We’re used to making plans for the future – for outings and holidays, for family events and celebrations. From writing a will to buying insurance, we’ve made plans for our future throughout our lives. Advance care planning is similar. It’s about looking ahead to a time that might come when, due to ill health, you are unable to communicate your own decisions about your health or personal care.
Advance care and end of life planning asks you to think deeply about your preferences and values, should you fall ill, and to express your wishes in advance of this time. In effect, it’s an assurance, rather than an insurance policy. It means that, if the time comes and you are too unwell to share your preferences, your family, care workers and health professionals will know what you would like them to do and they can respect your wishes.
Too many of us leave our preferences unspoken, and too often this causes anxiety and stress for family members, loved ones and health carers. It’s estimated that four in ten Australians will be unable to make their own end-of-life medical decisions, yet only 25% of Australians aged over 65 have completed an Advance Care Directive, communicating their health-care preferences for such an eventuality.
Starting the conversation
To help you get started, ask yourself the following questions:
- What makes life worth living?
- What is good quality of life?
- Who would I nominate to make medical decisions on my behalf?
- What kinds of healthcare decisions would I want them to make?
- Is there any medical intervention or treatment I would prefer not to have?
- Are there any aftereffects of treatment that would be unacceptable? For example, loss of independence.
If you’re a family member wanting to begin the conversation, although it might not be easy, it’s important to start the discussion. Give your loved one time to think about their choices, as it might not be something they’re used to considering. Other family members, friends, carers and medical professionals could also be involved in the conversation.
The first step is to think about who you would like to speak for you, on your behalf. Your substitute decision-maker could be:
- your partner
- your child
- your sibling
- a religious adviser
- a legal representative.
Formal titles for this role vary by state or territory:
- Medical Enduring Power of Attorney or Medical Treatment Decision-Maker (Victoria)
- Enduring Guardian (New South Wales, Tasmania, Western Australia)
- Enduring Power of Attorney (Queensland, ACT)
- Substitute Decision-maker (South Australia)
- Decision-maker (Northern Territory).
If you’re a belt and braces type of person, you can also name an alternative substitute decision-maker, who can step in if your nominated sub is unable to make decisions on your behalf.
Your Advance Care Directive
The next step is to complete an Advance Care Directive. You’ll find the forms and fact sheets for completing your own Advance Care Directive on Advance Care Planning Australia’s website: www.advancecareplanning.org.au.
In aged-care homes, advance care planning discussions between residents, family members or decision-makers, senior nurses or senior staff should take place at admission, once a year, and after a resident’s hospitalisation or a major change in their health.
Make sure your doctor, substitute decision-maker and aged-care home each have a copy of your directive. If you’re technically savvy, you can also store a copy of it online on your ‘My Health Record’ at myhealthrecord.gov.au.
It’s worth reviewing your Advance Care Directive once a year, or if there’s been a change in your personal circumstances.
Your Advance Care Directive can cover practical decisions, including whether to:
- call an ambulance
- transfer to hospital or palliative care
- undergo surgery
- start or stop resuscitation or life-sustaining interventions, such as CPR, artificial ventilation tube feeding, dialysis or palliative care.
It can also look at other choices, such as:
- pain management and treatment preferences, consent or refusal
- provision of spiritual comfort and preparation for death
- your preferred place of care (and how this may affect the treatment options available)
- your choice of person or people you would like to have with you when you die
- cultural items, music or photos you would like to be surrounded by
- wishes regarding a funeral, or organ or tissue donation.
Remember, this is an ongoing conversation. Your wishes might change over time, so it’s important to review your preferences in an ongoing discussion.
It’s worth noting that during times of emergency, such as the 2020 COVID-19 pandemic, advance planning is even more important due to the increased risk of coronavirus infection to older people, and the suddenness of illness. It’s a good idea to review your Advance Care Directive at such times, as social-distancing regulations could impact possible healthcare scenarios, such as avoiding hospitals, and the clinical management of affected residents in palliative care.