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Chapter 13 - Advance Directives

22 Jun 2017 - 16:03 | Version 17 |

Contributed by Nick O'Neill and Carmelle Peisah and current to 28 February 2017

13.1 Introduction

As was discussed in Chapter 11, with the development of the concept of patient autonomy and, in particular, the right to refuse medical treatment came the development of the advance directive. This chapter will concentrate on the development of advance directives in Australia.

Currently in Australia, it is becoming part of both State and Commonwealth health policy to encourage and assist people to make advance directives.(1) Advance care planning has been recognized as an important quality of care issue and the promotion of advance care planning has been a priority for the health care sector. This has resulted in major health-wide strategies to encourage communication between health professionals, patients and families about end of life care, to facilitate compassionate and appropriate treatment decisions and fairness and to safeguard both patients and health professionals.(2) In particular, patients with life threatening conditions or increasingly debilitating illnesses are encouraged to express their views about treatment they wish to receive as their physical and mental capacities deteriorate. And further to record those wishes and views in order to use them as the basis for advance care directives and planning. Notably, implementing organisation wide policies and procedures that address the requirements for end-of-life care, including advance care plans, comprise one of the National Safety and Quality Health Service standards introduced by the Australian Commission on Safety and Quality in Health Care.(3)

In regards to the law, there is legislation about a limited form of advance directive in Victoria, Queensland, Western Australia and the Australian Capital Territory. In essence it does no more than provide a statutory right to refuse treatment which is then circumscribed with procedural requirements. However, since this chapter was first published in 2009, South Australia and particularly the Northern Territory have broadened the scope and the effect of advance directives (advance personal plans) made under legislation they have enacted and brought into force in 2014. This chapter describes the scope and effect of the legislation itself. It should be noted that in New South Wales advance care directives have been held to be effective by operation of the common law.(4)

New South Wales and Tasmania have not gone down the path of introducing statutory advance directives and so can rely on the common law development of not only the right to refuse treatment, but also the expectation that appropriately drafted advance directives will be recognised and given effect to.

The refusal of treatment legislation Victoria, Queensland, Western Australia and the Australian Capital Territory states that it does not affect:
  1. a right to refuse treatment under any other law - (Vic and ACT);
  2. the common law recognition of instructions about health care given but not included in an advance health directive - (Qld);
  3. the common law relating to a person's entitlement to make treatment decisions in respect of the person's future treatment - (WA).(5)
It is suggested that these statements preserve the common law. However, since 2014 with the coming into force of the Advance Care Directives Act 2013 (SA) in South Australia and particularly the Advance Personal Planning Act (NT) in the Northern Territory, it is less clear that it is possible to argue that there is no necessary implication that that legislation was intended to replace the common law.

Nevertheless, after dealing with the refusal of treatment, the chapter deals with the requirements for advance directives based on the developing common law.

13.2 What are advance directives?

Advance directives are also known as living wills, advance care directives, advance health directives and advance statements. There is no real distinction between them based on these names, although it could be argued that advance health directives and advance statements are particular, narrower forms of advance directives.

Sometimes the term advance directive is used synonymously with the term advance care plan. However, generally, advance care planning is the process, while an advance directive is the formal documentation of this process involving a competent adult. Advance care planning is an ongoing, dynamic discussion between the patient, family members or important others with key health professionals regarding future treatment, usually at the end of life.

13.2.1 Written advance directives

The Alzheimer's Society in the United Kingdom describes advance directives as written documents intended to be binding refusals of treatment, and that in this form they are often called living wills.(6) This fits in with the tendency in the USA to describe written directives as living wills and to see them as limited to medical treatment at the end of life.(7) The NSW Department of Health defines an advanced care directive as a document that prescribes a person's future preferences for medical treatment in anticipation of a time when they are unable to express those preferences due to illness or injury.(8) In addition to living wills or "instructional directives", which usually document specific choices regarding medical interventions in hypothetical situations in the future, there are several other types of advance directives which are less specific in their documentation, including:
  1. statements of general values or "a values history" to inform later treatment decisions, by ranking certain states as "worse than death" e.g. particular condition or states the person would find unacceptable should these be result of providing life-sustaining treatment;
  2. statements of goals which may provide a bridge between values and wishes; and
  3. statements of specific treatment measures or a "treatment directive" which include medical treatment preferences and limitations. These are usually relevant to an existing illness e.g. use of ventilation in someone with respiratory failure.(9)
The British Medical Association distinguishes six types of advance directives, as follows:
  1. a requesting statement reflecting an individual's aspirations;
  2. a statement of general beliefs and aspects of life which an individual values;
  3. a statement that names another person who should be consulted at the time a decision has to be made;
  4. a clear instruction refusing some or all medical procedures;
  5. a statement which, rather than refusing any particular treatment, specifies a degree of irreversible deterioration after which no life sustaining treatment should be given; or
  6. a combination of the above, including requests, refusals and the nomination of a representative.(10)
In most cases, written advance directives take one of two forms, instructional directives or proxy directives. The United States President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioural Research noted that instruction directives were not necessarily limited to terminal illnesses or to refusal of treatment, but could act as "standing orders" about aspects of the person's care.(11) While written advance directives are usually limited to medical decision-making after the person has lost capacity to make their own decisions, it is possible that they can relate to other kinds of decisions such as those about where the person is to live or who they want to see or other kinds of personal decisions. This is certainly open in relation to directions, conditions, limitations or exclusions that may be given by their appointors to enduring guardians appointed under the _Guardianship Act 1987 (NSW) and the Guardianship and Administration Act 1995 (Tas).(12)

13.2.2 Proxy directives

The other usual kind of written advance directive is the proxy directive where the person chooses whom they want to make substitute health (and other) decisions for them should they lose decision-making capacity. In New South Wales, Tasmania and Western Australia this can be done by appointing an enduring guardian and giving them directions, in the form of or amounting to, an advance directive. This matter is discussed in Chapter 9 and below at 13. 6.(13) In Queensland, the Australian Capital Territory and, since 2015 Victoria, attorneys can be appointed under enduring powers of attorney for personal matters including health matters.(14)

In South Australia, under the Advance Care Directives Act 2013 (SA), these appointees are now called substitute decision-makers if appointed in an advance care plan, or a decision maker in the Northern Territory if appointed in an advance personal plan made under the Advance Personal Planning Act (NT).

13.2.3 Oral advance directives

Perhaps the most common form of advance directive is the advance oral statement. An advance statement is one in which a mentally competent person makes arrangements about their future health care should they become unable to make such arrangements in the future. Sommerville describes them as oral statements which can be of two types and continues:

On the one hand they can be called formal, although unwritten, when they arise in discussion with health, legal or care professionals, are witnessed by someone able to attest to the person's competence and knowledge, and are likely to be noted in some form by the witness. On the other hand, what can be termed conversational statements, ..., rely solely on the memories of friends and are unlikely to be recorded elsewhere. In either case most decisions about relevance and applicability will be made in hospitals rather than courts and without necessarily raising problems for doctors or patients. Arguably, oral statements are and always have been an integral part of medical practice.

Non-resuscitation decisions, for example, often reflect patient's non-written views. Terminal care may entail discussion in advance with patients about their health management if they become confused or unconscious.(15)

An appreciation of these matters appears to be behind the following statement of O'Connor J of the US Supreme Court in Cruzan v Director, Missouri Department of Health when she noted that the Court did not have to decide in that case whether a State must give effect to the decisions of a surrogate decision-maker but, nevertheless, continued:

In my view such a duty may be constitutionally required to protect the patient's liberty interest in refusing treatment. Few individuals provide explicit oral or written instructions regarding their intent to refuse medical treatment should they become incompetent. States which decline to consider any evidence other than such instructions may frequently fail to honour a patient's intent.(16)

13.2.4 What are NOT advance care directives?

As part of the above process to encourage discussions between patients and doctors about end of life care, there has been a push in public health settings for doctors to complete acute Resuscitation Orders or Plans. A Resuscitation Plan is a medically initiated, medically authorised order to use or withhold resuscitation measures which also documents other aspects of treatment relevant at end of life.(17) Doctors prescribing 'Resuscitation Plans', hold responsibility for reaching those decisions,(18) and sign such forms, after consultation with patients, who are also encouraged to sign these forms if they are competent. Where the patient does not have decision-making capacity, a consensus building approach to end-of-life decision-making that considers the patient's best interests as paramount is recommended and a substitute decision maker - usually the person responsible - will sign the form.

13.3 Arguments for and against advance directives: barriers and enablers

While advance directives have been discussed, and various kinds have come into existence in the second half of the 20th century, their popularity has only begun to increase in Australia in the 21st century. In the United States, after the Patient Self Determination Act was passed in 1990, and came into effect in 1991, a plethora of studies emerged which described the individuals executing directives and the disease processes involved, demonstrating that while advance care directives were considered important by the ill and healthy alike, few were actually executed.(19) Moreover, advance directives often don't reach the relevant people or medical records, and amongst those that do, compliance of health care professionals with advance care directives has often been poor.(20) This led to the concept of "the failure of the living will."(21)(22) By the beginning of the 21st century, despite the huge push for living wills in the United States with legislatures, courts, administrative agencies and professional associations, only 18-20% of people had living wills.(23)

Similarly, only recently in Australia, Cheang et al found a prevalence of zero advance care directives in a single cross-sectional analysis of 100 consecutive elderly inpatients in a tertiary referral hospital, while demonstrating feasibility and acceptability of advance care planning in the same population.(24) As there clearly is an imperative to encourage advance care planning and the documentation of such, this process continues to evolve as will be discussed here.

Advance directives, whether written, formal verbal or conversational, give people the dignity of making their own decisions. Most people like the idea of making arrangements so that they can die with greater dignity and autonomy of choice than they otherwise would if life sustaining treatment was continued until the medical decision was made that further treatment was futile. Advance directives have many advantages, not the least of which involves a reflective discussion in a non-crisis situation, which can prepare all involved and can diminish subsequent guilt and conflict over later decisions, and which can offer a sense of control for people in the dying process.(25)

Decision-making at the end of life is an activity often overlaid with high emotion. Accordingly, it often provides a focal point for conflict within and between patients, families and treating staff.(26) The significant variation in the way health care professionals approach situations involving the use of life-sustaining treatment has resulted in accusations of over-zealous treatment on the one hand, and neglect on the other.(27)

While the making of advance directives may address some of these issues, there are a number of barriers to their completion emanating from patients and staff alike. These include patient uncertainty about how to express or document preferences, procrastination, apathy, death anxiety, denial or discomfort with the topic, fear of irrevocability, or the belief that the family should decide or would be upset by such discussions.(28) Clearly, some people just don't want to talk about death and dying. However, if they do, staff need to be ready and receptive, if not to actually initiate discussions. This leads to a number of staff-related barriers to advance care planning and advance directive completion, including time constraints and compensation concerns, lack of trust in the process and general confusion about the term advance care planning, poor level of knowledge and skills, and reluctance of health care professionals to discuss or initiate conversations or to discuss end of life issues.(29) Some of these issues have since been addressed with clinical practice guidelines regarding end of life discussions;(30) however these focus on the advanced stages of life-limiting illness. Notably, critics of advance care directives suggest that they, of themselves, don't improve communication. They cite short, one sided, monologues of doctors of 3.9 to 5.6 minutes in prompting advance directives as evidence of such.(31)

Furthermore, while proxy decision-making in relation to advance care planning can offer a viable alternative for those who choose to defer to others or lack capacity, it doesn't overcome the epistemic problem of imagining future scenarios (capacity to imagine the person with different abilities, needs and preferences in radically different circumstances).(32)

Both "substituted judgment" and "best interest" decisions have their problems. Studies have shown that proxy decision makers are often inaccurate in approximating the wishes of the person (substituted judgment), and in using a best interest standard to make decisions on behalf of another dismisses the preferences of the formerly competent person.(33) Brudney puts the ethical arguments against choosing for another with proxy decision making in this context, namely:
  1. their role is often to guess, in the absence of directions (which represent prior exercise of will), the person's hypothetical choice if they were competent ("what would they want done)";
  2. the conceptual mistake that autonomy is equal to self-determination;
  3. the difference between people's desires (wanting) and their actual choice and actions ;
  4. hypothetical consent by others is not equal to actual consent or will;
  5. authenticity and coherence with previous choice ("my way") are not always equal to a person's best interests;
  6. when authenticity is based on false beliefs and poor reasoning it might be better to accede to best interests; and
  7. in the absence of indication of will, proxy decision making neither supports self-determination nor autonomy.(34)
Advance directives rely on the concept of patient autonomy - the authority of the former competent self to govern the welfare of their later, non-competent selves.(35) Critics of advance directives have highlighted metaphysical (change in personal identity through physical or mental changes) and epistemic constraints on projecting decisions to future states of ourselves.(36) Simply put, we know that preferences are often not stable over time.(37)

Detailed instructional directives are the most controversial due to concerns that people may underestimate their future desire for medical treatment in the face of death, or be unable to predict every potential condition and circumstance.(38) In countries such as the Netherlands where legislation regarding instructional directives has been in place for over ten years, the use of instructional directives has engendered several complex ethical problems when physicians try to balance respect for the wishes and opinions of the formerly competent person against the respect that is equally owed the now incompetent person.(39) Degrazia has argued that people sometimes cannot grasp in detail the circumstances in which advance directives will apply and goes on to argue that there can be major changes in a person's values and preferences between when they complete their directive and when it comes into effect.(40) This led Degrazia to argue that the pre-dementia person and the same person with dementia were literally two different people and that any advance directive made by the pre-dementia person was effectively directed to someone else.(41) If the directive is one by which a proxy is chosen, this can result in the proxy projecting their own values into various possible future circumstances when they have to make decisions for the person making the advance directive.(42)

Healthy patients do not make the same choices as sick ones.(43) It is known that patients suffering from chronic diseases gradually shift their values and change their priorities in life, a phenomenon known as response shift, resulting in a so called "disability paradox" - patients often overestimate the emotional impact that chronic illnesses and disability will have on their lives.(44) The disability paradox" is also seen among hospice patients who value preservation of quality of life despite physical ailments and psychosocial concerns.(45)

Ryan makes an argument that people are likely to under-estimate their desire to have medical interventions when they become ill because they are very poor at determining their attitude to treatment for some hypothetical future terminal illness and very frequently grossly under-estimate their future desire to go on living.(46) A study of patients receiving dialysis showed that strictly following all advance directives may not truly reflect patients' preferences and recommended that to improve advance directives, doctors should specifically ask patients how strictly they want their advance directives followed.(47) Cancer patients and healthy persons widely disregard instructions laid down in advance directives and consider them less binding than physicians and nursing staff.(48) Another study which involved a review of the decisions actually made by the advance directive maker or their proxy or surrogate decision-maker showed that, when they made decisions inconsistent with the advance directive, they favoured treatment that had been rejected in the advance directive.(49) Yet another study suggested that greater subtlety was needed in advance directives, because when faced with a number of scenarios involving cognitive versus physical impairment, no chance of recovery against a slight chance of recovery or improvement and the presence of pain against no pain, the preferences in relation to life-sustaining treatment by elderly adults changed.(50)

It is also important to note that not all patients prioritize autonomy. Some wish to delegate their decisions to physicians while others do not wish to discuss their preferences at all and yet others adopt a one-day-at-a time perspective. Some still prefer that their loved ones or physicians have complete leeway to override their previously expressed wishes and some are influenced by ethno-culturally based beliefs about who should make such decisions and the consequences of discussing future possible illnesses.(51)

Importantly, Crugel et al have argued that the original Beauchamp and Childless criteria of autonomy, beneficence and non-maleficence have been used at times by overstretched and poorly resourced health systems to justify poor care and neglect.(52) Some argue that the expanded use of advance directives can produce unintended results. Sometimes "active treatment" is palliative. Sometime patients might inadvertently refuse active treatments such as antidepressants, antipsychotics or antibiotics which might have alleviated suffering putting the advanced directive in conflict with good clinical care. In this way, misapplied advance directives can cause patients to suffer a: "lengthy, painful degrading and bed- ridden existence" because withholding treatment does not always shorten life.(53) Biegler and others cite the example of a patient with HIV who signs a directive refusing resuscitation or admission to an intensive care unit. The patient has a life-threatening allergic reaction to a drug early in the course of the disease, when the prognosis suggests many good years of life:

If the patient did not intend the advance directive to apply in this circumstance, then to allow this patient to die would be to fail to respect his or her autonomy.(54)

Treloar has outlined a number of principles to guide the practitioner in such circumstances:
  1. Was the advance directive made at a time of mental capacity?
  2. Did the advance directive specifically envisage this situation?
  3. Did the advance directive envisage death (if this is likely to occur) as an acceptable result of the refusal?
  4. Did the advance directive envisage prolonged suffering (if this is likely to occur) as a result of refusal of treatment.
  5. Will the proposed treatments be of benefit to the patient and reduce suffering?
  6. Does the distress of administering the treatment outweigh any gains that may benefit from it?(55)
The use of advance directives in anticipation of developing dementia has been seen as particularly problematic.(56)(57) Many people who previously would have preferred death to dementia because of the fear of dementia become happy to live and express a desire for treatment when demented. Importantly, studies that have explored the perspective of the patient have not supported the widespread misassumption that dementia is a state of dreadful suffering.(58)The case of "Margo" has been used as an exemplar of such a situation and thus a focus for debate.(59)

Margo issued an advance directive before she developed dementia which prohibited the use of any medical procedures, whether invasive or not, aimed at prolonging her life while in a demented state. When severely demented she contracted pneumonia and needed antibiotics in order to survive. However, at this stage Margo was "pleasurably demented". She thoroughly enjoyed basking in the sun, eating peanut butter and jelly sandwiches randomly thumbing through books and painting circles on paper.(60) The issue under debate has been whether or not Margo's current pleasurable positive "experiential interests" were trumped by the authority of her previous autonomous choices. The "harm argument" suggests that acting on an advance directive in such circumstances would harm the severely but "pleasurably demented" Margo.(61) A proffered solution to this debate has been to insist on an extremely rigorous standard of informed consent for advance directives which insists that the issuer must have demonstrated that he or she realized that dementia was a progressive disease differing from person to person, and to consider the course of dementia and what life might be like at the various stages of dementia and tailor the approach to care according to the stage.(62) As an alternative to what has been described as an overly rigorous standard which "threatens to transform the consent process into an exercise in physician paternalism", Harvey has suggested employing a short values history and engaging the patient at the earliest stages of dementia in a series of discussions about their long-term care.(63)

The enforcement of advance care directives clearly poses a number of ethical and legal challenges to health care professionals, as was suggested by the 2006 position statement of the Australian Medical Association (AMA).(64) As a consequence it recommended that:

[A]ll States and Territories enact legislation that establishes advance directives as legally enforceable, whilst ensuring that the same legislation provides statutory protection for doctors who comply with an [advance directive], or who do not comply if they have reasonable grounds to believe it is inconsistent with good medical practice or advances in medical science, thereby preserving doctors' clinical judgment and discretion.(65)

Willmott and others put the matter into its full context when they noted that:

The presumption when dealing with a valid advance directive refusing life-sustaining medical treatment must be that such a directive is binding on health professionals. The right to self-determination or autonomy requires that the wishes of a competent adult be respected and that treatment not be given contrary to that directive. However, it is also appropriate for the law to recognise that there are circumstances in which a health professional should be excused from following an advance directive. The state's interest in the preservation of life reasonably requires that a directive be disregarded, for example, in cases where the directive was based on a misunderstanding of the existence of alternative treatments, or where circumstances have changed significantly since the directive was completed and the adult now has different views.(66)

The extent to which doctors can use these discretionary exceptions to the enforcement of advance care directives has been called to question. Parker, Stewart, Willmott and Cartwright criticised the AMA for its approach to advance care planning and advance care directives and concluded with the following:

The AMA should be congratulated for engaging in the discussion of [advance care planning]. Australia needs to continue that discussion. The addition of the AMA's voice will strengthen the call for a uniform legislative scheme. Nevertheless, the AMA has failed to take the rights of patients to refuse treatment in advance seriously enough. Health professionals do not and should not have the right to ignore their patients' competent and clearly expressed wishes, merely because they feel uncomfortable with the choices that their patients make. It is a fundamental pillar of the doctor/patient relationship that it is the patient who ultimately holds the power to consent to or refuse treatment. Patients will not always be wise or intelligent, but competent patients always have the last say over what happens to their bodies.

