Broadcaster and former Silver Fern Jenny-May Clarkson talks about her brother's death from bowel cancer last year, amid wider debate about whether a screening programme is failing Māori and Pacific New Zealanders.
He was dying and the doctor said nothing could be done.
Jeffrey Coffin, 56, got the news at an appointment at Waikato Hospital, one of dozens endured after a bowel cancer diagnosis nearly two years earlier.
He, his mum and sisters sat stunned on plastic chairs.
"It's like the whole room closing in on you," recalls Breakfast news presenter Jenny-May Clarkson, the memory catching in her throat.
"You don't know where to look. What to say. I didn't want to look at my mother, because I knew the pain she would be going through ... I was too afraid to speak to him."
Her brother broke the silence.
"I remember him saying, 'Oh well, that's that then.' And he walked out.
"But he still talked about the fact that he was going to beat this. And even in his last breath, he didn't want to go. He fought to the end."
That came on July 26, 2018, at home and surrounded by loved ones.
Racial bias and birth: From the cradle to the grave
"You knew at that point that there was no more pain," Clarkson says. "It really was a privilege to hold his hand, to tell him it was okay."
• Māori, Pacific straight-to-interview policy likely to be copied: expert
• Avoidable deaths and lower life expectancy for Māori and Pacific a travesty, medical experts say
• Racial bias and birth: 'We're looking through the lens of Pākehā'
Jeff was the oldest and Clarkson the youngest in a brood of six children raised by Waka and Paddy Coffin in the King Country township of Piopio.
As a kid she loved visiting him in Rotorua, where he worked as a fitter-welder.
"I'd hang on every word, every story," she says.
Later, Jeff moved to Australia. He saw his little sister represent the country at netball, join the police, and become a sports broadcaster on 1 News.
He moved back to New Zealand a few years before she had twin boys in 2016. At some point he got symptoms and in the fight that followed, his parents and partner Liz cared for him.
It would be the second time the Coffins buried a son; Charles died of meningitis at 10.
Just over three months after Jeff's death, Waka suffered a fatal heart attack.
"I believe that part of it was him having to watch his son go through all of that," Clarkson says. "And in the end I just think it was a broken heart."
One day while reading the news, her stomach knotted and she couldn't breath; the first of several on-air panic attacks.
It was grief finding a way to the surface, she's since realised - the build-up of watching Jeff deteriorate; that terrible news in the hospital room; being at his deathbed.
"There's a lot of suffering for those around [cancer]," she says. "It has a ripple effect on the rest of the family. What we saw, what we heard."
An unfair system?
Bowel cancer (also called colon, rectal or colorectal) kills more than 1200 New Zealanders every year - more than breast and prostate cancer combined.
Early detection is critical to chances of survival, but the disease can be symptomless and others can be reluctant to act when they appear.
For this reason, health authorities piloted a free screening programme in Waitematā DHB from 2012. West and North Aucklanders aged 50 to 74 years were invited to send in faecal testing kits that detect tiny traces of blood that may signal pre- or bowel cancer. If positive, a colonoscopy is done.
Lives were saved and the previous National-led Government pledged almost $200 million to extend it nationally by June 2021.
The roll-out is at the halfway point, with 10 of 20 DHBs offering screening.
Health Minister David Clark trumpeted the screening when it extended to Palmerston North and Manawatū this month, saying in two years it had detected 420 cancers and led to the removal of hundreds of pre-cancers.
"Bowel cancer is the second-highest cause of cancer death in New Zealand - but with early detection it can be successfully treated nine times out of 10. That's why this programme is so important," his press release stated.
Not mentioned: screening is more likely to deny Māori and Pacific New Zealanders that fighting chance. That's because the starting age was moved up a decade when the screening pilot went national, to 60.
More than a quarter of bowel cancers strike Pacific New Zealanders between 50 and 59, the latest annual data shows, with one-in-five Māori bowel cancers taking hold in that time.
That compares to about 11 per cent in non-Maori and non-Pacific.
Health workers, academics, and organisations including Bowel Cancer NZ have lobbied for the screening to be dropped to age 50 for Māori and Pacific New Zealanders.
