Too little, too late: aged care support must keep pace with life-limiting illness

Palliative Care Australia Media Release

People with life-limiting illness are waiting too long for aged care support and can receive too little help, too late, Palliative Care Australia (PCA) warns. The peak body says assessments must anticipate how people’s needs will increase as their illness progresses, so the right support is in place before a crisis.

PCA is calling on Minister for Aged Care and Seniors, the Hon Sam Rae MP, to ensure the Government’s independent review of aged care classification and prioritisation explicitly addresses palliative care needs and includes palliative care clinicians on its expert advisory group.

PCA Chief Executive Officer Dr Chris Hatherly welcomed the review, saying it must deliver a system that recognises when people cannot wait.

“Behind every assessment is a person trying to manage daily life with a serious illness, often with family and carers doing everything they can to help.

“Getting these decisions wrong can leave people without essential support, put families under enormous pressure and increase the risk of avoidable hospitalisation.”

PCA has received reports of people with life-limiting illness being assigned inappropriately low support classifications or being assessed as ‘standard’ priority (with typical wait times of 10 months or longer) despite substantial care needs and short prognoses. Others have received lower classifications following reassessment as their illness progressed.

“When someone is dying yet their assessed support needs are reduced, something is seriously wrong,” Dr Hatherly said.

A particular concern is the gap facing Support at Home applicants and participants who have substantial palliative care needs but are not yet eligible, or cannot demonstrate eligibility, for the End-of-Life Pathway.

“People can experience severe symptoms, declining mobility and increasing difficulty with everyday tasks well before their final months of life,” Dr Hatherly said.

“They need support when those needs arise. They should not have to wait until they are closer to death to get help.

“For someone with a terminal illness, delays in access to necessary support can take away the opportunity to spend that time at home with the people they love.”

PCA has written to Minister Rae, urging him to:

• Explicitly include palliative care needs in the review’s terms of reference.
• Appoint palliative care clinical expertise to the expert advisory group.
• Ensure the review examines how assessments identify palliative care needs and translate them into appropriate support and urgency, including for people outside the End-of-Life Pathway.

Dr Hatherly said this should include a clear trigger for a focused, validated palliative care needs assessment, appropriate clinical referral, and assessors with the skills to recognise changing needs.

“The Government has rightly recognised that people with motor neurone disease need expedited assessment and prioritisation. People with other advanced or rapidly progressing life-limiting illnesses need the same urgency,” he said.

“An uncertain prognosis must not become a barrier to care.

“We urge Minister Rae to put palliative care firmly within this review and bring the clinical expertise to the table to help get these decisions right.

“What matters is whether the person receives the support they need, in time for it to make a difference.”

PCA has offered to nominate appropriately qualified palliative care experts to assist the review.

Palliative Care Australia is the national peak body for palliative care.