Though vaccination rates continue to rise, and the promise of lifted restrictions is on the horizon, many are still feeling the sting of loneliness brought on by the COVID-19 pandemic.
Building and maintaining relationships while staying at arm’s length has been challenging — but the impact of a year of isolation has perhaps been most profound for cancer patients, survivors, and caregivers. Rates of stress and anxiety have skyrocketed, many loved ones cannot accompany patients during appointments and treatment visits, and support groups that offer comfort and inspire resilience have not been able to meet in person, despite more patients needing them.
“Our waiting room and the studio where we host programs are usually bustling. They’re places where current and alumni patients [patients who have completed their treatment] build community and foster connections. Now, they’re stark, quiet, and isolated,” said Fern Nibauer-Cohen, director of Patient Engagement in Radiation Oncology at Penn Medicine.
To meet patients’ and caregivers’ changing needs and provide opportunities for engagement, the Patient Engagement team “jumped right into action” by leveraging technology to ensure the department’s Alumni Patient Engagement and Quality of Life programs continued with minimal interruption. The team rapidly stood up a variety of virtual programs, such as a 1,000 origami crane project led by Penn student Sophia Kim, and a dance and movement therapy class hosted by volunteer Lynn Falk. “And every week, our amazing team comes up with new ideas to keep things fresh and engaging,” Nibauer-Cohen said.
Here is just a sample of the programs the Patient Engagement team has launched to connect current and alumni patients to their care teams and each other:
A Waiting Room Filled with Friendly Faces
Five years ago and just a few days apart, Rich and Heather Badt were diagnosed with esophageal cancer and triple-negative breast cancer, respectively. The Bala Cynwyd couple have finished their treatments, but if you visit the Roberts Proton Therapy Center, you’ll spot them acting as ambassadors in order to ease the anxieties of other patients. The twist: They’re in the form of cardboard cutouts.
Taking inspiration from sports stadiums that have filled their crowds with cutouts, the Patient Engagement team placed eight cutouts featuring former patients’ selfies throughout the waiting room. Not only do they promote social distancing by marking chairs that shouldn’t be occupied, but they also advertise initiatives like the Patient Pairs program, which connects alumni patients like the Badts with current patients.
The cutouts have been a hit, and several other institutions have expressed an interest in adapting the approach for their own waiting areas. And this innovative idea is only in its first phase. Over the coming weeks, the team plans to place additional cutouts in other health system sites and to add QR codes to them, bringing them to life and allowing alumni to immediately share their experiences.
“This is an opportunity to make someone feel like there’s someone else that has been there and is literally with them, even though it’s a cutout,” Heather told CBS3. When navigating the unknowns that accompany a cancer diagnosis, it’s crucial to have support. “The vision is that they can reach out and connect with someone they relate to.”
A Weekly Opportunity to Connect
The Patient Engagement team also hosts weekly virtual gatherings for current and alumni patients and their caregivers. Nibauer-Cohen notes that the gatherings have taken on a sort of engaging talk show format. During each session, two guest speakers — most often staff members like radiation oncologists, nurses, radiation therapists, administrators or dieticians — share information on topics like the latest COVID-19 protocols, vaccination updates, and the importance of getting cancer screenings during the pandemic. Other timely topics such as diversity, equity, and inclusion efforts have also been discussed.
“People can tune in, see friendly faces, talk about their treatment, ask questions, and learn,” Nibauer-Cohen said. The team has also been producing videos featuring faculty and staff to keep them connected with patients, and these gatherings maintain and strengthen patients’ and caregivers’ sense that Penn Medicine is here for them, even in this isolating time. But it also allows patients and caregivers to connect with each other.
“This ‘talk show’ provides a great opportunity to forge these amazing bonds that otherwise wouldn’t exist. In some ways, it’s even better than connecting in person because patients who live in other states are joining these calls,” Nibauer-Cohen said. “Patients really enjoy being connected to each other, and that’s a very important aspect of survivorship. We are planning to continue offering all of our programs on a virtual platform even when we are able to get together in person again. I look forward to a time when we can do this in a hybrid format so that we can continue engaging out of town patients.”
