Key legislation and terminology
The Australian Capital Territory’s (ACT) laws relating to withholding and withdrawing life-sustaining treatment and guardianship are contained in the following legislation:
- Guardianship and Management of Property Act 1991 (ACT) (Guardianship Act)
- Medical Treatment (Health Directions) Act 2006 (ACT) (Medical Treatment Act)
- Powers of Attorney Act 2006 (ACT) (the Powers of Attorney Act).
Health care includes withholding or withdrawing life-sustaining treatment if starting or continuing the treatment would be inconsistent with good medical practice.
Health care matter includes matters relating to a person’s health care, such as consenting to medical treatment, organ and tissue donation (other than donation of non-regenerative tissue), withholding or withdrawing medical treatment, and legal matters relating to the person’s health care.
A Health Direction is a direction given by a person with decision-making capacity to refuse or require the withdrawal of medical treatment generally or a particular kind of medical treatment.
Substitute decision-making in the ACT at the end of life
When will a substitute decision-maker be needed to make health care decisions for another person at the end of life?
A person is presumed to have capacity to make health care decisions. If a person no longer has capacity, and they did not make a Health Direction (i.e. a statutory Advance Care Directive), a substitute decision-maker will need to make the health care decision on the person’s behalf. This situation may arise when a person nears the end of their life.
The substitute decision-maker’s decision has the same legal effect as if the person with impaired decision-making capacity or ability had made the decision him or herself.
Different definitions of impaired decision-making capacity apply depending on the type of substitute decision-maker:
- An attorney appointed under an Enduring Power of Attorney may have power to make health decisions for a person with impaired decision-making capacity. This means the person is unable to make decisions, or does not understand the nature or effect of those decisions.
- A guardian will be able to make decisions for another if the person has impaired decision-making ability due to a physical, mental, psychological or intellectual condition or state.
- A health attorney (a default decision-maker) may consent to treatment for a ‘protected person’, that is, a person who has impaired decision-making ability for giving consent to medical treatment, and who does not have an attorney or guardian with authority to provide that consent.
A person does not have impaired decision-making capacity or ability merely because of factors including that the person is eccentric; holds a particular political or religious view; is of a particular sexual orientation; engages or has engaged in illegal or immoral conduct; or takes or has taken drugs (including alcohol).
Find out more about the Australian Capital Territory's laws on capacity at Capacity and consent to medical treatment.
Who can be a substitute decision-maker?
In the ACT there is no priority order of substitute decision-makers. The decision may be made in one of the following ways:
- if the person has a Health Direction, in accordance with that Direction.
- by an Attorney appointed by the person under an Enduring Power of Attorney (EPA) for a health care matter, unless the person also has a Health Direction. In that case:
- if the Health Direction and the EPA are consistent, the Attorney must comply with the Health Direction when making a decision.
- If the Health Direction and EPA are inconsistent, the Attorney must comply with whichever document was made later.
- by a guardian or guardians appointed by the ACT Civil and Administrative Tribunal (ACAT) (the Public Trustee and Guardian may be appointed guardian if there is no one else suitable).
- (if there is no Attorney or guardian) by a default decision-maker, known as a health attorney. This will be the first person aged 18 years or over from the following list (in priority order):
- the person’s domestic partner who is in a close and continuing relationship with the person (a domestic partner is someone who lives with the person in a domestic partnership, and includes a spouse, civil union partner or civil partner. A domestic partnership is the relationship between two people, whether they are of a different or the same sex, living together as a couple on a genuine domestic basis), or
- an unpaid carer for the person, or
- a close relative or friend of the person.
A clinician may seek consent from the health attorney they believe is best able to represent the views of the person who does not have capacity. To determine this, the clinician must consider the list of possible health attorneys, in priority order, and any relevant circumstances, including whether they are a suitable person to provide consent, and how readily available the health attorney is.
Where there is an EPA and a Health Direction, the ACAT has the power to declare whether or not a Health Direction is consistent or inconsistent with an EPA. For more information about EPAs and health attorneys visit the Public Trustee and Guardian.
