Advance care planning

Advance care planning is important for anyone, but especially those living with Parkinson’s.

Being clear about your wishes in any advanced care is important not only for you but also alleviates a lot of stress for your loved ones.

What is advance care planning?

Advance care planning is all about thinking ahead when it comes to your health care. It gives you a chance to make decisions now about the care you’d prefer—or prefer not to have—if you become seriously ill and can’t express your wishes or make choices yourself.

It’s a way to reflect on, talk about, and write down what’s most important to you regarding your treatment. Advance care planning ensures your loved ones and health care providers understand and respect your preferences.

In an ideal scenario, advance care planning leads to your wishes being written into an advance care directive. This document can also include the name of a substitute decision-maker—a trusted person who can speak on your behalf and help make sure your preferences are followed. There are often two types of documents mentioned in advance care planning but they do differ.

Advance Care Directives are a document you write yourself, detailing your preferences for care, values, goals, and directions about treatments. You can also name a substitute decision-maker in this directive. Advance care directives are legally binding, so the preferences you document must be followed. The process and document names differ between Australian states and territories. More here.
Advance Care Plans are created by someone else for people who cannot make decisions themselves. They may include beliefs, values, and care preferences to guide substitute decision-makers and health professionals, but they’re not always legally binding. Some states and territories have specific forms for these plans.

Why is advance care planning important?

Advance care planning is important for everyone—it benefits you, your family, carers, and health professionals.

It helps ensure you receive the care you want.
It improves ongoing care, end-of-life care, and satisfaction for you and your loved ones.
Families who have been part of advance care planning often feel less anxiety, stress, and depression, and they are more satisfied with the care provided.
For health professionals and organisations, it helps avoid unnecessary hospital transfers and unwanted treatments.

If you don’t document your preferences or appoint a substitute decision-maker, and you become seriously ill or injured, doctors will base their decisions on what they think is in your best interests. This could result in treatments you might not want.

Planning not only for people with Parkinson’s

Advance care planning is something everyone should consider, no matter your age or health status. It’s best to start when you’re well, before there’s an urgent need. It involves open conversations with your family, friends, and care team. These discussions can help you reflect on what’s most important to you. It’s especially important if you:

are older,
have a long-term illness,
manage multiple health conditions,
have early cognitive impairment, or
are nearing the end of your life.

Important things to remember

Advance care directives should contain:

the person’s full name
date of birth
address
person’s signature
any statutory advance care directives appointing a substitute decision-maker should contain instructions for the substitute decision-maker.

Key Statistics

Only 29% of older Australians have any type of advance care planning (ACP) document.
Among older Australians, just 14% have a legally-binding advance care directive (ACD).
Being in residential aged care is the strongest predictor for having ACP documentation, with 38% of residents having some form of documentation.
Discussions about ACP with a GP or others in your care team like a social worker significantly increase the likelihood of having ACP documentation.

Infosheet under review

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.

References & resources

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.
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.
Aged Care Quality and Safety Commission 2018. Guidance and resources for Providers to support the Aged Care Quality Standards. May 2019.