Nerd Sunday: The value of life

Something’s making me uncomfortable.

This week, there was an announcement. It mostly went under the radar - but disabled people certainly noticed.

The government sent out an email with a proposal to cut back compulsory mask wearing. A bunch of people have been invited to comment on the proposal, including the business world. Disability organisations were given 24 hours to respond. They were pissed off, and to be fair, the PM acknowledged they had a point.

The details of the proposal? As far as I can gather from RNZ:

• Cabinet is about to consider moving from Orange to Green, meaning no more mask-wearing requirements in everyday places, like supermarkets, malls and public transport.
• Visitors to some healthcare services will still have to wear masks: primary care (including your GP), urgent care, hospitals, and residential care for disabled people and old people. But visitors to other health services, like dentists and physios, will be exempt.

Why am I uncomfortable? It’s partly about the substance of the decision. I’m not ready to totally abandon masks, and I think I have good reasons. But I’ve also got questions about the way the decision’s being made.

This stuff is bloody hard, and I feel for the people in the hotseat. Decision-makers weigh up both policy and ethical issues. They have to juggle a bunch of competing objectives, considering a lot of evidence, to make a call on what matters most. In short, decision-makers have to put a value on human life. There is no single right or wrong way, but some approaches are worse than others. This risks being one of them.

I think this stuff is really important. To explore it, I’d like to dust off some ideas I’ve come across in my time as a policy person and a nerd. Bear with me. I’ve made boring things slightly less boring before, and I think I can do it again.

This post comes with my usual disclaimer - I’m not an expert here - plus another one. I haven't been able to track down the original government email. I’ve had to use public sources.

Let’s deal with the most boring stuff first.

Righto. We’re talking about decision-makers, but who are they?

On important stuff like this, Cabinet calls the shots.1 Cabinet is made up of twenty Ministers who are basically the hottest Labour MPs. Think of them as the ones that would be picked if the government was making a sexy fundraising calendar.2

But Cabinet, while important, doesn't usually magic up decisions out of nowhere. It gets advice from officials with the right expertise - people like Ashley Bloomfield.

Cabinet doesn’t have to take officials’ advice, but they should do the diligent thing and consider it. And when officials give that advice, they should bring their A game. That means using good evidence, setting out the options, and giving the pros and cons. It should involve finding out what the public thinks and taking it into account. Even though officials don’t ultimately make the decisions, their advice can play an influential part.

Two and a half years ago, we preserved life at almost any cost.

I was at work when the PM announced it. We shuffled about the office, trying to figure out what we needed to take home - for how long, no one knew. Some people unplugged their dusty computer monitors, wrapping the cords around the bases, or stuffed papers into their bags. A couple of guys cracked a beer, because no one knew when we’d be able to share the next one. We were fatalistic and funny.

That was March 2020. Cabinet had decided we would go into lockdown. They had weighed up the costs of a lockdown - social, economic, and other kinds of harm - and they came down on the side of preserving human life.

A handful of detractors opposed the lockdown. Often they’d argue that people die every day from other preventable stuff - from the flu to cancer to car crashes. And we let them die. So, in a world where shit routinely happens, why inflict all this harm in response to this one particular brand of shit?

At the time I would have said, this is different. We didn’t know exactly how COVID spread, or how quickly; only that it killed people at a high rate when it did. We had limited information from other countries to help our decisions. There was only one tool in our public health kete: social distancing. In short, the decision wasn’t only about saving lives. It was about managing risk, uncertainty and fear - things that applied less to problems that we understood better, like flu and cancer and car crashes.

The thing was, the detractors had a point. It just wasn’t the point they thought. Their question was, why aren’t we more consistent in just letting people die? My question flips theirs around. Now we have clear evidence that masks work, and we know how little it takes to wear them, why aren’t we more equitable in letting people live?

The truth is, we’ve never preserved life at any cost - and the harder truth is, we probably never will.

This part of my post comes with a warning. It’s shitty, and potentially upsetting - because what is an academic exercise to some, balancing evidence and dollars and arguments, is daily life, potential death, for others. Disabled people, people with serious conditions, have told us this time and time again.