The AMA's suggestion of a national legislative regime establishing [advance directives] as legally enforceable is to be commended, but its recommendations for discretionary exceptions are inconsistent with their established legal enforceability. Doctors should therefore be concerned by the advice provided by the position statement. If our analysis is accurate, doctors who use their discretion against the wishes of the patient, beyond those exceptions with which we have agreed, may well be relinquishing the protection which the existing statutes provide.(67)

This leads on to one of the major barriers to the execution and upholding of advance care directives, namely, doctors' knowledge of the law on withholding and withdrawing life-sustaining medical treatment. Cartwright et al have stated:

A high level of knowledge of the law is essential to ensure that patients' wishes and decisions, expressed through Advance Care Planning, are respected to the maximum extent possible within the law, thereby according with the principles and philosophy of palliative care. It is also essential to protect health professionals from legal action resulting from unauthorised provision or cessation of treatment.(68)

Yet there are significant knowledge gaps among doctors about the relevant law in this area. White et al, who have led the research on this issue in Australia, have stated:

Significant consequences for patients can flow from a failure to know and comply with the law. Life-sustaining treatment may be unlawfully withheld or withdrawn; for example, where the purported decision-maker lacks legal authority. For patients, the outcome of such decisions is that, at least as a matter of law, their lives are being ended wrongly. Conversely, life-sustaining treatment may be unlawfully provided; for example, despite a lawful refusal of treatment through an advance directive or by a substitute decision-maker. This may infringe a patient's legal rights, including their right to bodily integrity, and cause patients to survive with poor quality of life, which they had sought to avoid.(69)

13.4 Early attempts at statutory advance directives in Australia

The first attempt at a statutory advance directive in Australia was made in South Australia in the form of the Natural Death Act 1983 (SA). It has been repealed and replaced by the Consent to Medical Treatment and Palliative Care Act 1995 (SA), which, in turn, has been amended in order to operate consistently with the Advance Care Directives Act 2013 (SA). The Natural Death Act 1988 (NT) which was essentially identical to the Natural Death Act 1983 (SA). Those Acts created statutory rights to refuse medical treatment. The Natural Death Act (NT) has now itself been repealed and directions made under it are treated as advance personal plans that contain advance consent decisions under the Advance Personal Planning Act (NT). That Act will be dealt with at 13.5.2.

13.4.1 Victoria

Victoria made the next move towards a statutory advance directive commencing with an inquiry by the Social Development Committee of the Victorian Parliament. In December 1985 the Committee was given terms of reference to seek public submissions and to report to Parliament on whether it was desirable or practicable for the Government to take legislative or other action establishing a right to die and on other related matters. The Committee made its first report in March 1986 and its second and final report in April 1987.(70) The Committee recommended that it was neither desirable nor practicable for legislative action to be taken to establish a right to die, but it recommended legislative action to clarify and protect the existing common law right to refuse medical treatment. It made a range of other related recommendations.(71)

This in turn led to the introduction of the Medical Treatment Bill into the Victorian Parliament in 1987 and a modified version of that bill as the Medical Treatment Bill (No.2) in March 1988.(72) That Bill was opposed by the Liberal and National Parties, then in opposition, on a range of grounds including that the existing common law rights were sufficient to protect the rights of patients and medical practitioners, if coupled with a suitable educational program and that it was a passive euthanasia Bill.(73) The "thin end of the wedge" argument leading to active euthanasia was put and reference was made Nazi Germany's extermination policies.(74)

These claims were made despite the statement made by the then Catholic Archbishop of Melbourne, Sir Frank Little in support of the Bill. He said:

In particular I am advised that the legislation is consistent with the church's constant affirmation that one may not impose on anyone the obligation to have recourse to medical treatment which carries a risk or is burdensome, even if readily available. Such a refusal "is not the equivalent of suicide; on the contrary, it should be considered as an acceptance of the human condition, or a wish to avoid the application of a medical procedure disproportionate to the results to be expected, or a desire not to impose excessive expense on the family or the community" - Declaration of the Congregation of the Doctrine of the Faith on Euthanasia, 1980.(75)

The legislation was enacted as the Medical Treatment Act 1988 (Vic). Its current operation and relationship with the Powers of Attorney Act 2014 (Vic) is described later in this chapter at 13.5.(76)

13.4.2 Northern Territory

The next piece of legislation came from the Northern Territory, the Natural Death Act 1988 (NT). It was introduced by the Country Liberal Party Government and supported by the Labor opposition and all members of the Legislative Assembly who spoke in the debate on the Bill.(77) Apparently it attracted little public debate in the Territory at the time.(78) As has been noted at 13. 4 above, the Natural Death Act (NT) has now been repealed and directions made under it are treated as advance personal plans that contain advance consent decisions under the Advance Personal Planning Act (NT). That Act will be dealt with at 13.5.2. The current legislation in relation to advance directives in the Territory is described later in this chapter at 13.5.2.

13.4.3 South Australia

In South Australia the House of Assembly established a Select Committee into the Law and Practice Relating to Death and Dying in 1990. The Select Committee made three reports to parliament. In May 1992 its second report and a draft Bill were tabled. In November 1992 the Committee's final report was tabled incorporating responses to the draft Bill. A Consent to Medical Treatment and Palliative Care Bill was introduced to the parliament and enacted by the House of Assembly with an overwhelming majority on a conscience vote. The Bill was not passed by the Legislative Council before an election was called in late 1993.(79) The legislation was reintroduced into the parliament after the election and enacted as the Consent to Medical Treatment and Palliative Care Act 1995 (SA).

The 1994 second reading speech for the Bill noted that the Select Committee "found virtually no support in the health professions, among theologians, ethicists and carers, or indeed the wider community, for highly invasive procedures to keep the patient alive, come what may and at any cost to human dignity". The speech also noted that the Select Committee firmly rejected the proposition that the law should be changed to allow medical assistance in dying or "voluntary euthanasia". The fundamental principle underlying the Bill was patient autonomy.(80)

The legislation was enacted on a conscience vote after another open debate. That legislation, and the Advance Directives Act 2013 (SA), which sets out a statutory scheme for the making and giving effect to advance care directives is described later in this chapter at 13.5.3.

13.4.4 Australian Capital Territory

In the Australian Capital Territory a Medical Treatment Bill was introduced into the House of Assembly 1994 as a result of a recommendation of the Assembly's Select Committee on Euthanasia.(81) Although the legislation was introduced into the Assembly as a private member's bill, it was supported by the Government, while the Liberal Party opposition allowed a conscience vote on it. The Bill provided mechanisms for adults with capacity to be able to make it clear that they did not wish to have intensive interventional treatment and it provided that doctors and other health professionals who obeyed those instructions and gave effect to the stated wishes of the person would not face legal action.(82)

Because the member proposing the legislation was a strong supporter of legislation allowing active euthanasia, his Bill was criticized as allowing euthanasia by stealth, something that it did not do.(83) The Bill was also criticized on the grounds that there was no ground swell of opinion in favour of it and for allowing oral as well as written directions to be given.(84) Concerns were also raised about the medical powers of attorney which allowed the attorney to request the withholding or withdrawal of medical treatment from the person who made the power of attorney.

The legislation was enacted with overwhelming support after a substantial debate as the Medical Treatment Act 1994 (ACT). That Act was replaced by the Medical Treatment (Health Directions) Act 2006 (ACT) which was introduced as a rewrite of the 1994 Act consequential upon the enactment of the Powers of Attorney Act 2006 (ACT) which provided for the appointment of enduring attorneys for health care matters.(85) It was agreed to without a division.(86) The 2006 Act is described later in this chapter at 13.5.4.

13.4.5 Queensland

Statutory advance directives, known as advance health directives, were introduced into Queensland in 1998 as a result of the enactment and coming into force of the Powers of Attorney Act 1998 (Qld). Their introduction was recommended by the Queensland Law Reform Commission, but in the context of being carried out by an attorney acting under an enduring power of attorney for health care.(87) The _Powers of Attorney Act 1998 (Qld) provides for them as "stand alone" advance health directives but people are encouraged to appoint an attorney for personal matters as well under the Act.(88) Advance health directives and their relationship with powers of attorney for personal matters are described later in this chapter at 13.5.5. Even though some of the amendments to the legislation were hard fought, because it was introduced by the National-Liberal coalition Government, there was little criticism of the main thrusts of the legislation. The Labor Opposition's major criticisms were about the process of reform being too slow and the provisions in the Bill being too little too late.(89)

13.4.6 Western Australia

In 2006 the Western Australian Government introduced legislation to amend the Guardianship and Administration Act 1990 (WA) to provide for advance health directives.(90) The legislation followed, at considerable distance, the 1991 report of the Law Reform Commission of Western Australia, "Medical Treatment for the Dying". That report suggested that under Western Australian law, "there is no means by which people can give legally binding directions as to withdrawing or withholding treatment should they become incompetent, though as a matter of principle if a patient has expressed clear wishes before becoming in competent those wishes should be respected".(91) The Commission considered the fears of doctors that they might be prosecuted if they withdrew or withheld treatment at the request of competent patients were more apparent than real, but thought the case for legislation to clarify the rights of patients was strong. The Commission recommended an approach closely following the Medical Treatment Act 1988 (Vic).(92)

In May 2005 a discussion paper "Medical Treatment for the Dying" was released and attracted considerable interest and comment. A draft bill was circulated and its overall approach was well supported.(93) Nevertheless, that bill was replaced by the Acts Amendment (Consent to Medical Treatment) Bill 2006 (WA). That Bill was the subject of debate over an 18 month period during which it was noted a number of times that the common law recognised advance directives which raised the question of the need for Part 9B of the Bill headed "Advance health directives".(94) The Bill was enacted and assented to in 2008. Some, but not all of it, came into force 15 February 2010. Those amendments it makes to the Guardianship and Administration Act 1990 (WA) relevant to advance health directives are described later in this chapter at 13.5.6.

13.5 Statutory advance directives/ right to refuse treatment in Australia

This section of the chapter deals with the narrow statutory forms of advance directive that have been introduced into Victoria, Western Australia, the Australian Capital Territory and the Northern Territory as well as the broader forms of legislation now in force in Queensland, South Australia and particularly the Northern Territory. Advance directives made under the common law in Australia are discussed in the next section of the chapter. The giving of directions and the imposing of conditions, limitations or exclusions in appointments of enduring guardianship as a form of advance directive is discussed further in Chapter 9 dealing with enduring guardianship.

13.5.1 Victoria - Medical Treatment Act 1988

What the Act originally established was no more than a very limited statutory right to refuse treatment.(95) Under it, a patient may refuse either medical treatment generally or medical treatment of a particular kind, but only for a current condition. Both a doctor and another person have to be satisfied, presumably by the patient, that the patient has expressed, again presumably either verbally or in writing or indicated through some other means of communication, that they refuse the treatment, that this is being done voluntarily and without inducement or coercion when the patient is of sound mind and has reached 18 years of age. They also have to be satisfied that the patient has been informed of the nature of their condition sufficiently to make that decision and that the patient appears to understand that information. If so satisfied, the doctor and the other person may then witness a refusal of treatment certificate which operates as evidence that the patient has refused medical treatment.(96)

In 1990 the Act was amended. It now allows attorneys appointed by way of an enduring power of attorney (medical treatment), called "agents" in the Act, or guardians appointed by VCAT and authorised by it to make decisions about medical treatment, to refuse medical treatment generally or particular treatment in relation to a patient they were the attorney or guardian for.(97) Again, if the attorney or guardian refuse consent to proposed medical, both a doctor and another person have to be satisfied that the attorney or guardian has been informed of the nature of the condition sufficiently to make that decision and that they appear to understand that information.(98) However, the attorney or guardian may refuse medical treatment on behalf of the patient only if the medical treatment would cause unreasonable distress to the patient or if there are reasonable grounds for believing that the patient, if competent, and after giving serious consideration to their health and well-being, would consider the medical treatment is unwarranted.(99) Note that the attorney or guardian must apply substituted judgment in this matter. They cannot use their own discretion, but must come to the conclusion, on objectively reasonable grounds, that the patient would have considered the medical treatment unwarranted.(100) When they make a refusal, they must complete a refusal of treatment form.(101)

The 1990 amendments also gave what is now the Guardianship List of VCAT jurisdiction to suspend or revoke an enduring power of attorney (medical treatment) and to make consequential orders.(102) VCAT may suspend the power for a period if it is satisfied that the refusal of the treatment was not in the patient's best interests. It may revoke the power if it is satisfied that it is not in the best interests of the patient for the attorney to continue to exercise the power of attorney (medical treatment).(103) Any refusal of treatment certificate made by an attorney or a guardian whose appointment is revoked is also revoked, immediately upon that revocation.(104)

Hospitals and nursing homes are required to take reasonable steps to ensure that copies of any refusal of treatment certificates are placed on the patient's record and given to the chief executive officer of the hospital or home and to the principal registrar of VCAT.(105)

A doctor who treats a person contrary to a refusal of treatment certificate commits an offence of criminal trespass, but doctors or persons acting under their direction - most commonly nurses - who refuse treatment in reliance on a certificate are protected against disciplinary, civil or criminal charges for doing so.(106)

Under the Act a patient cannot refuse or be refused palliative care namely, reasonable medical procedures for the relief of pain, suffering and discomfort or reasonable provision of food and water.(107) However, Morris J has held that providing food and water by artificial means is medical treatment not palliative care. In his opinion the intent of parliament in excluding the provision of food and water from the concept of medical treatment was to ensure that a dying person would have food and water available for oral consumption, if the person wished to consume such food or water.(108)

There are provisions in the Act for the cancellation of refusal of treatment certificates and for the consequences arising from such cancellations.(109)

The Act has been criticized for its failure to uphold the right to self-determination in Article 1 of both the International Covenant on Civil and Political Rights and the International Covenant on Economic, Social and Cultural Rights and to give sufficient weight to the dignity of the patient, and for a range of other defects. The need for a mechanism to provide for the recognition of advance directives rather than the present limited statutory right to refuse treatment has also been raised.(110)

13.5.2 Northern Territory - Advance Personal Planning Act

As a result of the enactment and coming into force of the Advance Personal Planning Act (NT) in 2013 and the Guardianship of Adults Act (NT) in July 2016, the Northern Territory now has a modern guardianship system which is, at once, similar to but different from the system that exists in the States and the Australian Capital Territory.

13.5.2.1 Kinds of advance personal plans in the Northern Territory

Instead of having advance directives, enduring powers of attorney and appointments of enduring guardians, these three documents which either commence or continue to operate after a person has lost the capacity to make the decisions covered by those documents, have been incorporated into one document in the Northern Territory and called an advance personal plan.

How an advance personal plan operates to appoint a person to make decisions in relation to financial matters as would an attorney under an enduring power of attorney (for financial matters), and called a decision maker (for financial matters) in the Northern Territory, is set out in Chapter 10 generally.

How an advance personal plan operates to appoint a person to make decisions in relation to personal matters as would an enduring guardian or an attorney under an enduring power of attorney (for personal matters), and called a decision maker (for personal matters) in the Northern Territory, is set out in Chapter 9.4 and Chapter 9 generally.

However, in the Northern Territory, an advance personal plan can operate in the same way as what is termed an advance care directive in the other States and the Australian Capital Territory, whether or not the maker of the plan has appointed a decision maker for personal matters in the plan. The maker may decide to make either, or both, advance care decisions and advance care statements in the advance personal plan; and go no further. However a maker may also appoint a decision maker to make decisions in relation to personal matters, including helping to give effect to the maker's advance consent decisions or advance care statements. Such a decision maker may also be given authority to make decisions in relation to the maker's financial matters.

13.5.2.2 The tests for capacity to give an advance personal plan

In the Northern Territory an adult person must have what is called "planning capacity" in order to make an advance personal plan. A person has planning capacity if they have decision-making capacity for making an advance personal plan and does not have an (adult) guardian appointed for them.(111) As is immediately apparent, this is a rather circular definition. However the Advance Personal Planning Act (NT) has a test for decision-making capacity, which is a restatement of the established common law test for capacity. It provides that a person has decision-making capacity for a matter if they have capacity to:
  1. understand and retain information about the matter; and
  2. weigh the information in order to make a decision about the matter; and
  3. communicate that decision in some way.(112)
The Act also points out that an adult is presumed to have decision-making capacity for a matter until the contrary is shown.(113) Consequently it is only when a person cannot do the things set out in the last paragraph in relation to a matter that it can be said that they do not have decision-making capacity to make a decision in relation to that matter.

For a general consideration of capacity to make documents see, Chapter 9.3.2.

13.5.2.3 Who may be appointed as a decision maker?

Where a maker of an advance personal plan makes wishes to appoint a decision maker to help give effect to their advance consent decisions or advance care statements, they could limit the authority of the decision maker to just those matters. However, in many cases it would be appropriate for the maker to give the decision maker authority to make decisions in relation to a wider range of personal matters, including at least health care and health care action.(114)

While a maker of an advance personal plan limited as in the last paragraph appoints a decision maker, they may appoint a person who is at least 18 years of age, a licensed trustee company, the Public Trustee or the Public Guardian.(115) However, we suggest in these cases that the maker appoints either a trusted family member or friend as their decision maker and only in the absence of such a person, the Public Guardian.

When an adult person makes an advance personal plan, they may set out in the plan advance consent decisions. These are decisions binding on health care providers as they give advance consent to health care that the maker wishes to receive or refuse in the future when the appropriate circumstances arise and they no longer have the capacity to do so.

A maker may also set out in their plan advance care statements. In these statements the maker sets out their views, wishes and beliefs as the basis on which they want anyone to act if they make decisions on their behalf. While the views, wishes and beliefs may be about all or any aspect of the maker's care and welfare, including health care, they can also be about the maker's property and financial affairs.(116) However, in the context of this chapter, we will be concentrating on advance care statements about health care and health care action.

We note however that the matters set out in the last paragraph paraphrasing s. 8 of the Advance Personal Planning Act (NT) are consistent with the decision-making principles set out in the Act and give precedence to the views of the maker of the plan whether those views were in the form of an advance care statement made in the plan or subsequently. Chapter 9.4.6 deals with these issues in relation to the obligations of a decision maker for personal matters appointed under an advance personal plan while Chapter 10.6.1.7 deals with the issues relation to the obligations of a decision maker for financial matters appointed under an advance personal plan.

