‘I’M SORRY I FAILED YOU, MUM’
Mackay teacher’s final days expose gap in palliative care
AS she described the helplessness she felt when she arrived to find her mum on death’s door in a Mackay nursing home, Fiona Jacobs said her mother’s palliative care was woeful.
In a submission to the Queensland Government’s inquiry into aged care, end-of-life and palliative care and voluntary assisted dying, she said she believed her mother, if she could have, would have chosen to end her life “before she succumbed to full blown dementia and such a terrible drawn out death”. “I am still profoundly affected by the way mum died, the effect on my health and relationship with my siblings has been irrevocably harmed,” she said.
THE daughter of a former Mackay teacher has described the “woeful” palliative care her mother received during her last 12 days of “suffering”, before her death in 2017.
The Queensland Parliamentary Health, Communities, Disability Services and Domestic and Family Violence Prevention Committee is conducting an inquiry into aged care, end-of-life and palliative care and voluntary assisted dying.
In her written submission to the inquiry, Fiona Jacobs described the pain of watching her “intelligent and gentle” mother’s health deteriorate following her father’s death.
“Her rheumatoid arthritis became worse and her osteoarthritis became so bad her ankles joints fused, leaving her with little movement left at all,” Ms Jacobs said.
“Her knees grated bone on bone and her hips and back were out of alignment due to her chronic ataxic gait.”
Despite her excruciating physical pain, Ms Jacobs said her mother only ever took Panadol for her symptoms.
“She still, however, had a sharp mind and always participated in interesting conversation until she started showing signs of dementia. This was mum’s worst nightmare,” she said.
Ms Jacobs’ mother was eventually sent to a Mackay nursing home to receive high care palliation.
The day after her mother arrived at the nursing home — her second stint at the facility — Ms Jacobs recalled the shock of receiving a teary phone call from her brother asking her to fly up to Mackay “because mum was dying”.
Ms Jacobs arrived at the nursing home the following day to find her mother “lying in a nappy with her shirt up around her head” and in distress.
“I asked the student nurse if she could go and find a nurse immediately. I stayed with mum to try and calm her down,” she said.
“Nothing worked — she had no idea who I was or where she was, she was nonverbal, clearly distressed and obviously suffering in pain.
“Being a registered nurse myself, I was used to caring for dying people, but mum’s distress shocked me deeply.”
Ms Jacobs said for the next three days, she fought her mother’s doctor, nursing staff and her siblings to maintain adequate relief for her.
She claimed at one point, she was told the nursing home had “run out of morphine” and was waiting for a pharmacy delivery.
She also claimed her mother continued to drift in and out of consciousness and went without fluid for five days prior to her death.
Since the experience, Ms Jacobs has become a passionate advocate for voluntary assisted dying.
To this day, she is still profoundly affected by the way her mother died, and her relationship with her siblings has been irrevocably damaged.
“I believe that every person has the right of choice and selfdetermination and that voluntary assisted dying is an adjunct to good palliative care and end of life care,” Ms Jacobs said.
“Currently, the quality of a person’s end of life care and experience is often dependent on the knowledge and skills of those professionals who are caring for them.
“There is a fundamental need for further education around the areas of not only palliative care, but also Advance Health Care Directives and end of life care as opposed to routine aged care.”
Palliative Care Queensland chief executive Shyla Mills said Queensland’s inquiry into aged care, end-of-life and palliative care and voluntary assisted dying had exposed eyeopening stories and gaps in palliative care.
Ms Mills said despite the great work of skilled staff working in palliative care in Mackay, the region’s sparse population and a lack of resources meant it was sometimes difficult for patients to access specialist care.
“We definitely think there needs to be improvement in that space. A lot of people in Mackay travel to Townsville or Brisbane for specialist care,” she said.
“Across Queensland, we have only 50 per cent of the recommended specialist palliative care doctors needed.”
Ms Mills said PCQ had a neutral position on the issue of voluntary assisted dying.
But she said the current gaps in palliative care and aged care across the state should not be the reason for introducing new legislation.
“We really need to look at the issues in the system. It’s likely only two per cent of the population will be eligible for voluntary assisted dying,” Ms Mills said.
“If people are looking at choice, really there’s not a choice for good palliative care across Queensland — that is needed whether voluntary assisted dying comes in or not.”
Mackay Base Hospital has a dedicated palliative care nurse.
In 2017, it recruited a palliative care nurse navigator to help guide people with a terminal illness through the healthcare system.
Mackay Hospital and Health Service acting chief executive Marc Warner said there was no maximum capacity limit set for its palliative care service.
“At any one time there are up to 50 patients accessing palliative care and each year about half of these patients are supported to die at home,” Mr Warner said.
“We recognise supporting people at the end of their life is a sensitive time in life and we are always striving to see how we can enhance our work in this area.”
Mackay Mater Hospital executive officer Beth Thomas said the hospital had a ninebed palliative care unit, which recently reopened after undergoing a refurbishment.
The number of beds in the unit can be increased during times of higher demand.
Ms Thomas said statistics from Palliative Care Australia found 70 per cent of patients preferred to die at home.
“Investment in services and having funds available to provide really good palliative care everywhere is the first step.”