SICK TO DEATH

Wiki Mulholland’s demeanour doesn’t crack to reveal the fear until she starts talking about the nurse who took her aside and explained she could die.

“She said, ‘I just wanted to let you guys know that it’s not going to be good news. I think you’ve probably got cancer,” Mulholland says. She pinches the bridge of her nose and goes quiet as her eyes glaze over with tears. “Sorry,” she whispers.

Mulholland was 40 and a mother of three. She’d found a lump in her breast and gone for a mammogram. Within days she was asked to return for more tests.

She was scared and unexpectedly alone – her husband was told to remain in the waiting area. “I would have appreciated being able to have Malcolm in the room … He was put in a totally different part of the building to me. He wasn’t even allowed in the area where you get ready.”

Two male doctors and a group of trainees were in the room as Mulholland underwent a painful biopsy. “While I was going through that, the doctor was making jokes with one of the other people in there. It was one of the most scariest times of my life. I didn’t think it was very funny some of the stuff they were talking about. I had a lady nurse person in there with me, she was fantastic. I felt that she was trying to protect my dignity. She would make sure I was covered up and things were okay by me. Whereas I didn’t think the guys were doing that terribly well … I guess because there’s shame about not being dressed as well, I didn’t really want to have chats when you’re showing your goods off to everybody.”

After the biopsy the nurse, whose children went to the same school as the Mulhollands’, took them aside and told them to prepare themselves for bad news.

Cancer was always going to be a difficult diagnosis to be confronted with, but as a Māori woman Mulholland knew it was worse news for her than others. Māori women with stage four breast cancer have a 5 percent chance of living for more than five years, while Pākehā women with the same diagnosis have a 15 percent chance.

“Māori women are in a worse position. Māori women are dying sooner than everybody else. There’s no hiding from that when you’re in it – you know that’s happening,” says Mulholland.

“But I don’t think there’s a next-level conversation about why. Why is that happening and how are we going to address that?”

The conversation would need to go beyond just breast cancer to take in the disease in all its forms. Māori adults are more than 1.5 times more likely to die from cancer than non-Māori, the Ministry of Health says.

It’s not just cancer: Māori have worse health outcomes for all sorts of disease. Māori adults with diabetes are more than five times as likely to suffer renal failure and more than three times as likely as non-Māori diabetics to need a lower limb amputated. Māori aged over 35 are twice as likely to die from heart failure as non-Māori. Māori aged over 45 are more than three times as likely to die from chronic obstructive pulmonary disease. And on and on it goes.

Why? Discussion often centres around poverty, lifestyle and late detection, but a 2012 study by The University of Edinburgh and the University of Otago took these patient factors into account and found Māori were still more likely to die from cancer than non-Māori. It concluded questions needed to be asked about how New Zealand’s healthcare system disadvantaged Māori patients.

It wasn’t a new idea – plenty of research has suggested Māori patients aren’t served as well by our health system as non-Māori – and there has been official acknowledgement of the need for change. Since 2000, the Public Health and Disability Act has ensured one of the purposes of the public health system is to improve outcomes for Māori. But successive governments have failed to end the large disparities.

Why does our health system continue to fail Māori ?

AUT Māori health lecturer Dr Heather Came has worked as a medical practitioner, including in cervical screening, and her doctoral research focused on institutional racism in health. She says often people don’t understand institutional racism and how it manifests in areas like healthcare.

It’s not, she emphasises, about individuals being personally racist. “In my line of work I’m not in the habit of calling people racist. I’m talking about how systems produce inequitable outcomes for Māori ... Institutional racism is about a pattern of differential access to goods and services and power. It’s a pattern of behaviour. You can look at one thing and go, yeah, that might be racism. But it’s when you stitch it together with all the other things is when you can see it.

“Yes, there are racist incidents that are stand-alone. But it’s about the pattern … I think the biggest example of racism in the health system is the inequitable outcomes.” She says the health sector, including politicians at the top, often put political calculations ahead of the health needs of Māori. “I think they’re thinking about the political consequences versus what the evidence says needs to be done.

