Northern Territory

Important terminology

• Advance care statement is a statement in an Advance Personal Plan which sets out the views, wishes and beliefs of the person making it, to help guide decision-makers if the person loses capacity.

• Advance consent decision is a health care decision set out in an Advance Personal Plan.

• An agent for a person means a guardian, an Advance Personal Plan decision-maker, a health care decision-maker with authority under the HCDM Act; and, if the person is the donor of an enduring power of attorney – the donee of the power.

• Health care is any kind of health care, including or provided as part of the following services:
  • services provided by health practitioners;
  • hospital, mental health, pharmaceutical, ambulance, community health, health education, and pathology services;
  • welfare services related to any of the above;
  • services provided by dietitians, massage therapists, naturopaths, social workers, speech pathologists, and audiologist; the removal of tissues from a person’s body; or
  • an assessment conducted by a health care provider to assess current or future health care requirements e.g. an aged care assessment.
• Health care action (under the APP Act) means commencing, continuing, withholding or withdrawing health care for a person.

• Health care decision is a decision whether to commence, continue, withdraw or withhold health care for an person. Under an Advance Personal Plan.

• Health care provider is an individual who provides health care.

• An interested person for a person is a relative, guardian, the Public Guardian, the Public Trustee, an agent for the person, a carer of the person, and any other person who has a genuine and sufficient interest in protecting the person’s best interests.

• Palliative care means reasonable treatment for the relief of pain, suffering and distress provided to a person: 
  • with an active, progressive and advanced disease; and
  • who has little or no prospect of cure; and
  • who is expected to die; and
  • for whom the primary goal is to optimise the quality 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 i.e. a decision to commence, continue, withdraw or withhold health care, unless there is evidence to the contrary.

A person who has difficulty with any of the following may have impaired capacity to make a health care decision:

• understanding and retaining information about the health care decision;
• weighing the information in order to make a decision;
• communicating that decision in some way;
• understanding the effect of the decision.

A person will understand information if they understand an explanation of the information given in a way that is appropriate to the person's circumstances e.g. by using modified language, visual aids or other means. Similarly, a person will be able to communicate the health care decision if they communicate the decision in a way appropriate to their circumstances e.g. by using modified language, visual aids or other means.

If the person has impaired decision-making capacity, a health care decision-maker will need to make the health care decision, unless the person made an advance consent decision in an Advance Personal Plan (discussed on the Northern Territory Advance Care Directives webpage).

This situation may arise when a person nears the end of their life. The health care decision-maker’s decision has the effect of being as though the person with impaired capacity had made the decision.

Find out more about the law on capacity in the Northern Territory at Capacity and consent to medical treatment or in the Northern Territory Public Guardian’s guidelines:

• Adult Health Care Consent Flowchart
• Determining decision making capacity for a health care decision guideline.

Who can be a substitute decision-maker for health care decisions at the end of life?

If a person with impaired capacity previously made an Advance Personal Plan making an advance consent decision about their health care or medical treatment, that direction must be followed (unless there is a legal exception – this is discussed on the Northern Territory Advance Care Directives webpage).

The person may also have appointed a person in an Advance Personal Plan with authority to make the health care decision (an Advance Personal Plan decision-maker). If that is the case, the Advance Personal Plan decision-maker will be the person’s health care decision-maker and may decide.

If the person does not have an Advance Personal Plan, the first person on the following list who is willing and able to decide can be the person’s health care decision-maker:

• A guardian of the person with health care authority appointed under the Guardianship Act;
• A relative of the person who is considered by Aboriginal or other customary law or tradition to be the appropriate person to be a health care decision-maker;
• The person’s:
  • spouse or de facto
  • carer (they must not be providing care as a service on a commercial basis)
  • child
  • parent
  • sibling
  • friend

so long as they have a close and continuing relationship with the person. What constitutes a close and continuing relationship is discussed in the Northern Territory Public Guardian's Determining the appropriate health care decision-maker guideline.

