Recently, an article was published in the Leader about my work with patients with head or neck cancer. The response has been great, with the most-asked question being about the pathway I created to help patients and caregivers navigate through and receive improved access to care.
How did I create this pathway?
The first thing I did was listen to patients and caregivers discuss what they wished they knew before treatment started. After years of listening, I realized something had to change for them. From this realization came the idea of designing a pathway so all treating partners—as well as patients and caregivers—understood the process, what to expect and how to prepare for next steps.
After deciding to create this process pathway and getting it approved by the hospital cancer board and then general board, I contacted all treating partners. Everyone on the diagnosing and treating team for head or neck cancer patients received instructions on the pathway organization and what we as hospital staff would provide patients and caregivers. This way, every member of the treatment team knows what patients are expecting, can address any questions, and make sure all steps in the pathway are followed.
So, how does the pathway work?
First, the otolaryngologist (ENT) makes the diagnosis of head/neck cancer. At that point they make the following referrals:
- Medical oncology
- Radiation oncology
- Gastrointestinal specialist for percutaneous endoscopic gastrostomy (PEG) tube placement before treatment starts
- Oral surgeon for dental extractions prior to start of treatment
- Speech-language pathology for baseline swallow assessment
- Oncology dietitian
- Nurse navigator to assess barriers to care
Patients meet with each specialist before treatment begins. These meetings help patients and caregivers gain awareness of exactly what treatments and rehabilitation strategies to expect, the approximate number of sessions in each area, and potential outcomes and side effects of treatments.
The nurse navigator serves a critical role in making sure patients and their families know how and are able to access what they need, such as obtaining necessary funding, working out transportation to and from treatment or rehab sessions, and other logistics.
Next, I felt the patient and their families or caregivers needed as much education as possible before chemo/radiation—not to scare patients, but rather to give them knowledge, expectations, information about possible side effects and things to look out for. We created a “guidebook” binder for patients to use as a reference. It includes websites, cookbooks, a calendar, support group information, possible chemo/radiation side effects, members of the hospital’s head/neck cancer team and our roles, definitions of the many tests/scans they may undergo, and many more details about the entire treatment process.
Receiving all of this information at once might feel overwhelming at first, but it gives patients and caregivers the power to know what questions to ask and to find their own answers.
Third, we offer a free education class for patients at time of diagnosis. Our team includes an SLP, nurse navigator, oncology dietitian and rehab navigator. During the class, we take turns addressing barriers to care, so patients and families can resolve them before treatment and rehab begin. Our goal in doing this class is to have everyone’s treatment proceed without interruption.
Some strategies we use during class include:
Our dietitian has a doll with a PEG and gives hands-on education of how to use the PEG tube, proper nutrition (individualized for the patient), and problem-solving tips.
I—or another SLP—completes a baseline swallow assessment. Many patients already have dysphagia and might not even know they do. The assessment allows the patient to adjust their diet to reduce risk of aspiration and also to prepare for adjustments during rehab.
The rehab navigator discusses potential rehab needs during or after treatment, such as physical, occupational and lymphedema therapy.
Finally, I invite them to the monthly head/neck cancer support group I facilitate. All patients, survivors and caregivers can attend as long as they need. Some meetings are open forum where we discuss and share information with one another. And at some gatherings, I arrange for guest speakers—usually members of the treatment or rehab team—to discuss specific topics. The support group significantly benefits this population, as many of them face social withdraw and/or depression with the diagnosis—as do their caregivers.
We’ve discovered that patients who follow the pathway and all recommendations by the head/neck team have better outcomes: better management of chemo/radiation side effects, less weight loss, faster PEG tube removals after completion of treatment, better management of lymphedema, and overall fewer issues that interfere with their successful treatment and rehab.
For me, this pathway lets me improve the lives for my head or neck cancer patients, whom I absolutely adore! Please feel free to ask questions in the comment section below or share any processes you’ve set up to make things go smoothly for your patients or clients.
Stacey Brill, MS, CCC-SLP, is a clinician at Lee Health in Fort Myers, Florida. She also organizes free screenings for possible head/neck cancers, hosts an annual 5K fundraiser for head/neck cancer patients across southeast Florida, trains therapy dogs, and gives an annual dinner to raise awareness about head and neck cancers. sbrill@aol.