Key legislation and terminology
The Australian Capital Territory’s (ACT) laws relating to withholding and withdrawing life-sustaining treatment and guardianship are located in three statutes: the Guardianship and Management of Property Act 1991 (ACT) (Guardianship Act), the Medical Treatment (Health Directions) Act 2006 (ACT) (Medical Treatment Act) and the 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 donations (other than donations of non-regenerative tissue), withholding or withdrawing medical treatment, and legal matters relating to the person’s health care.
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 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.
Different definitions of impaired decision-making capacity apply depending on whether the substitute decision-maker is an attorney or a guardian:
- An Enduring Power of Attorney gives power to an attorney to make decisions for a person when they have 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 person does not have a physical, mental, psychological or intellectual condition merely because 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).
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.
Who can be a substitute decision-maker for health care decisions at the end of life?
The first person on the following list who is available, willing and able to act can be a substitute decision-maker, and make health care decisions or provide consent to health care for a person with impaired capacity (in order of priority):
1. An attorney appointed under an Enduring Power of Attorney (EPA) for a health care matter. However, if a person with impaired capacity has both a Health Direction and an EPA (for a health care matter) different approaches apply:
- If the Health Direction and any directions in the EPA are consistent with each other, the attorney appointed under the EPA must comply with the Health Direction when making a decision.
- If the Health Direction and any directions in the EPA are inconsistent, the attorney must comply with:
- The EPA, if the Health Direction was made before it; or
- The Health Direction, if it was made after the EPA.
The ACT Civil and Administrative Tribunal (ACAT) has the power to declare whether or not a health direction is consistent or inconsistent with an EPA. For more information about EPAs visit the Public Trustee and Guardian.
2. If there is no attorney under an EPA, directions about health care or medical treatment (including refusing or withdrawal of treatment) given in a Health Direction will be followed. If, after the Health Direction was made, a guardian was appointed, or a health attorney is asked to give consent to treatment, they must act in accordance with the Health Direction, unless it is not reasonable to do so (i.e. a health attorney is asked to make an urgent medical decision and does not have time to look at the Health Direction, or a health attorney is unaware, after making reasonable enquiries, that a Health Direction exists).
3. A guardian or guardians appointed by the ACAT. If there is no person suitable, available or willing to act as a guardian, the Public Trustee and Guardian may be appointed guardian.
4. A default decision-maker, known as a health attorney. This will be the first person 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 same sex, living together as a couple on a genuine domestic basis.
- An unpaid carer for the person.
- A close relative or friend of the person.
If a health professional believes the person lacks capacity and cannot consent to their medical treatment, the health professional may seek consent from the health attorney whom he or she believes is best able to represent the person’s views. To determine this, the health professional must consider the list of possible health attorneys above, in priority order, and any circumstances the health professional believes are relevant, including whether they are a suitable person to provide consent, and how readily available the health attorney is.
For further information about 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 has the power to appoint a guardian, who may make decisions in relation to health care. However, unlike 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 with those powers. The ACAT also has power to provide advice or recommendations to substitute decision-makers about the exercise of their powers.
Further 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 or manager by the ACAT if no one else is available to make a decision about treatment.
- 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 which can be made depend on the type of substitute decision-maker who is appointed:
- 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 his or her own 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 Guardianship Act enables the Tribunal to 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.
Before a health attorney can provide consent he or she must be formally appointed by a health professional using the Health Attorney for Consent to Medical Treatment form. Further information 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.
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).
Who makes decisions about life-sustaining treatment in an emergency situation?
In an emergency situation, a substitute decision-maker’s consent is not required by ACT law. Instead, health professionals can rely on the common law and provide urgent medical treatment without consent if it is necessary and reasonable.
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, and 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 further 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 further information about complaints processes and conflict resolution relating to guardianship and end of life decision-making, contact the Public Trustee and Guardian.
Where a patient attending the Canberra Hospital, their family or carer is concerned the patient's health condition is getting worse while they are in hospital, they may access the CARE (Call and Respond Early) Program for Patient Safety. This system enables patients, families and carers to discuss their concerns with the patient's nurse, midwife or doctor, and to access a review of the patient by a Patient Safety nurse if the concerns are unresolved. Further information about CARE is available from the Canberra Hospital.