It is important to note however that, consistent with a fundamental policy of the Act, any decision maker appointed in an advance personal plan may exercise the authority given to them in relation to a matter only when the maker of the plan has impaired decision-making capacity in relation to that matter.(117)

Also, in addition to their obligation to exercise their decision maker's authority not only in accordance with s. 8 of the Act but also in accordance with the decision-making principles set out in s. 22 if the Act, decision makers appointed in advance personal plans must:
1. comply with:
(a) any restrictions, requirements or directions that are in the advance personal plan;(118) and
(b) any order made by NTCAT;(119) and
(c) the provisions of this Act; and
2. cooperate with any other agents for the maker to enable them all to properly exercise their authority; and
3. act honestly and with care, skill and diligence.(120)

Also, if two or more decision makers are appointed to exercise their authority for a matter jointly, they must exercise their authority unanimously. If those decision makers are unable to reach a unanimous decision, they may seek an order from NTCAT in an effort to resolve their differences.(121)

13.5.2.5 The broad meaning of "health care" and "health care action" under the Act

Health care is very broadly defined in the Act to mean health care of any kind that is part of a health service defined in the s. 5 of the Health Practitioner Regulation National Law.(122) Health care action means commencing, continuing, withholding or withdrawing health care for the adult.(123)

13.5.2.6 The scope of decisions about health care action

The scope of consent decisions about health care action whether they be advance consent decisions made in an advance personal plan or made by a decision maker is very wide. Such decisions may be made:
  1. in relation to health care to be provided in a particular instance or a course of health care to be provided over a period of time; and
  2. about one or more particular health care actions or generally about all health care action; and
  3. so as to apply;
    1. in all circumstances; or
    2. only in stated circumstances; or
    3. in all circumstances except in stated circumstances.(124)
The Advance Personal Planning Act (NT) also provides that an advance consent decision has effect for all purposes as if that advance decision had been made as a current decision by the adult at the time it was proposed that the health care action be carried out. And further, as if at that time, the person had full legal capacity and was fully informed about the health care action, when in fact they were not because they lacked decision-making capacity for the proposed treatment.(125)

However, same section of the Act also supplies the mechanism for dealing with advance consent decisions that are either seriously inappropriate in themselves or are seriously inappropriate for other reasons that may not have been appreciated by the maker when they made the advance consent decision. NTCAT may order that the advance consent decision be disregarded, but only if it is satisfied that:
  1. there is no reasonable possibility that the person would have intended the advance consent decision to apply in the circumstances; or
  2. taking health care action in reliance on the advance consent decision,
    1. would cause the person unacceptable pain and suffering; or
    2. would otherwise be so wholly unreasonable that it is justifiable to override the person's wishes.(126)
The section also confirms that unless NTCAT orders that the person's advance consent decision is to be disregarded, that decision is to take effect according to its terms. Consequently, depending on the terms of the advance consent decision, the proposed health care would be commenced or continued if it had already been commenced or withheld if it had not been commenced, and withdrawn if it had already been commenced.(127)

If the plan does not contain any (or any relevant) advance consent decision (or an advance consent decision that NTCAT has ordered to be disregarded), but contains advance care statements containing the maker's views and wishes in relation to health care action, it is part of the role of the decision maker to give effect to those views and wishes insofar as they relate to the health care action under consideration.

More particularly, the decision maker is required to make decisions consistent with the decision-making principles set out in Advance Personal Planning Act (NT). Those principles set out and discussed in some detail in Chapter 9.4.6.

13.5.2.7 The decision maker appointed by the maker of the advance personal plan as substitute decision-maker for health care action consents

Where the maker of an advance personal plan lacks decision-making capacity in relation to proposed health care action, the health care provider seeking consent in order to take the health care action must seek the consent of the decision maker to carry out the health care action.

However, the Advance Personal Planning Act (NT) requires the decision maker to be both willing and able to make an informed consent decision about health care action proposed. In order to be willing and able to make that decision, the Act requires the decision maker to:
  1. have authority to make a consent decision about the health care action; and
  2. have unimpaired decision-making capacity for the health care action; and
  3. be reasonably available; and
  4. be willing to make the consent decision; and
  5. understand a decision maker's obligation to act in accordance with the decision-making principles set out in the Act;(128) and
  6. have all the information they reasonably need to make a balanced decision about the health care action; and
  7. have had adequate time to consider that information; and
  8. understand the effect of making the consent decision; and
  9. be able to make the consent decision voluntarily and without undue influence from any person.(129)
In relation to requirements 6 to 9 above, the co-operation of the health care provider is necessary to ensure that the decision maker has all the information they reasonably need to make a balanced decision about the health care action proposed by the health care provider. The health care provider must also play their part in ensuring that the decision maker has adequate time to consider that information, understand the effect of making the consent decision and be able to make the consent decision voluntarily and without undue influence.

13.5.3 South Australia - Advance Care Directives Act 2014

13.5.3.1 Kinds of advance care directives under the Act

In South Australia, the Advance Care Directives Act 2013 (SA) creates at least two kinds of advance care directive. The first kind is advance care directives related essentially to medical treatment, particularly medical and related treatment at the end of life. However, it also includes advance care directives that cover not only the medical treatment just referred to but also appoint one or more substitute decision-makers authorised to make (substitute) decisions in relation to health care, residential and accommodation arrangements and personal affairs.(130) The second kind of advance care directive is similar to an appointment of enduring guardianship in which an adult appoints one or more other adults to make decisions for them in relation to personal matters of the kind that guardians appointed by the South Australian Civil and Administrative Tribunal (SACAT) can make, or enduring guardians appointed under the now repealed provisions of the Guardianship and Administration Act 1993 (SA) used to be able to make.

13.5.3.2 The tests for capacity to give an advance care directive

The tests for capacity to give an advance care directive are set out in detail in Chapter 9.3.1 and they apply whether the advance care directive appoints a substitute decision-maker or simply sets out the giver's wishes and instructions for their future health care, end of life, preferred living arrangements and other personal matters.

13.5.3.3 Who may be appointed as a substitute decision-maker?

The question of who may be appointed as a substitute decision-maker in South Australia is dealt with in Chapter 9.4.1. However, in South Australia, a substitute decision-maker may only make a decision under an advance care directive if, at the relevant time, the giver of the advance care directive has impaired decision-making capacity in relation to the decision to be made.(131) Also it is the Public Advocate, not SACAT, either on application from an eligible person or on the Public Advocate's own initiative, that can make a declaration that the giver of the advance care directive has the relevant decision-making incapacity. The Public Advocate may do that when they think it is necessary or desirable in in the circumstances of the case to do so.(132)

13.5.3.4 Binding and non-binding provisions

A giver of an advance care directive may include in that document a provision comprising a refusal of particular health care. If the advance care directive is in force, that refusal of treatment, whether it is express or implied, will be binding either in all circumstances or only in specified circumstances, if such circumstances are set out in the advance care directive. All other provisions of an advance care directive are non-binding provisions.(133)However the Act and the Regulations made under it preclude some kinds of provisions from being included in an advance care directive. These are provisions that are unlawful in themselves or would require an unlawful act to be performed. The Act itself gives as an example a provision requesting euthanasia. Also included are provisions that comprise a refusal of mandatory treatment including medical treatment ordered under a community treatment order or an inpatient treatment under the Mental Health Act 2009 (SA) or treatments ordered under other legislation.(134)

The policy driving the Advance Care Directives Act 2013 (SA) comes to the fore when an advance care directive is in force and it contains one or more binding provisions about refusal of health care that may be proposed. First the giver's treating doctor and any other health practitioner providing health care to the giver is subject to a number of requirements set out in the Act. These are that the health practitioners:
  1. must comply with a binding provision of the advance care directive that relates to health care of the relevant kind; and
  2. should, as far as is reasonably practicable, comply with a non-binding provision of the advance care directive that relates to health care of the relevant kind; and
  3. must, as far as is reasonably practicable, seek to avoid any outcome or intervention that the person who gave the advance care directive would wish to be avoided (whether such wish is expressed or implied); and
  4. must endeavour to provide the health care in a manner that is consistent with the principles in the Act.(135)

13.5.3.5 The broad meaning of "health care" and "health practitioner" under the Act

The effect of the provisions of the Act is that health care means any care, service, procedure or treatment (including medical treatment) provided by, or under the supervision of, a health practitioner for the purpose of diagnosing, maintaining or treating a physical or mental condition of a person. It also includes the withdrawal, or withholding, of health care to the person, including the withdrawal or withholding of life sustaining measures.(136) A health practitioner in this context includes not only health practitioners registered in the following professions: Aboriginal and Torres Strait Islander health practice; Chinese medicine; chiropractic; dental (including the profession of a dentist, dental therapist, dental hygienist, dental prosthetist and oral health therapist); medical; medical radiation practice; nursing and midwifery; occupational therapy; optometry; osteopathy; pharmacy; physiotherapy; podiatry and psychology; but also the following professions and practices - the provision of an ambulance service and medical treatment by a member of the staff of SAAS or other person or body authorised to provide ambulance services under the Health Care Act 2008 (SA) and paramedic.(137)

13.5.3.6 The obligations of health practitioners to give effect to advance care directives

It is the health practitioner's obligation not only to comply with a relevant, binding provision of the advance care directive, but also to provide health care pursuant to a consent granted under the advance care directive, whether that consent is provided by the substitute decision-maker or otherwise.(138) However, there are circumstances in which a health practitioner may refuse to comply with a provision in an advance care directive. They may do so if they believe on reasonable grounds that the giver of the advance care directive either did not intend the provision to apply in the particular circumstances or that the provision did not reflect the current wishes of the giver.(139) Nevertheless, this refusal to comply does not free the health practitioner to proceed to give the health care they consider appropriate. They must seek consent for the health care they propose under the provisions of the Consent to Medical Treatment and Palliative Care Act 1995 (SA).(140)

There are other circumstances in which a health practitioner may refuse to comply with a provision of an advance care directive that specifies the kind of health care that the giver of the advance care directive wishes to receive. These are if the health care:
  1. is not consistent with any relevant professional standards; or
  2. does not reflect current standards of health care in South Australia.(141)
However this provision in the Advance Care Directives Act 2013 (SA) does not apply to, or in relation to, a binding provision of an advance care directive. But remember that only express or implied refusals of particular health care can be binding provision in an advance care directive. Nor does this provision apply if the specified health care comprises the withdrawal, or withholding, of health care to a person, including the withdrawal or withholding of life-sustaining measures. The Act gives as an example a "do not resuscitate" instruction in an advance care directive.(142) Such an instruction is sometimes described as a "do not resuscitate order". If it is set out in an advance care directive, it will be both a binding provision and a withholding of health care that may or may not in fact be a life sustaining measure. Consequently, a health practitioner could not rely on either ground of it being inconsistent with any relevant professional standards or did not reflect current standards of health care in South Australia as a basis for refusing to comply with the advance care directive.

We note also that, while the Act provides that neither a provision in an advance care directive, nor a decision by a substitute decision-maker under an advance care directive nor an order made by SACAT relating to the health care of a person who has given an advance care directive can compel a health practitioner to provide a particular form of health care to a person.(143) We note further that the Act provides that a health practitioner may refuse to comply with a provision of an advance care directive on conscientious grounds.(144) However in relation to the first sentence, the Act goes on to state that that provision does not apply to health care comprising the withdrawal, or withholding, of health care to the person.(145) As to the refusal of health care on the basis of conscientious grounds, we suggest that the health practitioner then has an obligation to refer the giver of the advance care directive to another health practitioner, and where necessary do that with all deliberate speed.

As has been noted earlier in 13.5.3.4, health practitioners, who are providing or are (about) to provide health care to a giver of an advance care directive who has impaired decision-making capacity in respect of a health care decision, are required under the Act, as far as is reasonably practicable, to seek to avoid any outcome or intervention that the giver would wish to be avoided, whether such wish is expressed or implied. Also they must endeavour to provide the health care in a manner that is consistent with the principles set out in the Act.(146) Among the principles that must be taken into account in connection with the administration, operation and enforcement of the Act, including the resolution of disputes, is the principle that competent adults can decide what constitutes quality of life for them and can express that in advance in their advance care directives.(147) In other words, the Act has created an obligation on health practitioners, as part of their professional practice, to take steps to get other appropriately qualified health practitioners to provide health care that is to be provided under the terms of this Act in situations where they consider that the treatment specified in the advance care directive is not consistent with any relevant professional standards or does not reflect current standards of health care in South Australia, or where they refuse to comply with the provision in the advance care directive on conscientious grounds.

We also note that, a contravention of s. 36(1) of the Act, which is set out above and which, among other things, requires a health practitioner to comply with a relevant binding provision of the advance care directive and that a health practitioner should, as far as is reasonably practicable, comply with the non-binding provisions of the advance care directive, amounts to unprofessional conduct.(148)This means that a health practitioner who contravenes s. 36(1) may be subject to the disciplinary provisions of the legislation relating to their registration as a health practitioner.(149)

13.5.3.7 The obligations of substitute decision-makers to give effect to advance care directives

The Act also provides that any substitute decision-maker appointed in an advance care directive has to give effect to the advance care directive too. The Act provides that a substitute decision-maker must, as far as is reasonably practicable:
  1. give effect to any instructions or directions expressed in the advance care directive; and
  2. seek to avoid any outcome or intervention that the person who gave the advance care directive would wish to be avoided (whether such wish is expressed or implied); and
  3. obtain, and have regard to, the wishes of the person who gave the advance care directive (whether such wishes are expressed or implied); and
  4. endeavour to make the decision in a manner that is consistent with the principles set out in the Act; and
  5. must make the decision that he or she reasonably believes the person who gave the advance care directive would have made in the circumstances; and
  6. must act in good faith and with due diligence.(150)
See also Chapter 9.4.6 and 9.4.7.

13.5.3.8 Resolving disputes and dilemmas that arise in relation to advance care directives

This array of obligations on health practitioners and substitute decision-makers on the one hand, and on the other hand a set of circumstances in which a health practitioner may refuse to comply with a provision of an advance care directive, including on conscientious grounds, means that from time to time concerns and disputes will arise. Concerns may arise as to the intention or effect of provisions in an advance care directive, whether a health practitioner is entitled to refuse to comply with a provision, or what a health practitioner should do if they wish to refuse to comply with a provision of an advance care directive. In addition, disputes will inevitably arise in relation to the giving or revoking of advance care directives and what particular provisions in them actually mean and the limits of the circumstances in which they were meant to apply.

Consequently, the Act gives both the Public Advocate and the South Australian Civil and Administrative Tribunal (SACAT) a role to play in resolving such matters.(151) Their roles apply to the following matters:
  1. the giving or revoking of an advance care directive;
  2. a decision, or proposed decision, under an advance care directive;
  3. the provision, or proposed provision, of health care to a person who has given an advance care directive;(152)
The roles of the Public Advocate

The Public Advocate's preliminary assistance role. On application by an eligible person in relation to an advance care directive or on the Public Advocate's own initiative, the Public Advocate may provide preliminary assistance in resolving any of the matters just set out and to provide that preliminary assistance in any appropriate way including by:
  1. ensuring that the parties to the matter were fully aware of their rights and obligations;
  2. identifying the issues (if any) that are in dispute between the parties; and
  3. canvassing options that may obviate the need for further proceedings; and
  4. where appropriate, facilitating full and open communication between the parties.(153)
Mediation. Again, on application by an eligible person, the Public Advocate may mediate one or more of the matters set out above. However, the Public Advocate may bring a mediation to an end at any time:
  1. at the request of a party to the mediation; or
  2. if, in the opinion of the Public Advocate, it is more appropriate that the matter be dealt with by the SACAT.(154)
Note however, that evidence of anything said or done in the course of a mediation is not admissible in subsequent proceedings except by consent of all parties to the proceedings.(155)

Power to make declarations and give advice. The Public Advocate has power, under the Act, to make declarations and may exercise that power, on application by an eligible person, or on the Public Advocate's own initiative, or in relation to a mediation under the Act make such of the following declarations in relation to a matter set out above as the Public Advocate thinks necessary or desirable in the circumstances of the case. These declarations are:
  1. a declaration as to the nature and scope of a person's powers or responsibilities under the advance care directive;
  2. a declaration as to whether or not a particular act or omission is within the powers, or discharges the responsibilities, of a person under the advance care directive;
  3. a declaration as to whether or not the giver of the advance care directive has impaired decision-making capacity in relation to a specified decision;
  4. any other declaration prescribed by the regulations.(156)
In addition, the Public Advocate may also:
  1. give any advice that the Public Advocate considers necessary or desirable in the circumstances of the case;
  2. vary or revoke a declaration under this section.(157)
The following are "eligible persons" to make any of the above applications to the Public Advocate in relation to an advance care directive:
  1. the giver of the advance care directive; and
  2. a substitute decision-maker appointed under the advance care directive; and
  3. a health practitioner providing, or proposing to provide, health care to the person who gave the advance care directive; and
  4. any other person who satisfies the Public Advocate that they have a proper interest in a particular matter relating to the advance care directive.(158)
The Public Advocate may refuse to determine an application for a declaration or advice if, in the opinion of the Public Advocate, it is more appropriate that the matter be dealt with by SACAT.(159) Note that the Public Advocate does not have power to refer the matter to SACAT. That is a matter for the applicant to consider and take the action they consider appropriate.

Note also that the s. 45 of the Act also sets out some administrative and procedural matters. While the Public Advocate may conduct proceedings under this section in such manner as he or she thinks fit,(160) under the common law those proceedings must be procedurally fair in the context of the circumstances of the particular case.

SACAT's functions and powers (jurisdiction) under the Advance Care Directives Act 2013

When exercising its powers and functions under the Act, SACAT is required to seek, as far as is reasonably practicable, to give full effect to the wishes of the giver of the relevant advance care directive.(161)

SACAT's jurisdiction to exercise its powers and functions under the Act has three parts:
  1. jurisdiction to review of a matter dealt with by the Public Advocate;(162)
  2. jurisdiction to make a declaration or direction in relation to a matter within its functions and powers;(163) and
  3. jurisdiction in relation to substitute decision-makers.(164) Note this role (jurisdiction) of SACAT is dealt with at 13.5.3.9, below.
All of these functions and powers (jurisdictions) are enlivened by an eligible person applying to SACAT. Eligible persons are those who were eligible to make an application to the Public Advocate; together with each person who was a party to a mediation conducted by the Public Advocate. (165)

Reviews of matters dealt with by the Public Advocate. When determining an application to a review of a matter dealt with by the Public Advocate, SACAT may:
  1. confirm, cancel or reverse a decision that is the subject of the review; or
  2. confirm, vary or revoke a declaration made by the Public Advocate.(166)
However, when determining such a review, SACAT may:
  1. make any declarations that it thinks necessary or desirable in the circumstances of the case;(167) and
  2. give any directions that it thinks necessary or desirable in the circumstances of the case (including a direction that the provision of particular health care to a person be withdrawn or withheld);(168) and
  3. give any advice that it considers necessary or desirable in the circumstances of the case.(169)
Applications for declarations or directions. Note that these are applications made initially to SACAT and not to the Public Advocate. Consequently, where SACAT is of the opinion that it is more appropriate that a particular application made to it directly for a declaration or direction be dealt with by the Public Advocate, it may, instead of hearing and determining the application, refer it to the Public Advocate.(170)

13.5.3.9 Applications in relation to substitute decision-makers appointed under advance care directives

It is appropriate that SACAT has this role as, in exercising part of the judicial power of South Australia, it can make legally effective decisions in relation to substitute decision-makers.

