Jenny Marais, RN, BN, OCN, is the author of the new book, “Navigating Your Cancer Journey: A Handbook for Cancer Patients and Caregivers by an Oncology Nurse Navigator.” She is an oncology nurse navigator for a West Coast health system. Jenny spoke with NurseNavigation.com about the book, which was published in February by Dog Ear Publishing, and her experience working as a nurse navigator.
Q: How would you describe your book?
Jenny Marais: My book is like a toolbox, full of tools and information cancer patients can use as they journey along their treatment plan. I found out as a navigator that a lot of the time my cancer patients are at home on treatment and lack access to resources.
I wrote my book because I wanted cancer patients to be able to have one resource where they could have their questions answered. It provides information I feel is very important for cancer patients to have at home during their cancer journey.
Q: What is your background in nursing and navigation?
JM: I was an oncology nurse in acute care in South Africa, where I trained, and, for a time, here in the United States. I’ve been a nurse for a long time, and really loved oncology and acute care work.
I didn’t know much about navigation until a position came up about four years ago. After I was hired, I was amazed by the amount of resources there were available for cancer patients that I knew nothing about as an acute care nurse.
Going from hospital care to nurse navigation and working with patients in their home was a big transition for me. I found that it was a completely different world. When you think of the world of cancer nurses, they treat patients in hospitals and have pretty much what they need right at the bedside. I think you only really begin to realize the complexity of care when you are working with these patients and caregivers outside of the hospital. It is a completely different world.
As a nurse navigator, I think you learn something new every day because every day is different. You have problems that pop up for one particular patient this week, and just a month later you may have to deal with a completely different set of problems. You are constantly learning as you navigate. It’s an incredibly interesting job.
JM: The big motivation for me was when I realized how important it is that patients receiving treatment make the right choices. It struck me that there is so much good and vital information out there that patients need but this information is not readily accessible to many of them. Unfortunately, visits with providers, nurses and doctors, tend to be short. We just don’t have a lot of time to give patients really good information. But as I’m always saying to patients: Every choice you make matters, and you need good information to make the best choices.
For example, if patients who are neutropenic get a fever, they need to know that if they break 100.5 degrees outside of office hours and do not have an oncologist on call, they need to come into the emergency room, or wherever their providers told them to go for help. They can’t just take Tylenol and climb into bed like the rest of us. They could go into septic shock within a couple of hours.
As another example, cancer patients may not know they can’t take an oxygen cylinder on a plane. If they are planning a trip, they need to think about an oxygen concentrator.
This is information that’s not readily available in a single resource. You can certainly go online and look up what happens if a cancer patient has a fever of 100.5 degrees or look up flying and see what needs to be done if they require oxygen. But when you’re sick, you just don’t often have the time or ability to search for basic information all patients should have. This is not rocket science; it’s just basic good information an oncology patient can use to help them make the right choices at home.
When I became an oncology nurse navigator, I found that patients who don’t have a lot of information are at a huge disadvantage. They can change the whole course of their treatment by making one wrong decision. They need to have the right choices presented to them, and a book with all these bits of information is what I think has been missing.
I hope my book helps fill that void. It’s exciting to publish this now as I believe navigation for patients is going to grow significantly in the future.
Q: Why do you think patients dealing with a cancer diagnosis should read your book?
JM: As I said earlier, every choice made matters. When cancer patients are on treatment, they need to be aware of the many things that can go wrong if they do not look after themselves in the right way. I think they need to be aware of the importance of being informed and have to be proactive about getting their hands on the right information in order to look after themselves.
They also need to be aware that they have power, and can actually change outcomes by making the right choices. If they look after themselves, watch their diet, stay hydrated, get their relaxation in, call their providers when they need to, all of these things will help them stay on their treatment plan.
Q: Why is work of a nurse navigator so critical in today’s healthcare system?
JM: Within our organization, we have several different hospitals. Our patients receive the care they need and meet with various providers at different campuses. They may need to drive 30 minutes for chemotherapy, 30 minutes to see their radiation oncologist, 30 minutes to see their primary care physician if they have an issue with their blood sugar. Their care is very fragmented.
When patients receive treatment and meet with caregivers at different locations, communication between providers can become more difficult. We have different electronic medical record (EMR) systems at different facilities that cannot easily access records from one another.
A nurse navigator is like a GPS for a patient. Navigators can coordinate care: they call facilities and make sure patients have the information they will need at different locations. Navigators are a point of contact, not just for patients and their families, but providers as well if they want certain tests done, blood results or to contact the patient.
Our providers understand our role as nurse navigators is to be the point of contact. They will call and ask us to check up on a patient and make sure he or she received the correct information. My job is to make sure that I coordinate this effort that can include making sure authorizations go where they should, that patients get the required tests at the facilities that need them and receive any necessary lab work, for example.
There’s a lot that a navigator does. I quite honestly do not know how patients are able to do all of that on their own.
Q: What challenges do nurse navigators face?
JM: For me, the top challenge is obtaining access to all of the patient information I need, especially if patients are receiving care at different facilities, which happens time and time again. Depending on the location, it can be more difficult to get access to chart records, blood results and anything else I might need to help facilitate care and keep patients on track.
The next disadvantage is geographical location. I’m not always physically in the same location as my patients, so if I need to meet up with a patient, I often have to do it over the telephone. I don’t like that approach. I would much rather meet face to face .
When you have multiple facilities located on different campuses, you often do not get to see your patients face to face as much as you would like to.
Q: What do you see as ways or opportunities to improve nurse navigation?
JM: I think there are tremendous opportunities to grow the programs, and the stronger we get as nurse navigators, the more we’ll have the resources needed to grow our programs.
Another important part of effective navigation is the emphasis that needs to be placed on relationships. We have to build up relationships between facilities. I think that comes with time. Navigators have to pave the way for a good working relationship with people at many different facilities.
Also, quite a few physicians do not yet understand or appreciate the role of a navigator, so navigators have to educate providers on what we can and cannot do.
Q: What would you say to an organization that is contemplating whether to implement a nurse navigation program?
JM: My message would be that they can’t afford not to implement a program. The role of a nurse navigator is too valuable to the oncology patient.
The feedback we get from our patients is tremendous. They find nurse navigators extremely helpful. We’re a source of comfort. We serve as a safety net. We take away a lot of anxiety when it comes to coordinating appointments.
It’s all about improving the patient experience. We, as nurses and providers, want to provide excellent care and give our patients the best possible experience.
This is especially true in oncology, where many patients are critically ill. That is extremely traumatic. They are affected socially and financially, and that can extend to patients’ families. To have a nurse navigator at their side — someone they know and trust — makes the journey so much better for many of them.
I think many providers who do not have experience working with navigators really don’t know about the value a navigator can bring to their practice. Patients see providers at an office visit, and then they go home. They may remember questions they wanted to ask or have new questions that come up. By having a nurse navigator, patients need to make only one call to their navigator to get the answer to the question.
It is important to note that an oncology nurse navigator is not for everybody. There are patients who come in, receive treatment and that’s all they need. They want to keep their contact with the medical world down to the bare minimum. There are people that could have access to a navigator who choose not to, and that is also absolutely fine.
Patients need to have a choice. They need to be told that there’s a navigator available to help them navigate the system if they would like one.
Q: What do you hope for as the future for nurse navigation in the United States?
JM: I hope that one day, every single oncology patient will have access to an oncology nurse navigator. That is what I really hope for.