'Why do I have to keep proving I'm dying?' Dying Kiwis rate NZ's compassion

A world-first project has revealed New Zealand's government agencies are falling behind when it comes to showing compassion to dying people.

Hospice NZ has released the first 500 results from its Dying Reviews initiative – a platform where terminally ill New Zealanders and their families rate how they're treated by hospitals, banks, workplaces and public agencies.

The results show an average score of just 3.28 stars out of five, with restaurants and events ranking highest at 4.55 stars, and government services and membership or subscriptions tied for lowest at 2.5 stars.

Many respondents said the most distressing part was having to repeatedly prove a loved one's death or terminal diagnosis.

Hospice NZ chief executive Wayne Naylor said it wasn't about what was done or said but how people were made to feel.

"What this tells us is that while some individuals and organisations are leading with empathy, many systems are still designed for business-as-usual," he said.

"And dying is often anything but that. Bringing compassion back into our systems is the key message."

Among those behind the reviews is Deb McCulloch, who lost her husband Steve to cancer six years ago.

During his illness, a small Whenuapai café became their sanctuary.

"He finally got his appetite back, and they were just so welcoming. We felt like anybody else," she recalled. "He had two breakfasts that morning."

That experience inspired McCulloch to create Dying Matters — a website helping others plan for death and start conversations many still avoid.

"From diagnosis to him passing was four months," she said.

"We didn't have the conversations, we went into it unprepared, and it was scary."

McCulloch has since retrained as a death doula, supporting others through their final days.

Karen Barnett was diagnosed with incurable breast cancer almost five years ago at age 38. She said her own experiences had been mixed.

"I don't waste heartbeats," she said. "The fact that you're above ground is a special occasion."

Barnett said while she's encountered kindness, dealing with bureaucracy had been brutal.

"I've got incurable breast cancer, why do I have to keep proving I'm dying every two years?"

The reviews painted a stark picture. One five-star review read: "I was treated with kindness and empathy. They made a very difficult situation feel a little bit easier."

But another read: "They told my dying husband to come in and sign a form. It was the last time he left the house."

Modelled loosely on customer-feedback sites, Dying Reviews invited people living with terminal conditions and their carers to share how they were treated across everyday settings — from energy providers and insurance companies to employers, public services and gyms.

The reviews were submitted by 380 individuals, either living with a terminal diagnosis or supporting someone who was dying.

Hospice NZ has launched online training modules for banks, government departments and workplaces to help staff respond with more empathy. Several major banks and two government agencies have already begun rolling out the training.

Naylor said the goal was simple: treat dying as part of life, not an administrative burden.

"Once you bring empathy into it, how people feel about the whole process changes."

"This is about designing better – not just for the dying, but for all of us," he said.

"Because how we treat people in this stage of life says everything about who we are as a society."

The platform has collected the country's first 500 accounts from people living with terminal illness and their whānau, rating how they were treated by workplaces, banks, government agencies and more.

"The most consistent theme was repetition," Naylor said. "People told us they had to keep retelling their story - every new form, every new person. That lack of empathy is exhausting when you're already vulnerable."

Despite the low points, reviewers also described moments of humanity that changed everything: a pharmacy assistant who remembered a patient's name, a bank manager who made a house call, or a café that simply treated them like anyone else.

Others shared stories of waived fees, home visits, and compassionate phone calls.

Many described feeling unseen, unsupported or forced to fight bureaucracy at a time when they were at their most vulnerable.

Last year, an estimated 38,000 people died in New Zealand – the vast majority following a period of illness, ageing or gradual decline.