Howard, Michelle --- "Principles for substituted decision-making about withdrawing or withholding life-sustaining measures in Queensland: a case for legislative reform" [2006] QUTLawJJl 11; (2006) 6(2) Queensland University of Technology Law and Justice Journal 166

PRINCIPLES FOR SUBSTITUTED DECISION-MAKING ABOUT WITHDRAWING OR WITHHOLDING LIFE-SUSTAINING MEASURES IN QUEENSLAND: A CASE FOR LEGISLATIVE REFORM

MICHELLE HOWARD[*]

I INTRODUCTION

In Queensland, the Guardianship and Administration Act 2000 (Qld) (GAA) and the Powers of Attorney Act 1998 (Qld) (PAA) (collectively referred to as the guardianship regime) comprise a scheme to facilitate substitute decision-making by and for adults with impaired capacity,[1] including decision-making about withdrawing or withholding life-sustaining measures (WWLSM).

A substitute decision-maker, who will most commonly be a family member or close friend,[2] making a decision about WWLSM must apply[3] (if the decision is made under the GAA), or comply with[4] (if the decision is made under the PAA), the General Principles[5] (GPs) and the Health Care Principle[6] (HCP)(collectively referred to as the Principles). The factors in the GPs must be applied or complied with when a decision is made under the scheme, whether it is a decision about financial or personal (including health) matters. The HCP must be applied or complied with in relation to health decisions, and is non-specific to life-sustaining measures.

This paper examines whether the Principles are adequate to effectively guide decision-making about WWLSM.[7] This examination considers the Queensland regime for decision-making about WWLSM, relevant aspects of the common law, the Principles, application of the Principles by the Guardianship and Administration Tribunal (GAAT or the Tribunal), and by a fictitious lay decision-maker through a case study, and analysis of issues arising from the application of the Principles.

The case study considered is as follows:

Rowena, a woman, aged 45, had an hypoxic brain injury following a cardiac arrest during routine surgery nine months ago. She can breathe independently, but receives artificial nutrition and hydration (ANH) through a Percutaneous Endoscopic Gastrostomy (PEG). Six months after the cardiac arrest, she was diagnosed as in a Post-Coma Unresponsive (previously referred to as vegetative) state[8] and her health providers recommend WWLSM, namely ANH. The health providers have told her husband, Mark, that continuation of ANH would be inconsistent with good medical practice (GMP). Mark is her statutory health attorney by virtue of the operation of the Queensland guardianship regime, and able to make the decision about whether Rowena’s ANH is stopped. Shortly before Rowena’s heart attack occurred, she told her family that she believed that medical science would be able to cure virtually all conditions within 5 years, and she would want all treatment available to keep her alive.

The paper concludes that the Principles are not adequate as guidance for decision-making about WWLSM. Legislative reform is recommended.[9]

II QUEENSLAND REGIME

Assessment of the adequacy of the Principles to guide decision-making is informed by understanding the context in which they operate. For this reason, brief consideration is given to other relevant provisions of the guardianship regime.

A Overview of Legislative Scheme

The purpose of the GAA is to strike a balance between the right of an adult with impaired capacity to the greatest possible degree of autonomy and the right to adequate protection and support for decision-making.[10] The GAA acknowledges that the adult’s right to make decisions is fundamental to dignity and should be interfered with to the least possible extent.[11]

1 General Provisions about Health Care

The GAA provides for an offence of carrying out health care without authority.[12] Essentially, consent is necessary for all health care for an adult with impaired capacity, unless the GAA or another Act provides otherwise, or it is authorized by the Supreme Court.

The GAA specifies an order of priority for dealing with health matters under the Act where an adult has impaired capacity and consent is required.[13] The decision can only be made in accordance with the first applicable option in the priority list.[14] The list specifies the order of priority as follows: first, in accordance with a direction in an adult’s advance health directive (AHD);[15] second, where the Guardianship and Administration Tribunal (GAAT or the Tribunal) has appointed a guardian for the matter or made an order about the matter, by the guardian or under the order;[16] third, where the adult made an enduring document/s appointing an attorney for the matter, by the attorney appointed by the most recent enduring document;[17] and last, by the statutory health attorney (SHA).[18] A person, who will usually be a spouse, unpaid carer or close friend or relative, becomes a SHA for an adult with impaired decision-making capacity by virtue of the operation of the PAA.[19] Where there is disagreement about a health matter for an adult between guardians, attorneys or eligible statutory health attorneys, the Adult Guardian can mediate, and if unresolved, may exercise power for the health matter.[20A]

In most cases, the decision-maker will be a lay decision-maker who has been appointed as attorney for health matters or is SHA under the PAA. As referred to earlier, the Principles must be applied or complied with by the decision-maker.[20]

2 Specific Provisions for Decisions about WWLSM

Health care is defined to include WWLSM for an adult if commencing or continuing the life-sustaining measure (LSM) would be inconsistent with GMP. [21]

The guardianship regime provides for WWLSM without consent in an acute emergency in limited circumstances where the decision must be taken immediately in accordance with GMP.[22] It does not apply where the health provider knows the adult objects,[23] and does not apply to ANH.[24]

Where a decision about WWLSM is made by a substitute decision-maker under the regime for health decision-making, consent cannot operate unless the health provider for the adult considers commencement or continuation of the LSM would be inconsistent with GMP.[25]
A LSM is health care intended to sustain or prolong life that supplants or maintains vital body functions which are unable to operate independently, and include cardiopulmonary resuscitation (CPR), assisted ventilation, and ANH.[26]

III COMMON LAW

It is necessary to consider the common law, as a step in establishing the adequacy of the Principles to effectively guide decision-making about WWLSM as it has been relied upon in decision-making under the legislative regime. To establish the context, it should be noted that the right to autonomy or self-determination is fundamental to health law.[27] Patient consent renders the giving of health care lawful.[28A] A competent patient may refuse treatment, even life-saving treatment.[28] An ‘incompetent’ (this is the commonly employed terminology in the common law literature) patient has the same right.[29] However, there is no recognized common law right to compel a health provider to provide treatment which the health provider does not consider clinically indicated.[30A]

A The Position of the Incompetent Person

A binding anticipatory directive refusing treatment may be given in advance of loss of capacity.[30] Where there is no valid advance directive, appropriate medical treatment may be given to an incompetent patient as a matter of necessity where it is in the patient’s best interests.[31] Similarly, life-sustaining treatment may be withheld or withdrawn in the patient’s best interests. In the seminal case of Airedale NHS Trust v Bland,[32] (Bland’s Case) the House of Lords considered that artificial nutrition and hydration (ANH) could lawfully be withdrawn from a patient in a persistent vegetative state (PVS) because the treatment was considered futile, and a responsible body of medical opinion was to the effect that continued existence in PVS was not a benefit to the patient. It was not considered in the best interests of Anthony Bland for treatment to continue. Reference was made to considerations other than medical opinion, but it is difficult to see how they were factored into the assessment of best interests.[33]

The best interests test has been applied in cases where declarations have been sought as to the lawfulness of discontinuing life-sustaining measures, including in Bland’s Case and Auckland Area Health Board v Attorney General,[34] and where the decision is made in the parens patriae jurisdiction, including, Re G[35] and Messiha v South East Health.[36]

Numerous United Kingdom cases about WWLSM have been decided since Bland’s Case and have articulated numerous non-medical factors as relevant, as well as medical opinion.[37] Recently, the English Court of Appeal has stated that best interests includes every possible consideration, including medical, emotional and other matters.[38]

At common law, there has been one Australian decision allowing withdraw life-sustaining treatment for an incompetent person.[39] The decision of the New South Wales Supreme Court in Messiha v South East Health[40] does not provide detailed consideration of relevant law. Essentially, doctors decided to terminate life-sustaining measures. The adult’s family opposed this and applied in the parens patriae jurisdiction for an order to prevent the withdrawal. The Court considered best interests the applicable test. It considered it would be an unusual case where the Court would act against unanimous medical views: this was said to be acceptance of the fact that a decision about appropriate treatment is principally a matter of medical opinion.[41]

Despite apparent increasing emphasis on non-medical considerations, the factors to be taken into account other than medical opinion lack specificity. Courts adopting the test have criticized it as a basis for decision-making.[42] Academics have criticized it for paternalism and medicalisation of life-ending decision-making.[43] An eminent jurist has criticised the best interests test, in the context of decision-making about sterilisation, as creating an unexaminable discretion in the hands of the decision-maker, exercise of which is dependent on the value system of the decision-maker, and which provides no hierarchy of values and no legal principle.[44]

IV THE PRINCIPLES

A Preliminary Description and Analysis of Principles

The text of the Principles in the GAA is reproduced in Appendix One.[45]

Some of the Principles are general statements of rights applicable to all adults. For example, GPs 1, 2, 3, 4, and 11 and HCP 12(4) express general rights. Application of some of the Principles may suggest that a decision be made in a particular way in a specific fact situation which has arisen, but of themselves are imprecise in meaning. For example, GPs 5, 6, 8, 9, 10 and HCP 12(1). Some suggest a process to be adopted for decision-making, namely GP 7 and HCP 12(2) and 12(5). It is possible that application of different principles will suggest different outcomes in any given situation. There is no prescribed priority or hierarchy to suggest some principles are more important than others or any procedure to resolve conflict arising when application of different principles suggests different outcomes.

