Alzheimer’s Australia have invited me to Hobart next week for their national conference. I’ll be sitting on a panel discussing the use of antipsychotics in dementia. I’m
excited nervous shitting myself, as it’s way out of my league. Luckily, I’ve not been invited as a doctor — since stopping work large chunks of my medical knowledge have evaporated — but as a consumer, because of my father’s experience with the disease. And because I complained…
Towards the end of 2010, after Alzheimer’s had been chipping away at his brain for seven years, Dad reached the limit of his reserves and started down the slippery slope of advanced dementia. He became agitated, particularly of a night, and began sleeping for short bursts only, surviving on an hour or two of sleep each night. He started low dose Risperidone, an antipsychotic, which only seemed to exacerbate his distress and agitation.
Shortly after that, we had to find urgent care for my father. Unfortunately, there
isn’t much is nothing in the way of emergency care for people with dementia in Launceston, so Dad was admitted to a General Medical ward at the Launceston General Hospital. Before he was even wheeled off to the ward, whilst sitting calmly in a wheelchair, a ‘posey’ restraint vest was applied and when he reached the ward, he was tied to the bed ‘for his safety’.
Poor Dad! He’d been whisked out of his familiar environment, then strapped to a bed so he couldn’t even sit up, let alone get out and walk, and he had no idea why. Naturally, he became distressed — he was frightened. He was crying and calling out, shaking the bed, and trying to climb out. So, he was injected with clonazepam, midazolam and haloperidol to sedate him, along with oral quetiapine and risperidone. He became groggy and even more disoriented and confused. Within twenty-four hours of admission, he was unable to drink or urinate, and had an IV cannula for fluids and a catheter. Meanwhile, the reason for his admission – his sleep disturbance – and his disorientation and immobility, the cause of his agitation, remained unaddressed.
When I trained in the early 1990s, we were warned of the vicious cycle of physical restraint causing distress and agitation, thus requiring sedation, causing increased disorientation and confusion, which in turn causes more distress and agitation, requiring more sedation, and so on. I couldn’t believe that two decades later this regimen was still in use.
The thing was, Dad was still physically strong. He was only seventy and in otherwise good health. The only organ failing him was his brain. He’d lost all filters on his behaviour, so was becoming aggressive when distressed. At one stage, after the restraint had been removed, he was walking down the corridor, naked and yelling, frightening the other patients on the ward. The bottom line was, he should never have been on a general medical ward in the first place.
At the time, I spoke with every geriatrician I knew in Perth — no less than four — and all were appalled that restraints were still being used in Launceston. Restraint of the elderly (including those with dementia) is against the policy of Western Australian hospitals as it is considered dangerous and unethical. Instead of restraint, patients are admitted to secure wards, with one-on-one carers and 24-hour surveillance. They can roam at all hours of the day and night.
The Australian Society for Geriatric Medicine has a Position Statement on the use of physical restraints on their website. Part of it says:
• The use of physical restraint in both acute and long-term care settings is not supported by evidence of efficacy or safety. Thus, the decision to use an intervention of little proven benefit but which has the potential to cause harm has clear ethical, legal and clinical implications;
• There is a growing body of evidence regarding the negative consequences of restraint use including physical, psychological and ethical problems; and,
• The use of physical restraints should not be a substitute for inadequate staffing, surveillance, or unsuitable environment for the individual’s appropriate care.
My husband and I began phoning the hospital and made ourselves very unpopular with staff. We were repeatedly told the restraint was necessary for Dad’s safety, and that they didn’t have the staff to babysit him.
Eventually, after much campaigning and argument, the restraint was removed, following which we made a formal complaint to the Medical Director of the hospital. He replied that ‘the use of the physical restraint was appropriate in the clinical circumstances’, that ‘the hospital ward was not designed to safely manage a wandering dementia patient’, and then criticised my husband and me for ‘harassing’ the staff.
I couldn’t drop it. I wrote back to the Medical Director and then to the Health Complaints Commissioner, who, fortunately, decided to investigate. In December 2012 we received his Final Report. He concluded:
• that the hospital was not able to adequately manage a dementia patient exhibiting difficult behaviours;
• that they tried to stop the behaviour rather than look for or deal with the underlying cause;
• that the use of the physical restraint exacerbated Dad’s behaviour and contributed to his decline;
• that the restraint was not used as a ‘last resort’ or in ‘exceptional circumstances’ and contributed to his behaviour;
• that there is no dedicated ward for patients with behaviour that is difficult to manage in a general ward setting.
