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Bell Ringing Not So Joyous for Cancer Patients?

— Greater treatment-related distress for those who rang bell at end of treatment

Ƶ MedicalToday

A widely practiced tradition to mark the end of cancer therapy had unexpected, counterintuitive effects on patients' emotional well-being, a comparative prospective study showed.

Patients who rang a celebratory bell after completing radiation therapy reported a significantly higher level of treatment-related distress at the end of therapy and 3 to 4 months later as compared with patients who did not ring the bell at the end of treatment. The difference in perceived stress increased over time in the bell-ringing group versus the control group.

The findings contradicted expectations based on the "," a form of cognitive bias wherein memories of unpleasant experiences are influenced more by the most emotionally intense moments (peak) and emotions at the end of the experience, as reported in the International Journal of Radiation Oncology • Biology • Physics (Red Journal).

"We expected the bell to improve the memory of treatment distress," Patrick A. Williams, MD, of Tennessee Oncology in Chattanooga, said in a statement. "Ringing the bell actually made the memory of treatment worse, and those memories grew even more pronounced as time passed."

"We think this is because ringing the bell creates a 'flashbulb event' in a patient's life; that is, a vivid snapshot of their memories from that time," he said, deeply embedding memories of the event. "Rather than locking in the good feelings that come with completing treatment, however, ringing the bell appears to lock in the stressful feelings associated with being treated for cancer."

In a devoted to the study, Red Journal editor-in-chief Anthony Zietman, MD, of Massachusetts General Hospital Cancer Center in Boston, said the findings "really took us by surprise."

"In this era of patient-centered care, we all want to do anything and everything we can to ease patients through a difficult passage in their cancer treatment -- the radiation therapy," he said. "And what could be more natural and uplifting -- we thought -- than to celebrate the end of treatment with some fanfare. And nothing symbolizes victory more potently than the ringing of bells."

"Ringing the bell brings the treatment to an end on an emotional high, and what a fabulous idea -- you would think," Zietman added. "Well, maybe we should think again."

Background and Results

Introduced almost 25 years ago, the "bell ceremony" is observed worldwide to celebrate the end of cancer treatment, including at NCI-designated cancer centers in the U.S. The practice has gained recognition in the medical literature, consumer media, and social media, Williams and colleagues discovered as they gathered information for their study.

Most of the research, news, and commentary supported the "joy and victory that patients derive from ringing the bell, though to be a symbol of closure and hope," the authors noted. However, the practice was not without and , particularly among . Even so, the authors found no prior research examining the psychological effects of the bell ceremony.

Peak and end moments serve as a mental shortcut that summarizes an experience in one coherent thought. Williams and colleagues sought to determine whether the principles of peak-end moments apply to the psychological effects associated with bell ringing at the end of cancer treatment.

Investigators recruited a total of 210 participants in two cohorts for the study, which was conducted while Williams was a resident at the University of Southern California Norris Comprehensive Cancer Center in Los Angeles. Participation was limited to patients who required extended radiation therapy (not for symptom relief or palliation) that would cause adverse effects commonly associated with radiation.

Patients chosen for the control arm underwent planned treatment and completed a survey and Verbal Rating Scale at the end of treatment. The survey included an 11-point scale for rating treatment distress. At follow-up, they completed a shorter survey that included the same rating scale.

Following installation of a bell in the radiation therapy clinic, the second cohort underwent treatment and rang the bell on the final day. The patients completed the same assessments at the end of treatment and at follow-up.

The authors reported that 86 patients in the bell group and 77 in the control group completed the initial and follow-up surveys of treatment distress and formed the basis for data analysis. The two groups did not differ significantly with respect to demographic and treatment characteristics. The data showed significantly higher mean distress scores among patients who rang the bell at the end of treatment (5.6 vs 4.7, P=0.045).

The difference in distress score increased at the follow-up assessment (6.4 vs 5.1, P=0.009), although patients in the bell group had slightly shorter mean follow-up (103 vs 130 days, P=0.056).

Speculation about Meaning

Speaking on the podcast, Williams said, "We kind of had to rethink what was the cause of this. When I was reading through the literature on people's memories of pain, I came across something called emotional arousal that I think might explain what's happening."

"The memory of pain can be influenced by emotional factors. The prominence of a memory can be coupled to the emotions felt during the event. [The ringing of the bell] creates a very excited state. The problem is that it's creating a very excited state at precisely the worst time, when they're in the worst amount of pain from radiation. I think emotional arousal helps to seal this negative memory of radiation into their brain better and makes the memory stronger in a negative way."

Williams' explanation for the contradictory results "makes a lot of sense," said clinical psychologist Andrea Bonior, PhD, of Bethesda, Maryland, another podcast participant.

"You're heightening the arousal [with the bell ringing], so that's perhaps sealing in the memory," she said. "I also think there is a fundamental difference between something like going through a colonoscopy versus the emotional heft of going through cancer treatment. Even though you're trying to measure physical discomfort as a unilateral factor that would be similar in dose, I think that the physical discomfort [of cancer treatment] is so kind of intertwined with fear, with all kinds of negative emotions, that it's almost a different kind of pain compared to the pain of a procedure that, when it's over, it's over."

Ringing the bell might also create a state of emotional confusion. The patient might think, "OK, now I'm supposed to feel good, I'm supposed to feel like I've triumphed and won and it's over, but in reality what if I have a lot of mixed feelings," said Bonior. "[What] if I'm still terrified the cancer's going to come back? If I feel sad for all of the people in the hospital who can't ring this bell? If I feel resentful of all the time cancer has taken out of my life for the past months or years?"

"I wonder if there's something about the bell ceremony that feels a little negative because it feels not nuanced enough, perhaps. That it doesn't recognize that [the experience is] not necessarily over and that maybe people are feeling uncomfortable in some ways, because they're like, 'Wait a second. I'm supposed to be smiling. My sister is going to post this on Facebook. I'm supposed to be thrilled and there's something inside of me that makes me just want to be alone and cry.'"

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    Charles Bankhead is senior editor for oncology and also covers urology, dermatology, and ophthalmology. He joined Ƶ in 2007.

Disclosures

The authors reported having no relevant relationships with industry.

Primary Source

International Journal of Radiation Oncology • Biology • Physics

Williams PA, et al "The cancer bell: Too much of a good thing?" Int J Radiat Oncol Biol Physics 2020; DOI: 10.1016/j.ijrobp.2019.06.012.