December 2017 VOL 8, NO 12
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Interview with the Innovators
The Art of Effective Navigation: Details That Lead to Success
An Interview with Amy Jo Pixley, MSN, RN, OCN, of Lancaster General Health
The Journal of Oncology Navigation & Survivorship (JONS) covers all aspects of navigation, from peer-reviewed presentations of original navigation research to the value of instituting a navigation program; from the metrics we uphold showing effectiveness in patient experience, clinical outcome, and return on investment to the positive impact navigators have on their institutions and patients. We encourage the expansion of navigation programs and provide guidance for their development. We set goals in terms of metrics and offer credentialing for navigators. But how does this new and upcoming profession look in the micro? How do navigators set up their day, prioritize their workload, institute metrics, and care for individual patients? The publishers of JONS were interested to learn about oncology nurse navigation as it exists in real life—or more specifically, in the life of 1 navigator.
In setting out to answer these questions, the publishers of JONS spoke with Amy Jo Pixley, MSN, RN, OCN, thoracic oncology program coordinator and nurse navigator at Lancaster General Health. Ms Pixley is an experienced navigator who has been part of the field’s expansion as well as an impactful patient advocate at her institution. All of us at JONS are grateful to her for sharing her insights into this field as well as her daily life as a navigator.
JONS To begin, how do you define a navigator?
Ms Pixley There are many aspects to navigation. What comes to mind first is the clinical nurse navigator. The majority of clinical nurse navigators are registered nurses who have specific oncology knowledge and use the nursing process of assessment, planning, implementing, and evaluating to provide clinical assessment and disease- and treatment-specific education and counseling to patients dealing with the complexities of their disease while identifying and eliminating barriers to care.
There are also patient navigators. Patient navigators may be social workers, dietitians, community/lay persons, or volunteers. Many times, these volunteers are survivors of their own cancer diagnosis. Patient navigators have special training to assist patients in eliminating access to care barriers but are limited in providing clinical assessment.
JONS Can you describe a typical day as a navigator?
Ms Pixley It’s truly ever-changing, ever-evolving. I start out each morning by reviewing charts for that day and try to prioritize patient, family, and provider needs for the day. Sometimes this approach works well, and my tasks are pretty straightforward, but then there are those days where something unexpected comes into play.
Just recently, I was ready to see a new patient with a provider when I had a young father call me who had just been told earlier that week that his targeted therapy was no longer working. He needed guidance on how to communicate this to his 12-year-old son. At that moment, he became my priority. I spent time with him on the phone and saw the new patient after that call. When a patient calls with a distressing situation, as inopportune as it may be for my day, their needs should be met to alleviate their stress, so at that moment I need to be there for them.
JONS It sounds like the ability to prioritize is an important skill for a navigator.
Ms Pixley Yes, that’s true. A question I am frequently asked by new navigators is, “How do you know how to prioritize?” Much of this comes with experience. For example, the new patient is going to be the one who’s more emotionally distressed and has high anxiety, and we need to figure out if there are going to be barriers that will prevent him or her from moving forward. This patient is your primary focus.
We then further delineate. If I have 2 new patients, and one’s surgical and one’s a metastatic patient, I’m most likely going to see my metastatic patient before my surgical patient knowing their anxiety is going to be much higher. I also use the phone as a tool to catch up with patients whom I couldn’t see. Many times, I ask patients over the phone to review what was discussed with them in clinic, and what questions came to mind after they left. I usually ask “What’s weighing heavy on your heart right now?”
There are many facets that go into a typical day. Some days, it’s just not yours to plan, and you just roll with it, addressing each situation as it arises.
JONS You’re constantly assessing the distress level of your patients and prioritizing your workload based on that assessment. Can you estimate how much of your time is spent addressing the psychosocial needs of your patients?
Ms Pixley Probably 75% of my time is spent that way. Relatively speaking, educating patients on their disease and the proposed treatment plan is the easy part. The hard part is assessing what it means for the patient in the context of their life. How does this diagnosis impact the primary breadwinner of the family versus a retired person?
Once we understand the implications, we move to empower patients. At the very beginning of care, I advise all of my patients to say this is a chronic disease. I don’t care what stage you are. This is going to be a chronic disease, something that every physician you see, any time you fill out a medical history, you’re going to report your cancer, just like somebody who has diabetes or congestive heart failure. We may not be able to cure this, but our goal is to continually treat you and keep you as healthy as the dimension of the disease will allow us.