Again the role (jurisdiction) of SACAT is enlivened by an eligible person making an application to SACAT. Eligible persons are those who were eligible to make an application to the Public Advocate.(171)

If SACAT is satisfied that a person appointed as a substitute decision-maker under the advance care directive:
  1. is a person who cannot be appointed as a substitute decision-maker because they are - (a) not competent to be a substitute decision-maker,

(b) a health practitioner who is responsible (whether solely or with others) for the health care of the giver of the advance care directive,

(c) a paid carer of the giver of the advance care directive;

(d) any other person of a class prescribed by the regulations for the purposes of this section;(172)

or
  1. is no longer willing to act as a substitute decision-maker under the advance care directive; or
  2. has been negligent in the exercise of his or her powers under the advance care directive
then SACAT may:
  1. revoke the appointment of the substitute decision-maker; or
  2. if the giver of the advance care directive is competent - with their consent - make any variation to the advance care directive SACAT thinks appropriate (including by appointing another substitute decision-maker); or
  3. if the giver of the advance care directive is not competent, and if no other substitute decision-maker was appointed under the advance care directive--revoke the advance care directive.(173)
The Act also authorises the Public Advocate to make applications to SACAT at least in relation to whether or not it is appropriate for an appointed substitute decision-maker to continue in that role. If the Public Advocate makes the application, the role of SACAT is limited. It may not take action unless it is satisfied that there has been a change in the personal circumstances of either the giver of the advance care directive or a substitute decision-maker appointed under that advance care directive and because of that change in personal circumstances, it is no longer appropriate that that substitute decision-maker remain in that role. If that set of circumstances obtains, then SACAT may make any of the orders set out in the last paragraph.(174)

The Act goes on to state that SACAT should not, rather than must not, revoke an advance care directive if there are provisions in it that can continue to have effect despite the fact that there is no substitute decision-maker appointed under the advance care directive.(175) However the note to the relevant sub-section points to circumstances in which it would be appropriate not to revoke the advance care directive. It gives as an example, an advance care directive in which the giver's wishes in relation to specified health care (or accommodation or personal matters) are set out. The note goes on to point out that the circumstances contemplated by s. 51(1)(f) of the Act where there would be no substitute decision-maker if the one the subject of the application were to have their appointment revoked were that SACAT could make a guardianship order under the provisions of the Guardianship and Administration Act 1993 (SA) in relation to the giver of the advance care directive requiring the guardian to seek to give effect to the instructions and wishes of the person as set out in the revoked advance care directive.(176) We note that while SACAT is not authorised to appoint the Public Advocate as a substitute decision-maker under the Advance Care Directives Act 2013 (SA), it could appoint the Public Advocate as the giver's guardian under the Guardianship and Administration Act 1993 (SA), if the requirements for the appointment of the Public Guardian as a guardian under that Act were met.

Note the Chapter 9.6 deals with ending appointments of substitute decision-makers and revoking advance care directives in South Australia; but in the context of advance care directives that go beyond binding provisions and health care issues.

13.5.3.10 Jurisdiction of the Supreme Court to review decisions of a substitute decision-makers appointed under an advance care directive

The Act also gives the Supreme Court jurisdiction to review decisions of substitute decision-makers appointed under advance care directives and to conduct those reviews as expeditiously as possible. These reviews are limited to ensuring that the substitute decision-maker's decision is in accordance with the advance care directive and limitations and requirements set out in the Act.

Applications to the Court may be made by:
  1. a health practitioner responsible (whether solely or with others) for the health care of the giver of advance care directive in question; and
  2. any other person who has, in the opinion of the Court, a proper interest in the exercise of powers by the substitute decision-maker,
for it to review the decision of a substitute decision-maker appointed under an advance care directive.

On completion of a review, the Court may:
  1. confirm, cancel or reverse the decision of the substitute decision-maker; and
  2. make such other orders, and give such advice and directions, as the Court thinks necessary or desirable in the circumstances of the case.
However, and most importantly, the Court cannot undertake such a review in relation a decision to withdraw or withhold health care if the giver of the advance care directive is in the advanced stages of an illness without any real prospect of recovery and the effect of the health care would be merely to prolong the person's life.(177)

Does this statutory review jurisdiction, particularly the limitations placed on the exercise of the statutory jurisdiction by s. 52 (2), reduce the scope of the parens patriae power of the Supreme Court of South Australia?

13.5.4 Australian Capital Territory - Medical Treatment (Health Directions) Act 2006

In the Australian Capital Territory any person 18 years or above who does not have impaired decision-making capacity may make a health direction. This is a direction made in writing, orally or some other way refusing or requiring the withdrawal of either all medical treatment or medical treatment of a particular kind.(178) Any such direction may be revoked at any time by the person giving it. They may do this in writing, orally or in any other way, clearly expressing to a health professional or another person their decision to revoke the direction.(179)

Written directions must be in the approved form and must be signed by the person making the directions or on their behalf by someone else in their presence and at their request.(180) Two witnesses must sign the direction in the presence of the person making the direction and in the presence of each other.(181) Directions not in writing have to be witnessed by a doctor and another health professional, both present at the same time.(182)

If the person who has given the direction is still competent when the issue of either not commencing or withdrawing the treatment referred to in the direction arises, the doctor or nurse must follow a process of checking whether the person still does not want the treatment commenced or wants it withdrawn. The doctor or nurse must take all reasonable steps to tell the person about the nature of their illness, the alternative forms of treatment that are available, the consequences of those forms of treatment and the consequences of the illness not being treated.(183) Furthermore, the Act precludes the doctor or nurse from giving effect to the direction unless the person understood the information given about these matters, weighs the various options and confirms their decision (in the direction) to refuse the treatment or to have it withdrawn.(184)

This provision is somewhat absurd. It requires a doctor or nurse to check whether the person wants to continue with their refusal of treatment direction, which is reasonable. It then goes on to apply what has been adopted in England as the test for capacity to give consent to medical treatment.(185) If the person fails that test, then their refusal of treatment direction is not to be acted upon, which is contrary to the whole philosophy of advance treatment directives.

The Act then goes on to impose on a doctor or nurse the obligation not to withhold or withdraw treatment in accordance with a person's direction unless they believe on reasonable grounds that the direction complies with the Act - something which is readily ascertainable - and that the person has not revoked the direction or changed their decision since making the direction - something which is more difficult to ascertain.(186)

If a person who had previously made a health direction has a guardian with power to make medical decisions on their behalf appointed for them by the ACAT under the Guardianship and Management of Property Act 1991 (ACT), and a doctor declares that that person has become a person with impaired decision-making capacity - a matter the ACAT has to be satisfied about before it makes a guardianship order, the guardian is to exercise their decision-making powers consistently with the direction.(187)

If a person who had previously made a health direction makes an enduring power of attorney for health care matters, the making of the enduring power of attorney has the effect of revoking the health directive.(188) However, an attorney under an enduring power of attorney for health care matters can be appointed to do anything in relation to health care matters which include the withholding or withdrawal of medical treatment from the maker of the power of attorney.(189) Such an attorney must abide by the principles of the Powers of Attorney Act 2006 (ACT) and in relation to health care these principles require the attorney to exercise their power only when, after taking into account the maker's wishes in relation to health care matters, they consider it necessary and appropriate to do so in order to promote the maker's health and well-being and is, in all the circumstances, in the maker's best interests.(190) It is suggested that if the maker has given the attorney directions in the form of an advance directive in the enduring power of attorney appointing them, the attorney is bound by those directions under the established common law.(191)

The Medical Treatment (Health Directions) Act 2006 (ACT) specifically states that it does not apply to palliative care and does not affect any right, power or duty held by a doctor, nurse or other person in relation to palliative care. Palliative care is defined in the Act to include the provision of reasonable medical and nursing procedures for the relief of pain, suffering and discomfort and the reasonable provision of food and water.(192) This means that a health direction made under the Act refusing palliative care would have no effect if the person's treating doctor considered palliative care appropriate in the circumstances. It should also be noted that the Act provides that a person who has given a health direction that medical treatment be withheld or withdrawn from them "has a right to receive relief from pain and suffering to the maximum extent that is reasonable in the circumstances.(193)

The Act encourages health professionals and others aware of any health direction made under the Act by a person now in a hospital, hospice or nursing home, to be brought to the attention of the person responsible for the day to day running of the hospital, hospice or nursing home for them to put it on the person's file.(194)

The Act provides a number of protections for doctors, nurses and others. Doctors, nurses or others, who, in good faith and in reliance on a direction or a decision of an attorney under a power of attorney made under the Act, withhold or withdraw medical treatment. They are protected against disciplinary, civil or criminal charges if they do so.(195) Doctors and nurses are also protected from liability if they make a decision in good faith and without negligence that a person revoked or intended to revoke the direction or power of attorney they had made, or that at the time the person made the direction or power of attorney they were or were not capable of understanding the consequences of that direction or power of attorney.(196)

13.5.5 Queensland - Powers of Attorney Act 1998 and Guardianship and Administration Act 2000

The limited form of advance directive created by legislation in Queensland is called an advance health directive. Many of the provisions relating to advance health directives are found in the Powers of Attorney Act 1998 (Qld) but some are found in the Guardianship and Administration Act 2000 (Qld).(197)

In Queensland, adults who have the capacity to make an advance health directive may give directions in that directive about what in common parlance would be their medical care and treatment, and about their future health care.(198) They can also give directions about their special health care, but, because of the kinds of matters included in the definition of "special health care" this kind of health care is likely to be relevant to the matters being covered in this chapter only very rarely.(199) However, the directive may include directions about the withholding or withdrawal of life sustaining measures if the commencement or continuation of such measures would be inconsistent with good medical practice in the case of the person who made the advance health directive.(200) Such a directive can also include a direction requiring that life-sustaining measures be withheld or withdrawn in specified circumstances.(201)

The term "life-sustaining measure" is defined as health care intended to sustain or prolong life and that supplants or maintains the operation of vital bodily functions that are temporarily or permanently incapable of independent operation and includes in particular, cardiopulmonary resuscitation, assisted ventilation and artificial nutrition and hydration, but not blood transfusions.(202)

The makers of advance health directives may give information about their directions. They may also appoint attorneys to exercise power for health matters in the event of the directions proving inadequate. In addition they may provide "terms or information" about exercising such powers of attorney for health matters.(203) The approved form for an advance health directive has 22 printed pages.(204)

Nevertheless, there are substantial limitations on the operation of advance health directives in Queensland. They can operate only when their makers have lost capacity which is defined to mean that they have lost the capacity to understand the nature and effect of the decisions covered by the direction and to freely and voluntarily make those decisions and communicate them in some way.(205)

If the directive contains a direction to withhold or withdraw a life-sustaining measure, that direction cannot operate unless one of the following four situations applies. Firstly, the person has a terminal illness which is incurable or irreversible and as a result of which, in the opinion of both the person's treating doctor and another doctor, the person may reasonably be expected to die within a year. Secondly, the person is in a persistent vegetative state or thirdly, is permanently unconscious, that is with brain damage so severe that there is no reasonable prospect that the person will regain consciousness. Fourthly, the person has an illness or injury so severe that there is no reasonable prospect that the person will recover to the extent that their life could be sustained without the continuation of life-sustaining measures.(206) If one (or more) of those situations applies and the directive contains a direction to withhold or withdraw artificial nutrition or hydration, that direction may be carried out, but only if the commencement or continuation of the artificial nutrition or hydration would be inconsistent with good medical practice and there is no reasonable prospect of the person regaining capacity to make decisions about health matters.(207)

While a person may make an advance health directive without also appointing an attorney for personal or just health matters, those administering the Act and the structure of the legislation encourage people also to appoint such an attorney when making an advance health directive. Subject to the terms of the directive, the attorney can make decisions about health matters that the person could have made if they had capacity and, if authorised by the person appointing them, can make decisions about health matters not covered by the directive.(208) It should be noted that there are two statutory tests for capacity that are relevant here; the test for a person's capacity to make an advance health directive and a separate and different test for the capacity to make an enduring power of attorney.(209) The test for capacity to make an advance health directive is discussed below at 13.6.2. The test for capacity to make an enduring power of attorney is discussed in Chapter 10.3.2.

The Guardianship and Administration Act 2000 (Qld), when dealing with substitute consent for medical treatment, provides that if a person has given a direction in an advance health directive that deals with the treatment in question, the matter is to be dealt with only under the direction.(210) However, the same Act also provides that, in a situation where decisions have to be made quickly, a life-sustaining measure can be withdrawn from an adult without consent if the person's health provider - a term which covers the person's treating doctors and associated health professionals, but may reach further - reasonably considers that the person has lost the capacity to make decisions about their medical treatment, that the commencement or continuation of the life-sustaining measure would be inconsistent with good medical practice and that, consistent with good medical practice, the decision to withhold or withdraw the life-sustaining measure must be taken immediately.(211) This cannot be done if person's health provider knows that the person objects to the withholding or withdrawal of the treatment.(212) If it is done, the health provider must certify in the person's clinical record the various matters that enabled the withholding or withdrawal of the life-sustaining measure.(213)

If life-sustaining treatment is withheld or withdrawn from a person other than in the urgent circumstances just referred to, the person's health provider must certify in the person's medical records as to the various matters that allowed the withholding or withdrawal to occur, for example it was done under a direction in the person's advance health directive and the conditions precedent for doing so were met.(214)

The Queensland legislation makes it an offence to carry out health care, which includes medical treatment, on a person unable to give a valid consent to their own health care, unless it is health care that has been consented to under legislation or health care that may be carried out without consent.(215)

There is no specific provision protecting health professionals from civil or criminal liability for withholding or withdrawing medical treatment from a person as a result of that person's advance health directive or some other legislative provision, but they would not be either civilly or criminally liable for carrying out any actions authorised by law.

13.5.6 Western Australia - Part 9B of the Guardianship and Administration Act 1990

Part 9B of the Guardianship and Administration Act 1990 (WA) applies to documents called "advance health directives" made under the detailed provisions of that Part. It does not apply to advance directives made under the common law. The common law in this respect is specifically preserved by Part 9B.(216)

13.5.6.1 Advance health directives in Western Australia

Part 9B commences with the statement that a person who has reached 18 years of age and has full legal capacity may make an advance health directive containing treatment decisions about their future treatment.(217) Treatment decisions are decisions to consent or refuse consent to the commencement or continuation of any treatment. Treatment means medical or surgical treatment or dental treatment or other health care. Medical and surgical treatment includes life sustaining measures which are medical, surgical or nursing procedures directed at supplanting or maintaining a vital bodily function that is temporarily or permanently incapable of independent operation, and includes assisted ventilation and cardiopulmonary resuscitation. Medical and surgical treatment also includes palliative care which is medical, surgical or nursing procedures directed at relieving a person's pain, discomfort or distress. However, the definition of palliative care excludes life sustaining measures.(218)

13.5.6.2 Making an health directive

Advance health directives made under Part 9B must be either in the form set out in the Guardianship and Administration Regulations 2005 (WA) or substantially in that form.(219) They may be made by anyone who is 18 years or older who has full legal capacity and who understands the nature and consequences of the treatment decisions in their advance health directive.(220) Advance health directives must be signed by the maker and two witnesses in the presence of each other.(221) A register may be established so that advance health directives may be registered.(222)

13.5.6.3 Giving effect to advance health directives

Doctors and other health professionals may rely on treatment decisions in advance health directives only when the maker is unable to make reasonable judgments about that treatment and only in circumstances specified in the directive.(223)

The Guardianship and Administration Act 1990 (WA) specifically provides that a treatment decision set out in an advance health directive does not operate if circumstances exist or have arisen that:
  1. the maker of that directive would not have reasonably anticipated at the time they made the directive; and
  2. those circumstances would have caused a reasonable person in the maker's position to have changed their mind about the treatment decision.(224)
In determining whether to ignore a treatment decision in an advance health directive on the grounds just set out, whoever proposes to consider making such a decision must take account of:
  1. the maker's age at the time the made the directive and their age now,
  2. the time between the making of the directive and now,
  3. whether the maker reviewed the treatment decision and, if so, how long ago, and
  4. the nature of the maker's condition, the nature of the treatment and the consequences of providing or not providing the treatment.(225)
When someone, usually a health professional, is seeking to decide whether a now incapable person's treatment decision in an advance health directive still applies, they may consult the person's enduring or appointed guardian if they have either, or both, of them or anyone who qualifies under the Act to be the person's "person responsible" or anyone else considered appropriate in the circumstances.(226) As will be seen below, WASAT has jurisdiction to decide whether a treatment decision in an advance health directive is valid or not. It would be able to make use of this ability to consult in coming to its decision.(227)

If the maker of the advance health directive has changed their mind about a treatment decision in their directive, that treatment decision is to be taken as having been revoked.(228) It is suggested that this provision applies only where there is evidence that the maker has changed their mind. It is not a matter that doctors or other health professionals have to investigate unless they are made or become aware of the maker's change of mind.

This approach is suggested for three reasons. First, as already noted, Part 9B commences with the statement that a person who has reached 18 years of age and has full legal capacity may make an advance health directive containing treatment decisions about their future treatment.(229) That is the policy of the Act and should be both respected and given full effect to. Second, the Act specifically provides that where a person has made an advance health directive that contains a treatment decision that has now become operative, the question of whether or not treatment is to be provided to the person must be decided in accordance with that treatment decision.(230) As is apparent from the Act, as discussed in Chapter 12. 7. 4, that the treatment decisions of the person set out in their advance health are to be given effect to before their guardian or person responsible is to be called upon to give or refuse substitute consent to their treatment. Third, the Act specifically provides that, if the maker of the advance health directive subsequently makes an enduring power of guardianship, it does not follow that they have either revoked their advance health care directive or changed their mind about a treatment decision in their advance health directive.(231)

13.5.6.4 The role of WASAT in relation to advance health directives

WASAT may make a range of decisions about advance health directives, on the application of anyone WASAT thinks has a proper interest in the matter.(232) When exercising its powers WASAT may:
  1. make a declaration that the maker of an advance health directive is unable to make reasonable judgments about treatment to which a treatment decision in their directive applies,(233)
  2. give directions about giving effect to a treatment decision in a directive or the construction of the terms of a directive,(234)
  3. make a declaration that a treatment decision in a directive is to be taken to have been revoked,(235) and
  4. make an order recognising an advance health directive from another jurisdiction that corresponds sufficiently with the form and effect of Part 9B to warrant recognition.(236)
  5. Revoke any declaration that it makes in relation to the matters set out in 1 to 4 above.

13.6 Advance directives under the common law

There is growing interest in making advance directives in Australia, although there is no way of knowing just how many people have made them. Educating the public about the importance of advance directives has been a priority of public health community and state health departments in many countries.(237) There is a growing consensus that the more general concept of advanced care planning, of which advance directives are a part, should be encouraged. Advanced care planning refers to the process of preparing for likely scenarios near the end of life and the assessment of and dialogue about a person's understanding of their medical history and condition, values preferences and personal and family resources.(238) In Australia, the Respecting Patient Choices Program, which began in 2002 as a pilot program to promote and implement advance care planning in Victoria has since been extended to other states and settings.(239)

It can be argued that the four States and two Territories that have enacted advance directive legislation have preserved the common law in such a way that it can be relied upon to allow for the making of advance directives outside the limits of the narrow statutory advance directive regimes created by legislation in those States and Territories.

