Why is ringing a bell on a ward to celebrate the end of someone’s treatment now upsetting so many cancer patients?
It’s a ritual introduced from the US to mark the completion of care, but amid growing disquiet...
WHEN seven-year-old Dottie Rees rang the end-of-treatment bell on Safari Ward at Great Ormond Street Hospital on October 6, 2022, it marked the end of 18 months of gruelling chemotherapy.
Diagnosed with an extremely rare and inoperable brain tumour — bilateral glioma of the thalamus — when she was just four, she’d endured numerous admissions not just to Great Ormond St, where she’d had surgery to relieve the build-up of fluid on her brain, but to a local hospital too to treat infections and for blood transfusions.
For her family — parents, John, 40, and Louise, 37, and sisters, Lily, 18 and Bella, 12 — hearing the bells being rung on different wards, and celebrating with other families whose children had reached milestones in their treatment, became a mainstay of their time in hospital with Dottie.
Amid the daily grind of painful treatment, the sound of the bells represented hope. ‘They marked a huge achievement for both children and parents’, says John, a freight train driver.
‘We were all striving to reach the point where we were able to ring it. To us, the end-of-treatment bell never meant someone is cured or cancer free. It was
‘We were all striving to reach the point where we could ring it’
simply a way of celebrating one gruelling cycle of chemotherapy or treatment finally coming to an end. It was a goal that we all wanted to achieve.’
The bell-ringing ritual is a familiar sound in many cancer wards across the worldincluding hospitals in Ireland. But while for some it marks an important milestone, for others it’s an unwelcome reminder that they will never be able to celebrate the ‘end of treatment’, as their condition is incurable and the end of treatment means doctors have run out of options.
Meanwhile, even those who take part can be left with negative feelings about the experience. A study of 200 cancer patients, published in the International Journal of Radiation Oncology in 2020 found that patients who rang the bell reported more distressing and longer-lasting memories of treatment than those who didn’t. Researchers suggested the sound could create a ‘flashbulb’ event, locking in bad memories and creating false hope.
Now there is increasing patientled debate about the value of the end-of-treatment bell ceremony, with some campaigning to scrap the practice entirely. In Britain, this has already led to some hospitals, such as Royal Shrewsbury Hospital, removing the endof-chemo bell from the Lingen Davies Oncology Centre after complaints from patients.
When Kate Rackham, 46, a teacher and mum of two girls (Ruby, 12 and Nancy, ten), posted her thoughts on X (formerly Twitter) in November, she was tethered to a drip having chemotherapy for stage 4 breast cancer — and unable to escape the sound of another patient in the same ward gleefully ringing the end of treatment bell.
She wrote: ‘I’m sitting here alone on the ward while staff go out to whoop, clap and cheer a bell ringer right outside the door. I’ll never finish treatment, unless it’s to die. Am I just being miserable?!?’
She had more than 800 responses — while some patients said they found the sound of the bells cathartic and hopeful, many, like Kate, admitted they struggled with mixed feelings. Doctors also commented: Dr Jo Evans, a consultant medical oncologist, wrote: ‘No. You’re not being miserable. I’m an oncologist and I hate these bells... The worst bit is it’s in earshot of those who will never finish treatment, be cured or get to ring it. Followed by the “tempting fate” feeling I get every time I hear it!’
As Dr Evans told Good Health last week: ‘Bell-ringing is thought to have begun when a patient who was a naval officer donated one to the radiotherapy department at MD Anderson Cancer Centre in Texas in the US.
‘In the Navy, bells were rung to signal the end of a task, usually a complex one.
‘But it’s now morphed to celebrate being cancer-free, which was never the intent. A gift to celebrate surviving adversity and getting through a hideous period is now something entirely different.
‘I treat patients with a high risk and rate of relapse.
‘I wouldn’t begrudge anyone celebrating being “cancer-free”, but the sad truth of it is that we know some patients will relapse’ — either locally or with secondary cancer.
‘I have one patient who rang a bell following completion of their radiotherapy, only for it to return later — they now solely blame this on their cancer coming back — so the bell can have significant mental health repercussions in the years to come.’
Kate, who is a founding member of the charity Fighting to be Heard, which represents the 55,000 patients living with secondary breast cancer, rang the bell herself at the end of her first round of treatment in April 2017. ‘I rang it because I thought that’s what you did,’ she says.
‘But knowing there was a very real chance the cancer could come back, I tinkled it quietly.’
She was first diagnosed with stage 3 oestrogen-receptive invasive ductal carcinoma in 2016 and underwent surgery to remove a 6.5cm tumour from her left breast.
However, subsequent tests showed the cancer had spread to her lymph nodes and ‘I had every treatment thrown at me,’ she says — this meant a mastectomy, removal of lymph nodes, chemotherapy and radiotherapy, ‘which was gruelling, like having the worst hangover and flu simultaneously’.
‘So when that was over, and I had a clear CT scan, I definitely felt like celebrating.’
But when she wrote her post on X, six years later, having lived through cancer
‘Now my cancer is back and I have to listen to others whooping and clapping’
recurrence in her bones and liver, more treatment then further recurrence last year, unsurprisingly, she’d been feeling a bit ‘woe is me’.
‘I’d had one round of paclitaxel that I’d had a severe allergic reaction to, so it was changed to abraxane, but last October I was told it wasn’t working after further progression,’ she says.
‘At this point, I was told I would be on intravenous chemo for the rest of my life. If the drug worked I would stay on it, if it didn’t I would change to another — but eventually I would inevitably run out of options.’
