Key legislation and terminology
New South Wales (NSW) laws relating to withholding and withdrawing life-sustaining treatment and guardianship are contained in the Guardianship Act 1987 (NSW) (the Guardianship Act).
In the Act, the term ‘medical treatment’ includes most medical treatment normally carried out by a health professional, but does not specifically refer to withholding or withdrawing life-sustaining treatment. However, recent cases in the NSW courts have decided that the term ‘health care’ includes withholding or withdrawing life-sustaining treatment. Those decisions are referred to as ‘health care decisions’.
The Act also distinguishes between ‘major treatment’ which includes a wide range of treatments listed in section 10 of the Guardianship Regulation 2016 (NSW), and ‘minor treatment’, defined as treatment which is not special treatment, major treatment or treatment for a clinical trial.
A ‘person with disability’ is defined in the Act as someone who is intellectually, physically, psychologically or sensorily disabled, or otherwise disabled, or of advanced age, or mentally ill.
Substitute decision-making in New South Wales at the end of life
When will a substitute decision-maker be needed to make health care decisions and medical treatment decisions for another person at the end of life?
In NSW there are two categories of medical decisions which can be made: health care decisions and medical treatment decisions.
A person is presumed to have capacity to make both health care decisions and medical treatment decisions. If a person has impaired capacity and can no long make those decisions, a substitute decision-maker will need to make those decisions on the person’s behalf. This situation often arises as a person nears the end of their life.
Who can be a substitute decision-maker for health care and medical treatment decisions at the end of life?
If a person with impaired capacity has made a common law Advance Directive giving a direction about their health care or medical treatment, that direction must be followed. A substitute decision-maker is not needed as the decision has been made, but they may be consulted to help understand the Advance Directive.
If the person does not have an Advance Directive, 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 and medical decisions or provide consent to health care for a person with impaired capacity (in order of priority):
- An Enduring Guardian appointed by a person (when he or she had capacity) under an Enduring Guardian document. An Enduring Guardian must be over 18 years old and cannot be the person’s professional carer or a relative of their professional carer. In order for the Enduring Guardian to act:
- The person must ‘be in need of a guardian’ because the person, due to disability, is totally or partially incapable of managing his or her own affairs, and is restricted in major life activities to the extent that the person requires supervision or social habilitation; and
- The Enduring Guardian document must specifically grant the Enduring Guardian powers to make medical, dental and/or health care decisions.
Further information about Enduring Guardians is available from the NSW Trustee & Guardian website.
- A guardian or guardians appointed by the NSW Civil and Administrative Tribunal (NCAT) or the NSW Supreme Court. Anyone over the age of 18 who consents to being appointed may be a guardian, so long as the NCAT is satisfied that:
- the proposed guardian’s personality is generally compatible with the person with impaired capacity’s personality;
- the proposed guardian’s interests will not conflict with the interests of the person; and
- the person is willing and able to exercise the powers of a guardian.
The NCAT can appoint either a plenary guardian (with all the powers the person would have if they had capacity) or a limited guardian (with specific powers only). In practice, it is rare for NCAT to appoint a plenary guardian because the Tribunal cannot make an order for a plenary guardian if a limited guardian is all that is needed. If there is no one available or appropriate who can act as a guardian, NCAT may appoint the Public Guardian. More information about guardians is available at the NSW Public Guardian.
- A default decision-maker, known as a person responsible. This will be the first person in the following list (aged over 18) who is available and willing to make the decision:
- The spouse (husband, wife or de facto partner, whether of the same sex or a different sex) of the person with impaired capacity, if they are in a close and continuing relationship.
- An unpaid carer of the person with impaired capacity.
- A close relative or friend of the person, provided they maintain a close personal relationship with the person through frequent personal contact, and have a personal interest in the other person’s welfare.
Note that in NSW (unlike some other Australian States) a power of attorney can only be used to make financial decisions and cannot make decisions about health care or medical treatment
Substitute decision-making by New South Wales guardianship bodies
What is the role of the New South Wales Civil and Administrative Tribunal (NCAT) in relation to decision-making at the end of life?
At the end of life, the NCAT has power to consent to medical treatment for a person who has lost capacity if no person responsible is available or willing to provide consent, or if the person objects to the proposed treatment and there is no guardian who can override those objections. The NCAT may also:
- appoint a guardian (who may withhold or withdraw life-sustaining treatment so long as the NCAT grants them power to make health care decisions);
- vary or revoke an Enduring Guardian or guardian’s appointment; and
- provide advice or directions to guardians about how their powers should be exercised.
Major medical treatment
The NCAT can make decisions regarding major medical treatment for a person with impaired capacity. Examples of major treatment include treatment that involves a substantial risk of death or serious harm to the patient, or in some cases the administration of a general anaesthetic.
Major treatment does not include withholding or withdrawing life-sustaining treatment. Decisions in recent NSW cases have determined that the NCAT does not have power to refuse or withdraw consent to life-sustaining treatment. However, the NCAT may withhold consent to treatment, which would have a similar effect as refusing treatment.
In consenting to medical treatment, the NCAT must consider:
- the views of the person with impaired capacity, the person (i.e. the health professional) proposing the treatment and the person responsible;
- the person’s condition, alternative treatments available, the nature and effect of treatments, significant risks of the treatment, and reasons for the proposed treatment; and
- the need to ensure the adult is not deprived of necessary medical treatment.
The NCAT must not consent to the treatment unless it is the most appropriate form of treatment to promote and maintain the person’s health and wellbeing.
