Her dying wish: why Toni Crews chose to let her dead body be filmed

When Toni Crews died at 30 of a very rare cancer, her parents were determined to carry out her last request – and allow a documentary team unprecedented access. Here, they share why filming the dissection of their daughter’s body will benefit so many others

Nestled together on the sofa, in the front room of their home on the Kent coast, Jo and Jason Crews are scrolling through a stream of Facebook comments. The evening before we meet, they’d shared a heartfelt post on a private Facebook page – an update for their tightknit community of grieving family and friends – with the latest news of their late daughter Toni’s remarkable posthumous journey. Overwhelmed with emotion, Jo reads out a few of the responses: “Even though she’s no longer here, this is her legacy,” reads one. “She’s so brave, very giving right until the end,” says another. We’re all firmly in lump-in-throat territory from the get-go.

In August 2020, when she was just 30 years old, Toni died from a rare form of cancer. The eldest of three sisters, she was raised in the house where we are now sitting. In her final few months, it was here that Toni returned to. As parents, Jo and Jason’s loss is unimaginably vast; the love they feel for their daughter clear in every sentence uttered. And yet, somehow, while navigating this deep tragedy, they have also been tirelessly at work, making every effort – however hard it felt at times – to see through their daughter’s last wishes.

The result is a groundbreaking documentary, due to be aired next month. In Channel 4’s My Dead Body, Toni’s story will be shared with the nation. In it, viewers will learn about her in both life and death: there are interviews with loved ones; her diagnosis retold. And viewers will also watch something never seen before: filmed under strict medical supervision, they will see her body being dissected.

“While it might be shocking and upsetting to watch,” the couple’s Facebook post explained, “it is intended to educate viewers on the science of cancer and its journey through the human body.” By understanding what caused Toni’s symptoms, her parents wrote, and building a timeline of how the cancer developed, they hope to support decades of research and improve the lives of countless people. You can see why Jo and Jason felt it best to give those who knew Toni a heads-up before the broadcast.

Full of life: an early picture of Toni.
Full of life: an early picture of Toni. Photograph: PR

“Both in life and death,” Jason says, “Toni put others first.” In their minds, this was a natural extension. “It was easier to watch than I expected. And it didn’t look like Toni, so I could mentally distance myself from it.”

“We always watched CSI, I suppose,” Jo jumps in, a muted smile. “It’s the more personal side that gets me: the minute’s silence where the students say thank you to Toni; where one of the medical team cries her eyes out. The fact that Toni made this journey, yet touched so many people regardless. It’s what she wanted – to be a force for good. And soon, she’ll do that for millions of others.”

The documentary is narrated with Toni’s own words – extracts of diary entries, messages and social media posts. Filmmakers collected archive recordings of Toni speaking and using specialist AI technology replicated her voice to the best of their ability. As the story unfolds, it’s almost like she’s there with you.

Toni’s caring nature, both parents recall, was apparent from her earliest years; always looking out for her younger siblings. She enrolled on an occupational therapy course at university, but soon dropped out. Instead, she found work in a care home, then started her own family. Towards the end of 2016 – still only in her mid-20s – Toni started to experience headaches and blurred vision. By October that year, she’d told her parents it was a rare cancer inside her tear gland.

Pictured: Professor Claire Smith Deputy Pro Vice Chancellor Education and Innovation. Head of Anatomy Brighton and Sussex Medical School
‘We needed to know how her family felt before making the film’: head of anatomy Professor Claire Smith. Photograph: Richard Ansett/Channel 4

“She downplayed it,” Jo says, “telling us it was nothing to worry about. But, of course, that won’t stop a mother being a mother.” Still, by all accounts, Toni’s prognosis looked positive. The following month, she underwent a major operation. Her cancer was aggressive and chemo-resistant. Removing her eye – with some surrounding tissue – offered Toni the best chance of survival. Jo needs a minute; Jason takes over.

“By early 2017,” he continues, “the surgeons were confident they’d taken all of the tumour out. With Toni and her doctors so positive, we weren’t too worried.” A devoted – and busy – single mother of two young children, Toni had little time to worry, either. Life slowly returned to normal. A year or so later, however, sometime in the middle of 2018, the headaches started to return.