The Commissioner made a number of recommendations:
• that the hospital implement a programme of education for staff at all levels, particularly nursing staff;
• that there be a suitable ward set up for patients with dementia or a delirium, with security so that wandering can be tolerated, even encouraged;
• that all other appropriate and less restrictive measures must be attempted prior to the application of a physical restraint.
The Launceston General Hospital is now working with the Commissioner to implement these recommendations, and the Commissioner is confident there will be changes. This pleases me and makes all the hassle and angst worthwhile.
My father, like so many dementia sufferers, was a kind, gentle man, who’d been an obedient, law-abiding citizen. He would have been embarrassed by his actions, and upset that he’d frightened people. His behaviour was not him, it was his illness, and he deserved better treatment. Incidentally, he moved to Perth soon after this, and was treated appropriately and well here – not a physical restraint in sight.
So, that’s why I’ve been invited to the Alzheimer’s Australia Conference next week and I feel good, knowing I’ve helped make a difference.
Good on you Louise.
Thanks, Charles. It’s probably the first time a complaint of mine has actually resulted in change!
Great! If your conference presentation is as powerful as this post, you’ll continue to make a positive difference. Thanks for sharing this story.
Thanks, Iris. Funnily enough, I was just thinking of you. I’m writing a review of ‘Elsewhere in Success’ to post on this blog! I’ve taken the plunge and joined the Australian Women Writers Challenge — at the Franklin level! My first book review is yours. Watch this space…
Bravo Louise. You fought a brave fight and in the end won. It is a victory that will help so many who have Alzheimer’s or other dementia diagnoses. It is a fitting tribute to your father. One person (two with your husband’s support) CAN make a difference, you are living proof. The conference is lucky to have you as a panel member. I know you will be amazing.
Your post takes me back to the mid-1960’s. I was a Stellateen, a teen volunteer at Stella Maris, a lovely Catholic retirement home that had a medical wing. It was a private institution run by the Sisters of Mercy and backed by the diocese of Baltimore. I remember the posey restraints that were used for wheelchair patients to keep them from falling out of their chairs. I recall the patients sleeping while their bodies strained against the heavy cotton of the restraints. At the time I thought the patients were napping and this was a part of growing old. Although some of the residents had strokes others (we were told) were senile. Psychiatric meds were pretty new back then, and I suspect the residents were on heavy duty tranquilizers. No one was ever aggressive or irritable. Perhaps that was part of the admissions process, to filter out aggressive patients. There was a beauty salon and recreational therapist on premises. I remember some red and pink fingernails and lots of permed hair. Funny thing is, except for Father Ahern, a priest with Parkinson’s, there were no men. At least there wasn’t any on the wing that was open to the teens. I recall, too, hearing the Angelus as I wheeled the patients to the solarium.
It was, I suspect, state of the art for it’s time. It’s still in existence. I hope it is still state of the art like the facilities you describe.
Congratulations again. It is a well-deserved honor.
Thanks, Penny. I hope I can do it justice. I’m not really a public speaker, you see…
I loved reading your recollections of the Stella Maris retirement home from when you were a teen. I helped out at a nursing home as a student, and so did my husband. Like you, we noticed similar things about the residents. I wonder now, too, how many of the residents were merely sedated…
Dear Louise, Thank you so much for sharing your story. You are an inspirational role model for me. Sarah xxxx
Sarah, if ever there’s an inspirational role model, you’re it! With your orthopaedics, your horses and you’re soon-to-be-finished plane… Keep doing what you’re doing! xx
Your battle to ensure that your Dad was treated with dignity and care is inspiring Louise. The very fact that you are now able to speak as a consumer at a national conference supports the notion that speaking out and not giving up on important issues is worth it. Well done. I am sure that your father would be so proud of you (again!). The example you are setting for your own children will ensure that his spirit, shown in your actions, will live on, and that the world will continue to be a better place because you are in it.
I feel humbled by your words, T. All I can say is, it wasn’t easy. I was particularly upset by the first letter from the Medical Director of the LGH, as he fobbed us off and was highly critical of the way we had ‘harassed’ the ward staff and ‘interfered’ with patient management. I was tempted to drop it because I wasn’t sure I could cope with the personal criticism or with being fobbed off again. But then, I got over it, re-coated myself with Teflon, and pushed on, knowing the research supported us. I’m really glad I did — I couldn’t have hoped for a better outcome. Really, though, it just gives dementia patients in Launceston the same standard of care as everyone else in this country. It wasn’t fair that they were missing out.