A cancer diagnosis is overwhelming. Patients may have trouble understanding the disease including prognosis and treatment options, navigating financial burdens and worrying about loved ones.

To support patients through the complex journey of cancer treatment, a specialized field of health care professionals known as Oncology Nurse Navigators (ONNs) assist cancer patients from diagnosis through treatment and beyond. Their knowledge of how to navigate the health care system and promote quality care delivery enables patients to engage in their care and focus on recovery and healing.

REALM IDx spoke with Irene Guterman, MS, RN, CNL, CYT, Head of Health Management Innovation at healthŌme, and current Ph.D. student at University of Virginia School of Nursing, to find out more about her former role as an ONN and the importance of patient advocacy.

How do you become an ONN? Is special certification required?

Nurses may choose to obtain a certification through the Academy of Oncology Nurse & Patient Navigators (AONN+). Some ONNs may be oncology certified nurses (OCNs), a certification which also applies to inpatient and infusion nurses.

How did you get started supporting patients in oncology?

I made the transition from inpatient critical care to outpatient oncology because it more closely aligned with my philosophy of care. Rather than focusing on one patient system or intervention, I believe it is essential to view each patient holistically. Nurse navigators address all patient needs including physical, emotional and practical ones. I fell in love with this patient population; even in the midst of tremendous hardships and challenges, their resilience and spirit shines.

What are some of the roles and responsibilities of an ONN?

At the University of Maryland, my role included working closely with treating oncologists to coordinate diagnostic testing, treatment schedules and follow up appointments, ensuring clinic operations ran smoothly, and providing patient education and advocacy. The average oncologist spends between 15 and 25 minutes with a patient.* When the doctor has to move on to the next appointment, the nurse navigator is often the one who remains in the room to ask, “What questions do you have now?” and provide additional education and clarity. Patients receive a barrage of information, especially in the beginning of treatment, in addition to medication education. I found it helpful to reinforce the “need to knows” like when to call us, what to avoid during chemotherapy, and the importance of continuing to find moments of joy whenever possible.

What challenges do ONNs face; how do you support your patients?

ONNs are incredibly savvy when it comes to navigating the myriad of patient challenges in cancer care. From medication management to schedule coordination, navigators must be resourceful, organized and creative! ONNs truly relate to their patients and help patients to adjust to treatment, coordinate within the health care system, appeal a medication denial, or simply offer a space for patients to be vulnerable.

For example, I had a patient who was having difficulty getting to her treatment appointments because she had three young children and no childcare. Her oncologist prescribed a standard treatment regimen that required her to drive two hours every week (in addition to her time in the chair), and often referred to her as a “difficult patient.” I believe nurses have a unique perspective; we see our patients as more than their disease. I will never forget hearing her story, learning that she discovered her breast cancer while breast feeding her youngest daughter. I spoke with her about the importance of treatment adherence, a concept that she was not previously familiar with. After speaking to the provider, we were able to change her regimen so that her appointments occurred once every three weeks instead of weekly; she never missed an appointment again.

Speaking with an oncologist can be intimidating for many people, particularly following a cancer diagnosis, with all of the complicated feelings that accompany it. I have had many people within the health care community ask me to forget about their degrees and discuss their disease, prognosis and treatment options at a basic level free of medical jargon. In order for patients to make informed decisions about their own care, it is essential that they have appropriate information and feel confident communicating with their health care team.

What is your advice for someone who has been diagnosed with cancer?

Some thoughts that come to mind:

• One of the best sources of information I have found is the American Cancer Society. https://www.cancer.org/ They have easy-to-understand resources; it’s a great place to begin.
• Support groups are one of the most valuable resources for patients and their families. Human connection is what brings us together and can provide an incredible source of strength, Today many groups are online and allow people all around the world to connect.
• For friends and family: rather than asking, “What can I do?” I recommend people try to offer clear and tangible help. Ask “Can I come Tuesday to cook dinner or set up a meal train?” instead of open-ended questions. For patients: next time someone asks you what they can do, be specific: tell them to come take out the trash next Thursday. Allowing people in to help you is not only helpful for you, but a gift you can share.
• Get rid of “should.” There is no wrong reaction or emotion when dealing with cancer. Patients need to feel their feelings, no matter what they are. They may cry, or be angry or sad. Although it sounds relatively simple, I have found that this practice, which is essentially mindfulness, is a challenging one to cultivate. It is the practice of sitting with our feelings and noticing them rather than passing judgment. If you notice yourself “messing up,” you have succeeded. Have the courage to begin again.

What have you learned as an ONN?

My experience as an ONN has inspired me to pursue a Ph.D. and think about the questions we ask in the new era of precision health care. As nurses, we have unique perspectives that integrates various stakeholder approaches to research questions and study design.

What do you want people to know about the role of ONNs?

I encourage anyone with access to nurse navigator services to use them. Engage with your nurse, ask questions and know that you have the capability and responsibility to make decisions about your care; we are here to support you every step of the way.