The navigation program at Levine Cancer Institute is a nurse-based program with 33 nurses who are tumor-specific covering brain, breast, and colorectal cancer, to name just a few. The navigators are aligned with their respective clinics and work as a team in the management of patients and caregivers. From prediagnosis through the continuum of their cancer care, a nurse navigator can make the process less confusing, connect them to resources, and help them get the exceptional medical care they need.
As a hematology nurse navigator at Levine Cancer Institute in the Plasma Cell Disorder program, navigating patients through the complexities of multiple myeloma can be very challenging and very rewarding.
I have been practicing in hematology cancer care for the past 15 years. Over the past 7 years, I have specifically worked with multiple myeloma patients. My passion for working with myeloma patients is to help them understand that they are running a “marathon and not a sprint.” Myeloma is a chronic blood disease, like hypertension, and patients will always need to be on some type of treatment. Connecting patients to resources along their journey, identifying and eliminating barriers, and providing education will allow them to complete the race and have access to quality cancer care.
In writing this article, I want to share some tips I use in navigating hematology patients.
Tip #1: New Patient Outreach
Working with my physicians and our referral coordinators, I am notified of all new referrals to our program. When we have a new consult coming to our clinic, I contact the patient by phone prior to their visit to understand what they know about the referral. Multiple myeloma accounts for only 3% of all blood cancers, and because it is so rare, often patients have not even heard of this type of cancer. Some patients have never been to a cancer center and do not know why they have this appointment. Some will tell me that their physician told them they have a high level of protein and/or an abnormal protein in their blood. The responses can be different depending on the patient and their understanding of their cancer. Providing the patient with education about the consult appointment, expectations of the visit, and the flow of our clinic has been very reassuring to my patient population. I can be that reassuring figure for them before they even come for the consultation, easing their anxiety and providing them with an understanding of our clinic process, which often can be very stressful. I can provide insight to my physicians regarding the patient’s understanding of their diagnosis and how to approach them at the visit. The preconsult phone call opens the lines of communication within the team and lets the patient and caregiver know that they are considered part of this team. It also allows me to identify barriers before the patient comes to our healthcare system and to address issues that might prevent them from receiving their care. After the initial consult appointment, I follow up with the patient by phone within 1 to 2 days to see what questions they have about their appointment. For new patients hospitalized and diagnosed with myeloma, I see those patients on the inpatient side and provide them with education. I also work with our outpatient staff to make a smooth transition from inpatient care to our outpatient clinic. Working together as a team, care can be delivered more effectively.
Tip #2: Challenge Yourself to Be Knowledgeable About the Cancer and Treatment Options
The management and treatment can be complicated and ever changing for patients with blood cancers. Patient education is an integral part of my job as a nurse navigator. In myeloma, the landscape of treatment and management is a moving target. I need to be aware of treatments and clinical trials that patients can access to manage their disease. I attend our myeloma section meetings, in which new clinical trials are being discussed. I also attend our tumor board meetings, in which patient cases are presented and discussed by the team. As a nurse navigator, I can contribute if through my assessment I identify barriers to the patient’s treatment and/or access to healthcare.
Tip #3: Be Creative with Your Patient’s Management of Treatment
A patient’s treatment can be overwhelming and can have many moving parts. It is important to assess your patient’s level of understanding and individualize their education based on their understanding. Often, they are on a combination of intravenous chemotherapy and oral medications. Part of my job as a nurse navigator is to provide chemotherapy education. I will make treatment calendars for my patients each month for their chemo cycle. Each drug will be color coded corresponding to the day they need to take it. The feedback from my patients has been very positive, and they have shared with me that this helps them to stay on track with taking their chemo medications as scheduled. Now they do not leave the clinic without asking for a calendar. Compliance and adherence are key to myeloma patients being able to manage their disease. When a patient has started on new therapy, I will follow up with a phone call to the patient to see how they tolerate their chemotherapy.
Tip #4: Be an Advocate for Your Patient and the Caregivers
One of the roles of nurse navigators is to be an advocate for their patients during their cancer journey. At the Levine Cancer Institute, we meet with patients at their consult appointment. We sit in on the visit with the patient and the physician to discuss their cancer and treatment. It is important to observe the patient and caregiver and watch for their reactions. Some are shocked by the diagnosis and/or the relapse of their disease. Establish trust with your patient, be that calming voice that they need to hear. Reinforce what they were told about their disease and treatment, and manage their expectations. Preparing the patient for lifelong changes related to finances, which include income and their role in their family, is part of our job. As a navigator, we are sometimes the one who is there to pick up the pieces. Having the navigator be the central figure for the patient, helping with coordination of care and being the gatekeeper with other disciplines to meet the needs of the patient, is critical. Sometimes it is the little things done that make the biggest difference to the patient and caregiver.
Tip #5: Know Your Community Resources for Your Patient Populations
Part of my role as a myeloma navigator is to know the community resources available to patients and caregivers. I work closely with our patient support group leaders to help bring awareness of the services they can provide to that newly diagnosed patient and caregiver. I have worked with myeloma patients who are now mentors and will talk with newly diagnosed patients about myeloma, treatment, and the psychosocial impact this blood cancer can have. I encourage my patients to speak with a person who is living with blood cancer, who has had chemotherapy, or who has had a stem cell transplant. Most of my new patients will talk with one of these mentors and find it to be very helpful. I also go to our support group meetings in my area and talk with patients about their disease and educate them on new developments in the management of their disease, as well as symptom management and resources that might be available. Working in my community has been valuable in my role as a nurse navigator. It opens a line of communication that otherwise would not have been there. Our cancer center provides patients and caregivers with many opportunities to learn about available clinical trials and research.
I hope that these tips are helpful in making your job as a hematology nurse navigator easier. I love working with hematology cancer patients. I often tell them how much they teach me about life experiences and living life to the fullest. I only hope that as a hematology nurse navigator, I can help them live their life to the fullest!