The Māori Medical Practitioners Association has labelled the situation "unconscionable", saying the age range "systemically discriminates against Māori and is inconsistent with good public health policy".
Dr David Tipene-Leach, the association's chairman, who was made a member of the New Zealand Order of Merit for services to Māori Health, told the Weekend Herald current screening widens the health chasm between Māori and Pākehā.
"It just does not seem at all sensible that the minister is saying, 'Let's do equity' and the ministry is doing otherwise."
His concern is shared by district health boards. Auckland DHB recently presented analysis to Parliament, which plotted the national age range for bowel cancer diagnosis.
One box graph showed each year from 1996 to 2016. The starting age for screening - 60 years old - was represented by a red line. Large numbers of Māori, Pacific and Asian cancer patients dropped dangerously below it. Graphs for "others" were always above.
Officials weigh up a response
The ministry commissioned a report on the problem last year. It concluded screening should start from 50 for Māori, to deliver the same benefits as for non-Māori.
It ruled that out, however, because of a lower rate of bowel cancer among Māori and the risk of harm from colonoscopy, such as infection and the possibility of false positives.
Lowering the age would "significantly stretch" DHBs' capacity to provide colonoscopies, the report warned, and - apparently straying into the political - "there is also concern about the acceptance of a lower starting age for Māori". More data was needed, the report stated and this would come from the national roll-out.
The ministry accepted the findings and promised to think about running a pilot of lowering the age for Māori "in three to four years, when data to inform this decision is available".
Amid strong backlash, a hui with Māori researchers and health workers was held in February and officials were given a unanimous message: drop the screening age to 50. The same happened when a meeting with Pacific health leaders was held in July.
Dr Jane O'Hallahan, clinical director of the ministry's national screening unit (NSU), told the Weekend Herald that it was "exploring implementation options" to drop the age for Māori and Pacific people but no decision had been made.
"The ministry accepts the latest clinical data shows that the incidence of colorectal cancer in Māori and Pacific peoples has increased to now be close to the non-Māori and non-Pacific rates and that they tend to get bowel cancer at a younger age so may benefit from starting bowel screening younger."
O'Hallahan says modelling indicated if the age was lowered to 50, then 60 extra bowel cancers a year could be found in Māori, and 25 extra in Pacific New Zealanders. For context, in 2016 there were 232 bowel cancers in Māori registered, with 81 deaths.
"Every effort" was being made to boost Māori and Pacific participation in the current programme, she says, including making repeat phone calls to people who hadn't returned a kit for testing.
The focus was on the national roll-out while dropping the age was being looked at, she says.
"As has been the case in other countries that have introduced bowel screening, it is important to get the foundation right - to establish the programme within available resources first before any changes to parameters are considered that may increase demand, particularly on colonoscopy services."
Inaction in the face of need
Dr Rawiri McKree Jansen, who attended the February hui and is clinical director at the National Hauora Coalition, one of the biggest Māori primary healthcare organisations, says expecting Māori to patiently wait for the age to be dropped "beggars belief".
The situation was institutional racism, he says - a term that describes how the procedures or practices of organisations result in some groups being advantaged.
"Everyone asserts that equity is the priority, from the minister to the director-general to the tea lady. Everyone is committed to equity but actually delivering inaction in the face of need."
McKree Jansen says a colleague at Papakura Marae health clinic was a case study of why things had to change. Also 56 and Māori, he had no symptoms except slight constipation, for which he booked to see a doctor. By 5pm that night he was told he had incurable bowel cancer.
"He didn't have bleeding from the bowel. The only way of changing this story - of him being discovered having multiple metastases, the tumour was inoperable - is to have a bowel cancer screening programme for Māori that starts at age 50."
Dr Sue Crengle, medical adviser to Bowel Cancer NZ and associate professor at the University of Otago Medical School, says the current situation was untenable.
"There's no good reason not to do something now, apart from the will."
'He never had that option'
Clarkson's brother was 54 when diagnosed and 56 when he died.
There's no way to know if having screening available would have made a difference, she says and she wishes he'd got his symptoms checked sooner.
All the same, she'd like another person in his position to have free screening available.
Her family's pain has been so great and the ripples are still moving.
"Having that test available, could that have saved his life? I don't know. Quite possibly. But he never had that option."