What is Advance Care Planning?
Advance care planning is a process of thinking about, sharing and recording what you want done, or not done, when you can no longer speak for yourself about your health. This may involve talking to your loved ones about what you want, deciding who you trust to make decisions for you when you can’t make them for yourself, and completing the right legal documents.
Advance Care Planning is a conversation everyone needs to have. It may not be an easy conversation, but it is important to help your loved ones make decisions at a time when they are distressed or unsure about what is the best thing for you. It also helps medical staff know your choices.
You can change or add information to an Advance Care Plan at any time. So if your circumstances change or what you want changes, you can update your Advance Care Plan to make sure your current wishes are included.
If you are able to make decisions, you can make a choice that is different to what is recorded in your Advance Care Plan.
What we do
HCCA runs Advance Care Planning education sessions for groups of people with chronic health conditions and their carers. If you are interested in booking a talk for your group or organisation, please contact the office on 6230 7800 or contact [email protected].
Download our latest resources on Advance Care Planning from our resource library. These include our resource lists from Dying to Know Day and Plain English templates for writing your plan.
You can watch recordings of our webinars from Dying to Know Day and “Advance Care Planning: A conversation for everyone” on this Youtube playlist.
Advance Care Planning in the ACT
Who would you like to make medical decisions for you if there came a time when you could no longer speak for yourself? In an emergency situation, an Advance Care Plan provides medical teams with the information the need to make decisions that reflect what you want, even if you can’t tell them at the time. There are three forms to make your choices clear in an Advance Care Plan:
- Complete an Enduring Power of Attorney (EPoA).
- Complete a Statement of Choices.
- Complete a Health Direction under the Medical Treatment (Health Directions) Act 2006.
Having a Power of Attorney, completing a Statement of Choices and/or a Health Direction can help you to:
- Make your wishes known about the type of medical treatment you want if you can’t actively make decisions about your medical care.
- Protect your right to refuse unwanted medical treatment and to ensure you get suitable relief from pain and suffering.
If you live in NSW, the forms are different. You can learn about planning in NSW and download the forms from Advance Care Planning Australia. You can still share your plan with health services you use in the ACT.
Book an appointment for help with your plan
The Canberra Health Services Advance Care Planning Program holds sessions each week to help people complete their forms. Call 5124 9274 or email [email protected] to book an appointment for:
- Mondays at The Canberra Hospital (Garran) and North Canberra Hospital (Bruce)
- Tuesdays at The Canberra Hospital (Garran)
- Thursdays at University of Canberra Hospital (Bruce)
Or, call Council on the Ageing ACT on 6282 3777 to book for Thursdays at COTA ACT, Wisdom Street, Hughes.
Making Your Plan
Partner, Family and Friends
When making your Advance Care Plan, you need to discuss your wishes for medical care with your family and other significant people in your life. It is important to ensure that these people clearly understand your wishes and any instructions you want to give.
If you do not discuss your medical treatment wishes with the important people in your life, they could ask for care and treatment on your behalf without understanding the implications and that the treatment may be against your wishes.
Advance Care Planning Australia has useful resources on how to start the conversation with your loved ones.
Medical Practitioners
Family doctors such as your general practitioner can play an important role in assisting with decisions about your medical care. Some GP practice nurses also have training to help with advance care planning.
An Enduring Power of Attorney gives you the power to choose a relative or friend to manage your health care, personal care and financial affairs should you become incapacitated or if you develop a condition that affects your decision-making. You can appoint more than one attorney if you wish.
Enduring Powers of Attorney are governed by the Powers of Attorney Act 2006.
In the ACT your spouse or next of kin have no legal right to make formal substitute decisions on your behalf unless there is an Enduring Power of Attorney in place.
