have been able to answer the questions that have left MMA confused and infuriated with her healthcare. For example, understanding the reason it was necessary to use a different medical center over MMA’s hometown location. These individuals set up multiple appointments and truly help patients make informed medical decisions. Having access to the correct services helps the patient when there are issues or barriers around family, employment, and other personal issues that can distract the patient on treatment. Navigators help with medication issues, education when appropriate (ie, when MMA had a medication that was from a different manufacturer), and direct the patient to support services related to their barriers. They help patients find community support networks that will assist the patient and family to cope with the new diagnosis. If frustrations occur during the clinical care, navigators can be a voice for the patient when dealing with physicians, pharmacists, or other team members. Even if care is completed, the navigator can continue the follow-up support into the survivorship phase with questions about cancer screening, prevention, and surveillance. Navigation programs have been added in many hospitals across the country. Funding has been created from both private and government sources to help support these programs. New standards and guidelines for navigation programs have been created for cancer centers that would like to be accredited by the Commission on Cancer by 2015.
Sadly, as we move into the new age of healthcare, the patient is becoming more of a customer. Although we can provide a diagnosis, it is the service that we provide and the patient’s opinion that count the most. If this is true, then having the right “customer service representative” to help patients when there are issues is key in making the patient feel satisfied and confident that everything possible was done to help them. Navigators are those people and navigators would have helped with this patient.