Advance care planning

Advance Care Planning is a process by which you reflect upon and document your personal values and preferences, to be used as a guide to your future health care in the event that you become unable to speak for yourself. It is about taking control of your health care wishes now and into the future.

Should you become seriously ill and not able to make or communicate your own decisions then your doctors and those you love will want to know your treatment preferences and your wishes into the future. If these preferences and wishes are documented in advance it will be of great help to everyone involved and avoid disagreements. Dying with Dignity NSW recommends that you write a plan while you are well, or in the early stage of dementia.

The most important steps in the process of advance care planning are:

• discussing your health care wishes with your family, close friends and your doctor.
• thinking about what treatments you would want to have, and which you would refuse.
• writing down your wishes in an “Advance Care Directive”
• choosing a trusted person to be your “Enduring Guardian”. This is a person, or persons, who knows you and your wishes and whom you would trust to make decisions about your medical care if you are not able to.

An advance care plan normally results in two completed and signed documents:

• An Advance Care Directive in which you clearly state your wishes in relation to your medical treatment.
• An Appointment of Enduring Guardianship.

These documents will remain in force until they are required, if ever, or until you write a new advance care plan if your health or circumstances change.

Dying with Dignity NSW have prepared a guide to help you understand what you need to know about the planning process, choosing the right form for you and advice on how to go about completing the forms.

It also includes a section of Things to discuss with my family and friends before completing an Advance Care Directive

Click here for the DWD NSW Guide to advance care planning in NSW February 2018

Dying with Dignity NSW provides a set of printed advance care planning forms to all new members. From March 2018, the set consists of four printed documents. The provision of these documents is done as a service to our members and to encourage them to start having conversations with their friends and family about their end-of-life choices.

For those members who want additional copies of the documents, or non-members who want printed documents, we have provided the links to so that you can download these forms for free, if you have access to a printer:

1. DWD NSW Guide to advance care planning in NSW February 2018

2. NSW Appointment of enduring guardianship form (2018)

3. NSW advance care directive by Prof Cartwright (2018 edition)

4. NSW advance care directive by the NSW Ministry of Health 2017

The NSW Health Department stated in 2017 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.”

Since 2008, the Board of Dying with Dignity NSW has endorsed an advance care directive created by Professor Colleen Cartwright (PhD (UQ), MPH (UQ), B Soc Wk (Hons) (UQ), ADA (Drama) (NRCAE). This form is considered to be comprehensive, specific enough to guide complex medical decisions, and widely endorsed by Australian health professionals. It has been updated By Professor Cartwright several times over the years.

Since May 2017 the NSW Health Department has been trialling a new advance care directive. It is a shorter, more values-based form, which may be simpler for some people to use. It does not attempt to cover all possible medical situations, but records statements about your personal your values which could be very helpful for the person responsible for making health decisions on your behalf. See the NSW Health Dept webpage for the form and the accompanying information

We would love to be able to provide printed forms to everyone who asks for them, but we need to cover our printing and postage costs.

The nomination of an Enduring Guardian is legally binding under The NSW Guardianship Act 1987. Conversely, NSW does not have a specific statute governing Advance Care Directives, but they are legally binding under common law (as confirmed by NSW Supreme Court in 2009), provided the person is mentally competent at the time of completing their directive and it has been made free from coercion.

The legally binding effect of an Advance Care Directive is confined to refusals of treatment. A demand or request in an Advance Care Directive for a particular form of treatment does not mean the health care provider is legally obliged to provide it. However, but it may be considered as indicating your consent to the treatment. In addition, the preferences you make in your Advance Care Directive are likely to be taken into account by anyone concerned with promoting your best interests at a time when you are unable to speak for yourself.

Please be aware that Advance Care Planning does not enable you to access treatments which are against the law at the time and place of your treatment. Voluntary Assisted Dying is currently against the law throughout Australia, but Dying with Dignity NSW hopes that this will not always be the case.

To help you to understand how end-of-life choices are made in an actual medical situation, you may find it helpful to listen to the speech given by Professor Colleen Cartwright at the DWD NSW Annual General Meeting on 27 May 2017, entitled ‘End of Life Options – The Key Issues’. Click for video (59 mins)

Professor Colleen Cartwright

Dying with Dignity NSW has compiled a list of resources to enable you to get more information about Advance Care Planning (if you wish). The list is not exhaustive, and is current at February 2018.

• The NSW Government Planning Ahead Tools provides information and advice for future legal, health and financial decisions – Ph 1300 887 529

• NSW Health – Making an Advance Care Directive – information booklet and form; What is Advance Care Planning?,

• Professor Colleen Cartwright’s website as Principal Director of Cartwright Consulting Australia P/L, which has free downloadable forms and other information.

• NSW Trustee and Guardian Ph 1300 364 103 provides resources related to appointment of enduring guardianship, revocation of appointment of enduring guardian and notice of resignation as enduring guardian. They also have information about appointment of power of attorney (financial matters) and will making.

• Advance Care Planning Australia – includes information in other languages – Phone 1300 208 582

• Dementia Australia (previously Alzheimer’s Australia) – see Planning for the end of life for people with Dementia– or call the National Dementia Helpline on 1800 100 500

• The NSW Dept of Health – Dignity, Respect and Choice: Advance Care Planning for End of Life for People with Mental Illness is designed to help support people with mental illness, their families and carers and health professionals – available in eleven languages

• The Law Society of NSW – use their Solicitor Referral Service to find a local solicitor with experience in this area or phone 02 9926 0300 (Sydney) or 1800 422 713 (outside Sydney)

• Sydney Local Area Health – My wishes advance care planning – documents and information in many languages; plus Ambulance Authorised Palliative Care Plan

• For more information and to register for organ and/or tissue donation at The Organ and Tissue Authority website  or phone 1800 777 203 to request a posted registration form.

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If you would like to understand more about death and dying generally, rather than advance care planning specifically, you may like the following websites:

• End of life law in Australia by Queensland University of Technology – this website is designed to be used by patients, families, health and legal practitioners, the media, policymakers and the broader community to access information about Australian laws relating to death, dying and decision-making at the end of life.

• Life Circle Australia – They want dying to be understood as a natural part of life. Life Circle aims to connect people who are caring for a dying family member or friend to information and advice to help them make choices about end of life matters.

• The Groundswell Project – their vision is that when someone is dying, caring or grieving, we all know what to do. They started the celebration of Dying to Know You Day on 8 August each year.