51-year-old UK woman Avril Barker will be travelling to NZ to take up assisted dying. She was diagnosed with terminal cancer in November last year. Video / NZ Herald
The only moment Avril Barker cries is when she admits dying on her own terms in New Zealand will mean being separated from her family in the United Kingdom during her final moments.
She will fly 30 hours across the globe alone, nursing an extremely rare terminal cancer that makes any kind of travel painful, to take advantage of New Zealand's newly implemented assisted dying law.
It's the price she says she's willing to pay to die with dignity - as "still myself".
The 51-year-old dual UK and New Zealand citizen has been in West Yorkshire since 2018, when she returned home to be with her mother who was suffering with a rare autoimmune disease.
"I just made the choice to come back and spend the last chapter of my parents' lives with them. I knew New Zealand would always be there," Barker says.
"I didn't realise it'd be my last chapter as well."
Barker had spent the previous 20 years in Wellington, after immigrating from the UK in 1998 on a work visa inspired by a holiday as a uni student a decade earlier, in which she "fell in love with the place" and vowed to live here one day.
But what she describes as the "horrendous year" of 2021 living in Bradford in the UK has thrown her life into turmoil.
Her 54-year-old brother Ken died at the beginning of last year while living in Perth and the family were unable to attend his funeral due to Covid travel restrictions. Barker's mother Anne was then diagnosed with terminal bowel cancer.
Avril Barker and her mum Anne. Photo / Supplied
UK woman Avril Barker, 51, will be travelling to NZ to take up assisted dying after being diagnosed with terminal cancer in November last year. Photo / Supplied
In November 2021, Barker received her own diagnosis of mucosal melanoma - an extremely aggressive cancer with a 5-year survival rate of only 14 per cent.
Watching her 79-year-old mother die painfully in February 2022 crystallised in Barker's own mind that she could not go through the same thing herself.
She had kept the full details of her own diagnosis from her mother, who was hospitalised over the New Year and transitioned from hospice into palliative care at her North Yorkshire home in January.
"The time that I spent with [Mum] was very confronting for me," Barker says.
"I thought 'Oh, my God, I'm facing this potentially in the next year'. At the end, I just wanted her to go because she was suffering. Having nurses coming out every day, increasing pain meds. Many days she was just not awake, she couldn't eat. She was very unwell. It's very hard to witness that. And my mum's a very strong woman.
"That's when I decided that I couldn't, I didn't want to die that way. And I said to my sister, who was the only one that was I telling everything to ... we were just sort of keeping some details away from mum and dad. But I said to her, one day, when it is my time, I want to go back to New Zealand and have an assisted death."
Now, six months on from this decision, Barker has researched the process and is committed to making it a reality at short notice - potentially in the remaining months of 2022.
A successful recent bout of radiotherapy has shrunk the tumour in her abdomen and potentially given her up to six to 12 months more time.
But she admits the situation is unpredictable and could hinge on the findings of any new scan of the cancer's growth - which has spread to her lymph nodes. Barker's next scan is next month.
Assisted dying for terminally ill adults is not legal in the UK. In England, Wales and Northern Ireland, assisting a suicide is a crime punishable with 14 years in prison.
Barker spent 20 years in Wellington, after immigrating from the UK in 1998 on a work visa inspired by a holiday as a student 10 years earlier in which "fell in love with the place". Photo / Supplied
The Barker family, Avril far left. Photo / Supplied
While there is no specific crime for assisting suicide in Scotland, it is possible that helping a person to die could lead to prosecution for culpable homicide.
Campaigning for assisted dying is a hot topic in the UK, just like it was leading up to New Zealand's own referendum on the End of Life Choice Act, which was passed at the 2020 election with 65 per cent support.
The latest data shows that 400 people have applied for an assisted death in New Zealand up to June, and 143 people have died. More than half were older than 65, and the majority of applicants for the service had been diagnosed with cancer.
A recent poll in the UK found that 84 per cent of the public support assisted dying for terminally ill adults.
UK campaigning organisation Dignity in Dying has also had more than 155,000 people sign their petition calling for a law change, which was debated by MPs in July.
Barker was herself able to vote in favour of New Zealand's End of Life Choice bill at the 2020 referendum, because she was a recently departed Kiwi citizen.
She says she supported assisted dying legislation long before she was confronted with her own terminal illness.
"I've always supported it. I had a friend in New Zealand, he was 98 when he died, but he spent the last year of his life in a home. And every time I visited him, it was so sad to have him say I don't want to wake up tomorrow. I had thought about that many years ago."