The Yoga Program with a Cult Following
One of the most popular programs that is promoted by the cutouts and during the virtual gatherings is yoga. Instructor Tali Ben-Josef has been leading sessions for patients and caregivers for nearly eight years, and the shift to virtual classes during the pandemic has not deterred her enthusiastic participants.
The classes are centered specifically on the needs of patients undergoing cancer treatment and help participants find gentle ways to boost their wellness, maintain their mobility, and manage their stress. Ben-Josef’s sessions are accessible for patients and caregivers of all skill levels. Some can be done from a seated position; others can be practiced in the kitchen while waiting for your morning coffee; and others are comprised of dynamic poses that can alleviate fatigue.
“It is extremely gratifying to be able to help them on their long journey,” she said. “Seeing patients coming into class tired, upset, and stressed, but leaving smiling and relaxed is the best. Having so many stay with me for years after they finish active treatment is evidence of the benefits that our program brings to them.”
A patient’s note to Ben-Josef sums up the overwhelmingly positive response best: “Although it was an extremely emotional and trying time, there were also many things that touched me in a profound way. You are one of those things,” they wrote. “Your spirit and friendship renewed me each and every week, and I left your yoga class confident that I could handle whatever was in store for me. You are not only a great instructor of yoga, but of life.”
A Musical Break for the Mind, Body, and Soul
Many of the conversations patients with cancer have each day are centered on their diagnosis and treatment — but volunteer Allie McCrea, MT-BC, is there to mix it up. In addition to running a weekly music therapy group for staff to help alleviate burnout, she leads virtual sessions for patients. Through music therapy, McCrea aims to lift patients’ spirits and help them relax and develop sustainable coping skills. Studies suggest that listening to music can elicit responses like a decrease in heart rate and blood pressure, and McCrea has found that even just talking about music can reduce stress.
Whether she is engaging in a meaningful conversation about a patient’s favorite song, rewriting lyrics with a patient to make a song more relevant to their experience, or encouraging a patient to focus on their breathing through music-based relaxation exercises, her goal is to bring a sense of normalcy into an abnormal time. She frequently hears the same response: “Thank you. I needed this.”
“A cancer diagnosis is terrifying, isolating, and tiring, but music has a beautiful way of normalizing a situation and revealing the person behind the diagnosis. Music therapy allows them the space to express themselves,” McCrea said. “As my favorite quote by John Logan reads, ‘Music is medicine of the mind.’ Music therapy plays an important role in connecting the body and the mind, which ultimately helps patients achieve greater wellness.”
Pet Therapy Offers a Much-Needed “Paws”
For over a decade, Christina Bach, MBE, MSW, LCSW, an oncology social worker and the psychosocial oncology content editor for OncoLink, has worked with registered therapy dogs. Research suggests that even just petting an animal can lower your blood pressure, release oxytocin, and relieve stress. Recognizing that her four-legged friends brought comfort and joy to all who encountered their kisses and tail-wagging, Bach partnered with Nibauer-Cohen to establish a Radiation Oncology pet therapy program with her beagles, Finn, Linus, and Huckleberry (Huck).
“We love spending time with patients and their care partners while they’re waiting for treatment. It provides them with a pause from the stress and with some tactile love from an animal who loves them immediately,” Bach said. “Interestingly, what I didn’t expect was how the dogs became a vehicle for folks telling me stories about the animals in their lives.”
Though Finn passed away in 2017, Linus and Huck continued offering a welcome distraction from cancer challenges until the week before the COVID-19 lockdown. Pivoting to a virtual platform has meant that patients and caregivers haven’t been able to enjoy soothing snuggles from Linus or Huck, but the pups still make occasional online appearances. “We’re so excited to transition back to in-person visits,” Bach said. “The Patient Engagement team and I are working hard to bring the dogs back safely and provide this experience to patien