I spoke up about chemical restraint in aged care. The doctor fired us.
Pictured: Denise Mills (right) with her aunt.
From the moment my aunt moved into her aged care home, staff spoke about medications to fix her "difficult behaviours". Given the chemical restraint legislation, I couldn’t understand it.
My aunt was mostly quite happy. I would visit daily to take her to the park, since she was in a locked ward with no outdoor access. She would read number plates, smile at babies, and we’d sing her favourite songs together.
But alone at the facility she could become quite upset, particularly on days when she felt bored, unseen, or overwhelmed by excessive noise. “Where’s my mum and dad!” she’d shout, crying and opening doors to other residents’ rooms. Understandably, this was quite challenging for staff and residents.
Behavioural and psychological symptoms of dementia such as crying, agitation, and wandering occur in up to 90% of people with dementia in residential care.
Dementia-specific drugs may mildly reduce BPSD symptoms for some people, but they caused my aunt significant side effects and worsened her mood. Her geriatrician said she should stop taking them. The only other option was psychotropics, which he advised weren’t appropriate.
Using psychotropics such as opioids, antipsychotics, and antidepressants off-label with a primary purpose of altering behaviour is known as chemical restraint. Under Australian law, chemical restraint is a last resort, after a genuine attempt at non-drug strategies has failed, and only if the person is at risk of harm to themselves or others.
These protections are in place for good reason. Psychotropics have limited evidence of efficacy for changing unwanted behaviours and they come with significant risks, including psychological distress, functional decline, falls, strokes and death. As her geriatrician told me when discussing the use of antipsychotics for BPSD: “If they worked well, they might actually be worth the risks.”
My aunt’s facility is tended to by visiting registrars — fully trained doctors undertaking supervised specialty training — who rotate every year or so. It’s a common setup, but it’s problematic for people who need consistency of care.
That said, the first two registrars were excellent. They were well aware that BPSD is often a response to unmet needs. They were confident in challenging staff requests for behaviour-altering medications, and suggested staff provide gentle activities and look at reducing triggers.
The new doctor was quite different. After his first visit, he rang to advise he was “happy to prescribe a low dose of antipsychotic”. He didn’t seek my input about her moods as someone who visited daily. When I hesitated, he became annoyed. “It’s only a low dose!” he repeated several times.
In line with aged care legislation, I suggested we look at her triggers and try non-drug options first, to which he replied: “I don’t control the aged care staff.”
Later that day he called back to say he was happy to put her on an antidepressant, since she had a “consistently low mood”. While antidepressants are very important for people who have depression (including people who are living with dementia), I explained that her baseline was quite cheery.
He responded by asking what my occupation is.
Since I wasn’t agreeing to drugs of chemical restraint and her regular geriatrician had a twelve-month wait list, the doctor referred my aunt to a geriatric psychiatrist. The psychiatrist visited twice and stated that in his opinion, she didn’t have depression.
After that, the registrar cut communication. He was no longer pushing for psychotropics, but he made changes to her regular medications without consulting me, leaving me unable to ask questions or discuss side effects.
With no other way to contact him, I emailed asking that he speak to me as her enduring guardian about non-urgent changes to her regular medications. I waited ten days for a response before following up, which upset him.
He called and said that he had “over twenty emails” over the weekend and I shouldn’t expect an immediate response.
After reiterating that I wanted him to discuss non-urgent medication changes with me, he advised that I could always speak to the facility nurses. He added that he has over ten years training and certainly doesn’t need to consult with me before making decisions.
The fact that he thought it was about consulting with me, rather than a collaborative approach to her care, was highly concerning. This is when I called him arrogant. I’m not sure I regret it.
Days later, I received a letter advising that my aunt had two weeks to find a new doctor due to a “breakdown of the doctor-enduring guardian relationship”. Unless I could find another doctor who would visit the facility, this effectively meant she had no medical care.
Luckily, one of the previous registrars — who now works at a different practice — was sympathetic to the situation and agreed to take my aunt as a client. She travels to the facility especially to see her, and I’m immensely grateful.
The crux of the story isn’t one bad doctor; it's a bad system. A system that punishes speaking out, and had done so well before I responded inappropriately.
Currently, there’s no mandated dementia-specific training for staff working in aged care. Large ward sizes with few staff make the individualised approach required by legislation even more challenging.
This whole experience has made me wonder: how many doctors knowingly ignore chemical restraint laws to appease aged care staff who are struggling within a broken system? How many avoidable fractures, strokes and deaths result?
Resources:
For doctors: With the support of the Department of Health, Dementia Support Australia has launched the GP Advice Service offering direct email access to psychogeriatricians and geriatricians when treating a patient with Behaviours and Psychological Symptoms of Dementia (BPSD).
For families: This article on Dementia Australia’s website, ‘Can Aged Care Providers Use Chemical Restraint?’ provides a good overview of chemical restraint. See also our earlier article on the Dementia Lens website, ‘Chemical Restraint Is Still Rampant. The New Aged Care Act Won’t Change That.'
