One of the youngest terminally ill campaigners fighting for assisted dying has told MPs that having control at the end of her life “would mean everything”.
Maddie Cowey, 27, was diagnosed with sarcoma, a rare and aggressive form of cancer, aged 18. It is incurable and she now has around 30 tumours across both lungs.
She said: “Facing the fact that this is going to kill me from the age of 18 has meant that I’ve had to think about death in a way that a lot of young people don’t have to.”
Sharing her story at a meeting in Westminster on Monday night, Maddie described having various surgeries and therapies over the years.
There are no approved treatments for her disease and she is now taking part in her second clinical trial.
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Maddie has had to think about death more than most people her age (Image: Maddie Cowey)
Maddie said she had made friends along the way “who have sadly died. I lost a friend to sarcoma just a week ago, she was only in her 30s.
“So I’m surrounded by this idea of it killing people and it killing me. Assisted dying to me is the most compassionate thing we can do for someone at the end of their life if that’s what they wish to do.”
Maddie, of south west London, went on: “I don’t know what’s going to happen with my disease. It could spread to other organs, it could continue to grow in my lungs.
“[Access to assisted dying] would definitely just give me more sense of control. Cancer has taken away so much control over my life.
“My death is inevitable. I don’t want to die. I’m not suicidal, I want to live. But I know this is going to happen so being able to choose how it happens would mean everything.”
Maddie was among more than a dozen people with personal experience of terminal illness or difficult deaths who spoke during the event hosted by Kim Leadbeater – the Labour MP leading the assisted dying Bill.
Laura Perkins, 45, told of the horrifying moment when her mum’s mouth cancer broke through her neck.
Laura’s mum suffered a horrific death from cancer (Image: Dignity in Dying)
She said: “In the final two weeks of my mum’s life, the putrid smell that was so hard to stomach was a warning sign that the tumours would soon tear through the skin.
“As I tried to calm her down and divert her from the blood and pus that poured from her neck, she rocked back and forth and begged to die over and over again.”
Laura’s mum Joanna, 72, had been diagnosed with ovarian cancer in 2018, which later spread to her liver. Another primary cancer was then found growing on her tongue.
The pensioner endured surgery to remove part of her tongue, costing her the sight in her right eye and affecting her balance, followed by chemotherapy.
After a few weeks, she decided to stop the treatment and focus on dying peacefully. But tests showed the tumours in her liver had shrunk.
Laura said: “The medical team solemnly informed us that it was more humane to die of liver cancer than mouth cancer.
“So, in her fragile state, she was advised to start a course of radiotherapy on her throat to keep those tumours at bay, to allow the liver cancer to grow back as this was the better death.
“At every radiotherapy session she would weep as she was strapped to the bed, her head covered with a mask that was bolted to the table to keep her still.”
Liz’s dad Bob was left traumatised after trying to end his life (Image: Liz Poole)
The radiotherapy did not work and as the tumours grew, Joanna became unable to eat solid food for six months.
Laura said her mum had access to excellent palliative care, morphine and sedatives, but they could not keep her calm or asleep for long.
She added: “Because we don’t have access to end of life medication, my mum suffered inhumanely.
Had assisted dying been legal, knowing that she could make a choice to end her inevitable suffering when things became too much would have given her so much comfort and peace of mind.”
Liz Poole,47, also shared her dad Bob’s story. He was diagnosed with non-smoking-induced lung cancer in 2018 and, after four years of deteriorating health, decided to take his own life.
His family found him on the floor having taken an overdose and he was rushed to hospital. The 81-year-old suffered a broken hip, requiring a hip replacement, and the traumatic experience triggered a mental health crisis.
Liz said: “He went into a week-long state of psychosis and was scared and confused, then was in and out of hospital suffering various infections.
“After the attempt, we had to sit back and watch as he begged us to let him die. Three months later he died in a hospice weighing five and a half stone.”
Liz said her dad received excellent palliative care but it “did not stop the suffering. It didn’t stop him waking in the night in pain, in a cold sweat, nor did it improve his mental health, desperately unhappy but being kept alive.”
Opponents have argued that changing the law may lead to people feeling pressured to end their lives for fear of being a burden, or cost the NHS money.
Liz, of Henley on Thames, said: “What I can tell you from my experience is that my dad did feel a burden, but that wasn’t why he wanted to die.
“He wanted to die because he was so desperately unhappy to have that quality of life. His suicide attempt was unsafe and resulted in a significant amount of NHS treatment.
“So is it better to leave the law to avoid the so called mights and maybes, or change it to ensure we stop the cruelty, suffering and unsafe practices that we know are happening right now?”
Ms Leadbeater was moved to tears by testimony shared during the meeting, which was attended by MPs including some who had not yet decided how they would vote in the Commons on Friday.
The Spen Valley MP urged colleagues to listen to the experiences of those affected by terminal illness.
She said: “This is what I think some MPs mustn’t be hearing because how can you hear these stories and tell me there’s not a problem?
“How can you tell me that these families should not have a choice other than what we’ve heard tonight? I just refuse to accept that.”