Not all of the Principles appear to be relevant to decisions about WWLSM. Those that appear most obviously of likely relevance are GP 1, 2, 3, 7, 9, 10 and HCP (1)-(4).

B Relevant History

When analysing the adequacy of the Principles to effectively guide decision-making, it is useful to briefly consider some historical matters.

1 Explanatory Notes and Parliamentary Debate

The explanatory notes to the PAA and GAA do not explain the manner in which Parliament intended the Principles to be applied generally. However, the second reading speech[46] to the PAA, suggests that application of the principle of substituted judgment[47] requires that an attorney should where possible make the decision the adult would have made if able.[48] Of course, under the PAA, there was no provision for WWLSM by a substitute decision-maker; and in respect of the GAA, no reference was made to application of the principles for decisions about WWLSM. At the time the GAA was enacted, the proposed regime was different from the current regime: in the absence of an AHD, GAAT alone had power to decide about WWLSM.[49] The Attorney-General suggested that broad principles were integral and appropriate to give statutory recognition to rights of people with a decision-making disability whilst shielding against abuse and exploitation.[50]

Subsequently, the Guardianship and Administration Act and Other Acts Amendment Act 2001(Qld) was passed. The purpose was to overcome the requirement that all decisions about withdrawing and withholding of life-sustaining measures be made by GAAT, where there was no AHD.[51] It provided for a guardian or attorney (including a SHA) to consent to WWLSM. WWLSM was no longer ‘special health care,’ but ‘health care.’ It provided for amendment to the HCP so that health care decisions could authorize health care which was, in all the circumstances, in the adult’s best interests.[52]

Concerns were raised[53] that inclusion of a best interests criterion adopted the common law as set out in Bland’s Case. The Attorney-General amended the Explanatory Notes to delete reference to Bland’s Case and stated

The purpose of the amendment is to ensure that the phrase ‘in all the circumstances in the best interests of the adult’ is not read as an endorsement of all the interpretations that the phrase ‘best interests’ was given in the case of Bland. In other words we are not adopting the interpretation of ‘best interests’ that was canvassed by the court in the English case of Bland. Rather, the phrase ‘in relation to withholding or withdrawing life-sustaining measures’ reflects the proposition that when death is inevitable, regardless of the treatment administered, the administration of futile measures that only secure a precarious and burdensome prolongation of life may not be in the best interests of the adult.[54]

The Act was passed. Despite the amendment to the explanatory notes, Bland’s Case was part of the common law. As will be explored in the next section, the Tribunal has relied upon the common law meaning of best interests in cases concerning the withdrawing or withholding of life-sustaining measures.

V APPLICATION OF THE PRINCIPLES

A GAAT Decisions about WWLSM

Only two relevant cases, Re MC,[55] and Re HG,[56] have been decided since the 2001 amendments commenced operation.

Re HG, is a recent GAAT decision, in which consent was given for WWLSM. The adult was diagnosed as in a locked-in syndrome following a stroke. It was thought he probably retained his pre-stroke cognition (which was impaired as a result of other medical conditions). Although not all of them were applied, the approach taken to the application of the Principles is significantly more detailed than in earlier GAAT decisions, as discussed below. More attention is given to explication of the application of the Principles. It applied GP 2, 3, 7(4), 10 and HCP 12 (1). In respect of GP 2, GAAT identified that the adult had the right to refuse medical treatment.[57] In applying GP 3, an explanation is provided for the interpretation adopted.[58] There is a clear statement that the Tribunal is exercising power under the HCP 12 (1)(b), in the adult’s best interests, as that term is understood as it evolves at common law.[59] It briefly reviewed the common law and the current wide interpretation of relevant factors, and then articulated factors it considered relevant to determining best interests.[60] There is no substantive explanation[61] as to the basis for ignoring some Principles.

In Re MC, the adult was diagnosed as in PVS. GAAT consented to WWLSM, namely ANH.[62] The decision appears to accord some priority to best interests and least restrictive of rights principles over other principles.[63]

The Tribunal noted its obligations to apply the Principles.[64] Reliance was placed upon Bland’s Case, the Auckland Area Health Board v Attorney General,[65] and Re G,[66] in relation to best interests.[67] Discussion about those cases centred on statements that it was not in a patient’s best interests for futile treatment which was of no benefit to a patient to be continued. GAAT also stated that, when determining best interests, consideration was given to medical opinion; (a substituted judgment about) the views of the adult; and views of the family,[68] and that GAAT was not satisfied it was in MC’s best interests for ANH to continue. It is not clear how the non-medical matters were identified as relevant, how they should be, or were, taken into account and weighed to reach the conclusion, in this case, that it was not in MC’s best interests for ANH to continue.

Discussion then moved to application of other principles. Ongoing ANH was not considered the option least restrictive of the adult’s rights, as GAAT considered a patient had a right to receive ordinary treatment, (as opposed to extraordinary treatment, including futile treatment), and a right to refuse treatment.[69] In relation to the GPs; only GP 3[70] and GP 7(4),[71] were applied. In relation to GP 3, it was considered that MC’s right to respect for human worth and dignity was not accorded by continuing futile treatment. Applying GP 7(4), reliance was placed upon evidence that MC was a private person who would not have consented to the treatment.[72] Notably, HCP 12(2) was applied. [73] As a matter of statutory interpretation, HCP 12(2) seems irrelevant.[74] The support of the attorney for health matters (a son of the adult) and palliative care experts for withdrawing of ANH was separately noted towards the end of the reasons for decision.[75] GAAT did not indicate under which principle it considered these matters relevant. It seems they would already have been considered under best interests.[76]

No explanation was given for according priority to some principles over others,[77] nor about how factors (other than medical opinion) relevant to best interests were identified and taken into account. There was no explanation for failure to apply some principles at all. In respect of the best interests criterion, it is possible that application of the other principles was intended to be the consideration of best interests. With the exception of the application of GP 3, they appear to broadly equate to the matters said to be relevant to best interests. Such an approach is arguably supported by the reference in HCP 12(1)(b)(ii) to in all the circumstances in the adult’s best interests.[78] If this was the process GAAT embarked upon, it did not clearly articulate it; in any event, the finding that continued treatment was not in MC’s best interests preceded consideration of the other principles.[79] It is suggested that the Tribunal’s selection of principles applied and interpretation of them was subjective and alternative constructs were equally feasible. For example, human worth and dignity was considered to be compromised by futile medical treatment.[80] Equally, GP 3 could be interpreted to indicate that the adult’s human worth and dignity is to be recognized and respected irrespective of the level of disability present.[81] HCP 12(4), recognizing a right to refuse treatment, appears to have been interpreted to mean that treatment would be refused.[82]

Re RWG[83] involved an adult with a brain stem injury. An order was made by GAAT to WWLSM, namely CPR. Application to withhold antibiotics in the future in the event of sepsis was refused, because it was speculative.[84]

Although a best interests consideration did not form part of the HCP at this time, GAAT applied the common law.[85] GAAT stated that it was required to apply the GPs, the HCP (to the extent it was applicable to WWLSM decisions)[86] and the common law.[87] GAAT considered that the GPs, (especially the adult’s same human rights, and right to be respected for his human worth and dignity) and the HCP (taking into account the views of the adult, the health care provider and the SHA), and the common law principles as set out in Bland’s Case, lead to the conclusion that CPR would not be of any benefit to the adult, and therefore not in his best interests.[88]

The best interests test was applied. GAAT seems to have considered that any treatment which was of no therapeutic benefit was not in the adult’s best interests,[89] suggesting that only medical opinion was considered relevant to a determination of best interests. Although GAAT identified the need to apply the GPs,[90] it did so selectively without reference to why some GPs were ignored. Reference was made to adults’ same human rights (although, no relevant rights were identified) and right to respect for human worth or dignity. However, no meaningful effect is given to these principles.[91]

Lastly, in Re TM,[92] the adult had Alzheimer’s Disease. Oral feeding was no longer considered safe and recommendations were made for it to cease. GAAT consented to WWLSM, namely ANH.

