One of the most important pieces of paper you should carry with you when travelling is an Advance Care Document, yet very few of us do.

 

Having worked for the last 35 years as an emergency department nurse, one frustrating situation we experience over and over again is when a person becomes seriously unwell to the point where they can no longer communicate, and nobody (family, friends, GP, healthcare providers) really know what level of medical treatment they want.

On occasions this results in people receiving extensive, and invasive, and prolonged medical care against their wishes and in situations where the outcome is going to likely be a poor prognosis.

By having a pre-written Advanced Care Document, family, friends and medical staff will all have a clear understanding as to your personal wishes regarding acceptable treatments.

Unfortunately, when it comes to ACD’s there is a wide range of variations in terminology, roles, scope, obligations and recognition between states and territories making the whole thing a little confusing for both the public and to the health practitioners themselves.

Despite this it is really important to undertake some advance care planning that aligns with the related legislation and document format in your state or territory. And to have that planning available and easily accessible at all times.

How do I make an Advanced Care Document?

There are three steps to this process:

  1. Having some conversation. With yourself, your family and your doctor.
  2. Appointing a substitute decision-maker.
  3. Completing an Advance Care Directive.

Conversations.

First you need to think about exactly what it is you want with respect to medical treatment of various kinds of health problems that could affect you in the future.
What does ‘living well’ mean to you? What would an unacceptable outcome following a medical event be like to you?

Such medical events would be situations where you are unexpectedly unable to make your own medical decisions. Examples would include: brain injury following a motor vehicle accident, or a stroke, or cardiac arrest.

Alternatively these events could be situations that arise following a slow deterioration in your health (about 85% of people will die following chronic illness).
Examples would include: Alzheimer’s disease, cancer, lung disease or dementia.

Substitute decision maker:

You also need to think about who you would want making these decisions for you should you be unable to. Again, a conversation should occur with that person to make sure they are happy to take on this role, and understand your wishes (see toolkit at the bottom of this page for link to resources).

Making your ACD:

Finally you need to make your Advance Care Directive. See the toolkit at the bottom of this page with links to help you get started.

In this document you are going to make clear your wishes regarding:

  • Specific circumstances in which you do NOT want life prolonging treatments to be commenced.
  • If you always want CPR should your heart stop, or if you do NOT want it, or if you want it ONLY if the medical staff expect an acceptable recovery.
  • Any other wishes you have regarding specific treatments of your existing medical conditions.
  • Personal preferences regarding organ and tissue donation following death.
  • Any messages or information you wish to convey to family & friends if you are dying and unable to communicate.

This seems like a difficult and complex thing to think about. And it is. But it is important.
But there is information and assistance available to help you with the whole thing.
To be legally binding some ACD’s must be completed with a doctor and signed in front of a witness (see the toolkit at the bottom of this page).

Where should I keep it?

There are no clear legal provisions regarding the storage of your advance care directive. This is a problem for healthcare staff who may not know that you have one, or where it is, or if the one they are looking at is the most up to date.

One solution is to carry a copy of your current ACD as part of your physical travel documentation (as opposed to electronic copies).
AND let your next of kin/travelling companions know where it is located.
AND carry a small card in your wallet clearly identifying where the ACD may be found.

Another option is to upload a copy to My Health Record which can be accessed by health staff in an emergency.
AND carry a small card in your wallet clearly identifying where the ACD may be found.

You should also store copies with:

  • Your GP.
  • Your appointed substitute decision maker.
  • Your hospital.

Toolkit to get started:

Most of the information I have used here is from https://www.advancecareplanning.org.au they have plenty of resources to assist you.

  1. Here is a link to a booklet to help you get started with the process of writing your own advance care directive.
  2. Here is a link to the relevant forms and requirements for Advance Care Directives in your state or territory.
  3. Here is a link to information for someone appointed as a substitute decision maker.

Other information:

Review of advance care planning laws across Australia 2018 (pdf).

Posted by Ian Miller

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