“Crown officials don’t want to admit they’re overseeing a racist system that’s perpetuating inequality. That denial isn’t helping us. That denial is, literally, costing people their lives. One of the core ethical principles in the health sector is: do no harm. Right now there’s racism going on in the health system amongst the policy makers, amongst the funders, amongst the practitioners, amongst those contracting – at all levels there’s racism going on and Māori will be experiencing that harm.

“On the flip side, Pākehā are experiencing a health system that is set up and oriented to our needs. I don’t deserve better health care than my mates.”

Came is talking personally now; she recently finished treatment for breast cancer. Her academic background meant her mind whirred, analysing her treatment as she experienced it, and she decided a raft of moments that would have made her, a Pākehā patient, feel uncomfortable would be outright traumatic for a Māori or Polynesian person. She says medical staff frequently failed to introduce themselves – unheard of in te ao Māori – and were casual about nudity – Māori women often feel strongly about modesty.

During one stay in hospital, Came, sitting on the edge of her bed, took matters into her own hands and initiated pleasantries during a doctor's ward round. “They don’t introduce themselves, there’s 16 of them. And so I put my hand out and I say ‘hello’ and shake hands with people. [It was obvious they found it] very odd what I’m doing, trying to meet these people. And then they ask me to take my clothes off again. Someone pulled the curtain across so only half of them got to see my half-naked body.

“At that moment I thought about older Māori women, older Pacific women. Yeah, nah, this isn’t working. And if it isn’t working for me, how is it going to work for those other people? Why would you want to go into a place where it’s so rough as guts? It’s just those gross insensitivities.”

It’s much bigger than the individual, objectionable moments, she says; there are serious problems coming from the top where policy-makers ignore research into Māori health.

“The Primary Health Care Strategy – the key document in the context of primary health care – there’s no Māori academics cited at all in that document … Then they wonder why the primary health care system hasn’t been delivering the outcomes we would expect for Māori health.

“There’s mentions of Māori, but they’re described as ‘hard to reach’. Hard to reach by whom? They don’t say the health system is failing to engage with Māori. They say that Māori are ‘hard to reach’. They don’t say, ‘there’s racism in the health system and it’s part of this problem’.

“We’re writing a paper at the moment about how 10 years’ of public health policy talks about Māori health. The main way they talk about it is absolute silence; not saying anything at all.”

Talk to Dr Donna Cormack, senior research fellow in the department of health at the University of Otago, and she’ll tell you racism has been running through New Zealand health care since the 19th century. “Māori health was talked about during that period of Māori as a dying race. It’s different terminology because time has passed, but the fundamental narrative is that it’s something to do with Māori deficit – it’s either biological inferiority or it’s cultural deficit, or individual behaviour deficit, or poor lifestyle choices. Those narratives are longstanding, they’re highly racialised.

“Those stories of Māori health that have been told about Māori – not by Māori – by doctors and scientists have some really persistent narratives that have lasted over time. Until we unpick those and understand the racist nature of those narratives it will make it difficult to address some of the inequities we have now.”

Cormack says the myths and prejudices have created an apathy and indifference, in the health sector and wider society, to the ongoing health disparities between Māori and non-Māori. “We talk about the inequity and we talk about it in a way that it’s almost naturalised and normal and we seem to not be outraged.”

She still sees scientific journals shot through with racist assumptions, she says. “In New Zealand we have this really strong idea – completely not based on research – of Māori non-compliance. It’s this idea that Māori are less likely to take their medication or turn up to treatment. We don’t have research that shows Māori are less compliant. We do have research that shows Māori get lower quality of care, that Māori tend to have to wait longer for treatment and Māori are not always offered the same treatment as other people.”

Research on ethnicity and the management of colon cancer in New Zealand, by the American Cancer Society journal Cancer, found that Māori with colon cancer were less likely to receive chemotherapy and experienced a lower quality of care compared with non-Māori patients.

The paper says: “There is no single point in the management process at which Māori patients suddenly experience less care; rather, the impression is one of a slight disadvantage at each step, leading (finally) to Māori patients being half as likely as non-Māori to receive chemotherapy within eight weeks of surgery for stage III disease.”