GAAT found that the adult was in the terminal phase of illness and that as a matter of substituted judgment, would not have wanted ANH, which could compromise her dying. It applied Bland’s Case recognizing best interests as the appropriate test for decision-making. The Tribunal was not satisfied the PEG would provide a therapeutic benefit and therefore was not in the adult’s best interests.[93] Again, it appears that medical opinion only was thought relevant to best interests assessment. Once again, GAAT merely acknowledged the statements in the GPs, especially the adult’s right to respect for her human worth and dignity, and recognized that she had the same rights as other members of society.[94] The Tribunal was not satisfied the provision of the PEG was the option least restrictive of the adult’s rights, and considered it least restrictive to allow the adult not to receive it and to be allowed to die.[95]

Other principles were taken into account, GP 7(4) and HCP 12(2) in relation to the adults wishes.[96] In accordance with HCP 12(4), it was noted that an adult has the right to refuse treatment[97] and the Tribunal recognized that she would not want this treatment.[98] Also, in accordance with HCP 12(5) which is applicable only to special health care decisions, the Tribunal accepted the views of the SHAs, namely her children (who did not consider the treatment for her benefit) and the adult’s health providers, in this case the nursing home, but was persuaded by the views of the adult and her SHAs over the nursing home.[99]

Again, GAAT selectively applied the Principles. It undertook no meaningful application of GP 2 and 3. In assessing the option least restrictive of an adult’s rights, no rights are identified except perhaps a ‘right’ to die,[100] despite the fact that at least the right to refuse treatment was identified as generally relevant to the decision having regard to the wishes of the adult as found.[101]

It is suggested that the apparent shortcomings in the application of the Principles in GAAT decisions are demonstrative of the Tribunal’s struggle to make sense of how the Principles are to be applied in cases about WWLSM, and indicative of some of the difficulties which may arise when a lay decision-maker attempts to do so. It is of particular significance that the common law is heavily relied upon in relation to the meaning of ‘best interests’ and that little attention is given to identifying the ‘rights’ of the adult which are relevant to the application of a number of the Principles. A lay decision-maker will have no knowledge of the common law and limited understanding of legal rights. Accordingly, it is suggested that a lay decision-maker will find the Principles even more difficult to apply than the Tribunal.

B Application of Principles: Case Study

As observed earlier, the decision-maker will most often be a close friend or relative of the adult. In this part, it is intended to test application of the Principles against the case study set out in the Introduction of this article, with a view to considering difficulties which may arise for lay decision-makers.

For the purposes of the case study, Mark is not a lawyer, an ethicist or a philosopher. He has no knowledge of common law cases, nor any knowledge of GAAT cases about WWLSM. It is assumed that Mark has been given a copy of a fact-sheet listing the Principles.[102]

1 Application of the Principles

Consideration will be given to the difficulties a lay-decision-maker, in Mark’s position might encounter as the Principles are applied.

1 GP 1: presumption of capacity. This principle could confuse Mark. Despite the presumption, his wife does not have capacity. How he could apply this principle is not apparent.

2 GP 2: recognition of the adult’s human rights. Mark likely has no knowledge of the range of rights which this principle seeks to encompass. How rights to be taken into account are to be identified is not apparent.

3 GP 3: right to respect for human worth and dignity. The general tenor of the Principles strongly indicates that a person with impaired capacity does not have less right to respect for his or her human worth and dignity, than a person without impaired capacity. This principle could mean that the human worth of the person with impaired capacity is no less than before the impairment. In the alternative, in the context of WWLSM, it may mean matters which the adult, before loss of capacity, considered invasions to personal dignity, should be taken into account.[103] Mark may subjectively consider that dignity is lost because of loss of capacity. It is not apparent whether the decision-maker is entitled to take his or her own views into account.

4 GP 4-6: valued member of society; participation in community life; & encouragement of self-reliance. An adult for whom consent is sought to WWLSM will presumably have overwhelming disabilities and no longer be able to perform social roles, participate in community life or be self-reliant. It is difficult to formulate relevant application of these principles to a decision to WWLSM.

5 GP 7: maximum participation, minimal limitation & substituted judgment. The adult had not anticipated precisely the medical circumstances in which she now finds herself. However, she did express clear wishes to be kept alive in any circumstances. A substitute decision-maker in Mark’s position might likely consider that, as an exercise of substituted judgment, Rowena would not consent to withdrawing ANH.

6 GP 8: maintenance of the adult’s existing supportive relationships. To maintain existing supportive relationships, consent for WWLSM cannot be given. This principle may appear to suggest that consent cannot be given for WWLSM in any circumstances where there are supportive relationships. However, the decision-maker will be aware that it can be given.

7 GP 9: maintenance of cultural environment and values. The importance of maintaining cultural environment appears irrelevant.[104] The importance of maintaining values is relevant. Mark will be aware of the adult’s religious views and other values. It appears that she values highly medical/scientific advancement and this may suggest to Mark that LSM should be continued.

8 GP 10: appropriate to circumstances. The adult has experienced a catastrophic medical event and requires significant medical treatment to live. Her substitute decision-maker may be unclear whether this GP means that he should make a decision which meets her current medical needs to survive, or whether it means he should accept her characteristics are such that she should not continue to receive treatment because the doctors believe she cannot recover.

9 GP 11: confidentiality. In the context of a decision about WWLSM, it is suggested this principle appears irrelevant and cannot be meaningfully interpreted in any way by a lay decision-maker.

10 HCP (1)(a) the power should be exercised in a way that is least restrictive of the adult’s rights. Mark may consider that if he consents, Rowena will have no rights: she will be deceased. But he will likely be uncertain what rights she has that are relevant. He may ultimately take irrelevant considerations[105] into account; fail to take relevant considerations[106] into account; or consider the principle raises interpretation issues which he cannot be expected to resolve.

11 HCP (1)(b)(i) necessary and appropriate to maintain or promote health or wellbeing or,(ii) in all the circumstances, in the adult’s best interests. A decision-maker might consider that not consenting to withdrawal of ANH maintains the health or wellbeing of Rowena as far as possible and that this Principle suggests that WWLSM may not be indicated in any circumstances under this limb of the principle. A lay decision-maker could be confused by its inclusion in principles intended to guide decisions about WWLSM.

Since the decision-maker will be aware that consent can be given to WWLSM, the other option of best interests will likely be considered. The meaning of best interests is imprecise. Considerations relevant to a determination are not specified. There is no indication whether the determination is to be made from the perspective of the adult, the health provider or the decision-maker. A decision-maker may consider it means that WWLSM which does not maintain health and well-being (and is therefore not covered by HCP 12(1)(b)(i)), can be given when it seems the ‘right thing’. Mark might reason that the doctors think that LSM should cease; it seems right from the medical point of view. Another possibility may be to tally up the answers the principles suggest, and calculate best interests according to the number supporting withdrawing ANH as opposed to those which suggest otherwise.

Ultimately, a decision must be made. A decision-maker, such as Mark, will likely decide that he must make his own value judgment about his wife’s best interests: this is the best he can do. Based on his values about life, he may conclude that that it cannot be in Rowena’s best interests for LSM to be continued.

12 HCP (2) & (3) when considering appropriateness, must take into account, the views/wishes of the adult and the information given by the health provider. It is suggested that ‘appropriateness’ is referred to in HCP 12(1)(b)(i) about maintaining a person’s health or well-being, and as a matter of statutory construction is not applicable to the best interests assessment. However, a lay decision-maker is likely unfamiliar with principles of statutory interpretation and may consider the principle is relevant to a determination of best interests.

13 HCP (4) the adult’s right to refuse health care. A lay decision-maker such as Mark may accept that Rowena has the right to refuse health care. However, in Rowena’s case, Mark would likely accept on the basis of her previous comments, that as a matter of substituted judgment the adult would not refuse further ANH.

After a tortuous exercise, a lay decision-maker would likely be left with the impression that some principles suggest WWLSM, and some suggest otherwise. The meaning of some of the principles is unclear or requires specialist knowledge that the decision-maker could not be expected to have, and therefore cannot be meaningfully applied or complied with.

VI ANALYSIS OF ISSUES ABOUT APPLICATION OF PRINCIPLES

Consideration of the application of the Principles by GAAT and the fictitious lay decision-maker in the case study have facilitated identification of issues relevant to analysing the adequacy of the Principles to effectively guide substitute decision-making about WWLSM.

A Difficulties Associated with Application of Broad Range of Non-Prioritized Principles

The Principles are broadly drafted. This affects their adequacy to effectively guide decision-making about WWLSM in several ways.

1 Some of the principles seem irrelevant to a decision about WWLSM.

The presumption of capacity enshrined in GP 1 is rebuttable.[107] This is meaningful to lawyers, GAAT and the Supreme Court. The legal concept of a rebuttable presumption is not one necessarily, or likely, known by lay decision-makers. A lay decision-maker, stricken with grief may be quite confused by the inclusion of a principle presuming the adult to have capacity. Of course, it is relevant for a decision-maker to be aware that an adult who has capacity can decide for themself whether to refuse LSM.

GPs 4, 5 and 6 appear irrelevant, since the decision will be requested in circumstances where an adult can no longer perform social roles, participate in community life and achieve maximum self-reliance. GAAT has not applied these principles to decisions about WWLSM. It is difficult to envisage a situation in which a decision-maker could do so.

GP 8 may appear relevant to a decision-maker. However, there is not an obligation to continue LSM indefinitely to maintain existing supportive relationships. It appears that GP 8 cannot be relevant to a decision about WWLSM. GAAT has not applied GP 8 in decision-making about WWLSM. Although it has not articulated a basis for this, most likely it has considered it irrelevant.

GP 11 requiring an adult’s right to confidentiality to be recognized and taken into account has no apparent relevance to a decision about WWLSM.[108] It is likely to cause confusion for a lay decision-maker attempting to diligently apply the principles.

