Need assistance?
Every year, around 34,000 New Zealanders (120,000 Australians) die from natural causes – most after months or years of illness, frailty or decline. During that time, life continues within the machinery of everyday society: banks, government agencies, insurers, utilities, workplaces and supermarkets.
And yet, until recently, we’ve never stopped to ask the simplest of questions: how well do those systems treat people when they’re dying? After all, at some point we will all be in that position.
Listening to those who are dying
Hospice New Zealand – which represents all hospice services nationally – recently conducted a world-first study inviting people who are dying or caring for someone who is to rate how they’re treated by everyday organisations. More than 500 reviews were submitted across 13 sectors, from healthcare and banking to public services and retail.
The findings are striking. The national average score was 3.28 out of 5 stars – suggesting compassion is present, but inconsistent. In many cases, the same organisation received both one- and five-star reviews. The difference came down to the individual staff member.
One reviewer wrote: “I was treated with kindness and empathy. They made a very difficult situation feel a little bit easier.” Another recalled: “They told my dying husband to come in and sign a form. It was the last time he left the house.”
There are hundreds more like this. Stories expose the truth that kindness remains optional in many public systems – dependent on chance rather than design.
When government ranks last
The lowest score in the entire study was for government agencies: 2.5 stars.
People spoke of being passed from department to department, having to prove their terminal diagnosis repeatedly, or struggling through bureaucratic systems that could not process the reality of death. Some were still receiving letters demanding action from a deceased person; others spent months trying to close accounts or secure modest financial support.
There is no central notification process for serious illness or death in New Zealand. Families must contact dozens of agencies individually – retelling the same story, re-uploading the same documents, reliving the same grief over and over.
By comparison, community groups, pharmacies and supermarkets were among the highest-scoring sectors. Their common trait was simple: human connection. A pharmacist who knew a customer’s name, a supermarket staff member who offered a seat, a local club that dropped off food or checked in.
The digital divide at the end of life
The research also highlights how digital-first systems exclude those least able to navigate them.
Logging into apps, uploading IDs or waiting on hold for an hour is frustrating for anyone – but for a 78-year-old managing terminal cancer, it can be impossible. Many organisations now provide no alternative.
One reviewer described impersonating their dying father just to cancel an online subscription. Another said: “It’s emotionally draining repeating to strangers that your mum has just died while your Dad weeps next to you.”
Technology has improved efficiency for many, but it has also erased the human override. When the system doesn’t recognise dying as a valid use case, people fall through it.
Bureaucracy versus humanity
Across every sector, a pattern emerged: process over compassion.
Rules intended for fairness often became barriers to dignity – “wet signatures” required from people too frail to hold a pen, standard call-centre scripts that ignored context, rigid refund policies that placed profit above empathy.
These are not isolated anecdotes; they’re signals of a deeper design flaw. Most public and private systems are built for the majority – the healthy, functional and time-rich. When life deviates from this norm, the system has no setting for tenderness.
Dying as a social design challenge
We often talk about dying as a medical or social issue. It’s both – but it’s also a design issue.
Hospices see daily how bureaucracy can amplify suffering. Yet the lesson here extends far beyond healthcare. A society’s quality of life is reflected in how it treats people when they can no longer “perform” as consumers or taxpayers.
What this data shows is that compassion cannot be left to chance. It must be embedded as a core requirement – just like accessibility ramps or privacy laws.
What needs to change
The fixes are not expensive. They start with literacy, leadership and design intent. Such as:
- human-first options alongside digital ones – phone lines that connect to people, not bots
- simplified documentation and processes for those with terminal diagnoses or recent bereavement
- training for frontline staff on language, empathy and flexibility
- integrated government systems so families can notify multiple agencies once, not a dozen times
- metrics for dignity, not just efficiency – because what gets measured gets improved.
These are the same principles that transformed accessibility standards and child-safety policy. They can do the same for dying.
A call to governments – and to all of us
The Dying Reviews data offers governments, corporations and communities a rare mirror. It shows the gaps are not only clinical or financial – but emotional and structural.
If every country adopted a “Dying Review,” we would see which services consistently perform poorly and where empathy is most needed.
This should alarm us. Because at some point, all of us – or someone we love – will depend on these same systems.
So, the question isn’t whether we can afford to design for compassion. It’s whether we can afford not to.
If we can design for convenience and profit, we can design for dignity. And the time to start is now.
Because dying is not an afterthought in life’s journey – it is part of living. The way we design for it says everything about who we are.
The Dying Reviews project collected more than 500 firsthand accounts of how everyday systems treat people in their final phase of life. Find out more at www.dyingreviews.org
Wayne Naylor is chief executive of Hospice New Zealand
Comment on the story below and find more opinion articles here. Do you have an opinion to share about an issue or something topical in the aged care sector? Get in touch at editorial@australianageingagenda.com.au
Advertisement