Further information about NCAT’s role is available from NCAT.
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 legislation. It has a number of functions relating to substitute decision-making at the end of life. The Public Guardian can:
- be appointed as a guardian if no one else is available to make a decision about medical treatment and health care for a person who has lost capacity; and
- make a decision, as guardian, if the appointed guardian dies and there are no surviving or alternative guardians.
Unlike some other States and Territories, the NSW Public Guardian does not have power to intervene and make a decision to resolve a disagreement within a family or between family and treating health professionals about appropriate treatment, or where decisions are being made inappropriately. The NSW Public Guardian can provide information and advice to the community about end of life decision-making and the NSW guardianship regime. For more information and contact details, visit the Public Guardian.
Health care decision-making by a substitute decision-maker
What health care and medical treatment decisions can a substitute decision-maker make?
Whether or not a substitute decision-maker can consent to or refuse life-sustaining treatment depends on the type of decision-maker, and the appointment made:
- An Enduring Guardian document can grant an Enduring Guardian the power to consent to one or both of the following:
- Health care. This includes the power to refuse life-sustaining treatment.
- Medical or dental treatment decisions. In this situation the Enduring Guardian cannot refuse treatment and require that life-sustaining treatment be withheld or withdrawn. They can, however, decide not to consent to that treatment which could lead to it not being provided.
- The power of a guardian (including the NSW Public Guardian if appointed guardian) to consent to health care will depend on whether the NCAT makes a plenary or ‘full’ appointment (granting the person all the powers of a guardian), or a ‘limited’ appointment (which grants specific powers only):
- If there is a plenary appointment, the guardian can make all the decisions that the person could have made if they had capacity, including power to consent to or refuse health care (including life-sustaining treatment).
- If there is a limited appointment and the NCAT has granted that guardian power to make decisions about health care, then that will include the power to consent to, or refuse, life-sustaining treatment. However, if the ‘limited’ guardian is only able to consent to medical or dental treatment, they will not be able to refuse life-sustaining treatment. Despite this, the guardian could choose to withhold his or her consent to treatment, which may result in life-sustaining treatment not being given, and would have a similar effect as refusing treatment.
- A person responsible may consent to medical treatment, but does not have the power to refuse or withdraw consent to treatment, including life-sustaining treatment. A person responsible can however withhold consent to that treatment, which may result in life-sustaining treatment not being given (and may have a similar effect as refusing treatment).
Where the Public Guardian is appointed guardian, the Guardianship Standards, position statements and decision-making guidelines must also be followed when making a health care decision.
How do substitute decision-makers make decisions?
All substitute decision-makers, in deciding whether or not to consent to health care or medical treatment for a person at the end of life, must follow the general principles set out in the Guardianship Act. These principles include:
- the welfare and interests of the person without capacity is the paramount consideration;
- the person’s freedom of decision and action should be restricted as little as possible;
- the person should be encouraged to live normally in the community as far as possible;
- the person’s views should be taken into consideration;
- consideration should be given to the importance of preserving the person’s family relationships, culture and linguistic environment;
- the person should be encouraged as far as possible to be self-reliant in matters relating to personal, domestic and financial affairs;
- the person should be protected from neglect, abuse and exploitation; and
- the community should be encouraged to apply and promote these principles.
The substitute decision-maker must also consider the:
- views of the person with impaired capacity;
- person’s condition;
- alternative courses of treatment;
- risks of each course of treatment; and
- reasons why a particular course of treatment should be carried out.
The NCAT is also bound to follow the general principles. However, if asked to consent to medical treatment for a person with impaired capacity, the NCAT must only agree if it is the most appropriate form of treatment available for the person’s health and well-being.
Can a substitute decision-maker’s decision be overridden?
Yes. In NSW, if a health professional carrying out or supervising the treatment is aware or ought to be aware that the person objects to the treatment, or that the treatment is being carried out for a purpose that does not promote or maintain the person’s health or wellbeing, then the substitute decision-maker’s consent will not apply.
Can health professionals provide, 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).
A health professional can carry out major medical treatment (which does not include withholding or withdrawing life-sustaining treatment) without consent if they believe the treatment is necessary and urgent to save the person’s life or prevent serious damage to the person’s health. Minor treatment can also be carried out on a person without consent if there is no person responsible for the person, or if the person responsible is unavailable or unwilling to make the decision.
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 the law. Treatment can be provided without consent if the person’s health professional believes the treatment is urgent and necessary to save the person’s life, prevent serious damage to health, or prevent the adult from suffering significant pain and distress.
The NSW guardianship law does not address whether or not a health professional can withhold or withdraw treatment on an urgent basis without consent. However, if the health professional believes treatment would be futile, he or she does not have to provide such treatment, and the treatment can be lawfully withheld or withdrawn without obtaining consent.
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.
Any interested person, including a health professional, can apply to the NCAT to review or revoke the appointment of a substitute decision-maker, or to consent to medical treatment. The Supreme Court of New South Wales also has power to review the appointment of a guardian as well as hear disputes about end of life treatment.
For further information about such applications, contact NCAT.
Further information about the law at end of life and advance care planning is available from the NSW Government Planning Ahead website.
See also the following article which provides further information about withholding and withdrawing treatment in NSW:
White, Ben, Willmott, Lindy, Trowse, Pip, Parker, Malcolm, & Cartwright, Colleen (2011) The legal role of medical professionals in decisions to withhold or withdraw life-sustaining treatment: Part 1 (New South Wales). Journal of Law and Medicine, 18(3), pp. 498-522.