55-year-old Catherine (Kate) Davis (pictured above) has told the Commission her mother Noeline Taylor was left in pain for hours while receiving palliative care in her ACT aged care facility because staff were not always on hand to provide pain relief.
Over 40 minutes, Ms Davis – who was her mother’s primary carer for around 20 years after her father died of a brain tumour aged 55 in 1991 – said her mother, a trained nurse and midwife, was diagnosed with paranoid schizophrenia shortly after Ms Davis’ younger brother was born.
In 2011, Mrs Davis entered residential care as a low-care resident when her schizophrenia morphed into dementia but her condition seriously deteriorated in late 2013 and she became very agitated, losing weight and verbally abusing staff.
But instead of recommending her mother see a geriatrician or psychiatrist (which she had in the past), Ms Davis says there was a period where an ambulance was called for her mother five times during the night in five weeks when she fell out of bed or staff couldn’t manage her behaviour.
“That was just a go-to mechanism for them to deal with the situation,” she told Senior Counsel Assisting Richard Knowles. “So, I would often get the phone call, your Mum’s been to hospital but she’s back again.”
“Do you think there might have been some benefits if there was some sort of hotline or telephone or contact to an experienced gerontic nurse who could assist with diagnosis of what was going on and how it might be addressed?” Mr Knowles asked.
“Yes, I do,” Ms Davis replied, “yes and someone who actually knew Mum because I think every case is an individual so it’s very difficult to put. That was always the case with Mum, she was always the square peg in a round hole.”
Finally, after a further hospital admission in March 2014, Mrs Davis was diagnosed with a brain tumour. Ms David said her mother, being a nurse, did not want medical intervention and the family opted to not proceed with any treatment.
However, Ms Davis said she now recognises the assistance provided by the facility to create her mother’s advanced care plan was “completely inadequate”.
“Towards the end there were plenty of interventions that were required for Mum to be comfortable, you know, catheters, bowel cleansing, that sort of thing to make sure that she was resting comfortably, and I don’t think I was aware of that at the time,” Ms Davis explained. “I just assumed medical intervention meant something invasive that would make Mum uncomfortable but in actual fact there are some that make patient comfortable so yes, that probably could have been explained a bit better to me.”
“Can I understand that, are you saying Ms Davis that you ticked no to medical interventions?” Commissioner Lynelle Briggs cut in.
“Correct,” agreed Ms Davis.
“Because you didn’t appreciate that they would include pain relief and various other treatments,” the Commissioner clarified.
“Correct,” said Ms Davis.
The family was then informed that as Mrs Davis was now considered a high-care resident, there were no beds available and she would need to move to another facility in July 2014. But Mrs Davis soon developed a sore on her nose from picking at it that became what Ms Davis labelled “literally a hole”.
It was only when palliative care nurse practitioner Nikki Johnston (also appearing in a panel today) was assigned to Mrs Davis – five to six months after her hospital discharge – that she recognised the picking as an indication of pain. Provided with pain medication, the wound healed.
Ms Davis added Ms Johnston also acted as a conduit between the family and the facility, explaining care options and securing items such as an air mattress and syringe driver for pain management.
In contrast, Ms David said the facility staff didn’t seem to understand that her mother was dying with some staff visibly distressed – or ignorant of her end-of-life stage.
“She hadn’t been out of her bed for weeks and they were still coming in leaving a cup of tea or biscuit,” Ms Davis recalled. “She must eat, no, she’s beyond the point of eating now, and this look of horror, it was like they were shocked she was dying.”
In one instance, her mother was also left without pain relief for three hours one night because there was only one Registered Nurse on duty between a number of the provider’s facilities.
“It seemed also the palliative care services filled in a gap and the aged care facility allowed that to happen they were filling in the gaps that they had, the inadequacies that the facility had were being met by somewhere else, but they just were not equipped,” Ms Davis said.
Her mother ended up being transferred to the local Clare Holland House hospice four days before her death on 16 August 2015 aged 83 which Ms Davis said provided the care and support she had expected.
Ms Davis says while her mother’s experience in residential care was good overall, she would like to see more staff and RNs and the role of palliative care in residential care and access to hospice care expanded.
“I think we all assume that a core business for an aged care business is death, but in my experience they were completely – it might be okay if you just passed away in your sleep but if you have any kind of extenuating or extended death they are just woefully ill-prepared,” she concluded.
A point the Commissioners seemed to take on board.
