Photo: RNZ
Under increasing funding pressure, the palliative care sector is questioning government priorities over caring for the terminally ill.
A government proposal to axe the only two jobs in New Zealand's health sector of people who were working on a national strategy for palliative care has angered those in the sector, which is already under immense strain.
It has put another wedge between those who want terminally ill patients to live well before they die; and those who want to give them the option of dying earlier.
Yes, this is another story about the stretched New Zealand health service.
But it's one that will affect the 89 percent of us who will die naturally and will require nursing at the end of their lives.
The palliative care sector - much of it provided through the efforts of volunteers - has felt under attack lately.
Here's why:
- The plan to dispense with the jobs of two people who had been giving palliative care a voice in the health service, and in government.
- Recent critical news stories about two patients who had to be moved from their aged care facility and hospice because they wanted an assisted death, which was not allowed on the premises.
- A commentary in The Listener by End-of-Life Choice Society president Ann David titled 'Dignity Denied' that said some doctors, health care facilities and hospices are obstructing patients' rights when it comes to dying. (The law says that doctors are not allowed to bring the subject up themselves, but the accusations here went further.)
- The chronic underfunding of palliative care which has left gaping holes in areas of the country for people who need and want it, but can mot get it.
- A perception that, on the other hand, there is adequate funding for assisted dying, because teams of specialists are moved to where the patients are to carry out euthanasia.
- A crushing workload in palliative care as our population ages, and as better drugs keep terminally ill people alive for longer
You might think that palliative care and euthanasia are two sides of the same coin, and to some people, they are.
But for those in the palliative care sector, they are not even the same currency.
"They didn't sign up for assisting somebody to end their life," says Tracey Martin, former NZ First MP and Minister for Seniors, now the chief executive of the Aged Care Association.
"I think that's the danger... if you force people to deliver a service that their basic belief structure is in direct opposition to... you deny everybody dignity, not just the person who is ending their life. It needs more conversation."
When the End of Life Choice Act was drawn up, hospices asked for a "conscientious objector" clause which would allow them to refuse to offer the service, but they were told that under the law no one who didn't want to take part in assisted dying would have to.
As a result there is only one place in Auckland - Tōtara Hospice - which will allow euthanasia on its premises.
End-of-Life Choice NZ president Ann David said she understood the issue of Hospice "not moving into that particular care model" and not wanting to be involved with it, but they did not have to be involved - others can provide the service.
"People are set up in their own individual private rooms. So all the doctor needs to do is knock on the front door, be shown to the patient's room for the first assessment, and the second assessment, and the administration of the life-ending medication. The other patients wouldn't have a clue what is going on in the next door room."
She said if that was not acceptable, they needed to make it really clear before the person came into the hospice facility that assisted dying was not an option there.
"There is no conflict at all between assisted dying, and hospice-level care," she said.
"No conflict. There doesn't need to be a conflict - in other parts of the world there isn't a conflict."
But Hospice NZ chief executive Wayne Naylor said hospices had a challenge anyway from the perception that hospice was a place you go to die.
"In our view, hospice is a place you go to live, until you die. If you say 'hospice is a place you go to and they will end your life', it just adds another layer of complications to the myth."
Naylor said there was a long-held philosophical basis of palliative care, and that was to never hasten or postpone death.
"We don't see actively ending a person's life as something that palliative care does. We do see assisted dying as a separate and legitimate service that people are allowed to access. It's a profoundly big thing for health professionals in particular who've gone into their profession to help people and save lives to be involved with purposefully ending a person's life."
Assisted dying has about $2.5 million allocated to it over the next four years and had $2.6m in a one-off spend on IT to support the service.
Figures on palliative care are fuzzier because a lot of it is absorbed into the health and hospital system, but the sector cares for about 20,000 patients a year. We don't know exactly where those services are, how much they cost, or where the gaps are - that was the work those two people facing unemployment were doing.
On The Detail today a palliative care doctor points out that if more money was spent resourcing palliative care people could die in hospices rather than hospital, freeing up much needed beds.
Meanwhile NZ First MP Tanya Unkovich has a members bill sitting in the biscuit tin that would give some certainty to the palliative care sector, that both Hospice and End of Life Choice proponents say they'd support.
She said it would create an obligation for the Health Ministry to have a palliative care strategy, and introduce accountability on that, so that children and adults will have equity and access to services around the country.
There was no guarantee though that it will be drawn out any time soon - in the meantime she has asked to see the new Health Minister about the issue.
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