Mary Potter Hospice chief executive Tony Paine says without more government funding, the future for the service looks "bleak". Photo: RNZ/ Ruth Hill
It is an essential health service that relies on cake stalls and sales of second-hand clothes just to keep the lights on.
Now some of the country's biggest hospices are warning they will have to cut some services, if they do not get an urgent cash injection from the government.
Last week, Hospice New Zealand chief executive Wayne Naylor met with Associate Minister of Health Barbara Edmonds - the first minister ever with responsibility for palliative care.
With all the upheaval in the health sector, Naylor feared there was a danger that hospices could be overlooked.
Hospice New Zealand had to remind Te Whatu Ora that many of the old contracts with district health boards - $68 million worth of government funding - were due to expire in June.
Wayne Naylor. Photo: RNZ/ Ruth Hill
"We've asked 'Can you look into this?' because hospices are going to end up with no funding if their contracts aren't renewed."
Until recently, there was no-one at the health ministry specifically working on palliative care services.
"There are seven to nine FTE (full-time equivalent staff) dedicated to the Assisted Dying Service, for around 300 people who use that service every year in New Zealand. They've recently appointed two palliative care FTE, who are in theory responsible for the other 30,000 people who are dying.
"So there's a definitely an inequity there within the health ministry."
While they had been warned this week's so-called "bread and butter budget" was unlikely to include a specific funding increase for hospices, they were not waiting around for the health reforms to deliver.
The 32 individual hospices were working on their own plan for a nationally agreed range of services and a fair price for what they do.
And 1000 volunteers were scheduled be on the streets of the capital this week - Hospice Awareness Week - rattling the bucket for donations.
In Wellington, for the first time in years there are no buckets to catch leaks from the roof in the patient areas of Mary Potter Hospice.
Chief executive Tony Paine said the roof in the 30-year-old building had leaked from "day one".
"It's a big roof and it's costing us $700,000 or $800,000 to fix it." But "most of that has been contributed from a trust set up by a gentleman, Ian Crabtree, who died in our service in the early 2000s. They've come along and said 'We'll pay for the new roof', which is an amazing act of generosity.
"But it's also part of the financial instability that we face as a hospice in an under-funded health system," Paine said.
Wellington's Mary Potter Hospice is finally getting a new roof after years of using buckets to catch the leaks. Photo: RNZ/ Ruth Hill
In the foyer, there were raffle tickets on sale (the prize - a lovely hand-made quilt), and all the art on the walls was available for purchase.
At the rear of the property was Mary Potter's boldest money-making venture: a block of 40 apartments, which would provide income once the mortgage is cleared ... hopefully within a decade.
But that was not enough.
Annual operating costs for Mary Potter were around $16 million - of which half came from the government.
The shortfall this year was nearly a million dollars, with costs continuing to rise and traditional fund-raising taking a hit in the last couple of years from Covid-19 and inflation, Paine said.
"Clearly that's unsustainable for us, and if we don't find a way to close the gap we're facing a pretty bleak future."
The hospice recently had to make five support staff redundant.
"And that's been a painful process for us, and painful for the people involved, and we're not the only hospice in this position in New Zealand."
Last year, hospices provided free care to nearly 18,000 New Zealanders and their families.
Hospice New Zealand's Naylor said that cost $186 million, of which individual hospices had to find more than half ($94m).
Some were reluctantly considering cuts to clinical services.
"The bigger hospices with big deficits are considering things like how they manage patient referrals," Naylor said.
"They may be looking to do things like: 'This person must be expected to die within the next six months' - because they can't afford to have them on their books for a year, whereas previously that wouldn't have been the case.
"How many follow up visits can families have post-bereavement? So having to set very firm time-frames so they can best use their resources and not spread themselves too thin and not provide a good service."
Mary Potter nurse Misty Sparks - one of 170 staff employed across Wellington, Porirua and the Kāpiti Coast - said that would be a tragedy.
Many people think hospices are just about death, she said.
"And that's really not what hospice is truly about. It's about how can we help you live a good quality of life you have left, in a meaningful way."
While working for a hospice in the United States, staff arranged for a woman to get her dying wish to see her son one last time.
He was incarcerated elsewhere in the country, and they found funding to transport him and a prison guard to the hospice.
"It was just a few hours of her being able to see her son, and she did pass the very next day.
"So that's what I'm talking about, sometimes the things that matter aren't budgeted in the health side of things, like medicine. But it was something she truly needed and deserved."
Paine said the heart of Mary Potter was this multidisciplinary team, including its 500 volunteers who run the op shops, record people's life stories, drive patients to appointments, serve meals and do whatever else is needed.
"A busy hospital can be a hard place to be when you have a serious, life-limiting illness. This is a place where we try and be a bit more homely. We see you as a person, not just 'the lung cancer in bed 10', or whatever."
Delis, 79, who lives in Paraparaumu, was diagnosed with terminal bowel cancer just before lockdown in 2020.
She had already outlived her original prognosis by nearly a year, and said hospice had been "a life-line" - especially the day programme she attended every Tuesday.
"And we all just chat and talk and share our stories. And I find for me, because my world has got so narrow, they bring their world into mine.
"It just builds my confidence up. It's like I go there, and I have an injection of life."
Delis, who went backpacking in her 50s, and moved to Australia at the age of 60 to work in Freemantle for ten years, had always been independent, and she wanted to live life to the end.
"I'm not backwards in coming forward when I need something. But I'm not going to ask for something if I don't need it because I'm a pretty independent person.
"They are all so compassionate, without being condescending. I regard them as family."
