A woman walks to the beach at sunset. Photo: Getty Images.
Sometimes death comes for the old, and sometimes for the young. And sadly, like life, it rarely makes much sense when it does come.
It was 8.45 am and my phone was vibrating. Ella’s name flashed on the screen.
The call was probably a mistake, an accidental pocket-dial, I thought. We usually text each other and she would be at work by now. Why would she be ringing?
“Hello?” I said.
“Hi. I have some bad news,” she said.
Not in a light-hearted I have some good news and I have some bad news kind of way, but I have bad news, and are you sitting down?
“Jenn died in the weekend. I’m so sorry to tell you this.”
“What?”
I had heard Ella correctly, but I couldn’t connect the words in my brain. Ella, a friend of two decades, gently explained everything she knew, allowing me the grace to stay silent.
Jenn, my childhood friend, was five days older than me. She was 32.
It didn’t make sense. We were supposed to die when our hair was white and our bones tired, aged prunes, wrinkled and full of history, with thin, papery skin. After a good innings, so they say. This, I knew, to be an unspoken rule of death.
Your thirties are for living and loving, playing and learning, and earning, and travelling, or raising a family, or whatever you like, but they are for living. Not for dying.
I thanked Ella for ringing, for making an uncomfortable phone call. Then I hung up.
For a few minutes I stared at the scratched black mobile in my hand, the bearer of bad news, before placing it softly on the coffee table, scared it might ring again.
Unsure what to do, I slipped on some socks, laced up my shoes and headed out into the cool air for a run. I ran alongside a stream and through a park where trees were dropping orange and red leaves in the breeze. I played a podcast so I didn’t have to be alone with my thoughts.
I had known Jenn since I was a child. From the late nineties and into the 2000s we spent our free time hanging out, swimming, having sleepovers, making amateur horror movies, and skipping school together. Jenn, I thought, was brave and edgy. But she was kind, too. Her hugs were tight and she adored animals. She liked to put on silly voices and tell me funny stories, and we would laugh until we choked on air. We talked about when we would start shaving our legs (her before me), and rock music, and boys we liked.
One day, guided by youthful, foolish bravery, I decided to ask my crush out on a date and Jenn and our other best mate, Megan were by my side as I tracked his name down in the phone book and nervously tapped the number into the landline phone.
As I hung up the phone Jenn and Megan looked at me.
“What did he say?” they asked eagerly.
“He said ‘no’.” I replied.
Jenn was there, through it all. Through those bumbling, funny, years when our bodies were sprouting and stretching, and our hormones were busy being radicalised. When everything was so intense and so now because that’s the way it is when you’re young and dumb and you can’t comprehend the incredible gift that is having your whole life ahead of you.
But somewhere in there, amongst all the angst and mayhem, bad haircuts, and late night gossip sessions, Jenn grew sick. She became secretive and guarded about food. I told a teacher, and later a school counsellor that I was worried, something wasn’t right. They told me they would take care of it.
At 13 Jenn was hospitalised with anorexia nervosa. I arrived at her hospital bed with cards and gifts and a deep uncertainty of what all of this meant. At 13 you don’t really understand how the future might unfold.
Jenn would suffer from eating disorders for much of her life, an illness that I thought was like a carnivorous vine growing in her mind. I didn’t know how to reconcile my friend – who I knew to be creative, sparky, and intelligent – with the vine.
I hated how the vine hurt Jenn. And I hated that I couldn’t fix it.
After my run, I tracked down a phone number for Jenn’s dad and sent him a message, explaining who I was and asking if I might attend the funeral. I was nervous about intruding on a family’s grief.
I don’t remember with certainty when I last saw Jenn. I think we were near our mid twenties. Jenn had been admitted to a facility about five hours from our hometown near where I was now living. I remember walking through the gardens with her and talking. Her body had changed shape over the years, and at this time was lined with soft down-like fluff.
Jenn’s dad replied to my text: of course we know who you are. We would love you to come.
As a child Jenn’s family took me to their little bach at a beautiful nearby bay. No road access, no electricity, just the ocean and ourselves. My family didn’t have much money so it made me feel special to be invited, to ride on the boat and stay for the weekend. At night Jenn and I swam with phosphorescence, just us and a thousand million dancing lights.
It was magic like no other.
Like Jenn, I was deeply uncomfortable in my body, my skin was riddled with acne, and my hair was a frizzy embarrassment.
But Jenn, a talented artist, would present me with sketches of myself – cartoon, colour, black and white, lifelike – each time giving me a version of myself that I could believe in, that I felt proud of. I adored Jenn. She had been my best mate.
So why hadn’t I picked up the phone?
Why hadn’t I stayed in touch?
Where was I during Jenn’s hardest, darkest times?
I pulled a bag of salad out of the fridge and started to fill a bowl with green leaves. My phone vibrated. It was Jenn’s dad again: you were very important to Jenn back then.
The text tipped me over. I let the salad bag go and sank to the floor, green leaves sprinkling onto the white speckled bench-top. I clenched my fists. A peculiar sound, a shout, a cry, made its way out of my abdomen, through my throat and into the air in front of me.
I rested my head against the wall and cried sad, pathetic sobs.
