Dialog Box

Rare Cancers Australia

Advance Care Planning

The world seems so different during a pandemic – especially so given the severity and the many unknowns of SARS-CoV-2. And yet, this uncertainty and disquiet may not be new to those living with cancer. There is a certain resilience in those who live in a world where uncertainty is usual. Perhaps it is a good time to consider a plan for your future medical treatment care – an Advanced Care Directive (ACD). Advance Care planning doesn’t mean that you have ‘given up’ or are imminently dying, but it may provide security to know that you have planned for that time, and now you can focus on your treatment and living each day.  

Why do you need to do this? 

You need to create an ACD, not because you have a life-threatening illness, but because you have a family. 

Studies show that families of those who have completed these documents (which only come into effect when you are unable to make decisions for yourself) feel less stress and anxiety about dealing with those important treatment decisions. 

If you can’t speak for yourself, and tell those around you what you want, who do you want to speak for you?  

What values do you need known if you can’t speak for yourself?  

Are there treatments you would definitely consent to or refuse? 

Here are some helpful tools to get you thinking:  Dying To Talk   My Values 

Your values and preferences should also be discussed with trusted family members, friends and your healthcare team so that they’re able to make decisions in line with what you’d want for your end-of-life care, in case your ability to communicate is compromised. It also needs to be straightforward and understandable because one of the main times this will be used is in an emergency situation.  

This process is called Advance Care Planning, and it can be as simple or detailed as you’d like, incorporating your religious, spiritual or cultural beliefs that may affect your healthcare decisions. You need to be an adult and have capacity to complete Advance Care documents.  

This process often involves appointing a Medical Treatment Decision Maker (MTDM), and completing an ACD. This includes a values directive, which is a statement of your values and preferences for your medical treatment.  

A Medical Treatment Decision Maker will speak for you if you don’t have capacity, and, in contrast to Power of Attorney (POA), they need to represent your values – in fact, they’ll need to sign to accept that they do represent your values. If you don’t have a nominated MTDM, it’ll be decided from a list of those who are in a close and continuing relationship with you. The MTDM will use your values directive to guide them to make decisions for you.  

An Instructional Directive is a legally-binding statement in which you consent to, or refuse future medical treatment, and it essentially speaks for you – it is treated like you are speaking directly to the doctor, in the case of you being unable to communicate. You do not have to complete the Instructional Directive, however it is necessary if you have very strong views about what you do or don’t want in future. Instructions about refusal or consent to treatments in this document will be followed by your healthcare practitioner, so it’s necessary to be aware that this could be acted on in situations you may not have considered. Knowing that completing this is optional (as is the expiry date), but so important, you might want to discuss it with your doctor.  

For an ACD, you can complete: 

  • an Instructional Directive + Values Directive; or 

  • just an Instructional Directive; or 

  • just a Values Directive 

Then you must sign it and have it witnessed.  

  • MTDM forms: need minimum of 4 people (you, an authorised witness / doctor, another adult witness, your MTDM – to accept the appointment) 

  • ACD forms: need 3 people (you, a doctor, another adult witness) 

*Neither adult witness can be the nominated MTDM. 

**If an interpreter is involved, they will also need to sign. 

***You don’t need a lawyer. 

The witnesses should confirm that the person can tell them:  

  1. What decisions the MTDM will be able to make; 

  2. When they will have the authority to make these decisions; 

  3. The effects that these decisions could have; 

  4. They can cancel the MTDM appointment while they have decision-making capacity.

Unfortunately there is no central repository for ACDs or MTDM appointments, so it is up to you to share this information – it is really important to let your healthcare team know that you have created one. 

  • You can get your GP to certify all 4 copies; 

  • Keep your original with your other important documents; 

  • Give a certified copy to your MTDM, your GP / specialists / healthcare providers involved, the local health service (your GP can send it so they can add it to the health record alerts); 

  • Scan a certified copy as a PDF, then you can add to your phone’s home screen, and add to your My Health Record: Click Here  

More information can be found at Advance Care Planning Australia, with more detail about the different laws in each state or territory: Click Here 


23 April 2020
Category: News