Palliative care support too little, too late, warns peak

There is a 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, Palliative Care Australia warns.

The peak body said people with a life-limiting illness are waiting too long for aged care support and can receive too little help, too late, pointing to reports it has received of people being assigned inappropriately low support classifications or being assessed as standard priority despite their substantial care needs and short prognoses.

Meanwhile, others have received lower classifications following reassessment as their illness has progressed.

Assessments need to anticipate how people’s needs will increase as their illness progresses, the peak body said. That way, the right support is in place before a crisis.

PCA chief executive officer Dr Chris Hatherly said people can experience severe symptoms, declining mobility and increasing difficulty with everyday tasks before their final months of life and that they need support when those needs arrive.

They should not be made to wait until they are closer to death to get help, he said.

“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,” said Dr Hatherly.

Earlier this month, the government announced an independent review of the aged care classification and prioritisation processes, which Dr Hatherly has welcomed.

But the peak body is also calling on Minister for Aged Care and Seniors Sam Rae to ensure the review explicitly addresses palliative care needs and that palliative care clinicians are included on the expert advisory group. PCA has offered to nominate experts to assist the review.

PCA has also urged Mr Rae to ensure the review examines how assessments identify palliative care needs and translate them into appropriate support and urgency, including for those 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 clinical 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’s call for action follows the release of the Commonwealth Ombudsman’s Automation and oversight in Aged Care report.

The report found the Department of Health, Disability and Ageing’s Single Assessment System – including the Integrated Assessment Tool, used for home care assessments, and oversight of the SAS workforce – has led to unfair outcomes, undermined public confidence and raised serious questions about outcomes that are clinically inappropriate.