Distress and the Nurse Navigator, Part I

Kerrie L. Girard, RN, BSN

Clinical Navigator, Banner MD Anderson Cancer Center, Gilbert, AZ

Imagine for a moment that you are a young, healthy, vibrant wife and mother who goes to the emergency room for abdominal pain and bloating. You are expecting to have a GI workup and to be sent home with a medication for gastric reflux. Several tests are done: labs; a CT scan of the chest, abdomen, and pelvis; and a paracentesis to remove the extra fluid that is causing the bloating. The simple ER visit turns into an admission to the hospital for further workup, and the outcome is a diagnosis of ovarian cancer with metastasis to the liver. You suddenly change from a woman in control of her health and well-being to a shocked, frightened, overwhelmed patient who hears the word “cancer” but does not fully understand what it means. Oncology, surgery, chemotherapy, and radiation are words you never imagined in your personal health vocabulary. Your focus shifts from the diagnosis to the prognosis, and from thoughts of your own well-being to thoughts of your husband, your children, and your career. How stressful would this be?

Think now about being a middle-aged man who has just returned from running a marathon. You and your coworkers at the fitness center that you own and operate are training for a triathlon in 6 months. You go for your yearly checkup with your primary-care physician and have blood work, a cardiac stress test, a digital prostate exam, and a routine physical. Your doctor notices an enlarged prostate gland on exam and adds a prostate-specific antigen (PSA) level to the blood work. You leave the office and don’t think much about it until you get a call a week later from the medical assistant, who tells you that you will need to consult an oncologist for your prostate cancer. You have no family history of cancer, you don’t understand what an elevated PSA means, and, frankly, you don’t have time to be sick. All you can think about is how this diagnosis will impact your running and how reasonable it would be to put off treatment until the triathlon is over. How stressful would this be?

Now picture yourself as a new grandmother, recently retired after a 40-year career as a business professional. You are enjoying spending time with the new baby but seem to feel a bit more fatigued than you are used to. You develop a cold that just seems to linger on. The cold turns into an upper respiratory infection with an annoying cough. You see your family doctor, who prescribes an antibiotic. Two weeks after completing the medicine, the cough is not going away. Suspecting pneumonia, your doctor orders a chest x-ray. When you are called in to discuss the results, a bombshell is dropped: You have suspicious lesions in your lungs. You are referred to an oncologist, who orders subsequent tests including biopsies; a PET scan of the chest, abdomen and pelvis; and blood work. In the process of going through the tests, you develop significant pain in several areas on your spine. When you meet with the oncologist to discuss the results of the tests, you are told that you have non-small cell lung cancer with lymph node involvement and metastasis to the bone. If this wasn’t devastating enough, this is the same diagnosis that your husband received less than 2 years ago. You saw him suffer and change from a strong man into a weak, frail individual who left this world much too soon. How stressful would this be?

How stressful any of these situations would be depends largely on the individual faced with the situation. Distress is an underestimated, difficult-to-define, and unique response; how stressful something is for one person does not predict how stressful the same situation will be for another. Distress is, however, something that every cancer patient deals with. One goal for a successful nurse navigator program is to be able to recognize distress as a condition that plays a large part in the patient’s cancer journey. With that insight, a navigator can help the patient alleviate the distress, navigate through the rough patches, and focus on his or her health and well-being. To be most helpful, the nurse navigator needs to quickly recognize the patient’s health and financial concerns, psychosocial needs, coping mechanisms, and support system, as well as any cultural influences or religious beliefs that may impact care. The nurse navigator has to identify barriers to treatment so that the patient can get the most appropriate care as quickly as possible.

At Banner MD Anderson Cancer Center (BMDACC) in Gilbert, Arizona, the nurse navigator program is just getting under way. Since its debut in September 2011, the program has changed multiple times, and the process by which patients navigate through the system has been a moving target. Initially, the nurse navigator, who is an oncology nurse in a case manager’s role, would meet the patients after they had consulted with financial services. This allowed the navigator to assist right up front if high copays or insurance concerns (such as the requirement for prior authorization) were identified.

Meeting early on also gave the nurse and patient time to form a relationship and to build trust in one another. The navigator could assess the support system, the family dynamics, and the patient’s coping mechanisms. Ideally, the nurse navigator would obtain important information on the initial visit that could be relayed to the appropriate staff, such as social worker, dietitian, physical therapist, or physician. The nurse would gather treatment information, including the patient’s understanding of his or her diagnosis and prognosis; family history of cancer; past surgery, chemotherapy, or radiation treatment; and any medical records or scans the patient had on hand.

In theory, this meeting prior to the patient seeing the physician was a good idea, but every good idea has its drawbacks. BMDACC nurse navigators recognized that too much time was being spent with patients who were only getting a second opinion; patients who were not returning for treatment were not going to need the nurse navigator, and the time spent on those patients was time taken away from the patients who really needed assistance.

Meeting the patients ahead of time occasionally made the patients late for the physician visit, causing both the patient and the physician to feel rushed. The anxiety level of patients facing a cancer diagnosis was so high that a large portion of what the navigators were saying so early in the process was not being heard. We recognized that a different approach was indicated to better provide for the needs of our patients.

Therefore, the nurse navigators switched gears and began seeing the patients after they met with the physician. This allowed the nurse navigator and physician to better communicate regarding the patient’s treatment plan and address distress concerns.

Regardless of when patients are seen by nurse navigators, at BMDACC, the distress level of the patient and his or her loved ones is considered very relevant to the treatment plan and to the care received. Any navigator program should address distress as one of its key components in order to be effective. The caring, nurturing, and compassionate traits that go along with nursing also need to be incorporated into navigation programs. Cancer patients deserve medical treatment for their cancer and distress relief from their nurse navigator.

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View Part II of this series.