I was angry. I was angry at myself for not getting in contact with Jenn. I was angry at Jenn for dying. And at the world for letting it happen.
I was angry that the unspoken rules of death could be broken.
Getty Images.
Ella and I both went to the funeral. She flew. I drove. In our confusion we didn’t think to coordinate. The drive was long and winding, over passes, into valleys, and through forests where the snow had settled on the branches of trees.
I’d misjudged my timing and with two hours drive-time still to go I panicked that I was going to be late to the funeral. I didn’t have time for my original plan – to detour to my sister’s house to change my clothes – so I stopped on the main road at a popular cafe.
I ordered a toasted sandwich then ducked into the bathrooms. I slipped off my track pants but caught a foot in a pant leg and bounced about, banging my arms against the cubicle walls as I tried to free my trapped foot.
I looked at myself in the mirror. Age, I realised, was beginning to settle itself into my face. So why didn’t I have it together more? How had I let my messy, disorganised manner follow me from childhood into adulthood?
Ten minutes later, keys in one hand, toasted sandwich in the other, I climbed back into my car.
Melted cheese was oozing out of my sandwich so I laid an old t-shirt on my lap to catch the drips. I didn’t want greasy cheese stains on my designated funeral pants.
For all my teenage years I was, for no good reason, desperate to leave the town I was about to drive into. I knew the world was bigger and badder, and I wanted to see it all. Only with age and hindsight, can I acknowledge the small beachside town where I grew up for what it really is: sunny, safe, and beautiful.
I’ve returned home over the years, but this time was different. I was swamped with memories. This place, these people, had shaped my formative years. Despite all the time away, my identity was etched out here, whether I liked it or not. And Jenn was a significant part of that.
I met Ella outside a serene Japanese garden, a place we had all played together as children, and hung out together as teenagers. It was an eight minute walk to the chapel.
I had one napkin, which I’d kept from the cafe. Ella handed me a crumpled soft tissue, insisting earnestly it was clean. I thought Ella was just the kindest human at that moment. People were standing around outside the chapel. Inside, music was playing from a laptop and photos of Jenn and her artwork dotted the walls and tables.
High school friends I hadn’t seen in years attempted conversation with me. I didn’t make it easy for anyone, it was a pained, staccato performance.
“Do you have kids?”
“No.”
“Probably a good thing, they’re a handful you know!”
All I could do was smile politely. I was jittery and scared my voice would crack. I turned my eyes up to the ceiling. Hold it together, hold it together.
“When did you last see Jenn?” someone asked me.
For years I wondered if I had been enough for Jenn. If I could have been a better friend. If I should have spoken to another teacher, another counsellor, said something sooner. I’ve stewed over all of the haves – should have, would have, could have.
But when death arrives everything is too late. Time is locked into place and no more can happen, no phone calls, no second chances.
By our late teens Jenn and I had drifted along different paths. Jenn attended school infrequently and in my final year I dropped out in search of a bigger, badder world.
I was scared of someone asking me, where have you been all these years?
Getty Images.
The eulogies were honest and tender. Ella and I cried silently, and laughed at funny stories a little too loudly. Jenn was wild, beautiful, and kind. Everyone agreed she had a rough road in life, but boy, did she have soul.
In an ode to Jenn’s creative flair, her coffin was covered in pictures, drawings and messages from loved ones.
We were all invited to get up and write our own message with black marker pen. A woman stood up, tripped and nearly smacked into Jenn’s coffin. I chuckled quietly – I like to think Jenn would have laughed too.
This is the weird reality of death. It’s not glossy and smooth like the films tell us. Death, like life, is clumsy and unpolished. It’s blotchy red faces and trembling hands. It’s banging about in a toilet cubicle and catching cheese drips as you race to a funeral. It’s glancing skywards to fight back stupid tears that you don’t want to tumble down your face because you’re not sure you can catch them all.
Death, like life, hurts.
After the farewell we stepped outside the chapel and hovered about. The sun had slunk away and there was a chill in the air. We were all invited for drinks, food, and sharing of stories back at Jenn’s family home.
Stepping into the house, everything was how I remembered it – the curtains, the computer desk, the picture frames. Just without Jenn.
As I looked at all the faces in the crowded living room, I wondered if maybe Jenn was just in her bedroom, or in the bathroom, and she was about to pop out any moment now. Perhaps all of this was in fact just a terrible mistake, or a terrible joke.
I poured myself a wine to manage my nerves, grateful to have Ella by my side. A few months ago I had been sorting through old belongings, Marie Kondo-ing my life. I binned a bunch of video tapes. I figured I hadn’t watched them in 20 years, I didn’t have a video player, and even if I did, I wasn’t sure I wanted to watch the tapes. Dragging up history felt like work.
After Jenn died I went digging through my old boxes and found photos. But I’d binned our homemade horror films, along with sketches of me that Jenn had drawn.
As Jenn’s family and friends reminisced about those homemade movies, I couldn’t bring myself to admit that those childhood remnants were sitting in a dump somewhere. So, instead I passed around photos from high school.
There was Jenn, always posing or pouting or pranking the photo, and me, with my acne skin and unruly hair, giggling.
