RINGING A BELL WHEN TREATMENT ENDS?

Many hospitals have a "victory bell" that patients can ring in triumph at the end of cancer treatment, but new data suggest that it can make patients feel worse, not better.

Results from the first prospective controlled clinical trial of the psychological impact of ringing a victory bell suggest that it triggers intense feelings of treatment-related distress that can persist and worsen for months.

"Ringing a bell on the final day of cancer treatment may be an example of a bad practice with good intentions," say the authors, led by Patrick A. Williams, MD, of the Norris Comprehensive Cancer Center, University of Southern California, Los Angeles.

The study was published in October 2019 in the International Journal of Radiation Oncology Biology Physics. 

"We hypothesize that ringing the bell creates emotional arousal that magnifies the distress from cancer treatment and subsequently worsens evaluation of the treatment," the study authors write.

This new hypothesis contrasts with their initial ideas — that the practice would improve patients' perceptions of the overall distress from cancer treatment. Instead, the findings from this trial suggest it may act as a "flashbulb event" that stimulates neural pathways connecting vivid memories and unpleasant emotions experienced during therapy.

"Rather than locking in the good feelings that come with completing treatment...ringing the bell appears to lock in the stressful feelings associated with being treated for cancer," Williams commented in a statement released by the American Society for Radiation Oncology.

When asked by Medscape Medical News if the bell ceremony should be modified or eliminated, Williams said he was "not quite ready to call for an all-out bell-ringing ban."

However, he would discourage clinics "from making much ado of the ringing ceremony" or from giving patients a "gentle nudge" to ring the bell, "which I've heard a lot of clinics do.

"The goal should be to keep emotions unaroused," Williams told Medscape Medical News. "Emotional arousal during the worst possible time, such as the final day of a painful treatment, causes worsening of the memories of treatment."

The study authors suggest that ringing a bell might work better at the beginning of treatment, prior to the onset of treatment-related side effects. A quiet ceremony or small gift might be "more desirable" after treatment ends, they say.

"In any event, careful evaluation of clinical practices is warranted to ensure that we are not inadvertently worsening patients' perception of treatment-related distress," they write.

First Trial to Evaluate the Practice

For the study, 163 patients (77 bell ringers and 86 non-bell-ringing control persons) completed a questionnaire on the last day of radiotherapy. They rated total distress, worst distress, and the degree of unpleasantness of treatment using an 11-point numeric rating scale as well as a verbal rating scale. A mean distress score based on the three ratings was calculated for each patientBaseline anxiety levels were obtained using the Generalized Anxiety Disorder–7 scale. At routine follow-up visits, patients completed a shorter survey that asked the same questions.

The findings show that the bell-ringing cohort had significantly higher overall distress scores than control persons (P = .045), particularly when they were aged ≤60 years (P = .025), had a diagnosis of cancer other than cancer of the prostate and the genitourinary (GU) system (P = .002), and when cancer was diagnosed because of symptoms rather than incidentally (P = .02).

Notably, several variables were common to patients with higher distress scores whether or not they rang the bell.

Higher distress scores were seen in patients aged ≤60 years compared with those aged >60 years (P < .001); in female vs male patients (P = .004); in those who received a non-prostate and non-GU diagnosis vs a prostate or GU diagnosis (P < .001); in patients whose diagnosis was related to symptoms rather than found incidentally (P = .003); in patients who received a radiotherapy dose ≤60 Gy vs >60 Gy (P = .008), and in patients who had previously undergone surgery (P = .02).

At a mean follow-up of 103 days for the bell-ringing cohort and 130 days for control persons, both groups reported higher levels of distress. This finding was expected, the study authors point out, "because patients tend to overestimate pain intensity upon evaluation." The distress scores increased more precipitously in patients who participated in the bell ceremony (6.4 vs 5.1; P = .009) than in those who did not.

Sentiments Against Bell Ringing

As previously reported by Medscape Medical News, many advocates for patients with metastatic disease roundly condemn the victory bell ceremony. For patients with metastatic disease, it is likely that treatment will never end, and hearing other patients ring the bell because they have finished can arouse feelings of anger, resentment, or depression, they say.

That Medscape article seemed to hit a chord, with 150 readers posting comments. Most gave the victory bell ceremony the "thumbs down."

"For those fortunate enough to be completing a successful finale of their cancer treatment, they will have ample opportunity to celebrate, but ringing a bell in the company of those who are struggling, in my opinion, is just cruel," commented one reader.

Another wrote: "At the center where my mother was treated, each patient was given a white rose upon completion of their therapy. It was a small, quiet acknowledgment of the battle they had endured...[but it was] very subdued out of respect for others continuing the struggle."

However, one pro-bell reader had this to say: "I hear the bell daily in my work and it brings tears to my eyes and fills me with hope and joy every time. I couldn't imagine not having it as a part of cancer care."

Williams and colleagues comment in their article that ringing the bell hints at cure, although "oncologists almost never proclaim to patients they are cured." In addition, guarded statements made on the last day of treatment, such as telling a patient there is no evidence of disease, can sound like a hedged bet and can cause patients to experience ongoing fears of recurrence.

One cancer patient homed in on this risk for recurrence. In a column in the Annals of Internal Medicine, Mary Beth Schaeffer, who was diagnosed with stage IV de novo breast cancer, says she has watched the victory bell ceremony "time after time" while undergoing infusion therapy. "The patient rings the bell. Nurses and doctors join in. Toasts abound! But one third of them will be back with a recurrence. And they will join me," she writes.

In a column in JAMA Oncology, Kevin J. Gale, a medical student at the University of Minnesota Medical School in Minneapolis, recalls his own mother's anguish upon hearing another patient ring the bell. Diagnosed with stage IV colon cancer, the typically stoic woman was reduced to tears. "Why her and not me?" she asked.

This spurred Gale to conduct a survey. He contacted 62 National Cancer Institute–designated cancer centers and learned that 51 had a victory bell.

"Why do oncology clinics install the victory bell in the infusion room or lobby, usually within earshot of terminal patients?" he writes. "Is it important to continue this celebratory tradition, even if it brings sadness and tears? Why would a cancer center want to negatively affect patients with terminal diseases?"

Williams and the study's coauthors have disclosed no relevant financial relationships.

Int J Radiat Oncol Biol Phys. 2019;105:247-253. Abstract