New victory bells will ring for many personal triumphs in cancer survivorship
Which moments should patients count as victories during their cancer journeys? For decades, cancer victory bells have been used to announce the end of treatment or when a patient becomes cancer-free (remission). In short, victory has meant, “It’s over.”
Although cancer victory bells have helped bring closure and celebration to many, the ringing of the bell has not always been a welcome sound to those still on their journey, those whose cancer has returned, and those with untreatable cancers.
Lately, oncologists and psycho-oncologists have begun changing the perceptions of when it’s appropriate to ring a cancer victory bell, as well as who is encouraged to ring it. To that end, the UAB Psycho-Oncology Program is leading a task force to install new bells throughout the O’Neal Comprehensive Cancer Center at UAB, as part of an effort to create a more inclusive understanding of victorious moments among patients, their families, and staff.
Updating the concept
O’Neal Comprehensive Cancer Center patients have been ringing cancer victory bells located in both Hematology/Oncology infusion clinics and in the Radiation Oncology Clinic for over six years. A patient graciously donated a bell to the Gynecologic Oncology Clinic about two years ago. In most cases, patients ring them to announce the completion of treatment and moving toward a return to regular life.
“The general idea is useful for patients, from a psychological perspective, as a means of coping and making sense of one’s journey, but it needs updating” said Sylvia Huang, Ph.D., who leads the Psycho-Oncology Program. “We already have begun encouraging the ringing of the bells as a broad opportunity to mark special moments or to send a message of hope to oneself and others.”
Huang already introduces her incoming patients to a broader vision for ringing the bell by having them identify and anticipate smaller victories that are still worth celebrating. Now, she is working with colleagues and patients to formalize an expanded vision of the bell. “We formed a task force to give the cancer victory bell concept a formal update to be shared systemwide,” Huang said. “We also see this as a great opportunity to create data for other medical institutions that are also using victory bells.”
UAB Medicine’s Cancer Patient and Family Advisory Council (PFAC) played a key role in shaping the goals of the Victory Bell Task Force. The PFAC is made up of volunteers who recently received cancer care at UAB Medicine or whose family member received cancer care, and they provide insight to UAB Medicine leaders about how to improve the patient experience. Huang initially engaged with the PFAC to better understand perceptions of the victory bell and hear what members’ individual reactions to it had been.
Pankit Vachhani, M.D., is a hematologist and oncologist who specializes in the care of patients with leukemia. Another leader of the task force, Dr. Vachhani has made clinical observations of how patients use and respond to the cancer victory bells. He identified two important points that will be amended for the new bell concept.
“First, ‘cancer survivor’ is a term that has broadened to mean anyone with a cancer diagnosis, regardless of their phase of treatment, remission, or how long ago they had detectable cancer,” Dr. Vachhani said. “People don’t wait for a certain moment of victory to become survivors, much less lose that status depending on the future.”
Second, Dr. Vachhani said cancer survivors should take a more inclusive view of victory. “Ringing the bell only when completing treatments or being cancer-free could make ringers feel negative looking back, and it could make listeners feel negative in their present circumstances,” he said.
Huang said the families of patients often are there for the ringing of the bell. “We know that family members can feel similar amounts of psychological distress as their loved ones who have a cancer diagnosis,” she said. “The old bell concept fell short in that it didn’t encourage families to help define and celebrate victories, and we want to change that,” she said.
When the bells ring
The Victory Bell Task Force is developing patient and staff materials to explain the new cancer victory bells and expand their usage. The PFAC helped identify new options to celebrate cancer treatment milestones by conducting opinion surveys, monthly discussions, and site visits. Patients and their family members will be encouraged to ring the bells for various personal reasons, including:
- Beginning or ending treatments
- Achieving milestones like laboratory or radiological measures
- Pain-free days
- Successes in supportive services, such as counseling or spiritual health
- Witnessing inspiring moments from other patients
- Celebrating events outside of the clinic, such as attending a family reunion or concert
- Clinical trial enrollment
UAB Medicine staff across the organization will be better prepared to help patients celebrate. “We have always looked forward to hearing the bell ring, because it builds camaraderie with patients and creates a hopeful atmosphere,” Dr. Vachhani said. “At the heart of this redefinition is the desire for being inclusive to all our patients throughout their diverse journeys while also preventing negative impacts that have been documented in literature. All of our staff will be able to participate with scripts and educational materials to engage the patients. The oncology care team can play a key role in validating their sense of victory.”
“We want to coordinate the way we coach patients to use the bells with the way staff respond to the patients,” Dr. Huang added. “It’s a chance to capture and frame the moments in a way that is most psychologically helpful to each patient.”
New and updated bells
Two new victory bells are currently being placed in the O’Neal Comprehensive Cancer Center Hematology Oncology infusion clinics located at The Kirklin Clinic of UAB Hospital and The Kirklin Clinic at Acton Road. The task force hopes to place new bells in other oncology units over the next two years. All existing cancer victory bells will receive new, inclusive scripting on the accompanying placards, to help patients feel confident in their celebrations.
The task force led by Dr. Huang and informed by the lived experiences of the PFAC hopes to contribute to the culture of cancer centers nationally. Its work is based on the shortcomings of cancer victory bells, but it also creates a rare opportunity to measure the impact of positive changes and define how new bells should be used. “We are following the research that does exist, but we will measure patient satisfaction and psychological and clinical outcomes to learn a lot more,” Dr. Vachhani said.
The Victory Bell Task Force also plans to explore other ways of celebrating cancer survivorship victories in the future. “We are part of a comprehensive care center that provides each patient with a treatment plan optimized for their different journeys,” Dr. Huang said. “These bells will provide patients and families a way to celebrate all forms of survivorship for better psychological outcomes.”