‘I don’t want to die, but I don’t want to endure endless amounts of pain’

When Tom Davenport was diagnosed with terminal bile duct cancer, he worked hard to live what life he had left to the fullest.

The 48-year-old music teacher, who lived in Scarborough, performed in a fundraiser called ‘Gig of a Lifetime’, a concert put on to pay tribute to all of his achievements, with hundreds of family and friends in the audience. Tom saw his favourite band KISS live in Manchester with his young son Joss, married his partner Lucy and travelled to Disneyland Paris for a special holiday. 

As his condition deteriorated, Tom moved into a hospice where he received ‘wonderful care.’ There, he and his loved ones hoped the end of his life would be peaceful. But his final day on August 28, 2023, was nothing short of a nightmare, Lucy and Tom’s sisters, Ailsa and Janet, tell Metro.

‘It was about 5pm when he started vomiting,’ Lucy explains.

‘He was attached to three syringe drivers [small pumps which give a continuous flow of medication to manage symptoms of pain] with morphine. At first, it was “normal vomit” then it changed. I remember looking at Janet, a nurse of 40 years, and seeing the shock on her face.’

Tom’s cancer had obstructed his bowel, which led to faecal matter rising through his body and out his mouth. Lucy, Janet and Ailsa held up his head to stop him choking while their own stomachs turned at the smell emanating around the room. Whenever he got a chance to speak, Tom told his wife Lucy he loved her. The family felt ‘helpless and desperate’ for Tom’s suffering to end as the hours passed. 

Five hours later, he died.

‘I go over those moments again and again in my head and think, what more could have been done?’ Janet asks.

‘What Tom needed was the choice to say enough was enough and take something to end his pain. But they [medical staff] would have been prosecuted if they’d given him drugs to effectively end his life; their hands were tied. I’ve worked as a nurse, midwife and a health visitor; I’ve seen a lot of people die but I’ve only seen one other person have as traumatic a death as Tom.’

‘It was like a horror movie,’ Ailsa echoes. ‘Tom’s death was terrible and we all have to live with the effects of that now, particularly Lucy. The look on Tom’s face of terror and horror, that’s going to be with us forever. He would be horrified to think that was our last memory of him.’

With Tom’s final hours playing on their mind; Ailsa, Janet and Lucy reached out to Dignity in Dying, a group which campaigns for a change in the law to allow assisted dying as a choice for terminally ill, mentally competent adults, alongside access to high-quality end-of-life care. 

Around the world, 400 million people have legal access to some form of assisted dying but, for the 67 million people in the UK, it would be breaking the law to help a terminally ill person end their life. 

‘This isn’t about shortening people’s lives,’ Lucy says.

‘It’s about shortening their deaths and giving people a choice about how they die. If Tom had had that choice he’d have grabbed it with both hands. The way the law is now, and the fact we see people prosecuted for helping their loved ones die with dignity, that’s archaic.’

Tom had been diagnosed with stage four bile duct cancer on September 2, 2022. He’d had little in the way of symptoms; Lucy noticing his eyes had turned yellow on a Bank Holiday walk was what led to a visit to A&E.

After some tests at Scarborough Hospital, it emerged that Tom had bile duct cancer. The prognosis was very poor with a five-year survival rate of 2%. But despite that, Tom stayed positive and rang his sisters and wider family to explain the news and next steps.

‘He was a mentally tough person, really resilient,’ Lucy remembers.

‘But there were days which were harder than others. There were times where he made me promise that if he got to the end, and he was suffering in some way, that I would help him end it all. He discussed that quite a lot, not just us but with his doctor. But that idea of helping Tom die would mean I’d be in prison, so there’d be no-one around for our son. It was definitely something we discussed as a couple, but it just wasn’t an option.’

A week before he died Tom hosted family for his ‘last beers’ in the sunshine. He confided in his sister Ailsa that he was “ready to die” and, in a private conversation with his mother-in-law Diana, asked her to take care of Lucy and Joss. 

‘He was saying goodbye to everyone,’ Janet explains.

‘Tom was completely mentally competent, he could have made a decision to take something and pass away peacefully. But he didn’t have that choice.’

Janet, Lucy and Ailsa have visited the House of Commons twice since Tom’s death and are ‘determined’ to keep raising their voices to ensure no more families go through what they did.

