Tui MacDonald with her mokopuna. (Photo supplied)

The statistics of poor health and lower life expectancy for Māori are all too real for whānau who’ve suffered the loss of their loved ones years before their time.

In this piece, Tui MacDonald writes about her own whānau’s experience — and why the abolition of Te Aka Whai Ora (the Māori Health Authority) cuts so deeply.

 

It was July 4, in the early 2000s, and I was lying in a hospital bed in a four-room cubicle at Wellington Hospital. I was 46, and I’d just been told that I’d had a heart attack. It was a surreal feeling.

Two days before, I’d been sitting at my desk at the Ministry for Women, eating a muffin as a colleague told me a long, slightly off-colour joke. Suddenly, a strange sensation started working its way up my left arm and into my cheek. I felt overheated, nauseous and dizzy.

I interrupted my colleague just before the punchline, told her I was feeling a bit off, and then dashed to the wharepaku where I removed my thermal top, wondering why the aircon was so hot.

When I got back to my desk, I heard the punchline (something about Lady Chatterley) and found I’d lost all interest in my muffin. Still feeling māuiui (ill), I wondered if it was the stuffy office, the bad joke, unhealthy lunch choices, or even the tight thermal. Or maybe it was the combined stresses of my policy analyst job, single parenting two boys, and being a “mature” law student.

My manager called a taxi and sent me home. She could see something was up with me. I promised I’d get to my GP but, when I got home, it seemed like the worst had passed. Feeling completely drained, I went straight to bed and slept for hours. I have no recollection of how my then nine-year-old son got himself to school the next day.

I woke to an email from my manager asking me how the GP appointment had gone. After her prompting, for which I’m forever grateful, I went to Newtown Union Health where I was told that a blood test showed I’d probably had a heart attack and should go straight to the emergency department at the hospital.

Wellington Hospital wasn’t far. I had more tests and was told: Yes, you’ve had a heart attack, and you need to be admitted now and have a procedure ASAP.

I spent the weekend in hospital because I had to wait till Monday for a stent to be inserted into an artery. I was by far the youngest in the four-bed cubicle and had 48 hours to reflect on what had happened, and what was about to happen.

I asked to be moved because it was noisy and I couldn’t sleep. A lovely Pasifika woman had a bunch of whānau around her bed most of the weekend. I was a bit envious but glad the system was okay about this for her. I didn’t have a cellphone then, and the suddenness of my transition from public servant to heart patient meant that I wasn’t able to let many whānau or friends know about my situation.

Fortunately, I was able to contact my brother who was boarding in the old nurses’ home nearby. He tried to make a collect toll call to our whānau in Blenheim, from the public phone in the ward. But whoever answered didn’t recognise the number or know who was calling, and wouldn’t accept the charges. I sank deeper into my uncomfortable hospital bed, full of self-pity.

The next day, I was moved into a two-bed room with an older male heart patient who was also waiting for an angioplasty, a procedure in which a narrow metal tube is inserted into a coronary artery to help keep it open.

That weekend was scary and strange. I’d often visited sick whānau in hospital, but this was my first time being the patient. I kept replaying everything endlessly in my head. I worried about who’d look after my two boys if the procedure went wrong.

I had already lost both my parents — both of them from heart attacks. Dad at 60, and then Mum at 67. But a heart attack at 46? Did I really have to be an early adopter of heart disease?

Tui’s parents Rose and Hugh MacDonald  were hard workers who “probably wore themselves out by their 50s”.  The photo was taken the year before Hugh’s death at 60 from a heart attack. Rose died five years after him, at 67. (Photo supplied)

I trawled back through my lifestyle choices trying to make sense of it all. I’d been a social smoker in my younger days. Limited recreational drug use. Not much of a drinker after seeing the harms it causes. A sweet tooth, yes, guilty. And a bit sedentary after a sporty athletic start in life. A gym-joiner, but not so much a gym-goer.

I concluded that my lifestyle was definitely healthier than that of my parents. I remembered that when I was growing up most whānau of my parents’ generation seemed to smoke and drink alcohol. The harms weren’t fully recognised back then, so there was no support for dealing with those habits.

My parents had been hard workers. Dad was a tradie and Mum took on whatever part-time work she could find as soon as my four siblings and I were all in school. They even took on a weekend cleaning contract at a local hall which was more trouble than it was worth. They probably wore themselves out by their 50s.

That’s when Dad’s heart started causing him problems — and when my siblings and I started getting the phone calls to rush back home because he was in hospital after a stroke or heart attack. When my first baby was born, Mum couldn’t be with us in Auckland because Dad had had yet another near-death episode. As soon as I could, the baby and I flew south to Blenheim. Mum didn’t drive, so they needed someone to get him to appointments and do the shopping.

Dad couldn’t enjoy his new moko. And that moko only had his koro around for another two years.

