Key legislation and terminology
The Northern Territory’s laws relating to withholding and withdrawing life-sustaining treatment and guardianship are contained in two statutes: the Advance Personal Planning Act 2013 (NT) (APP Act) and the Guardianship of Adults Act (NT) (Guardianship Act).
The Guardianship Act provides the following definitions:
- Health care is health care of any kind, including anything that is part of a health service, as well as the removal of tissue from a person’s body.
- Health care action means commencing, continuing, withholding or withdrawing health care for the person.
- A consent decision is a decision to give or refuse consent to the health care action.
- An interested person for a person with impaired capacity is a relative, guardian, the Public Guardian, the Public Trustee, an agent for the person, a carer and any other person who has a genuine and sufficient interest in protecting the person’s best interests.
- An agent for a person means a guardian, an Advance Personal Plan decision-maker, any other person who has authority to make decisions for the person about personal or financial matters, and, if the person is the donor of an enduring power of attorney – the donee of the power.
Substitute decision-making in the Northern Territory 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. A person will have decision-making capacity if he or she can:
- understand and retain information about the matter;
- weigh the information in order to make a decision; and
- communicate that decision in some way.
If a person does not meet these criteria they will have impaired decision-making capacity. A person’s capacity may be impaired even if:
- the impairment is episodic and from time to time their decision-making capacity is not impaired;
- his or her capacity for some personal or financial matters is not impaired; or
- the extent of impairment varies from time to time or depending on the circumstances.
Where a person has impaired decision-making capacity, a substitute decision-maker will need to make the health care decision. This situation may arise when a person nears the end of their life. The substitute decision-maker’s decision has the effect of being as though the person who lacks capacity had made the decision.
A person does not have impaired decision-making capacity just because he or she:
- has a disability, illness or other medical condition;
- engages/engaged in unconventional behaviour or other forms of personal expression, particular cultural or religious practices, or illegal or immoral conduct;
- chooses a living environment or lifestyle or makes decisions with which other people do not agree;
- does not speak English to a particular standard, or at all; does not have a particular level of literacy or education; or does or does not express a particular religious, political or moral opinion;
- is of a particular sexual orientation or identity or expresses particular sexual preferences; or
- takes/has taken, or is/has been dependent on alcohol or drugs (but the effect of alcohol or drugs may be considered in determining whether the person has impaired decision-making capacity).
Who can be a substitute decision-maker for health care decisions at the end of life?
If a person who has lost capacity has an Advance Personal Plan making an advance consent decision about their health care or medical treatment, that direction must be followed. The person may also have appointed a substitute decision-maker in an Advance Personal Plan (known as an Advance Personal Plan decision-maker) who, depending on the matters for which they are appointed, may be able to make a decision for the person.
If there is no Advance Personal Plan decision-maker, or a person has a plan but it does not contain an advance consent decision, or if the person does not have a plan at all, a guardian can appointed by the NTCAT (provided the person with impaired capacity is in need of a guardian). The Tribunal may appoint any of the following as guardian:
- Anyone over 18, so long as they consent to the appointment and the Tribunal believes they are a suitable person to be a guardian.
- The Public Guardian.
- The Public Trustee.
Unlike other Australian jurisdictions, the Northern Territory does not recognise ‘default decision-makers’ who can make health care or medical decisions where no one has been formally appointed.
In some cases the NTCAT will also have power to act as a decision-maker in relation to consent decisions, including the power to consent to or refuse consent to treatment.
Substitute decision-making by the Northern Territory’s guardianship bodies
What is the role of the Public Guardian in relation to decision-making at the end of life?
The Public Guardian is an independent office created under the Guardianship Act and has a number of functions relating to substitute decision-making at the end of life. The Public Guardian can:
- be appointed as a guardian, or act as a guardian where a person’s appointed guardian is unable to act due to illness, absence or another cause; and
- make decisions about health care actions, including withholding or withdrawing life-sustaining treatment.
The Public Guardian must act in accordance with the guardianship principles, but must follow any directions from NTCAT in relation to the exercise of its powers.
What is the role of the Northern Territory Civil and Administrative Tribunal (NTCAT) in relation to decision-making at the end of life?
The NTCAT must act in accordance with the guardianship principles. It has the power to:
- appoint guardians and make guardianship orders;
- review, vary, amend or revoke guardianship orders; and
- make orders about how a guardian must exercise their authority, and in what circumstances.