‘Since we’ve been part of Dignity and Dying and had a look at the figures, the statistics say that about 6,400 people die in pain or with symptoms which can’t be controlled every year in this country,’ Janet adds.

‘That’s just too many. That’s seven a day.’

A potential change to the law on assisted dying has faced backlash from several MPs, such as East Wiltshire MP Danny Kruger. The politician, the son of television presenter Prue Leith, cites his religious beliefs as the reasoning behind his viewpoint.

Mr Kruger has instead called for improvements to palliative care, which groups such as Care Not Killing and Our Duty of Care also argue for.

Elsewhere, a high-profile campaign for change is being led by the broadcaster, Dame Esther Rantzen. The 84-year-old has stage four lung cancer and has joined the Dignitas assisted dying clinic in Switzerland. It costs anywhere between £6,500 to £15,000 to have an assisted death in Zurich, where the facility is based. For many, the cost is simply too high.

Terminally ill Jenny Carruthers lost her partner, guitarist Gypie Mayo who played in the band Dr Feelgood, in 2013 when he died from liver cancer. The illness had left the musician ‘screaming in agony’ in his final months.

In 2018, Jenny was diagnosed with breast cancer which later spread to her bones. The cancer is now incurable, and she says the Dignitas clinic is not only too costly, but too risky for her family.

‘My children were young when Gyp died,’ Jenny, 56, tells Metro. ‘It was really difficult.’

‘Now they’re in their early twenties and very well aware of what I’m heading to, and they fully support being part of the Dignity in Dying campaign. There is the idea that we could have a peaceful ending together in Switzerland, if I was lucky enough to have that kind of money. But, at that stage, I would be opening them up to breaking the law and being arrested on their arrival back in the UK.

‘Dignitas has crossed my mind but it just isn’t what I’d choose. I’d want to die at home after saying goodbye to my family, at peace in my own bed.’

While speaking to Metro, Jenny pauses to check notifications from the AuroraWatch app on her phone. She plans to take a picnic blanket and a couple ciders to a field near her home in Bath that night, to try catch the Northern Lights which are forecast to appear.

Jenny is keen to stress that she loves the opportunities and small joys life brings, but that the choice of an assisted death is crucial for her future when her incurable cancer becomes too much to bear.

‘I don’t want to die,’ Jenny, who used to work in an acute gastro ward for the NHS, explains.  ‘I have absolutely every zest for life going. What I don’t want to do is endure endless amounts of pain which take away my personality and simple everyday pleasures.

‘The impact of a terminal diagnosis hits every area of your life and people are very different in how they respond to it. I don’t want to lose myself in some sort of morphine world where my loved ones can’t have a conversation with me, that would be horrific.’

For Jenny, she hopes change in legislation comes desperately soon. She realises she, and other terminally ill patients like her, are running out of time.

‘I don’t understand really how we’ve [ the UK] been so far left behind by the rest of the world,’ she says. 

‘We’re talking about how Keir Starmer is committed [to a vote on a change in legislation]. But it could take a few years of back and forth, ultimately we don’t know how long change will take. Who knows what can happen to my health, to Esther Rantzen’s health during that time. It’s probably too late for her, it’s probably too late for me. But I think we’re both probably quite aware that it might not be our turn. 

‘A family should never have to worry about breaking the law, they should be able to hold hands with a loved one and find peace.

‘If they do, they’ll be able to repair their grief more quickly.’

Meanwhile, while still coming to terms with the horrors of his death, Tom Davenport’s family are comforted by the mark he left on everyone he met during his 49 years. While the music teacher was devoted to his job, his biggest passion was his family; his three sisters and brother, as well as Lucy and Joss. His favourite phrase was ‘Daddy first, music for pudding.’

‘With Joss, Tom and I were always really honest with him during the cancer journey,’ Lucy adds.

‘He’s a clever boy and very curious. Joss still asks questions and I’ve tried to explain that his dad was very sick and it was a difficult time for him; but he’s happy and peaceful now.’ Joss wanted to tell Metro readers that his daddy was ‘my best friend and the best dad in the world.’

Visit www.dignityindying.org.uk/petition to back Dignity in Dying’s campaign