Most people have probably thought more about how they’d spend lottery winnings than how they’d prefer to spend their final days. But unlike winning the jackpot – the probability is about 1 in 8 million – death is a given. Everyone dies eventually.

This week, Australians are being urged to think more about planning for situations where they need medical help but can’t communicate. It’s called ‘advance care planning’ and it helps you advocate for your own values and wishes if you’re ever unable to speak for yourself. It can also ensure you get full, active treatment to give you every chance of survival.

While it’s best to make a plan when you’re healthy and it’s something anyone aged over 18 can do, advance care planning is particularly important for people who are older and frail, or have a chronic illness, multiple diseases, early cognitive impairment (such as Alzheimer's disease) or are approaching the end of their life.

Of course, life (or death) doesn't always go to plan. "The time and nature of a person’s death may be unpredictable," says Kim Greeve, spokesperson for Advance Care Planning Week. But there are many things you may be able to control. "For example, a person may have a preference to die at home or die in a hospice. They may wish to have their beloved pet with them or a particular cultural practice respected."

So, what is advance care planning?

Advance care planning involves 2 key things:

• appointing a ‘substitute decision maker’: a person who will be asked to make medical treatment decisions on your behalf if you’re unable to
• writing an Advance Care Directive: a plan with instructions on how you want to be medically treated if you’re unable to communicate

The substitute decision maker is sometimes called a Medical Enduring Power of Attorney or Enduring Guardian, depending on your state or territory. This person should be an adult you trust, someone who will pay close attention to your values and preferences, and someone who’s comfortable making decisions in difficult situations.  

You should discuss your Advance Care Directive, which is sometimes called a ‘living will’, with your doctor, but you don’t need a lawyer to complete it. It should be signed and dated by you, as well as your doctor and substitute decision maker. Copies should be made available to anyone involved in your care – including paramedics. 

You can also upload it to your My Health Record, a digital file of all your important medical information that can be accessed by health professionals.

There are forms to help you write your Advance Care Directive here; you can also find out more about the laws regarding Advance Care Directives in your state or territory.  

Your to-do list 

Be ready for a time when you can’t speak for yourself. Advance Care Planning Australia has created this checklist to help you get started. 

• Discuss your thoughts with those close to you – your family, substitute decision-maker (the person who will make decisions on your behalf), your GP and any other medical professionals involved in your care.

• Ask your doctor any questions that you may have regarding your health and medical treatments.

• Seek advice from an advance care planning advisory service or access more information and resources on the Advance Care Planning Australia site. 

• Legally nominate your substitute decision-maker for any future medical treatment on a Medical Enduring Power of Attorney/Guardian form (or equivalent, depending on your state or territory). Your doctor can witness this form. You can find the form that’s relevant to your state here.

• Complete an Advance Care Directive, and give this to your doctors, other healthcare providers, your substitute decision-maker, family and anyone else involved in your care.

• Discuss any changes as soon as you think of them and make these changes to your forms.

Want more information? 

• This week is National Advance Care Planning Week. Find out how you can get involved or start a conversation about it here.
• Caresearch offers information on palliative care and dying. Visit the website here.
• You can learn more about advance care planning on the Carer Gateway site.