HCP 12(1)(b)(i) provides for the exercise of power if necessary or appropriate to maintain or promote health or wellbeing. Before the 2001 amendments to the GAA, GAAT, when considering WWLSM, inventively suggested that this meant treatment should not be given if it was futile in medical terms, and applied the common law best interests test. It is suggested that the shortcomings of this principle in the context of decisions about WWLSM were recognized and legislative changes made, at least in part, to avoid the legal fiction of holding out a decision WWLSM as a decision ‘necessary and appropriate to maintain health and wellbeing’. It is suggested that it has no place as a part of the guidance provided to decision-makers in relation to decision-making about WWLSM. In Re HG,[109] and ReMC,[110] GAAT considered this principle irrelevant, stating that the HCP in WWLSM cases required it to make a decision in the best interests of the adult.

As earlier articulated, HCP 2 is suggested to be relevant to deciding whether exercise of power is appropriate, which is relevant to HCP 12(1)(b)(i). The 2001 amendments did not alter the ambit of 12(2) beyond relevance to deciding whether an exercise of power was appropriate. A decision-maker could be forgiven for thinking that appropriateness might refer to appropriateness of any health care decision. Indeed, in Re MC,[111] GAAT appears to have applied the principle.[112]

HCP 12(5) is relevant to decisions about special health care. It appears in the Principles in the GAA, but not the PAA. The decision about WWLSM is health care if commencement or continuation would be inconsistent with GMP, not special health care.[113] The case study considered a SHA who makes a decision under the PAA. Hopefully, a SHA would not be referred to this Principle. A guardian making a decision under the GAA would note its inclusion in the Principles provided to him or her. This is likely to confuse a lay decision-maker, who will not know what special health matters are, and may think that because of its life-ending consequences, that consenting to WWLSM must be special.

2 Difficulties with Interpretation of Principles in the Context of WWLSM

GP 2 requires recognition of human rights regardless of capacity. In relation to WWLSM, it is suggested that the intended application of this principle is unclear and likely to confuse a lay decision-maker who is unlikely to have any detailed concept of human and civil rights against which to identify possible relevant rights. To a lawyer who has a detailed knowledge of rights, consideration of different individual rights may nevertheless suggest different outcomes. In Re RWG,[114] and Re TM,[115] GAAT merely acknowledged that the adults had the same basic human rights as all adults: it did not identify any particular rights said to be relevant to application of GP 2. In Re MC,[116] the principle was not considered at all. It appeared that even GAAT had been unable to give this apparently fundamental principle meaning in this context. More recently in Re HG,[117] more attention was paid to application of the principle: the only right identified as relevant was the right to refuse treatment.[118]

GP 3 refers to recognition of the adult’s right to be respected for his or her human worth and dignity. Interpretation in a manner which suggests life as a disabled person (as a result of illness or accident) holds less worth or dignity arguably devalues the lives of those who are disabled. In Re MC,[119] GAAT took the view that human worth and dignity was lost by provision of futile treatment that did not allow the adult to die naturally. Lack of clarity, leaves it for decision-makers to determine subjectively what is meant and how to apply the principle.

GP 7(3) and GP 7(4) require that the adult’s views and wishes be sought, and where appropriate, the principle of substituted judgment be used to work out what the adult’s views and wishes would be. A substitute decision-maker must take those views and wishes into account. GP 7(1), (2) and (3) focus on an adult’s right to participate in the decision-making process as far as possible. It is clear that the adult’s views about the particular decision to be made are relevant. It is not clear, but possible, that there is a requirement to consider the adult’s views and wishes, actual or substituted, when applying the principles. For example, the identification of relevant rights under GP 2 in a WWLSM case could be undertaken as an exercise of substituted judgment. If this was the requirement, some subjectivity on the part of the decision-maker could be eliminated. It is suggested that the perspective from which the principles are applied is a significant issue and it will be separately considered further.

GP 9 requires that the importance of maintaining an adult’s cultural and linguistic environment and values be taken into account. Most people have some values, which may be culturally related, relevant to decisions about life and death and accordingly relevant to WWLSM, whether they be religious, spiritual, agnostic, atheist, existentialist or scientific. Dilemmas arise about how such values might impact upon a life-ending decision. An adult may be atheist and wish to be kept alive as long as possible, because they do not think there is existence after death. Despite spiritual beliefs, an adult may wish to receive all possible treatment because of other values. It is noted that in Re TM, [120] despite hearing some evidence about the adult’s religious beliefs, the Tribunal did not make findings of fact about values and did not apply GP 9.

HCP 12(1)(a) [as well as GP 7(3)(c)] requires that power be exercised in the way least restrictive of an adult’s rights. Once again, identification of relevant rights is problematic. GAAT has applied the Principle in such a way as to support a decision to WWLSM. In Re MC,[121] GAAT considered the right to refuse medical treatment and the right to receive ordinary medical treatment, (as opposed to extraordinary treatment), when determining the option least restrictive of an adult’s rights under HCP 12(1)(a). In Re TM,[122] it appears to consider a right to die.[123]

HCP 12(1)(b)(ii) requires that power must be exercised, in all the circumstances, in the adult’s best interests. There are no minimum considerations prescribed to guide a best interests assessment. It is suggested that prescription of a best interests consideration to guide decision-making about WWLSM is especially problematic. For present purposes, it is noted that the inclusion of best interests in the HCP invites GAAT to apply an arguably unsatisfactory body of common law for its interpretation and application; and lacks clarity as a stand alone concept for lay decision-makers. Because of the significance of this issue, the difficulties associated with ‘best interests’ will be separately considered.

3 Application of some principles suggests a different outcome to application of other principles

As the case study demonstrates, application of some Principles may suggest a decision should be made to WWLSM, and application of others may suggest otherwise. There is no mechanism for resolving a less than unanimous outcome. Should the decision-maker tally up those for and against, and the one with the greatest numbers prevails? Should the decision-maker decide to allocate greater weight to some Principles than others, as GAAT did in Re MC,[124] in pronouncing that the Principles meant that the decision must be the least restrictive of the adult’s rights and in the circumstances in the adult’s best interests? There is no justification apparent in the Principles themselves for adopting any of the possible approaches, since a decision-maker’s obligation is to apply[125] or comply with[126] the Principles. Accordingly, a decision-maker must subjectively overcome the lack of mechanism for resolving conflict in suggested outcomes.

4 Comment

It is suggested that Principles resulting in conflicting possible interpretations, apparent irrelevancies, and conflict between suggested outcomes without a mechanism for resolution, cannot be considered to constitute effective guidance for decision-making.

B Difficulties Associated with Autonomy and Perspective

Self-determination of adults with impaired decision-making capacity to the greatest extent possible is highly valued. It is reflected in the purpose and acknowledgments to the GAA.

As the case study demonstrates, subjective beliefs of the decision-maker may override the wishes of the adult in decision-making about WWLSM, since the adult’s wishes are only one factor to be considered in making the decision. White and Willmott[127] noted that factors to be considered in a health decision are wider than the adult’s wishes, and some may conflict with those wishes.

To accord self-determination, it is possible that, as far as practicable, the Principles were intended to be applied from the point of view of the adult. However, a requirement to do so is not clearly stated. GP 7(3) and (4) require that, to the greatest extent practicable, views and wishes of an adult, or a substituted judgment made about them, be taken into account. Having regard to the value placed on autonomy, this is arguably relevant to application of the Principles, rather than merely the particular decision to be made.[128] Some Principles probably cannot be applied from the perspective of the adult, for example, GP 1 and GP 7(1) and (5). Others could. If the application was undertaken in this way, then for example, in regard to GP 2, the adult’s views about human rights considered important could assist to identify the human rights which are relevant to the decision. A particular adult may highly value their right to refuse medical treatment, and may have done so regularly throughout their life, preferring to rely on natural remedies, or accept the course of illness as part of the human state. This would appear to be an appropriate basis for a decision-maker to determine that the right to refuse health care is an important and relevant right to this particular adult.[129] Another adult may have a history of accepting all possible treatments for their illnesses, and like Rowena, wish to continue doing so despite incapacity. For this adult, perhaps the right to refuse treatment is not a right which is valued. It does not appear that GAAT has considered that application of the Principles requires this approach when deciding WWLSM cases. A lay decision-maker is unlikely to be prompted to consider this possibility.

It is beyond the scope of this article to explore how a requirement to apply the Principles from the adult’s subjective perspective (which may result in a refusal to consent to WWLSM) could be reconciled with the general common law position that an adult cannot compel health care, only choose between offered treatments or refuse it.[130]

If it was intended that the application of the Principles be undertaken from the adult’s point of view where practicable, this is not clearly stated, although consistent with a reading of the Principles themselves and the legislative scheme.

C Difficulties Associated with Best Interests

As noted previously, HCP 12(2) does not prescribe considerations for determining best interests, despite the apparent relevance of the matters prescribed to a best interests assessment, namely the adult’s wishes and medical information. The Tribunal has looked to the common law for guidance about the considerations relevant to best interests. As noted, in the past, the Tribunal has relied heavily upon Bland’s Case, to determine best interests, although in Re HG it clarified that it adopted the meaning of best interests as it has evolved at common law.[131]

As noted, Courts have expressed their disquiet about the unsatisfactory nature of the best interests test, and about using the test to determine life and death questions, and have urged Parliaments to legislate in relation to the issue. As noted earlier, members of the Queensland Parliament expressed concern that insertion of a best interests consideration into the HCP adopted Bland’s Case. The Attorney-General amended the Explanatory Notes to delete reference to Bland’s Case. Amendment of the Explanatory Notes did not affect the common law. The Tribunal, when next faced with a WWLSM case, followed precedent about the meaning of best interests, in the absence of any legislative prescription as to considerations, and relied upon Bland’s Case. The Tribunal clearly considered it needed guidance. In the legal decision-making arena, it is appropriate that guidance be taken from common law.