You can choose the decision-making areas you give to your enduring attorney/s which can include any or all of the following areas:
- Financial and Property
- Personal Care
- Health Care
When selecting someone to be your attorney it is important to choose someone who:
- You trust and who knows you well
- Is over 18 years of age
- Is willing to respect your views and values
- Is able to make decisions under circumstances that may be difficult or stressful
Often a family member is a good choice as an attorney, but not always. Make sure that you choose someone who will closely follow what you want and will be a good advocate for you.
If you choose not to complete an Enduring Power of Attorney and you become unable to legally make or communicate decisions for yourself, any medical decisions could be made by a Guardian appointed by the ACT Civil and Administrative Tribunal (ACAT) under the Guardianship and Management of Property Act 1991.
You can download a copy of the Public Trustee and Guardian’s Power to Choose guide, including the forms or contact us for a paper copy.
The Statement of Choices is a document used to guide future medical decisions when you lose the ability to make or communicate your medical decisions yourself.
The law says that this statement must be taken into account when determining your treatment. The Statement of Choices is designed to inform your attorney (the person you have chosen to make decisions on your behalf) and the doctors about your medical treatment wishes. It is not legally binding, unlike an Enduring Power of Attorney or a Health Direction.
You need to think about:
- when you would not want life prolonging treatments
- what is an acceptable level of ability or independence (e.g. self care, toileting, speaking) and
- your ability to participate in the thing that you enjoy
- what a reasonable outcome of medical treatment is that you would be willing to live with
For example, you may say in your Statement of Choices that if you are unable to communicate with or recognise your family, and there is no possibility that you will ever recover or improve, then you do not want CPR if your heart stops, and you only want to be kept comfortable and free from pain.
You can see more examples and fill in your statement of choices using the Advance Care Plan Statement of Choices (Competent Person) booklet from ACT Health or contact us for a paper copy.
In the ACT you can also give legally binding directions about medical treatment that you do not want now, or want to stop in the future, by completing a Health Direction under the Medical Treatment Act (Health Directions) 2006. This is a legal document that gives competent adults the legal right to refuse or withhold medical treatment.
If your Health Direction and Enduring Power of Attorney say different things, your decision makers will use the most recently dated one.
You can download the Health Direction form from ACT Health. It is recommended that you complete this form with help from your treating doctor.
To make your wishes known you need to share your Advance Care Plan. To lodge it with Canberra Health Services, you can:
- upload it to your ACT Digital Health Record through My DHR,
- mail a copy to
Canberra Health Services – Health Information Service
PO Box 11
Woden ACT 2606 - or email a scanned copy to [email protected].
You should also share a copy with:
- your attorney/s or decision makers,
- your family,
- your GP,
- and other hospitals you are admitted to.
It is also a good idea to upload it to My Health Record so it can be used if you are outside the ACT.
There are a range of services available in the ACT to help you with Advance Care Planning. HCCA can provide an introduction to advance care planning information session for people with chronic health conditions and their carers. If you are interested, please contact us on 6230 7800 or by email.
Health Services
You can get assistance with your Advance Care Planning and documentation by contacting the Canberra Health Services Advance Care Planning team on 5124 9274. They can also register your Advance Care Planning documentation and arrange for it to be scanned on to your ACT Health medical record.
General practitioners can assist with decisions about your medical care.
Legal Advice
The office of the Public Trustee and Guardian can provide information and assistance with Enduring Power of Attorney, as can your own solicitor. The Public Trustee and Guardian has developed a guide on completing a power of attorney in the ACT.
Resources
The BeMyVoice website provides advice and guidance on advance care planning and includes consumer stories that might raise issues you haven’t thought of.
Advance Care Planning Australia have a lot of information and resources that are designed specifically for consumers and carers in the ACT. You can also speak to one of their consultants on the phone to help with your planning. Their contact number is 1300 208 582.
Planning Ahead with Younger Onset Dementia
Younger Onset Dementia is the term used for dementia that occurs in people younger than 65.
It is important to start planning for the future before or as soon as possible after your diagnosis so that your decisions are recorded. It’s a good idea to talk about your wishes with your family and health professionals, and make an Advance Care Plan using the steps above.
