Advance Care Planning
Key points
- Advance care planning allows you to help guide your care in the future, even if you are unable to make decisions at that time
- It’s a way of letting everyone know now – including family and health care providers, what you want for your future health care
- It is simple – you can start today
- This article will walk you through the process to create an advance care plan
What is advance care planning?
An advance care plan is a plan for your future care. It means you think carefully now about decisions, so everyone knows what you want if you become too ill to make decisions or are not able to communicate your wishes in the future.
Preferably this plan is formalised into an advance care directive, which is a formal statement of your choices and preferences for care if you are unable to formulate or communicate them. You can find out more about creating an advance care directive in your state or territory here or visit the Advance Care Planning Australia website or call 1300 208 582.
Anyone can have an advance care plan. If you have been diagnosed with advanced liver disease you might consider an advanced care plan. This is so that if your liver diseases progresses for example, to hepatic encephalopathy (the mental fog of liver disease), you can communicate your wishes.
An advance care plan sets out the sort of care you would prefer. It means how you feel about your care is clear, it’s understood by your family and loved ones, as well as your health care team, so everyone knows what you want.
If you don’t have an advance care plan, doctors will make decisions based on what they think are in your best interests. In some cases, those decisions may not always be what you would have chosen for yourself, had you been able.
NOTE: An advance care directive is determined by a person while they are able and legally competent to make the decisions about their end-of-life planning. If you’re caring for someone who can’t make decisions for themselves, then the details about making decisions in advance about health care become more complex. Specifically, a formal advance care directive cannot be formalised once the person it relates to is no longer considered competent to make those decisions. This underlines the important of making these advance care plans early.
Often, in the case of very advanced liver disease, when end of life decisions must be made, decisions will be made collaboratively with family members and loved ones in the best interests of the patient. Very rarely, when that is not clear or there is disagreement, these end-of-life decisions are referred to the Adult Guardian, who is employed to protect the rights of individuals unable to communicate for themselves or where there is discordance about what those wishes might be.
In advance care planning, the person you might consider to make health care decisions on your behalf, may be different from the person making decisions about your finances or other administrative issues. Some states and territories have forms to help you do this.
Importantly, other non-health advance care decisions about a person’s legal or administrative matters (eg sale of assets) can also be very complex once their capacity to make their own decisions is lost. Laws and terminology vary state by state. In general, laws protect people who are unable to communicate their own wishes about material or administrative issues. Some decisions may require referral to state administrative tribunals and may elect to make these decisions. Similarly, after death if there is no formal will in place, the distribution of any remaining assets a person has will be determined by an independent government body (probate) to make decisions. Consider independent legal advice.
Putting together an advance care plan
1. Think about what matters to you most.
What are your values, beliefs and preferences for your future health and care? Here are some questions from Advance Care Planning Australia:
- What makes life worth living? For example, talking to your family
- What abilities do you need to maintain to preserve your dignity? For example, toileting independently
- What if you cannot recognise or understand your family?
- What if you cannot eat or drink?
- What if you are not able to talk to your family and friends?
- What if you lost your independence and needed help to do everything?
- What short and long-term goals do you have? For example, attending a birthday, going on a holiday
- What treatments will help you to live the way you want?
- What would be your minimum acceptable outcome? For example, feed yourself, think for yourself
- How may your beliefs about religion and spirituality affect your choice of medical treatments?
What do you not want to happen?
- Are there any medical treatments that you feel strongly about, either having or not having? This should include life-prolonging treatments.
Do this while you’re still well enough to make decisions and communicate them with your loved ones and doctors.
2. Talk about it with others
Your family and friends don’t always know or understand your preferences. The more they know, the easier they can help to guide your medical treatment when you can’t do it yourself.
To get some tips about talking to your loved ones about your plan, read about starting the conversation.
You should also speak to your doctor. They can provide you with information and advice regarding your current health situation and what may happen in the future.
- Choose a substitute decision maker
A substitute decision-maker is someone you choose to make medical treatment decisions on your behalf if you are not able to do so.
They should be somebody:
- you trust
- who is over 18 years
- who will listen carefully to your values and preferences for future care
- who will be comfortable making decisions in difficult situations in your best interests and the manner that reflects your values and preferences
When choosing your substitute decision-maker, you should ask yourself the question: ‘Am I confident this person will make decisions based on what I would want?’
Some people to consider are your:
- partner
- friend
- sibling
- adult child
- parent
- religious advisor
- legal representative
You may also choose a second person (an alternate substitute decision-maker). They will be called on if your substitute decision-maker is unable to make decisions on your behalf.
Your chosen substitute decision-maker may have to make important decisions on your behalf so it’s important for them to understand what’s involved with being a substitute decision-maker.
Substitute decision-makers may have different titles depending on the Australian state or territory you are in. Understand that some of these decisions can revolve around health AND/OR financial and administrative matters. In some cases, these decision-makers will act on their own or you may elect to have more than one; and can also elect that they can either make the decisions in isolation or they have to be in agreement. Terms vary state by state, but include:
- Medical Treatment Decision-Maker or Medical Enduring Power of Attorney (Victoria)
- Enduring Guardian or person responsible (New South Wales, Tasmania, Western Australia)
- Enduring Power of Attorney (Queensland, ACT)
- Substitute Decision-maker (South Australia)
- Decision-maker (Northern Territory).
4. Write down your choices
After you’ve thought about your future health care, discussed it with others and selected a substitute decision-maker, you should record your choices in the right document (or documents). How you do this is different in each state and territory.
Filling in these documents is the best way to make it known about the type of treatment you would want if you are unable to participate in decisions. It will help your family and health professionals to respect your choices. Having a formalised document that is available when needed can make a big difference if decisions need to be made quickly or the substitute decision-maker can’t be contacted.
After creating your documents, you should share copies with your substitute decision-maker, family, friends, carers and your doctors. This will ensure everyone knows what you want. We also recommend uploading your documents to My Health Record.
Find out how to record your choices in your state or territory.
Find out more about Advance Care Planning contact Advance Care Planning Australia.