O'Neill, Nick; Peisah, Carmelle --- "Chapter 13 - Advance Directives" [2011] SydUPLawBk 15; in O'Neill, Nick; Peisah, Carmelle (eds), "Capacity and the Law" (Sydney University Press, 2011)

Chapter 13 - Advance Directives

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.

There is legislation about a limited form of advance directive in Victoria, South Australia, Queensland, Western Australia the Australian Capital Territory and the Northern Territory. In essence it does no more than provide a statutory right to refuse treatment which is then circumscribed with procedural requirements. This chapter describes the struggle to get this legislation enacted and then the scope and effect of the legislation itself.

Before that the chapter discusses what the different kinds of advance directives are and the arguments for and against advance directives.

Currently in Australia, it is becoming part of both State and Commonwealth health policy to encourage people to consider making advance directives, at least about the health care and treatment they want if they lose capacity to make their own decisions, and to put in place mechanisms to help them do so.^[1] 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 everywhere except South Australia states that it does not affect:

1. the right of a person to refuse medical or surgical treatment - (NT);

2. a right to refuse treatment under any other law - (Vic and ACT);

3. the common law recognition of instructions about health care given but not included in an advance health directive - (Qld);

4. the common law relating to a person’s entitlement to make treatment decisions in respect of the person’s future treatment - (WA).^[2]

It is suggested that these statements preserve the common law and that the South Australian provisions are so limited in operation that there is no necessary implication that they intended to replace the common law.^[3]

Consequently, 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.

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. ^[4] 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.^[5] 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.^[6] 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

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.^[7]

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.^[8]

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.^[9] 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), the Guardianship and Administration Act 1993 (SA) and the Guardianship and Administration Act 1995 (Tas).^[10]

13. 2. 2. Proxy directives

The other usual kind of written advance directive is the proxy directive where the person chooses who they want to make substitute health (and other) decisions for them should they lose decision-making capacity. In New South Wales, South Australia, Tasmania, Victoria 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.^[11] In Queensland and the Australian Capital Territory attorneys can be appointed under enduring powers of attorney for personal matters including health matters.^[12]

13. 2. 3. Oral advance directives

However, 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.^[13]

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.^[14] .

13. 3. Arguments for and against advance directives

While advance directives have been discussed, and various kinds have come into existence in the second half of the 20^th century, their popularity has only begun to increase in Australia in the 21^st century. There have been discussions of the arguments for and against them by ethicists and others and research on a number of matters relevant to their effectiveness has been carried out.

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 than they otherwise would if life sustaining treatment was continued until the medical decision that further treatment was futile was made. 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.^[15] 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. 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.^[16]

Furthermore, while proxy decision-making in regards to advance care planning can offer a viable alternative for those who 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).^[17] 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. ^[18]

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.^[19] 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.^[20]

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.^[21] In countries such as Holland 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 ^[22] 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.^[23] 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.^[24] 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.^[25]

Healthy patients do not make the same choices as sick ones.^[26] 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.^[27] The disability paradox" is also seen among hospice patients who value preservation of quality of life despite physical ailments and psychosocial concerns.^[28]

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.^[29] 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.^[30] Cancer patients and healthy persons widely disregard instructions laid down in advance directives and consider them less binding than physicians and nursing staff. ^[31] 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.^[32] 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.^[33]

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. ^[34]

Importantly, Treloar has 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.^[35]

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.^[36] 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.^[37]

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?^[38]

The use of advance directives in anticipation of developing dementia has been seen as particularly problematic.^[39] 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. The case of “Margo” has been used as an exemplar of such a situation and thus a focus for debate.^[40]

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.^[41] 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.^[42] 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.^[43] 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 as series of discussions about their long–term care.^[44]

The enforcement of advance care directives clearly poses a number of ethical and legal challenges to health care professionals, as suggested by the 2006 position statement of the Australian Medical Association (AMA). ^[45] 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.^[46]

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.^[47]

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.^[48]

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); however the Natural Death Act 1988 (NT) is essentially identical to the now repealed Natural Death Act 1983 (SA).^[49] As will be seen at 13. 4. 2, in its Northern Territory manifestation, it was really the enactment of a statutory right to refuse medical treatment.

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.^[50] 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.^[51]

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.^[52] 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.^[53] The “thin end of the wedge” argument leading to active euthanasia was put and reference was made Nazi Germany’s extermination policies.^[54]

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.^[55]

The legislation that was enacted as the Medical Treatment Act 1988 (Vic) is of very limited operation It is described later in this chapter at 13. 5. 1.^[56]

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.^[57] Apparently it attracted little public debate in the Territory at the time.^[58] The Act 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.^[59] 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.^[60]

The legislation was enacted on a conscience vote after another open debate. It 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.^[61] 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.^[62]

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.^[63] 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.^[64] 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.^[65] It was agreed to without a division.^[66] 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.^[67] 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 .^[68] 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.^[69]

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.^[70] 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”.^[71] 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).^[72]

