Good morning everyone, and thank you to the Australian Commission on Safety and Quality
in Health Care for inviting me to join you for the launch of the Delirium Clinical Care
Standard and to contribute the consumer perspective about the impact of delirium on a person and
why this Clinical Care Standard is so important.
Every medical condition we know is about a person with an individual history, friends,
and family and a personal story.
The person in the centre of this story is my husband Michael, a healthy, fit, intelligent
man who had been a fitness trainer in the British Air Force before becoming a British
Trained Remedial Gymnast in Rehabilitation for people with disability.
He was an elite sportsman, had a love of life, and also for his family.
However, around the age of fifty-nine / sixty, Michael began to experience changes utmost
being that he became increasingly disengaged.
This was so unlike him.
Disengaged with us and with life.
Something was wrong.
We sought help.
After three misdiagnoses and six years, Michael was finally diagnosed with the younger onset
dementia.
He was then just sixty-six years old.
Eight years into the progression of his dementia, Michael had a temporary six month’s stay
in residential aged care.
During this period, he had several admissions to acute hospital care.
The first admission followed a collapse thought to be a stroke by the residential aged staff.
On admission to the hospital emergency department he was found to be in acute renal failure
with severe urinary retention.
The next night, he became extremely agitated and was trying to climb over the bed rails
and couldn't be controlled.
No one contacted us.
Someone judged to give him five times his normal dose of risperidone to quieten him
down.
He was rendered unconscious for five days.
At the end of his subsequent five weeks’ stay in the hospital he was discharged, but
had more noticeable changes in his cognitive capacity.
He was now incontinent and required an indwelling catheter.
A month later, following another collapse in residential care he was thought by the
staff to be in kidney failure.
They recommended to us palliative care.
He was very quiet, unresponsive to us, and withdrawn despite him being fine with us just
the previous evening prior to the fall.
We asked for him to be taken straight to the emergency department of a local teaching hospital.
On arrival, his admission was delayed by nearly an hour.
Michael was still very quiet, not communicating, unfocused, withdrawn.
Attention was prioritised by the ED staff for new arrivals who were in a more agitated
state.
So we waited.
When he was finally admitted he was found to have severe urinary retention as a result
of a blocked catheter tube.
During the subsequent six-week admission, it was decided to take surgery to alleviate
the necessity for his indwelling catheter which he kept trying to remove causing internal
damage.
Following the surgery, I asked to join him in the post-operative unit anticipating he
would be frightened in the unfamiliar environment and with aspects of the post-surgical care.
But I was not allowed in to be with him.
The next morning on visiting, I found him tied by his wrists and ankles to the bed rails,
because of his extreme agitation and distress.
The nurse sitting at the end of his bed writing [in his notes], picked up a role of bandage,
threw it at him and said, “Here, play with this!”
The fear on his face was palpable.
His final admission from residential care, a month later, followed an apparent fall which
left him unable to mobilise.
He was again very quiet, withdrawn, and unresponsive.
He was admitted to ED at our request and found to have two fractured ribs and an injured
swollen knee.
In his immobile, uncommunicative, and very unresponsive state the attending doctor described
him as similar to someone with ‘Locked-in’ syndrome.
After six weeks in the acute aged care unit he was for discharge.
But he had lost his mobility, had a compromised swallow reflex, further changes in cognition,
and was considered to be palliative.
We brought Michael home to care of him ourselves and where he died six months later.
Each of these acute hospital admissions for Michael as a person with dementia was distressing,
sometimes frightening for him, causing an exasperation of his symptoms and the acceleration
of his condition.
No one spoke with us about it at the time or explained Michael's sudden changes in behaviour.
But it's likely he was experiencing delirium.
As I now know people with dementia are at an increased risk of developing delirium during
a hospital admission.
With the introduction of this Delirium Clinical Care Standard a person like Michael will now
be immediately identified when presenting at hospital as being at risk of delirium.
He would be promptly assessed in consultation with his family and carer who would be asked
about any recent changes in his behaviour or thinking; they are the people who know
him.
His diagnosis would be discussed with the patient and family.
He would be offered interventions to either prevent delirium or treat the causes of his
delirium.
Care would be based on reducing his risk of falls or further injuries.
Non-pharmacological drug strategies would be the prioritised approach to relieving his
distress.
Including involving his family in this care and at discharge the family would be involved
in the development of an individualised care plan and provided with information about delirium
for ongoing care after leaving hospital.
This Delirium Clinical Care Standard will support consumers to know what health care
should be offered for delirium, and they can expect to make informed decisions in partnership
with their clinicians.
This is their right, we know as Australian health care consumers.
The Commission is to be congratulated for identifying delirium as the priority for the
development of the National Clinical Care Standard and supporting this development with
the establishment of the Delirium Clinical Care Standard working group expertly chaired
by Associate Professor Gideon Caplan who was wonderful and Co-Chaired by Dr Judy McCrow,
together with professional experts and also consumers.
This working group was fortunate in being supported in its work as well by the Commission's
hard working staff.
They were amazing.
As part of the Commission's Caring for Cognitive Impairment Campaign, this Delirium Clinical
Standard will support safe, high quality, and appropriate care for people with or at
risk of delirium.
So congratulations and thank you to everyone involved and not least of all to my husband
Michael, a courageous man who taught us so much about living with the impact of dementia,
and importantly, about the special care needs of people with delirium.
Thank you very much for listening.
* * * * * Question: Thank you, Joan.
Thank you so much.
It makes such a difference to have the patient and the carer perspective.
We really appreciate you coming forward in telling your story.
You touched on this, but what sort of difference would it have made do you think if these standards
were in place when you were dealing with this and Michael was dealing with this?
Answer: I think undoubtedly we would have been involved from the beginning.
With the clinical care staff, we would have been very much involved in contributing to
them understanding any particular changes that were different because we knew Michael
very, very well, and we knew on each of his presentations in the hospital as I described,
he was different.
There was something very wrong.
So that working together in partnership would have made a significant difference so there
would have been some welcome changes with these standards.
Question: Also to touch on your role as a carer, what difference would it have made
to you as a carer to have these standards in place?
Answer: It would have been an immense relief to understand what was actually happening
to Michael, to understand the seriousness of delirium and what it could bring to him,
and the changes it would make.
And it would have also helped us be involved much more helpfully, much more effectively
with the clinical care team in his care throughout the whole course of his admission.
I feel we would have been much more effective and much more understanding, so again the
standards would have been terrific in supporting this.
Thank you so much, Joan.