Redefining the Bell Makes the Ritual Inclusive for All Patients With Cancer

What the Bell Means to Patients

The patient-led practice is thought to have begun in 1996 at the MD Anderson Cancer Center (https://www.mdanderson.org/cancerwise/why-do-cancer-patients-ring-a-bell-after-treatment.h00-159306990.html). Patients in one study (https://www.ualberta.ca/folio/2020/06/bell-ringing-ritual-to-mark-end-of-cancer-treatment-builds-community-gives-patients-a-sense-of-control-u-of-a-study.html) said that ringing the bell creates a sense of community, helps them mark an important milestone, and gives them a sense of self-determination as they complete their cancer treatment or a phase within their treatment, such as surgery. However, other patients reported that ringing the bell cause negative or unpleasant emotions (https://news.usc.edu/161762/victory-bell-cancer-treatment-usc-research/), and patients with metastatic cancer or who did not experience positive treatment outcomes reported feelings of anger, resentment, or depression (https://www.astro.org/News-and-Publications/News-and-Media-Center/News-Releases/2020/Is-it-time-to-stop-ringing-the-cancer-bell#:~:text=The%20practice%20has%20received%20criticism,to%20ever%20ring%20a%20bell.) when they heard other patients ring the bell.

Because of this, institutions across the country are redefining what ringing the bell means to make the ritual more inclusive and positive for all patients with cancer.

Make It Mark a Milestone

“For patients who have metastatic cancer, who are going to be on maintenance therapy for the rest of their lives, or who have widespread disease, that moment signifying the conclusion of chemotherapy may not be in the cards for them,” ONS member Lindsey Zinck, RN, BSN, OCN®, NEA-BC, associate chief administrative officer for the Cancer Service Line at Penn Medicine in Philadelphia, PA, said. “Bell-ringing ceremonies can bring a lot of noise and joy to the unit, but when you’re doing them amidst a setting where other patients are sitting by, hearing the cheers and applause, and thinking, ‘I’m never going to be able to do that,’ it’s hard on those patients and their families.”

Zinck explained that initially, her institution tried to phase out the bell or ring it only upon request. But nurses received negative feedback from patients who had completed cancer treatment and wanted their opportunity to ring the bell.

The team’s solution: They redefined what ringing the bell meant so it included all of the milestones that patients have along a cancer journey and updated the infusion area signage with the new definition. Whether it’s a positive scan, the competition of treatment, or just having a good day, all patients are encouraged to ring the bell.

“It’s an approach that has been well received by patients. They hear the bell ringing, but because there’s signage in the room explaining what the ringing could mean, even if they initially thought about it in the historical context, they look at the sign and say, ‘Oh, it might be ringing for another reason, and maybe I could ring it today,’” Zinck said.

The new definition has been in place at the Hospital of the University of Pennsylvania infusion suites for the past two years, and now, Zinck said that the idea is making its way to other Penn Medicine locations. Currently, Zinck’s team is creating an inspirational mural outside the infusion suite at their Cherry Hill facility, where the bell will be mounted outside so ceremonies can be more open yet not in front of other patients.

“We have some units where we have bells mounted, and we have other units where we have a little handheld bell. And there was a time where nurses would take the handheld bell into the room, shut the door, and ring it really softly to make sure other patients didn’t hear,” Zinck said. “It just didn’t feel as celebratory for that patient, but we were trying to be sensitive of others. Now, with the new definition of what ringing the bell means, it’s taken away some of the guilt and ethical dilemma that nurses struggle with. Now it’s like, ‘Hey, it’s here. Anyone who wants to give it a ring, any time, any day, for any milestone—whatever is important to you—give it a ring.’”

Let Patients Personalize the Pomp

Meanwhile at Duke Cancer Institute in Durham, NC, ONS member Monica Cfarku, RN, MSN, BMTCN®, CCM, NE-BC, associate vice president and chief of oncology nursing services, has also worked with her team to create a more positive bell-ringing experience for all patients. After the institution’s patient advisory council asked patients how they felt about the bell-ringing ceremonies, they found that it was a 50-50 split—some patients liked the ritual, and others did not.

“Our job as nurses and nurse leaders is that we have to think about everybody, and not just the one,” Cfarku said. “So, how can we make this an inclusive experience for everybody and not single anyone out?”

That’s how Cfarku and the patient advisory council developed the idea to place a bell outside of Duke Cancer Institute’s main campus and Raleigh locations. They commissioned local artists to design each bell, and the results are beautiful spaces for bell-ringing ceremonies that are meaningful to patients who wish to ring it while considerate of other patients who do not.

At the main center, the bell—lovingly named Sounds of Hope—is outside in a garden next to their Tree of Hope. It was installed in April 2022 on Duke Cancer Institute’s 50th anniversary.

“This way, patients can ring the bell when they go outside, and it signifies their last time walking out of infusion,” Cfarku said. “They can choose to ring the bell or not ring the bell. It’s up to them.”

Both Zinck and Cfarku offered their advice to oncology nurses and institutions who also wish to redefine what ringing the bell means: Engage with your patients—and your patient advisory council if you have one—and be prepared to think outside of the box. Continue to explore more ways to be inclusive and think of innovative strategies to accommodate what patients with cancer are going through.

“To be able to offer all patients an opportunity for brightness—it’s worth it,” Cfarku said.