If Parliament intended that the principles from Bland’s Case not be adopted into decision-making about WWLSM, it needed to ensure that the Tribunal, and other decision-makers, were provided with clarity around the considerations to take into account, so that the common law was irrelevant. It is worth stating the obvious: case law is evolutionary. Parliament, by leaving the prescribed matters relevant to best interests undefined, has left GAAT and Courts to interpret the test in accordance with developments in the common law and may include factors not considered by Parliament, and which Parliament finds undesirable, as it apparently found at least some of the principles flowing from Bland’s Case.

In the case of lay decision-makers, it is unlikely that the common law will guide a best interests determination. The lay decision-maker will most likely have no knowledge of common law. However, this leaves the substitute-decision-maker to form his or her own subjective opinion about what ‘best interests’ means, and take into account as many or as few matters as he or she considers relevant, from whatever perspective he or she prefers. It is suggested that most will likely strive to make what is considered to be the ‘right’ decision. In the absence of appropriate guidance, it is the best that can be hoped. It is not effectively guided principled decision-making.

The guardianship regime does not allow a decision to be made about WWLSM unless commencement or continuation of the LSM would not be consistent with GMP. At the very least, medical opinion will be taken into account in some way. However, issues about life and death are not purely medical matters. It is argued that it is inappropriate that medical opinion might be the only matter considered by some decision-makers. Health law generally, and the legislative regime,[132A] recognize (in the absence of emergency and minor treatment) that it is not appropriate for a health provider to impose health care on a person according to his or her own clinical judgment. As discussed earlier in this article, it is for the competent patient to decide to consent, or not, to offered health care according to his or her own preferences and ideas about illness, medicine, and a myriad of other matters as he or she thinks appropriate, and in the case of serious conditions, life itself. GP 2 specifically provides that all adults have the same basic human rights regardless of capacity. If an adult has impaired capacity, a substitute decision-maker must decide. It appears incongruous that medical opinion might be the only matter considered when a decision is made about WWLSM for a person with impaired decision-making capacity.[132]

The concerns Justice Brennan expressed about a best interests test guiding a sterilization decision[133] seem applicable in respect of the best interests test in the Queensland regime for decision-making about WWLSM. It is suggested that the arguments made in his dissenting judgment provide compelling criticism of ‘best interests’ as a test generally. He referred to the failure to identify relevant factors, reliance on the subjective values of the decision-maker, absence of a hierarchy of values, and lack of identifiable legal principle. These difficulties are mirrored in this current analysis. He also expressed concern that ‘best interest’ results in an unexaminable discretion in the decision-maker. The discretion is particularly unexaminable in the hands of a lay substitute decision-maker, upon whom there is no requirement to record any aspect of his or her decision-making process or provide reasons for decision. As noted earlier, the best interests test has also been criticized by academics on the basis of its paternalism.

In conclusion, insertion of a best interest’s consideration into the HCP seems generally at odds with the underpinning liberal philosophy of the legislative regime, and the other Principles. It also lacks any precise meaning, especially for lay decision-makers.

D Lack of Principle in Decision-making

It has been demonstrated that the generality of the Principles, results in a high degree of reliance on the decision-maker’s own values when applying them. The result is lack of identifiable principle in decision-making. Relevant factors are not clearly identified, substantial reliance on subjective value judgments of the decision-maker are necessary, there is no mechanism for balancing competing considerations, and overall no clearly identifiable legal principle in operation. It is suggested that this lack of principle in decision-making demonstrates the inadequacy of the principles to fulfil the role of effectively guiding decision-making about WWLSM.

VII CONCLUSIONS

This article has considered whether the Principles are adequate to effectively guide decision-making about WWLSM. Adequacy has been explored having regard to the analysis of relevant GAAT decisions and a case study. Difficulties relating to application of the Principles have been identified and analysed. Essentially, three difficulties identified relate to prescription of a broad range of non-prioritized principles; in particular, some are irrelevant, some lend themselves to difficulties of interpretation, and there is no mechanism for balancing of competing considerations. Another difficulty relates to lack of clarity about the perspective from which application of the principles is required to be conducted. Numerous difficulties were identified with the best interests consideration. Lastly, lack of principle generally in decision-making was identified.

The analysis has demonstrated that the Principles are inadequate to effectively guide decision-making about WWLSM. It is suggested that legislative reform is necessary.

Appendix One

GUARDIANSHIP AND ADMINISTRATION ACT 2000 - SCHEDULE 1 PRINCIPLES

PART 1 GENERAL PRINCIPLES

1 Presumption of capacity

An adult is presumed to have capacity for a matter.

2 Same human rights

(1) The right of all adults to the same basic human rights regardless of a particular adult's capacity must be recognised and taken into account.

(2) The importance of empowering an adult to exercise the adult's basic human rights must also be recognised and taken into account.

3 Individual value

An adult's right to respect for his or her human worth and dignity as an individual must be recognised and taken into account.

4 Valued role as member of society

(1) An adult's right to be a valued member of society must be recognised and taken into account.

(2) Accordingly, the importance of encouraging and supporting an adult to perform social roles valued in society must be taken into account.

5 Participation in community life

The importance of encouraging and supporting an adult to live a life in the general community, and to take part in activities enjoyed by the general community, must be taken into account.

6 Encouragement of self-reliance

The importance of encouraging and supporting an adult to achieve the adult's maximum physical, social, emotional and intellectual potential, and to become as self-reliant as practicable, must be taken into account.

7 Maximum participation, minimal limitations and substituted judgment

(1) An adult's right to participate, to the greatest extent practicable, in decisions affecting the adult's life, including the development of policies, programs and services for people with impaired capacity for a matter, must be recognised and taken into account.

(2) Also, the importance of preserving, to the greatest extent practicable, an adult's right to make his or her own decisions must be taken into account.

(3) So, for example--
(a) the adult must be given any necessary support, and access to information, to enable the adult to participate in decisions affecting the adult's life; and
(b) to the greatest extent practicable, for exercising power for a matter for the adult, the adult's views and wishes are to be sought and taken into account; and
(c) a person or other entity in performing a function or exercising a power under this Act must do so in the way least restrictive of the adult's rights.

(4) Also, the principle of substituted judgment must be used so that if, from the adult's previous actions, it is reasonably practicable to work out what the adult's views and wishes would be, a person or other entity in performing a function or exercising a power under this Act must take into account what the person or other entity considers would be the adult's views and wishes.

(5) However, a person or other entity in performing a function or exercising a power under this Act must do so in a way consistent with the adult's proper care and protection.

(6) Views and wishes may be expressed orally, in writing or in another way, including, for example, by conduct.

8 Maintenance of existing supportive relationships

The importance of maintaining an adult's existing supportive relationships must be taken into account.

9 Maintenance of environment and values

(1) The importance of maintaining an adult's cultural and linguistic environment, and set of values (including any religious beliefs), must be taken into account.

(2) For an adult who is a member of an Aboriginal community or a Torres Strait Islander, this means the importance of maintaining the adult's Aboriginal or Torres Strait Islander cultural and linguistic environment, and set of values (including Aboriginal tradition116 or Island custom117), must be taken into account.

10 Appropriate to circumstances

Power for a matter should be exercised by a guardian or administrator for an adult in a way that is appropriate to the adult's characteristics and needs.

11 Confidentiality

An adult's right to confidentiality of information about the adult must be recognised and taken into account.

PART 2 HEALTH CARE PRINCIPLE

12 Health care principle

(1) The health care principle means power for a health matter, or special health matter, for an adult should be exercised by a guardian, the adult guardian, the tribunal, or for a matter relating to prescribed special health care, another entity--
(a) in the way least restrictive of the adult's rights; and
(b) only if the exercise of power--
(i) is necessary and appropriate to maintain or promote the adult's health or wellbeing; or
(ii) is, in all the circumstances, in the adult's best interests.
Example of exercising power in the way least restrictive of the adult's rights--
If there is a choice between a more or less intrusive way of meeting an identified need, the less intrusive way should be adopted.

(2) In deciding whether the exercise of a power is appropriate, the guardian, the adult guardian, tribunal or other entity must, to the greatest extent practicable--
(a) seek the adult's views and wishes and take them into account; and
(b) take the information given by the adult's health provider118 into account.

(3) The adult's views and wishes may be expressed--
(a) orally; or
(b) in writing, for example, in an advance health directive; or
(c) in another way, including, for example, by conduct.

(4) The health care principle does not affect any right an adult has to refuse health care.

(5) In deciding whether to consent to special health care for an adult, the tribunal or other entity must, to the greatest extent practicable, seek the views of the following person and take them into account--
(a) a guardian appointed by the tribunal for the adult;
(b) if there is no guardian mentioned in paragraph (a), an attorney for a health matter appointed by the adult;
(c) if there is no guardian or attorney mentioned in paragraph (a) or (b), the statutory health attorney for the adult.

