Cyril is so sick of waiting, ‘death better than wait for aged care’

Cyril Tooze is the tragic face of the crisis in Australia’s home aged care system – sick, and so sick of waiting to receive any care that he would rather die peacefully on his own terms.

Independent MP Rebekha Sharkie with Cyril Tooze, 86, in hospital in Victor Harbor, South Australia.

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Cyril Tooze is the tragic face of the crisis in Australia’s home aged care system – sick, and so sick of waiting to receive any care that he would rather die peacefully on his own terms.

The 86-year-old Adelaide Hills man has unsurvivable heart and lung problems and no family to care for him in SA.

Mr Tooze is one of the 70,000 older Australians facing delays of more than a year to receive aged care at home, with people literally dying waiting to hear when their packages will be provided.

In January this year, Mr Tooze was approved for a Level 4 Home Care Package – the highest available care – but due to the backlog of demand, lack of funding and staffing shortfalls, no care has been provided.

Since then his health has deteriorated so badly that Mr Tooze, who stands at 183cm tall (6 foot), now weighs 42kg. He has shocking bruising to his face from a recent fall. He has had two procedures to drain fluid from his lungs but doctors cannot give him a third as it would end his life.

Like many older Australians missing out on care, Mr Tooze has been offered some support for respite care but cannot afford to use it as he would not be able to keep paying his rent. His only remaining family are his brother and niece but they live in Queensland.

Mr Tooze told The Australian he had now made the decision to die and had started the euthanasia process under SA’s Voluntary Assisted Dying laws.

“This is no life,” Mr Tooze said. “There is no dignity.”

“I am very sick now and won’t last long. I have started the process. You have to be passed by two doctors. I meet the criteria for the amount of time I have got left to live. The first doctor said yes. I am seeing the second one on the 26th.

“Save for some house cleaning I have not received any care despite being approved months ago. Speaking to you will not benefit me, but it might help the next person down the line. No-one should have to suffer like this.”

Mr Tooze’s case and others have been picked up by the independent member for Mayo Rebekha Sharkie, who told The Australian the Albanese Government had presided over an indefensible blowout in waiting times for home aged care.

Ms Sharkie pointed to this year’s Anglicare Australia’s ‘Life on the Wait List’ report showing that, as of this May, 68,109 people had been approved for a Home Care Package but were waiting up to 15 months for its allocation – more than double the number of people waiting a year earlier.

Aged Care Minister Anika Wells. Picture: NewsWire/Martin Ollman

Ms Sharkie has now written to the Aged Care Minister Anika Wells raising Mr Tooze’s case and that of other older people in her electorate desperate for care.

They include a 93-year-old woman who has been waiting eight months for a higher level care package and a 97-year-old woman whose case was marked “urgent” suffering two bad falls during a three-month wait for her assessment to be made.

Ms Sharkie visited Mr Tooze in hospital this week and told The Australian she could not recall being so upset by the treatment of one of her constituents.

“I feel like crying,” she said after her meeting.

“If Cyril’s story doesn’t shame the government to act I don’t know what will. Our elderly are dying on waitlists, no wonder there is a sense of hopelessness. They have been all but forgotten.

“The government said when they were in opposition they would but ‘care into aged care’. All I see in my community is waitlists have ballooned and a sense of despair from many older constituents that they will not receive care that will allow them to live in their own home where they so desperately want to be.

“For Cyril to feel the situation is so hopeless he has asked doctors at the hospital to commence VAD treatment … how appalling. What a failed system we have when a person feels they have no other option. The government must, as a matter of urgency, immediately release more packages.”

Ms Sharkie has been campaigning for several years on this issue and, as a potential balance of power MP in a future hung parliament, will make it a key condition of her support for minority government.

She commended the Morrison Government for responding to lengthy waiting lists and the recommendations of the Royal Commission into Aged Care Quality and Safety by funding an extra 40,000 Home Care Packages per year for each of the 2021-22 and 2022-23 financial years, 80,000 in total.

That reduced the waiting list and got waiting times for HCPs down to one to three months in early 2023.

Under the Albanese Government the 2023-24 Budget funded only 9500 extra packages, and the 2024-25 Budget an extra 24,100, with wait times now in the order of 12 to 15 months.

“Before this year’s Budget was announced I urged the government to commit to 40,000 additional packages per year, which is the amount the sector had identified as necessary to address the backlog,” Ms Sharkie told The Australian.

Ms Wells defended the operation of the system and said the extra packages funded in this year’s Budget had taken the level of support to a record high.

The Australian understands that Ms Wells received the letter from Ms Sharkie last week and that a departmental officer contacted Mr Tooze the following day to inquire as to his situation.

The minister is unable to comment on individual cases but The Australian understands there is an option to have such cases fast-tracked.

Despite an increase in Home Care Packages, waiting times have blown out. Picture: iStock

People assessed as having an urgent need for care, approved as a high priority, are typically being assigned their Home Care Package within one month.

However, as there can be many people entering and exiting the Home Care Package system every day, predicting wait times can be difficult.

High priority approvals are available where an assessor considers their client is at urgent and immediate risk in terms of their personal safety or at immediate risk of admission into residential care.

“The Albanese Government is committed to ensuring older people can remain independent in their homes for as long as possible, and to passing once in a generation Aged Care reforms,” a spokesperson for Ms Wells told The Australian.

“We want to ensure older Australians can access a Home Care Package more quickly, and that’s why the 2024-25 Budget included investment of $531.4 million to fund an extra 24,100 Home Care Packages.

“This will bring the number of people supported by Home Care packages to a record 300,000.

“People assessed as having an urgent need for care, approved as a high priority, are typically being assigned their Home Care Package within one month.”