Leah* is a palliative patient who lives independently, but her options for respite care when she needs it are non-existent.
The 66-year-old's medical history can only be described as horrific.
She was diagnosed with an inflammatory bowel disease at the age of 19 and lost all of her large bowel in her early 20s.
Leah has endured around 130 operations since, including one where she woke up during surgery.
Eight years ago she had all but about a fifth of her small bowel removed.
"I shouldn't be alive," Leah said.
"I don't have enough bowel to live on, yet here I am."
She can no longer eat food and survives on hospital formula and Hydralyte.
"Often I don't absorb my formula — by the time I get to the bottom of the glass, the fluid has already gone through me."
On special occasions, Leah will eat a small amount of food — a piece of fish or some ice cream for energy — but the risk of a bowel obstruction is high.
She describes her life as "pretty awful" due to the extreme pain she experiences caused by scar tissue from numerous surgeries.
"Ten years ago it took my surgeon three hours just to cut through the adhesions," she said.
"I am in so much pain in the morning, I am unable to function."
Leah needs short-acting pain medication every four hours or so "to give myself three good hours during the afternoon when I can walk my dog."
"My dear dog has been abandoned once, I am doing my best to see him out.
"He is 10 now and I'm seriously doubting I can do that.
"Everything is worked around pain medication."
Forced to care for herself
When Leah had septicaemia last year and was discharged from hospital she sought respite care at an aged care facility, which she is entitled to as part of her aged care package.
But she was shocked to be told that there would not be enough nurses on duty to dispense her pain medication on a four-hourly basis.
"I was pretty upset because it was considered urgent by the people who assessed me," Leah said.
Unable to survive without pain medication, Leah had no choice but to stay home and look after herself.
"I'd want euthanasia [without any pain medication], as the pain would be intolerable," she said.
"The main reason I wanted to speak is there are a lot of people in nursing homes who aren't getting their pain relief and that really upsets me because I know what it means."
'What we were doing was illegal': Nurses stretched to the limit
Kate* worked as a registered nurse in several aged care facilities for about two and a half years.
She said there simply were not enough staff employed to deliver medication on time.
"We were screaming out for extra help," she said.
She said a registered nurse and an enrolled nurse were needed to administer narcotics.
She said because registered nurses were more expensive to employ, she would often be the only one on duty for 140 residents.
Kate said she would spend her shift running between residents.
"It would be impossible to administer medications like … morphine or Endone for pain relief on time," she said.
"You have to have two nurses sign that medication out of a very secure cabinet that is locked away.
"In aged care homes, we would get everyone's medications out and put them on a trolley because we didn't have time individually to go between that cupboard where the medications were held and the residents' room.
"The reason I am not telling my name is because what we were doing was illegal."
But she said there was not enough time or resources to follow the correct procedures.
Since leaving aged care she said she still feels terrible about the way she had to deliver medications to residents, particularly those with Parkinson's disease.
"You need to give those medications on time, they are extremely time-sensitive," she said.
"I would have … four residents all due with their Parkinson's med at the same time … that is physically impossible to do, so I would prioritise by who would complain the least.
"By the time I got to that fourth resident, sometimes they would be in bed and couldn't move.
"There was nothing else I could do. It breaks your heart."
Kate said aged care facilities should not be privatised and is calling for enforced staff ratios.
The workforce challenge
The federal government has recently conceded its mid-year target to staff aged care homes with one registered nurse 24/7 will not be met.
Aged and Community Care Providers Association (ACCPA) CEO Tom Symondson said workforce shortfalls were "extremely concerning".
He said across Australia the sector will be short 11,758 registered nurses for 2023–2024 and 26,902 for the following year, according to the Department of Health and Aged Care.
"The impact of the pandemic, the loss of workers from the sector and the financial strain being felt by a majority of aged care providers has meant the situation is even worse."
"Furthermore, not only do we need to address the current shortfall, we need to increase workforce supply into the future to meet growth in demand for aged care services," Mr Symondson said.
He said his organisation was working with the government to allow more flexibility for visa holders to work in aged care.
The sector is also campaigning for aged care nurses to receive salaries in line with their public hospital colleagues.
A 15 per cent pay increase on aged care award rates comes into effect mid-year.
Craig Gear from the Older Persons Advocacy Network said there were workforce challenges in aged care.
But he is hearing more examples of older people being unable to access respite or residential aged care.
"We don't think it's acceptable," he said.
"We think that a provider should be able to provide an appropriate level of clinical and nursing care including medication and administration."
"That's the right of all older people."
Respite options for palliative patients
Leah said palliative care respite should be available to anyone who needs it.
"What I need most are choices, I have very few."
Professor Samar Aoun is the Perron Institute Research Chair in Palliative Care at the University of Western Australia.
She said the aim should be to provide respite care for older palliative patients in aged care facilities.
"That allows the carers of older adults to have time to rest and look after their own needs for a while," she said.
It also should result in good quality generalist palliative care for the patient "and provision of timely symptom control medications".
But she said palliative care was not accessible to everyone and everywhere.
"If we are to have quality of life and quality of death, the community and palliative care services need to work in partnership."
She says there needs to be a rebuilding of "Compassionate Communities … a global movement that encourages social networks to play a much stronger role in supporting those at the end of life".
*Not their real names.