In some limited cases the NTCAT will also be able to make a consent decision about health care action (including withholding or withdrawing life-sustaining treatment) for a person with impaired capacity. This will only occur where:
- The person with impaired capacity has not made an advance consent decision about the health care action.
- The NTCAT ordered the person’s advance consent decision in an Advance Personal Plan be disregarded.
- There is no one else available and willing to make the decision.
If the NTCAT makes a consent decision ordering a course of action (e.g medical treatment) be provided over a period of time, a later consent decision to withhold or withdraw the health care can only be made by the NTCAT, or a decision-maker or the Public Guardian.
The NTCAT is also able to decide applications for consent to health care actions, and applications by a health professional for urgent health care action. Where the consent decision is urgently required, the NTCAT must make a decision about how to proceed with the application within 24 hours.
Where the matter relates to an Advance Personal Plan, the NTCAT must act in accordance with the decision-making principles under the APP Act.
Health care decision-making by a substitute decision-maker
What health care decisions can a substitute decision-maker make?
The types of health care decisions that a guardian can make will depend on their appointment by NTCAT. The Tribunal must specify in a guardianship order whether the guardian has powers for decision-making about personal or financial matters, or both personal and financial matters. Personal matters include decisions about health care. The guardian is able to do anything on behalf of the person that the person could lawfully have done if they had legal capacity, subject to the terms of the guardianship order and the Guardianship Act.
If the order gives authority to a guardian in relation to health care action, the guardian can make consent decisions (decisions to give or refuse consent) about those health care actions (including commencing, continuing, withholding or withdrawing health care, including life-sustaining treatment) unless:
- the person has made an advance consent decision (under the APP Act) about the health care action; or
- the NTCAT has ordered a person’s advance consent decision be disregarded and:
- the NTCAT has made an advance consent decision about the health care action; or
- someone else, such as the adult guardian or another decision-maker, make a consent decision.
How do substitute decision-makers make decisions?
When deciding whether or not to consent to health care for a person at the end of life, an Advance Personal Plan decision-maker must act in accordance with decision-making principles in the APP Act.
Guardians must act in accordance with the guardianship principles which require the guardian to act and make decisions in the person’s best interests. This includes considering:
- the person’s current and previously stated views and wishes;
- any views and wishes of an interested person for the adult;
- maintenance of the person’s freedom of decision and action to the greatest extent possible;
- provision to the person of appropriate care, including health care;
maintenance of the person‘s right to be treated with dignity and respect; and
- protection of the person from harm, neglect, abuse and exploitation.
A guardian should also decide in a way that is least restrictive of the person’s freedom of decision and action, and support the person as much as possible to make a decision for themselves.
Where the person has made an advance care statement, the guardian must follow and give effect to the statement even if it is not in the person’s best interests. The only exceptions to this are:
- If the person still has capacity and states he or she doesn’t want to give effect to the statement.
- It is impracticable, unlawful, onerous or unreasonable to make the decision the person would have made.
- There is no reasonable possibility the person would have intended the advance care statement to apply in those circumstances.
Can health professionals withhold or withdraw treatment without the consent of a patient’s substitute decision-maker?
No. In the Northern Territory it will be considered unprofessional conduct if a health professional acts without consent and performs a health care action for a person with impaired capacity. The only time a health professional can act without consent is if there are any other laws in the Northern Territory which allow this to occur i.e. in an emergency situation.
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 a health professional can operate on a person without consent if he or she and at least one other health practitioner believe the patient is in danger of dying or suffering a serious permanent disability, and the operation is needed to prevent either occurring.
However, if the patient has impaired capacity, a health professional cannot perform an operation unless it is not possible to delay the operation until they can determine if an advance consent decision has been made, or a consent decision can be given by a substitute-decision maker, the NTCAT or anyone else.
The health professional cannot perform an operation if they know the person with impaired capacity has made an advance consent decision refusing consent for the operation, or that a substitute decision-maker has refused consent to the operation.
Complaints and dispute resolution
End of life decision-making can be a very challenging and emotional time for the patient, 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, they can contact the Public Guardian about dispute resolution options. A person can also apply to the NTCAT for a review, amendment, variation or revocation of a guardianship order. The NTCAT also has broad powers to make a declaration about any matter relating to the making of a consent decision about health care action for a person with impaired capacity.
The Northern Territory Department of Health can provide further information about complaints processes and conflict resolution relating to guardianship and end-of-life decision-making.