Lately, Jenn had been sharing photos on Facebook of her dog Batman, whom she adored, and her partner Brian, whom she loved. They were always at the beach. Jenn, Brian, Batman.
I’d not met Brian, but from the photos I was wary. He was older and looked rough and tough. But if I was suspicious, Brian was open and welcoming. He spoke kindly. He didn’t drink. He loved Jenn, even her darkness, he said.
I asked Brian if it would be okay if I gave him a hug. He said yes.
When the gathering began to wind down, and people trickled home, I thought about how Jenn’s family would be left with empty wine glasses and empty plates, but most of all the emptiness of their home.
I wanted to keep hugging Jenn’s parents, squeezing them. I wanted to tell them I’m sorry. To tell them I’d believed in the rules of death: that we don’t die before our parents. I wanted to tell them how much Jenn meant to me. And that they had raised a kind and loving daughter.
But my words came out clumsy and awkward.
Jenn’s dad told me that Jenn’s last year was her happiest in a long time. I think we all found solace in this. After I dropped Ella off I drove to my sister’s house and tried to make sense of the day, the week, my childhood, my youth.
Friends wanted to ring me. But I couldn’t talk about Jenn.
I felt like I didn’t have a right to grieve or feel the way I felt. How could someone who I hadn’t seen in years have left such an imprint on my life?
Unsure what to do, I slipped on some socks, laced up my shoes and went walking.
Nearby is a beautiful coastal walk that takes five days. I meandered along the beaches, through forest, and across the bay where Jenn’s family has their bach – complete with electricity now.
I thought about the night with the phosphorescence. I thought about all the memories, the giggling, the funny voices. I thought about how friendships can fade in and out.
Late one afternoon on the walk, just before the sun went down, I stripped off and went swimming. Maybe if I couldn’t walk away my guilt, I could wash it away.
Jenn had died unexpectedly in her sleep. I think deep down, part of me had been aware that she might die young. Her body had been under immense strain for a long time.
I know now that my rules of death are folly. Sometimes death comes looking for wrinkled prunes and a good innings. And other times it looks for someone else, someone younger, and it doesn’t make much sense.
I don’t have the sketches or home-made horror films anymore, just a youthful friendship – ripe with fun and silly jokes, tight hugs, and angst – perfectly locked in time.
Our health system is broken. It has betrayed its community rather than served it. And the solution lies with the voices of patients, writes Glenn Colquhoun, a New Zealand poet and doctor based on the Kāpiti coast.
When Māui first hauled up the North Island of New Zealand it was smooth. His brothers sat beside him and looked on. He had hidden himself in their waka earlier that morning because they had refused to take him fishing the day before. In lieu of bait he had punched himself in the face, then smeared the blood from his nose on a hook his grandmother had given him. After the fish had been landed, Māui returned to Hawaiki. He left the fish with his brothers and told them to leave it alone. Like all those who have been told to leave things alone, his brothers did not. They cut it up between them. They dug into the land. They slashed at it. They squabbled. The sections they divided into quarters they divided into quarters again. In time there was barely any part of the fish that wasn’t broken open or scarred.
You will have travelled Māui’s fish. You will have rounded its dips and curves, looked down on its gullies and fissures. According to some, these are the fault of faults, the result of the Pacific plate popping up the Australian plate as though they were in a scrum. But there is something in Māui’s explanation for our lacerated geography that hints at a deeper truth. We rarely seem to be able to leave things alone.
I work in a youth health service in Horowhenua. My room is yellow and pink. You can find it down the end of a long corridor in an old maternity hospital in Levin. A collection of superheroes stands on the book case: Batman, Spider-Man, Buzz Lightyear and Wonder Woman. They protect us, along with statues of Jesus and the Virgin Mary, and a science toy from the seventies called ‘The Visible Woman’. She is transparent, and the pathways of her arteries and veins curl up through her body like vines. Her palms face upwards, as do those of Jesus and the Blessed Virgin. They acquiesce. And implore.
There is a skeleton in one corner and an anatomical model in the other. My plinth is a carpenter’s workbench with a squab on top. The vice remains. In the prone position it is level with a patient’s arm and I often tell them that it is used to clamp them down when they recline. Scattered over the floor and on the couch are various plastic body parts, as well as a pair of false teeth. I am surprised how often someone feels the need to place them in their mouth. Tibetan prayer flags hang from the ceiling. We ask the gods for mercy and a stroke of luck.
It is a room designed for listening to stories. And it is full of them. They alight and anoint. They blurt and are tumbled out. They are painstakingly assembled over months. Many are never told. They are brought into the room. They look around. Then leave again. They are funny, joyful, ordinary. And they inform on the world of adults. So often they are jaw-dropping in their casual revelations. They are fresh wounds, as yellow and red as anything you will have seen in an operating theatre. They are the weight of anvils. Regardless, they seem to rise and hover. Like angels and demons.
I like to think we do good work in that room. We give young people time, that’s for sure. And at the end of the day that might be the most important thing of all. We write to them. We bake for them. We send them texts to see if they are okay. We help them with food and petrol. We even send them to dinner and the movies. Sometimes we go out and try to find them. We try to make connections and to hold on as best we can.
