Access to palliative care

The human right to access palliative care is a welcome inclusion in Australia's new Aged Care Act. In their submission on the Aged Care Act – Exposure Draft, Palliative Care Australia (PCA) and its members have put forward critical recommendations that will enable these rights to become a reality. 

"This new law will shape the provision of services while driving further policy reform and funding, it's another key step in the reform agenda inspired by the Aged Care Royal Commission, which said that palliative care is core business for aged care providers," says Camilla Rowland, Chief Executive Officer, PCA. 

"While key aspects in the draft Act take us forward, important detail and understanding is missing." 

PCA believes as it stands, the draft Act runs the risk of misrepresenting the role of palliative care and the benefits it can deliver when it comes to quality of life for people with life-limiting illnesses. 

The draft Statement of Principles sets out how the Australian Government will administer the Act. It states that one of the purposes of aged care is to:  

"maintain or improve the individual's physical, mental, cognitive and communication capacities to the extent possible, except where it is the individual's choice to access palliative and end-of-life care." 

Ms Rowland says, "this statement suggests that maintaining a person's quality of life ends with a referral to palliative care." 

"At its heart and soul, palliative care focuses on sustaining quality of life with the impeccable management of pain and other symptoms – not to forget the social, emotional, and spiritual care needs of the person. 

"Our strong advice is that everyone entering aged care should receive a palliative care assessment. This might lead to simple changes like making sure an advance care plan is discussed and documented, or it might lead to a palliative care plan where necessary. Without routine assessment, too many aged care residents will continue to miss out their human right to palliative care." 

PCA is also concerned about unintended consequences of introducing a hard age-based criteria for receiving aged care.  

"It might surprise people to learn that this will be the first time there will be an age threshold to receive aged care enshrined in law," Ms Rowland says.  

"At the moment, unfortunately many people under 65 years are entering residential aged care because the functional supports they need in order to be cared for at home simply don't exist or are out of reach.  

"Viable alternatives to aged care must be in place for people under 65 years before the new Act is fully implemented, otherwise the new age cutoff will leave these people with less support. 

"PCA calls on government to explain how it plans to meet the needs of this group outside of the aged care system. Without a plan in place, there will continue to be negative outcomes for a group that has historically fallen through the gaps between service systems." 

Other PCA concerns include potentially unclear and complex arrangements regarding supported decision-making, and how these relates to long-established state-based laws around guardianship, Advance Care Plans and Advance Care Directives. 

"PCA and our members around Australia believe we need to deepen and extend the reform agenda of the last three years," Mr Rowland says 

"We look forward to continuing to play our part because the delivery of quality palliative care is so important to the wishes all Australians have for their parents, loved ones, and themselves. 

"Access to palliative care is a human right we'll keep standing up for."  

PCA's full submission on the 'New Aged Care Act – Exposure Draft' can be viewed and downloaded from the PCA website.