When Jo Durst, 92, became too frail to wash or get out of bed, her family thought it was time for her to move into an aged care home.
It was earlier this year and the was spreading rapidly through facilities across the state, resulting in a spike in deaths and harsh visitor restrictions.
Durst’s son, Jim Edwards, called several providers, but mostly never heard back. Those that responded said they couldn’t accept new clients due to staff shortages.
So, like many Victorian families faced with similar barriers during the pandemic, Edwards and his family decided to take care of his mother themselves.
We just decided that it wasn’t a good time for her to go into aged care, Edwards said. But it was also a real struggle to keep her at home.
Victorian families and friends are caring for their dying loved ones at home at an unprecedented scale, as elderly people suffering excruciating pain and severe disease are increasingly avoiding aged care facilities and hospitals for end-of-life care.
Many fear they will catch the virus or die alone due to strict visitor protocols, finding themselves surrounded by unfamiliar people clad in gowns, gloves and masks.
Hospital inpatient units say palliative patients are presenting to hospitals far later in their terminal phase and spending an average of four days in hospital compared with 10 days pre-pandemic.
Meanwhile, demand for at-home community palliative care services has skyrocketed, with some providers warning they are simply unable to keep up, while families say they are ill-equipped to manage the complex medical care that is required.
Palliative Care South East, a not-for-profit agency largely funded by the state government, has reported a 60 per cent increased in demand since the start of the pandemic.
But Kelly Rogerson, chief executive of the agency overseeing one-third of all at-home community palliative care services, warned that funding for the sector hasn’t changed in response to that.
After-hours support often serves as a postcode lottery, she said, as palliative support simply wasn’t available to many outer-suburban areas due to a lack of resources.
If you live in Cranbourne, you’ll get a different level of care done [than] if you live in Box Hill, Rogerson said. It shouldn’t matter where you live; you should get consistent services across the board.
In this month’s state budget, the Victorian government included an additional $32 million to deal with the explosion in demand and expand services in regional and rural Victoria.
But Rogerson said community palliative agencies can’t get any detail on how much they would each receive and are yet to receive the funds.
The level of demand during the pandemic has forced the agency to cut back on visits as it prioritises the most acute patients and increases tele-healthcare.
Veronica Jamison, chief executive of aged care provider Shepparton Villages, agreed that more people were opting to stay at home as they approached the end of their life during the pandemic.
The Royal Commission into Aged Care Quality and Safety exposed horrendous standards of care that damaged the sector’s reputation, leading to a decrease in community confidence in the aged care system overall, Jamison said.
The provider faced a marked decrease in admissions after they couldn’t admit anyone earlier this year due to the spread of Omicron. The operator’s 343 beds are now 85 per cent full, compared with 90 per cent pre-pandemic.
Palliative Care Victoria chief executive Violet Platt said families deciding to take care of dying loved ones often become overwhelmed with the demands of the task. The care requires 24/7 support, while many families lacked nursing skills or the appropriate equipment.
You never sleep properly because you’re always listening out for them, Platt said.
Some people may have catheters and emptying a catheter is not something everybody’s done. There are hygiene needs and keeping the mouth clean can be difficult, especially when someone’s not worked in health care. Many families want to do it and do it really well, but there is sheer exhaustion, Platt said.
And then the person who’s dying often doesn’t want to be a burden as well, so they may not ask for as many things because they want their family to rest.
Jo Durst died in March. In the six months leading up to her passing, her family provided full-time care at her home in Pearcedale, about 50 kilometres southeast of Melbourne.
Helping Durst move around her tiny home was backbreaking work, Edwards said, but other difficult tasks included managing complex pain relief treatment, washing, feeding and dealing with her continence issues.
Durst spent long periods in bed because moving the shortest distance left her breathless. But the lack of movement also created terrible body aches.
It was very physically and emotionally draining, Edwards said.
It was absolutely distressing to see her struggling like that, and with no quality of life. It was extremely difficult.
A Victorian government spokesman it had invested more than $160 million since 2016 to improve and expand access to palliative care, including home-based care, hospital care and support for those who may choose to spend their last weeks and days at home with their family and close friends.
It’s why the recent budget included a $32 million package to strengthen palliative care – giving more Victorians access to palliative care in the home, allowing us to expand services in regional Victoria and scaling up our advice services to available 24/7 for families and carers.
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