What is Advance Care Planning?

Planning ahead for your health care.

A time could come for any of us when we are not able to make decisions for ourselves - for example after a car accident or at a time when a chronic illness worsens. Because of this, some people find it can be helpful to think in advance about the answers to the following questions.

  • Who would speak for me if I was not able to speak for myself?
  • Who would I want to make medical decisions for me if I was not able to make them myself?
  • Would that person know what I want?
  • What sorts of things are important and meaningful for me in life?
  • What does living well mean to me?
  • Do I think there would be any disagreement among my family/friends/carers about my wishes?
  • Do I know what medical treatments I would want, or not want, if the doctors thought I was unlikely to survive?
  • Do I know where I would want to be cared for if I was not able to care for myself?
  • Does the person who might be asked to make healthcare decisions for me know about my thoughts and answers to these questions?

What does advance care planning involve?

Advance Care Planning is a process of planning for future health. It involves thinking about the questions above and other matters that are important to you. It involves finding the right time to do that – ideally not in at a time of crisis. It should take place at a time that works best for you.

The NSW Planning Ahead Tools has a lot of information that has been developed for people in NSW. 

Advance Care Planning should include:

  • talking to your family and other people close to you about your wishes, values and beliefs about medical care and treatment towards the end of your life
  • talking to your doctor and other health professionals about any medical or health issues you have, what treatments are available and what choices you would like to make about your medical care
  • thinking about what treatments you would want to have that may prolong your life, and what treatments you would refuse
  • knowing who would make medical decisions for you if you were unable to make your own decisions
  • writing down your wishes with a heath care professional.

Advance care planning can involve thinking about lifestyle decisions as well as decisions about health.

In summary, advance care planning is about guiding the person who could be called upon to be your decision-maker about your life goals; beliefs; values; your attitudes towards treatments; and the personal and cultural issues that are important to you.

Why might Advance Care Planning be a good idea?

Advance Care Planning can help to:

  • Reduce the burden of decision-making on your family, carers or decision-makers during crisis situations. With good Advance Care Planning having been done, those people who are called upon to make decisions for you can have a clearer understanding of your wishes.
  • Reduce stress for your family, carers or decision-makers, if a time comes when you cannot make decisions for yourself and they are called upon to give input about healthcare decisions for you.
  • Clarify, and guide others about, which treatments you might, or might not want.
  • Give you peace of mind.

Above all, Advance Care Planning allows your voice to be heard if a time were to come when you could not make your own healthcare decisions.

When should I think about commencing Advanced Care Planning?

Anyone can do Advance Care Planning.

Some particular groups that should consider Advance Care Planning are:

  • Aged or older people who are frail
  • People of any age with chronic progressive and life-limiting conditions
  • People approaching end of life
  • People with multiple health conditions
  • People with early cognitive impairment
  • People who are regularly admitted to hospital
  • People who are having significant medical or surgical treatments

A good time to do Advance Care Planning is when your health is stable.

What documents can be used for Advance Care Planning?

Advance care planning involves having good discussions with the people who could be involved in decision-making about your care in the future. It is important to understand who will be asked to represent your views, in the event you are unable to speak for yourself.  Some people are comfortable simply having a good discussion with the person who would speak for them if a time were to come when they were not able to speak for themselves. Some people choose to write down their plans so that their wishes can be clear. The documents that may be used for advance care planning include:

An enduring guardian appointment document: This document allows you to legally identify a person who could speak for you about healthcare decisions and who can act as a substitute decision maker- in NSW this is called appointing an Enduring Guardian. You should speak to your independent legal advisor if you wish to appoint an enduring guardian.

An Advance Care Plan: An Advance Care Plan can be used to describe your goals and values, attitudes towards treatments, and the personal and cultural issues that are important to you - things that you want those who might be making health care decisions for you to be aware of. An Advance Care Plan is prepared from your perspective and is used to help those who might be involved in your future healthcare decision making. That is if a time were to come when you were unable to speak or otherwise communicate your wishes for yourself. If you would like to prepare an Advance Care Plan you should consider involving your family or ‘person responsible’ in the process so they are aware of your wishes. We also suggest you speak with your GP, medical specialist or treating healthcare team.

An Advance Care Directive:  An Advance Care Directive (ACD) is part of Advance Care Planning and if prepared in compliance with all the requirements, is a legally binding document in NSW. An Advance Care Directive is used if you wish to document specific and binding instructions about your future healthcare. An Advance Care Directive can only be made by you as an adult at a time when you have recognised decision-making capacity. A valid Advance Care Directive must be followed. You can document an Advance Care Directive in different ways and we suggest that you seek advice on the various ways and the best option for you.  You also should consider involving your family or ‘person responsible’ in the process so they are aware of your wishes. As for an Advance Care Plan, when you are preparing an Advance Care Directive, we suggest you speak with your GP, medical specialist or treating healthcare team. We also suggest you speak with your legal advisor. 

Further information about making an ACD can be found online at https://www.health.nsw.gov.au/patients/acp/Publications/acd-form-info-book.pdf

Advance Care Planning and the use of an Advance Care Plan or Directive document are always optional. Effective advance care planning, importantly, involves communication with those who might be involved in healthcare decision making for you, but does not necessarily require the completion of a Plan or Directive.

Where can I find more about the process and documents for Advance Care Planning?

Appointing an Enduring Guardian:

You can talk with your legal advisor or start by reading about and finding information for people residing in NSW 

Making an Advance Care Plan or Directive:

As different people like to explore this topic differently, depending on their perspectives and needs, we have provided a number of different resources about making plans and directives on this website. You can document an Advance Care Plan or Directive in different ways in NSW and we suggest that you seek advice on the various ways and the best option for you. Two examples are below.

Start2Talk is a part of the Alzheimer’s Australia website that has been developed to help all Australians, not only for people with Alzheimers’s Disease.

A planning worksheet booklet is available from this site which has sections that focus on a number of aspects of planning that relate to your home life and health, including sections for making an Advance Care Plan and an Advance Care Directive.

This worksheet can be found here.