But sometimes I think we are like one of those lifeboats on the Titanic. From where we sit on the clear cold calm we can see the hulk of our country rising up. Its underbelly slick. Its rudder grasping uselessly for purchase as it is lifted into the sky. Over the years her passengers have swum to us and we have hauled them over the edge into the dry, wrapped them in blankets and left them to pant. But now we are full. And still hands reach up to the bulwarks. Inside the boat we look at each other and do nothing. We watch on. Sometimes we hit at their hands with our oars and hate them. We are broken now like everyone else.
Two years ago I sat on an expert advisory panel for the Ministry of Health. The conversation between the Ministry and the panel went something like this.
MOH: It’s so good to see you. We’ve been told you are great at what you do. And we’re very excited to hear what advice you have to give us today.
PANEL: Thank you. It’s nice to be here. Before we go any further, though, we’d like to say we’ve had a good look around. And we’ve checked out the house. And we reckon before you spend any more money on it you should take a look at the piles. They’re a bit of a mess. And it would be silly to throw good money after bad.
MOH: Fantastic. Fantastic. That’s great feedback. The thing is (lowering their voices), we’ve got a special on washhouses this year (nodding). The Minister is keen on washhouses. What do you think about that?
PANEL: Hmmm … washhouses? Who wouldn’t want a washhouse? It’s just that we really think you should take a look at the piles first, that’s all. They’re not in good shape.
MOH: Uh-huh, uh-huh, we hear you … soooo … we’ve gone away and crunched the numbers … and we’ve created a flow chart. (Copies are handed out.) If you follow the arrows they say GOOD THINGS are GOOD to do. How do you feel about that then? Pretty sharp, we’d say. The take-home message for us, though, is that you’re not against washhouses.
PANEL: Well … the flow chart is great. But it’s really just that we do think the piles are gone … and it’s really important that they be replaced soon, or the whole thing could come crashing down.
MOH: They told us you were sharp. I’ll make a note of that. Piles and piles and piles and piles of piles. Now then … how about those washhouses?
Gray Street does not stand out at first glance. It is a small-town street. There is a park on one corner, rugby posts, a basketball hoop. Houses of various sizes and shapes line its flanks. I think of them as yeomanry at camp, always on the edge of battle. I walk around the block there with a patient of mine sometimes. Paige has grown up on Gray Street, and this is one of the ways we talk, moving beside each other, the rhythm of our arms and legs levering our memories and thoughts. Our faces are parallel to each other, where they can be better hidden. Our conversations can be funny and tender, especially when we want to avoid the pain she deals with on a daily basis. They can be raw and painful when we don’t.
Photo:Getty
They are especially casual when she’s in a newsy mood. Then she talks about the neighbourhood. This is the house where the local drug dealer lives. She says it as though we are looking at the corner dairy. People are always stopping by. The dad in that house killed himself. This is where Horomona hung himself. I grew up with him, she says. And this is the section we played in when we were little. We made huts in the long grass. This is where Jacob lived. He hung himself on the way home from a party. His mum is my mum’s best friend. And here is where my friend Caroline’s mum was killed by her partner. Earlier in the year Paige performed CPR on her nephew who was fifteen months old. He was exposed to methamphetamine in utero and spent the first nine months of his life in Starship Hospital racking up heart surgeries, PEGs, MRIs and central lines as though they earned him frequent flyer miles. She has been trying to process the images of his loss over the last few months. What she processes beyond this is years of her own sexual abuse. By the time we get back to her house we have barely walked a kilometre.
Daniel came to see me because he couldn’t concentrate. He suffered a number of head injuries as a young man. To fit in with a group of other boys at a local school, he would regularly allow them to hit him in the head. On more than one occasion he lost consciousness. Things got so desperate for him he tried to kill himself. When I tracked down his notes I found that he was born prematurely at twenty-four weeks of gestation. He had undergone all the usual interventions this sort of history demands. What struck me as I read his file was the juxtaposition between the intensive care that our country had lavished on him in the first few years of his life and then its great absence during his adolescence when he became isolated enough to want to die, or to seek acceptance among his peers by being king-hit in the head by them for fun.
Simon was diagnosed with glomerulonephritis when he was eighteen months old. He has spent his life around hospitals and is currently on the waiting list for a renal transplant. I have lost count of the times he has run out of meds and stopped them. This prompts a flare in his symptoms and he eventually returns to hospital unwell. Our clinic has worked with him over a number of years, trying to maintain a connection. A few years ago things got so desperate he too tried to kill himself. He survived but moved out of the area. We send him texts now and then to say hello. But few are returned.
I have never really been a fighter-pilot sort of doctor. I like working down the end of a corridor, listening to stories. The consultation for me is a magical place to be. Human beings collide there, and small particles come into being for microseconds if you are quick enough to see them. It is a place of dreaming. And I like being left alone to get on with that sort of stuff.
But it is hard to ignore the rest of the world just beyond this corridor when I listen to stories like Paige’s or Daniel’s or Simon’s. When I reflect on them I see a gap opening up in my profession between the systems we have set up to care and the people who need those systems most. I ask myself how is it that we have created a health system that can spend hundreds of thousands of dollars on someone at one point of their life, only to lose connection with them when they are just as vulnerable to other demons? Demons that pose as real a threat to their existence as dodgy kidneys and prematurity.
