ACPA Consultation Paper: advance care directives within community and residential aged care

The context

In Australia, there is significant aged care legislation, policy, regulation and services reform underway to promote quality and safe aged care. The reform of aged care promotes many improvements including enhanced choice and control in decision-making for older Australians, and has focused attention on advance care planning and advance care directives for health and aged care services.

Advance care planning is relevant to all adults, particularly older people. Advance care planning promotes an individual’s choice and control over future medical treatment decision-making, for a time when an individual may lack decision-making capacity.

An individual with decision-making capacity can document their preferences for care, values and/or appoint a substitute decision-maker by completing the relevant jurisdictional advance care directive (ACD) form(s). An ACD is completed and signed by a competent adult, but only comes into effect when the person loses capacity to make medical decisions. All health professionals have obligations to access and implement ACDs that comply with legislation, and support quality palliative and end-of-life care¹.

The issue

Despite comprehensive legislation, policy, forms, resources and guidelines, there is limited awareness and uptake of advance care planning across Australia, health sectors, the workforce and consumers. Nationally, the uptake of advance care planning remains low with 70% of Australians aged 65+ without an ACD. In residential aged care facilities, 62% of residents aged 65+ are without an ACD².

There are issues with the accuracy, currency and validity of advance care directives, particularly within aged care. For example, in a national study 30% of ACD documentation from aged care had been completed by someone other than the competent individual. This finding is not consistent with the law, with the exception of Tasmania. Sixty-eight percent of these documents had limitations of treatment to only symptom management and comfort care². Unlawful advance care directive documentation places the consumer, those completing the documentation, health and aged care workforce and/or service providers at risk.

Advance care planning legislation places obligations on registered health professionals. However, the aged care sector includes non-registered workforce such as Assistants in Nursing or Personal Carers. Current legislation, policy and education does not define the obligations of this group in relation to advance care directives.

Advance Care Planning Australia’s position is that:

1. autonomy, self-determination and diversity among older persons in aged care should be recognised and respected
2. every Australian receiving aged care services should have access to advance care planning and for those willing to undertake advance care planning, their preferences should be known and respected
3. the laws of each Australian jurisdiction are to be respected and upheld
4. documentation of ACD(s) must be by a person with decision-making capacity, consistent with jurisdictional legislation and/or policy
5. aged care services and health professionals:
   1. have obligations to enact quality ACD(s) to support medical treatment decision-making, palliative care and/or end-of-life care
   2. should be familiar with the advance care planning legislation and requirements in their state or territory
   3. require ongoing support and education to fulfil their obligations
6. for an individual without decision-making capacity, a medical document (usually completed by a doctor) that outlines the plan of care for emergency treatment or severe clinical deterioration (eg. not for resuscitation) should be developed in consultation with their substitute decision maker.
7. ACDs should be uploaded to My Health Record to facilitate safe storage and access across health services.

Advance Care Planning Australia strongly recommends:

1. strategies aimed at increasing awareness and uptake of ACP across all health sectors, including community and residential aged care.
2. quality, legally complaint ACP practice that ensures ACDs are only completed by individuals with decision-making capacity.
3. increased support and education to help aged care and health service providers better understand ACP legislation and requirements in their state of territory.
4. a system-wide and multifaceted approach to better support Australia’s ageing population to understand, complete and review ACDs before loss of decision-making capacity and/or admission to residential aged care.
5. sustainable investment in Advance Care Planning Australia to:
   1. maximise their ACP leadership and coordination with the aged care sector
   2. deliver and promote the appropriate systems, workplace training and resources to increase uptake of ACP within legal frameworks
6. individuals who do not have decision-making capacity and have not developed an ACD, maintain personal choice and control by having the identified substitute decision-maker involved in their medical treatment decisions as much as possible, and in accordance with current legislation.
7. the review of the National Framework for ACDs and more consistency in ACP legislation across the jurisdictions regarding terminology, scope, obligations and recognition.
8. more widespread implementation of the Advance care planning in aged care: A guide to support implementation in community and residential settings guide to promote best practice around ACP systems, processes, governance etc.
9. aged care services encourage use of My Health Record, both at the individual and service level, to enable storage, transferability between services and accessibility.
10. ongoing promotion, resources and research to support the unique needs of culturally and linguistically diverse groups, members of the LGBTQI community, people living with a disability, and other diverse groups within aged care.

Further information

ACP promotes choice and control over future medical treatment decision-making, for a time when an individual may lack decision-making capacity. For individuals receiving aged care services, personal choice and agency in medical treatment is fundamental to their right to live autonomously and with dignity.

The Aged Care Quality Standards³ specify the expectations and requirements of all organisations providing aged care services, including Standards to ensure individuals receiving aged care services are supported to exercise control over the way they live and die, “including advance care planning and end of life planning if the consumer wishes.”

For all Australians, including those receiving aged care services, the completion of an ACD will offer the best chance of safeguarding and actively controlling their future health care and medical treatment. Individuals with decision-making capacity can make directives ahead of time to guide their care in the future, when they are unable to make their own medical treatment decisions.

Advance Care Planning Australia

Advance Care Planning Australia (ACPA) is a national program, enabling Australians choice and control of their life and future health care. ACPA promotes national collaboration and provides an advance care planning resource hub, advisory service, workforce education resources, and research findings.

Find more information about advance care planning in your state or territory or for advice and support freecall 1300 208 582 or visit advancecareplanning.org.au.

Advance Care Planning Australia invites feedback on this consultation paper from health and aged care stakeholders. To provide written feedback please contact us by COB, Friday 1 November.

1. Fountain S, Nolte L, Wills M, Kelly H, Detering K. 2018 review of advance care planning laws across Australia: short report. Austin Health, Melbourne: Advance Care Planning Australia.
2. Buck K, Detering KM, Sellars M, Sinclair C, White B, Kelly H and Nolte L. 2019. Prevalence of advance care planning documentation in Australian health and residential aged care services. Advance Care Planning Australia, Austin Health, Melbourne.
3. Aged Care Quality and Safety Commission 2018. Guidance and resources for Providers to support the Aged Care Quality Standards. May 2019.