Everyone can benefit from advanced care planning, regardless of age or health. It can be particularly important if you live with a chronic illness, such as mitochondrial disease (mito).

You can start planning as early as possible before there’s an urgent need for a plan.

What is advance care planning?

Advance care planning is the process of planning for your future health care. It relates to health care you would or would not like to receive if you were to become seriously ill or injured, and are unable to communicate your preferences or make decisions.

Advance care planning allows you to think about, discuss and record your preferences for the type of care you would receive, and the outcomes you would consider acceptable. It helps to ensure your loved ones and doctors know what your health and personal preferences are.

Ideally, advance care planning will result in your preferences being documented in a plan known as an Advance Care Directive, and the appointment of a substitute decision-maker to help ensure your preferences are respected.

Did you know that almost one in three of us will be unable to make our own medical decisions at the end of our lives? Get all the information you need, no matter which state or territory you live in. Create your plan and find forms here.

What to consider

Consider your beliefs, values and preferences for your current and future health. This is no different to arranging your life insurance or your will.

 

82% of Australians think it’s important to talk to their family about how they want to be cared for at the end of their lives.1

1

Speak to your family and others close to you about your views and preferences for your medical care. The more your loved ones understand your preferences, the easier it will be for them to help guide your medical treatment.

Communication approaches and strategies

You might want to discuss your own plan with your family, friends or support network. For these conversations, choose a quiet setting where you have a lot of time, and won’t be interrupted. You don’t need to talk about everything all at once and remember that advance care planning is an ongoing conversation.

Some conversation starter ideas:

 “…is important to me to live well”

“If … happened to me, I would want …”

“For me, a life worth living is where I …”

“I was thinking about what happened to…, and it made me realise that…”

1

Record your choices

Finally, record your wishes in an Advance Care Directive. This document is considered an extension of your wishes and will only be used if you are unable to communicate. When validly made, an Advance Care Directive must be followed and is legally enforceable in some states, such as NSW. No one can override it, including the medical team, family or substitute decision maker.

An Advance Care Directive is considered a legal document, but it does not require the involvement of a solicitor. Its role is to guide your loved ones and health care team so that they can provide care that is inline and respectful of your preferences and values.

Before documenting your plan, ensure you have an understanding of the requirements in your state or territory.

Sample statements suitable for an Advance Care Directive:

  • “Based on my religion, I do not wish to receive a blood transfusion”
  • “I would like flowers and music in my room”
  • “I wish to receive palliative care at home, not in a hospital”
  • “If my lungs stop functioning, I do not want assisted ventilation to support my breathing”
  • “If I become incontinent and rely on others to move and wash me, I do not want life-prolonging treatment”

After creating your Advance Care Directive, share copies with your substitute decision-maker/s, family, friends, and health professionals. You could also consider uploading it to My Health Record.

An Advance Care Directive may have a different title depending on your state or territory. Other titles may be:

  • Health Direction
  • Advance Personal Plan
  • Advance Health Directive

In summary

  • Discuss any questions regarding your future health and medical management with your doctor
  • Seek advice from the National Advance Care Planning Support Service, formally the National Advanced Care Planning Advisory Service
  • Appoint your substitute decision-maker/s
  • Discuss your preferences with your substitute decision-maker/s
  • Detail your preferences in an Advance Care Directive
  • Share your Advance Care Directive with your substitute decision-maker/s, family, friends and medical team.

Useful links

Disclaimer: Resources provided by the Australian Mitochondrial Disease Foundation Limited (Mito Foundation), offers general information and is not a substitute for medical advice. It is essential to assess the suitability of the content for your individual circumstances and make decisions based on your medical condition. The information’s accuracy is subject to change, and we do not guarantee ongoing currency or availability. While efforts are made to ensure accuracy, Mito Foundation is not obligated to provide updated information. The copyright for this document and its content belongs to, or is licensed to, Mito Foundation, and reproduction without prior written consent is prohibited.

Author(s): Mito Foundation
Version: 2
Last reviewed: 9 May 2024

Feedback