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Nobody Understands What I Do as an Oncology Navigator

May 20, 2021 | AONN+ Blog | Navigation
Featuring:
Lillie D. Shockney, RN, BS, MAS, HON-ONN-CG
Lillie D. Shockney, RN, BS, MAS, HON-ONN-CG
Editor-in-Chief, JONS; Co-Founder, AONN+; University Distinguished Service Professor of Breast Cancer, Professor of Surgery, Johns Hopkins University School of Medicine; Co-Developer, Work Stride-Managing Cancer at Work, Johns Hopkins Healthcare Solutions

I often hear from patient navigators and nurse navigators that no one understands what they do. When I ask these navigators how they explain their role to their coworkers, they say “I navigate the patient.” This is the problem, using open-ended and unfamiliar terms leaves your coworker with more questions. Be more specific and give examples if the length of the conversation will allow.

Some questions your colleagues may have include:

  • When do you meet the patient the first time, before or at the time of diagnosis?
  • What is your role at that time?
  • What kind of patient education do you provide?
  • What is a barrier and how do you identify them?
  • What solutions do you provide?
  • What is psychosocial support?

As navigators, we can touch every part of the patient’s life. We can even assist their family members and caregivers by:

  • Connecting them with a support group
  • Discussing barriers to care
  • Providing resources for barriers such as financial toxicity.

Here is an example of helping a patient’s family member:

The patient’s husband was very distraught when he learned his wife had advanced cancer. He is accustomed to her being the fixer of everything. I was able to connect him to a group of metastatic breast cancer husbands/spouses/partners online which I run every other week. Now he is directly supported by me and doesn’t feel isolated knowing there are other husbands dealing with the same fears. We work on discussing their feelings and how they can be helpful.

The people in this group all need tasks to do so they feel like they are helping in some way. They talk a lot about their young children and feel they will not be able to raise them alone. I discuss with them who among the family members can help them and confirm for them that no one expects them to do this alone.

We cover different subjects at each meeting including palliative care, financial concerns, and what kind of resources I can provide. We discuss coping with teen distress; teen boys are not good talkers, but their dad can usually coax them out of their shell. Teen girls are frightened and need honesty as to what is happening with their mom. I also talk about the importance of not placing too much of a burden on teens by expecting them to become overnight adults, by cleaning, cooking, doing laundry, picking up siblings from sporting events, etc. They still need to be teens too; have them go out with their friends on Friday nights to the movies and thank them for pitching in too.

Oncology nurse navigators assist with the patient’s needs, helping them to feel empowered with information so they can actively and confidently participate in the decision-making of their treatment.

For example, if a breast cancer patient I am navigating and supporting has the option of doing lumpectomy, mastectomy, or mastectomy with reconstruction, I will begin by asking her:

  • What is your relationship with your breasts?
  • Is this your best feature in your opinion?
  • Do you remember the day you got your first bra and was that a happy day?
  • Are your breasts erotic to you?
  • Do you enjoy bra shopping?
  • Do your bra and panties usually match?

The answers to these questions tell me a lot about how hard, or not so hard, we need to work to preserve her breast. We also need to learn the rationale behind these answers, and ensure the patient knows what certain options truly mean.

I will also ask about any milestones coming up over the next 9 to 12 months so I can make the entire treatment team aware and dovetail the treatment around these important events. Some things to consider:

  • We shouldn’t be doing a mastectomy with tissue expander surgery a week before her daughter is getting married.
  • If the patient is still working during treatment, then I need to help get her scheduled for early morning radiation appointments or early evening appointments to fit her schedule.
  • I need to know her life goals—where does she see herself 1 to 10 years from now?
  • Does she plan on a family in the future? Fertility preservation may need to be arranged, which I can do before any systemic treatment is even considered.
  • Is she studying to become a concert pianist? I will need to make the medical oncologist aware, so she doesn’t get drugs that cause peripheral neuropathy.

Once these things are discussed, I will ensure there is little wait time between appointments for the pathway of treatment. I will stay in touch with the patient between visits, ensure they know when their next appointment is, connecting them with transportation if needed, and making sure she knows when her next appointment is, providing her free transportation if needed, and monitoring medications.

I am the patient’s touchstone. When they have a question, no matter what phase of treatment it is related to, usually I am the first one called, lifting that burden from the providers. Perhaps most importantly, I am the patient’s advocate and serve as their voice at tumor board meetings and case conferences where treatment planning is discussed. I remain in touch with the patient across their continuum of care and into survivorship care or end of life.

Now do you see how providing details is better than just saying you navigate your patients? Members of the care team need to understand what you do, when you do it, why you do it, and how you do it. Consider sharing the metrics measurements that you track. When others understand your purpose and how it relates to their work and the patient’s care, they can then value your role as much as you value yourself. You might even want to ask them individually what they do, too!

Related Articles
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Sleeping more isn’t the solution to combat the chronic fatigue caused by chemotherapy, immunotherapy, and radiation therapy. So, what works and why aren’t cancer patients told about it?
Evaluating the Correlation of Breast Cancer and Divorce
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Some studies suggest that a breast cancer diagnosis correlates with divorce rates. Oncology navigators can assist patients who may be experiencing relationship troubles by keeping an open line of communication.
Uncertainty as the Pandemic Continues
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September 6, 2021 | AONN+ Blog | COVID-19
As the COVID-19 pandemic continues on longer than we anticipated, oncology navigators need to check in with their patients to evaluate their mental health in this time of uncertainty.

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