Advance Care Planning in NSW: Directives, Guardians and Plans

Advance care planning in NSW: the directive most people cannot make, and the plan they can

NSW Health’s own guidance on advance care directives contains a sentence that decides the whole shape of this subject for people with disability:

“An Advance Care Directive can only be made by you as an adult with decision making capacity.”

Somebody else cannot make one for you. Not a parent, not a guardian, not a spouse. If a person has never had the capacity to make one, or has lost it, that door is closed — and it does not reopen.

Which means that for a very large proportion of the people this sector supports, the instrument that everybody talks about is unavailable. The reasonable conclusion people draw is that advance care planning is therefore not possible for them, and that conclusion is wrong.

There is a second instrument, it is available to people without capacity, and almost nobody uses it. NSW Health describes it plainly: where somebody cannot make a directive, “you or people close to you can still plan your care through an Advance Care Plan, which documents values and preferences.” Unlike a directive, it does not have to be followed — but it guides the decisions that will be made.

That distinction is the point of this guide. A directive binds and requires capacity. A plan guides and does not. For most people with significant intellectual disability, the plan is the available tool, and a well-made one changes what happens to somebody at the end of their life.

We are an NDIS provider based in western Sydney, working across the state. We are not lawyers and nothing here is legal advice — this describes New South Wales arrangements in general terms, the law is state-specific and changes, and a real decision needs advice from the NSW Public Guardian, NCAT or a solicitor.

The four things, and what each one does

People use these terms interchangeably and they are not interchangeable.

Advance care directive

A document — or, in New South Wales, potentially a spoken statement — setting out which treatments a person would accept or refuse if they became seriously ill or injured and could not decide for themselves.

Who can make one: only an adult with decision-making capacity, for themselves. Others may help write down the person’s preferences, but they cannot make the directive.

What makes it valid, per NSW Health: the person had capacity when they made it; it gives clear and specific treatment choices; it reflects their own preferences; and it applies to the situation that has arisen. Signatures and witnesses are not strictly required in New South Wales but are strongly recommended, because they help clinicians confirm validity when it matters.

The force it carries is considerable. The NSW Supreme Court has held that valid advance care directives must be followed, as part of a person’s right to make decisions about their own health. A doctor looks at a directive only once the person can no longer decide or communicate, assesses whether it is valid and whether it applies — and if it is, neither health professionals nor family can override it.

That last clause is worth knowing, because families sometimes expect to be able to change their mind on somebody’s behalf, and they cannot.

The practical weakness is in the words “clear and specific”. A directive saying “I would not want to be kept alive by machines” is a sentiment, not an instruction, and clinicians will struggle to apply it. A directive that names the circumstance and the treatment — hospital transfer, CPR, antibiotics, artificial nutrition and hydration, intensive care, ventilation — is usable.

Enduring guardian

A person appointed, by an adult with capacity, to make health and lifestyle decisions on their behalf if they lose capacity. In New South Wales this is done under the Guardianship Act 1987, and one or two people may be appointed.

The crucial feature for progressive conditions: this must be done while the person still has capacity. For somebody with motor neurone disease, Huntington’s disease, younger onset dementia or progressive multiple sclerosis, the window is now and it closes.

An enduring guardian must consider the person’s advance care directive and their previously expressed preferences. They are not free to substitute their own view.

Person responsible

The default, used when nobody has been appointed. Defined in the Guardianship Act 1987, in priority order:

1. An enduring guardian or Tribunal-appointed guardian with the relevant function
2. A spouse or de facto partner
3. An unpaid regular carer
4. A close friend or relative with an ongoing relationship

Note what is absent: a paid carer. A support worker, house manager or provider is not the person responsible and cannot consent to medical treatment. We state this plainly because providers are sometimes asked to, and the answer is always no.

