Dying At Home: The aged care reform wish list

There’s a very interesting palliative care change in the Government’s aged care reforms and it’s raised my eyebrows.

In recent days you may have seen information about a bunch of changes across the aged care system. The changes have come after the damning Royal Commission into Aged Care Quality and Safety which revealed a system in crisis. The changes are aimed at making the sector more regulated and transparent, improving the care of older Australians. Great!

Under the reforms, anyone under the new ‘Support At Home’ care package system will be eligible for up to $25,000 in additional support to spend their final three months of palliative care at home, rather than at a hospital. (Again, great!)

There are no details about this dying-at-home funding – that will come in a few weeks apparently.

It’s a smart and strategic move by the Federal Government. It’s common knowledge that we will soon be approaching ‘peak death’. That is, the large baby boomer population will soon hit their 80s and it’s then their health and care needs will increase. (I’ve blogged about this previously.)

The Government knows the hospital system isn’t going to be able to cope with this surge so it makes sense to keep people at home.

Where do people die?

A 2018 Productivity Commission found up to 70 per cent of Australians would prefer to die at home, but the reality is that most will die in hospital. About half of the deaths in Australia happen in a hospital and a further 30 per cent in aged care (ABS).

One of the main reasons that people die in hospital is because they can’t get the support they need at home. It’s hard on carers and often specialist equipment is needed.

The Reforms

The details of the new palliative care support payment haven’t been released yet, but Aged Care Minister Anikia Wells says the $25,000 payment is designed to be fast-tracked and would be on top of other support the person is already getting.

“Older Australians will get support to spend their final weeks at home, surrounded by loved ones in an environment they cherish, instead of rushing precious moments into hospital visiting hours,” Minister Wells said.

I’m not convinced… yet.

There’s no doubt that this move is a great initiative.  Last year I navigated the home care system after my 90yo father had a fall. He went from independent to absolutely not independent in one swift trip. I witnessed first-hand medical care that was hamstrung by a significant lack of resourcing, both in and out of the hospital.

I paid for some of his home modifications myself because the local, federally-funded provider had run out of money and suggested that I wait three months for the next financial year to kick in because that’s when they’d get another round of funding. And then there was the long wait for an aged care package.  (In June, 68,000 people were on the wait list for a home care package.)

Countless aged people don’t have a relentless daughter to advocate for them, make arrangements, and fund care. And this worries me.

A staffing void

So yes, this aged care reform is important and much needed, and I look forward to seeing the details of this palliative care feature. The key will not only be funding, but it’ll be also staffing. According to the Health Workforce Australia (HWA), there is a massive nursing shortage. Years ago, they predicted a deficit of up to 100,000 nurses by 2025. And many nurses now are fatigued and burnt out.

Compassionate Communities

So, who is going to pick up the slack?

We all will. Hopefully.

Compassionate Communities is a global movement that’s been gaining momentum in the last couple of decades. They involve the activation of community members to care for each other.

Palliative Care Australia says, “Compassionate communities are a core part of public health approaches to palliative care, end of life care and bereavement. It describes communities which play a much stronger role in the care of people at end of life and their families and carers through illness, dying, death and bereavement.

“Historically, the role of caring for people at end of life and their families was located in the community. Medical advances have seen the growth of palliative care services which have contributed to major improvements in medical care and quality of life for people at end of life. However, these medical advances have been accompanied by a reduction in community skills and activity in this area. While families continue to provide care for people at end of life, they often do so with limited or no support from their local community.

“They are communities where “citizens are encouraged to engage and become more informed about death, dying and care and adapt their practices and behaviour to be active in supporting those at end of life.” Compassionate communities usually involve people in the same geographic location, but they may also involve families, neighbourhoods, faith groups, local organisations, workplaces.”

Is it up to the Government to make this work?

If the aged care reforms’ new palliative care support payment is going to be effective, communities are going to have to step up to facilitate their implementation. We can’t rely on understaffed nursing organisations to provide the practical care and family support that will be needed in the home. Whether there’s room for, or even an acknowledgment of, the role of death doulas is to be seen as well.

The support payment is an encouraging first theoretical step. I await the details and practicalities of its implementation. I am very much Dying To Know. We all are.

And if you do want to die at home, let your family know. You can also write down your plans and wishes in The Bottom Drawer Book: the after death action plan.