Most of us make judgements about the value of preserving life, perhaps without realising. That’s not the same as talking about the value of life itself: every person has worth and dignity. It’s more a debate on what we are willing to do - or refrain from doing - to keep someone alive, when there are never enough resources to go around. And it’s influenced by the context and circumstances. Say there’s one heart to donate, but two people need it: a teenager and an 83-year-old. Most of us, intuitively, would see this situation the same way, even knowing it would be a terrible decision to actually have to make.

But it’s harder than that: keeping people alive isn’t enough. Government needs to do more - it’s also responsible for making sure we have OK lives. That, too, involves trade-offs. When I had a terrible first birth, the hospital staff weighed up whether to give me a blood transfusion. They decided against it - I assume because blood is a limited resource. I took a while to recover, and my quality of life was probably lessened for a time. But if I’d got the transfusion and there’d been a car crash that night - with no blood left for someone else - the opportunity cost could have been someone’s life. I believe the staff made the right choice.

Well, that was easy to resolve. Why don’t decision makers just follow that same rule: first and foremost keep people alive, and if there’s money or energy left once that’s sorted, they can worry about quality of life? It’s got some logic to it. Unfortunately, it doesn’t always work well. My blood transfusion example was easy, because the situations it compared were similar - blood to make someone get well quicker, giving them quality of life, versus blood to stop someone dying. Government has the much harder job of weighing up things that aren’t alike.

How many times have you seen something like, ‘When we’ve got serious problems in this country, like people dying on waiting lists, why is the government wasting money on te reo Māori?’ And you can almost feel the author - let's call him Keith - lean back from his keyboard shouting BOOM! because when you’ve played an intellectual masterstroke like that no one will ever guess you’re just a big f*cking racist.3

This example is kind of a frivolous, but kind of not. I’m making two points here. The first is that if we didn’t think about quality of life, Aotearoa would suck. Yeah, we could spend every last dollar on cancer care, or safer roads, but we would lose things that are immeasurably precious. The second point is, this argument can be weaponised. Let’s just say, Keith probably doesn’t actually know how long waiting lists are, the costs of them, or the challenges to clearing them. Keith doesn’t really care. That was never his real motivation.

Our decision makers have to make policy judgements that weigh life itself against quality of life. No decent society could function without this. The question is, how can these decisions be taken decently?

So, why am I running through all these arguments?

The long answer is, COVID is complex, from both policy and ethical perspectives. Everyone’s suffered - but like everything else in our society, that suffering has been unequally shared.

I believe that, by and large, decision makers have done their best, confronted with impossible choices in a policy and ethical minefield. In choosing whose lives to preserve they were also choosing whose lives to harm. It’s easy to write a post about all this. It’s far harder to ponder it at night, looking at the ceiling, a tight weight in your chest.

That was the long answer. Here’s my short answer: having run through these arguments, I now want to say why I don’t think they apply. This is not a complex policy or ethical situation. We are only being asked to put a bit of cloth or paper on our f*cking faces. Let’s get a grip, Aotearoa.

Why will I not just get to the point?

OK. After that outburst, I’ve regained my composure.

We’ve talked about trade-offs. Sometimes, the government has to weigh up preserving life against quality of life. If you want a stark example, think about the border. Without a doubt, closing the border kept people alive - especially disabled people and people with health conditions. But the pain and hardship it caused those who couldn’t come home, and those who desperately wanted to see them, was very great indeed.

When trade-offs are made decision makers will ask, what are the costs involved to achieve a benefit? Or, how much pain would it take to get the gain? Who will end up worse off, who will end up better off, and does it look fair? Often, these things will be finely balanced.

Maybe there’s a case for dropping mask requirements in places they may cause economic harm. The little movie theatre near my house has cut back its opening days. My guess is they make their money from food and drink - and without those sales it’s been harder to turn a buck. I don’t want the theatre to close. People would lose their jobs, and the folks in the nearby retirement village would lose an amenity they enjoy.