And note the consequence of the hierarchy for people who have outlived their families. A person in their fifties with intellectual disability whose parents have died, who has no spouse and no unpaid carer, may have no person responsible at all — in which case decisions may require an application to NSW Civil and Administrative Tribunal’s Guardianship Division. That is a problem worth identifying before a crisis, because an urgent tribunal application during somebody’s final days is a dreadful way to spend their last week.

If you support somebody with no identifiable person responsible, raise it now.

Advance care plan

The instrument this sector should be using and largely is not.

A document recording the person’s values and preferences, able to be made by the person or by people close to them, and not requiring capacity. It does not have to be followed. It guides the decisions that the person responsible and the treating team will make.

The reason it matters so much is that those decisions are going to be made anyway. Somebody will decide whether this person goes to hospital, whether they receive CPR, whether antibiotics are given for the fourth pneumonia. The only question is whether that decision is informed by a careful record of who the person is and what they have shown over decades, or by a doctor meeting them for the first time in an emergency department at 11pm.

What a good advance care plan contains for somebody with lifelong disability

This is the practical heart of the guide, and it is the document we would most like every provider to produce.

It is not a medical document. It is a portrait with practical consequences.

Who this person is. What they love. What they find funny. What they have spent their life doing. The things that matter to them. Written by people who know them.

How they communicate, in detail. How they say yes. How they say no. How they indicate pain, fear, discomfort, pleasure. What their face does.

Their baseline. What they are like when they are well — covered in the recognising-dying guide here, and essential to any later judgement about change.

What frightens them. Hospitals. Strangers. Being touched without warning. Noise. Bright lights. Being alone. Being moved quickly. This list does more to shape good end-of-life care than anything else in the document.

What comforts them. A particular person. A particular blanket. Music. Being read to. Quiet. Having their hair stroked. A specific chair.

What they have said, over the years, about illness, hospital, dying, people they have lost. Even fragments. Even once.

How they have responded to medical care before. Previous admissions, what happened, how they coped, what made it worse, what helped. If a previous hospital stay was traumatic, that is directly relevant to whether another one is in their interests.

Who should be with them. By name.

Religious, cultural or spiritual matters — practices, rituals, a particular person to be called, requirements around the body after death.

What has been considered about treatment, and by whom. Not a decision the plan can make, but a record of the thinking: what the GP and family have discussed about hospital transfer, CPR, antibiotics, tube feeding.

Who the person responsible is, by name and contact, and whether any guardianship order exists.

The person’s own participation, documented. Even where somebody cannot make a directive, they may be able to express a preference about something — where they want to be, who they want with them, whether they want to go to hospital. Supported decision-making applies to everybody. Record what they indicated, how it was asked, and in what format.

Dated, with a review date, and with the author named.

The clinician-made orders, which are different things

Two documents people confuse with the above, because they also sit in a file and also concern treatment at the end of life.

A resuscitation plan. This is a medical order, completed and signed by a doctor, recording decisions about cardiopulmonary resuscitation and other interventions. NSW Health has forms for this, including separate paediatric arrangements. It is written by a clinician, not by the person, though it should be informed by the person’s directive, their plan and discussion with them and their family.

An advance care plan or treatment limitation form completed by a treating team in hospital or in a residential setting, which similarly records clinical decisions.

Why the distinction matters practically: a family may have an advance care directive and assume it will prevent resuscitation. In an emergency, what ambulance and emergency department staff act on most readily is a clinician-signed order. Having both — the person’s own directive or plan, and a current clinician-completed resuscitation plan — is considerably more robust than having either alone.

For anybody approaching the end of life at home or in supported accommodation, ask the GP or palliative care service directly: is there a current resuscitation plan, and is there an ambulance or paramedic palliative care plan? The second one is what stops a dying person being transported against their wishes.

The failure mode: the document nobody can find

A perfect advance care directive in a drawer at home, while the person is in an emergency department at midnight, achieves nothing.