---

[*] LLB (QIT), LLM (Public Law) (QUT); Public Advocate, Queensland
[1]Guardianship and Administration Act 2000 (Qld) ss 7-8; Powers of Attorney Act 1998 (Qld) ss 5-6A.
[2] Guardianship and Administration Act 2000 (Qld) s 66; Powers of Attorney Act 1998 (Qld) ss 62, 63.
[3] Guardianship and Administration Act 2000 (Qld) s 11.
[4] Powers of Attorney Act 1998 (Qld) s 76.
[5] Guardianship and Administration Act 2000 (Qld) sch 1 ss 1-11; Powers of Attorney Act 1998 (Qld) sch 1 ss 1-11.
[6] Guardianship and Administration Act 2000 (Qld) sch 1 s 12; Powers of Attorney Act 1998 (Qld) sch 1 s 12.
[7] This examination followed consideration of an Issues Paper by Ben White and Lindy Willmott, ‘Rethinking Life-sustaining measures: Questions for Queensland’ (2005) Queensland University of Technology.
[8] The terminology of post-coma unresponsive state is now being adopted in Australia, rather than persistent or permanent vegetative state. See for example, National Health and Medical Research Council, ‘Post-Coma Unresponsiveness (Vegetative State): A Clinical Framework for Diagnosis An Information Paper’ (2004) Commonwealth of Australia.
[9] In October 2005, the Attorney-General and Minister for Justice referred the guardianship legislation to the Queensland Law Reform Commission (QLRC) for review. The review is being conducted in two parts:
1. the confidentiality provisions of the guardianship laws
2. Queensland’s guardianship laws more generally.
Reform can be considered in the guardianship review.
[10] Guardianship and Administration Act 2000 (Qld) s 6.
[11] Guardianship and Administration Act 2000 (Qld) s 5.
[12] Guardianship and Administration Act 2000 (Qld) s 79 makes it an offence to carry out health care unless Guardianship and Administration Act 2000 (Qld) or another Act provides for it to be given without consent; consent is given under the Guardianship and Administration Act 2000 (Qld) or another Act; or it is authorized by the Supreme Court of Queensland in its parens patriae jurisdiction. Consent is not required under the Guardianship and Administration Act 2000 (Qld) in limited circumstances: in relation to urgent health care: s 63; in relation to WWLSM in an acute emergency: s 63A; and in relation to minor and uncontroversial health care: s 64. In limited circumstances, treatment without consent is authorized under other legislation including the Mental Health Act 2000 (Qld).
[13] Guardianship and Administration Act 2000 (Qld) s 66.
[14] Guardianship and Administration Act 2000 (Qld) s 66 (1).
[15] Guardianship and Administration Act 2000 (Qld) s 66 (2).
[16] Guardianship and Administration Act 2000 (Qld) s 66 (3).
[17] Guardianship and Administration Act 2000 (Qld) s 66 (4).
[18] Guardianship and Administration Act 2000 (Qld) s 66 (5). Note that the statutory health attorney regime is provided for in the Powers of Attorney Act 1998 (Qld) ss 62, 63.
[19] Powers of Attorney Act 1998 (Qld) s 63: 63 Who is the statutory health attorney

(1) For a health matter, an adult's statutory health attorney is the first, in listed order, of the following people who is readily available and culturally appropriate to exercise power for the matter—
(a) a spouse of the adult if the relationship between the adult and the spouse is close and continuing;
(b) a person who is 18 years or more and who has the care of the adult and is not a paid carer for the adult;
(c) a person who is 18 years or more and who is a close friend or relation of the adult and is not a paid carer for the adult.
(2) If no-one listed in subsection (1) is readily available and culturally appropriate to exercise power for a matter, the adult guardian is the adult's statutory health attorney for the matter.
(3) Without limiting who is a person who has the care of the adult, for this section, a person has the care of an adult if the person--
(a) provides domestic services and support to the adult; or
(b) arranges for the adult to be provided with domestic services and support.
(4) If an adult resides in an institution (for example, a hospital, nursing home, group home, boarding-house or hostel) at which the adult is cared for by another person, the adult--
(a) is not, merely because of this fact, to be regarded as being in the care of the other person; and
(b) remains in the care of the person in whose care the adult was immediately before residing in the institution.