This argument is strongest in the Northern Territory where the Advance Personal Planning Act (NT), which came into force of on 17 March 2014, states in terms that it does not affect any right an adult with decision-making capacity for health care action has to refuse the health care. Nor does it affect the common law relating to the recognition of an adult's instructions about health care action for the adult that are given other than in an advance personal plan.(240)

As noted at the commencement of this chapter, the relevant Queensland legislation specifically states that it "does not affect common law recognition of instructions about health care given by an adult that are not given in an advance health directive".(241) The legislation in Victoria and the Australian Capital Territory specifically states that it does not affect the right of a person under any other law to refuse medical treatment.(242) The South Australian legislation, including the Advance Care Directives Act 2013 (SA), does not refer to this matter while in Western Australia the common law relating to a person's entitlement to make treatment decision relating to their future treatment is specifically preserved.(243) The judges do not rush to hold that legislation covers the field and replaces the common law unless the legislation makes that clear by express words or by necessary implication.

In pursuit of the policy of encouraging adults to make advance directives, New South Wales has adopted a common law /best practice recommendation approach to advance directives. In 2005, the New South Wales Department of Health published a Guideline "Using Advance Care Directives" for the purpose of providing health professionals with information on the best practice use of advance care directives.(244) While it focuses on advance directives that relate to treatment and care in a medical setting, its advice is relevant to advance directives that may go beyond health care issues.

The Guideline suggests that advance care directives that comply with the requirements set out in it are legally binding in NSW and that they function as an extension of the common law right of an adult to determine their own medical treatment.(245) The Guideline notes that failure to comply with an advance care directive that meets the requirements set out in it may result in health professional involved incurring civil liability for providing the treatment.(246) However, the main thrusts of the Guideline are to show health professionals how to deal with advance directives in the processes of planning for and providing treatment and care to patients, what the requirements for an advance directive are, and to answer questions that frequently arise in relation to advance directives. The Guideline is consistent with other expositions as to what, in the absence of cases decided in Australia, is the Australian common law in relation to advance directives.(247)

While the Guideline concentrates on written advance care directives, it also deals with advance care directives made orally stating:

[A]nyone can make an oral directive by making their wishes known through discussion with their family or health care team. This may arise where physical disability, illness or illiteracy means that writing is not possible but may also be the person's preferred approach. These wishes should be clearly documented in the person's medical history, even if a specific advance care directive 'form' is not used, and made known through liaison between treating health professionals.(248)

As noted earlier in this chapter at 13.2.2, in New South Wales, Tasmania and Western Australia an adult can make an advance directive by "proxy" by appointing an enduring guardian and giving them directions, in the form of or amounting to, an advance directive.(249)

In Queensland this can be achieved by appointing an attorney under an enduring power of attorney either for, or including for, personal matters including health matters.(250) In New South Wales such appointors can include, in the appointment, binding lawful directions to the enduring guardian.(251)In Tasmania they can impose conditions as well as include binding lawful directions.(252) In Western Australia appointors may include directions as to how enduring guardians are to perform their functions.(253)

In Queensland and now Victoria, under its Powers of Attorney Act 2014 (Vic), which is similar to the Queensland legislation, the approach is to allow appointors to appoint enduring attorneys for personal and/or financial matters (and in Victoria, attorneys to make decisions about medical treatment). Attorneys can be empowered to exercise wide or narrow powers by placing, or not placing conditions on the exercise of those powers of attorney and/or by giving no, some or many instructions as to how to exercise their powers of attorney. By these means, in enduring powers of attorney covering personal and health care matters, forms of advance directives that may meet the needs of those who prefer to have substitute decision-makers operating under instructions, rather than seeking to predict the future themselves in a binding advance directive, could be developed.

In South Australia, under the Advance Care Directives Act 2013 (SA), these appointees are now called substitute decision-makers; but they are appointed in the advance care plan itself or in an appointment of enduring guardian which has been converted, by operation of that Act, into an advance care directive.

In the Northern Territory, the Advance Personal Planning Act (NT) covers the ground covered elsewhere by advance care directives, enduring guardianship, enduring powers of attorney for financial matters and by substitute decision-makers for medical and dental consent (persons responsible). And it provides for "decision makers" to be appointed, in an advance personal plan, to make decisions in relation to one some or all of the areas of decision-making that can be covered by that plan.

As already noted at Chapters 9.4.5, 11.4 and 12.4.11, in the 2009 case, Hunter and New England Area Health Service v A, McDougall J held that and advance directive set out in an appointment of enduring guardianship was binding on doctors treating the appointor when the appointor was incapable of giving a valid consent to treatment.(254) Consequently, by implication, a common law advance directive is also binding on the enduring guardian, the appointor's carers and the appointor's other health service-providers. Where it is an advance directive not associated with an appointment of enduring guardianship, it is binding on any person responsible concerning consent to health care for the person, any carer or health service-service provider for the maker of the advance care directive.

13.6.1 What does the common law require for an effective advance directive?

In order to make an advance directive that will be given effect to by a person's treating health professionals, their substitute decision-makers and others when they have lost capacity, the following requirements have to be met:
  1. The person must have had capacity to make the advance directive when they made it;
  2. The advance directive must clearly apply to the clinical circumstances that now exist;
  3. The advance directive must have currency; and
  4. The advance directive must have been made free from undue influence.
Each of these requirements will be taken up separately below.

It should be noted however that there are no formal requirements for advance directives. They may be oral or in writing.(255)

There can be difficulties establishing the existence of a binding oral advance directive. There is first the need to establish its existence to the appropriate standard of proof by convincing and inherently reliable evidence and, second, the need to show that the person's expressed views represent "a firm and settled commitment and not merely an offhand remark or informally expressed reaction to other people's problems".(256)

Because there are no formal requirements for advance directives, they do not have to be witnessed by another person. Nevertheless, it is preferable that they are. If the document is witnessed, then the witness or witnesses can assist on the questions of whether or not the person had capacity when they made it, whether the document was a forgery or whether there was any undue influence on the maker of the advance directive when they made it, should any of these or other issues arise subsequently and after the maker has lost capacity. In New South Wales and Tasmania if the advance directive is part of a document appointing an enduring guardian, it must be witnessed according to the requirements for witnessing appointments of enduring guardians.(257) If the advance directive is not part of a document appointing an enduring guardian, there are no requirements as to witnesses.

As there are no formal requirements for a valid advance directive, there can equally be no formal requirements for the revocation of an advance directive. It has been suggested that both a written advance directive and an advance directive executed under seal can be revoked orally.(258)

We note that while the practice of making advance care directives with lawyers addresses some of the witness requirements, and is often pragmatically performed as part of execution of a range document such as Enduring Powers of Attorney, Enduring Guardianship documents and even wills, this practice has two important limitations. First, one of the criticisms of advance care directives is that they are not disseminated at relevant times such as upon acute admission to hospital. This is often the case with advance care directives that sit within the terms of a will, or sit literally in a solicitor's office. Secondly, and most importantly, an advance care directive is best drafted with the person's health care professional. This leads to the creation of advance care directives that contain far more relevant and enforceable treatment wishes.

13.6.2 Capacity to make an advance directive

The person who made the advance directive must have been competent at the time they made it. Although advance care directives frequently take the form of responses to structured question templates or "forms" which prompt people to consider the relevant issues at the end of life and express their views,(259) they should be completed by the maker as much as is possible. Some people choose to draw up their own directives.

If an advance directive is drawn up by someone other than the maker, then the maker must have had capacity both at the time they gave instructions for the drafting of the advance directive, and at the time they adopted it as their document either by signing it or by some other means.

The capacity of people living independently in the community who educate themselves about advance directives and who initiate discussions about them with a health care professional will seldom be in doubt. Moreover, the fundamental starting point is a presumption of capacity for all adults. There must be a trigger to rebut that presumption. Such triggers might include current physical or mental illness, including dementia, or being a resident of an aged care facility or an inpatient in an acute hospital. In the presence of such triggers, it is wise for the health care professional involved in the process to carry out at least the basic checks regarding capacity. Where a person's capacity to make an advance directive is in doubt, the opinion of their treating doctor or a specialist with expertise in assessing capacity might be sought if such resources are available. Examples of those from whom assessments might be sought are; old age psychiatrists, geriatricians, neuropsychologists and neurologists.

In New South Wales and Tasmania if the advance directive is part of a document appointing an enduring guardian, the test for capacity of the maker will be the same as the test for capacity to make an appointment of enduring guardianship. That test is set out in Chapter 9.3.2 but see also 9.3.3.

While there has been no decided case in Australia on the test for capacity to make an advance directive, the test adopted must honour the right established in the common law to make advance directives.(260) The test must also allow for those who draw up their own advance directives. The usual starting point for capacity to make enduring documents in Australia is the statement by Dixon CJ, Kitto and Taylor JJ in the High Court case, Gibbons v Wright:

The mental capacity required by law in respect of any instrument is relative to the particular transaction which is being effected by means of the instrument, and may be described as the capacity to understand the nature of the transaction when it is explained.(261)

This test is more relevant to situations in which someone else drafts the advance directive for the maker and explains it to them, but it requires that the person understands the nature and the effect of making an advance directive. This means that the maker would need to understand and demonstrate this understanding in their own words that their advance directive:
  1. was a binding statement of their wishes in relation to medical treatment or care they wish to receive in relation to certain illnesses or when they had reached certain levels of functioning (This statement may contain other personal matters such as the location of care);
  2. would become irrevocable when they lost the mental capacity to revoke or change it; and
  3. would, in its unchangeable form, be acted upon by health professionals, carers, family members and others as it would be treated by them as binding upon them unless it did not, on a fair reading, apply to the circumstances they were dealing with.
The question of how much makers of advance directives need to know, understand and decide about their future treatment is a complex one. It is suggested that the answer lies in the nature of the advance directive, the more specific and detailed of which, the more understanding is required. If the advance directive is about the specific medical treatments the maker wishes to receive in relation to a certain illness or certain illnesses, then their knowledge and understanding of the condition or conditions they have and of the nature and effect of the treatments available for such conditions may have to be substantial. If however the advance directive is about the general kinds of treatment or principles of care the maker wants when they have reached certain levels of functioning, then their understanding of the conditions that brought them to these positions and the treatments for those conditions may not need to be very sophisticated. It should be noted that advance directives about medical treatment will usually be a sophisticated form of anticipatory refusal of medical treatment, which is well established in the common law as part of a competent adult's right to self-determination.(262) Consequently, it is not appropriate to impose requirements that render it impossible to give effect to this right.(263)

An additional consideration in relation to the question of how much makers of advance care directives need to know relates to the gravity of the decision. It is hard to think of a more grave decision than one about death. This was articulated by Lord Donaldson MR in the case In re T:

What matters is that the doctors should consider whether at that time he had a capacity which was commensurate with the gravity of the decision which he purported to make. The more serious the decision, the greater the capacity required.(264)

In England it has been suggested that the test for capacity to make an advance statement about medical treatment is similar to that for capacity to make a contemporaneous medical decision.(265) This would invoke Thorpe J's test for capacity to give consent to treatment which, in broad terms, requires that the person be able to comprehend, retain and weigh up relevant information and then make a choice.(266)This has more relevance for advance directives that focus on specific treatment decisions about specific medical conditions, such as dialysis for renal failure or chemotherapy for cancer. However, it could also be seen as requiring the maker to understand the nature of current conditions and of treatment options not only for those current conditions but also for future conditions that the maker may develop. This leads to the view that advance directives about medical treatment may require a higher level of cognitive ability, at least of frontal executive functions such as planning, at the time they were made than that required for making current medical decisions. As pointed out by Fazel and others, it is difficult enough for healthy people to imagine the whole range of situations that might befall them.(267)

13.6.3 Assessing capacity to make an advance directive

13.6.3.1 Relevant conditions

Before assessing the person's understanding of an advance directive, a number of conditions such as delirium, significant depression or advanced dementia, which might preclude capacity either temporarily or permanently, must be identified. For example, in contrast to an outpatient or community setting, one would expect a high prevalence of incapacity amongst elderly hospital inpatients and residents of care facilities who might be approached to consider the issue of advance directives.(268) This mandates a more considered approach to the assessment of capacity than is taken with the current zealous approach to completion of advance care statements upon entry to nursing homes or acute hospital. Similarly, patients in intensive care units are often approached early on in their admission to make advance directives. In a study of levels of care in the intensive care unit, of the 11% of patients who had resuscitation directives, 65% were established in the ICU during the first 24 hours.(269) Given the increased risk of cognitive impairment (i.e. due to delirium) and potentially reversible conditions such as pain and depression which might hinder the person's ability to be involved in such a process, it is incumbent upon treatment teams to exclude delirium at such times prior to considering the use of advance directives. Many medical conditions can affect cognitive function, often in subtle ways, leaving the validity of advance directives written during times of serious illness open for dispute.(270)

Delirium - particularly hypoactive or quiet delirium -is notoriously missed by healthcare professionals both in acute hospital settings(271) and in residential care settings.(272) Older patients and those with pre-existing cognitive impairment or dementia are more likely to have undetected delirium.(273) Moreover, delirium is also highly prevalent amongst dying patients - the very people who are often approached to make these directives, usually too late - not only as a pre-terminal event but also in the last weeks of life.(274)

These findings have twofold significance. Firstly, advance care directives should be made before acute hospital admission and the terminal phase of illness. Secondly, they provide sufficient justification and impetus to rebut the presumption of capacity in acutely unwell patients, particularly elderly or dying patients.

Additionally, pain, a common symptom amongst ageing or terminally ill patients, particularly makes decisions about end of life extremely difficult and effective pain management is essential prior to undertaking such discussions.

In addition to being free of delirium and pain, the maker should be free from any major disturbance of mood, suicidal ideation or psychosis that may interfere with their ability to decide on future treatment. Symptoms often associated with depression such as hopelessness, delusions of sin, guilt and punishment; and nihilistic or somatic delusions (e.g. a conviction that the person has cancer or is dying) will preclude capacity to make an advance directive.(275) Notwithstanding this, decisions regarding end of life and death don't always reverse with treatment of depression. This was highlighted in a study by Hooper and colleagues(276) which showed that of 22 patients (mean age of 77) with major depression, five (42%) wanted voluntary euthanasia when depressed, while only one (8%) still wanted euthanasia after recovery. When considering a hypothetical life threatening illness with uncertain prognosis, 83% of patients in the depressed state opted for future voluntary euthanasia while 58% still opted for future voluntary euthanasia after recovery from their depression. This suggests that even depression is not an absolute contraindication to making an advance directive and that each case needs to be assessed on its own merit and expert advice regarding capacity assessment should be sought when there is doubt.

Dementia is not a contraindication to making an advance directive. For example, one study showed that a fifth of patients at referral with dementia, particularly those with a higher premorbid IQ, were competent to make an advance directive.(277) As stated throughout this text, the complexity of the decision determines the amount of cognitive reserve (or brain function) required to make the decision. Darzins and others refer to a spectrum of decisions from simple (e.g. deciding whether or not to have a blood test) to moderate (e.g. deciding where or not to have a course of antibiotics) to difficult (e.g. deciding whether or not to have a carotid endarterectomy).(278) While more advanced dementia might compromise a person's ability to make a complex advance directive, many people with dementia still retain the ability to make simple advance directives, particularly those who have made their wishes known prior to developing dementia, so that there can be some way of checking the consistency of their wishes. Accordingly, some patients with dementia may be competent to make an advance directive about resuscitation or place of death but not about chemotherapy.

Most importantly, it has been shown that when executed properly, increasing the number and implementation of advanced care wishes improves end-of-life care for people with dementia. Livingstone et al ran a ten-session manualized, interactive staff training program in a 120-bed nursing home in London, and demonstrated significant increases in advance care documentation, increased consultation with and satisfaction about decisions of relatives, and increased confidence of staff members about end-of-life planning and implementing advanced wishes.(279) Another link between advance directives and outcome in dementia is the "Do Not Hospitalise Order." In a controlled intervention implementing the 'Let Me Decide' Advance Care Directive in two hospitals and the surrounding 21 nursing homes (NHs), compared with a non-intervention hospital and nursing homes, Caplan demonstrated decreased emergency calls to the ambulance service, hospital admissions and lower mortality in the intervention homes.(280)

It is helpful to use a checklist to consider and address any of the potentially reversible or relevant irreversible conditions discussed here which might impact on capacity to make advance directives. For such a checklist see Box 2 below. If the person has conditions that impact on their decision-making that need investigation or treatment, this should be done and their capacity to make an advance directive should be reviewed when those conditions have stabilised.

In contrast, there are some conditions such as mental illness and intellectual disability, that when identified lead to an exclusion of people from participation in this important process of advance care planning due to a faulty presumption of no capacity based on diagnosis alone. Yet, despite often being neglected in mainstream health programs that promote advance care planning, people with serious mental illness such as schizophrenia are able to designate treatment preferences in response to end-of-life health state scenarios.(281) Providing equitable access to advance care planning and documentation of such is extremely important and relevant to people with schizophrenia, who have higher mortality and die some 20 years younger than the rest of the population.(282) Davie noted some ten years ago that people with pre-existing mental health problems who develop a terminal illness and require end-of-life care are possibly among the most underrepresented and deprived populations in our society.(283) They deserve a voice in deciding that care.

New South Wales Health has tried to redress these inequities by working to normalise and embed Advance Care Planning across the whole healthcare sector, including by people with mental illness. The two part resource Dignity Resect and Choice: Advance Care Planning and End of Life Decisions for People with a Mental Illness has been developed to support both people with mental illness, their families, carers, and health professionals.(284) Further, as part of implementation of the Australian Commission on Safety and Quality in Health Care quality standards mentioned earlier, some health districts have developed specific guidelines for end of life advance care planning for people with mental illness.(285)

Similarly, in the field of intellectual disability, as discussed in Chapter 1, an emerging body of work has acknowledged the right of people with intellectual disability to be involved in end of life decisions and to improve their access to such.(286)

13.6.3.2 Maximising involvement

Regardless of their diagnosis, there are many ways to maximize a person's involvement in the process of advance care planning and documentation. Barriers to communication (e.g. background noise, poor lighting and flat hearing-aid batteries) should be dealt with so that the person can be at their best and if possible, free of distractors.(287) A checklist is provided in Box 1 below. The person must be offered sufficient accurate information to make an informed decision. Providing education is a crucial part of assessing capacity: "capable people have been deemed incapable because no one bothered to explain the situation properly to them".(288) The person usually needs information to understand the meaning of the types of clinical scenarios that may arise in their situation, and the benefits and burdens, consequences of various treatment options. Key medical terms should be explained in words that can be understood.(289)

Someone who is identified as significantly involved in the active care of the person and can discuss prognostic information in clear terms should carry out this discussion. It is recognised that pastoral care workers or clergy also frequently conduct these discussions but, in order for it to be useful, such information needs to be communicated to the treatment team; therefore a multidisciplinary approach is advised.(290)

Most importantly, people with any disability that affects their decision making, whether it be cognitive or secondary to mental illness, have the right to be provided with supported decision making to make advance care directives. We have discussed this at length both in regards to intellectual disability in Chapter 1, but also in regards to dementia. It is important to ensure that people are afforded the right to make the advance care directive they are capable of making. In acknowledging this, decisions about the end of life are not limited to decisions about intubation, oxygen delivery, antibiotics or chemotherapy. Sometimes, people prefer, and are only capable of, making decisions about where they want to die or what music they want played at their funeral or what they want to be buried with. This needs be supported and respected. Anecdotally and clinically, we note that distress and anxiety is often relieved by patients if they feel that their wishes about the end of life will be respected and not discounted or ignored because of their disability.

