Advance Care Planning and End of Life Care Newsletter - July 2017Welcome to the quarterly Advance Care Planning and End of Life Newsletter, which is jointly published by the Agency for Clinical Innovation (ACI), Clinical Excellence Commission (CEC) and the NSW Ministry of Health.

The newsletter provides updates on ACI, CEC and Ministry Advance Care Planning and End of Life projects and a guest spot for a local health district (LHD), specialty health network (SHN) or pillar to provide information on their initiatives. If you would like to showcase a local initiative in the newsletters please email:

In this edition

Guest article: An Advance Care Directive (ACD) and other information

Following an extensive consultation process, the NSW Ministry of Health is pleased to release the Making an Advance Care Directive package.

The package includes an Advance Care Directive form and an Information Booklet. It is available on the Ministry of Health’s website at Making an Advance Care Directive - form and information booklet and is also available on the NSW Government’s website Planning Ahead Tools.

This package is one of many advance care planning and end of life resources that are available for use. The Advance Care Directive in this package does not replace or void any other existing Advance Care Directives that are being used in NSW. The package builds on the current options as well as provide a guide and a better legal and clinical framework to some of these options.

The purpose of the Information Booklet is to provide information to help people understand and complete an Advance Care Directive in NSW. The Information Booklet outlines some key questions that people face when discussing Advance Care Directives, these include:

  • what is an Advance Care Directive?
  • why an Advance Care Directive is important?
  • how to prepare for making an Advance Care Directive
  • how to make an Advance Care Directive
  • when it applies and when is it valid.

The document is currently being trialled as part of a project by South Eastern Sydney Local Health District. Following the evaluation of this project, the Ministry will consider if any changes to the document are required.

It is important to note that in NSW a person does not need to use a specific form to record their wishes, therefore all Advance Care Directives must be respected.

More information

For more information on the Advance Care Directive form and Information Booklet contact:
The Office of the Chief Health Officer
Phone: (02) 9391 9188

Agency for Clinical Innovation's project update

The ACI and the CEC in consultation with the Health and Social Policy Branch at the NSW Ministry of Health are continuing their series of collaborative planning workshops on palliative and end of life care.

The workshops provide opportunities to explore local issues, map activities across the 10 Essential Components of Care contained in ‘the Blueprint for Improvement’ and to develop and refine local plans.

To date, every Local Health District and Specialty Health Network has expressed interest in tailoring a unique event based on local priorities. The formats and topics have varied.

Some districts have developed a full day program to showcase examples of best practice and key relationships among service providers as well as highlighting some ongoing challenges. Other districts have designed a shorter, targeted event that focussed on problem solving and action planning on local issues.

The workshop series will work towards building a networked approach to improvement across NSW by supporting people to come together, learn from each other and ultimately improve care for people at the end of their life, their families and carers.

More information

For more information contact
Rob Wilkins, Manager, ACI Palliative Care Network
Phone: (02) 9464 4741

Clinical Excellence Commission's project update

The End of Life program provides clinicians with the support and tools to ensure safe, quality end of life care for patients in NSW.

AMBER care bundle

The AMBER care bundle provides a framework to encourage clinicians, patients and families to continue with treatment, in the hope of a recovery, whilst talking openly about preferences and wishes, and putting plans in place for end of life.

Deciding what ‘uncertain recovery’ is has led to the change of one of the trigger questions. The two identification questions are now:

  1. is the patient deteriorating, clinically unstable with limited reversibility; and
  2. is the patient at risk of dying during this episode of care despite treatment?

'Last Days of Life' Toolkit

The toolkit was piloted between September and December 2016. The main finding was that when dying patients were cared for using a standardised approach there was a higher percent of their care being more structured i.e. symptoms and comfort assessed routinely and medications given within a best practice model. Also there was a decrease in the harm to patients.

The toolkit was released in May 2017 and is available on the CEC’s Last Days of Life Toolkit.

More information

For more information contact:
Phone: (02) 9269 5596

NSW Ministry of Health update

Advance Care Directive form and information booklet

Advance care planning plays a key role in improving the quality of end of life care by providing people with a way to convey their wishes about medical treatment and care at a time when they can no longer express them.

It is best done when people have the time and space to think about and discuss their wishes with their health practitioner and close family and friends.

Early advance care planning can help to prevent:

  • continued unwanted and/or unwarranted life-sustaining measures being instigated
  • poor experiences for families facing end of life decisions
  • potentially avoidable conflicts between families and the health care team
  • end of life care being delivered in hospital settings rather than in community or home environments.

That is why following extensive consultations the Ministry of Health released an Advance Care Directive form and Information Booklet. This package is available at the Ministry’s webpage: Making an Advance Care Directive - form and information booklet

The package is also available on the NSW Government’s webpage Planning Ahead Tools.

More information

For more information on advance care planning and end of life care contact:
Phone: (02) 9391 9188

Current as at: Friday 9 August 2019
Contact page owner: Health and Social Policy