ACPA and Dementia Australia Position Statement: advance care directives for people with dementia

The context

Advance care planning is relevant to all adults, but particularly people living with dementia. Advance care planning promotes an individual’s choice, control and decision-making over future medical treatment, for a time when they may lack decision-making capacity. It is a way of ensuring that people living with dementia can plan for the future of their care at a point at which they are still able to make independent or supported decisions.

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 what is termed 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, common law or policy, and support quality palliative and end-of-life care.¹

The issue

Despite comprehensive legislation, policy, forms, resources and guidelines, there is limited awareness and uptake of advance care planning across Australia, including across health sectors, the workforce and among people with dementia.Nationally, the uptake of advance care planning remains low, with 75% of Australians aged 65+ not having completed an ACD. In residential aged care services, 62% of residents aged 65+ do not have an ACD completed by them in their health record. For those people with dementia, 68% do not have an ACD.²

For people with dementia there are additional barriers to making informed choices, particularly given cognitive abilities can change quite rapidly and abilities to make decisions can be impacted. For optimal outcomes, conversations about advance care planning should occur early on, preferably at the point of diagnosis. However, due to lack of awareness of both dementia and ACDs, the uptake of advance care planning is not as common as it should be.

There are also issues with the accuracy, currency and validity of ACDs, particularly within aged care. For example, in a national study, the prevalence of ACD documentation in residential aged care completed by someone other than the resident themselves was 30%. This means nearly half of ACDs in residential aged care are not being completed while the person impacted is able to indicate their wishes. 68% of these documents had limitations of treatment to only symptom management and comfort care. For people with dementia, only 32% of audited records contained one statutory or non-statutory ACD. ²

Documents that are not completed in collaboration with the individual impacted could place the person, those completing the documentation, health and aged care workforce and/or service providers at risk.

Advance Care Planning Australia and Dementia Australia recommend and advocate for improved awareness and understanding of the unique advance care needs of people living with dementia, their families, and carers.

Advance Care Planning Australia and Dementia Australia’s position is that:

• Autonomy, self-determination and diversity among older persons with dementia, their families, carers and advocates should be recognised and respected. This includes access to advance care planning and having their preferences known and respected.
• Individuals, their families and health professionals should engage in advance care planning conversations at the time of diagnosis, as this is critical in supporting people with dementia to exercise choice and control over the care and treatment they wish to receive at the end of life, while they are still able.
• Individuals should be educated on the importance of appointing substitute decision makers they know and trust who understand and will respect their wishes. They should be supported and able to appoint a substitute decision-maker, whilst they have capacity who may be required to make decisions when the person is no longer able to communicate their own preferences.
• 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 (default or appointed) involved in their medical treatment decisions via consultation with the treating team, in accordance with the jurisdictional legislation.
• 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 (e.g. “not for resuscitation”) should be developed in consultation with their substitute decision maker.
• Even if a person lacks capacity, it is important they are given support to enable them to participate in advance care planning conversations. A person living with dementia must be provided with the opportunity to be supported by a carer or advocate to enable them to make the decision for themselves.
• Documentation of ACD(s) is consistent with jurisdictional legislation and/or policy and is completed by the individual, when they have decision-making capacity, and with the supported or substitute decision maker if decision making capacity is impaired.
• Aged care services and health professionals:
  • have obligations to enact quality ACD(s) to support medical treatment decision-making, palliative care and/or end-of-life care
  • should be familiar with the advance care planning legislation and requirements in their state or territory
  • should be supported to receive ongoing support and education to fulfil their obligations.
• Strategies that are aimed at increasing awareness and uptake of ACP across all health sectors, including community and residential aged care need to be developed by Federal government in collaboration with States and Territories.
• Increase support and education to help aged care and health service providers better understand the ACP needs of people with dementia and ACP legislation and requirements in their state of territory.
• A system-wide and multifaceted approach is needed to better support people with dementia, their families and carers to understand, complete and review ACDs before loss of decision-making capacity and/or admission to residential aged care.

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, support 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.

Dementia Australia

Dementia Australia (formerly known as Alzheimer’s Australia) is the peak, non-profit organisation for people with dementia and their families and carers. We represent the more than 459,000 Australians living with dementia and the estimated 1.6 million Australians involved in their care. Dementia Australia works with people impacted by dementia, all governments, and other key stakeholders to ensure that people with all forms of dementia, their families and carers are appropriately supported – at work, at home (including residential aged care) or in their local community.

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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.