As the Morrison government weighs its full response to the findings of the aged care royal commission, evidence has emerged of doctors’ complicity in gaming the system to promote the use of powerful antipsychotic drugs in nursing homes — despite warnings that the drugs, designed to treat schizophrenia, should not be used for patients with dementia.
Documents provided to Inq show that an elderly woman at a dementia facility was falsely diagnosed as having schizophrenia — a diagnosis which made it possible to prescribe the powerful antipsychotic drug olanzapine at a discount, although it was then used to treat her dementia symptoms.
Olanzapine has been listed on Australia’s Pharmaceutical Benefits Scheme (PBS), making it eligible for large taxpayer-funded subsidies — but only if it is used to treat schizophrenia. It does not have PBS approval for dementia-related psychosis although some doctors prescribe it “offline” (without going through the PBS and against its official recommended use).
The woman’s daughter, Marcia Church, has told Inq she had lived for years in the mistaken belief that her mother, Carole, had schizophrenia after seeing her mother’s medical records.
“I clearly recall my horror reading her discharge papers [from another facility] stating she had been diagnosed with schizophrenia, which had never been mentioned by geriatricians in conversation with me,” she said.
Church has provided her mother’s medical records which show that Carole, then in her mid 70s, was diagnosed with both dementia and schizophrenia, among other conditions. The diagnosis appears on discharge forms, along with a record of olanzapine as a prescribed drug.
Church had been shocked by the news of schizophrenia in the family and was terrified she and other members of the family might have inherited the condition. The spectre of it being a hereditary illness “tormented” her, she says.
Church recalls finally raising the issue with her mother’s specialist who said she had not diagnosed her mother with schizophrenia.
“The doctor’s reply floored me,” Church said.
Who made the diagnosis is unclear — it may have been made at a stage before the woman’s doctor inherited the case.
Opaque it might be, but it set Church off on a mission to find the truth.
“I vividly recall researching my family tree and spending hundreds of hours looking for evidence of anyone else who may have had schizophrenia, and finding none,” she said.
She remains adamant that her mother did not have schizophrenia and that no one had ever informed her of the diagnosis.
The schizophrenia diagnosis appears to have been on Carole’s medical records for more than three years, beginning in 2007.
It coincides with the time that large pharmaceutical companies were seeking to expand the use of drugs originally intended for schizophrenia by capitalising on the growing numbers of elderly nursing home patients with dementia and its accompanying psychosis.
As we reported in our two-part investigation last week, antipsychotic drugs took hold in Australian nursing homes from the early 2000s despite a steady drumbeat of warnings from medical researchers about potential harm to the elderly.
In the United States three pharmaceutical companies — Johnson & Johnson, Eli Lilly and AstraZeneca — were all prosecuted for promoting their schizophrenia drugs for use with the aged despite warnings from the Food and Drug Administration (FDA).
The true extent of fraudulent prescribing — and the accompanying drain on public money — is unknown. The PBS has no power to check on the honesty of prescribing. And while the rubbery prescribing of antipsychotics has been reported in medical journals, the amount involved has rarely been quantified.
In a 2017 survey of 177 GPs quoted in The Conversation, 91% of doctors said they had been pressured to prescribe psychotropic medications (which include antipsychotics) by nursing home staff. They had often prescribed these drugs due to a lack of staff and resources to deal with potentially disruptive and dangerous dementia symptoms.
In an emailed response the federal Health Department said it could not comment on Marcia Church’s individual case. It pointed to changes made from 2019 “to make it clear the use of chemical restraint must be a last resort”.
It said it was taking steps as a result of the royal commission, including establishing the role of senior restraint practitioner in the Aged Care Quality and Safety Commission to run an education campaign for the sector and general practitioners on minimising the use of restraint.
Church said: “These past two years of the royal commission into aged care have awakened all the traumas, abuse and suffering my mum endured during her ‘care’ in the dementia unit, along with all the others too.”
She hopes doctors and other medical professionals “stop lying” about their prescribing.