The Disgrace Of The Hospice Care Funding Scandal
In the referendum on assisted dying in which it was voted in by a decisive majority (65%) in 2020, I voted against it.
This was primarily because much of the argument in support seemed to me to centre on difficulties in accessing palliative care, including in hospices.
My view was that the priority was to improve accessibility to palliative care. I would have felt better if palliative care access had been improved but sadly it has further deteriorated to the point of crisis and tipping point.
Understanding palliative care and hospices
Palliative care is a branch of medicine regulated by the Medical Council. It improves the quality of life of patients and that of their families who are facing challenges associated with life-threatening, including terminal, illness. When a person receives a terminal diagnosis, they can choose to receive hospice care.
Annually hospice services in New Zealand provide palliative and holistic wrap around care to over 10,000 people who die, as well as another 9,000 living with terminal illness, and their whānau.
Although hospices are not statutory health authorities, everything they provide is free of charge. Roughly there is a 50:50 split between government funding and hospice fundraising. Hospice New Zealand is the national representative organisation of these 32 hospices.
Hospice health professionals include doctors, nurses, therapists (physical, occupational and speech) and social workers. Consequently, even more so than hospitals, they are labour intensive.
Hospices provide medical care designed for the end of a person's life. The purpose of this care is to improve the quality of the life that these patients have left. It includes pain and other symptom relief, along with emotional, psychosocial, and spiritual help for both patients and their families.
Hospice care operates at four levels depending on circumstances – routine home care, continuous home care, general inpatient care, and respite care.
Most patients under hospice care are able to stay in their own homes, with brief admissions to hospice for respite or to adjust pain medication.
Hospice funding crisis reaches tipping point
Unfortunately, despite the invaluable work for the terminally ill that only they as institutions can provide, the funding crisis that hospices face has reached a tipping point.
This was brought to the fore by Kathryn Ryan's Radio New Zealand Nine to Noon programme (6 June): Hospice funding crisis.
The focus was on one of the largest hospices, Tōtara Hospice, which services the communities of South and South-East Auckland. It has had to formally advise Health Minister Simeon Brown that it is planning to reduce services next month.
This action comes after years of warnings from hospices that their funding was unsustainable. This was reinforced by a recent report by the MartinJenkins consultancy which concluded that for the first time the hospice sector won't be able to raise enough money to break even.
Expanding the tipping point
Radio New Zealand's coverage of the funding tipping point continued three days later on Morning Report in a thorough piece by health journalist Ruth Hill: Collapse of hospices could cost taxpayers millions.
Hill reported the hospices warning that funding shortfalls were putting their critical services at risk. Already they were only available to one out of three New Zealanders who were dying. She provided individual examples of this sorry state of affairs.
The Government's scuttling of the pay equity claim for hospice nurses also had a negative impact. Hospice New Zealand chief executive Wayne Naylor noted that hospice nurses were currently paid up to 35% less than Health New Zealand nurses. He said:
That was a real out-of-the-blue sideswipe for hospices and hospice nurses in particular, to have our pay equity claim, which was almost completed, just stop.
Hospices were being forced to consider two unpalatable alternatives. Naylor described it this way:
That then falls back on community to provide more money to support their local hospice. The alternative is that hospices have to make some staff redundant so that they can increase the salaries of other staff, and that leads to a reduction in services.
Minister Brown has said that Health New Zealand had enough funding for hospice care. However, Naylor reported that the organisation had told Hospice New Zealand something quite opposite to the Minister:
They told us they had no more funding, that they have no contingency that they can call upon, and the people with whom we met said they had no authority to allocate funding from anywhere else. So essentially it's a no to funding from Health NZ right now.
Ruth Hill also tellingly cites the MartinJenkins report which that the 28 partially publicly-funded hospices are returning at least $1.59 in health benefits for every dollar of taxpayer money received, including fewer emergency departments and hospital admissions or rest home stays.
What is to be done
Simeon Brown maintains that he and his government value the services hospices provide. What they provide is as core to the public health system as the services provided in our general practices and public hospitals.
Further, many (probably most) of the terminally ill are people who have invested in the public health system for much longer than those who sit around the cabinet table.
They have done their bit to ensure their health system has been funded for the benefit not just for themselves and their families.
It has also for hugely many more others that are unknown to them. It is only reasonable that hospice care should be available for them in their final weeks or months.
It is not just a question of the hospice service being sufficiently funded. It should not have to be financially dependent on charity to survive, let alone function.
This is fundamentally wrong. Being dependent on charity only makes sense if governments are so cynical to factor into their calculations that the terminally ill don't amount to many votes and not for very long!
It also makes sense if governments are so short-sighted that they can't see the financial return of investing in hospice care!
If hospice care being dependent on charity does make sense, then the words 'disgrace' and 'scandal' have no meaning.
Ian Powell
Otaihanga Second Opinion is a regular health systems blog in New Zealand.
Ian Powell is the editor of the health systems blog 'Otaihanga Second Opinion.' He is also a columnist for New Zealand Doctor, occasional columnist for the Sunday Star Times, and contributor to the Victoria University hosted Democracy Project. For over 30 years , until December 2019, he was the Executive Director of Association of Salaried Medical Specialists, the union representing senior doctors and dentists in New Zealand.
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