In 2016, the New South Wales Law Reform Commission was asked to review the Guardianship Act 1987 (NSW), having regard to UN Convention on the Rights of Persons with Disabilities and a variety of other matters.
With the submission date for comments on the draft proposals now closed, we look forward to the final report.
The Commission’s draft proposals, available here, are wide-ranging.
The Commission would like to see a new Act called the Assisted Decision-Making Act introduced to provide a formal framework for assisted decision-making. This Act would replace the Guardianship Act 1987, and the enduring power of attorney provisions contained in Part 4 of the Powers of Attorney Act 2003 (NSW).
This post highlights some of the most important changes the draft proposals would introduce.
New terminology, old concepts?
The Commission’s proposed legislation would introduce new terminology. A “guardian” would be called an “enduring representative” (when previously appointed by the “represented person” in anticipation of reduced decision-making ability in future), and a “representative” if appointed by a court or tribunal.
The term “guardian” would disappear, replaced with references to persons who do not have “decision-making ability” for the purposes of a health care decision.
The proposed legislation would introduce a new definition of “decision-making ability” and would link each person’s decision-making ability to the particular decision in question, recognizing that their ability can vary, depending on the circumstances, including the time at which the decision is made (proposal 1.14).
The Commission asserts that the Guardianship Act contains no “clear or consistent definition of decision-making ability or capacity” (p 5).
However, Part V of the current Act, which governs medical decision-making, does clarify when a person is incapable of giving consent to medical treatment: ie when a person is “incapable of understanding the general nature and effect of the proposed treatment” or is incapable of communicating their consent or lack of consent: s 33(2).
Where this test is met, the common law’s presumption in favour of consent will be displaced, and the provisions governing substituted decision-making under the Act will take effect.
In cases such as Re C (adult: refusal of medical treatment) [1994] 1 All ER 819, 824, courts have identified the ability to comprehend and retain treatment information, to believe it, and to weight it in order to arrive at a choice – as the necessary capabilities a person must have in order to have the capacity to make a medical treatment decision.
In Re C, the court ruled that a patient with schizophrenia retained capacity to refuse treatment that involved amputating his right leg, which was gangrenous and ulcerated.
The case illustrates that a person’s capacity to make decisions about their medical treatment is not an “all or nothing” question, but one that arises in relation to the specific treatment under consideration. Courts begin from a presumption of self-determination and inquire whether it is displaced on the facts.
Rather than relying on a presumption of capacity that may be displaced for the purposes of the particular medical treatment decision under consideration, the Commission’s proposals seek to introduce a definition of “decision-making ability (or capacity)” for all purposes.
Under the proposed legislation, a person would have decision-making ability if they can:
“(a) understand the relevant information;
(b) understand the nature of the decision and the consequences of making or failing to make that decision;
(c) retain the information to the extent necessary to make the decision;
(d) use the information or weight it as part of the decision-making process;
(e) communicate the decision in some way” (Recommendation 1.12).
However, for the reasons given above, this proposed definition does not appear to involve any genuine change to the pre-existing law.
New concepts: supported decision-making
In other areas, the Commission’s proposals clearly do involve substantive changes.
The Convention on the Rights of Persons with Disabilities, to which Australia is a party, recognizes the individual autonomy of all persons, including their right to make their own choices and their right to non-discrimination (Art. 3).
The Convention rights have contributed to a significant re-thinking of the current legislation.
The proposed legislation would introduce two new kinds of decision-making arrangements that have no counterpart in the Guardianship Act.
The first is “personal support agreements” – which formalise a situation where a supporter is appointed to assist a person to make decisions in particular areas of their life, such as health matters.
Under a personal support agreement, the supporter would be appointed by the represented person themselves, in anticipation of their future need.
The new legislation would set out the functions and responsibilities of supporters.
Those responsibilities include collecting information for the supported person, assisting them to communicate their decision, and advocating for the implementation of their decision.
The second mechanism is a “tribunal support order”. A tribunal support order would appoint a “supporter” whose role is to assist the supported person to communicate their decisions.
It’s important to note that a supporter would not be authorised to make medical treatment decisions themselves, on behalf of the supported person, without the knowledge or consent of the supported person.
This is significant: it illustrates that a “personal support agreement” is distinct from the concept of enduring guardianship under current legislation.
Similarly, a “tribunal support order” is distinct from the concept of a guardianship order.
But what if the person in need of support is profoundly disabled in a way that means they cannot communicate their wishes or preferences?
A third kind of arrangement, an “enduring representation order” could apply here. Here the analogy with an enduring guardian is appropriate: the enduring representative would be appointed by the represented person in anticipation that their decision-making ability might be reduced in future.
Under the proposed Act, the functions of the enduring representative, and limits on them, would be set out in the instrument of appointment.
Finally, the Commission envisages “representation orders” as a mechanism of last resort, which would replace current arrangements for guardianship and financial management under the Guardianship Act.