The Public Guardian may make the decision as a last resort if:

• there is no health care decision-maker willing and able to decide, or
• the person’s guardian or Advance Personal Plan decision-maker is not willing and able to decide, and an application to the Northern Territory Civil and Administrative Tribunal (NTCAT) for an order about who should be the decision-maker has not been made.

If an Advance Personal Plan decision-maker or guardian exists but is not willing and able to make the health care decision, they must apply to the NTCAT for an order, unless it is not reasonably practicable to do so. The NTCAT can decide who should be the health care decision-maker, or may make the decision itself. The Public Guardian will be the health care decision-maker for a person if an application is required but not made.

Find out more about health care decision-makers and consent in these NT Public Guardian guidelines:

• Determining the appropriate health care decision-maker guideline
• Making health care decisions guideline
• Adult Health Care Consent Flowchart
• Determining decision making capacity for a health care decision guideline 
• Routine health care guideline.

What is supported decision-making?

Supported decision-making is a process that involves providing support so that a person, such as a person with a cognitive impairment, can make their own decisions with assistance and participate in decision-making.

In the Northern Territory, a person will have decision-making capacity for medical treatment if they can make a decision with appropriate support. Before making a decision for the person, a health care decision maker must make a reasonable effort to use any practicable support appropriate to the circumstances to assist the person to make the health care decision themselves. They may also consult other people who may have relevant information e.g. carers, family members.

Examples of support, provided by the Northern Territory Public Guardian’s office, are:

• Using technology, or visual aids, modified language, or formats or information tailored to the person’s needs;
• Communicating or assisting the person to communicate;
• Providing access to an interpreter;
• Giving the person additional time and discussing the matter with the person.

Supported decision-making is one of the decision-making principles that govern how health care decision-makers should make decisions. These principles, including supported decision-making, are discussed below (see How do health care decision-makers make decisions?).

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 is an independent Tribunal that has the power to:

• make certain orders about health care or health care decision-making;
• 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.

Under the HCDM Act, an application may be made to NTCAT for an order to:

• limit or vary a health care decision or a health care decision-maker’s authority;
• decide who is the appropriate health care decision-maker for a person with impaired decision making capacity;
• if a person is not willing or able to make a health care decision, determine who should be the health care decision-maker or make the health care decision itself;
• approve or allow any practice or health care for which a health care decision-maker has no authority;
• disregard an advance consent decision;
• provide for any related matter it considers necessary.

An application to the NTCAT may be made by a health care provider caring for the person, a health care decision-maker, the Public Guardian; or any other person who the NTCAT is satisfied has a special interest in the affairs of the person. An application must be commenced as soon as practicable.

In relation to Advance Personal Plans, the NTCAT can make declarations about matters including:

• whether the person has impaired decision-making capacity
• the validity of a plan
• whether a statement (in a plan) about health care action is an advance consent decision or an advance care statement
• whether an advance consent decision or an advance care statement applies
• the authority of a decision-maker
• orders to amend an Advance Personal Plan.

The Tribunal must act in accordance with the  decision-making principles under the relevant Act. For more information visit the NTCAT.

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. It has a number of functions relating to substitute decision-making at the end of life.

The Public Guardian can:

• be appointed as an Advance Personal Plan decision-maker or guardian.
• be a health care decision-maker (only if no one else is willing and able to decide, or if ordered to by the NTCAT).
• when a health care decision-maker refuses significant treatment for a person with impaired capacity, take action if appropriate in the circumstances.

The Public Guardian must act in accordance with the guardianship principles. If appointed as an Advance Personal Plan decision-maker or a health care decision-maker, it must apply the decision-making principles under those Acts.

For more information visit the Office of the Public Guardian.

What health care decisions can a health care decision-maker make?

A health care decision-maker can make health care decisions, which are decisions about consenting or refusing consent to commencing, continuing, withdrawing or withholding health care. The decision may be about health care provided in specific circumstances, or as a course of health care provided over a period of time. Health care is defined widely to include any kind of health care as part of a broad range of health care services. It does not include restrictive practices.

A health care decision-maker cannot refuse pain and symptom relief for a person. This is discussed further on the Pain relief webpage.