For a time our service ran a clinic in each of the three high schools in Horowhenua. The doctor was employed by one organisation, the nurse by another, the youth worker by a third, and the school counsellor by another again. We ended up all doing pretty much the same thing, and spent a great deal of time simply chasing each other around. Some young people had multiple assessments. And many fell through the cracks. The turnover of GPs in Levin and Foxton over the last 15 years has been equally painful to watch. The larger medical practices have existed on the back of a revolving door of locum doctors. This has meant that connections with patients are constantly interrupted. Stories are held for a few months at a time and then passed on. Time constraints have come to dominate the length of consultations, so that what people really want or need to discuss gets left for another day that rarely arrives. Appointment waiting times can blow out to weeks. Patients are turned away because they cannot pay.
The craziness does not stop there. Within our community there are a number of NGOs that also secure contracts for offering healthcare services of some kind. Each sees a need, and feels they are best placed to answer that need. They convince the district health board and government ministries of this, and set up shop. My own service is one example. While these structures bring some remarkable services into the community and ensure that marginalised voices are heard, they also create a profusion of contracts that are constantly changing and that practitioners in each organisation struggle to keep up with. Each of these contracts also comes with stipulations that certain people can be seen for certain things for certain lengths of time. But human beings are always more than this, and don’t always fit into such categories, especially when they need to.
It has long been understood by primary care that the most difficult part of secondary care for patients to access is the mental health service. We have come to accept this part of our profession as the truculent black sheep of our family. But that contagion seems to have spread in the last three years to many other areas of secondary care. Gastroenterology, ENT, cardiology, orthopaedics, neurology, urology, dermatology, endocrinology – it makes no difference. These days I receive as many declined referrals as those that are accepted.
On top of that, I see many young people with chronic toothache and rotten teeth who find the walls erected by the dental service at our local hospital insurmountable. I often have to tell young people in chronic pain that the publicly funded dental clinic has refused to see them. This of course creates a mountain of phone calls to the hospital and letters to departments and the chasing up of patient information to the point where the most difficult part of the day is not seeing patients but negotiating a hydra-headed hospital preoccupied with its own roar. I rarely make a single phone call. I will usually be passed around three or four people (at least) before getting a clear answer to an enquiry.
Auckland Hospital and Starship Childrens Hospital (Photo: Phil Walter/Getty Images)
I am sometimes asked by consultants if any of our young people might be able to be seen in private. The answer is almost always no. Such a question seems to me an immediate admission that our health system is unequal – it is able to offer care only to people who can pay for it. There is, I think, always an inverse law operating between these two systems. The people who most need such help are usually least able to afford it. And the clinicians needed to work in the private sector are drawn out of public hospitals and so decrease their ability to respond to those without resources. Why is this situation so accepted?
I get it that patients are tricky. I get it that they run, shift, fill out the wrong piece of paper, get angry and walk out, run out of phone credit and get overwhelmed by the procedural merry-go-round that medicine throws at them. But they don’t just stop existing. They remain suffering in communities. By luck and resilience some do well. But many continue to hurt in a number of ways. And at times they pass that suffering on.
Over the last few years it has become difficult to ignore the conclusion that healthcare provision in New Zealand has become a threat in and of itself. The systems it employs discriminate and are unequal. It has become at once the whipping boy and gatekeeper of governments that have, over time, failed to form a simple and comprehensive plan for providing healthcare to their population. It has developed a defensiveness which means that those it is designed to protect instead become enemies to be turned away at every opportunity.
It sends patients letters that tell them they cannot be seen – not because they should not be seen but because they cannot be seen within a timeframe plucked out of the sky. It is as though those who manage secondary care assume illness must time-out beyond this, and magically disappear. To add salt to the wound, the letters go on to tell patients that this decision is for their own good. I imagine those who sign these letters closing their eyes and trying to believe them. Such a system invests everything in believing what it has to say, because not to do so would create a level of soul searching it does not have the flexibility or imagination to negotiate. It is an Emperor without clothes. In all of this, it has betrayed its community rather than served it. Over time, in fact, it has become a kind of illness itself.
The role of a health system is not to bounce patients away from it. It is to help, to open its arms and surround with care. It is to be the embodiment of nurturing – our mother’s wide open arms. This in itself is a medicine, one of the oldest of all. If our health system is not doing this, then it needs a revolution, not a tightening in its defences.
When I sit and back and look at the accumulation of all this madness from the end of my corridor in Levin, it is hard to avoid the conclusion that our health system is broken. Some will worry at the use of the words. But if something is not co-ordinated and not meeting need, and people are being turned away, then it is broken. Not saying it is broken only makes me complicit in the pretence that all is well when it is not. And I am sick of pretending.
In fact, the health system we are part of is not a health system at all. It is a series of knee-jerk reactions. And reactions to reactions. Like Māui’s fish, it has been cut up over and over again to the point where its fences exclude and victimise. There are days when I wish for our health city to be wiped off the face of the earth only for it to be rebuilt by our much more sensible mothers.