“At first, the medics assumed it was just the nerves settling after her surgery,” says Jason, “but a scan showed another small tumour growing where her eye had been.” A few months later, Toni underwent her second major operation. “I took her up to Charing Cross Hospital… That was a big one,” he says, “taking away more soft tissue and shaving some of the bone socket. I spent five hours walking up and down the Thames waiting for news.” It was a brutal procedure, but again, afterwards, all signs appeared to be good.

In January 2020, Toni’s health once again took a turn. At first, there was a cough, then a small mark on her back appeared. By March, doctors had delivered their diagnosis.

“The cancer was back,” says Jason, a tight-squeeze of his wife’s hand, “but it had spread; metastasised.” Within a month she’d started chemo. From then, her health deteriorated. For both parents, this period is devastating to relive. But having her story shared, they both make clear, is what Toni wanted. “On 23 July,” Jason says, “I took her to the oncologist. He told us it was progressing too fast. He didn’t know how long she had, but said that we shouldn’t waste our time in hospitals, but go home and make memories.” Exactly a month later, Toni died at home.

Making the best of things: Toni models a brightly coloured eye patch.
Making the best of things: Toni models a brightly coloured eye patch Photograph: PR

In those final weeks, Toni continued to live as she always had – putting others first. She made photobooks for her kids and helped teach them about grief. She organised a baby shower for her sister and a family trip to Legoland. There were practical discussions to be had, too. “She wanted us to take the children,” Jo says, “and it was a given we’d take them.” And then came the most devastating of parent-child conversations: what Toni wanted to happen to her body afterwards.

Months earlier, Toni had, in passing, told her parents about these wishes. “She’d been fascinated from the outset about what her body was doing,” Jo explains, “and through the years that she’d been fighting cancer had run various pages online educating people about the illness. She’d post about symptoms, what to look for, what you can do. She wanted other people to be aware and make sure they took every precaution.”

So when Toni had mentioned, nonchalantly, that she wanted to donate her body to science, it came as little surprise to Jo and Jason. “She came out of the kitchen with a pile of forms,” Jo explains, “and told us that was her plan. She’d printed them all out, signed them and asked us to be her witness. To her, it was simple.”

“It was a typical Toni thing to do,” chimes in Jason. “Tick all the boxes on the form; do whatever she can; say yes to everything. We discussed it a bit: how they might keep her body for a while, and how she’d said they could take pictures. But we didn’t realise quite how groundbreaking what she wanted was at the time. I’m not sure she did either.”

Jo and Jason: ‘Toni used to post about symptoms, what to look for, what you can do.’
Jo and Jason: ‘Toni used to post about symptoms, what to look for, what you can do.’ Photograph: Roo Lewis/The Observer

In the days before she died, Jason and Jo – with the help of Toni’s nurses – put everything in place. Once she died, an expert team whirred into action.

At medical schools up and down the UK, those who choose to donate their bodies to medicine in death fulfil an integral, life-saving educational service. At Brighton and Sussex Medical School (BSMS), where Professor Claire Smith is Head of Anatomy – making her responsible for the donors’ programme – they’re often referred to as the institution’s “silent teachers”.

“We accept about 60 a year at our school,” Smith explains, sitting across from me at the Crews’ kitchen table, while the couple have their photograph taken next door. “In the UK, we need about 1,300 donors every year and that need is only growing. When you go to see any healthcare practitioner, you’d like to know that they’re confident in the structure of the human body: where it varies; how to engage with it.” Donors give students the gift of hands-on practice. Their value extends to professionals, too, whether in developing new surgery techniques, or planning particularly complex procedures.

Consent, Smith explains, happens in life: adults must sign themselves up for the donor register. “Some join on their 18th birthday,” she says, “others only decide to join after receiving a serious diagnosis.” The forms allow you to specify the limits of what you agree to: how long you can be kept; if you can be photographed or made anonymous. Strict regulations govern how donors are used: all medical schools must adhere to the terms of their special licence.