A “Public Representative” (who under the proposed legislation would replace the current “Public Guardian”) could be appointed as a person’s representative where no more suitable person was available.
The role of a “person responsible”, who is authorized to consent to major medical treatment in circumstances where no substituted decision-maker has been appointed (under Part V of the Guardianship Act) would continue.
Under Part V of the Guardianship Act, a person responsible cannot refuse life-supporting medical treatment, reflecting the fact that the purpose of Part V is to ensure that patients are not deprived of the treatment they need by their lack of capacity (s 32).
On the other hand, the legislation proposed by the Commission would extend to withholding or withdrawing a life-sustaining measure on behalf of the supported person (recommendation 6.14).
Furthermore, the regulation of medical decisions in Part V would be extended under the proposed legislation to cover health care decisions involving all health professionals who are regulated under the Health Practitioner Regulation National Law.
As a result, the restrictions on the provision of “special medical treatment” under the current Act would apply to “special healthcare” under the proposed Act.
While the current distinctions between “major medical treatment” (“major healthcare”) and “minor medical treatment” (“minor healthcare”) would be continued, the content of these terms would change.
For example, HIV testing and the contraceptive treatment are currently defined as “major medical treatment” in the Regulations; these would become “minor healthcare” in the proposed legislation (recommendation 6.12).
New concepts: prioritizing autonomy over best interests
A further example of the impact of Convention rights on the proposed legislation relates to the downgrading of “best interests” as a guiding principle for medical treatment involving persons who lack decision-making capacity.
Under the Guardianship Act, the substituted decision-making provisions found in Part V of the Act exist to ensure that patients are not denied medical treatment that they need by virtue of their lack of capacity to consent: s 32.
Caselaw has made it clear that Part V exists to provide a mechanism for lawfully administering treatment that is medically indicated and in the patient’s best interests. It was not intended to create a mechanism for refusing treatment life-sustaining medical treatment: FI v Public Guardian [2008] NSWACT 263. (Whether this distinction can be maintained is another matter).
Under the current legislation, the patient’s best interests are balanced through provisions that authorize a “person responsible” to make treatment decisions (s 40), while allowing treatment without consent to save the patient’s life or prevent serious damage to their health (s 37). “Minor medical treatment” may also be provided where a person responsible is not available to consent and where the patient does not object (s 37). Disputes may be resolved by the Civil and Administrative Tribunal or the Supreme Court.
The views of a person who lacks the capacity to consent to proposed medical treatment are relevant, and must be taken into consideration by a “person responsible” who is given substituted decision-making power under the Act: see s 40(3). However, the patient’s views are not determinative.
Similarly, when the decision maker is the Civil and Administrative Decisions Tribunal, the Tribunal is required to take several matters into consideration, including the views (if any) of the patient: s 44(2). However, the expressed preferences of a person who is incapable of consenting to medical treatment can’t trump the Tribunal’s assessment of that person’s best interests.
The Tribunal can only authorise medical treatment when it is satisfied that “the treatment is the most appropriate form of treatment for promoting and maintaining the patient’s health and well-being”: s 45(1).
(A person’s will and preferences are, of course, determinative in circumstances when they have made a valid advance directive in contemplation of their need for medical treatment at a time in future when they are not competent. Courts have given effect to the previously expressed wishes of a person to refuse life-supporting treatment, contained in an advance directive, even when their effect is to shorten the patient’s life: see, e.g., Hunter and New England Area Health Service v A [2009] NSWSC 761).
The primacy of the principle of the patient’s best interests, in circumstances where a patient is not competent to decide about medical treatment would disappear in the Commission’s proposed legislation.
The proposed Act would contain general principles, the first of which is that the will and preferences of a person in need of decision-making assistance should be given effect to where possible.
Anyone exercising functions under the Act should be guided by the person’s “expressed will and preferences”. If these cannot be determined, they are to be guided by the person’s likely will and preferences, as they emerge from a person’s previously expressed will and preferences and by consulting people who have a genuine and ongoing relationship with the person and may be aware of that person’s will and preferences.
If there is no such person, then – only then – are decisions to be made to promote the person’s personal and social wellbeing. (Advance care directives, previously made when the person had decision-making ability, must also be respected) (proposal 1.11).
One issue that arises is the amount of leeway or wriggle room these proposed changes give family and associates of the patient to make hearsay allegations about the values, desires and preferences of the patient around particular kinds of medical treatment – in circumstances where the patient lacks decision-making ability and there is no advance directive.
These assertions about the patient’s values and preferences are given considerable weight in the Commission’s proposed recommendations. The proposals are intended to honour the autonomy of a patient who cannot express it directly.
Will the proposed changes demonstrably serve the interests of those who lack decision-making ability – better than Part V currently does?
How much room is there for family and associates to act in their own self-interest – to the detriment of the person who lacks decision-making ability?
These are fair questions, especially since the proposed legislation would extend to refusals of life-supporting medical treatment, not only the provision of needed treatment to which a patient cannot consent.
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