For Why The Bell Tolls - Celebrations In Chemo Suites Are Insensitive And Awful

A new article in Medscape discusses a very touchy issue - a bell ringing ceremony in chemotherapy suites when someone completes treatment. This widespread practice has been controversial for some time and I don't understand why. It's a no-brainer. It needs to stop.

Yes, many people will complete their treatment and be (apparently) cancer-free. This is cause to celebrate. But do it quietly. Because those suites are also filled with people who are going to die and know it. Some are receiving chemo to prolong their lives and will never "graduate." Imagine what it must feel like to hear bells ringing if you are down to the final (and usually the most toxic) chemo cocktail, sick as a dog and coming to grips with your impending death, only to have to hear a loud celebration that you will never have. In my opinion, this practice is insensitive, at the very least, but also cruel.

As with patients, there is a split within the medical community about the bell ringing.

"You can hear it throughout the first four floors of our main clinical building, and it's such a happy surprise...  Everyone who hears the bell stops what they're doing, smiles, and applauds."

Beth Lenegan, PhD, director of pastoral care at the Roswell Park Comprehensive Cancer Center in Buffalo

Everyone? No way. If I'm a terminal patient his or her family member and hear those bells smiling is the very last thing I'm going to do. Nor will Katherine O'Brien, who is a stage-four breast cancer patient and also a Patient Advocate for Metastatic Breast Cancer Network. O'Brien wrote in a recent essay published on the Linked In site:

Discuss what happens when patients finish their treatments--or don't, as the case may be. If I ran a cancer clinic, there would be no bell in the infusion area. I don't care if "Everyone is invited to ring it." How would YOU like to be there week after week in perpetuity attached to an IV pole as as others celebrate their final appointments?

Katherine O'Brien, September 4, 2018

And the bell can backfire. Nick Mulcahy, the author of the Medscape article refers to a 2011 article in the Journal of Palliative Medicine entitled "To Ring or Wring the Bell?" Author Vivek Subbiah, M.D. describes a horrific case where a young woman named "Jenny" had gone endured excruciating difficult chemo and an amputation of her leg at the knee to fight to off an especially difficult type of bone cancer. By the end of the treatment, there was no evidence of cancer. For scheduling reasons, she postponed the bell ringing ceremony. Just before the ceremony, Subbiah logged into his computer and saw the results of one more scan:

Every time I login and see the scans for every patient of mine, my heart skips a beat. I type in a hurry. The screen opens up and my heart sinks. Oh no. She has developed a metastatic tumor in her lungs."

Vivek Subbiah, M.D

Eight months later, despite another grueling round of chemotherapy and radiation, Jenny died at age 18. 

I believe that Anne Katz, Ph.D. who is a nurse and author of the book "After You Ring the Bell...10 Challenges for the Cancer Survivor" has it right:

"While the end of active treatment, be it chemotherapy or radiation therapy, is certainly a milestone, it is NOT the end of treatment or side effects for many." 

Anne Katz, Ph.D

It is not unfair to draw a parallel between bell ringing and the fallout from the "opioid crisis," which has made it very difficult for pain patients to get the medicines they need. In both cases, the victims are the powerless, poor and ill - groups that are all too easy to ignore. The chemo suite patients who are going to die are powerless against their cancer while stronger and more fortunate people can ring a bell. But it is at the expense of the less fortunate, who can't even get up and leave. Bell ringing is cruel to these patients, who have already suffered mightily.