Substitute decision-making by the ACT’s guardianship bodies
What is the role of the ACT Civil and Administrative Tribunal (ACAT) in decision-making at the end of life?
The ACAT is an independent Tribunal that has the power to appoint a guardian to make decisions about health care for people without capacity. However, unlike tribunals in other jurisdictions, ACAT does not appear to have either the power to consent to health care generally, or to refuse consent or withdraw consent to life-sustaining treatment. Despite this, it has a supervisory role in relation to decisions made on behalf of a person with impaired capacity.
For example, if ACAT believes the substitute decision-maker is not making appropriate health care decisions, it may replace that decision-maker and appoint another. The ACAT also has power to provide advice or recommendations to substitute decision-makers about the exercise of their powers.
More information about ACAT’s role is available from ACAT.
What is the role of the Public Trustee and Guardian in decision-making at the end of life?
The Public Trustee and Guardian is an independent office created under the Public Trustee and Guardian Act 1985 (ACT), and has a number of functions relating to substitute decision-making at the end of life. The Public Trustee and Guardian can:
- Be appointed as a guardian (by the ACAT) if no suitable person has consented to being appointed.
- Where a health attorney refuses to consent to treatment for a person, consider whether the refusal is reasonable, or apply to ACAT to be appointed as guardian.
- As guardian, consent to medical treatment (which would appear to include the power to refuse consent or withdraw consent to treatment, provided ACAT grants the Public Trustee and Guardian that power).
- Act as mediator to resolve disputes between available health attorneys about consent to treatment.
For more information visit the Public Trustee and Guardian.
Health care decision-making by a substitute decision-maker
What health care decisions can a substitute decision-maker make?
A substitute decision-maker can make most decisions about medical treatment for a person at the end of life. However substitute decision-makers have different powers, and the health care decisions they can make depends on the type of substitute decision-maker.
If an attorney under an Enduring Power of Attorney is appointed to make directions about health care, they are able to make decisions about withholding of withdrawing life-sustaining treatment, but only in situations where starting the treatment, or continuing it, would be contrary to good medical practice. An attorney cannot ask for treatment to be withheld or withdrawn unless:
- they have consulted a doctor about the person’s illness, alternative forms of treatment available and any consequences to the person of remaining untreated; and
- the attorney believes that the person, if they still had capacity and could give serious consideration to their health and wellbeing, would ask for the treatment to be withheld or withdrawn.
If the person has a guardian, the decisions the guardian can make will depend on the powers granted to the guardian by ACAT. If there are no limitations, the guardian will be able to do anything the person could have done if they had capacity, including making most medical treatment decisions.
However, whether or not a guardian can make decisions about withholding and withdrawing treatment is somewhat uncertain. The Tribunal can grant a guardian power to make decisions about consent to treatment (other than prescribed medical procedures e.g. sterilisation, non-regenerative tissue transplantation). However, the power to withhold or withdraw treatment is not included as one of the general powers of a guardian. Therefore, unless ACAT expressly grants this power to a guardian when appointing them, it seems a guardian can only consent to treatment, and not refuse or withdraw life-sustaining treatment.
A health attorney can consent to medical treatment for the person, but does not have specific power to refuse treatment or withdraw consent to treatment.
Before the health attorney can consent, a health professional must give the health attorney information about the person’s condition, alternative treatments available, the nature and effect of the proposed treatment, significant risks involved, the effect of not providing the treatment, and any other relevant matters including the decision-making principles (set out below). A health professional only needs consent from one appropriate health attorney, and is not obliged to consult any other health attorneys. A health professional must formally appoint the health attorney (prior to the giving of consent) using the Health Attorney for Consent to Medical Treatment form.
If the health attorney does not provide consent to the treatment, and that refusal is inconsistent with the person’s Health Direction, the health professional must refer the matter to the Public Trustee and Guardian. If it considers the refusal to be reasonable, no further action will be taken, and that refusal will operate. If this is not the case, the Public Trustee and Guardian must apply to the ACAT to be appointed to act as guardian.