Some situations are easier to manage than others. But the majority of our time is spent dealing with the aftermath of that diagnosis and treatment. Every time we come to a decision point, there are emotional challenges and changes. It means something different to each patient at each intersection.
JONS What distress screening tools do you use? And once you’ve identified the distress level, what can you do to alleviate that distress?
Ms Pixley Something that we implement within my institution is the National Comprehensive Cancer Network Distress Thermometer. We have been using this tool pretty exclusively, and we’ve been able to include it in our electronic medical record. It’s easy for the patients to complete, whether on their own or with a member of our staff. The navigator can quickly run down the list looking at practical issues, their psychosocial status, or physical and spiritual aspects of their distress, and then determine what is impacting those factors the most for that day.
We typically use the Distress Thermometer during high stress points, such as initial diagnosis. Sometimes a patient’s score on that thermometer will change at the completion of their appointment just for the sheer fact that they received answers to their questions. They may have come in at a heightened 8 on their distress scale because of the decisions they needed to make, but once that consultation has happened, they may be rating themselves as a 4. Then it’s a matter of figuring out how to address that 4.
Addressing patients’ distress largely depends on the underlying cause; we typically look at how much of this anxiety was preexisting versus something brought on by their diagnosis. Once we determine the cause, we can implement tactics to reduce their distress. For example, if the stress is related to physical symptoms, we might consider their need for education on how to self-manage some of the symptoms and side effects they’re feeling, or I may pull our symptom management clinicians to assist in developing a strategy to help the patient with the physical symptoms.
In considering emotional distress, we might suggest employing integrative therapies, such as yoga, meditation, Reiki, acupuncture, and massage, or they may require counseling, psychotherapy, or perhaps psychiatric and pharmacologic intervention.
Sometimes it’s a matter of recommending a support group. At our institution, we have a caregiver support group that I recommend quite often, and we also offer a few patient support groups based on diagnosis. Or maybe they need to meet with their religious leader or even our chaplain for spiritual counseling. This can be helpful for those patients who are angry and questioning “why me?”
There are other issues that come out of distress screening, such as transportation issues, challenges with child care, or self-care. For these issues, we mobilize social work and community resources.
JONS Do you find people are pretty accurate in their self-assessment?
Ms Pixley Most of the time they are. I do believe some patients will underscore physical symptoms out of fear that their plan may be altered or that treatment will be delayed. Sometimes the subtle art of a navigator is to get to know patients throughout the continuum of their care and understand nuances that may require further inquiry. If I see a patient who looks like they’re not having the best day, I’ll ask the question to discover what’s going on for them. Through that asking, they may share a concern. That allows me the opportunity to bring up the concern to the physician if the patient does not. This exchange allows the conversation to unfold naturally, and that little prompting makes the difference.
JONS Can you describe the impact of your navigation program on patient outcomes in terms of the AONN+ metrics of Patient Satisfaction, Clinical Outcomes, and Return on Investment?
Ms Pixley When I first started in my current position, one issue we wanted to address was timeliness of care; specifically, time from presentation to diagnosis and time from diagnosis to first treatment. In completing a chart review, I was able to determine that it took approximately 82 days from a suspicious lesion until a patient was diagnosed and first treated. I proposed that if we had a nurse specific to each disease state, we could expedite care and also improve patient satisfaction because they would have 1 contact.
I was able to implement this strategy, and within the first 6 months of program implementation we were able to decrease the time from presentation to treatment from 82 days to 60 days. At that time, the metrics we focused on were clinical outcome and patient satisfaction, we weren’t yet focused on return on investment. And while we were diligent in our efforts to impact clinical outcome, we were equally encouraged by our impact on patient satisfaction. Patients were happier if they only had 1 person to communicate with, and there was also a correlation between timeliness of care and patient satisfaction. Reducing the timeframe from suspicious lesion until treatment also reduces patient distress. The longer that process takes, the more it waxes on their souls and causes distress.
JONS That is a great success story. And I’m sure that success in addressing timeliness to care through navigation helped your navigation program to grow.
Ms Pixley Our program has definitely evolved, and we have expanded to 6 site-specific navigators.
