Australia | Younger Queenslanders Miss Out on Carer Support

Pallative care

Dying Queenslanders under 65 are missing out on access to vital in-home care support services that would make their final days more comfortable and ease the burden on their grieving families. Karuna Hospice Services, CEO Tracey Porst said National Palliative Care Week (May 22-28) was a perfect opportunity to call for better access to funding for practical in-home support services for younger Queenslanders with a terminal illness.

“Karuna Hospice Services is one of just a few organisations that provide specialist in-home palliative care services to Queenslanders at no cost,” said Porst.

“Our highly skilled nursing staff and doctors provide medical care, and we offer grief and bereavement counselling for patients and their families, but that’s only part of the end of life equation.

“We need to break this stereotype that palliative care is just for the elderly, it’s not. We care for many people under 65, including young mothers and fathers who still have young children to support.”

According to Porst unless you are over 65 and eligible for My Aged Care funding, or have an approved NDIS plan, there is no specific financial support available for other services that ease the burden like cooking and cleaning, assistance with showering or bathing, or respite care for families providing palliative care.

She said many under 65s typically fell through the net, having to fund additional help on their own, at a time when many had given up their regular source of income to become carers.

“Some families who are providing care for an under 65 palliative family member may be able to apply for funding set up for other purposes, but realistically there is nothing specifically for this purpose that they can access in a timely manner,” she said.

“Their partner often has to give up work to care for their loved one, so paying for these additional services just to get a little help can be extremely difficult.

“Sadly, for some families the physical and financial burden becomes too much and while they would love to keep their loved one at home, surrounded by friends and family, they buckle under the weight of 24/7 care.”

Karuna Hospice Services delivered palliative care to 349 people in 2021 and conducted 2357 nursing visits with an average period of care of 106 days.

Porst said on a purely economic basis, keeping terminally ill Queenslanders out of hospital with quality in-home palliative care services saves the health system millions a year.

“Our average cost to provide palliative care to a patient is about $10,000, so imagine how much it would cost to provide that to all Queenslanders in a hospital environment,” she said.

“Sadly in Australia, not everyone has the option to choose to die at home. For those who can we need to be doing everything we can to respect those wishes and ensure they and their families are well cared for,” said Porst.

When Andrew Ebringer’s former wife Sally, 59, was diagnosed with throat cancer in March 2021 she moved into his home with their adult children Eliza and Alex while she received treatment.

The children put their work and study lives on hold to help care for Sally while she received treatment and afterwards when she began receiving palliative care in the home.

“We are quite grateful that Sally was able to die at home, and didn’t need to be moved into a hospital or hospice,” said Ebringer. 

“I think Karuna allowed us choice. They allowed someone like Sally to spend as much quality time as she had left at home surrounded by family and friends and we were able to be there to provide the rest of her care.”