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End of Life Care

It's something that many find difficult to talk about, but end of life care planning can improve the management of a patient's health conditions and help to keep people out of hospital unless it is absolutely necessary.

In our region, around 1,600 people would benefit from some form of end of life care each year, which equates to more than 133 people each month.

End of Life care planning is managed through Advance Care Planning and Advance Care Directives. We have also just released an End of Life Care Report, making recommendations about how to improve local End of Life Care conversations and planning. 

Talk to your patients

We are asking GPs to encourage their patients to start a conversation about their wishes for end of life care, or advance care planning. 

This should lead to the development of an advance care directive - which is a document capturing these plans. A number of resources are available to assist you in setting up an advance care directive for your patient.

  1. NSW Ambulance offers an Authorised Care Plan document (order a hard copy) that can be completed with your patient and a General Practitioner Information Kit about Authorised Palliative Care Plans.
  2. My Health Record - you can upload an Advance Care Directive document to your patient's My Health Record. Advance Care Planning documents can be uploaded to My Health Record by patients and can be viewed by their GP or other registered clinicians with permission.
  3. The RACP offers an Advance Care Planning position statement for general practice.
  4. Advanced Care Planning Australia provides information and resources to general practice staff on how to manage Advance Care Planning, along with guidance on the use of MBS items
  5. The NBM HealthPathways website offers Palliative Care pathways and information. 
  6. ELDAC (End of Life Directions for Aged Care) provide an evidence based Primary Care Toolkit to support palliative care and advance care planning. 

Healthdirect Australia operates the NSW Palliative Care After-Hours Helpline (1800 548 225) which provides support to people who are receiving palliative care. It also assists health professionals, such as GPs, to support palliative care patients who choose to remain at home.

The PEACH (Palliative Care Home Support Packages) Program provides care packages to palliative care patients in their last days of life who wish to die at home. GPs can refer eligible palliative care patients by contacting the PEACH Co-ordinator in NBMLHD on 0447 994 934.

As a result, we have released the End of Life Care Report

We are currently working with The Groundswell Project to pilot a model of end of life care in the Blue Mountains – Our Compassionate City.

Advance Care Planning and Advance Care Directive

It can be helpful to understand the difference between these two things:

Advance Care Planning (ACP) is the process of developing future plans for a person's health and personal care that respects their values, beliefs and preferences. Advance care planning involves discussion with health professionals, family and friends, and could include a written advance care directive. 

Advance Care Directive (ACD) is a planning document written by a person with capacity that is authorised by common law or by legislation (laws vary across Australia). In NSW, advance care directives are recognised at common law. The NSW Guardianship Act 1987 provides substitute decision makers through the 'person responsible' hierarchy and allows appointed Enduring Guardians to consent to end of life decisions. 

An advance care directive can either:

1. Record a person's values, life goals and preferred outcomes, or directions about medical treatment and care (an instructional directive); or

2. Formally appoint a substitute decision maker (Enduring Guardian); or

3. Do both of these things. 

NBMPHN End of Life Care Project

The facts are pretty sobering*:

  • 75% of us have not had end of life discussions
  • 60% think we don’t talk about death enough
  • Over 70% of us die in hospital though most of us would prefer to die at home
  • Very few of us die with an advance care plan (less than 10 percent)
  • The number of Australians aged 65 and over will double by 2050 increasing our need to plan while well and share our wishes with our loved ones

* Source:

In addition to supporting GPs with information and resources to help you conducting advance care planning with relevant patients, our End of Life project aims to improve the process around end of life care for people in our region, by: 

  • identifying the strengths and areas of development across the region in relation to end of life care in Primary Care and Residential Aged Care Facilities, and
  • identifying opportunities and strategies to address these needs which will lead to the commissioning of a pilot across the region.

A series of workshops were held in 2017 to provide a forum for presenting and seeking review of findings from the research being undertaken. These workshops will involve key stakeholders, including Palliative and Chronic Care Specialists and Clinical Nurse Consultants, Residential Aged Care Clinical Nurse Consultants, Western Sydney University Sociology/ Psychology Academics, GPs and NSW Ambulance. 

As a result, we have released the End of life Care Report

By the conclusion of the project, we will also have a commissioning model for a pilot.

Early Findings

While it is still early days, our initial findings indicate indicate an underlying issue that then compounds every other issue. People are not comfortable talking about death. This forces end of life care discussions to happen during the time of crisis, when decisions may be less considered or made by people other than the person in the end of life stage. By talking and planning end of life care earlier, more suitable plans can be arranged and responded to when the time comes.

So far, other issues raised are in relation to the availability of culturally appropriate services, and providers having the capacity and capability to identify the right time to start these discussions and how to escalate them.

More Information

For more information, please call Janice Peterson on 4708 8100 or contact us online