Palliative care can't just survive on 'cakes and op-shops' - leaders

Hospice and aged care nurses are paid around 20 percent less than their DHB peers.
Hospice and aged care nurses are paid around 20 percent less than their DHB peers. Photo credit: Getty

By Alex Perrottet for RNZ

According to leaders in the palliative care field, the sector can no longer survive on "cakes and op shops".

Dr Aileen Collier, Chair of Palliative Care Nurses New Zealand, said nurses' pay was just the start of major problems facing a sector that is caring for an increasing number of patients as the population continues to age.

"It's urgent, if we don't do something now, we're going to be in real trouble."

Collier said hospice and aged care nurses are paid around 20 percent less than their DHB peers, and that was backed up by Dr Brian Ensor, the Medical Director at Hospice Waikato.

"That is a real struggle," Ensor said.

"The funding of nursing staff and allied health staff, trying to keep them within cooee of the DHB, which is a major competitor for experienced staff, is a real problem."

And the concerns are shared by the aged care sector - which now cares for the greater portion of people in their final months and days.

Rhonda Sherriff, New Zealand Aged Care Association clinical advisor, has worked for 35 years in the industy and co-owns a retirement village in Christchurch.

She said 38 percent of people getting palliative care are dying in aged care facilities, with the other 62 percent fairly evenly split between people dying at home or in hospitals.

She said registered nurses in aged care were not paid enough for all that increased work.

"Our registered nurses are of equal calibre to any other registered nurse working in either DHBs, hospices or anyone else in the country in primary care," she said.

"And I believe they need to paid equitably to their peers in other sectors."

She said there needed to be more nurses - not fewer, but the sector was dangerously relying more and more on overseas nursing staff in the COVID era.

"I think it's hard work; it's taxing both physically and mentally," she said.

"We are a 24-hour service and it may well be that the acute hospital settings are more attractive to young nurses to go and want and work in. I guess we are not seen as an attractive sector."

Dr Rachel Wiseman, who works in specialist palliative medicine in the Canterbury DHB, said the pay issue was also affecting palliative services in hospitals.

"We're really struggling to train enough new specialists to meet predicted demand," she said.

"So we have quite a significant proportion of our workforce who are older and who will retire in the next five to ten years and we're not training enough people to replace them."

Wiseman said hospitals need to attract those new doctors, but ultimately it comes down to money. 

"Who's going to pay for it?" she asked.

"Because the funding that comes centrally only pays for part of the post, and the rest have to be met by the district health boards, which are all in the red at the moment."

Ageing population

New Zealand's death rate is set to climb by 50 percent in the next 20 years, as our population ages. 

New Zealand's hospices aren't equipped to look after so many dying patients - and nor are hospitals.

Mary Schumacher, CEO of Hospice NZ, said this was not about the future, but about now.

"I think we really are behind," she said.

"We need to have a clear focus that everybody in New Zealand, irrespective of setting, deserves the very best possible palliative care and end of life care."

Each year the New Zealand government provides about $78 million, and the last proper increase in funding was the 2015 budget, under Jonathan Coleman. 

There's $155 million a year in costs, meaning the $77 million dollar shortfall is made up through fundraising.

Collier said that was ridiculous.

"If someone said, right, your maternity services are now going to be funded by cake and opshops, we would laugh, we would just laugh" she said.

"So why are we accepting that this is ok, at the other end of life?"

She said palliative care always seems to be an afterthought for those providing the funding and strategies.

"Big new cancer control agencies with funded staff, but palliative care always gets left as an add-on, in part because we don't like talking about this."

Wiseman said she agreed and because palliative care had changed so much, the funding model need to change too.

"Palliative care is the only specialist service that has to rely on charitable fundraising for essential services," she said.

"I mean that's just crazy. That doesn't apply to any other speciality in New Zealand, as far as I know. Because it's a health service we're providing. This is no longer a community hospice where people go to die, this are specialist services."

Mary Schumacher said hospices are made to feel like they are invisible.

"If you did a search through some of the documents, and the strategies, we don't even get mentioned," she said.

"Palliative care is not even mentioned, it's as if people don't die in New Zealand. We don't even get mentioned. We talk about all sorts of things but what we don't talk about is the fact that people who are dying have palliative care needs."

A thorough look at each of the parties health policies unearthed very little for the ageing, and dying.

Only the New Conservative Party and the Green Party even mention palliative care, while Labour would appoint an Aged Care Commissioner and have a dementia action plan.

New Zealand First's policy said it would change funding to reflect population changes such as age, and increase services in rural areas - as would the New Conservatives.

And it's the people in those rural areas that cause most concern to frontline staff.

Dr Salina Lupati, who had 10 years experience as a GP before moving into palliative medicine, is researching world standards in care for her PhD at Otago University.

She said what patients want most, is to be cared for at home - even up to death, if possible. And she said it was possible to achieve that - with adequate funding and support services. 

She said there should be a tailored and streamlined service, with a single port of call for the patient and family.

"Not multiple numbers they need to call depending on the situation and not too many providers entering their homes," she said.

"And continuity in that care is very very important because patients and their families don't have the energy and time to repeat the stories multiple times."

Lupati also mentioned the comparison with maternity, saying mothers have dedicated professionals to care for them and their baby at the start of life.

"And it's also freely available to all the mothers, as it should be," she said.

"But by contrast there's no standardised pathway for end of life care, for the patient in their final year of life."

Iupati said whānau would be best resourced to care for the sick and frail at home, with just a little bit of training, but there was no funding model to allow them to take time off. 

"What worries me is that the families are under so much pressure, they have to pay the bills, and they cannot spend the time, the final weeks and months, with the dying family member, even if they want to," she said.

"They do have to pay the bills, they have to pay the mortgage, they still have to go work. I mean we have paternity leave or maternity leave."

The new government will have many crying babies to attend to once it takes office - but these professionals say now is the crucial time for a rethink and a restructure, and palliative care must be properly integrated into the health system and budget, or the nation risks sidelining people,  particularly in rural settings. 

Schumacher said having so many different systems around the country was making that worse.

"There isn't a transparent funding model, there isn't a funding model for hospices, for palliative care that says 'this is what we're purchasing, this is what we're paying'," she said.

"Every DHB and every hospice is funded differently, so some hospices have higher funding than others."

The experts said in the crucial conversation on health funding after the election, the elderly need to be heard.

Collier said in all this, the voices of the elderly and frail were lost - and that was the real worry. 

"The way we're treating people in this, it's quite shocking really," she said.

"You know, do they get a say? Where's their say in all of this?"