Quality of life vulnerable due to weak Aged Care Act definitions

Last updated on 28 March 2024

Palliative Care Australia is concerned current Aged Care Act definitions are not strong enough for palliative care. [Source: Shutterstock]

The draft Aged Care Act runs the risk of misinterpreting the role of palliative care with Palliative Care Australia (PCA) seeking further details to ensure older people can experience a better quality of life at all stages of their life.

Currently, PCA Chief Executive Officer (CEO) Camilla Rowland is concerned that the draft Statement of Principles 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,” Ms Rowland said.

“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 acknowledged that the new rights-based Aged Care Act underpins positive generational reform, but in its submission to the Government regarding the exposure draft, it recognised that more needs to be done to solidify the rights of older people seeking or receiving palliative care.

PCA’s priority issues

  • The need for definitions of, and opportunities to improve wording used to describe, palliative and end-of-life care
  • The practical implications of the proposed age-based eligibility criteria, for people under 65 with life-limiting illnesses who enter aged care because there are no appropriate non-clinical supports available in other settings
  • The potentially complex interactions between the new approach to supported decision-making, and existing state and territory legislation

Among the key issues is definition (3)(d) under the Statement of Principles which reads:

“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.” 

While the exposure draft’s Statement of Rights later states that individuals have a right to equitable access to palliative care and end-of-life care when required, Ms Rowland said improved language would ensure quality of life is still promoted and supported during palliative care.

Examples include adding definitions of palliative care and end-of-life care in the Act’s Key Concepts, changing the wording in the Statement of Principles to correct the misrepresentation of palliative care, and including a requirement for palliative care needs assessment on residential care entry.

She added that if the human right to access palliative care is supported by the Government in legislation it will be another key step in the reform agenda inspired by the Aged Care Royal Commission into Aged Care Quality and Safety.

Meanwhile, PCA also addressed issues with the Act’s proposed age-based eligibility criteria for receiving aged care. While there is merit in keeping younger people out of residential care settings, Ms Rowland said there needs to be a viable alternative for people under 65 whose needs are not met by another sector.

“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 said.  

“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 urged the Government to explain how it will meet the needs of people who might otherwise fall through the gaps between aged care and disability care. 

You can read their full submission to the exposure draft of the new Aged Care Act here.

Aged Care Act
palliative care
end of life
palliative care australia
camilla rowland
palliative care services
rights based act
quality of life