Nurse navigators at HUP’s Abramson Cancer Center (ACC) serve as a guiding light for cancer patients and their families. By helping to eliminate barriers to care, they lead families through what can be a complicated and overwhelming process.
Theresa knows this firsthand. Her husband had just undergone surgery for a brain tumor at another hospital but she wanted him to get the rest of his cancer care — chemotherapy and radiation — at HUP. She found Eleanor Miller, MSN, OCN, manager of Oncology Nurse Navigation, on the ACC navigation website and emailed her for help. For Miller, it was a straightforward navigation but for Theresa, the looming road ahead seemed terrifying.
Gathering medical information about the patient’s condition and discussing their goals and options for treatment, Miller was able to walk Theresa through the next important steps in transferring her husband’s care. Thanks to Miller’s efforts, the patient was registered in PennChart that same day and had two appointments for the following week — in medical oncology and radiation oncology — to keep his treatment moving forward.
When Miller called Theresa with information about the appointments, “she gave a sigh of relief and said ‘I was up at 3:30 in the morning thinking how complicated it would be, but this is so smooth.’ We took the burden off of her. It made me feel good to help.”
Getting the Patient to the Right Doctor at the Right Time
HUP’s ACC has nine nurse navigators to help guide patients, each assigned to a specific type of cancer, e.g., neuro-oncology, melanoma, etc. to match the subspecialties of oncologists in the Perelman Center and across the health system. As a result, “we work closely with and get to know our doctors well and learn who does what,” Miller said.
Navigators take many factors into consideration when deciding what’s best for a patient, Miller explained. For example, should the patient keep moving forward with treatment at the other hospital until they’re plugged into Penn or make the switch immediately? “We do a lot of shared decision making with patients and families,” she said. “That’s where nursing judgment comes into play. Based on our nursing assessment and the patient’s situation, we help figure out what doctors to see and what we can do to keep patients moving forward and not delay care.”
When comorbidities are present — such as heart problems or diabetes — a navigator’s help is even more critical, said nurse navigator Suzanne Sweeney, MS, BSN, who works with genito-urinary cancer patients. “It’s trying to piece together what’s going on and get the patient to the appropriate providers,” she said. Such was the case for a young woman who called about getting her uncle into HUP for prostate cancer. The 72-year-old patient, who had been admitted to another hospital, had several other acute conditions that had to first be addressed. After Sweeney took the time to explain, step by step, what needed to be done to transfer care to Penn, the woman told her, “You’re the first person I got to talk to and talk through everything…. This is what is happening and why and where do I go from here.”
“The majority of navigation at ACC is access, getting patients in to the right provider at right time,” Sweeney said, adding that as part of Patient & Family Services in the ACC, nurse navigators also have easy access to other services patients might need, such as social work, dietiians, and cancer counseling.
Even after the initial connection, navigators encourage their patients to reach out if they need anything. “I still receive calls from patients I helped get set up. They feel lost, overwhelmed,” said Molly Cassidy, MSN, who works with melanoma patients. She encourages them to call, telling them, “Even if you’re not sure if I’m the right person… I can direct you to the right place.”
Most of a navigator’s communication with patients is through the phone or email but — pre-COVID — navigators would often meet new patients when they came to the clinic for an appointment. “I’d tell them to call me if they need anything and I’d tell the staff to let me know if I can help the patient,” Sweeney said, adding that she missed this one-on-one with patients.
But, even though COVID-19 has impacted cancer patients in many ways, “our navigation services have remained uninterrupted,” Miller said. “We learned and incorporated information about COVID-19 precautions, testing and vaccines in our day-to-day education so we could explain to patients.”
The Emotional Side of Patient Navigation
Beyond helping with logistics, providing clinical information and education, and answering questions, “emotional support is woven throughout our involvement, every step of the way,” Miller said. “As navigators, we work with so many new patients whose world is turned upside down. We can refer patients or family members to social work if they have greater psychosocial needs but often just speaking with patients helps.
“It’s a lot of validation about their emotions, talking through uncertainty and naming it,” she continued.
One of her patients, a nurse, has a great understanding about health care but “she still calls me every couple weeks, filled with anxiety.” They talked through strategies to cope, such as doing breathing exercises and mindfulness, but the patient said, “every time I do those, I cry so I don’t like going there.” Miller replied, “Maybe you need to cry.”
These candid conversations help, Miller said. She recalled a mother whose 50-year-old son had a brain tumor. He had been in and out of the hospital for a few months and his condition was declining. “I called his mom to check in — I had heard the patient might go into hospice. We had such a wonderful conversation about end of life, what should she expect [such as a decrease in appetite or sleeping more],” Miller said. “Just giving her an opportunity to talk — allowing her space to share about faith and acknowledging that it’s a source of strength — was impactful for both of us.”
Even though he’s going to hospice, she told the mother that “we’re not abandoning them; we’re still here to help and offer support. That’s reassuring, even at end of life, if they need us.”
Each year, the nurse navigation team works with thousands of patients, — both new and established, — within the Cancer Center, resulting in tens of thousands of encounters. “The thing I always emphasize about these impressive numbers — and that I am proudest of — is that yes, it’s a lot of people, but we take care of each of them, one by one, to provide compassion and individualized care,” Miller said.
Perhaps the strongest recognition of the impact of their work comes from referrals by patients they’ve helped. Peg Rummel, MHA, RN, OCN, nurse navigator in oral, and head and neck cancers, got a call from a patient whose son was diagnosed with prostate cancer. “The mother asked, ‘Is there someone like you in the prostate cancer world?’ So Peg connected me,” Sweeney said. After speaking with the mother of the patient, a 50-year-old man with special needs, the mother sent Peg an email.
“I can’t thank you enough for putting me in contact with Sue. She put all my fears at ease. I felt so much better after speaking with her. I know my son is in good hands with the Abramson Cancer Center.”
To learn more or contact the ACC nurse navigators, email Eleanor.Miller@pennmedicine.upenn.edu or Heather.Sheaffer@pennmedicine.upenn.edu.