University of Auckland research found that Māori women are less likely to receive pain relief during labour and childbirth than Pākehā women, and Pākehā doctors spend 17 percent less time (two minutes out of a 12-minute consultation) interviewing Māori patients than those from other ethnic groups.

Despite such damning evidence, Cormack says the status quo survives. “The health system has this lack of willingness to look at itself and how racism might be playing out through the health system.”

Jean Te Huia is a veteran midwife who manages Choices: Kahungunu Health in Hastings. She says she gets frustrated when her advice to bureaucrats, based on more than 30 years’ experience, is ignored. “The evidence is there and yet it’s just not valued and not listened to.”

“Quite often over the years I’ve attended many of these meetings and you go and give your two cents’ worth and literally get ignored. It’s almost like a tick-box mentality. You’ll get a list of all the people involved with the discussion and you get a report at the end of it and your name is part of the report. But nothing you’ve said has been mentioned in any of the report.”

The result? Policies put together by bureaucrats who have no understanding of the people behind the numbers, she says. “They should stop believing they can plan health services for people they know nothing about. They can’t contemplate what their lives are like.”

Mention the issue of funding and she sighs and gives a wry smile. There’s inconsistency with the way Māori health providers are contracted and monitored compared to the way district health boards (DHBs) are, and DHBs hoover up most of the money that is supposed to be spent on Māori health, she says. Māori providers receive less than 2 percent of the health budget.

“The difficulty is that when you’re working with a government agency such as a DHB or a PHO [primary health organisation] there’s no longevity in anything you’re trying to do. Even when things work really well and you can see the progress being made, there is no sustainable funding that maintains the contract or keeps that going, even though it is living proof that it meets the needs of Māori. How then do you continue to provide a service when it’s not funded or there’s no ongoing support?”

“As a Māori provider you’re over-reviewed, you’re over-audited. We’re reviewed every quarter. The number of this, the number of that, the number of visits, the number of times the cat walked past the kitchen.”

But she says the scrutiny doesn’t cut the other way. Why aren’t DHBs being drilled over Māori health outcomes? “Any statistic – things like breast cancer, cervical cancer, survival rates [for Māori] – the DHBs never seem to be held to account for those disparities. Why not?

“If we looked at things that didn’t work for Māori and stopped funding those things, wouldn’t that make a huge difference? Instead of throwing more money at it, dissect it out and say, actually that doesn’t work for them, let’s stop throwing millions of dollars at it. I don’t think anyone has ever done that. That would be too obvious.”

Came remembers that when she was doing her doctoral research she was told by a senior Crown official that “their organisation did not currently have the capacity to review the whole range of service delivery to Māori”.

Health Minister Dr David Clark doesn’t try to put a positive spin on the situation; he acknowledges that the health system has been failing Māori for years. “There is no question that our public health service can and must do better for Māori. We’ve known for decades that Māori have lower life expectancy and suffer higher rates of preventable diseases. And we know that Māori, and other disadvantaged groups, do not always get the same access to treatment as Pākehā. That’s wrong and something we should never tolerate.

“Māori today are living with the consequences of years of disadvantage. Like all societies, in New Zealand we still see prejudice, unconscious bias and racism – we need to challenge that wherever we see it, including in health.”

In a letter to district health boards, Clark laid out his expectations for 2019 and 2020, and included this on Māori health: “As you consider equity within your district, there needs to be an explicit focus on achieving equity for Māori across their life course. Māori-Crown relations is a priority for this Government and I expect your DHB to meet your Treaty of Waitangi obligations as specified in the New Zealand Public Health and Disability Act 2000. I am expecting you to report on progress with how you are meeting these obligations as part of your Annual Plan reporting.”

Clark says DHBs need to be held more accountable. “The whole health service needs to lift its game – which is why equity is also a key focus of the Health and Disability System Review due to report to me next year.”

He also says Maori health providers may end up with a greater share of the health budget. “There is definitely room for increased delivery of quality health services by Māori providers. As capacity in the sector grows I expect to see Māori health organisations providing more and more services over time.