[20A] Guardianship and Administration Act 2000 (Qld) s 42.
[20] Guardianship and Administration Act 2000 (Qld) s 11; Powers of Attorney Act 1998 (Qld) s 76. For the purposes of this article, it is assumed that there is no significant difference between the requirement to ‘apply’ the Principles as opposed to ‘comply with’ them.
[21] Guardianship and Administration Act 2000 (Qld) sch 2, s 5(2); Powers of Attorney Act 1998 (Qld) sch 2 s 5(2). Note also, GMP is GMP in Australia for the medical profession, in accordance with recognized medical standards and practices and recognized ethical standards: Guardianship and Administration Act 2000 (Qld) sch 2, s 5B and Powers of Attorney Act 1998 (Qld) sch 2 s 5B.
[22] Guardianship and Administration Act 2000 (Qld) s 63A(1).
[23] Guardianship and Administration Act 2000 (Qld) s 63A(2).
[24] Guardianship and Administration Act 2000 (Qld) s 63A(4).
[25] Guardianship and Administration Act 2000 (Qld) s 66A. Note also, exercise of power for a health matter will not be effective to give consent if the health provider is aware that the adult objects to the health care, unless the adult has no real understanding of what it involves and why its needed, and it is likely to cause the adult no distress or temporary distress is outweighed by the benefit to the adult: Guardianship and Administration Act 2000 (Qld) s 67. This exception applies to decisions about WWLSM. Note that Guardianship and Administration Act 2000 (Qld) s 67(3), specifically excludes the operation of the exception in s 67(2), where an adult objects, in relation to health care for the removal of tissue for donation and participation in special medical research, experimental health care, or approved clinical research, but not other types of health care.
It is noteworthy that similar to the common law position, under the guardianship regime, an AHD can be made by an adult while competent. Under an AHD, a direction to WWLSM can only operate in limited circumstances: Powers of Attorney Act 1998 (Qld) s 36, s 36(2). Essentially, it can operate only where the adult has an incurable/irreversible terminal condition and is expected to die within one year; where the adult is in a persistent vegetative state; where the adult is permanently unconscious; where the adult’s injury or illness is so severe that there is no reasonable prospect the adult will recover to the extent that LSM will not be required to sustain life: s 36(2)(a). Additionally, for a direction to operate about WW of ANH, the LSM must be contrary to GMP: s 36(2)(b). In all cases, there must be no reasonable prospect that the adult will regain capacity for health matters: s 36(2)(c). These circumstances are narrower recognition of autonomy than the common law allows. Because of amendments to the guardianship regime in 2001 which are discussed in Part IV of this article (and by virtue of which WWLSM became ‘health care’, despite the specific provision in Powers of Attorney Act 1998 (Qld) s 36(2) (b) and Guardianship and Administration Act 2000 (Qld) s 66A [which does not refer to Guardianship and Administration Act 2000 (Qld) s 66 (2)], it now appears that for a direction in an AHD to be effective to WWLSM commencement or continuation of the LSM must be inconsistent with good medical practice as a result of the definition of health care.
[26] Guardianship and Administration Act 2000 (Qld) sch 2, s 5A; Powers of Attorney Act 1998 (Qld) sch 2 s 5A.
[27] Re F (Mental Patient: Sterilisation) [1991] UKHL 1; [1990] 2 AC 1, 72 E; Airedale NHS Trust v. Bland [1992] UKHL 5; [1993] AC 789, 864C; Re A (Children) [2000] Lloyd’s Rep. Med 425, 494. See also, discussion about the history of development of autonomy as a central idea in medical law, for example, D Morgan and K Veitch, ‘Being Ms B:B, Autonomy and the Nature of Legal Regulation’ [2004] Sydney Law Review 6.
[28A] Treatment without consent may leave a health provider liable in criminal and civil law: Sec, Dept of Health & Community Services v JWB (‘Marion’s Case’) [1992] HCA 15; (1992) 106 ALR 385, 392 (Mason CJ, Dawson, Toohey and Gaudron JJ).
[28] Competent patients decide for themselves whether to accept or refuse recommended medical treatment, not their doctors. The right of a competent person to refuse treatment has been recognized in a variety of jurisdictions including the United States (Schloendorff v. Society of New York Hospital 105 NE 92 (NY) 1914); Canada (Nancy B v. Hotel-Dieu de Quebec (1992) 86 DLR (4th) 385); Ciarlariello v. Schactr (1993) 100 DLR (4th) 609 (SCC); Malette v. Schulman (1990) 67 DLR (4th) 321); New Zealand (s 11 Bill of Rights; Re G [1997] 2 NZLR 201; Auckland Area Health Board v. Attorney General [1993] 1 NZLR 235); and the United Kingdom (Re B (Adult refusal of medical treatment) [2002] EWHC 429; [2002] 2 All ER 449; Re C (Adult refusal of medical treatment) [1994] 1 All ER 81; Airedale NHS Trust v. Bland [1992] UKHL 5; [1993] AC 789; Re T (Adult: refusal of medical treatment) [1992] EWCA Civ 18; [1992] 3 WLR 782. In Australia, there has been little judicial confirmation of the common law position. However, it appears to have been implicitly accepted by the High Court in Secretary, Department of Health and Family Services v. JWB and SMB [1992] HCA 15; (1992) 106 ALR 385 (‘Marion’s Case’) 390, 392 (where the majority endorsed the principle of bodily inviolability) and by the Queensland Supreme Court in Re Bridges [2001] Qd R 574. Ambrose J (when declaring that an adult did not have capacity to make decisions about health matters,) appears to have accepted a common law right to refuse treatment.
[29] Airedale NHS Trust v. Bland [1992] UKHL 5; [1993] AC 789. Lord Goff quoted with approval Superintendent of Belchertown State School v Saikerwicz [1977] 370 NE 2d 417, 428 in which the Supreme Court of Massachusetts said: To presume that the incompetent person must always be subjected to what many rational and intelligent persons may decline is to downgrade the status of the incompetent person by placing a lesser value on his intrinsic human worth and vitality.
[30A] The focus of the cases has been on the right to choose between offered treatments and refuse treatment: the common law does not allow a patient to compel a heath provider to provide treatment which the health provider does not consider clinically appropriate, does not serve any therapeutic purpose or is illegal: Auckland Area Health Board v. Attorney-General [1993] 1 NZLR 235, 253-4 (Thomas J); Airedale NHS Trust v. Bland [1992] UKHL 5; [1993] AC 789, 864C (Lord Goff) ; Re J (A Minor) (Child in Care: Medical treatment) [1993] Fam 15; and Burke v General Medical Council [2005] EWCA Civ 1003. See also, L Skene, Law and Medical Practice Rights, Duties, Claims and Defences (LexisNexis Butterworths, 2nd ed, 2004) 86-7; A Hockton, The Law of Consent to Medical Treatment (Sweet & Maxwell, 2002) 15; L Skene, ‘Withholding and withdrawing treatment in South Australia when patients, parents or guardians insist that treatment must be continued’ [2003] AdelLawRw 17; (2003) 24 Adelaide Law Review 161, 167-71. However, a court may declare it unlawful for treatment to be ceased, thus indirectly compelling treatment: Northridge v Central Sydney Area Health Service [2000] NSWSC 1241 (Unreported, O’Keefe J, 17 January 2001).
[30] Re T (Adult: refusal of medical treatment) [1992] EWCA Civ 18; [1992] 3 WLR 782. See also discussion about common law advance directives in Lindy Willmott, Ben White & Michelle Howard, ‘Refusing Advance Refusals: Advance Directives and Life-sustaining Medical Treatment’ [2006] MelbULawRw 7; (2006) 30 Melbourne University Law Review 211, 215-217.
[31] Re F (Mental Patient: Sterilisation) [1991] UKHL 1; [1990] 2 AC 1.
[32] [1992] UKHL 5; [1993] AC 789.
[33] For example[1992] UKHL 5; , [1993] AC 789, 872 Lord Goff referred to the patient’s wishes; 869 Lord Goff, 883-4 Lord Wilkinson-Browne referred to lack of dignity from invasive measures.
[34] [1993] 1 NZLR 235.
[35] [1997] 2 NZLR 201.
[36] [2004] NSWSC 1061.
[37] See, for example, Re MB (Medical Treatment) [1997] 2 FLR 426, 439 Butler-Schloss LJ considered best interests is not limited to best medical interests; Re A (Male Sterilisation) [2001] 1 FLR 549, 555 Butler-Schloss P considered best interests includes medical, emotional and all welfare issues; In re S (Adult Patient: Sterilisation) [2001] Fam 15, 30 Thorpe J considered best interests includes welfare considerations far wider than medical.
[38] Wyatt v Portsmouth Hospital NHS [2005] EWCA Civ 277; [2005] All ER (D) 107 (Oct). This approach has been subsequently endorsed. See for example, An NHS Trust v MB (a child) [2006] EWHC 507 (Fam) (15 March 2006) and Re K (a minor) [2006] EWHC 1007 (Fam) (9 May 2006).
[39] However, Northridge v Central Sydney Area Health Service [2000] NSWSC 1241; (2000) 50 NSWLR 549 involved an application in the parens patriae jurisdiction to compel treatment in circumstances where treating health providers intended to WWLSM.
[40] [2004] NSWSC 1061(Unreported, Howie J, 11 November 2004). For critical comment about this decision, see B White and L Willmott, ‘Futility, Finances and Families: decisions to withdraw life-sustaining medical treatment’ (2004) 13(4) Australian Health Law Bulletin 37; and T Bowen and A Saxton, ‘New developments in the law-withholding and withdrawal of medical treatment’ (2006) 14(5) Australian Health Law Bulletin 57.
[41] Messiha v South East Health [2004] NSWSC 1061(Unreported, Howie J, 11 November 2004) 6.
[42] Airedale NHS Trust v Bland [1992] UKHL 5; [1993] AC 789. Lords Goff and Wilkinson-Browne suggest that parliament should decide the broad issues raised by the case. R (On the Application of Burke) v General Medical Council [2004] EWHC 1879 (Admin) (Unreported, Munby J, 30 July 2004) Munby J considered that although best interests is the test, it is a poor basis for decision-making in this grave and difficult area.
[43] JK Mason, RA McCall Smith and GT Laurie, Law and Medical Ethics (LexisNexis, 6th ed, 2002) 518, 522 refer to the paternalism of best interests as a concept, and the medicalisation of the approach to termination of treatment; Hockton, above ni 30A, 107 suggests that in Bland’s Case, their Lordships generally appear to broadly equate the tests of best interests and the Bolam principle (the latter was established in negligence cases, and is to the effect that a doctor must act in accordance with a competent and responsible body of medical opinion: Bolam v Friern Hospital Management Committee [1957] 1 WLR 582. Cf J Keown, ‘Restoring Moral and Intellectual Shape to the Law After Bland’ (1997) 113 The Law Quarterly Review 481, and ‘Beyond Bland: a critique of the BMA guidance on withdrawing and withholding medical treatment’ (2000) 20 Legal Studies 66 who focuses on problems with ethical principles articulated as relevant, namely sanctity of life, when quality of life appears to have been considered by some of their Lordships as the basis for concluding that Bland had no interests in being kept alive.
[44] Sec, Dept of Health & Community Services v JWB (‘Marion’s Case’) [1992] HCA 15; (1992) 106 ALR 385, 418-23 (High Court of Australia, Brennan J (dissenting)). See also Ian Freckleton and Bebe Loff, ‘Health law and human rights’ in David Kinley (ed), Human Rights in Australian Law (1998) 267, 281.
[45] The text of the Principles in the PAA is in similar terms. However, it includes references to enduring documents and attorneys. The principles in the GAA include an additional sub-section in HCP 12 (5) which is to be applied when consent is given to special health care.