Since her diagnosis in 2021, Barker has stopped working in a local cooperative vegan cafe in Bradford and is undergoing palliative immunotherapy and radiotherapy. Photo / Supplied
Since her cancer diagnosis in 2021, Barker has stopped working in a local cooperative vegan cafe in Bradford and is undergoing palliative immunotherapy and radiotherapy. Photo / Supplied
The main challenge with Barker's journey will be the logistics of arriving in New Zealand early enough to get approval from two Kiwi doctors.
This will mean a definite separation from her family in the UK for the final months of her life - likely several months before she dies.
"They all support me but obviously, I think my dad's too old to travel now, so he wouldn't be able to. My sister might be able to come over. She certainly could. I guess my niece and my nephew and the kids … You know, we're just normal people, we don't have lots of money. Leaving my dad - that would be the hardest thing.
"That's the thing we want to get across to the MPs here is that, you know, I would have to leave my family months before I need to, to ensure I can get back to New Zealand so that I can get the process sorted.
"We just hope that it's not as soon as the doctors think. I'm certainly trying everything else to help me, you know, good diet supplements."
A Dignity in Dying spokesperson was also keen to clarify that it is "highly unlikely" that New Zealand will become an international destination for assisted dying because of the citizenship requirements associated with it.
Over two decades living in Wellington, Barker most recently worked at the University of Otago's medical school as a manager in the Department of Surgery and Anaesthesia. Photo / Supplied
Avril Barker with her parents. Photo / Supplied
To be eligible for New Zealand's assisted dying law, a person must be a citizen or a permanent resident, aged 18 or over, terminally ill with a prognosis of six months or less and with the mental capacity to make the decision.
The Dignity in Dying spokesperson said such citizenship requirements are in place almost everywhere some form of assisted dying is legal.
But the spectre of "death tourism" does exist in one European country.
Nearly 350 Britons have now ended their lives at nonprofit organisation Dignitas which provides physician-assisted suicide in Switzerland. Family and friends who go with their loved one and are present during the process face the risk of prosecution and up to 14 years in prison when they return to the UK.
Europeans in countries without assisted dying laws do frequently travel to Dignitas in Switzerland, but at an average cost of £10,000-£15,000 (~ NZD$20,000-$30,000) for UK residents to travel, get accommodation and have the procedure itself, it is out of reach for most people.
The journey also requires people to be well enough to travel, meaning people often die earlier than they would ideally like to.
"Avril's experience shows why British MPs can no longer ignore the problems caused by the blanket ban on assisted dying in the UK," the Dignity in Dying spokesperson said.
"By failing to provide dying people with the choice and control they want and need, we are effectively outsourcing death to other countries, leaving people like Avril to shoulder the eye-watering financial, logistical and emotional cost alone.
"Five million people in New Zealand have access to this option at the end of their lives, but in the UK, terminally ill people like Avril have little choice: they can wait for nature to take its course and face uncertain and painful deaths, like Avril's mother, take matters in their own hands with no medical guidance, or travel far from home - often prematurely - to seek an assisted death overseas.
"It's time for the UK to follow in the footsteps of New Zealand."
Avril Barker and her mum Anne. Photo / Supplied
UK woman Avril Barker, 51, will be travelling to NZ to take up assisted dying after being diagnosed with terminal cancer in November last year. Photo / Supplied
Barker says she has some extremely close Kiwi friends she has arranged to live with when she arrives back here to take up assisted dying.
"I've got no family in New Zealand. But I travelled there 30 years ago, you know, I've friendships 30 years long. So that's like family. When you're still single, you tend to make strong friendships like that," she says.
Over her two decades living in the capital, Barker most recently worked in administration at the University of Otago's medical school as a manager in the Department of Surgery and Anaesthesia. For the majority of her Kiwi years she was a public servant in the Department of Internal Affairs.
Since her diagnosis in the UK, Barker has stopped working in a local co-operative vegan cafe in Bradford and is undergoing palliative immunotherapy and radiotherapy. She is planning to move closer to her father and other family in North Yorkshire - which is a painful, often impossible, 90-minute drive away.
"As much as I was born in England, I lived here throughout my teenage years and my 20s, my Dad was in the army so we've always moved around, I never ever thought I was going to leave New Zealand. I love it. New Zealand really is my home in my heart," Barker says.
"I think to go out surrounded by people that I love, that love me, would be the best option for me. I don't want months of wasting away. For me it would destroy me mentally if I was just lying in a bed.
"I just want to go out when I'm still me, still positive. It frightened me how long it took my mum to die."