A guardian can make health care decisions if they have authority to do so under a guardianship order. The decisions they make are governed by the order, and the HCDM Act and the APP Act.

As discussed earlier, in limited circumstances the NTCAT will have power to make the health care decision.

How do health care decision-makers make decisions?

Decision-making by health care decision-makers

Before deciding for the person, a health care decision-maker (including an appointed guardian) must make a reasonable effort to support the person to make the health care decision themselves. The types of support that make be provided are discussed above under ‘What is supported decision-making?’.

If the person cannot make a decision with support, health care decision-makers must follow the decision-making principles to make the decision for the person. The principles, and other useful guidance, is set out in the NT Public Guardian Making health care decisions  guideline. The decision-maker must:

1. Make a decision that aligns with the person’s views in their advance care statement (if they made an Advance Personal Plan).

2. If there is no advance care statement, make the decision they believe the person would have made in the circumstances. To determine this, they must consider:

• the person’s current and previously stated decisions, views, wishes and objections about the matter (including in an Advance Personal Plan); and
• the health care decision-maker's personal knowledge of the person.

The decision-maker must make the decision the person would have wanted even though it might not be in the person’s best interests (but cannot decide to give the person addictive substances without therapeutic benefit).

3. If the decision-maker does not know what the person would have wanted, they must make a decision they believe is in the person’s ‘best interest’. To determine this, they must:

• consider factors including:
  • protecting the person from harm, neglect, abuse and exploitation;
  • providing the person with appropriate care;
  • protecting the person's freedom of decision and action;
  • enabling the person to be as independent as practicable;
  • maintaining the person's right to be treated with dignity and respect;
  • enabling the person to maintain their preferred living environment and lifestyle;
  • maintaining or creating a positive support network for the person.
• assess these considerations by giving each of them the weight the decision-maker believes is appropriate. This involves deciding in a way that:
  • is the least restrictive of the person’s freedom of decision and action as is practicable, and
  • provides the person with as much support as is practicable to make the person’s own health care decisions.

Decisions by Advance Personal Plan decision-makers

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 the decision-making principles (discussed on the Northern Territory Advance Care Directives webpage).

Can a health care decision-maker override a person’s decision?

A health care decision-maker does not need to follow a person’s advance care statement, or make a decision they believe the person would have, if doing so would be impracticable, unlawful, impose a burden on another person that is so unreasonably onerous that is justifiable to override the person’s wishes, or involves giving the person addictive substances without therapeutic benefit. They must keep a written record of reasons for not complying.

The health care decision-maker can also disregard an advance care statement if:

• the person, when they had capacity, made a subsequent written declaration stating that the person does not want to give effect to the advance care statement; or
• there is no reasonable possibility the person would have intended the statement to apply in the circumstances.

Can health professionals withhold or withdraw treatment without the consent of a person's health care decision-maker?

No. It is unprofessional conduct if a health professional performs health care, including withholding or withdrawing life-sustaining treatment, without consent on a person with impaired capacity. The only time a health professional can act without consent is if there are other laws in the Northern Territory which allow this to occur e.g. in an emergency situation or where health care is routine.

Health professionals have no duty to treat a person if the treatment would be of no benefit, not in the person’s best interests, or futile. This is the case even if a person's health care decision-maker requests treatment. Where treatment is futile or non-beneficial, a health professional is not required 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 on futile or non-beneficial treatment at Adult Treatment Decisions.

When can urgent treatment be provided, and is consent required?

Health care may be administered to a person with impaired capacity without consent if it is needed urgently to:

• save the person’s life,
• prevent serious damage to the person’s health, or
• prevent the person suffering or continuing to suffer from significant pain or distress, and

it is not practicable to delay the health care to obtain consent from the person (if the impaired decision-making capacity is temporary) or a health care decision-maker.

Urgent treatment cannot be given if the health provider knows the person has refused that health care in an advance consent decision, or a previously informed refusal when the person had decision-making capacity.

Find out more about the law on urgent treatment at Capacity and consent to treatment.