There is so much hope in lung cancer today. But lung cancer is also inherently very complicated. And the process of getting to a treatment plan takes a lot of expertise, different members of a medical team and lots of tests. And one way to make this process easier on patients and more efficient for doctors who are making those treatment plans is to use an expert called a patient or nurse navigator.
Charity Holien, RN, a nurse navigator with the University of Colorado Cancer Center
Ross Camidge, MD, PhD, Director of the Thoracic Oncology Clinical and Clinical Research Programs at University of Colorado Cancer Center
Video Podcast on YouTube | Transcription
What is the difference between a patient navigator and a nurse navigator?
There’s a difference between patient navigators and nurse navigators. Patient navigators are non-clinical, meaning they support patient care, but their work does not provide direct diagnosis, treatment, or care for the patient. Used more in the community setting, patient navigators connect patients with either a health system or providers.
A nurse navigator, such as Charity Holien, is a clinical-based provider. In her case, Charity as a registered nurse, understands and explains the medical jargon for new patients or existing patients. She gets them connected to a provider or health system. A nurse navigator is a central person connecting that gap between a patient’s diagnosis and connecting the next steps for personalized treatment.
Connecting the Dots for a Lung Cancer Patient
Often there can be a massive gap between “I’m so sorry you have lung cancer” and “okay, here’s what we’re going to do about it.” It may be days or weeks or even a month or two months sometimes to get all of the information that a patient needs to move into treatment.
“And I knew that there was always this need for a navigator in our clinic. And some of the main reasons why is because of exactly what you said with the gap is there was nobody really to talk to a patient until they came in for that provider visit.” – Charity Holien, RN
Charity sees her main role is to make that connection with the patient right away – introduce what she does, who she is, and what her team does. And she then goes on to the big things, especially for new patients, explaining what things need to be done, what things need to be worked up, and why it may take a few weeks.
The Difference a Nurse Navigator Can Mean to Lung Cancer Patients
Often, just hearing these things from a nurse navigator really helps reduce the anxiety for patients. Once a patient hears they have that lung cancer diagnosis, so many things are going through their head. A navigator’s main objectives is to connect with those patients by giving them the information, educate them a little bit more about making a plan, and then go through the process of getting them set up with their facility. Sometimes a nurse navigator can get some pieces in process before they come.
“So, I think that I’m a big advocate for the navigators because I’ve seen. I’ve been in a facility that doesn’t have one. And then I’ve noticed personally what a big difference a navigator can mean to patients.”
When you’ve been told that you have lung cancer, often it feels like now you need to do something this minute. But it’s so important to get all of the detailed information and there’s so much that goes into it. To the newly diagnosed, there’s no reason that they would know that. So, that’s part of nurse navigators’ work: providing referrals to a dietician and financial resources, social work but even simple things like where to park at the facility, what elevators to take. These little pieces of information from a navigator relieves a big anxiety for some patients
Lessening Anxiety with a Nurse Navigator
A lung cancer diagnosis leads to many questions. How am I going to pay for treatment? Or how do I physically get to the clinic when I don’t have a car? Again, those are a lot of anxiety for patients. As a nurse navigator, Charity will connect them with their social worker and their financial team right away. They make phone calls and start talking to patients about those logistics. Sometimes there are grants at a facility and that is something the social worker can help with. So, some of those referrals a nurse navigator can get in place at the beginning, or after that first visit. Almost everybody Charity has talked to has wanted to get things in place before seeing the doctor.
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Gathering Information for Oncologist Treatment Planning
While the nurse navigator’s job is corralling all of the information, it’s the thoracic oncologist that makes a treatment plan. Charity works with Dr. Ross Camidge at the University of Colorado Cancer Center.
“Well, I should point out that we didn’t have a nurse navigator for a long time. So, the absence of a nurse navigator isn’t inherently a bad thing, but then when you do get one, you really realize their true values.“ – Dr. Ross Camidge
As a nurse navigator, Charity performs a number of different roles. She introduces herself to the patient, she makes them feel like there’s a human being who cares. But then on the backside, she has technical expertise to make sure that if you’re coming in to see the doctor, there are no missed gaps. All of the data in that pathology report, the scan reports, everything is there, so that the doctor and you can have the most useful interaction. If you’re coming from out of town, the nurse navigator is going to make sure that if there are things that have to be done, repeat scans, that she’s going to try and bundle them together in the time that you have available.
A nurse navigator can help smooth all of those things. It doesn’t mean that without a patient navigator program, that’s a problem. However, a patient navigator is incredibly helpful at gathering up all of this data that you need – tests, scans, etc. This task may be really difficult for someone unfamiliar.
“I think, once you’re in the medical system, you start to generate paper. And I think the challenge is particularly if, you are just the recipient of this medical care, you don’t know which stuff’s important. And chasing down 15 pages of blood tests, which the doctor doesn’t care about isn’t useful. Whereas Charity is so experienced. She can say, look, you need this, this and this. And she can also come to me and say, is this enough of information? A few days before the appointment. And I can say, well, everything’s there, but this bit’s missing. And it’s about having a trained set of eyes making sure everything’s there.” – Dr. Ross Camidge
It’s the nurse navigator’s job to make sure everything’s there. They help get the right information to the right people or even maybe the patient to the right person.
“But I think what you really want in a navigator is to believe that you’re scared. But you’ve spoken to this person on the phone. So when you arrive, there is the equivalent of a familiar face there to greet you and that they have your back. They are not going to let you down until you have a plan and you know where you’re going to next.” – Dr. Ross Camidge
Although a nurse navigator doesn’t stay with the patient forever, they will move you on and pass you over to someone. And she’s only going to step back when another person is taking you over and you have a plan in place.
What about someone who doesn’t have access to a patient navigator?
Dr. Camidge didn’t have a patient navigator program for a number of years but had a good team which gave redundancy. Everybody is double checking and triple tracking somebody. He thinks a navigator is a nice to have, it is by no means essential. And if you don’t happen to have access to one, it doesn’t mean you’re getting inadequate care.
“I mean, that honestly, I think if you had to sum a navigator up in a word it’s about trust, you trust the navigator to have your back. I think as the field gets more and more complex, we are going to need this. You can’t just plug and play everything these days, and so you are going to need a wing man – or woman – to help you through these things.” – Dr. Ross Camidge
LCFA is hopeful that a nurse navigator is something that more and more hospitals or academic institutions might put into place to help people navigate their lung cancer journey.
A Lung Cancer Diagnosis: What’s Next