You will also want to think about:
- Creating a will
- Financial matters, such as mortgages, insurance, and superannuation
- Legal matters
- Employment
- Care and housing arrangements
Some links that can help you plan ahead:
- Younger Onset Dementia Hub | Dementia Australia
- Dementia Australia’s information on Planning Ahead
- Advance Care Planning Australia’s Dementia Resources
If you are concerned about your will or your Enduring Power of Attorney (EPOA) being challenged due to your diagnosis, you can get legal advice through a private solicitor or Legal Aid. You can ask your doctor to confirm that you have the capacity to prepare a legal will or EPOA. Read more at Planning ahead: Decision-making capacity and the law.
Support in the ACT
The following list has some resources that you can use. Inclusion on this list is not an endorsement by HCCA. These are suggestions only.
The Capital Health Network has created services guides for people with dementia and their carers available on their website.
Will kits are available from most post offices for a simple will. However, wills have to meet legal requirements so it’s a good idea to seek help writing your will.
Private lawyers can help with wills, EPOA and estate planning issues. Use the ACT Law Society search to find one.
The Public Trustee and Guardian has advice for making your will. They can help you to write a will or EPOA for a lower fee. You can download Power to Choose, a guide to Enduring Powers of Attorney, from their website.
It may be cheaper to prepare both your will and Enduring Power of Attorney at the same time.
It is important to document your accounts and insurance information for your loved ones. You can use a template like this one: Personal Information Record and store it securely with other important documents.
Services Australia has a free Financial Information Service that can help you understand financial matters and your financial options.
The Money Smart website has tips to help you choose a registered financial adviser: Choosing a financial adviser – Moneysmart.gov.au. You can search for a registered adviser on the Money Smart website. Your superannuation fund or bank may also be able to help you find a registered financial adviser
It is a good idea to talk about dementia and your symptoms with your employer. You can also contact your union for information and support to keep working.
The Younger Onset Dementia Hub has more information about employment and younger onset dementia.
People under the age of 65 can apply for disability support from the National Disability Insurance Scheme (NDIS). Learn how to apply.
Feros Care is the Local Area Coordinator for the NDIS in the ACT. You can contact them for support to understand the NDIS, and for help with your access application. Visit them at Suite 4, 2-6 Shea Street Phillip or call 1300 986 970.
Carers ACT provides younger onset dementia specialist support coordination. Call (02) 6296 9900 for more information.
Dementia Australia’s Younger Onset Dementia Hub includes an NDIS Planning Tool to help you prepare for your planning meeting.
Support for planning ahead
Once a person with younger onset dementia has registered with Dementia Australia, they can refer you to . You can call (02) 6296 9900 to and ask for a younger onset dementia specialist support coordinator who can help with your questions about the NDIS.
Useful resources:
- Advance Care Planning Australia: Making a decision for someone with dementia factsheet
- Dementia Australia: Resources on Planning Ahead for Carers
- The Carer Gateway: Advice on Planning for the Future
If the person you are caring for does not have a Statement of Choices and no longer has legal decision-making capacity, you should still involve them in making decisions as much as possible. This is called supported decision-making. For help supporting decision-making, call ADACAS on 6242 5060 or visit Supported Decision Making – ADACAS
You can record your understanding of their wishes using the Statement of Choices (No Legal Capacity) form.
Caring for yourself
Supporting a loved one with dementia can be take a lot of energy and time for you as a carer or family member. It is important to think about support for yourself as well.
Carers ACT provides support for carers in the ACT such as respite, counselling, and social activities. You can register with them online. They have two cottages dedicated to respite care for people with dementia, allowing carers to take a break.
The Carer Gateway can support you to get tailored support and counselling. Call 1800 422 737 or visit the Carer Gateway website.
If you need advice, support or connections to services, call the National Dementia Helpline on 1800 100 500.