Where it needs to be:

• With the GP, on the practice record
• Uploaded to My Health Record, where the person has one
• A copy in the house file, in a known place, findable by a worker who started last week
• With the person responsible, who should know it exists
• A copy that travels — in the bag that goes with them to hospital, with the hospital passport
• Known to the palliative care service, if one is involved
• Known to every worker, including agency staff, at least to the extent of knowing it exists and where it is

And it needs reviewing. After any significant change in health, after an admission, when the person’s circumstances change, and otherwise periodically. A directive written in 2014 referring to a situation that no longer resembles the person’s circumstances may be found not to apply.

Timing, and the window that closes

For progressive conditions this is the whole game.

Somebody with motor neurone disease, Huntington’s disease, younger onset dementia or advanced multiple sclerosis will lose the capacity to make a directive or appoint an enduring guardian. The time to do both is as early as possible after diagnosis, while the person can participate fully and while the document will carry their actual voice rather than a reconstruction of it.

The MND, Huntington’s and dementia libraries on this site each cover planning for those conditions specifically. The point for this guide is that the sequence matters: appoint the enduring guardian first, because it takes five minutes and it is the thing that most reliably protects the person later, and then work on the directive, which takes longer and benefits from several conversations.

For somebody with lifelong disability, there is no window to miss — the advance care plan can be made at any time and should be.

The ethical risk that has to be named

Advance care planning for people with disability carries a specific danger, and it would be dishonest to write this guide without naming it.

People with disability have historically had treatment withheld or not offered on the basis of assumptions about the value of their lives. The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability documented the consequences of exactly that kind of judgement in healthcare.

So an advance care planning process must be a process for recording the person’s wishes and interests. It must not become a mechanism for deciding that somebody’s life is less worth sustaining because they have a disability.

The signals that it is going wrong:

• The reasoning refers to the person’s quality of life as assessed by other people, rather than to their wishes, their comfort, or the likely benefit and burden of a specific treatment
• A treatment limitation is proposed because of the disability rather than because of the illness trajectory
• The person has not been involved at all, despite being able to express preferences about some things
• Nobody can point to anything the person themselves has ever said or indicated
• The conversation is being driven by a service’s convenience rather than by the person’s situation
• A limitation is being applied to somebody who is not actually approaching the end of their life

The test to apply: would this decision be made the same way for a person without a disability who had the same illness, the same trajectory and the same prognosis? If the answer is no, the disability is doing work it should not be doing.

Conversely — and this is the other half of the honesty — not planning is also a failure, and it is the more common one. A person who ends up receiving CPR in an ambulance because nobody ever had the conversation has not been protected by the absence of a plan. They have been failed by it.

How to have the conversation

With the person, wherever possible. Accessible information, Easy Read, pictures, over several short conversations rather than one. Palliative Care Australia’s Dying to Talk resources are designed to start these conversations, and it is worth asking about accessible versions. Follow the person’s lead on how much they want to discuss.

With the family, acknowledging that for a parent who has cared for forty years this conversation is about the thing they have feared since the day their child was born. It takes time and repetition.

With the GP, formally. Medicare funds longer consultations — item 36 for 20 to 40 minutes and item 44 beyond 40 — and for people with intellectual disability the annual health assessment under item 707 provides over an hour, which is a natural place to begin. A multidisciplinary case conference under items 735, 739 or 743 brings the GP, the specialist, the family and the provider into one conversation.

Not in a crisis. The worst possible time to start is during an admission, and that is when it most often happens.

What a provider should do

• Identify who has no person responsible, and raise it before a crisis
• Produce an advance care plan for anybody who cannot make a directive — the portrait document described above
• Write the baseline down
• Ask whether an enduring guardian can still be appointed, for anybody with a progressive condition
• Find out whether a directive or plan already exists, because frequently one does and nobody has looked
• Make sure it is where it needs to be, including on the health record and in the bag that goes to hospital
• Ask the GP about a resuscitation plan and an ambulance palliative care plan
• Document the person’s own participation, however limited
• Review after every admission
• Never consent to anything. A provider is not the person responsible.