The fifth background paper focusses on advance care planning in Australia, the sixth background paper centres around informal and unpaid carers who are critical for the sector to work efficiently and sustainably, and the seventh background paper summarises the legislative framework for Aged Care Quality and Safety Regulation and the complexities around the current system.
The papers are part of a series of background papers the Office of the Royal Commission is issuing following hearings around the aged care sector. Any views expressed in them are not necessarily the views of the Commissioners.
Background Paper 5: Advance care planning in Australia
This paper found that most older Australians are not prepared for when, or if, they become incapable of communicating as a result of accident, dementia, or illness.
Older Australians have not organised an advance care directive showing the way they wish to be cared for when they can no longer make the decision for themselves.
The Royal Commission into Aged Care Quality and Safety has been provided with information showing that people aged 65 and over are ill-prepared with only 3 percent having an advance care directive in place.
These directives allow for a person to still have control over how they are cared for and treated when they are unable to consent or take action.
An advance care directive includes the individual's goals, preferences and values of the care they want until they pass away.
The paper says, “Advance care planning has been shown to reduce unnecessary transfers from a residential aged care facility to a hospital and decrease a person’s level of worry and anxiety about their future.
“Advance care planning can also have benefits for the person’s family, by improving the family’s understanding of the person’s wishes and reducing stress, anxiety and depression in the surviving family by helping them prepare for a death.”
Advance care planning has been shown to decrease depressive symptoms among those with dementia and for those approaching end-of-life.
“Advance care planning has been shown to positively influence quality end-of-life care, increase compliance with a person’s preferences for their end-of-life care and increase the likelihood that a person will die in their preferred setting,” says the paper.
“These can be very challenging conversations that require someone to engage with their own mortality and plan for worst case scenarios.”
The paper identified a number of issues for the low uptake of directives, including a lack of awareness and understanding around advance care planning.
People also seem to be reluctant to talk about cognitive deterioration, end-of-life planning and death.
Background Paper 6: Carers of older Australians
The sixth background paper explored the roles of carers of older people, the challenges and needs they have, as well as the services and supports needed to assist carers in their role.
Since older Australians are choosing to remain living in their homes for longer, there has been an increased reliance on family and friends to take up the care in place of formal home support services.
The paper notes, “Given the large number of family and friends providing care to people over the age of 65, it is clear that the replacement value of these services for the aged care system would be significant, critically affecting its current sustainability.”
While there is a general call for more support for carers, there is a low participation rate for available carer supports, including respite care.
In the 2015 Survey of Disability, Ageing and Carers, 58.9 percent of primary carers surveyed had not received assistance from any organised services in six months.
According to the survey, 35.1 percent were not satisfied with the range of organised services available to help them in their caring role, and 25.4 percent were not aware of these services.
The paper believes the potential reason for this is lack of carer-awareness or supports to link carers to appropriate services, as well as challenges for diverse communities and their needs.
“A lack of cultural appropriateness in services can make it difficult for carers to access and engage in the provision of the formal care of their family member,” the paper says.
“The need to ensure current services appropriately assist carers to meet the needs of the people that they care for appears greater than ever.”
Background Paper 7: Legislative Framework for Aged Care Quality and Safety Regulation
The seventh background paper summarises the key features and complexities of the current regulation of aged care quality and safety and the legislative framework for Aged Care Quality and Safety Regulation.
Addressing a number of issues, the paper goes into detail about the responsibilities and obligations linked with the Aged Care Act and the Charter of Aged Care Rights.
It also examines what a care recipient has to go through to make a complaint to their care provider or the Aged Care Quality and Safety Commissioner.
The paper looks into the approval of providers and how they become eligible for Government subsidies and supplements to provide aged care; the obligations of approved providers in relation to the quality of care, user rights and accountability; accreditation and quality review processes; enforcement and sanctions; complaint processes; and advocacy and community visitors.
“Aged care quality and safety regulation is intended to protect and enhance the health and wellbeing of care recipients,” the paper says.
The Aged Care Quality and Safety Commission also analysed their regulatory functions and the way they handle complaints.