[46] Queensland, Parliamentary Debates, Legislative Assembly, 8 October 1997, 3684 (Denver Beanland, Attorney-General and Minister for Justice).
[47] This principle is contained in the GPs: Guardianship and Administration Act 2000 (Qld) sch 1 s 7(4), Powers of Attorney Act 1998 (Qld) sch 1 s 7(4).
[48] Queensland, Parliamentary Debates, Legislative Assembly, 8 October 1997, 3684, 3690 (Denver Beanland, Attorney-General and Minister for Justice).
[49] Guardianship and Administration Act 2000 (Qld) as passed No 8, 2000: ss 65, 68; schedule 2 ss 6-7, 16.
[50] Queensland, Parliamentary Debates, Legislative Assembly, 11 April 2000, 785 (Matthew Foley, Attorney-General and Minister for Justice).
[51] Queensland, Parliamentary Debates, Legislative Assembly, 17 October 2001, 2908-2910 (Rodney Welford).
[52] Explanatory Notes, Guardianship and Administration and Other Acts Amendment Bill 2001(Qld) 6 state that the amendment acknowledges that health care can be in a person’s best interests, but not promote or maintain health, for example, by not interfering with the natural processes of dying by the futile administration of LSM. Previously, consent could only be given for health care which was to maintain or promote an adult’s health or well-being.
[53] For example see, Queensland, Parliamentary Debates, Legislative Assembly, 6 December 2001, 4330 (Kevin Lingard); 4332-4334 (Ronan Lee); 4334-43350 (Liz Cunningham).
[54] Queensland, Parliamentary Debates, Legislative Assembly, 6 December 2001, 4335-4337 (Rodney Welford).
[55] [2003] QGAAT 13.
[56] [2006] QGAAT 26.
[57] [2006] QGAAT 26, [69-70].
[58] [2006] QGAAT 26, [72-6].
[59] [2006] QGAAT 26, [88-9].
[60] [2006] QGAAT 26, [92-3].
[61] There is a statement that the Principles particularly relevant to WWLSM have been considered in L Willmott and B White, ‘Charting a course through difficult legislative waters: Tribunal decisions on life-sustaining measures’ (2005) 12(1) J Law Med 441; however, GAAT does not provide it’s own rationale for applying only some of the Principles: [2006] QGAAT 26, [68].
[62] GAAT considered that once a matter was referred to the Tribunal for consent, s 66A (which applies to decisions made under s 66(3)-66(5) and which provides that consent to WWLSM can not operate unless the health provider considers commencement or continuation would be inconsistent with GMP) does not apply: [2003] QGAAT 13, [49-52]. With respect, GAATs comments that s 66A does not apply to decisions of the Tribunal seem misplaced, since the Tribunals decision must be made under s 66(3).
[63] [2003] QGAAT 13, [55]. See also B White and L Willmott, ‘Will You Do As I Ask? Compliance with Instructions about Health Care in Queensland’ (2004) 4 (87) Queensland University of Technology Law Journal 77, 82.
[64] [2003] QGAAT 13, [53].
[65] [1993] 1 NZLR 235.
[66] [1997] 2 NZLR 201.
[67] [2003] QGAAT 13, [56-62].
[68] Ibid [62].
[69] Ibid [63-64]. Although the right of the patient to receive ordinary treatment and right to refuse health could be an application of GP 2 and GP 2 in combination with HCP 12(4) respectively, it is not referred to as such an application.
[70] Ibid [67].
[71] Ibid [68].
[72] GAAT had made findings of fact which did not include any reference to MC being a private person, but included other matters which could have supported this application of the law, but which were not referred to: [2003] QGAAT 13, [46].
[73] [2003] QGAAT 13, [68].
[74] DC Pearce and RS Geddes, Statutory Interpretation in Australia (Butterworths, 5th ed, 2001) [4.17- 4.35] explain the syntactical presumptions applying in statutory interpretation, including expressio uniusest exclusio alterius (express reference to one matter indicates that other matters are excluded): [4.26]. Where legislation includes provisions about similar matters in different terms, there is an intention to deal with them differently. Even if this presumption was not considered applicable, an interpretation of the plain words, would seem to support HCP 12(2) as relevant only to HCP 12(1)(b)(i), because it refers to determining whether an exercise of power is appropriate. Despite comments in the Explanatory Notes to the Guardianship and Administration Bill 2001 (Qld), that the adult’s wishes would still be highly relevant to a substitute decision-makers deliberations about best interests because of HCP 12(2), regard would not be had to the Explanatory Notes to provide an interpretation, unless the provision was ambiguous or obscure; or the ordinary meaning was manifestly absurd or unreasonable: Acts Interpretation Act 1954 (Qld) s 14B.
[75] [2003] QGAAT 13, [69].
[76] Ibid [62].
[77] It is acknowledged that the apparent priority given to exercising power in the circumstances, in the adult’s best interests, recognizes that power for a health matter should be exercised in accordance with HCP (1)(b). That is, only if either HCP 12(1)(b)(i) it is necessary and appropriate to maintain or promote the adult’s health or wellbeing; or HCP 12(1)(b)(ii) it is, in all the circumstances, in the adult’s best interests. Reliance on best interests suggests that GAAT considered that consent to WWLSM is not considered health care necessary and appropriate to maintain or promote the adult’s health or well-being, but may be considered in an adult’s best interests. The principle suggests that if it does not fall within (1)(b)(i) or (ii) then it cannot be given. This may have been thought to accord some priority to this principle over others. However, it is argued that this is an inadequate basis for according priority to the principle, since the legislation/principles do not provide for prioritization and GAAT was required to apply the Principles. GAATs possible basis for according priority to the principle that exercise of power should be least restrictive of the adult’s rights, over other principles, is less obvious (despite the Principles requiring exercise power in the way least restrictive of an adult’s rights).
[78] Re MC [2003] QGAAT 13, [70] seems suggestive of this possibility.
[79] Ibid [62-3], [67-9].
[80] Ibid [67].
[81] This seems to accord broadly with the arguments of J Keown, ‘Restoring Moral and Intellectual Shape to the Law after Bland’ (1997) 113 The Law Quarterly Review 481, where he argues that the sanctity of life was overlooked for quality of life interpretations in Bland’s Case. See also, L Skene, ‘The Shiavo and Korp cases: Conceptualising end-of-life decision-making’ (2005) 13 Journal of Law and Medicine 223, 224 where she considers possible alternate constructs in end-of life decision-making applied in the cases which were the subject of the article: these may be summarized broadly as a health law construct (the person is a terminally ill patient with no hope of recovery who is receiving futile treatment) and a disability construct (the person is a person with a disability whose interests must be protected). Skene argues in favour of the health law construct.
[82] In this matter, it is acknowledged that the facts supported a substituted judgment that MC would refuse the treatment (and later one was made), but when the principle was considered this was not discussed. See [2003] QGAAT 13, [63], [68].
[83] [2000] QGAAT 2.
[84] Ibid [79-80] Factually, the adult’s health crisis had passed; antibiotics may or may not be a LSM in the future depending on the circumstances.
[85] GAAT considered that HCP 12(1) was really the same as the common law in respect of WWLSM, since treatment to promote the health and well-being must be read to mean that the health care would be of some benefit to the person, and therefore, in the adult’s best interests: [2000] QGAAT 2, [67-9]. It considered that common law principles must be applicable, and that this seemed to accord broadly with the Report, since it was not intended that the scheme include WWLSM: [2000] QGAAT 2, [50-1]. The common law was explored and applied, including Bland’s Case: [2000] QGAAT 2, [52-7], [60-2].
[86] At this time, consenting to WWLSM was special health care, and it appeared that the HCP was as a matter of strict interpretation not applicable: Re RWG [2000] QGAAT 2, [42-51].
[87] [2000] QGAAT 2, [76].
[88] Ibid [84-8].
[89] Ibid [52-68].
[90] Ibid [76].
[91] Ibid [84].
[92] [2002] QGAAT 1.
[93] Ibid [118-128, 138, 154-8, 163].
[94] Ibid [160].
[95] Ibid [164-5].
[96] Ibid [166].
[97] Ibid [167].
[98] Ibid [168].
[99] Ibid [169-172]. Nursing staff considered TM’s level of alertness indicated that she was not close to dying.
[100] Ibid [164-5].
[101] Ibid [167].
[102] It should be noted that there is no requirement upon the health provider to give a decision-maker a copy of the principles.
[103] See also above n 82 in relation to possible alternate constructs.
[104] It is noted that for adults with certain cultural backgrounds, this may be relevant to a decision about WWLSM.
[105] That is, considerations which do not constitute rights.
[106] That is, considerations which do constitute rights.
[107] Re Bridges [2001] Qd R 574.
[108] It is noted that other confidentiality provisions would protect an adult’s private medical information in circumstances when the decision is made by GAAT or the Adult Guardian: Guardianship and Administration Act 2000 (Qld) s 112, s 249; or by an attorney: Powers of Attorney Act 1998 (Qld) s 74.
[109] [2006] QGAAT 26.
[110] [2003] QGAAT 13.
[111] Ibid.
[112] Ibid [68].
[113] As noted earlier in Part IV B of this article, until 2001, WWLSM was defined as special health care.
[114] Re RWG [200] QGAAT 2, [84].
[115] Re TM [2002] QGAAT 1, [160].
[116] [2003] QGAAT 13.
[117] [2006] QGAAT 26.
[118] Ibid [69-71].
[119] [2003] QGAAT 13, [67]. See also discussion above n 82.
[120] [2002] QGAAT 1, [59], [80], [134-142].
[121] [2003] QGAAT 13, [63-4].
[122] [2002] QGAAT 1.
[123] Ibid [164-5]. Later, it considers the adults right to refuse health care in accordance with HCP 12(4) and makes a substituted judgment about this, but does not appear to consider it relevant to the consideration under HCP 12(1)(a): [167-8].
[124] [2003] QGAAT 13. It is acknowledged that although GAAT did not articulate reasons for doing so, it does not appear to have prioritized amongst the Principles in order to overcome the dilemma discussed in this part.
[125] Guardianship and Administration Act 2000 (Qld) s 11.
[126] Powers of Attorney Act 1998 (Qld) s 76.
[127] White and Willmott, above n 64, 82-3.
[128] Some support for this proposition seems to flow from the second reading speech in respect of the PAA to the effect that because of the principle of substituted judgment which must be applied in decision-making, where possible an attorney should make the decision the adult would have made if able: Queensland, Parliamentary Debates, Legislative Assembly, 8 October 1997, 3684, 3690 (Denver Beanland, Attorney-General and Minister for Justice). However, it must be acknowledged that at the time of these assertions, decisions about WWLSM were not contemplated as discussed in Part IV B of this article.
[129] For example, in Re TM [2002] QGAAT 1, [89-91] there was evidence that the adult had strong views about the medical profession and patient autonomy.
[130] See above n 30A.
[131] Re HG [2006] QGAAT 26, [89].
[132A] See above n 13.
[132] As noted in Part III of this article, the common law has increasingly recognised that a best interests assessment should include wide considerations. Cf L Skene,’The Schiavo and Korp cases: Conceptualising end-of-life decision-making’ (2005) 13 Journal of Law and Medicine 223 who suggests essentially that only medical opinion is relevant where treatment is considered medically futile.
[133] Marion’s Case [1992] HCA 15; (1992) 106 ALR 385.