All cancer patients know that a cancer diagnosis can be a scary and uncomfortable time. Treatment with radiation and chemotherapy often comes with side effects of nausea, exhaustion, sometimes hair loss, and more. So when a patient completes their treatment and is given the opportunity to “ring the bell” to mark this milestone and close a difficult chapter, it can be an exciting time to celebrate.
But not everyone feels like celebrating when they hear the bell ring. For patients who have metastatic cancer and need to be on maintenance therapy for life, they may feel excluded. That’s why, in the last few years, the Abramson Cancer Center (ACC) at Penn Medicine has been working to make bell-ringing more inclusive so patients can recognize their moments to cheer, large and small.
The Importance of Ringing the Bell for Cancer Patients
Upon her diagnosis of colorectal cancer that had metastasized to her liver in the spring of 2021, Cynthia Olds quickly began radiation and chemotherapy at the ACC at the Hospital of the University of Pennsylvania (HUP). Olds said that although her stage 4 cancer diagnosis was scary, she had hope.
Since starting treatment, she has been a witness and participant of the bell ringing ceremony many times, and thinks it is an important part of patients’ treatment and recovery.
Olds most recently rang the bell herself after her fourth round of chemotherapy, to signify the end of that chemo round even though she is still continuing on maintenance therapy after that.
“I think it is important because of what patients endure and have to go through with treatment,” she said. “It marks the end of a miserable time and serves as an emotional release to ring the bell, as well as a relief.”
A Ritual Born from Tradition: The History of Ringing the Bell
Almost 30 years ago, MD Anderson began implementing a bell ringing ceremony at the end of a patient’s radiation therapy treatment, adopted from the Navy’s tradition of ringing the bell after completing a task that went well. Since every patient has an end point to radiation, this was an inclusive practice for all. With its success, other health systems, including Penn Medicine, decided to join in on this celebratory ritual. Many places expanded bell-ringing to include patients who completed chemotherapy treatments and were deemed cancer-free.
The ceremony has always been a joyous occasion. Patients ring a brass bell hung from the wall and recite an inspirational poem about completing treatment. The celebration, usually a public one, includes the patient’s family and friends as well as staff who cared for the patient through their journey.
Rethinking the Bell After Seeing a Need for Change
In recent years, staff in the ACC at HUP started to recognize that some patients on the cancer units overhearing the bell-ringing ritual were left out of it, or even saddened by it. They felt conflicted.
“I did feel bad for the patients who were not able to ring the bell. The bell is located near rooms with other patients getting treated, and sometimes we would close the door nearest the bell due to the loud noise,” said Carlin Cialino, BSN, RN, OCN, a chemotherapy nurse at HUP.
Staff in the unit started to second guess if they should even have these ceremonies.
“It started to feel controversial when we took a look at all the patients getting maintenance therapy that would not have the opportunity to ring the bell, or other patients who had previously rung the bell, then had their cancer return and now had to hear the bell ringing, which could potentially bring back those sad memories,” said Lindsey Zinck, RN, MSN, OCN, chief nursing officer of the cancer service line at the ACC.
After Zinck and the team vocalized their concerns among themselves, they considered a few options. First, they discussed phasing out the bell altogether, but decided that wasn’t fair to individuals who really looked forward to that symbolic celebration. Second, they experimented with small hand-held bells for patients in private rooms, but only one facility at Penn Medicine had private rooms for chemotherapy, so most units could not accommodate this. Next, they tried limiting bell-ringing ceremonies only to those patients who requested it. But staff then received negative feedback from patients who completed their treatment and wanted to celebrate.
After that, they knew they needed a new plan that would involve every patient getting a chance to celebrate.
“It was a collective effort to rethink how we redefined what the criteria would be for ringing the bell. It was just too heartbreaking to continue to watch stage four cancer patients clapping for others finishing their treatment and knowing they may never have the same opportunity,” said Clarice Maggio, BSN, RN, OCN, a member of the team who recently retired after more than 30 years as a chemotherapy nurse at HUP.
Ringing for Cancer Milestones, Ringing for Hope
In 2020, during the height of COVID-19, Zinck, Maggio, and other colleagues mapped out a new way to redefine what constitutes a bell ringing. They decided that patients could ring the bell at the end or beginning of their treatment cycle, they could ring it for any type of good news like an improved CT scan, or for when they weren’t feel good and needed to rally. Basically, the staff wanted patients to give it a ring whenever it felt necessary or the patient wanted to spark hope or joy. They also chose to ring the bell when nurses on the floor hit a personal milestone like a new certification or being recognized for helping a patient. No longer was the bell ringing only for certain people, it was for everyone.
Ring the Bell Reminders for All
While the team has worked hard to share the change, they sometimes still find themselves reminding patients that the bell is for everyone.
Maggio even created a new poem for patients to read instead of the traditional one used that only applied to those finishing treatment. Her poem was about hope, something every patient had in common.
Signs in every patient area also show details about what warrants ringing the bell. If patients ask about the bell and seem curious, the staff will encourage them to ring it.
“Anyone finishing the chemotherapy cycles is asked if they want to ring the bell. There are patients who hear about the bell and ask their providers if they can ring it after either oral therapy or inpatient chemotherapy regimens. These are sometimes patients we have never met because they receive therapy at home, but we are happy to provide the experience for them,” said Cialino.
After ringing the bell for the completion of her fourth round of chemotherapy for stage 4 cancer, Olds pointed out another reason why she and other patients value taking part in the ritual at many stages: It helps patients who may want to take a moment to express their gratitude and thank staff who helped them and their support system.
Fine-Tuning the Bell Ringing
Today, the team is still fine-tuning who rings the bell and sharing the new, inclusive criteria at other ACC locations throughout the region, like at Penn Medicine Cherry Hill.
Melanie McAnulty Zisa, RN, BSN, OCN, infusion nurse supervisor at Cherry Hill, has spearheaded the effort with Zinck to reimagine their unit for patients. They are planning to place an inspirational mural in front of the unit where the bell will be located. Therefore, the bell can still be rung in an open area but not right in front of other patients. Cherry Hill will be the first infusion suite across all of the health system to implement a bell ceremony with a wall mural.
“We plan to re-locate the bell and with this re-location it will allow for privacy, family and friends to be present, sensitivity to other patients if they are not in favor of bell ringing and also a happier ‘looking’ space,” said Zisa. “We are currently working with an artist who is designing a wall mural based off feedback of ideas from our staff and images that represent hope, life, and happiness.”
Zinck and her team continue to look for ways that the bell ringing ceremony can be reshaped and accommodate all their patients, like communicating with patients at the start of their treatment journey that the bell is inclusive for all and giving various examples of when they can ring the bell. They want patients to understand the bell does not represent the ending of something, but rather the hope for success against cancer.
“For all of us [patients] we have to maintain hope,” said Olds.