“This means medical schools can only use the donors to train specific healthcare professionals,” explains Smith. Anatomical teaching like this, therefore, remains behind closed doors out of necessity. “But we regularly receive requests for education from beyond our cohorts so, in 2019, we applied for a public display licence.” While some museums have permission to exhibit body parts, BSMS is the first medical school to have been granted one.

“It gives us permission,” she continues, “with a donor’s consent, to use their body to educate groups we otherwise couldn’t.” That includes yoga teachers and acupuncturists; beauticians and personal trainers, too. “They all work with the body,” she says, “and there can be real medical problems if these professionals don’t know anatomy. Both in causing harm, and missing signs for problems.” Plus, this licence extends to wider public education.

When someone on the donor register dies, a nearby medical school is notified. In August 2020, Smith picked up Toni’s paperwork. “We realised she’d ticked the ‘public display’ box, as well as the one waiving her anonymity,” Smith says, making her the first donor to do so with the school’s new licence. To Smith’s team, the possibilities seemed endless. “Our clinicians looked at Toni’s medical history,” she explains, “it was such a rare cancer. One in a million. Our surgeons would so rarely see it – there was so much learning to draw from it for our own students.” She made contact with the Crews family.

“It’s one thing to have legal consent,” she says, “but we needed to know how her family felt.” As conversations developed, the idea of a documentary naturally emerged. “Jo and Jason were confident it was precisely the sort of thing Toni would have wanted.” To Smith, the value of making a film was self-evident. “One in two of us will get cancer,” she says. “I myself have had it. This was a unique chance to help people understand what cancer is: how it spreads; the different types; its symptoms.”

Coordinating closely with the family, Smith’s team came up with a plan. “We created 12 workshops,” she explains, “inviting students from across Brighton and Sussex universities.” In advance, much research was done. Various scans were arranged, the team scoured Toni’s medical records, and spoke to the doctors who treated her. “And we talked to the family about her symptoms,” says Smith, “about how her illness had developed and how she experienced it, too.” It’s this type of invaluable knowledge, Smith says, that medics so rarely get access to. “We pieced together the fullest picture possible of Toni’s story,” she adds, “to help us trace the journey of cancer through her body.”

In total, more than 1,000 students sat through sessions in the school’s clinical dissecting room. Smith and her colleagues traced Toni’s cancer step-by-step, from the eye, down her neck, through blood vessels and major organs, dissecting as they went. Each class was filmed by the documentary crew – the confronting result is not for the faint-hearted. It’s the first time a dissection of a named donor has been captured on British TV; the first to be done in front of a public audience in almost two centuries.

This is an attention-grabbing format, but Smith believes it is a hugely worthwhile undertaking. “For those who attended in person and who see it on TV,” she says, “it’s helping develop people’s knowledge of the human body.” Viewers might learn to recognise symptoms; understand what’s happening inside their own bodies. And if it makes others think about their health, a career in healthcare or body donation? Then all the better. “Listening to Toni’s family,” Smith continues, herself emotional now, “it was clear that Toni wanted to do all she could to make sure nobody else went through what she did. Hopefully, this is a step in making that happen.”

Toni’s kids are at school today; they live here with their grandparents now. The family have thought carefully about how the film will be handled. “It won’t be online forever,” Jo explains. “We don’t want them stumbling on it. When they’re old enough, they can make an informed choice. For now they know there’s a film about Mum and she’s teaching doctors, that’s all.” Her file will be held at the medical school should they ever wish to read it.

When Toni died, no funeral was held. Instead, her body was handed over to Smith and her colleagues. In July this year, once the medical work was done, Toni was returned to her coffin and onwards to her family. “In some ways,” Jason reflects, “the grieving was paused while the research process happened. We kept talking about Toni going to places, doing things, it was as if she was still with us.” In August, the family held a small cremation service. The show’s broadcast next week will mark the end of this chapter.

“But with this film,” Jason wants to make clear, “and because the medics have kept some parts of Toni for teaching for years to come, she’ll go on educating – her legacy continues. Already hundreds of medical students have learned so much from Toni. And if one person watches the film, gets a lump checked, and it saves a life? Well, we couldn’t be prouder of our daughter.”

My Dead Body is on Channel 4 on 5 December at 10pm


Michael Segalov

The GuardianTramp

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