More information about substitute decision-making is available from the Public Trustee and Guardian.
How do substitute decision-makers make decisions?
In the ACT all substitute decision-makers must follow the decision-making principles when making a decision to consent to treatment for a person with impaired capacity. For end of life decision-making, these principles include:
- giving effect to the person’s wishes if they are known, unless it would significantly adversely affect their interests;
- if giving effect to the person’s wishes would significantly adversely affect their interests, then the decision-maker must give effect to their wishes as far as possible (without significantly adversely affecting their interests);
- if their wishes cannot be given effect to at all, making a decision that promotes the person’s interests.
The substitute decision-maker should also consult the person’s carer or carers, unless doing so would be adverse to the person with impaired capacity’s interests. A person’s interests include protection from harm, or physical or mental deterioration.
If the person already has a Health Direction, and a health attorney or guardian is asked to give consent to treatment, they must exercise their power consistently with the Health Direction, unless it is not reasonable for the health attorney to do so (e.g. if the health attorney does not have time to look at the Health Direction and an urgent decision is required; or a health attorney is unaware, after making reasonable enquiries, that a Health Direction exists).
Health professionals and health attorneys considering whether to consent to medical treatment must also apply the decision-making principles.
The Powers of Attorney Act also requires an attorney making a decision about health care matters to comply with the general principles set out in the Act, including:
- respecting the person’s human worth and dignity;
- taking into account the person’s right to take part in decision-making where possible;
- determining what the person’s wishes and needs would have been; and
- making decisions about health care matters in a way that is:
- least restrictive of the individual’s rights and freedom of action;
- necessary and appropriate to maintain or promote the person’s health and wellbeing; and
- in the person’s best interests.
The person’s wishes about their health care, and any information provided by the person’s health professionals must also be taken into account when the attorney makes decisions on behalf of the person.
Can health professionals withhold or withdraw treatment without the consent of a person’s substitute decision-maker?
A health professional is under no duty to treat a person (even if requested by a substitute decision-maker) if the treatment would be of no benefit, not in the person’s best interests, or futile. In this situation there is no obligation for a health professional to obtain consent to the withholding or withdrawing of such treatment (though, as a matter of practice they may wish to do so).
Find out more about the law relating to futile or non-beneficial treatment at Adult Treatment Decisions.
Emergency medical treatment
When can emergency treatment be provided, and is consent required?
Where a person without capacity requires emergency treatment, a substitute decision-maker’s consent is not required. Instead, health professionals can rely on the common law and provide urgent medical treatment without consent if it is necessary and reasonable. However, it is good clinical practice to obtain a substitute decision-maker’s consent if possible, and time permits.
Find out more about the common law on consent to emergency treatment at Capacity and consent to treatment.
Complaints and dispute resolution
End of life decision-making can be a very challenging and emotional time for the person, their family and friends, substitute decision-makers and health professionals. Sometimes disputes arise about medical decision-making for the person.
If anyone (including a health professional) is concerned about a substitute decision-maker or disagrees with the decisions being made, or a decision cannot be reached about the person’s care and treatment, the person can contact the Public Trustee and Guardian for information and advice. A person can also apply to ACAT or the Supreme Court for a review or revocation of the substitute decision-maker’s appointment.
In some circumstances a health professional must refer a matter to the Public Trustee and Guardian for a decision about medical treatment. This occurs where:
- A health attorney refuses to consent to treatment, and a health professional believes the refusal is inconsistent with a Health Direction.
- There is a dispute about the treatment between the health attorney and other people who could potentially be health attorneys, and the health professional is not aware of any Health Direction about whether or not consent should be given.
The Public Trustee and Guardian may agree with a refusal to provide consent, mediate the dispute, or apply to ACAT to be appointed as a guardian.
If there is conflict or disagreement between multiple attorneys or health attorneys, the Public Trustee and Guardian can also try to mediate the dispute.
For more information about complaints and dispute resolution visit the Public Trustee and Guardian.