There are of course fundamental reasons for the mess we’re in. Some of them are existential. Healthcare has become so complex in the early 21st century. When my grandfather died of a myocardial infarction at Middlemore Hospital in the 1970s he would have been given an ECG, a blood test, a chest x-ray, aspirin, morphine, oxygen and a nitrate. Then he would have been left to God. Added to those efforts today would be thrombolytics, an angioplasty, stents, lipid-lowering agents, ACE inhibitors and coronary artery bypass grafts. He would have lived long enough to have a hip replaced and possibly a knee.
Medical knowledge has spawned myriad treatments in my lifetime. Pharmaceutical and medical technology companies have cornered the market in developing and charging for these. There is a process to go through for each advance. To begin with it is looked at in the sky, along with other signs and wonders. After it makes landfall we poke it with a stick for a time. Later, it is added to the textbook and to the arsenal of standard medical care. And finally it is demanded as a basic human right.
No one has done anything wrong in all of this. Who could be faulted? Some of these treatments are signs and wonders indeed, and they make magnificent differences. But some do not. In many ways this cycle has to continue. But the price of healthcare becomes eye-watering And in medicine so often money means time. And time means connection. And so often that is what is ultimately sucked out of our health system as a consequence.
Beyond this, New Zealand has a capital-based economy. And capital-based economies always have an exhaust. They create those who have and those who do not have. Inequality in that sense is a demon in the deep structure of our way of life, and as sure as night follows day inequality will always drive ill-health.
Our country has also undergone the trauma of colonisation. The dominant culture has alienated an indigenous culture whose people remain a significant part of the population. It has replaced its language and gods as well as its political and communal structures. Further to that, New Zealand’s economic engine has been built on land and capital that have been largely taken by force of arms and skulduggery. That is a physical and spiritual insult that plays out far beyond the lifetime of an individual human being. It is still utterly possible to see the ripples of this series of events playing out in our health system on a daily basis.
These factors contribute greatly to the stratification of New Zealand society. Most of us in our lifetime have seen the gap grow between those who have and those who do not. And this inequality creates pain and estrangement and alienation in many different ways. A society is an organism that is interdependent. And like all organisms it requires checks and balances. That is not a hard concept when we think of it in relation to individual physiologies. In fact, as health professionals we champion it. But when it comes to societies we just argue and blame. As if one part of the body wants to be in pain compared to another. This debate is as mindless as Vitamin C telling off Vitamin D for being deficient. Or Rickets growling at Scurvy. There are times to think of ourselves as many. But there are times too when we need to think of ourselves as one.
One of the great risks of alienation in societies is that families can often break. And families are the soil that our children grow in. I can tell you from what I see and hear in that small room at the end of the corridor in Levin that so many of our children are in pain because of adults. The trauma of their adverse life events has a huge impact on our health system and society in terms of chronic pain and shattered mental health, criminal behaviour, decreased engagement in employment, and the risk of perpetuating that same pain in others. It has an even greater effect on the lives of those who struggle. More than this, however: it is a greater moral requirement of societies to protect their children than it is a moral requirement to replace hips and knees and to brush the drumming fingers of death from our shoulders.
So much of our health technology seems to be aimed at preventing death. As though death in itself is the great enemy. This creates an expectation in the West that we can do anything in medicine. But that is not true. We have some superb technologies already for dealing with death. They are called connection and imagination. Swallowing down the steroids of medical technology as often as we do seems sometimes to be stopping us from using those we already have.
To add to these pressures, we have managed to inherit without question an adversarial political system that creates a chronic anxiety in politicians to be voted for every three years. And to conceal what they truly think for fear it might alienate someone. How on earth can we build infrastructure, education, healthcare, welfare and justice systems with all that going on? Each of these institutions has decades of good social science behind it, showing what can work well. They all require good thinking, planning, communication and steady hands. Not egos or infighting or weasel words.
Can we not take these institutions out of the hands of party politics? Can we not keep them safe from the right and the left? The blue and the red? Ensure that they are well planned and have cross-party support? Protect them as institutions which reflect our thinking and values? They are our family jewels. They define us as a country.
Our short and cantankerous political cycles mean that for decades successive governments have tinkered with our health system, trying either to stamp their grand sectarian imprint onto healthcare or to avoid doing too much at all to rock its boat. Like Māui’s brothers they have succeeded only in cutting the fish into a thousand pieces so that too many fall into its gape. On a piece of paper it looks great. On a Friday night not so much.
Perhaps we should look to our patients. The surface area of our country is folded, like alveoli, into a thousand Gray Streets. But all too often we as a health system are absent from them. Rather than being a great and nurturing river that grows from a thousand tiny streams, our health system is a cold bucket of water poured over people from a great height. And before the bucket is even turned over it is slopped at by 20 squabbling DHBs until it is empty. Nothing even dribbles into Gray Street. Its pain is in my corridor on a daily basis. But I fear it never makes it to the corridors it should be seen in.
Perhaps we should start again and think it through. Perhaps we should keep the consultation at the heart of the health system. This is its fundamental interaction. Within this cell membrane, sodium channels open and close, oxygen diffuses and glucose is absorbed. If we cannot achieve the small but crucial exchanges between human beings we need here, then all our other tricks are futile. We must be human and flexible at our core. And every single case must be seen and heard in its context, not only because this information is extraordinarily important for making good decisions in medicine, but also because it is a medicine in itself. This is painstaking work, but its efficiencies are immense. And our humanity demands it.
