|The following article features coverage from the ONA 2019 Navigation Summit. Click here to read more of Oncology Nurse Advisor‘s conference coverage.
Hematology nurse navigators specialize in hematologic malignancy, or blood cancer. The term blood cancer covers a wide group of diseases, including acute and chronic leukemias, Hodgkin and non-Hodgkin lymphomas, myeloma, myelodysplastic syndromes, and myeloproliferative neoplasms. The navigator may also work with patients as they move towards the bone and marrow transplant (BMT) process. With a diversity of patients, diagnoses, and disease processes, hematologic malignancy navigation is a complex process.
As a whole, blood cancers have no standardized screening. Although there are risk factors, many patients are left reeling with an unanticipated diagnosis. Once diagnosed, precision medicine using molecular profiling along with patient characteristics and needs will hone in on the best treatment options for the patient. New treatment innovations, such as CAR-T, and new targeted treatments are expanding those options. Despite expanding treatment options, treatment is often determined by a patient’s circumstances. The best treatment is ineffective if it is not accessible. Anticipating needs and barriers early is vital, as an oncology nurse navigator (ONN) what can we do to help the patient get that care?
Helping patients decipher the treatment path and terminology of blood cancer treatment is crucial. An ONN can help a patient find meaning, connect the dots, and understand how these terms apply to the patient’s unique situation. The navigator should encourage open communication on goals of care and expectations as these discussions set the stage for the road ahead. An early understanding also allows the navigator to advocate for the patient as the journey continues.
The term navigator often takes on a literal meaning. A patient’s treatment map may include frequent labs, transfusions, PICC or port care, colony stimulating factors, prophylactic medications, multiple cycles of chemotherapy, BMT, antibiotics, and for some, long term maintenance therapy. When you combine this intense list of “stops” along the way with roadblocks such as living a long distances from the treating facility, balancing work and family roles, no/insufficient insurance, financial strain, and emotional distress, patients often find themselves lost. A navigator who can anticipate needs, provide resources, and formulate creative solutions is key to breaking down barriers and ultimately influencing outcomes.
To facilitate services needed, a navigator must be aware of the resources, process, and procedures unique to their individual area of practice. A number of resources are available to patients through national and local charities, copay assistance, and patient assistance programs, to name just a few. Connecting these resources defines navigation and often requires collaboration and persistence. A patient’s needs continue after treatment into the survivorship phase: routine check-ups, labs, scans, and reintegration into the new normal. Educating patients and providing them with a written document summarizing their care, the path ahead, key time points, and potential late effects is ideal.
Navigators assist patients in staying on course as much as possible. That is the job but the result is so much more. Navigators provide patients with consistency in the midst of a storm, advocacy in chaos, direction when all seems lost, and most importantly, hope.