“While I welcome that, the wider health sector cannot just leave it to Māori providers to do the heavy lifting on improving outcomes. Many Māori will continue to access mainstream health services and those services need to do a better job for disadvantaged groups.”

But, for all his intentions, Clark warns there’s no quick fix for improving Māori health. “Turning around decades of inequity will not happen overnight, but by making it a key expectation of DHBs I believe we will see the health service respond with a greater focus on Māori health.”

In the initial stages of Wiki Mulholland’s treatment, she was told what treatment she would receive. “They didn’t even have a conversation about options. It was, ‘You will take this. This is what you will be given.’ So at that initial consult I trusted them as medical professionals to be giving me the right advice.”

“Everything was tracking as it should be. Then I said to the nurse that I’d been having pain in my upper back which had been there for a couple of months. She mentioned it to the surgeon and the surgeon said, ‘You’re going to have to go and get an MRI on your back.’

She had the scan and received bad news.

“The surgeon came in and said, ‘It’s no good, we’re not going to be able to operate on you. Surgery is off the table. You’ve got stage 4 cancer and it’s spread.’ He said, ‘I’m sorry about that,’ and walked out.”

Mulholland and her husband were distraught. The way the surgeon delivered the news, they thought the diagnosis was a death sentence. And he’d vanished so there was no chance to ask questions. “The surgeon didn’t see it as his problem. I wasn’t his problem. He couldn’t help me so he wasn’t required. I felt like he said, ‘I can’t help,’ and then he was off to do something else.”

Desperate, the Mulhollands began researching treatment options and found that other medications were available – ones the medical professionals she’d seen had never discussed with her.

One was Ibrance, a new drug that isn’t funded by Pharmac and costs $7000 a month. “Since that time I’ve had interaction with other ladies who have stage four cancer and some of them are having Ibrance as first-line treatment. So it’s only just starting to come into my thinking: maybe I should have been offered Ibrance as first-line treatment. And why wasn’t I offered Ibrance as first-line treatment?”

Did medical professionals make an assumption that Mulholland wouldn’t be able to afford, or raise the funds, for Ibrance? Did clinicians not spend enough time with her to explain all the options? It’s impossible to say for sure, but the research indicates her ethnicity may well have come into play.

If Māori patients and health professionals feel like they’ve been silenced or ignored for years, then a recent Waitangi Tribunal hearing gave them a megaphone to voice that frustration.

The Tribunal’s resulting report was damning. Not only did it describe the inadequacy of government legislation and policies, it also lamented the fact that many of them weren’t even adhered to: “The prejudice suffered by Māori because of these Crown failures is extensive. The legislative and policy framework is insufficient in and of itself … However, we are particularly concerned that the evidence before us indicates that some of the framework’s provisions, intended to improve Māori health outcomes and give them input into how primary health care is designed and delivered, were not fully implemented, or in some cases ceased to operate entirely. This is unacceptable. We reiterate that the depth of inequity suffered by Māori, and particularly the fact that it has not measurably improved in the two decades since the framework was put in place, mean that the Crown’s failures are very serious.”

The report highlighted how the structure of funding for Māori health providers isn't just affecting patients – it also means staff are paid less than those with the same qualifications in the mainstream system and are under constant pressure because of the high demands. While many want to serve their people, there is often a high turnover and they are forced to supplement their income. Even then they still struggle.

Kerri Nuku, kaiwhakahaere of the New Zealand Nurses Organisation, told the inquiry: “They go to work and work an eight-hour day and they go and pack the supermarket shelves at night to make up for their wages that they don’t have enough of. With the increasing cost of living they’re unable to meet those needs. For nurses that voluntarily now are sleeping in the backs of cars it’s because they can’t afford the rent; that’s a reality.”

Reporter Aaron Smale

Photographer Aaron Smale

Editor Veronica Schmidt

Sub editor Mark Broatch

Graphic design & data visuals Scott Austin

Art director Luke McPake

Developer Van Veñegas

Additional photography Diego Opatowski, Richard Tindiller

Made possible by the RNZ/NZ On Air Innovation Fund