Let me be specific. A truly national health service would need to prevent ill-health as much as it seeks to treat it. It would need to identify risk factors for serious disease and develop programmes to ameliorate them. These risk factors include income inequality, insecure housing, poor engagement at school, unemployment and welfare dependence, engagement with our justice system, drug and alcohol addiction, and obesity. It would also need to continue the usual screening and vaccination programmes.
Special attention would need to be given to preventing adverse childhood events and complex trauma in our children. No matter how well a health system functions, it cannot hope to keep up with the level of dysfunction these drivers produce and pass between generations. It is one of the chief reasons there are shortcomings in our current system. Vulnerable families need to be actively identified, and health and community workers with excellent skills at connecting to those families should work with each other towards making them safe. This means resourcing a workforce that will not be overwhelmed by their caseloads and so will be free to form meaningful long-term connections to the families they are working with. It means making the social and economic adjustments needed in a society to decrease the number of families at risk.
A new national health service would also need to construct a system for treating ill-health in a population. To this end, the state could establish a series of primary healthcare hubs nationwide. These hubs would be matched to population distribution and serve 10,000 to 15,000 patients each. Most small towns in New Zealand could be serviced from a single hub. Cities would be serviced by urban and suburban hubs. These hubs would provide access to all people entering the health system. They would replace all DHBs and Primary Health Organisations (PHOs) and be directly administered by the Ministry of Health with some local board input.
Each hub would be staffed by a team of healthcare workers including GPs, nurses, midwives, physiotherapists, pharmacists, psychologists and social workers. They would work as a team so that a patient’s total health needs would be easily assessed and addressed in the same place. The hubs could also house laboratory and radiology services. Healthcare teams would be employed by the Ministry of Health, with a range of salary packages reflecting expertise and experience. The hubs would be state owned and not run for profit. Retention of staff on five- to 10-year contracts would be encouraged and supported.
Services at the hubs should be free to the public. If they cannot be free, then one fee structure should apply throughout the country. This fee would be set by government.
The hubs would offer a range of consultation times including 10-, 20-, 30- and 60-minute appointments with clinicians. They should have the ability to see acute cases presenting on any particular day, and to cater for patients with ongoing health problems. Patients could be referred in-house to allied health services such as physiotherapy and counselling, as needed. Staff at the hub could also help patients access appropriate services that would assist with any income, employment, education and housing needs.
Patients with complex health needs would be case-managed. The team would meet once a week to discuss patients who are struggling, and make sure plans are in place for meeting their healthcare needs.
The hub team would also have time available to construct a profile of their community so that they might deal with any public health problems within that area, as well as identify any vulnerable families with potentially high healthcare needs. Staff skilled in building connections with these families could make ongoing links to the individuals within them. This profile could be supported by monthly meetings with people representing local schools, police, Oranga Tamariki and Work and Income services. The hubs would therefore need to be representative of their local community and in touch with it.
Each person accessing a hub would be seen in the full context of their family or household, and services would be offered to everyone in that household should they require or want it. If the patient moved out of the area, their care would be actively transferred to a hub in the region they had shifted to, and the transferring hub would follow up until they had made contact with that new service. No one should be able to go missing.
Secondary healthcare services would also be located throughout the country, and again represent its population spread, with special allowance for rural areas. These should offer in-patient care and specialty clinics, and help to support a number of primary-care hubs. In many respects, they would continue to operate in the same way as they do now, but might also see patients at a hub, if this would help to improve patient access. There would also need to be more secondary-care clinicians available, and they would be vetted for their ability to connect culturally to the patients they are looking after.
A single computer-based system for medical notes should be readily available to clinicians in primary and secondary care throughout the country. Patient notes should be available online to all those who are involved in a patient’s care, as long as patients agree to this. A front page would contain an overview of the patient’s relevant medical issues and their management, along with any long-term medications and allergies. There would be a system for updating these medical notes regularly. Medical notes are not helpful if the information in them is not updated or ordered.
The Ministry of Health should develop a national set of evidence-based protocols for the management of common medical presentations. This would help best practice across the country.
Projection of population growth over the next 10 to 20 years should guide the construction and staffing of the hubs and secondary-care facilities. The number of healthcare workers needed should be reflected in an increased number of GPs and nurse practitioners being trained. This may require the bonding of medical students, supporting them throughout their careers with ongoing training experiences, and freeing up the exclusivity of entrance to medical schools to benefit those committed to working within New Zealand. A very large proportion of primary-care medicine involves the entwining of social, psychological and physical distress. Medical training does not prepare primary-care doctors for this onslaught, nor give them the skills to build the connections needed to untangle these webs. Entry to medical school depends in large part on intellectual prowess. Many fine young people who would make very good primary-care doctors are turned away from medical schools. It might be wiser to take those who represent the communities they want to work in and who are willing to commit to those communities over time ahead of those who will succeed academically but might not translate that intellectual achievement into practical medical situations. It may be that the training of primary-care clinicians could benefit from being shortened and rethought.