She wrote the post after starting her second infusion of a drug called eribulin. Kate is being treated at a specialist cancer hospital, where, as she points out, ‘you regularly see people walking the corridors crying, having been told there are no more treatment options, while others are experiencing the euphoria of finding out they’re clear’.
‘The bell is right outside the chemo ward,’ she told Good Health.
‘And the door is always left open so when I see patients, nurses and family going out to ring it, I’ve no choice but to sit and listen to the sound of whooping and clapping and cheering.
‘It sounds awful but I felt like going out there and saying: you might be celebrating now but you could be back here like me, before you know it.’
That is not what Tracey and Phil Payton, founders of the charity End of Treatment Bells, intended.
The Paytons — Tracey, 54, a PA, and Phil, 56, a computer consultant, brought the first bell to England in 2014 having come across them in the US, where their then eight-year-old daughter, Emma, was being treated for alveolar rhabdomyosarcoma — a rare soft tissue cancer.
Since then their charity has donated hundreds of bells, always at the request of patient organisations, with patients often raising the money to provide them for their hospital.
Emma had started chemotherapy at Royal Manchester Children’s Hospital in September 2013 and in January 2014, the whole family flew to Oklahoma so that Emma could have proton beam therapy.
‘This is where we first came across an end-of-treatment bell,’ explains Tracey. ‘To us, ringing it was something to aim for when counting down the days and weeks of treatment.
‘We knew there was a very high risk Emma’s cancer would come back, but getting through every procedure, therapy, X-ray, CT and MRI scan was a small win for us.
‘When Emma finally rang it on March 5, 2014, her treatment wasn’t over, but we were heading home and that was a reason to celebrate.’
Back home, Emma had three more rounds of chemotherapy.
The Paytons, desperate to do something to boost morale on the ward where she was being treated, paid £170 (€200) to have the country’s first end-of treatment bell made — and when her chemotherapy finished on April 9, 2014, Emma became the first child to ring it.
Now 18, and studying English at Liverpool University, Emma has thankfully remained cancer-free.
‘But there’s not been a day since when I haven’t worried about the cancer,’ says her mum.
‘Once it’s entered your life, the trauma and worry never end, whether you’ve rung the bell or not. The fact that it upsets some people, upsets me. But we know there are many more patients at every stage of treatment for whom the end-of-treatment bells are a focus and a goal.’
It’s possible the real problem lies not with the bells themselves, but rather the name — which rankles with those whose treatment will only end with their death — and their placement, on cancer units where patients have no choice but to listen to other people merrily ringing them.
Indeed, the Paytons originally envisaged the bells for children’s wards only, donating them to adult wards because so many patients asked for them.
Tracey now feels the real reason for the bells may have been lost.
‘Although they’re called end-of-treatment bells, they were never about saying: “I’m cancer free”,’ she says.
‘They mean different things to different people. Having stage 4 cancer but being here for another birthday is a really good reason to ring the bell.
‘Ring it whenever you want, for whatever reason you want —a stable scan, another round of treatment done, or just because you feel like it — to us it’s about each and every celebration on the way.’
Consultant clinical psychologist Frances Goodhart, author of The Cancer Survivor’s Companion, has worked with patients for more than 25 years, including palliative care.
She has ‘mixed feelings’ about the bells in adult settings.
‘A bell for a child, who perhaps doesn’t experience the same sense of isolation that adults feel at the end of treatment may be a tangible way of marking a milestone reached,’ she says.
‘But I’m concerned that having a formal way of celebrating a milestone in treatment institutionalises what is a private and often mixed experience for people.
‘However much care is taken not to pressure people into ringing it, the bell still creates an expectation of public celebration which does not necessarily fit the feelings being experienced,’ she says.
‘I would prefer to see more
‘In the Navy, bells were rung to mark the end of a task’
‘One patient blames it for their cancer returning’
discussion between the treating team and the patient about what to expect as treatment moves towards ending.
‘I don’t want to sound bah-humbug but I think we in Britain tend to be a little more private about our experiences and emotions and this doesn’t cross the Atlantic well.
‘Ringing a bell feels too public and too final when so often it is not the end of the story.’
In fact, in the US too, there has been some disquiet about the bell ceremony. Desperate to avoid upsetting patients back for treatment for the second and third time, nursing staff at Abramson Cancer Centre at The Hospital of the University of Pennsylvania, experimented with small handheld bells for patients in private rooms, but found the open-plan chemo suites couldn’t accommodate this.
Next they tried limiting bellringing ceremonies to patients who requested them, but found that others complained.
Finally, they formally re-defined what bell-ringing meant.
In discussion with patients they designed new signs mentioning some of the milestones experienced during treatment — a positive scan, the completion of treatment, or just a really good day.
Lindsey Zinck, head of nursing at the hospital, says patients are now happier and it’s taken away some of the guilt and ethical dilemma that nurses and patients struggle with.
Her advice to oncology nurses and institutions who also want to redefine bell-ringing is to ‘engage with your patients — and your patient advisory council if you have one — and try to think of innovative, inclusive strategies to accommodate what all patients with cancer are going through.’
Kate adds: ‘My advice is to be your own advocate. The most important thing is that you leave hospital armed with knowledge about your condition.
‘Ring the end-of-treatment bell if you like, but wherever you are in your cancer journey, be aware of the signs and symptoms of secondary recurrence, too.’
Dottie Rees, now seven and at school full-time, still undergoes six-monthly MRI scans as well as hearing, hormone and eyesight tests and will have regular checkups for the rest of her life.
‘Many children are in the same position as Dottie,’ says John.
‘She is in a sort of holding pattern, hoping that she doesn’t have to go through more treatment, but we know if we do we’ll work towards ringing the bell again. It