JONS As you have grown, has return on investment become a focus for your navigation program?
Ms Pixley Yes, return on investment is certainly a focus for most organizations now. Because of this, we ensure that we are identifying barriers to care and immediately align our patients with appropriate resources. That could be community-based resources such as transportation, which helps maintain a low no-show rate. We also complete a thorough follow-up to ensure patients understand the education they received during their chemo education by our clinical staff. This helps ensure that patients do not utilize the ER if they have nausea and vomiting because they didn’t remember how to take their meds. We’ve been able to demonstrate reductions in our ER visits and hospital readmissions based on better symptom management control. And if you increase patients’ adherence to their medications, you definitely have better patient outcomes as well.
It’s interesting how the metrics are intertwined. In reducing ER visits, there’s an obvious cost saving, but there’s also improved clinical outcomes, and of course that also impacts patient experience.
JONSCan you speak about the role of nursing research and building evidence-based practices?
Ms Pixley From a research perspective, it is systematic scientific inquiry that validates and also enhances the existing research. By integrating that research with clinical experience and patient values, it allows nurses to challenge our current status quo. With the massive evolution in cancer care over the past years, we’ve inspired nurses in oncology to welcome a sense of inquiry. Long gone are the days when we had to rely on what always worked in the past—the “if it’s not broken don’t fix it” approach. We simply can’t approach care that way anymore.
For example, years ago we didn’t allow patients to go out of the house if they were neutropenic. Well, there are no clinical data indicating that neutropenic patients have to be isolated. So we’ve been able to change practice over the years because we’ve completed the nursing research, and then we’ve been able to put it into practice.
Our nursing code of ethics stipulates that as nurses we’re accountable and responsible for our own practice, we’re obligated to promote health and provide optimal care. Regardless of our practice setting or job description, it’s on us to advance our profession of nursing, and it’s through research and development of our inquiry.
Evidence-based practice really forces us to critically assess and relate nursing research so we can have a better overall understanding of clinical decision-making, which then transcends into enhancing patient care, identifying standards of care, and standardizing quality measures, especially when it comes to process improvements or clinical outcomes.
JONS How can metrics be used to improve the quality of care in an individual institution, whether it be academic or community-based?
Ms Pixley Especially in this era of value-based healthcare, metrics not only help define navigation practice but they will measure the quality of care patients deserve. Establishing metrics goes hand in hand with improving outcomes and advancing the value and work within navigation across the disease trajectory. I’m hoping down the road we can complete comparison analyses on how like-minded organizations can compare and contrast best practices, whether it’s in specifying gaps in our processes or setting up standards of practice. In this way, we will be able to measure the true value of navigation services. It forces us to focus on best practice and to continually strive for improvements and help an organization better identify their performance gaps and track progress.
JONS Any advice for navigators just starting out in the field?
Ms Pixley It’s extremely important for a new navigator, whether clinical or lay, to find out what support systems are in place within your organization that help you to execute your job most effectively.
It’s also important to realize that even though you are the single point of contact for the patients, you can’t do it all. Even though the patient may contact me, I don’t need to take ownership of all the scheduling, setting up a treatment plan, or calling insurance. There are people within organizations who can assist you in doing that. The last thing you want to do is take full ownership and be the only one who can do for a patient. Part of the job is delegating as well as empowering the patient. If you try to take it all on, and inevitably have to walk away, the patient may feel abandoned. At no cost do you want to leave them feeling that way.
Delegating is a self-preservation tactic as well. We’re only going to be as strong for our patients as we are for ourselves. We need to practice self-care. This can be an issue for new navigators. It’s important to set and maintain your boundaries.
JONS Thank you so much for speaking with us today, and we wish you continued success.
Ms Pixley Thank you. It was a pleasure.
Ms Pixley is a thoracic oncology program coordinator and nurse navigator at Penn Medicine Lancaster General Health in Lancaster, PA. She received her BSN from Bloomsburg University and her MSN from Walden University. In her current role, Ms Pixley has worked with the Association of Community Cancer Centers on various projects related to molecular testing in lung cancer. She has presented at the Academy of Oncology Nurse & Patient Navigators (AONN+) Best Practices in Lung Cancer and the AONN+ Annual Navigation and Survivorship Conference’s thoracic breakout sessions.
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