An entrance to the med school at Otago University.
A new national health service needs to be careful planned, and this planning needs to include as many stakeholders as possible to give the service a chance of being successful in the long term. Agreement needs to be reached on a plan that is well researched and can be locked in over a 25-year cycle and not be easily disturbed. Such a service would also require an all-of-government approach. The ministries of health, education, justice and social development would need to understand their role in such a service. They would also need to co-ordinate their planning and allocate their resources to help support it.
A working general practice should also be established on the ground floor of the Ministry of Health building in Wellington. As an institution it seems to me to be as far removed from Gray Street as it is possible to be. And yet a working knowledge of Gray Street is vital if the ministry is to do its job well. Every day an employee walks into a ministry office they should be reminded of what pain and inequality and hurt can create. And what remarkable hope and medicine can be found in such places.
When I was a junior doctor in Whāngārei Hospital I was called to a cardiac arrest in the middle of the night. I ran into the room, trying to calm my own panic as best as I could, and began to resuscitate an elderly man lying on his bed in the corner. Other staff and I went through the usual protocols. We threw pillows on the floor and jumped on the bed to perform CPR. I had admitted the man hours before and felt sure I must have missed something. In the opposite corner of the room was a younger man I had seen earlier in the evening too. He was in his early twenties and was waiting for routine dialysis the next day to treat his chronic kidney disease. Someone pulled the curtains around his bed as though this might shield him from what was going on.
My elderly man died. I called his wife, who came in to sit beside him, and we picked up the pillows and wrote in the notes. I went back to the perpetual guilt and fear that I always seemed to carry as a junior doctor, and hoped nothing else would happen that night. On my way out of the hospital, in the spreading hope of a new day and the great in-drawing breath of the carpark, I saw the new arrest team huddled outside in the garden at the bottom of the medical block. I went over to them. My young man in renal failure had jumped out the window that morning and killed himself.
This story always seems a metaphor to me for how we can so easily miss the wood for the trees in medicine. We can get so preoccupied with complicated medicine that we often forget to do what is simple. I always wonder what would have happened to that young man if one of us had checked on him that night.
In the end, it is patients who teach us best how to be doctors. So often we are taught to look to the gods for the path forward. Those gods come in all shapes and sizes – governments, traditions, textbooks, old doctors, the randomised controlled trial, the microscope, endoscope, telescope, any sort of scope you can think of. And yet listening to people and their communities over time has taught me the first thing I need to know in medicine – how often the gods and I are wrong.
After 23 years I can say that one of the greatest gifts of being a GP is that we never actually get to discharge anyone. Not discharging people means that, as a doctor, I have to learn to get over my prejudices. I need to figure out other ways of healing when the ways I have do not seem to work. And I need to learn to double down and like the patients who I do not always like when I first meet them. In general practice I don’t see much of what can be found in the textbook. I rarely see an appendicitis. I hardly see cancers. I don’t see strokes or von Willibrand’s disease or MVAs or gangrene or DVTs. I see pre-disease. I look out on the horizon and try to tell the difference between what is normal and what might signal an intrusion. I worry at mirages. I look at the shapes of clouds and wonder which ones are subarachnoid haemorrhages and which one are just a man licking an ice cream.
The rest of the time I listen to people in pain who are fighting hunger, anger, a sense of inadequacy, fear, doubt, sorrow, memory, poverty and loneliness. That is what general practice is. In my experience, it is a kind of medical scouting, manning an outpost and listening to the stories of another country until I realise that I am living there also.
In this sort of primary care, there always used to be an unspoken agreement between GPs and their cavalry. GPs would give up the MRI scanner and fibre-optic cables, the grand rounds and journal doctors and blood tests to sit out on the frontier and connect. And secondary care would allow us our need for second opinions, and to revert to saying things inexpertly or forgetting where anterolateral and posterodistal are. The hospital and its corridor-walkers would be kind. They would know we thought we saw something move and say, why don’t you give us a look?
But there are times now when I feel like a settler on the other side of Little Big Horn, with the cavalry all dead on the hill, their long blond hair matted over their uniforms. To all those who work in health, I would like to say that if your particular part of our broken service is being squeezed out of shape, then please don’t pass that beating on to us. Tell us and we will march with you to those in power. It is our community. I am tired of being told there are no options. And I am tired of telling patients there are no other options. Doctors are a well-padded profession – and I suspect we are just not brave enough, or yet desperate enough, to take them.
Perhaps it is time to rise up and speak out against those who manage our health system without imagination, those who tell us over and over again about the ‘real world’. The truth is that their world of bottom lines and contracts and silos is not the real world at all. It is, in fact, arbitrary, self-serving and manufactured. Maybe it is time to take heed of what physics, the arts, our shared spirituality and, most importantly of all, our consultations tell us. The real world is full of dreaming, shimmering things: love, wisdom, patience and connection. If you are not sure about that, sit down one day with someone who is sick and ask them. It is well past time to build a health system around these values.
This essay is adapted from a speech given at the 2019 Palmerston North Hospital oration, “A view of the New Zealand health system from three rooms at the end of a corridor in an old maternity hospital in Levin”.