Advance Care Planning and Palliative Care

Advance care planning 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 discussions with health professionals, family and friends and could include a written advance care directive. In NSW it is recommended that a person appoints an Enduring Guardian (a person legally appointed to make decisions about a person’s health and lifestyle in the event they cannot make these decisions for themselves) and complete an Advance Care Directive.

Advance Care Directives

An Advance Care Directive is sometimes called a living will. It is a formal planning document written by a person with decision making capacity that is authorised by common law or by legislation. In NSW, Advance Care Directives are recognised by 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.

An Advance Care Directive and the role of the substitute decision-maker comes into effect only when the person loses decision-making capacity.

The Australian Department of Health, Disability and Ageing’s National Framework for Advance Care Planning Documents contains a checklist for creating Advance Care Directives.

There are a number of resources about advance care planning available to assist health professionals and the community.

Advance Care Planning Resources

• Advance Care Planning Australia – provides free advice for the community and health professionals. You can speak to someone in-person by calling their National Advance Care Planning Support line.
• NSW Health – provides information on advance care planning for the community.
• NSW Health – provides information on appointing an Enduring Guardian.
• NSW Health – provides an Advance Care Directive template and an Information Booklet to help people complete an Advance Care Directive.
• My Health Record – provides information on how to upload advance care planning documents to My Health Record.
• NSW Ambulance – provides information about Authorised Care Plans.

Advance Care Planning Resources for Health Professionals

• HealthPathways – provides a comprehensive Advance Care Planning pathway with information, resources and templates. It also contains instructions on importing Advance Care Directive forms into clinical software for both Best Practice and Medical Director.
• NSW Health – provides information for health professionals.
• The RACGP – provides an Advance Care Planning Position Statement for general practice.
• End-of-Life Directions for Aged Care (ELDAC) – provide an evidence based Primary Care Toolkit to support advance care planning and palliative care.
• Primary Care and Community Health (PCCH) and the Supportive and Palliative Care Service – community based end-of-life care previously provided under the PEACH Program will now be coordinated and delivered by the PCCH and the Supportive and Palliative Care Service. The End-of-Life and Palliative Care Coordinator is the single point of contact for end-of-life referrals and advice and can be contacted on 0456 953 341.

Palliative care is specialised support that helps people with a life‑limiting illness live as comfortably and fully as possible, focusing on quality of life for both the person and their family.

There are a number of resources about palliative care available to assist health professionals and the community.

Palliative Care Resources

• Our Live Well Palliative Care Patient Flyer – provides information and resources for patients and their families.
• Our My Health Connector website – provides a listing of local end-of-life care services in the region.
• The Nepean Blue Mountains Local Health District – provides information and resources for patients and their families residing in the region.
• The Department of Health, Disability and Ageing – provides information and resources for patients and their families.
• Palliative Care Australia (PCA) – the national peak body for palliative care provides resources for patients, carers and health professionals.
• The Palliative Care Bridge – provides educational videos and resources for patients and health professionals.
• Healthdirect Australia – provides 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.

Palliative Care Resources for Health Professionals

• We provide education and training for health professionals on a range of palliative care topics, including medication management.
• HealthPathways Palliative Care pathway – provides health professionals with local information, resources and referral options.
• End-of-Life Directions for Aged Care (ELDAC) – provides information, guidance and resources for health professionals and aged care workers to support palliative care and advance care planning.
• The ELDAC Residential Aged Care Toolkit – provides palliative care planning support for residential aged care.
• palliAGED – provides the aged care sector with palliative care information, guidance and resources.
• The Program of Experience in the Palliative Approach (PEPA) – provides education and training to the health professionals and delivers programs for priority healthcare provider groups across primary, secondary and tertiary settings.
• University of Wollongong Palliative Care Outcomes Collaboration (PCOC) – provides a framework for palliative care service providers to enable practitioners to generate consistent information to appropriately plan and deliver care.