What should you specify in your Advance Care Directive?

Key Points:

• An Advance Care Directive (ACD) should be done when you update your Will, estate plan or near end of life
• Close friends, family, your doctor and aged care facility should have a copy of your Advance Care Directive
• If you have specific wishes around end of life care, it should be documented and signed in your ACD

While legislation around ACD’s can differ from State to Territory, they are legally binding and it gives you the opportunity to make your future healthcare preferences known if you lose decision-making capacity due to injury or illness.

Not only is an ACD important for you to receive the care that you want, but it can also take the difficult decisions out of the hands of your family and friends.

If you have a sudden health crisis, this document will stipulate how and if you receive care at all during an emergency. This can be very helpful, for example, if you have specific religious beliefs that don’t agree with certain procedures.

Below are a few areas it is recommended you should be quite clear about in your ACD so that your wishes can be followed.

Outline your appointed substitute decision-maker

You need to choose someone you trust to be the substitute decision maker for any healthcare-related decisions, end of life care, living arrangements or other stipulated personal matters if you lose the ability to do so.

The decision-maker can have a different name depending on where you live, for example, it is just an Enduring Power of Attorney in Queensland and the Australian Capital Territory, where it is a medical treatment decision-maker or medical Enduring Power of Attorney in Victoria.

The decision-maker you select will make decisions on your behalf and should follow your directions in the ACD around any of the above areas, but cannot make financial decisions.

If you don’t elect a decision-maker, someone close to you will be asked instead.

A decision-maker may also make decisions on your behalf that they believe you would have made if you were able.

Depending on the State or Territory you live in, your Advance Care Directive will have different effects or regulations to follow.

For example, in South Australia, your ACD will proceed over any documentation for an Enduring Power of Guardianship, a Medical Power of Attorney or an Anticipatory Direction, while New South Wales has different rules around an Advance Care Directive that includes Enduring Guardian documents within your ACD.

Head to the Advance Care Planning Australia website to find out what State or Territory laws apply to you.

Refusal of health care and other medical decisions

In your ACD, you should outline any specific medical procedures, healthcare, or life-sustaining procedures you do or do not want. This is known as a refusal of healthcare.

Clearly state in your ACD the circumstances of when a refusal of health care applies, for example, a do not resuscitate direction or a no transfusion direction.

Your ACD can direct the substitute decision-maker and your doctor depending on the circumstances you are in.

It also means a health practitioner will not be able to provide you with a medical procedure or healthcare service that you have refused.

However, if you are not specific about when a refusal comes into play, then a healthcare refusal is considered to be applied at all times.

Keep in mind that a medical professional can decide to not adhere to a refusal of healthcare if they believe or have evidence that you may have changed your mind but hadn’t changed your ACD to reflect that.

Additionally, if a medical professional doesn’t believe the circumstances fit with your description of a refusal of healthcare, then that will also not be followed.

Healthcare that can be highlighted in your ACD can include life-sustaining treatment, surgery, mental health treatment, medications, dental, emergency care, nursing care, allied health services, or other services provided by registered health practitioners.

Lifestyle and personal decisions

There are some personal areas of your life that you can outline in your ACD.

If you have spiritual beliefs or are from a certain cultural background, you can specify ongoing services that meet your spiritual or cultural needs.

This can include placement into a spiritual/holistic or cultural aged care facility.

You can also provide direction about where you wish to live and what sort of aged care facility you prefer, as well as whether you want to go into supported care or receive dementia care.

Your directions can be as small as wanting a room with a window that looks over the sea or a garden. Make sure to add the little things that would make your life happier even if you didn’t have cognitive issues.

Other areas you can cover in your ACD could be around what will happen with your pets, whether you still wish to go on holidays, what will happen to any employment or volunteering duties, preferences on personal grooming and dress standards, and support of ongoing relationships.

Do not resuscitate

Sometimes, there are extreme emergency situations that could affect your life and you may decide to put a ‘do not resuscitate’ stipulation in your Advance Care Directive.

It’s hard to ask your family to follow such a strong direction, but there can be strong reasons behind why you would not want to be resuscitated.

For example, some people may worry about what will happen to their mind and body after a stroke and for that reason, they may not wish to be resuscitated. This can also be the case if someone is living with a chronic illness or disease.

Even your preferences around life-sustaining treatment should be identified in your ACD.

While life-sustaining treatment may keep your body alive, it could have no effect on your overall health and brain function.

Some people would prefer to not be left on life-support with all the other medical procedures or machines that go with it.

Before expressing this in your ACD, make sure to let your loved ones know in person what your wishes are so they can understand your decision.

Donation of body to science

When you die, there is a small window of opportunity for your body or body parts to be reused for other medical procedures to save another life, or you may choose to organise the donation of your body to science.

Your ACD can hold your wishes to what happens to you after you do die. You should also talk with your family and friends early on about your wishes for your funeral or burial after you die. To learn more about funerals and planning, read our articles, ‘Funeral planning: Considering burial options‘ and ‘Having a say in your own funeral‘.

It can be helpful to outline any decisions around your body in your ACD, as well as funeral and burial wishes.

What do you want covered in your Advance Care Directive? Let us know in the comments below.

Related content:

What is an Advance Care Directive?
Palliative care: How does it impact someone’s life?
Creating a strong estate plan
Do I really need a Will and last testament?
The role of advocacy in aged care