Box 1: Questions to assist clinicians in assessing capacity to make an advance directive

  1. Does the person have a history of depression or other psychiatric disorder?
  2. Is there evidence that they have a disorder now (e.g. evidence of sad mood, delusions, suicidal ideation)? Have they got a sustained, sad mood and are unable to be cheered up by anything? Do they feel they deserve to die?
  3. Does person understand what an advance care directive is?
  4. What does the maker want to decide about? (For example their goals or values about what is tolerable at end of life? What specific treatments they either want or don't want? Do they want cardio-pulmonary resuscitation?)
  5. Is the person aware of the alternatives to the choice they are making?
  6. Can the person nominate consequences of the choices they are making?
  7. Can the person repeat what they have chosen to do at the end of the discussion?

Box 2: Potentially reversible or relevant irreversible conditions which might impact on capacity to make AD

Intrinsic: ie.
  • Pain,
  • Delirium (e.g. caused by constipation, hypoxia, infection, drug toxicity),
  • Sleep Deprivation
  • Depression (particularly important to exclude before taking an advance directive)
  • Dementia (maximize participation with cues, simple language etc.)
  • History of Psychiatric illness? Discuss with treating doctor

Extrinsic: ie.
  • Environment (e.g. noise, flat hearing aid battery)
    • Are family pressuring patient or overruling opportunity for discussion by indicating either:
      • that discussing such issues is too upsetting; or
      • that the patient's existence is a burden (N.B. Patient perception that they are burden may be a family issue or a sign of depression)

Investigate/Treat conditions that impact on decision-making

and review capacity for making advance directive when stable.

Provide supported decision making to allow the person to make the advance care directive they are capable of making.

13.6.3.3 Tools and instruments for assessing capacity to make an advance directive

As with other areas of capacity assessment, the assessment of capacity to make an advance directive should include the use of standardized screens or more comprehensive measures of general cognitive abilities, together with assessment of the task-specific functions involved in making an advance directive.

Screening measures such as the Mini Mental State Examination (MMSE) do not measure capacity to complete an advance directive, but may give a guide to overall cognitive function which might help distinguish between those who are clearly unable to participate in the process and those who are able. One study showed that those who scored less than 16 out of 30 on the MMSE lacked capacity to complete an advance directive,(291) although global statements that link MMSE scores with conclusions about capacity are never helpful because they discount the variation in task complexity. Similarly, neuropsychological testing does not measure capacity to complete an advance directive; but it may provide information regarding cognitive functions such as judgment, problem solving, reasoning and planning, crucial to the process.(292) Again ultimately, regardless of the extent and nature of cognitive impairment, the functional test, namely whether the person understands the nature and effect of their decision, is always the determinative question.

There is no gold standard instrument for assessing capacity to make an advance directive, although there are structured measures available. The Decisional Aid for Scoring Capacity to Complete an Advance directive has six domains. These are:
  1. Understand the directive
  2. Directive use (does the person understand how and when the directive can be used to influence their future health care)
  3. Levels of care (is the person able to define what they consider intolerable conditions and treatments)
  4. Ability to state a choice
  5. Appreciation of consequences of choice
  6. Consistency of choice.(293)
Fazel and others used a vignette approach for assessing competence to complete advance directives in 50 elderly volunteers living in the community (mean MMSE = 27.4) and 50 patients with dementia (mean MMSE = 15.5) on first referral from primary care.(294) The two vignettes included first, a situation post-stroke where swallowing difficulties existed and a decision had to be made whether or not to accept a naso-gastric feeding tube; and second, a situation in which the person had to decide whether or not to investigate bleeding from the bowel and possibly surgery if they had Alzheimer's disease and were living in a nursing home. Each vignette was read to each participant after which a short semi-structured interview of nine questions was conducted, asking the participant to give a summary of the situation, treatment choice (repeated at the end to check consistency), other options available, reasons for the treatment and problems, short and long term effects of the treatment choice and consequences for the person and their family. Acceptable answers which might indicate ability to discriminate between the intervention and non-intervention choices include: "to live," "in order to keep me alive". A score = " height="12" width="9">6 (out of a possible score of 10) was considered to distinguish those who were competent using validation by clinical judgment of competence by two old age psychiatrists. This structured interview approach is but one way of distinguishing who might be capable of making an advance directive and who might not. The kinds of questions posed by Fazel and others to assess competence provide a useful structure for clinicians assessing patients who wish to make advance directives. Regardless of whether a structured or non-structured method is used, the process of assessment must be individualized, using open ended loosely structured interviews and checking for consistency as indicated in Box 1 above.

If there is doubt about capacity to make an advance directive, the person's wishes should still be sought as it is useful in these circumstances to take a values statement and participate in advance care planning rather than a formal directive. It is also helpful in such situations to check with family if this is consistent with the person's prior personality or expressed wishes, although the "right to change your mind when your mind has changed" is well acknowledged. Language should be kept simple, with one idea communicated at time and, if necessary, reminders, lists, cues or pictures should be used to facilitate understanding.

13.6.3.4 Retrospective assessment of capacity to make an advance directive

When a patient presents with a written advance directive their treating team should treat it as a properly made and effective document unless or until there is some proper basis for believing that it was not properly made or is no longer in operation.

As previously stated, there is a presumption in law that an adult has capacity. That presumption can be rebutted by evidence to the contrary. However, it is not up to the treating team to go hunting for it unless their suspicions have been aroused by their own observations or by credible information. Nevertheless, doubt can arise because of information coming to hand to indicate that the maker did not have capacity at the time the advance directive was made or to indicate that for some other reason it is no longer in operation. In this situation it is prudent not to continue to comply with the advance directive. The basis for doubt about the advance directive must then be investigated quickly and a decision made as to whether or not the advance directive will be complied with. The advance directive cannot be set aside because there are doubts about it on the part of the treating team, the question of its status must be resolved.

If there is doubt about the continuing operation of the advance directive, it is up to those promoting its continuing operation to show that it remains effective.(295) If there is no one who wishes to do this, those proposing treatment contrary to the requirements of the advance directive must make honest attempts to resolve the matter. The directions of the advance directive can only continue to be disregarded when enquiries show that there are proper grounds for doubting either that the person had capacity when they made the advance directive, or for doubting that the advance directive is still in operation for other reasons, such as that the person has changed their mind and revoked the advance directive. Another reason to continue to disregard an advance directive is if enquiries show that it was made when the maker was under undue influence and did not reflect their wishes.

Other information may come from the maker's general practitioner's records or from the nursing notes, medical reports, their family and, if relevant, residential care facilities. Such information may provide insight into the person's cognitive or mental state around the time the advance directive was made or in relation to any other reason why the advance directive should not be acted upon.

If the advance directive is one that is limited to a certain illness or certain illnesses, doubt may be cast on its validity due to lack of specificity or currency because the maker did not anticipate the specific situation that has now arisen. Concerns can also arise because fear that following the advance directive may result in suffering by the patient. These concerns were outlined previously in this chapter.(296) In such cases, commentators have advised doctors to treat according to the best interests standard while maximizing consensus with the person's family. Others have suggested that withholding treatment in accordance with a legally invalid advance directive risks substantial harm to the patient and may constitute breach of the duty of care and negligence.(297)

Now back to the requirements to be met before an advance directive will be given effect to.

13.6.4 Requirements to be met before an advance directive will be given effect to

13.6.4.1 Advance directive applies to the current clinical circumstances

For an advance directive to be binding it must, on a fair reading, apply to the clinical circumstances that have arisen. This requirement can be met by advance directives which refer specifically to the current condition the person has and set out how it is to be treated. It can also be met by advance directives that are stated in terms of the person's level of functioning and what kinds of treatment they want to have if they have reached certain, stated levels of functioning. For example, a person may not want active and interventionist treatment if they are at a certain level of functioning (e.g. such as being unable to perform basic activities of daily living, or recognise close family members). Similarly, a person may state in their advance directive that they would not want resuscitating treatment if such treatment would return them to a low level of functioning where they were incapable of looking after themselves or would have limited cognitive capacities.

It is wise for people to make advance directives with their general practitioners or other treating doctors or nurses while they still have capacity and are stable medically and not acutely unwell.

13.6.4.2 Who has the burden of proving the maker had the capacity to make the advance directive?

If the maker's capacity to make the advance directive that has been produced to be acted upon has not been challenged, and there are no grounds for suspicion about its validity, the advance directive should be acted upon without further ado. However, if it has been challenged or there are grounds for concern about its validity, then the responsibility for proving its validity is on the person claiming its validity. Further, as Munby J has pointed out, the burden of proof is on those who seek to establish the existence, the continuing validity or the applicability of an advance directive.(298)

13.6.4.3 The standard of proof

Stewart suggests that in the United States of America the courts have required a higher standard of proof than the balance of probabilities when "satisfying themselves of the veracity of anticipatory decisions to refuse treatment". These standards have been stated as the "clear and convincing" standard or the "clear, strong and cogent" standard.(299) In relation to the standard of proof in England that applies not only to the maker's capacity at the time they made their advance directive but also to establish the existence, the continuing validity or the applicability of that advance directive, Munby J has said:

Clear and convincing proof is required. I do not suggest that anything more than the usual civil standard of proof on a balance of probability is required. But the more extreme the gravity of the matter in issue so, as it seems to me, the stronger and more cogent must the evidence be.(300)

In Australia the issue of the standard of proof required in civil matters was settled in 1938 and is encapsulated in Dixon J's often quoted statement that:

The truth is that, when the law requires the proof of any fact, the tribunal must feel an actual persuasion of its occurrence or existence before it can be found. It cannot be found as a result of a mere mechanical comparison of probabilities independently of any belief in its reality. No doubt an opinion that a state of facts exists may be held according to indefinite gradations of certainty; and this has led to attempts to define exactly the certainty required by the law for various purposes. Fortunately, however, at common law no third standard of persuasion was definitely developed. Except upon criminal issues to be proved by the prosecution, it is enough that the affirmative of an allegation is made out to the reasonable satisfaction of the tribunal. But reasonable satisfaction is not a state of mind that is attained or established independently of the nature and consequence of the fact or facts to be proved. The seriousness of an allegation made, the inherent unlikelihood of an occurrence of a given description, or the gravity of the consequences flowing from a particular finding are considerations which must affect the answer to the question whether the issue has been proved to the reasonable satisfaction of the tribunal. In such matters "reasonable satisfaction" should not be produced by inexact proofs, indefinite testimony, or indirect inferences.(301)

In HE v Hospital NHS Trust, Munby J summarised the relevant English law into a series of propositions two of which were:

Where life is at stake the evidence must be scrutinised with especial care. Clear and convincing proof is required. The continuing validity and applicability of the advance directive must be clearly established by convincing and inherently reliable evidence.(302). If there is doubt that doubt falls to be resolved in favour of the preservation of life.

This perspective on the civil standard of proof opens up the possibility that the requirement of reasonable satisfaction in relation to an advance directive dealing with treatment and care at the end of life may require a greater degree of cogent and reliable evidence than an advance directive dealing only with other personal decisions.

13.6.4.4 Advance directive must have currency

While advance directives prepared a long time before they are used are binding if they were made when the maker was competent, it is nevertheless wise for makers to review and reconfirm (or change) their advance directives, particularly if the circumstances of their health and cognitive and physical capacities have changed.

While the principle that current advance directives are binding appears clear, the question of whether an advance directive remains current can be a difficult one in practice. In May 2003 Munby J dealt with an urgent application relating to a 24 year old woman, AE, who had been brought up as a Muslim, but who had become a Jehovah's Witness when her mother had become one. In February 2001 AE signed an advance directive clearly indicating that she did not want to be treated with blood or blood products. In April 2003 she was rushed to hospital seriously ill and stated that she did not want to die. By early May a blood transfusion was seen as essential to prolong her life. Her mother and brother opposed the blood transfusion while her father pressed for it to be given as soon as possible. Munby J held that AE's advance directive was no longer current because, on the evidence before him, AE had abandoned her faith as a Jehovah's Witness, given up its practice and reverted to being a Muslim.(303) He then made a declaration allowing the blood transfusion to take place, at the discretion of AE's treating doctors, on best interests grounds.(304)

In a 2004 a man's treating doctors and the then Guardianship Tribunal of New South Wales (now NCAT) were faced with a similar question, but different facts. The Tribunal decided to consent to an application for a blood transfusion to be given to AF, who was the only member of his family who was a Jehovah's Witness. The Tribunal accepted that he had signed an advance directive in the form of a "no transfusion card" or "blood card" in 2003 and may have signed others as well. There was no current card signed by him. Also, there was evidence that recently, when he had been asked, he had indicated that he wanted a blood transfusion. In addition, there was conflicting evidence about how closely he adhered to other tenets of the Jehovah's Witnesses.(305) Stewart has criticized the Tribunal's decision.(306)

This question of advance directives and blood transfusions is also discussed in Chapter 12.13.1.

For a case in which a person's advance directive was held not to have become operative for statutory reasons see, Wright v Johns Hopkins Health Systems Corporation.(307)

13.6.4.5 Advance directive must have been made free from undue influence

The English Court of Appeal case, In re T, is seen as the leading case on undue influence and advance directives.(308) That case involved a finding that a pregnant woman admitted to hospital after a motor vehicle accident had refused blood products as a result of undue influence exerted by her mother who was a Jehovah's Witness. Lord Donaldson MR noted that patients in hospitals were entitled to seek and receive advice and assistance from others, particularly family members when making a decision. It is acceptable that a patient be persuaded by others of the merits of a particular decision, even by strong persuasion. The key thing is that the decision is the patient's decision and not the result of them being overborne. Lord Donaldson MR then noted matters that were relevant when considering the effect of outside influences. These were:
  1. The strength of will of the patient. A patient who is very tired, in pain or depressed will be less able to resist being overborne than one who is rested, free from pain and cheerful;
  2. The relationship of the "persuader" to the patient - the influence of parents on their children or of one spouse on another can be stronger than in the case of other relationships;
  3. Persuasion based on religious beliefs can be compelling particularly if the arguments based on those beliefs are being used by someone in a very close relationship with the patient.(309)
These matters should alert doctors to the possibility that the patient's capacity to decide is being overborne and that the patient may not mean what they say. But the existence of any of these matters does not necessarily mean that the person is being influenced unduly.

Nevertheless, as Darzins and others warn, some older persons who feel they are an emotional or financial burden to their families or society might make choices to accommodate the expectations of others. Some may feel they have an obligation to agree with choices family members or other authority figures such as doctors may make for them and may feel uncomfortable making their wishes known.(310) Darzins and others also caution that when advance directives are offered in institutional settings or appear to be prepared primarily at the request of interested third parties there is a possibility that they are being made because of coercion rather than free will and that:

In such settings the whole exercise, not just the willingness of the people to have their capacity assessed, must be questioned.(311)

13.6.5 If an advance directive requests certain treatment, must doctors carry out that treatment?

In 2004 in the English Queens Bench Division a Mr Burke obtained a set of declarations, the first of which was:

Any decision by (Mr Burke) while competent, or contained in a valid advance directive, that he requires to be provided with artificial nutrition and hydration is determinative that such provision is in the best interests of the claimant at least in circumstances where death is not imminent and the claimant is not comatose.(312)

The Court of Appeal unanimously set aside these declarations and then went on to note that the common law did not require a doctor to provide treatment to a patient that the patient demanded or requested, or to procure another doctor to provide such treatment, when the doctor believed that the treatment was not clinically indicated. The Court of Appeal then endorsed the following propositions submitted to it by the General Medical Council, the organisation which registers doctors to practise in the United Kingdom:
  1. The doctor, exercising his professional clinical judgment, decides what treatment options are clinically indicated (i.e. will provide overall clinical benefit) for his patient.
  2. He then offers those treatment options to the patient in the course of which he explains to him/her the risks, benefits, side effects, etc. involved in each of the treatment options.
  3. The patient then decides whether he wishes to accept any of those treatment options and, if so, which one. In the vast majority of cases he will, of course, decide which treatment option he considers to be in his best interests and, in doing so, he will or may take into account other, non clinical, factors. However, he can, if he wishes, decide to accept (or refuse) the treatment option on the basis of reasons which are irrational or for no reasons at all.
  4. If he chooses one of the treatment options offered to him, the doctor will then proceed to provide it.
  5. If, however, he refuses all of the treatment options offered to him and instead informs the doctor that he wants a form of treatment which the doctor has not offered him, the doctor will, no doubt, discuss that form of treatment with him (assuming that it is a form of treatment known to him) but if the doctor concludes that this treatment is not clinically indicated he is not required (i.e. he is under no legal obligation) to provide it to the patient although he should offer to arrange a second opinion.(313)
The final proposition, namely that if the doctor concludes that treatment demanded or requested by a patient is not clinically indicated, the doctor is not required to provide it to the patient although the doctor should offer to arrange a second opinion, is consistent with the established law in Australia. In 2000 O'Keefe J has noted that there is undoubted jurisdiction in the Supreme Court of New South Wales to act to protect the right of an unconscious person to receive ordinary reasonable and appropriate - as opposed to extra-ordinary, excessively burdensome, intrusive or futile - medical treatment, sustenance and support.(314) As discussed in Chapter 12, in 2004 Howie J of the same court applied the same approach and allowed medical treatment that a person's family wanted continued to be withdrawn by the doctors because the treatment was futile, burdensome and, to a degree, intrusive and it could not be said the withdrawal of the treatment was not in the best interests of the person.(315)

Notes

1 : Using Advance Care Directives (NSW), NSW Dept of Health, 2005, www.nsw.health.gov.au. Doc GL2005_056 and Guidelines for end of life care & decision-making Doc GL2005_057; Advance Planning for Quality Care at the End of Life and Dignity, Respect and Choice: Planning for End of Life. See also Respecting Patient Choices Program, www.respectingpatientchoices.org.au.

2 : http://www0.health.nsw.gov.au/policies/gl/2005/pdf/GL2005_057.pdf

3 : http://www.achs.org.au/programs-service/-national-safety- and-quality-heath-service-standards- (nsqhss)

4 : Hunter and New England Area Health Service v A [2009] NSWSC 761.

5 : Medical Treatment Act 1988 (Vic) s 4; Medical Treatment (Health Directions) Act 2006 (ACT) s 6(1); Powers of Attorney Act 1998 (Qld) s 39 and Guardianship and Administration Act 1990 (WA) s 110ZB.

6 : Alzheimer's Society Factsheet Future medical treatment: advance statements and advance directives or living wills, www.alzheimers.org.uk. See also Alzheimer's Australia Position Paper No.5 Legal Planning and Dementia, www.alzheimers.org.au.

7 : See for example, Liang, B A, Health Law and Policy, Boston, Butterworth Heinemann, 2000, 273; Urofsky, op cit (footnote 5) 134.

8 : NSW Department of Health Using advance care directives (NSW) (2005), GL2005- 056.NSW Department of Health: North Sydney: 1.

9 : Ibid. pp 7 and 8. See also, Gillick MR. "The use of advance care planning to guide decisions about artificial nutrition and hydration". Nutr Clin Pract. (2006) 21(2):126-33.

10 : BMA Consent tool kit, card 9 - Advance statements. See, http//www.bma.org.uk/ap.nsf/Content/Simple+Search+Results+Page?OpenDocument&FreeText=advance%20statements.

11 : United States President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioural Research, Making Health Care Decisions, Washington, US Government Printing Office, 1982, 156-157. See also Alzheimer's Australia Discussion Paper 8 Decision making in advance: Reducing barriers and improving access to advance directives for people with dementia, May 2006, www.alzheimers.org.au.

