Jacquie's story: The human cost of health inequities

Hei Āhuru Mōwai trustee, Māori nurse, health researcher, professor at Auckland University of Technology, and long-time advocate for equitable cancer outcomes in a Eurocentric and racist health system, Dr Jacquie Kidd faces her own cancer diagnosis that came too late.

This story was adapted from an article by Kaitiaki NZ Nursing co-editor, Mary Longmore - click here for the full article.

After a lifetime of fighting for other people’s lives Dr Jacquie Kidd (Ngāpuhi) is facing the end of her own. Diagnosed last year with bowel cancer at just 58 — two years shy of the aged-60 threshold for free screening, she says “it felt inevitable – why should I be any different to anybody else?”

Māori die on average seven years earlier than non-Māori, are 20 per cent more likely to get some form of cancer and twice as likely to die from it due a complex range of barriers for Māori to access timely cancer diagnoses and treatment.

Colonisation, subsequent loss of resources, poverty, institutional racism and intergenerational mistrust in a culturally unsafe health system that pays little heed to the Māori concept of hauora which embraces tinana (body), wairua (spirit), whānau (social wellbeing) and hinengaro (mental wellbeing) are all contributing factors which Kidd says combine to lead whānau to reject health services — or delay accessing them until in desperate need, often too late.

Some fixes, however, are breathtakingly simple — such as lowering the free cancer screening threshold for Māori. In 2017, after several years of talk, regional pilots, cost-benefit analyses and the achingly slow grind of health bureaucracy, a national bowel screening programme was launched for those aged 60-74.

What’s good for Europeans remains Aotearoa’s “unspoken starting place” for cancer screening, Kidd believes. Calls from Bowel Cancer New Zealand and health advocates for equity-based thresholds were ignored.

Six years later Te Whatu Ora now plans to reduce the bowel screening age to 50 and roll it out nationally in late 2023. For Kidd the move is achingly bittersweet.

“Had early screening been introduced for Māori when it should have been, I may have been caught with a polyp and not now have terminal cancer.

“We knew what ages we needed to look at, had the evidence for it, but the later age was established anyway,” recalls Kidd. “So many of us were advocating and saying, ‘you’re going to kill people because of the way you’ve structured it’.”

For Kidd, the six-year delay was deeply frustrating even before her own diagnosis. She says it was due largely to fears of an anti-Māori backlash.

“Why can’t we do this? The science is saying we need a lower screening rate. Giving in to the power of the dominant culture’s belief structures is exactly what systemic racism is,” says Kidd.

There were also barriers due to lack of infrastructure. A hard-hearted reluctance to deal with the extra work and surgeries that would be needed once the full extent of cancer rates emerged won out over the proven human cost; an approach which Kidd says is “just nuts”.

“‘If we screen this many people, we’re going to need this many colonoscopy spaces and this much follow-up care...So let’s keep our heads in the sand and make sure the screening criteria won’t force us too far over what we can cope with.’ That’s the mentality we’re up against.”

'Everything happened really fast’

In early 2022 Kidd began experiencing pain and some bleeding. She put it off for a few months saying the symptoms seemed mild. She thought improving her diet and reducing stress levels might help. Eventually she asked a GP to refer her for a colonoscopy. Being too young for free screening, he only referred her as she had private insurance. After that, “everything happened really fast.”

The colonoscopy found a tumour in her bowel — but also clear margins and lymph nodes and no apparent metastasis. “I was going through the whole ‘oh my God I’ve got cancer I’m gonna die’ thing as well as ‘I need to fix my work up as I’m gonna be out for a while’ and I need to tell the kids – what am I gonna tell the kids? And there was all of that and that all happened within six days.” A week later, Kidd was having surgery to remove her lower bowel and “they told me I would be fine.”

As a researcher, Kidd said she was always coming up against this “really challenging” idea of inevitability among Māori whānau when it came to poor health and early death.

“People would say ‘This is just what happens in our whānau – we get diabetes, we get breast cancer, we get ovarian cancer – we don’t live until we’re 60.’ It is normalised,” Kidd says. “But underpinning that is this idea that dying is not the worst thing that can happen to you.

“Many people I talk to think being stuck in a hospital without any of their cultural needs being met and dying that way, separated from all the things that matter to them, is their worst fear.

“That’s why Māori don’t go see their GP, fear of how they will be treated in a racist system. It’s not low health literacy, it’s a complex cultural literacy that leads them to make such decisions.”

Poverty also plays a part. The cost of going to the doctor and to take time off work; the financial, time and energy implications of serious illness is a major barrier. “Can I afford to hear what the doctor is going to say?”

Culturally unsafe Kaumātua had warned Kidd for years that working with the health sector meant she would have to “leave my tikanga at the door”. “I’ve come to a much deeper understanding of what that means, and why people vote with their feet by not accessing health care. When you get to a certain point, tikanga is far more important.”

Kidd has always sought to amplify whānau voices in ways and spaces that can support change. Her research focused primarily on whānau-based understanding of problems and their solutions. She is also involved with a project to eliminate racism in the health sector — an unfortunate byproduct of her quest for equitable outcomes for Māori, “and I really wish it wasn’t.”

Her non-Māori appearance meant she hadn’t had to confront racism, but it also gave her access to the Pākehā world. “I could get into spaces and say things that they couldn’t. My nursing training put the issue right in front of me. I thought ‘You can either ignore this and cruise on with your life. Or do something about it’.”

Kidd is deeply frustrated so little appears to have changed in Māori experiences and outcomes despite all the work that’s been put in over the years to create a safer health system for Māori.

“I don’t see cultural safety in nursing practice. I see pockets of it but the institutions we work in are powerful; racism is so baked into it, we’re busy and just go with the flow – but going with the flow is racism.”

“You do this work thinking ‘surely. . . someone will listen’. But there’s still the excuses — we don’t have the resources, we can’t build our Māori workforce because we don’t have enough Māori nurses, we can’t teach them in a culturally safe way because there aren’t enough Māori lecturers.”

It can’t be all on Māori shoulders. Tauiwi — non-Māori — nurses and leaders need to be allies, they need to be doing health equity, decolonisation, anti-racism and cultural safety “every day”, says Kidd. “Allyship is being strong and asking people to explain their assumptions so that they can be unpacked. Being clear about where you stand in your own privilege.”

No way out

Kidd had successful surgery on her primary tumour and had tested clear for any remaining cancerous cells. It was a shock when a precautionary follow-up scan a few months later found the cancer was not only back, but had spread to her lungs. “I have a terminal diagnosis. There is no way out. But it’s not immediate – I have at least a couple of years, maybe a little longer.”

Her work on anti-racism and Māori cancer equity continues and is “really meaningful” as her focus now turns to legacy-building.

“The health sector chops you into mental, physical and sometimes behavioural - never spiritual and never whānau – and then you have to choose which bit of you is unwell in order to go see somebody who doesn’t care about the rest of you.”

Kidd also supports several amazing Māori post-graduate nursing students at AUT. “Just by standing there, I create space for Māori students. I try and create safe spaces, and advocate for them.”

Kidd has a message for non-Māori nurses too — be kind, welcome whānau into the patient space and “pay attention to the kids!” Māori often avoid seeking care as they fear they and their whānau will not be welcomed in a culturally safe way. “For Māori, whānau are the treatment”, says Kidd.

“If you embrace the whānau your workload goes down; you’re not pushing your way uphill. You’re working with the people who are most invested in making things work.”

Dr Jacquie Kidd. Photo credit: John Cowpland, alphapix.