Advance care directives (ACDs) are legally binding documents that outline a person’s healthcare preferences when they lose the capacity to communicate. According to a 2025 study by Advance Care Planning Australia, only 6% of Australians have formally completed an ACD, despite 33% having undertaken some form of advance planning.
The Gap Between Planning and Legal Documentation
Many Australians discuss their end-of-life wishes, but few formalize them. This gap creates significant clinical and emotional risks. When a patient becomes unconscious or cognitively impaired, medical teams often face conflicting demands from family members.
Associate Prof Davinia Seah, head of palliative medicine at St Vincent’s hospital in Sydney, reports frequent conflicts where one relative requests comfort care via morphine while another demands aggressive ICU intervention and intubation. Without a document, Seah says it is difficult to determine which family member’s voice represents the patient’s actual wishes.
Did you know? In Queensland, these documents are specifically called Advance Health Directives (AHDs). They can include specific instructions to exclude certain people from healthcare discussions.
Preventing ‘Unmerciful’ End-of-Life Passages
The absence of a directive can lead to “interventionist treatments” that patients would have otherwise refused. This often manifests as prolonged hospital stays and invasive procedures during the dying process.
John Groves, a New South Wales retiree with cardiomyopathy, decided to complete an ACD after multiple near-death experiences. After spending four months in the hospital with a mechanical heart pump and a liver infection, Groves documented his preference to be kept pain-free and cared for at home. He specifically noted that if his heart pump fails, he wishes to be let go.
For those without such documents, the results can be stark. A doctor, speaking on the condition of anonymity, noted that she has witnessed older patients “maimed” by well-meaning CPR and life-sustaining measures because their wishes were not formally set out.
The Logistical Challenge of Accessing Directives
Having a document is only half the battle; clinicians must be able to find it during a crisis. Associate Prof Seah highlighted a recent case of an 87-year-old patient who had an ACD, but the document was stored with her solicitors. Seah noted the extreme difficulty doctors face when trying to retrieve such paperwork in an emergency.
What Typically Goes Into an ACD?
- Life-Sustaining Treatment: Preferences on CPR, assisted ventilation, and artificial nutrition.
- Palliative Care: Instructions to prioritize comfort and pain management over longevity.
- Values-Based Living: Specific conditions that make life worth living (e.g., the ability to eat or engage in hobbies).
- Post-Death Wishes: Organ donation preferences and cremation instructions.
- Appointed Guardians: Naming a legal “enduring guardian” to make decisions.
Pro Tip: Don’t leave your directive in a safe or with a lawyer exclusively. Ensure a digital copy is accessible to your primary care physician and your next of kin.
The Emotional Burden on Families
When a patient’s wishes are “black and white,” as John Groves describes his own, the burden on the family shifts from decision-making to support. Conversely, without a directive, families often experience “circular, unpleasant” arguments with medical staff.
For those without children or spouses, the need for these documents is even more critical. Without a legally appointed representative or a written directive, doctors may have to rely on neighbors or acquaintances, leaving clinicians to guess if those individuals are acting in the patient’s best interests.
Frequently Asked Questions
What is the difference between an ACD and a Will?
A Will handles the distribution of assets after death. An Advance Care Directive (ACD) governs medical treatment and healthcare decisions while the person is still alive but unable to communicate.
Can I change my mind after signing an ACD?
Yes. As long as the person has the mental capacity to do so, they can update or revoke their directive at any time.
What happens if I have no ACD and no family?
Doctors must act in the patient’s best interests, but they may struggle to identify those interests without a legal guardian or written instructions, which can lead to unwanted aggressive treatments.
Have you discussed your end-of-life preferences with your family or doctor? Share your thoughts in the comments or subscribe to our newsletter for more guides on healthcare planning.