Hazel Neal spent her 99 years of life in the town of Orange, on the New South Wales Central Tablelands.
She lived for her family, loved gardening, and ran a successful frock shop in the centre of town.
But her death haunts her granddaughter.
"She was literally crawling around the floor — she had carpet burns all over her body," Suzanne Kerwick said.
"Our family tried and tried so many times to get medical treatment for her, and the only treatment that she received was antipsychotic medication.
"It's my opinion that this medication was used as a chemical restraint, because it kept her quiet, and the dose was increased."
Ms Neal died from septic shock and renal failure in December 2020 at the Ascott Gardens aged care home, after a series of urinary tract infections.
Her family said that only weeks earlier, the much-loved great-grandmother had been making plans to celebrate her 100th birthday, and was looking forward to getting a letter from the Queen.
The NSW Health Care Complaints Commission (HCCC) found "deficiencies in relation to the medication and review aspects" of the care she was offered and "formal comments" were issued to the doctor overseeing Ms Neal's care at the time of her death.
The commission found there was no discussion among staff treating Ms Neal "about whether to transfer [her] to hospital, give IV fluids, or focus on active versus palliative treatment".
The complaints body found she was instead prescribed high doses of psychotropic medication.
"This was not ideal as it was clear her symptoms were worsening/progressive at that stage," it said.
In December the Aged Care Quality and Safety Commission (ACQSC) published the results of an audit into Ascott Gardens that found the home was noncompliant in some of its care standards.
The ABC understands the HCCC complaint prompted the audit.
Aged care facilities are legally required to try other strategies before chemical restraint is used to manage a resident, but the ACQSC found gaps in the way the home used "restrictive practices".
"Some psychotropic medication use which may constitute chemical restraint was not identified as such," it found.
"Care documents reviewed identified that as required psychotropic medication was not consistently used as a last resort to manage behaviours after non-pharmacological interventions were trialled and evaluated as unsuccessful."
The commission also found the home had failed in its pain management of residents, including at the end of one person's life.
Home denies medication used for restraint
The home is run by the United Protestant Association (UPA), a major aged care provider in NSW that is responsible for almost 50 facilities, mainly in regional areas.
The ABC sent a list of detailed questions to the group, but a representative was unavailable for an interview.
In a statement, the provider expressed "heartfelt condolences to this family for the loss of their grandmother".
The home said it had conducted an internal review of practices in response to the audit, which included "ensuring documentation of the use of non-pharmacological interventions".
"Ascott Gardens does not have prescribing rights and any medications administered to Mrs Neal were prescribed by her GP," the statement said.
The home also said Mrs Neal's medication "was prescribed by her GP for medical reasons and not for restraint reasons".
The HCCC review findings, seen by the ABC, note that the doctor prescribing her medication in the days prior to her death was "not Ms Neal's regular GP".
The home said an ACQSC review given to the provider specifically in relation to Ms Neal in November "makes no mention of inappropriate use of psychotropic medications nor clinical restraint in relation to her care".
The ABC asked the home for a copy of that review but did not receive a response.
Despite the regulator's findings that the home was noncompliant, Ascott Gardens claims that to its knowledge no adverse findings had been made against it or its staff in [Ms Neal's] case.
The home said the matter was "extensively investigated" and that "the case" had "been closed".
Ms Kerwick said there was not enough value placed on the elderly and that she wanted an apology from Ascott Gardens for the treatment her grandmother received before her death.
"They're not respected," she said.
"There's no dignity.
'A human rights issue'
Chemical restraint was a key focus of the aged care royal commission.
The inquiry heard up to 40 per cent of residents in some facilities were on psychotropic medication and found there was "a clear overuse of … chemical restraint in residential aged care".
It called for "urgent reforms … to protect older people from unnecessary, and potentially harmful, physical and chemical restraints".
Late last year the Pharmaceutical Benefits Advisory Committee (PBAC) knocked back a recommendation from the inquiry to require antipsychotics to be prescribed by specialists, citing "substantial risk of unintended consequences".
The PBAC told the ABC these included "safety issues for the patient, other residents at the facility and staff if there is a delay in access" to the drugs.
University of Tasmania lecturer Juanita Breen, who was called as an expert witness during the royal commission, said she saw the matter as a "human rights issue".
"It is about quality of life and older people, even at the end phase of their life, do deserve to have the best life they can," she said.
Dr Breen said her research, conducted over more than a decade, had revealed an enormous variation in the rates of psychotropic medication use in aged care homes she had interviewed.
But she said it was impossible to know exactly how widely the medication was used nationally.
"We know more reliably what the use is in other countries, because they report this data," Dr Breen said.
New data to reveal extent of use
Up until 2021 there was no requirement for providers to report publicly on the extent to which psychotropic drugs were prescribed to residents and the royal commission heard "many homes were not aware of their own psychotropic use".
In March data from the Australian Institute of Health and Welfare regarding the percentage of aged care residents on psychotropic medication will be published for the first time.
"What I really hope it highlights is this variation in practice, where people can benchmark their performance," Dr Breen said.
She said the drugs were classed as high-risk and should only be used for sedation with consent and as a last resort.
A spokesman for the Minister for Senior Australians and Aged Care Services, Richard Colbeck, said the government had announced significant work to minimise the use of physical and chemical restraints.
The spokesman said investment in pharmacy programs had been increased by $100 million to $1.2 billion over five years.
"New restrictive practice measures, which came into effect on July 1, 2021, are aimed at ensuring the wellbeing of vulnerable Australians receiving care," the spokesman said.
"The act will significantly strengthen regulation for the use of restrictive practices, including chemical and physical restraint, as a last resort."