The day Dad turned 60, he wasn’t in good shape, so we just had a quiet birthday dinner at home. I got the feeling he wanted a bit more fuss made so I made a mental note that, for his next birthday, we’d organise something fancier. We never had the flash celebration. Nine months later, he died of a heart attack in his sleep. And my siblings and I, in our 20s and 30s, were organising a tangi.

Mum was a widow for five years and then she suddenly passed from an undiagnosed heart condition. Mum was born and bred in Scotland and has a sister there who’s now in her 90s. I sometimes puzzle over why Mum passed in her 60s. Shouldn’t her British ancestry have provided some immunity from not reaching her expected life span? Did she “catch” negative Māori health outcomes from marrying into a Māori whānau who didn’t make old bones? Was she worn out from the stresses and strains of surviving all that her life became — all the caring for others?

When my sister Poppy was still in her 30s, she started needing treatment for heart and lung problems. She’d suffered from childhood asthma, as I had, but hers had been more severe and was hospitalised several times for bronchitis and pneumonia. Later, she learned that those episodes had left scarring on her lungs.

She saw doctors, including a specialist at Wellington Hospital, who told her she might need a lung transplant in the future, but in the meantime she’d be fine just with portable oxygen at home. The specialist’s approach was: “We’ll monitor you, and in the meantime, try and lose some weight.”

After a few years of struggling to breathe, Poppy was told she needed to go urgently to Greenlane Hospital and be assessed for a transplant. Sadly, she’d become depressed about her situation and had also developed diabetes. She was turned down for the transplant waiting list because the Greenlane team said she now had too many co-morbidities and wasn’t a good candidate for a transplant.

Their advice was to go back to Blenheim, check into a rest home, stay nice and warm, and then eventually go into hospice care. She followed the advice, hated every minute of being a 40-something living in a rest home, and became even more depressed. About a year later, she was gone at the age of 49.

We took her from the hospital to lie at our whānau home before going out to the marae. On the first night of her tangi, an uncle and aunty of our parents’ generation came to the house. “We thought we’d better come over in case you fullas didn’t have any old people with you,” said my uncle Mugwi. How right he was, and how we appreciated the tautoko.

Poppy was a music-loving teen. She suffered from childhood asthma, was hospitalised for bronchitis and pneumonia, and spent time in a health camp as a child.  She died at 49. (Photo supplied)

Our generation was now the old people, and we didn’t feel ready. We’d lost not only our parents, but also some of our close uncles and aunties. And we didn’t have grandparents on our dad’s side when we were growing up. We no longer had the korowai of protection from the generation above us. Their loss meant that we, and the generations that have come after us, have missed out on their guidance, wisdom and leadership.

Sadly, our whānau’s experience isn’t unusual. This is what the statistics of lower life expectancy for Māori look like for too many of us.

I know other whānau who’ve had similar experiences to ours with cancer and other chronic health conditions claiming lives prematurely. We start losing our loved ones earlier than our tangata Tiriti peers. We go to more tangi. We are less likely to experience being the “sandwich generation” who raise their own children and moko while also caring for elderly parents.

So when Te Aka Whai Ora (the Māori Health Authority) was set up in 2022, I, like many other Māori, was optimistic that it would make a meaningful difference to Māori health outcomes. I hoped that whānau would start to receive more prompt diagnoses and get offered the treatment options that could potentially see us living healthier, longer lives. Long enough to see our moko grow up.

Tui’s dad Hugh (far right) and uncles Pirimoana, Eugene and Adrian. Two of the brothers died in their 60s and two in their 40s. Another had died in his 30s, in an accident. (Photo supplied)

My own experience after my heart attack had been positive. I’d received an immediate intervention and follow-up treatment. I was living in the capital city then, and I assumed that was why I didn’t have to go on a waiting list.

But my father and sister living in small-town Aotearoa had different experiences. Neither of them received any surgical interventions or treatments that might’ve helped them extend their lives. I still believe it was the specialist’s delay in referring my sister to Greenlane that shortened her life — and left her only son without his mother.

I’m still seeing posts on social media inviting me to sign a petition to disrupt the abolition of Te Aka Whai Ora. I signed it, but, of course, it’s too late now. The coalition government said they campaigned on it, the voters elected them, and so it had to go. So too with the smokefree legislation, even though it hadn’t been part of anyone’s election campaign and polls show most New Zealanders supported its aims.

The anger and disappointment about Te Aka Whai Ora cuts deeply for many of us. It wasn’t even a year old when National and Act were campaigning to kill it off.

Maybe in years to come, historians and researchers will discover the petition in the archives and think what a pity and what a missed opportunity.

Te Aka Whai Ora could have been a game-changer for Māori lives. But it was never even given a fighting chance to make a difference. Just like our whānau who keep dying before their time.

 

Tui MacDonald (Ngāti Kuia, Rangitane o Wairau, Ngāti Apa Ki te Rā Tō, Ngāti Koata, Ngāi Tahu) was born and raised in Blenheim and now lives between the Kapiti coast and Te Tau Ihu. She has worked in the public sector in policy, legal and research roles. She has two sons and three mokopuna.

© E-Tangata, 2024

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