This year I have interviewed dozens of people who have told me how aged care facilities drugged their parents, grandparents, husbands, wives and neighbours. We’d sit down in someone’s home, or in an advocacy group’s meeting space, or in a coffee shop, and I listened as people shared the trauma of learning what was happening to their loved ones and how they very often felt powerless to stop it.
For years, Australia had no law or rules to stop the practice of controlling people’s behaviour with drugs without a medical purpose, a practice known as chemical restraint. In January the government announced it would prepare a new regulation, purportedly to minimise the use of chemical restraint. But we challenged the regulation in May on the grounds that it did not protect older people’s human rights to informed consent, among other rights. In July, a parliamentary committee on human rights announced an inquiry into the regulation’s compliance with Australia’s international human rights obligations.
Last week, the committee released its report on the regulation. It states: “Considerable concerns have been raised with the committee that rather than minimising the use of restraints, the instrument in fact encourages an increase in their use.” And notes that, “Australia has obligations under international human rights law to take steps to reduce and eliminate such practices”. It says it considers that where restraint without informed consent is used it “engages and may limit a number of human rights, including the absolute prohibition on torture, cruel, inhuman or degrading treatment or punishment; the rights to health, privacy and liberty; and the right to equality and non-discrimination and rights of persons with disabilities".
However, it does not recommend that the regulation be disallowed. In fact, it offers weak recommendations that do not come close to addressing the problems its own inquiry set out. Labor and Greens party members filed a dissenting report, calling for the Senate’s disallowance of the regulation. Given the attention to this issue, and the Royal Commission’s call for urgent action on chemical restraint, this is a missed opportunity to call for real reform.
I’ve seen firsthand the problems that result when aged care facilities give drugs to older people with dementia to control their behaviour and not for any medical purpose. Many of these drugs are dangerous and not approved for this use.
People told me that someone they loved with dementia had walked into an aged care facility and just days later was sleeping all the time. They said their loved ones were suddenly unable to stay awake, eat a meal, or have a conversation. They described finding chemists’ receipts with unfamiliar drug names, despite having power of attorney to give informed consent for all medical treatment. They talked about learning that their loved ones were being chemically restrained (or euphemistically “given something to settle her”) for things as innocuous as walking in the halls, being restless in bed at night, or pushing a call bell for help to use the toilet.
They felt guilty and angry for trusting people who were hurting, not helping, their loved ones. Many didn’t know how to protect their loved ones. They faced intimidation and threats and unresolved complaints. They rarely discuss their pain. It is shrouded by what is an unthinkable scenario of a loved one moving into an aged care facility; it is made uncertain by deference to medical professionals; and it is obscured by grief and loss if a loved one passes away under these conditions.
In all, we documented that people with dementia were chemically restrained in 35 aged care facilities in Queensland, New South Wales and Victoria. The Royal Commission into Aged Care Quality and Safety’s interim report, released on October 31, echoed our findings, calling on the government to respond to the use of chemical restraint in aged care facilities within one year.
This committee’s report is an opportunity for the government to embark on real reform but these recommendations miss the mark. Minister for Aged Care Richard Colbeck and Minister for Health Greg Hunt should make amendments to the regulation to make it right. In aged care facilities, the government should prohibit the practice of restraint and promote the right support instead. This means having aged care workers who are trained in dementia care and wherever possible providing individualised support to people. It’s crucial for the government to require such training as well as to ensure a minimum number of staff so that older people with dementia have a chance to live their lives, rather than sleep them away.
Giving people choice to stay connected and the support they need to eat a meal, bathe, or spend time with loved ones, should not be controversial. It’s the bare minimum any of us need to lead a dignified life.