Guiding Patients through Their Care Journey

January 2019 Vol 10, No 1


Jillian Burns, BSN, RN
Abramson Cancer Center at Pennsylvania Hospital
University of Pennsylvania Health System
Philadelphia, PA

I am new to the world of nurse navigation, having spent the past 10 years of my career in an outpatient infusion clinic. To say this has been a learning curve would be putting it mildly. In the 9 months I have been in this role, I have learned a lot about various diseases and treatments as well as the nuances of navigating this patient population. My main focus is working with patients who have hematologic malignancies, mostly chronic leukemia, various lymphomas, and multiple myeloma. I see patients in different parts of the care continuum. Some I meet when they are first diagnosed, whereas others come looking for a second opinion or different treatment options, including clinical trials. Navigation of these patients is complicated, and they often need a lot of support, education, and reinforcement of the plan of care.

As a new navigator, I have had to determine how to best assist these patients, identify resources for them, as well as figure out a workflow that works for me. Learning how to navigate in a large health system is often challenging, and I have had to learn who my point people are at each site to better assist my patients. I have a team of navigators that I can call on for assistance or just run ideas by. I have learned that each day is different, and you may start the day with a plan, but you do not always end the day with a completed to-do list!

One patient who sticks out in my mind is Dennis, a 69-year-old man diagnosed with diffuse large B-cell lymphoma (DLBCL). He was originally scheduled to see another provider at a different site but was referred to me to see if he would be willing to see one of our providers at Pennsylvania Hospital, as I could most likely get him an earlier appointment. Dennis was reluctant at first, but once I was able to get him in to see a physician within 10 days, he was more agreeable. We spoke on the phone for about 45 minutes during my initial encounter with him, and I discovered he is very knowledgeable about his disease, previous treatments, and his need to seek treatment at a larger healthcare facility. I was also able to verify that his insurance was accepted and, if necessary, he would be able to get treatment here. Dennis presented for DLBCL consult.

During my assessment, I found out he has a history of back surgery and was feeling increasingly fatigued with associated lower back pain over a period of 2 to 3 months. He also developed right lower quadrant abdominal pain and used opiates sparingly with some relief. He was eventually admitted to an outside hospital with severe pain and was subsequently diagnosed with DLBCL (hepatic, splenic, and osseous lesions) with a liver biopsy. He was started on R-CHOP chemotherapy and completed 6 cycles in March 2018. Interval imaging showed response to treatment. However, a PET/CT scan in April 2018 revealed hot spots in his right iliac bone and spleen. Subsequent biopsies confirmed residual DLBCL. A lumbar puncture was performed; the result was negative for central nervous system involvement. He originally called seeking a clinical trial that we had, but he had only received 1 prior regimen of chemotherapy and therefore did not meet the eligibility criteria for participation. Many patients do not understand the clinical trial process, and part of my role is to provide education surrounding clinical trials. After his initial visit here, it was determined that he would continue treatment with his current provider in Delaware, with our physician consulting if he responded to therapy. Dennis kept me updated on his progress. I let him know that I was available for him, and I also helped navigate and coordinate his appointments between Philadelphia and Delaware.

As time wore on, another line of chemotherapy treatment failed. It was then determined that a stem cell transplantation would be the best option for him. Our physician referred him to a colleague who specializes in stem cell transplantation. I also work closely with the transplant patient population, so I was able to maintain my relationship with Dennis throughout this new process. I was present for the initial transplant education presentation and served as a point of contact afterward for both Dennis and his daughter. As Dennis went through the eligibility process for transplantation, he kept in touch with me with questions and concerns he had. Dennis needed numerous tests prior to mobilization for his transplant. These included cardiac and pulmonary function testing and labs, including viral studies, live function tests, and creatinine. Dental and cardiac clearance were also coordinated with his local medical team to minimize the need to travel to Philadelphia.

Although I provided ample education and support along the way, Dennis was unable to complete the stem cell collection process because of his current low blood counts. Although slightly devastated at this new development, he is hopeful that once his body recovers, he will be able to try again in the near future. In the meantime, I am still in contact with him, and he keeps me updated on how he is and what treatment he is currently undergoing. Although I am not in contact with him as frequently as I once was, Dennis knows that I am here to help, and that I am only a phone call away!

This was a valuable lesson learned for me as a new navigator. As nurses, we like to complete whatever intervention we initiate, but sometimes we need to recognize that providing continuing and open-ended support is our role and, in itself, is the value of our position as an oncology nurse navigator.

Related Articles
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A reflection on the beginnings of navigation and a vision of its future.
Barriers to Developing and Sustaining Effective Navigation Programs: What's Wrong?
May 2019 Vol 10, No 5
Find out if your navigation program is limited by these barriers.
Financial Toxicity of Drugs for the Treatment of Cancer Today
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Last modified: August 10, 2023

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