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UAB Nurse Navigators Guide Patients with Cancer through Challenging Journey

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A cancer diagnosis can bring fear, anxiety, and sometimes confusion. Patients need information they can trust to make important decisions through treatment, recovery, and survivorship. The experience is sometimes referred to as a journey, and patients often need guidance along the way. Oncology nurse navigators provide that guidance, helping patients get past the obstacles and demands of cancer treatment.

Karen Waldrop, RN, BSN, OCN, ONN-CG, an oncology nurse navigator with the O’Neal Comprehensive Cancer Center at UAB, guides patients through that complicated journey of cancer diagnosis and treatment. With over three decades of nursing experience, Waldrop understands the challenges that can overwhelm patients newly diagnosed with cancer. She greets them with a simple explanation of her role: “If you don’t know who to call, call me.”

When Waldrop began her career with UAB Medicine more than 30 years ago, she worked in a number of clinical areas, including infectious disease and gastrointestinal medicine, and she cared for HIV-positive patients in the hospital and at the 1917 Clinic. She stayed home for almost a decade to care for family members who had serious health conditions, then she returned to UAB Medicine in 2011 to work in outpatient infusion. It was there that Waldrop says the patients “claimed her heart.”

“I guess I really just fell in love with working with oncology patients,” Waldrop says. “I find it easy to care for them because, in my experience, our cancer patients are so appreciative of the care they get and so courageous about their conditions.”

A Lot to Learn

Navigators with the O’Neal Comprehensive Cancer Center at UAB serve on disease-specific teams to identify and address each patient’s unique needs and ensure that details of care are carefully coordinated. Alongside the clinic staff, navigators help answer questions, recommend educational materials, coordinate treatment plans, and resolve any problems. The goal is to support patients and their caregivers throughout the care process. Waldrop says the first days often are crucial ones for helping patients cope with many details and procedures.

“We make sure that all pieces of information, such as clinical notes, pathology data, and images from radiology, are in place for the doctor’s visit with the patient,” Waldrop says. “At that first meeting, it may already be determined that our patient will receive chemotherapy. If they will need a Mediport for chemo administration, we make sure that it is scheduled to be placed prior to their first infusion. Many of our GI patients will also receive chemotherapy outside of the clinic via an ambulatory pump. Some patients will not be able to return to the clinic or they are not eligible for home health care to manage pump disconnection. So in addition to the information we send prior to infusions, I will send a link to a video about ambulatory pump disconnection that my patient and caregiver can watch, and talk to them by phone to make sure they understand the instructions. Then we make certain the patient is scheduled to see a provider before their next infusion to check on how well they are tolerating the chemotherapy drugs. We coordinate all of this so the patient doesn’t have to think about it.”

 

Waldrop is describing the clinical side of her role as navigator. She says there also are many practical challenges for patients who are just learning the landscape of the medical system.

“The system has become second nature for most of us who work for UAB Medicine,” Waldrop says. “We’re familiar with the campus and buildings, the process of making appointments, and preparing for treatments. Those things are brand new for many patients who arrive at The Kirklin Clinic. There’s a lot to learn, from getting the first appointment, parking in the deck, and finding the correct building to knowing what to expect in the diagnostic process – all while dealing with a life-changing diagnosis. I often wonder how people with no knowledge of health care deal with such an overwhelming task. That’s why, as a navigator, I’m a liaison for the patient in all directions. If I don’t have an answer to a question, I find someone who does.”

Another Type of Terrain

Waldrop’s work goes beyond guiding patients through the medical system and treatment plans. There’s also an emotional terrain filled with a unique set of challenges.

“A lot of what I do is involved with getting our patients to focus on the right now,” Waldrop says. “I explain that we will go step by step. After hearing the words ‘cancer’ and ‘chemo,’ they might not be in the best frame of mind to fully absorb what we are saying about the care plan, so I’m a big believer in repeating instructions, information, and little details. We know from experience that patients are mentally zooming ahead to what they hope will happen or what they fear will happen. It’s a common emotional response to such a serious diagnosis.”

Recognizing the features of this emotional terrain helps Waldrop and her fellow navigators remain aware of the specific concerns of each patient and the needs of patients’ families.

“There are times when I have to be alert to the personalities of some patients in terms of how well they communicate,” Waldrop says. “Some of them won’t call us with questions on their own. They may be reluctant to complain about side effects of chemotherapy. There is no reason these days to suffer from severe nausea. We have very good medication now. We also try to be sensitive to family dynamics, to know who is responsible for home care and how well that’s going. In some cases, I might help with scheduling appointments to adjust to the needs of the caregiver, not just the patient. I have a real heart for the caregiver’s needs because of my experience caring for family members of my own.”

Measuring Success

Waldrop says her main task is to watch for any obstacles to optimal care and find ways around those problems. She emphasizes that each day is one step of the journey, and the goal is to make each step as free from stress and anxiety as possible.

“My definition of a success may differ from other people’s,” Waldrop says. “I have a patient right now who has undergone chemotherapy and radiation and may have surgery. He has a potential for cure. He said to me, ‘I just want to thank you, because everything has gone seamlessly from top to bottom.’ As a navigator, I see that as the best outcome. Cancer steals so much from people, so while they are in treatment, we want to make sure the process takes no more than is necessary from their daily life and certainly creates no additional burdens.”

Waldrop says the nature of her relationships with patients is as unique as each patient’s response to treatment and individual experience in living with cancer. A common thread for most patients, however, is the importance of knowing they are not alone. Just having a navigator available provides a great deal of comfort.

“Our goal is always to decrease stress and anxiety, so patients can focus on their lives,” she says. “In this work, we talk about a journey, taking a turn, or looking around the next corner. Each day is a step in that journey. Along the way, I get a lot of satisfaction from learning that a patient’s journey was easier because of something I did for them or made possible for them.”

The O’Neal Comprehensive Cancer Center at UAB offers navigation services to patients with cancer at UAB Medicine. The navigation team works directly with patients and their caregivers to help ensure a personalized and coordinated care experience – from diagnosis and treatment to survivorship. Click here to learn more.