Cancer Bell Ringing Angers Some Who Can Only Watch

By Nick Mulcahy
WebMD Health News

Oct. 15, 2018 -- Bell-ringing ceremonies to mark the end of a cancer treatment are now widespread at cancer clinics around the United States. It is difficult to find a center without a bell or bells.

Each ceremony stars a patient who has completed a full course of chemotherapy or radiation. The honoree will ring a bell and often read a brief wall-mounted poem alongside the bell. The event is intended to provide a sense of closure to an often difficult experience.

For patients, families, and caregivers who take part, the bell-ringings are very emotional and cathartic.

"We'll go from tears to laughter in just about every ceremony," said Bonita Ball, a nurse manager who worked to get a bell installed 4 years ago at an inpatient chemotherapy unit at Pennsylvania Hospital in Philadelphia.

At Roswell Park Comprehensive Cancer Center in Buffalo, NY, there is a large "victory bell" in the main lobby. "You can hear it throughout the first four floors of our main clinical building, and it's such a happy surprise," said Beth Lenegan, PhD, director of pastoral care at the center. "Everyone who hears the bell stops what they're doing, smiles, and applauds."

Maybe not everyone.

For patients whose cancer has spread, who cannot "beat" cancer, the sound of the bell can trigger anger, resentment, resignation, or depression, according to various online accounts.

Treatment -- particularly chemotherapy -- will be part of the rest of many of these patients' lives. There is no end to it.

In a recent essay, Katherine O'Brien, a patient with stage IV breast cancer from Chicago, has advice for cancer centers: Get rid of the bells in suites that give chemo infusions, or IVs.

"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 others celebrate their final appointments?" she writes.

"I am not saying it's wrong to celebrate the end of treatment," O'Brien says. "I am saying it's insensitive to have a dance party in the infusion suite in front of other patients who will be reporting for chemo for the rest of their lives. Why not quietly hand out certificates of completion?"

O'Brien's words are restrained, compared with those of Judit Saunders, a patient with metastatic breast cancer who writes the blog, The Life I Didn't Expect.

"I f*ck*n hate that!" she writes about the bell and what it seems to suggest -- that once treatment ends, "life goes back to what it was before."

Saunders is jarred by the bell and its ringers: "Personally I find it a bit ignorant and obnoxious to see people express their excitement when others around them are simply struggling to stay alive."

"Should I ring the bell?" has been a bulletin board topic for patients on breastcancer.org, a popular website for consumers and laypeople. On the site, a woman with metastatic cancer from Ottawa, Ontario, reported that she was told she "has to ring" her hospital's chemo bell and asks for advice.

She received 59 responses from other patients. They are about evenly split between disparaging the ritual and embracing the moment of completing a treatment. As one woman who likes bell-ringing says, "We need to celebrate the little victories."

Another woman from New York relates a possible cultural problem with the ceremony. "There is a Jewish superstition about not wanting to attract the evil eye. It's why we don't have baby showers before the baby [is born]. I can kind of understand why you don't want to ring the bell."

Other women express similar folk wisdom about bell-ringing that could be summarized as: Don't tempt fate.

What Doctors Think and Propose

Doctors have noticed that bell-ringing ceremonies can create awkwardness and heavy hearts.

John Marshall, MD, of the Georgetown Comprehensive Cancer Center in Washington, D.C., is in charge of the center's chemotherapy IV unit for colorectal cancers, which includes a bell. "Should we have this bell?" he asked in a Medscape video earlier this year after relating the story of a patient who felt isolated by its ringing.

He wonders if patients with metastatic cancer, as non-bell ringers at his center, need some "anniversary-type event or something that allows them to acknowledge the fight that they are continuing."

Now, months later, Marshall says: "It is a big issue and, no, we have not solved the problem, although we have increased the sensitivity to the nursing staff and others."

Ball, who's a registered nurse, stressed that her staff at Pennsylvania Hospital close the room doors of people with a poor prognosis.

Their team has learned from experience. At first, their ceremonies always included cake and were very party-like.

"We realized this isn't a celebration for everyone, so we are now purposeful and sensitive when we do this," Ball says.

But she also acknowledged that their bell is in a "central location" next to the nurse's station in the middle of an 18-bed chemo IV unit.

Anne Katz, PhD, a registered nurse from Winnipeg, Manitoba, and author of After You Ring the Bell ... 10 Challenges for the Cancer Survivor, calls bell-ringing a "sentinel moment" but says it may "send a mixed message."

"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," she says in an email.

The next steps in treatment, such as long-term endocrine therapy for breast cancer or prostate cancer, are "often unexpected and survivors may be frustrated," she says. Katz added that the bell-ringing ceremony, with its suggestion of finality, may lead family and friends to have "unrealistic expectations of what the survivor can or should be doing."

The Fragility of Hope

Roswell Park's Lenegan explains that the bell is pretty much about hope -- for patients and staff. "When that bell is rung, it really is a sign of hope for all who hear it -- the newly diagnosed, those on the treatment path, those who may want to give up, and those of us who work at the cancer center, too," she says.

"It's a real moment of celebration," Lenegan says.

The moment may or may not last.

In an essay, Vivek Subbiah, MD, a medical oncologist at MD Anderson Cancer Center in Houston, tells the story of "Jenny," an 18-year-old with a poor-prognosis bone cancer who endures a below-the-knee leg amputation and then masters walking and running using a prosthesis along with a "rigorous and heroic chemotherapy."

Finally, there is "light at the end of the tunnel" -- Jenny's scans come back clean at her clinic visit, and there is no evidence of cancer.

But Jenny came alone to this good-news visit at the MD Anderson Children's Cancer Hospital, and as a result, she wants to postpone ringing the bell for her next visit, so that her friends and family can be present.

Jenny's next visit is not until 8 weeks later, when she has a chest scan scheduled hours before the bell-ringing ceremony.

At the clinic, Jenny and her family join the entire treatment team around the bell. She will have her visit with her oncologist, Subbiah, after the ceremony.

Before joining the family, Subbiah checks if Jenny's scans have finally been added to the MD Anderson computer system.

"The screen opens up and my heart sinks. Oh no. She has developed a metastatic tumor in her lungs. She was completely without symptoms," Subbiah explains.

The young doctor walks out to the bell, where Jenny is just beginning the ritual of receiving her certificate and ringing the bell three times. Everyone cheers. Pictures are taken. Jenny says it is the happiest day of her life.

Finally, Subbiah asks the family to come into his office. The bad news is shared. Eight months later, Jenny dies.

A month after Jenny's passing, the family visits Subbiah, and they recall their and Jenny's gratitude for having had the bell-ringing experience. They give him a favorite picture from the ceremony. He trusts that Jenny's three sisters will keep the same photo and display it on a wall, table, or mantel and that, when they look at it, "they will feel the joy of that moment ringing the bell."



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