Advance Care Directives and Palliative Care

5. Planning for Life and Preparing for End of Life

Topic 4 of 6

Advance Care Directive

At some future time, a person may become too unwell to make decisions about medical care for themselves. It might be a gradual decline in health or it might happen suddenly. To help in this situation you need to have in place an Advance Care Directive (ACD). This is a legal document that expresses a person’s wishes about what medical treatment they would like to receive if they become unable to express those wishes themself.

This document is only used if they are too unwell to speak for themself. An ACD is a very important part of planning for the future.

You can download the latest form here. Go to the Resources page for Legal Aid’s factsheet on Advance Care Directives.

Select each question to find out more about the ACD,

What is covered in an Advance care Directive (ACD)?

An ACD covers ‘treatment’ and care options. The details of what your elder wants at the end of life and how this is managed is up to them. Treatment options include an outline of what your elder does not want. A chat with the GP will help to talk about what a treatment option is.

An Advanced Care Directive includes your elder’s values and wishes. This may include religious, spiritual or cultural views and values. For example, would your elder prefer AC/DC or a poetry reading at end of life?

What is covered in an Advance care Directive (ACD)

Why do an Advance Care Directive?

The benefits of an Advanced Care Directive (ACD) include:

Peace of mind knowing that others will know what your elder wants
Avoiding treatment your elder does not wish to receive
Reduces worry for family and loved ones
Minimises the need to make difficult decisions under stressful circumstances
Helps to avoid conflict between family and friends because they know what your elder wants
Your elder receives the treatment they prefer
If you do not have an Enduring Guardian it has specific instructions for care
It is legally binding in Tasmania since November 2022.

Planning can be hard to talk about. What if my loved one does not want to talk about it?

Most of us are not used to talking about scenarios where we cannot make decisions. It may take time and needs some thought. There are resources to help you as a carer start the conversation and services that can guide you through.

Planning does not happen in one conversation but is ongoing as plans get changed and updated. Advance Care Planning Australia recommends that this conversation be made a normal part of the health conversation. There are some natural “beginning” points for this conversation. For example:

At an age or condition-related health assessment
A new diagnosis
When asking about treatment options.

For some help in how to do the Advance Care Directive go to Palliative Care Tasmania. They have online and face to face sessions on how to fill out an ACD. Go to the Resources section to see the conversation starter cards form Palliative Care Australia.

What is palliative care?

We have talked about ‘end of life’ decisions and an Advance Care Directive (ACD). This is all part of the palliative care process. A common misconception is that palliative care only happens when people are about to die. Sometimes palliative care can support people for many months or even years. For more information go to Palliative Care Australia

Early referral to palliative care can often prolong life and supports better quality of life. This is what palliative care can include.

1

Pain relief, medication management and relief from other symptoms.

Equipment needed to care at home.

2

Advice, support and resources for nutrition, mobility, sleep and other important aspects of everyday life.

Education, counselling and support for family and friend carers.

3

Planning, resources and links to help get the right information and talk about sensitive issues.

4

Support for cultural, emotional and spiritual concerns.

5

Grief support such as counselling, referrals and bereavement care.

6

Having choice and control over decisions knowing that your wishes will be followed (by law) reduces stress and increases quality of life. That is what palliative care nurses and practitioners are good at. They will encourage discussions about what your elder wants to achieve, how much medical treatment they want to go through and make sure that, through an ACD, these wishes are recorded.