12 : Guardianship Act 1987 (NSW) s 6E(3); Guardianship and Administration Act 1993 (SA) s 25(5) and Guardianship and Administration Act 1995 (Tas) s 32(5) and (6).

13 : Guardianship Act 1987 (NSW), Guardianship and Administration Act 1995 (Tas) and Guardianship and Administration Act 1990 (WA) (s 110G(4).

14 : Powers of Attorney Act 1998 (Qld), s 32 and Sch 2 ss 2, 4 and 5, Powers of Attorney Act 2006 (ACT) and Powers of Attorney Act 2014 (Vic) s. 22.

15 : Sommerville, A "Rememberence of conversations past: oral advance statements about medical treatment" BMJ 1995; 310: 1663-1665, p 1664.

16 : 110 S.Ct. 2841, 2857 (1990). See also Sommerville, op cit (footnote 8) 1665.

17 : http://www0.health.nsw.gov.au/policies/pd/2014/pdf/PD2014_030.pdf

18 : Ibid.

19 : Brown B.A. (2003) The history of advance directives Journal of Gerontological Nursing 29 (9): 4-14.

20 : Fagerlin A Schneider CE (2004) Enough, The failure of the living will. Hastings Centre Reports. 34(2):30-42.; see also Taylor DMcD., Cameron P.A. (2002) Advance care planning in Australia: overdue for improvement Internal Medical Journal 32: 475-480.

21 : Hickey DP. The disutility of advance directives: we know the problems, but are there solutions? J Health Law. 2003 Summer;36(3):455-73.

22 : Fagerlin A Schneider CE (2004) Enough, The failure of the living will. Hastings Centre Reports. 34(2):30-42.

23 : Ibid.

24 : Cheang F, Finnegan T, Stewart C, Hession A, Clayton JM (2014) Single-centre cross-sectional analysis of advance care planning among elderly inpatients. Intern Med J. 44(10):967-74.

25 : Ibid, p 7

26 : Conflict Resolution in End of Life Settings (CRELS) (2010) Research, Ethics & Public Health Training Branch Population Health Division NSW Department of Health: NSW Department of Health, http://www.health.nsw.gov.au/patients/acp/Publications/conflict-resolution.pdf

27 : NSW Department of Health op cit, p 2.

28 : Taylor DMcD., Cameron P.A. (2002) Advance care planning in Australia: overdue for improvement Internal Medical Journal 32: 475-480.

29 : Ibid.

30 : Clayton J.M. Hancock K.M Butow PN., Tattersall Currow D.C. (2007) Clinical Practice Guidelines for communicating prognosis and end of life issues with adults in the advanced stages of a life-limiting illness, and their caregivers Medical Journal Australia 186: s77- s108.

31 : Fagerlin A Schneider CE (2004) Enough, The failure of the living will. Hastings Centre Reports. 34(2):30-42.

32 : Gedge E. B."Collective moral imagination: making decisions for person with dementia" J Med Philosophy (2004) 29,4, p 436.

33 : Meeker MA, Jezewski MA "Family decision making at end of life". Palliat Support Care. 2005 3(2):131-42. Shalowitz DA, Garrett-Mayer E, Wendler D. "The accuracy of surrogate decision makers: a systematic review". Arch Intern Med. (2006) 13;166(5):493-7. Miura Y, Asai A, Matsushima M, Nagata S, "Families' and physicians' predictions of dialysis patients' preferences regarding life-sustaining treatments in Japan." Am J Kidney Dis. 2006 Jan; 47(1):122-30. Tang ST, Liu TW, Lai MS, Liu LN, Chen CH. "Concordance of preferences for end-of-life care between terminally ill cancer patients and their family caregivers in Taiwan".J Pain Symptom Manage. (2005) 30(6):510-8.

34 : Brudney D. (2009) Choosing for another: beyond autonomy and best interests. Hastings Center Report 39: 31-37.

35 : Davis, J.K. (2002) "The concept of precedent autonomy" Bioethics 2002; 16:114-133.

36 : Gedge E. B. "Collective moral imagination: making decisions for person with dementia" J Med Philosophy (2004) 29,4, :435-450.

37 : Fagerlin A Schneider CE (2004) Enough, The failure of the living will. Hastings Centre Reports. 34(2):30-42.

38 : Ambrose M. Capacity Assessment for making and Advance Health Directive: the Role of a Neuropsychologist In : Collier B., Coyne C., Sullivan K., (Ed) Mental Capacity: Powers of Attorney and Advance Health Directives (2005) Federation Press, 146-7.

39 : Hertogh CMPM. End-of-life care and medical decision making in patients with dementia. In: Burns A (ed) Standards in dementia care - European Dementia Consensus Network (EDCON), London/New York, Taylor & Francis, 2005, 339-54.

40 : Degrazia, D. "Advance directives, dementia, and the 'someone else problem'.", (1999) Bioethics Vol 13 no 5, 373, 375.

41 : Ibid 378.

42 : Ibid 376.

43 : Treloar A "Advance directives: Limitations upon their applicability in elderly care" International Journal Geriatric Psychiatry (1999) 14, 1039-1043. p 1040.

44 : Rapkin BD, Schwartz CE. Toward a theoretical model of quality-of-life appraisal: implications of findings from studies of response shift. Health and quality of life outrcomes 2004; 2: 14. Hertogh CMPM. End-of-life care and medical decision making in patients with dementia. In: Burns A (ed) Standards in dementia care - European Dementia Consensus Network (EDCON), London/New York, Taylor & Francis, 2005, 339-54. Ubel PA, Loewenstein G, Schwarz N, Smith D."Misimagining the unimaginable: the disability paradox and health care decision making" Health Psychol. (2005) 24 (4 Suppl):S57-62.

45 : Kutner JS, Nowels DE, Kassner CT, Houser J, Bryant LL, Main DS "Confirmation of the "disability paradox" among hospice patients: preservation of quality of life despite physical ailments and psychosocial concerns." Palliat Support Care. (2003) 1(3):231-7.

46 : Ryan, C J. "Betting on your life: An argument against certain advance directives", (1996) Journal of Medical Ethics Vol 22 no 2, 95, 96. See also Hope, T. "Advance directives", (1996) Journal of Medical Ethics Vol 22 no 2, 67.

47 : Sehgal, A, Galbraith, A, Chesney, M, Schoenfeld, P, Charles, G and Lo, Bernard. "How strictly do dialysis patients want their advance directives followed?", (1992) JAMA Vol 267 no 1, 59.

48 : Sahm S, Will R Hommel G. Would they follow what has been laid down? Cancer patients' and healthy controls' views on adherence to advance directives compared to medical staff Medical Health Care Philosophy 2005 8, 297-305, p 297.

49 : Lee, M A, Smith, D M, Fenn, D S and Ganzini, L. "Do patients' treatment decisions match advance statements of their preferences", (1998) The Journal of Clinical Ethics Vol 9 no 3 258, 262.

50 : Coppola, K M, Bookwala, J, Ditto, P H, Lockhart, L K, Danks, J H and Smucker, W D. "Elderly adults' preferences for life-sustaining treatments: the role of impairment, prognosis and pain", (1999) Death Studies Vol 23 no 7, 617. See also, Thompson, T, Barbour, R and Schwartz, L. "Adherence to advance directives in critical care decision-making: vignette study", (2003) BMJ Vol 327, 1011.

51 : Winzelberg GS, Hanson L, Tulsky JA. "Beyond autonomy: diversifying end-of-life decision-making approaches to serve patients and families" J Am Geriatr Soc (2005) 53, 1046-150.

52 : Crugel M, Treloar A, Euba R (2008) The misuse of autonomy in ethical decision-making-time for a change? International Psychogeriatrics, 20 (1): 201-3.

53 : Treloar A "Advance directives: Limitations upon their applicability in elderly care" International Journal Geriatric Psychiatry (1999) 14, 1039-1043. p 1039.

54 : Paul Biegler, Cameron Stewart, Julian Savulescu and Loane Skene "Determining the validity of advance directives." MJA 2000; 172: 545-548, p546.

55 : Ibid., p 1041.

56 : Hertogh CMPM. End-of-life care and medical decision making in patients with dementia. In: Burns A (ed) Standards in dementia care - European Dementia Consensus Network (EDCON), London/New York, Taylor & Francis, 2005, 339-54.

57 : De Boer ME., Hertogh CM Droes RM., Jonker C. Eefsting J.A. (2010) Advance Directives in dementia: issues of validity and effectiveness International Psychogeriatrics 22(2):201-8.

58 : De Boer ME., Hertogh CM Droes RM., Riphagen II, Jonker C. Eefsting J.A. (2007) Suffering from dementia- the patient's perspective: a review of the literature International Psychogeriatrics 19(6):1021-39

59 : Woods B Pratt R. "Awareness in dementia Ethical and legal issues in relation to people with dementia" Aging and mental health (2005) 9, 423-429.. p 425.

60 : Dworkin R, Life's Dominion (1993) New York Alfred AKnopf. p 218-237.

61 : Harvey M. "Advance directives and the severely demented" Journal of Medicine and Philosophy (2006) 31, 47-64., p52

62 : Dresser R. "Dworkin on dementia. Elegant theory questionable practice" Hastings Centre Report (1995) 32-38, p 34.

63 : Harvey M "Advance directives and the severely demented" Journal of Medicine and Philosophy (2006) 31, 47-64., p 61.

64 : The Role of the Medical Practitioner in Advance Care Planning - 2006; http://www.ama.com.au/node/2428, 1.1-1.4.

65 : The Role of the Medical Practitioner in Advance Care Planning - 2006, http://www.ama.com.au/node/2428, 1.1-1.4.

66 : Willmott, L, White, B, Howard, M, "Refusing Advance Refusals: Advance Directives and Life-Sustaining Medical Treatment" [2006] MelbULawRw 7; (2006) 30 MULR 211, 238.

67 : Parker, M, Stewart,C, Willmott,L and Cartwright, C, "Two steps forward, one step back: advance care planning, Australian regulatory frameworks and the Australian Medical Association", Internal Medicine Journal 37 (2007) 637, 642.

68 : Cartwright, C White B., Willmott,L., Williams G. and Parker MH. (2016) Palliative care and other physicians' knowledge, attitudes and practice relating to the law on withholding/withdrawing life-sustaining treatment: Survey results Palliative Medicine 30(2): 171-9, 171.

69 : White B., Willmott,L., Cartwright, C Parker MH. and Williams G. (2014) Doctors knowledge of the Law on withholding and withdrawing life-sustaining medical treatment Med J Australia 201(4): 229-32.

70 : Report upon the Inquiry into Options for Dying with Dignity, Social Development Committee, Victorian Parliament, 1987.

71 : Ibid. (v) - (ix).

72 : Victoria Parliament, Parliamentary Debates, Legislative Council, 23 March 1988, 296 and 332.

73 : Victoria Parliament, Parliamentary Debates, Legislative Assembly, 6 May 1988, 2243-2244.

74 : Ibid. 2249. As to these arguments see, Magnusson, R, Angels of Death Exploring the Euthanasia Underground, Melbourne, Melbourne University Press, 2002, at p 47 and surrounding pages.

75 : Ibid. 2168. The Government also claimed the support of the Synod of the Anglican Church, the Salvation Army and the Catholic Health Services for its Bill (No.2); see, Victoria Parliament, Parliamentary Debates, Legislative Council, 23 March 1988, 335-336. Note also the Report upon the Inquiry into Options for Dying with Dignity, Social Development Committee, Victorian Parliament, 1987, 91.

76 : For other descriptions of the history of the Medical Treatment Act 1988 (Vic) see, Gardner re BWV [2003] VSC 173, [45]-[71] and Porter, D "Advance directives and the persistent vegetative state in Victoria: A human rights perspective" (2005) 13 JLM 256, 261-262.

77 : Northern Territory Legislative Assembly Parliamentary Record, 5th Assembly, 1st Session,, 17 August 1988, 3537 and 11October 1988 4404-4420.

78 : Ibid. 11 October 1988, 4405.

79 : South Australia, Parliament, Parliamentary Debates, House of Assembly, Wed. 30 November 1994, 1350.

80 : Ibid. 989.

81 : ACT Legislative Assembly Debates (Hansard), 21 April 1994, 1124.

82 : Ibid. 14 September 1994, 2874.

83 : Ibid. 2878.

84 : Ibid. 2878 and 2879.

85 : Powers of Attorney Act 2006 (ACT) s 13.

86 : Hansard of the ACT Legislative Assembly, 21 Sept. 2006, p 3010 and 21 Nov 2006, p 3672.

87 : Queensland Law Reform Commission, Assisted and Substituted Decisions, Report No 49, June 1996, Ch. 10 and Appendix B.

88 : Powers of Attorney Act 1998 (Qld), Ch.3 Part 3. See also, the Queensland Department of Justice's website, www.justice.qld.gov.au/guardian, and search for advance health directive.

89 : Queensland Parliamentary Debates , seriatim, 8 October 1997 to 12 May 1998.

90 : Acts Amendment (Advance Health Care Planning) Bill 2006 (WA).

91 : Law Reform Commission of Western Australia, "Medical Treatment for the Dying", Report of Project No 84, 1991, 6.

92 : Ibid. 9.

93 : Legislative Assembly of Western Australia Hansard for 21 June 2006.

94 : See for example, Legislative Council of Western Australia Hansard for 15 August 2008, pp 4069-4088.

95 : Medical Treatment Act 1988 (Vic) s 1.

96 : Ibid. s 5(1).

97 : Ibid. s 3. The power of attorney must be in the form set out in Schedule 2 of the Medical Treatment Act 1988 (Vic).

98 : Ibid. s 5B(1).

99 : Ibid. s 5B(2).

100 : For a different view of the operation of s 5B(2) of the Medical Treatment Act 1988 (Vic) see Porter D, op. Cit. (footnote 55), 264-266.

101 : Ibid. s 5B(2) and Schedule 3.

102 : Ibid. s 5C.

103 : Ibid s 5C(3) and (4).

104 : Ibid. s 5D(1).

105 : Ibid. s 5E

106 : Ibid. ss 6 and 9.

107 : Ibid. s 1.

108 : Re BWV; Ex parte Gardner [2003] VSC 173, 7 VR 487, [84]-[87] and [91].

109 : See Medical Treatment Act 1988 (Vic) generally. For another description of the Act and how it operates see, Porter, D. op. cit. (footnote 55).

110 : Porter, D. op. cit. (footnote 55) 259-260. For the Medical Treatment Act 1988 (Vic) in action, see Brown, m and others, "Advance directives in action in regional palliative care service: "Road testing" the provisions of the Medical Treatment Act 1988 (Vic)" (2005) 13 JLM 186.

111 : Advance Personal Planning Act (NT) ss. 4 and 8(1).

112 : Ibid. s. 6(1).

113 : Ibid. s. 6(2).

114 : Ibid. ss 3 and 16(1)(a).

115 : Ibid. s 15.

116 : Ibid. s 8.

117 : Ibid. s 20(2).

118 : Ibid. s 18.

119 : Ibid. s 59.

120 : Ibid. s 21(1).

121 : Ibid. ss 21(2) and 59(2)(b).

122 : The definition covers a wide range of treatments, far, far wider than just medical or dental treatments. The final source of the definition is the Health Practitioner Regulation National Law which is the Schedule to the Health Practitioner Regulation National Law 2009 (Qld). S. 5 of that Law names the health professions recognised under it. These are: Aboriginal and Torres Strait Islander health practice; (b) Chinese medicine; (c) chiropractic; (d) dental (including the profession of a dentist, dental therapist, dental hygienist, dental prosthetist and oral health therapist); (e) medical; (f) medical radiation practice; (g) nursing and midwifery; (h) occupational therapy; (i) optometry; (j) osteopathy; (k) pharmacy (l) physiotherapy; (m) podiatry; (n) psychology. It is hard to avoid accepting that "health care of any kind" includes health care services provided by members of any of those professions and accepted the relevant profession as health care. Then add in the services offered by the following services: services provided by registered health practitioners; (b) hospital services; (c) mental health services; (d) pharmaceutical services; (e) ambulance services; (f) community health services; (g) health education services; (h) welfare services necessary to implement any services referred to in paragraphs (a) to (g); (i) services provided by dietitians, masseurs, naturopaths, social workers, speech pathologists, audiologists or audiometrists; (j) pathology services. Many of those services are not provided by health practitioners registered under the Law.

123 : Advance Personal Planning Act (NT) s. 3.

124 : Ibid. s. 38.

125 : Ibid. s. 41(1).

126 : Ibid. s. 41(2) and (3).

127 : Ibid. ss. 3 and 41(4).

128 : Ibid s. 22.

129 : Ibid s 43.

130 : Advance Care Directives Act 2013 (SA) ss 11and 21-23.

131 : Advance Care Directives Act 2013 (SA) s 34.

132 : Ibid. s 45(5)(a)(iii).

133 : Ibid. s. 19.

134 : Ibid. s. 12 sets out the kinds of provisions that cannot be included in an advance care directive and also includes a provision that would, if given effect to, cause a health practitioner or other person to contravene a professional standard or code of conduct (however described) applying to the health practitioner or person. The section also precludes a provision that comprises a refusal of mandatory medical treatment or any other provision of a kind declared by the regulations to be within the ambit of this section. The Advance Care Directive Regulations 2014 (SA), reg. 6 makes the following mandatory medical treatment: - medical treatment ordered by a court; - medical treatment of a kind contemplated by section 56 or 57 of the Mental Health Act 2009 (SA) and medical treatment that is the subject of a requirement or direction (however described) of the Chief Public Health Officer under the South Australian Public Health Act 2011.

135 : Ibid. ss. 10 and 36(1).

136 : Ibid ss 3 and 4.

137 : Ibid. s. 3; Health Practitioner Regulation National Law (South Australia) Sch. 2, cl. 5 and Advance Care Directive Regulations 2014 (SA) reg. 4.

138 : Advance Care Directives Act 2013 (SA) ss 34(2) and 36(1).

139 : Ibid. s. 36(2).

140 : See Chapter 12. 5. See also the note to s. 36(2) of the Advance Care Directives Act 2013 (SA).

141 : Advance Care Directives Act 2013 (SA) s. 36(3).

142 : Ibid. s. 36(4) and the Example in it.

143 : Ibid. s. 6(1)

144 : Ibid. s. 37.

145 : Ibid. s. 6(2).

146 : Ibid. s. 36(1)(c) and (d). For the principles of the Act see, s.10.

147 : Ibid. s. 10(b).

148 : Ibid. s 36(1) (a) to (e) and (5).

149 : See, the Health Practitioner Regulation National Law (South Australia) Act 2010 and the Health Practitioner National Law (South Australia).

150 : Advance Care Directives Act 2013 (SA) s 35(1).

151 : Ibid. Part 7.

152 : Ibid. s.44.

153 : Ibid. s. 45(1).

154 : Ibid. s. 45(2) and (3).

155 : Ibid. s. 45(4).

156 : Ibid. s. 45(5)(a). Note that as at 27-5-2016, no regulation had been made prescribing any further declaration.

157 : Ibid. s.45(5)(b) and 45(6).

158 : Ibid. s. 43.

159 : Ibid. s. 45(7).

160 : Ibid. s. 45(11).

161 : Ibid. s. 47(a). Note that as SACAT is a tribunal exercising some of judicial power of the State of South Australia, so it not inappropriate to describe the powers and functions given to it as its "jurisdiction".