But for the life of me, I cannot see the case for dropping masks in places like supermarkets or public transport. Masks work. They don’t stop supermarkets from opening or trains from tooting. The punters will keep turning up. No one loses a buck. There is no significant trade-off: it’s gain without pain.

There is merely inconvenience. Inconvenience. And that’s what gets me.

Past generations did stuff for society, like go to war or pay high taxes to build the welfare state. As individuals, we probably like to believe that we could be like them - if push comes to shove, we would do what it takes to protect the lives of others. Yet a whole bunch of us are bleating that it’s time to go back to normal because our faces are itchy.

What we called normal was ethically intolerable.

People keep dying. It is harder, now, to figure out their numbers since they’ve faded from the news; but they die every day, nonetheless, and their families continue to bury them. We are no longer told if they had ‘underlying conditions’ - words that became a code for our indifference to the people they applied to.

Disabled people, people with serious conditions, have become party poopers - or would be, if they’d ever been invited to our party. They want to be alive. We want our faces to stop itching. A trade-off must be made.

The issue here, I don’t think, is wholly with the government. I think it’s something called social license - an important concept for decision makers. If people don’t see a rule as reasonable, then best case scenario, they’ll simply ignore it. Worse case, they’ll camp out at Parliament, shit on the lawn, set things alight, and hurl pavers at the police.

Social license comes from the people. And not enough people care. Ultimately, that’s the problem. We think about returning to normal as if normal was somehow neutral, equal or fair. We’re wrong.

If anything, we should be considering if there’s a case for permanent mask wearing in at least some public places. While our public places remain significantly unsafe for some people - for the sake of an easy accommodation, and the avoidance of itchy faces - then the trade-off we make is our decency as a society.

Which takes me back to my question: what about the process behind this decision?

Let’s circle around. I started out this post saying I’m uncomfortable not just with removing mask requirements in all settings. I’m also questioning the process to take the decision. I said that decisions should be weighed carefully, and the views of public should usually be taken into account.

I’m now going to modify that a little. While public feedback matters in policy, there’s a choice about how much weight it gets in the decision making, relative to other kinds of evidence and arguments. In my view, this decision needs to made with public health at the forefront, and by careful weighing of the different harms involved - to life and to quality of life.

It’s fine to ask people what they’re experiencing, upsides and downsides. But asking for people’s opinions on public health pits the more powerful against the less. And in a society where disabled people, people with serious conditions, have always been expected to take a back seat - the normal we want to return to - I can promise you which way the feedback will run. This risks becoming a referendum on the value of people’s lives, cloaked innocently in comms-speak.

Ethically, what are decision makers even supposed to do with this feedback? Go back to the disabled community and say, sorry guys - we’ve counted the votes, and we know you folks would prefer to stay alive, but there were more people against?

Why I will still wear a mask, whatever happens next.

This bit isn’t about policy. Maybe it’s not rational or quantifiable. But it’s real to me.

I have long COVID: I’m almost five months in. It’s no exaggeration to say I’m not who I was before. That person back then, her brain danced as joyfully as her body toiled. I’m not sure I will be her again, or at least, not for a while. I don’t know what another COVID infection would do to me. I don’t want to find out. And I want to protect others from going through what’s happening to me.

Because it is hard: but holy hell, people have gone through harder.

I go into the office a couple of days a week. My mask rubs against my skin during my morning commute. My lipstick smears its insides. My breath travels upwards, and it steams up my glasses, so I fumble for my wallet when the clippie asks for my ticket.

From time to time, I suppose, I feel a little frustrated. Then I remember back to two and a half years ago, when this all began. When we were all locked down with restrictions so stringent people could not hold the hands of loved ones as they died. Said goodbye to them on iPads held by nurses who wept. Left them in the cold after they’d gone, because they could not bury them.

We have talked about trade-offs. It is a passionless language, but all it really means is very human: to give something up, even though it may hurt, for something greater. Those ones who sacrificed, they helped keep the rest of us alive.

I will wear my mask for them. They gave much more for me.

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