Advanced Care Planning

What is it?

  • An advanced care plan involves discussing and writing down your wishes and preferences for future medical and personal care in case you lose decision-making capacity at some point in your life.
  • It involves you reflecting on your values and beliefs to make decisions about how you would like to be treated medically and personally in the future.
  • It also involves sharing these decisions with people who are close to you, naming a medical treatment decision making and naming a support person.

Why is it important?

  • Unfortunately, it is possible that any of us may either suddenly or over a gradual period of time lose the capacity to make medical decisions for ourselves.
  • This may be due to being in a car accident and sustaining a traumatic brain injury without any warning, due to ongoing worsening of dementia in old age, or due to being diagnosed with a neurodegenerative condition such as motor neurone disease.
  • No matter the reason, it is important that you have made your wishes clear and concise for your family, close friends, and medical team so that even in the situation where you cannot actively participate in your medical treatment, your rights to autonomy and control over your healthcare is respected. It ensures patient-centred care no matter what the circumstances.
  • It is also important so that the person you deem to be your medical decision maker is aware of your wishes and the choices you would make, as this will make them more comfortable to make decisions on your behalf.

Do I need one?

  • It is recommended that everyone has an advanced care plan because life can throw up unforeseen and sudden events, such as being in a motor vehicle accident. In these situations, no matter how healthy or young you are, you could find yourself in a situation where you no longer have the ability to make medical decisions.
  • It is strongly recommended that some groups in particular start advanced care planning:
    • Elderly and/or frail people
    • People approaching the end of their life
    • People living with a chronic or terminal illness
    • People living with many comorbidities that increase their risk of mortality
    • People who have a disability, physical or cognitive impairment
    • People who are socially isolated or vulnerable

What is the process?

  • Start by thinking about what medical care you would like in the future if, for some reason, you could not make these decisions at the time. Base these desires on your personal beliefs and values. Some common questions to think about include:
    • Would I want to live if I couldn’t use my arms or legs?
    • Would I want to have invasive ventilation to help me breathe? If so, for how long?
    • Would I want to have a feeding tube if I couldn’t eat? If so, for how long?
    • Would I want to have palliative care? Who would I like to be a part of my palliative care team? Where would I want my care to take place?
    • Where would I like to pass away? Who would I want with me? Would I want to die in a hospital or at home?
    • Would I want to be resuscitated if I went into cardiac arrest?
    • Would I like to donate my organs after my death?
  • Discuss your wishes with your family and doctors. This is important both so that you have emotional support during the planning process and so that those around you are all aware of your wishes and preferences.
  • Formalised your planning into an advanced care directive. An advanced care directive is a legally recognised document that by law must be respected and followed by your health practitioners and medical treatment decision-makers.
  • Give your advanced care directors to others. Always keep an original copy of yourself but also provide copies to your doctor, family, medical decision maker and the hospital that you most often use. This ensures that the wishes you have outlined in the document will be found and actioned.

What are the benefits?

Source: Advanced care planning: have the conversation. A strategy for Victorian health services 2014-2018.

Can I change it over time?

  • Of course. It is recommended that you regularly review your advanced care plan so that it stays current to your values, beliefs and wishes. Common reasons to review your plan include:
    • Being hospitalised for a deterioration in a chronic illness
    • Being diagnosed with a new chronic or life-limiting illness
    • Having a change in family dynamics or relationships that may change who you would like to be your medical decision maker
  • It is also recommended that you share any changes you make with your family, doctor and medical decision maker, and provide them with a new updated copy of your advanced care directive with the included changes.

How do I write it?

  • Write down your wishes and preferences by yourself, make copies, and share these with your family, doctor and medical decision maker
  • Ask for an advanced care directive form at your next doctor’s visit
  • Download the advanced care directive form provided on your State Government’s Department of Health website
  • Contact a lawyer to discuss formalising your advanced care plan