162 : Ibid. s. 48(1)(a), (2)(a) and (3)(a).

163 : Ibid. s. 48(1)(b), (2)(b), (3)(b) and (4).

164 : Ibid. s. 51.

165 : Ibid. s. 43.

166 : Ibid. ss. 45 and 48(3)(a).

167 : Ibid. s. 48(3)(b)(i).

168 : Ibid. s. 48(3)(b)(ii). However, the note to s. 48(3)(b)(ii) reminds us that, under s.6, SACAT cannot compel a health practitioner to provide particular health care to a patient. As to the obligations of health practitioners in relation to binding and non-binding provisions about health care in advance care directives see, 13. 5. 3. 6, above.

169 : Ibid. s. 48(3)(b)(iii).

170 : Ibid. s. 46. As noted earlier, the Public Advocate may refuse to determine an application for a declaration or advice if, in the opinion of the Public Advocate, it is more appropriate that the matter be dealt with by SACAT. Note also that the Public Advocate does not have power to refer the matter to SACAT. That is a matter for the applicant to consider and take the action they consider appropriate. See, Ibid. s. 45(7).

171 : Ibid. s. 43(a) to (d).

172 : As at 31-5-2016 no regulation had been made about this matter.

173 : Advance Care Directives Act 2013 (SA) s.51(1).

174 : Ibid. s. 51(2).

175 : Ibid. s. 51(5).

176 : Ibid. s. 51(5). See Note to this subsection. See also Part 4 Division 2 of the Guardianship and Administration Act 1993 (SA).

177 : Ibid. s. 52.

178 : Medical Treatment (Health Directions) Act 2006 (ACT) s 7.

179 : Ibid. s 10.

180 : Ibid. s 8(a). The Minister has approved a form under s 21 of the Act and this form has been published in the ACT legislation register, www.legislation.act.gov.au.

181 : Ibid. s 7(b) and (c).

182 : Ibid. s 9.

183 : Ibid. s 11(1) and(2).

184 : Ibid. s 11(3).

185 : See Thorpe J's test in Re C [1994] 1 All ER 819, 822.

186 : Medical Treatment (Health Directions) Act 2006 (ACT) s 12.

187 : Ibid. s 18.

188 : Ibid. s 19.

189 : Powers of Attorney Act 2006 (ACT) ss 12 and 13.

190 : Ibid. Schedule 1.11.

191 : The Margaret Mitchell (1858) 166 ER 1174 and Dynayski v Grant [2004] NSWSC 1187. See also Hunter and New England Area Health Service v A [2009] NSWSC 761.

192 : Medical Treatment (Health Directions) Act 2006 (ACT) s 6(2) and Dictionary. As to the meaning of "the reasonable provision of food and water", see Re BWV; Ex parte Gardner [2003] VSC 173, 7 VR 487, [82]-[91].

193 : Ibid. s 17.

194 : Ibid. ss 13 and 14.

195 : Ibid. s 16.

196 : Ibid. s 15.

197 : Powers of Attorney Act 1998 (Qld), Chapter 3 Parts 3 and 4 and the Guardianship and Administration Act 2000 (Qld) Chapter 5 Parts 2 and 3 and Schedules 1, 2 and 4.

198 : Powers of Attorney Act 1998 (Qld), s 35(1)(a).

199 : Ibid. Sch 2 s 7.

200 : Ibid. Sch 2 s 5.

201 : Ibid. s. 35(2)(b).

202 : Ibid. Sch 2 s 5A.

203 : Ibid. s 35(1)(b), (c) and (d).

204 : Ibid. ss. 44(2) and 161. The approved form was published in the Queensland Government Gazette 9 January 2004, p 65. It can be found through the Queensland Department of Justice website, www.justice.qld.gov.au. Found on 1-6-16 at: http://www.justice.qld.gov.au/__data/assets/pdf_file/0007/15982/advance-health-directive.pdf

205 : Ibid. s 36(1)(a) and Sch 3.

206 : Ibid. s 36(2)(a).

207 : Ibid .s 36(2)(b) and (c) and Sch 2 ss 4 and 5 and Sch 3..

208 : Ibid. s 35(1)(c) and 36(4).

209 : For the test for capacity to make an advance health directive see, Powers of Attorney Act 1998 (Qld), s 42 and for the test for capacity to make an enduring power of attorney see, s 41.

210 : Guardianship and Administration Act 2000 (Qld), s 66(2).

211 : Ibid. s 63A(1). This provision may be intended to overcome some of the difficulties encountered in NSW that led to the Supreme Court cases Northridge v Central Sydney Area Health Service [2000] NSWSC 1241, 50 NSWLR 549 and Isaac Messiha (by his tutor Magdy Messiha) v South East Health [2004] NSWSC 1061.

212 : Ibid. s 63A(2). The question of objection is dealt with in s 67 of the Act.

213 : Ibid. s 63A(3).

214 : See s 66(2) and 66B of the Guardianship and Administration Act 2000 (Qld) and s 36 of the Powers of Attorney Act 1998 (Qld).

215 : Guardianship and Administration Act 2000 (Qld), s 79.

216 : Guardianship and Administration Act 1990 (WA), s 110ZB.

217 : Ibid. s 110P.

218 : Ibid. s 3(1).

219 : Ibid. s 110Q(1)(a). For the advance health directive form, see Guardianship and Administration Regulations 2005 (WA) Schedule 2.

220 : Ibid ss 100P and 110R.

221 : Ibid. s 110Q.

222 : Ibid. s 110RA which was stated to be not in force 30-11-2015. No indication it had come into force 1-6-16.

223 : Ibid. s 110S(1) and (2).

224 : Ibid. s 110S(3).

225 : Ibid. s 110S(4).

226 : Ibid. s 110S(5). Note that who qualifies as a person's "person responsible" is set out at Chapter 12.8.4.

227 : Ibid. s 110W.

228 : Ibid. s 110S(6).

229 : Ibid. s 110P.

230 : Ibid. s 110ZJ.

231 : Ibid. s 110T. Enduring powers of guardianship are dealt with in Part 9A of the Guardianship and Administration Act 1990 (WA). See Chapter 9.

232 : Ibid. s 110V.

233 : Ibid. s 110X.

234 : Ibid. s 110Y.

235 : Ibid. s 110Z.

236 : Ibid. s 110ZA. This provision does not appear to be limited to the other Australian States and the Territories.

237 : Rao JK, Alongi J, Anderson LA, Jenkins L, Stokes GA, Kane M. "Development of public health priorities for end-of-life initiatives" Am J Prev Med. (2005) 29, 5:453-60.

238 : Ibid., 6

239 : Respecting Patient Choices Program, www.respectingpatientchoices.org.au; see also http://advancecareplanning.org.au/.

240 : Advance Personal Planning Act (NT) s.55.

241 : Powers of Attorney Act 1998 (Qld) s 39.

242 : Medical Treatment Act 1988 (Vic) s 4 and Medical Treatment Act 1994 (ACT) s 5.

243 : Guardianship and Administration Act 1990 (WA) s 110ZB.

244 : NSW Department of Health, "Using Advance Care Directives" http://www0.health.nsw.gov.au/policies/gl/2005/pdf/GL2005_056.pdf

245 : Ibid., p 5.

246 : Ibid. p 9.

247 : See for example, Stewart, C "Advance directives: Disputes and dilemmas" in Freckelton, I and Petersen, K, Disputes & Dilemmas, Sydney, Federation Press, 2006.

248 : NSW Department of Health op cit (footnote 210) p 10.

249 : Guardianship Act 1987 (NSW), Guardianship and Administration Act 1995 (Tas) and Guardianship and Administration Act 1990 (WA).

250 : Powers of Attorney Act 1998 (Qld), s 32 and Sch 2 ss 2, 4 and 5.

251 : Guardianship Act 1987 (NSW) s 6E(3).

252 : Guardianship and Administration Act 1995 (Tas) s 32(5) and (6).

253 : Guardianship and Administration Act 1990 (WA) s 110G(4).

254 : [2009] NSWSC 761 [36]-[37].

255 : HE v Hospital NHA Trust [2003] EWHC 1017 (Fam), [33].

256 : Ibid. [34].

257 : In NSW solicitors, barristers, registrars of Local Courts, overseas-registered foreign lawyers and persons employed, in a Division of the Government Service, to enable the NSW Trustee and Guardian or the Office of the Public Guardian to exercise its functions, who has completed an approved course of study, and have been approved by the Chief Executive Officer of the NSW Trustee and Guardian as eligible witnesses may witness the signing appointments of enduring guardians, see Guardianship Act 1987 (NSW) s 5 and Guardianship Regulation 2010 (NSW) cl 4. In Tasmania any adult who is neither a party nor a relative of a party may witness the signing of such appointments, see Guardianship and Administration Act 1995 (Tas) ss 32(2)(c) and Sch. 3.

258 : HE v Hospital NHA Trust [2003] EWHC 1017 (Fam), [35].

259 : http://www.advancecaredirectives.sa.gov.au/upload/home/June_CurrentFillable_ACDForm.pdf

260 : Hunter and New England Area Health Service v A [2009] NSWSC 761 and Re T [1992] EWCA Civ 18; [1993] Fam 95. See also Airedale NHS Trust v Bland [1992] UKHL 5; [1993] AC 789, 864; Re C [1994] 1 All ER 819 and R (Burke) v General Medical Council [2005] EWCA Civ 1003, [57][2005] EWCA Civ 1003; , [2006] QB 273.

261 : (1954) 91 CLR 432, 438.

262 : In re C [1994] 1 All ER 819.In HE v Hospital NHS Trust [2003] EWHC 1017 (Fam) [20] Munby J noted that some propositions are now so well established in (English) law as no longer to require either justification or elaborate citation of authority. The first of these was that a competent adult patient has an absolute right to refuse consent to any medical treatment or invasive procedure, whether the reasons are rational, irrational, unknown or non-existent, and even if the result of refusal is the certainty of death.

263 : This matter is specifically dealt with by McDougall J in Hunter and New England Area Health Service v A [2009] NSWSC 761 [28].

264 : In re T [1993] Fam 95. Medium free electronic version on Bailii as T, Re [1992] EWCA civ 18.

265 : British Medical Association, Assessment of mental capacity: guidance for doctors and lawyers, (2004) BMJ Books London. P 128-129.

266 : In re C [1994] 1 All ER 819, 822 and 824.

267 : Fazel S, Hope T, Jacoby R. "Assessment of competence to complete advance directives: validation of a patient centred approach". BMJ. (1999) Feb 20;318(7182):493-7.

268 : Ibid., p99

269 : Cook D, Rocker G, Marshall J, Griffith L, McDonald E, Guyatt G; "Level of Care Study Investigators; Canadian Critical Care Trials Group Levels of care in the intensive care unit: a research program" Am Journal Critical Care. 2006; 15(3):269-279.

270 : Ambrose M., Capacity Assessment for making and Advance Health Directive: the Role of a Neuropsychologist In : Collier B., Coyne C., Sullivan K., (Ed) "Mental Capacity: Powers of Attorney and Advance Health Directives " (2005) Federation Press p147. For a case dealing with advance decisions made by a patient with anorexia nervosa see, Re E (Medical treatment: Anorexia) (Rev 1) [2012] EWHC 1639 (COP).

271 : Inouye, S. K., Foreman, M. D., Mion, L. C., Katz, K. H. and Cooney, L. M., Jr.(2001). Nurses' recognition of delirium and its symptoms: comparison of nurse and researcher ratings. Archives of Internal Medicine, 161, 2467-2473..see also Friedlander, M. M., Brayman, Y. and Breitbart, W. S. (2004). Delirium in palliative care. Oncology, 18, 1541-1551; Leonard, M., Agar, M., Mason, C. and Lawlor, P. (2008). Delirium issues in palliative care settings. Journal of Psychosomatic Research, 65, 289-298. Meagher, D. and Leonard, M. (2008). The active management of delirium: improving detection and treatment. Advances Psychiatric Treatment, 14, 292-301.

272 : Voyer, P., Richard, S., Doucet, L., Danjou, C. and Carmichael, P. H.(2008). Detection of delirium by nurses among long-term care residents with dementia. BMC Nursing, 7, 4.

273 : Fick, D. and Foreman, M. (2000). Consequences of not recognizing delirium superimposed on dementia in hospitalized elderly individuals. Journal of Gerontological Nursing, 26, 30-40. See also Voyer, P., Richard, S., Doucet, L., Danjou, C. and Carmichael, P. H.(2008). Detection of delirium by nurses among long-term care residents with dementia. BMC Nursing, 7, 4.

274 : Friedlander, M. M., Brayman, Y. and Breitbart, W. S. (2004). Delirium in palliative care. Oncology, 18, 1541-1551; Massie, M. J., Holland, J. and Glass, E. (1983). Delirium in terminally ill cancer patients. American Journal of Psychiatry, 140, 1048-1050.

275 : See Box 1 below.

276 : See Box 1 below.

277 : Fazel S, Hope T, Jacoby R., "Dementia, intelligence, and the competence to complete advance directives" Lancet. 1999 Jul 3;354(9172):48

278 : Darzins, P, Molloy DW, Strang D., Who can decide? The six step capacity assessment process, Adelaide, Memory Australia Press, 2000, p6.

279 : Livingston G., Lewis-Homes E., Pitfield C., et al (2013) Improving the end-of-life for people with dementia living in a care home: an intervention study, Intern Psychogeriatr. 25(11):1849-58

280 : Caplan GA, Meller A, Squires B, Chan S, Willett W. (2006) Advance care planning and hospital in the nursing home Age Ageing. 35(6):581-5.

281 : Foti, M. E., Bartels, S. J., Merriman, M. P., Fletcher, K. E., & Van Citters, A. D. (2005). Medical advance care planning for persons with serious mental illness. Psychiatric Services, 56 (5), 576-584. See also Foti, M. E., Bartels, S. J., Van Citters, A., Merriman, M. P., & Fletcher, K. (2005). End- of-life treatment preferences of persons with serious mental illness. Psychiatric Services, 56 (5), 585-591.

282 : Lutterman, T; Ganju, V; Schacht, L; Monihan, K; et.al. Sixteen State Study on Mental Health Performance Measures. DHHS Publication No. (SMA) 03-3835. Rockville, MD: Center for Mental Health Services, Substance Abuse and Mental Health Services Administration, 2003.

283 : Davie, E (2006) A social work perspective on palliative care for people with mental health problems. European Journal of Palliative Care, 13(1): 26-28.

284 : www.health.nsw.gov.au/patients/acp/Pages/introductory- guide.aspx and www.health.nsw.gov.au/patients/acp/Pages/comprehensive- guide.aspx;

285 : Peisah C. (2013) Guideline: GE2013-029 End of Life -MHDA. Northern Sydney Local Health District 2013. Available on request from Northern Sydney Local Health District Policies Procedures and Guidelines.

286 : Wiese M, Stancliffe RJ, Dew A, Balandin S, Howarth G..What is talked about? Community living staff experiences of talking with older people with intellectual disability about dying and death J Intellect Disabil Res. 2014 Jul;58(7):679-90. See also Wiese M, Dew A, Stancliffe RJ, Howarth G, Balandin S 'If and when?': the beliefs and experiences of community living staff in supporting older people with intellectual disability to know about dying J Intellect Disabil Res. 2013;57(10):980-92. Wiese, M Stancliffe, R.J., Read, S.,Jeltes G., &. Clayton J.M. (2015): Learning about dying, death, and end-of-life planning: Current issues informing future actions, Journal of Intellectual and Developmental Disability, 40(2) , 230-235.

287 : Ibid. 93 and 98.

288 : Ibid. 16.

289 : NSW Health, op. cit. (footnote 170) p 6.

290 : Ibid.

291 : Molloy DW, Silberfeld M, Darzins P, Guyatt GH, Singer PA, Rush B, Bedard M, Strang D. "Measuring capacity to complete an advance directive" J Am Geriatr Soc. 1996 June 44(6):660-4.

292 : Ambrose M., Capacity Assessment for making and Advance Health Directive: the Role of a Neuropsychologist In : Collier B., Coyne C., Sullivan K., (Ed) Mental Capacity: Powers of Attorney and Advance Health Directives, Sydney, Federation Press, 2005, p xxx

293 : Darzins, P, and others, op. cit. (footnote 237) 94-97.

294 : Fazel et al, op cit., pp 494-5,

295 : HE v Hospital NHS Trust [2003] EWHC 1017 (Fam) [46].

296 : Treloar A, "Advance directives: Limitations upon their applicability in elderly care International", Journal Geriatric Psychiatry (1999) 14, 1039-1043. p 1039

297 : Paul Biegler, Cameron Stewart, Julian Savulescu and Loane Skene, "Determining the validity of advance directives" MJA 2000; 172: 545-548.

298 : HE v Hospital NHA Trust [2003] EWHC 1017 (Fam), [46].

299 : Stewart, C "Advance directives: Disputes and dilemmas" in Freckelton, I and Petersen, K, op cit (footnote 212) pp 42-43. Cruzan v Director, Missouri Health Department [1990] USSC 122; 497 US 261 (1990).

300 : HE v Hospital NHA Trust [2003] EWHC 1017 (Fam), [24].

301 : Briginshaw v Briginshaw [1938] HCA 34, 60 CLR 336, 362.

302 : HE v A Hospital NHS Trust [2003] EWHC 1017 (Fam) [46].

303 : Ibid. [47]-[49].

304 : Ibid. [52]

305 : Re AF (unreported, NSW Guardianship Tribunal, matter no 2004/1867, 6 April 2004).

306 : Stewart, C "Advance directives: Disputes and dilemmas" in Freckelton, I and Petersen, K, op.cit. (footnote 212) pp 49-50. For a case in which the former Guardianship and Administration Board of Victoria did not, in an emergency situation, pursue the likelihood that a person refusing a blood transfusion may have been a Jehovah's Witness and may have had an advance directive in the form of a "blood card" see, Qumsieh v Guardianship and Administration Board (1998) 14 VAR 46. See also Stewart's discussion of that case, and related matters, in Stewart, C, "Qumsieh's Case, Civil Liability and the Right to Refuse Medical Treatment", (2000) 8 JLM 56.

307 : 728 A. 2d 166 (1999). This case has been overturned by a subsequent Maryland statute, see Plein v Department of Labor 800 A. 2d 757, 765 (2002).

308 : In re T [1992] EWCA Civ 18; [1993] Fam 95. Medium free electronic version on Bailii as T, Re [1992] EWCA civ 18.

309 : Ibid. 113-114.

310 : Darzins, P,et al op. cit. (footnote 278), 94-97.

311 : Ibid., p 91

312 : R (on the application of Burke) v General Medical Council [2004] EWHC 1879 (admin). For the actual declarations see, R (on the application of Burke) v General Medical Council [2005] EWCA Civ 1003 [22].

313 : R (on the application of Burke) v General Medical Council [2005] EWCA Civ 1003 [50].

314 : Northridge v Central Sydney Area Health Service [2000] NSWSC 1241 [24][2000] NSWSC 1241; , 50 NSWLR 549.

315 : Isaac Messiha (by his tutor Magdy Messiha) v South East Health [2004] NSWSC 1061 [28]. For another discussion this matter see, Stewart, C "Advance directives: Disputes and dilemmas" in Freckelton, I and Petersen, K, op cit (footnote 212) pp 51-52. See also Skene, L, "The Schiavo and Korp cases: Conceptualising end-of-life decision-making" (2005) 13 JML 223.


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