Advance Care Planning & Substitute Decision-Making

Advance care planning lets a patient with decision-making capacity record their values and treatment preferences for a time when they can no longer make or communicate decisions. The legal instruments below are the NSW ones; other states differ.

What it covers

Advance care planning is the process by which a person considers their values, hopes and goals in relation to their health, and informs their healthcare professional(s) and people close to them about their preferences for health care in the event they are unable to make or communicate decisions. It becomes more important as the likelihood of dying increases — older patients and those with a life-limiting illness — but is relevant to any adult with capacity.

A plan can cover treatment preferences (resuscitation, ventilation, IV antibiotics, transfer to hospital), place of care and death, organ/tissue donation, and the name of a substitute decision-maker. An advance care plan should be prepared early, reviewed regularly and updated as goals of care shift or disease progresses.

Advance care directives in NSW

An Advance Care Directive is a way to say what healthcare treatments a person would like to have or refuse if they have a life-threatening illness or injury. It is valid if the person had capacity when they wrote it, it has clear and specific details about treatments they would accept or refuse, it reflects their own preferences rather than someone else’s, and it applies to the situation they are actually in.

In NSW, an Advance Care Directive can be spoken or written. Signatures and witnesses are not required for an Advance Care Directive to be valid and enforceable, though a signature from the patient, a witness and a health professional helps others recognise it as genuine. The NSW Supreme Court has said that valid Advance Care Directives must be followed, and health professionals and Persons Responsible have no authority to override one. Pain relief is never withheld because of a directive requesting a natural death: if a patient’s Advance Care Directive states they want to die a natural death, they will still be given pain relief if needed.

A directive only applies once the doctor has assessed both its validity and whether it applies to the current clinical situation — a directive written with end-of-life scenarios in mind may not apply to a reversible acute illness such as a fall with concussion.

The Person Responsible

The Guardianship Act NSW (1987) outlines who can make healthcare decisions when a patient no longer can. To find this Person Responsible, health professionals look for someone using the following list, in order of priority: the patient’s Enduring Guardian or a guardian appointed by the NSW Guardianship Tribunal; the patient’s spouse or de facto partner with an ongoing relationship; the patient’s unpaid carer providing ongoing regular care; or a close friend or relative with an ongoing relationship.

An Enduring Guardian is a person legally appointed to make medical or dental decisions for the patient if they lose capacity. This is distinct from an Enduring Power of Attorney, whose role is to manage the patient’s business, property and financial matters — an attorney has no authority to consent to or refuse medical treatment. Appointing an Enduring Guardian is the only way a patient can choose who fills the Person Responsible role, rather than leaving it to the default hierarchy above.

The Person Responsible must refer to any existing Advance Care Directive before making a decision — they cannot override a valid directive, only fill gaps it does not cover.

Where there is no directive, consult the Person Responsible and consider the patient’s known values and goals.

Resuscitation plans

A Resuscitation Plan is the medically authorised, clinician-completed order (distinct from the patient’s own Advance Care Directive) that documents whether to use or withhold resuscitation measures and other end-of-life treatment. NSW Health Resuscitation Plans are not valid for community patients under the medical care of a doctor who is not a NSW Health staff member; General Practitioners with admitting rights are considered NSW Health staff for this purpose.

For community patients outside hospital, a documented GP management plan or letter — not the hospital-form Resuscitation Plan — is what paramedics and after-hours services rely on.

The GP’s role

General practitioners are well-placed to have conversations about advance care planning; through trusted relationships with their patients, they can introduce the subject in the non-acute phase of a patient’s illness, when it is easier to talk about these matters. Many patients expect their healthcare professional to raise the subject of advance care planning.

Useful triggers to raise it, rather than waiting for a crisis:

• A 75-years-and-older health assessment or other routine review in an older patient.
• A new life-limiting diagnosis or a significant change in a patient’s clinical status.
• Recent hospitalisation or admission to a residential aged-care facility.
• A new diagnosis of dementia or other progressive cognitive decline, while capacity is still intact.

A typical conversation: check whether a plan already exists, assess willingness to discuss it, explain that a written plan only takes effect if capacity is lost, explore the patient’s understanding of their condition and prognosis, discuss preferences for specific interventions (resuscitation, ventilation, feeding, hospital transfer, place of death), and help them identify a substitute decision-maker. Document the conversation even where the patient does not complete a formal directive that day, and offer a follow-up appointment rather than trying to finish in one sitting.

Storage and distribution

A completed directive is only useful if it can be found when needed. Encourage the patient to keep the original somewhere prominent, and to give copies to their Person Responsible/Enduring Guardian, family, GP, and any hospital or facility involved in their care. Patients can upload their Advance Care Directive to My Health Record, which GPs and other treating clinicians can then view. For a patient likely to deteriorate at home or in residential aged care, a written plan at the point of care (not just filed in the GP record) is what determines whether paramedics or an after-hours doctor actually see it in an emergency.

Safety-netting

It is good practice to re-read and confirm the plan once a year, and after any hospitalisation, new diagnosis, or major change in the patient’s condition — an out-of-date plan that no longer reflects the patient’s preferences is as much a risk as having none.

Confirm the patient has told their Enduring Guardian and family what they decided, not just written it down.

For a patient at high risk of an out-of-hours deterioration, actively get a copy of the directive or management plan to the residential facility, the local hospital and, where relevant, the ambulance service in advance.