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.^[73] 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”.^[74] 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, South Australia, Western Australia, the Australian Capital Territory and the Northern Territory as well as the broader form in Queensland. 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.^[75] 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. ^[76]

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. ^[77] 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.^[78] 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.^[79] 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.^[80] When they make a refusal, they must complete a refusal of treatment form.^[81]

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.^[82] 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).^[83] Any refusal of treatment certificate made by an attorney or a guardian whose appointment is revoked is also revoked, immediately upon that revocation.^[84]

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.^[85]

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.^[86]

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.^[87] 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.^[88]

There are provisions in the Act for the cancellation of refusal of treatment certificates and for the consequences arising from such cancellations.^[89]

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.^[90]

13. 5. 2. Northern Territory – Natural Death Act 1988

The Northern Territory Act provides that anyone who is 18 years or over and who desires not to be subjected medical or surgical measures that prolong or are intended to prolong life in the event of them suffering from a terminal illness may make a direction, but in the prescribed form. ^[91] The prescribed form requires the direction to be witnessed by two witnesses.^[92] Any such direction becomes operational only if its maker has a terminal illness. The circumstances in which the direction can apply are further limited by the definition of “terminal illness”. It is defined as an illness, injury or degeneration of mental or physical faculties in relation to which death would be imminent if extraordinary measures were not undertaken and that even if no extraordinary measures were taken there was no reasonable prospect of either a temporary or permanent recovery.^[93] If all these requirements are met then it is the duty of the doctor treating the person to act in accordance with the direction.^[94]

Doctors are protected from liability if they refuse to act in accordance with the direction on the grounds that the person is or is not suffering from a terminal illness, that the person had revoked or intended to revoke the direction or that the person was not capable of understanding the nature and consequences of the direction at the time they made it.^[95] The withholding or withdrawal of extraordinary measures in accordance with a direction does not constitute a cause of death.^[96]

The Natural Death Act 1988 (NT) is also considered in Chapter 12. 10. 1. 3 and Chapter 14.

13. 5. 3. South Australia – Consent to Medical Treatment and Palliative Care Act 1995

Like the Victorian Act, the South Australian Act provides for an adult of sound mind to give a direction about the medical treatment they want when they have a condition or illness which is likely to result in death or if they were in a persistent vegetative state and if they are incapable of making decisions about medical treatment when they have that illness or condition.^[97] The direction must be in the form set out in the regulation and witnessed in accordance with the requirements of the regulation.^[98]

The Consent to Medical Treatment and Palliative Care Act 1995 (SA) also allows adults of sound mind to appoint attorneys (called an agent in the Act) under medical powers of attorney which give the attorney the power to make decisions about the person’s medical treatment. These appointments must be made on the prescribed form.^[99] Attorneys must exercise the powers to make decisions about medical treatment in accordance with any lawful conditions or directions contained in the power of attorney or in accordance with any anticipatory direction given by the person appointing them^[100] However, the attorney may not refuse the “natural” provision of food and water. This could be taken as to provision of food and water to be taken by mouth by the person if they wished to, as suggested by Morris J.^[101] Attorneys may not refuse the administration of drugs to relieve pain or distress or medical treatment that would result in the person regaining the capacity to make decisions unless the person is in the terminal stages of an illness or condition that is likely to cause their death.^[102]

The Act imposes a duty on doctors to explain to a patient, or their representative, including their attorney appointed under a medical power of attorney, as far as may be practicable and reasonable in the circumstances, the nature, consequences and risks of proposed medical treatment, the consequences of not undertaking the treatment and any alternative treatment or courses of treatment that might be reasonably be considered in the circumstances of the particular case.^[103] Doctors who are treating patients in the terminal stages of illnesses or conditions that are likely to result in death will not be civilly or criminally liable for giving medical treatment with the intention of relieving pain or distress, even though an incidental effect of that treatment is to hasten death. However, the doctor must administer the treatment with the consent of the patient or their representative, in good faith, without negligence and in accordance with the proper professional standards of palliative care.^[104]

There is another provision in the Act that could cause difficulties for doctors treating patients who are dying. While the Act does not require doctors to continue life sustaining measures merely to prolong the life of a person already in a moribund state without any real prospect of recovery or in a persistent vegetative state, the Act makes this provision apply “in the absence of an express direction by the patient or the patient’s representative”.^[105] Does this apparently implied power to patients, their attorneys under medical powers of attorney, their guardians and possibly relatives who are the “proper authority” to give or refuse substitute consent to medical treatment, to direct the continuation of treatment even when it is futile? Such a power would cut across the established common law position that doctors should not be required to provide treatment that, objectively viewed, is futile?^[106]

The Act also gives statutory jurisdiction to the Supreme Court of South Australia to review decisions made by attorneys under medical powers of attorney to ensure that their decisions are in accordance with the lawful conditions or directions in the power of attorney or the anticipatory direction given by the person.^[107] However, the Court may not review such a decision if the person is in the terminal stage of their illness or condition and the treatment would merely prolong life in a moribund state without any real prospect of recovery.^[108] Does this statutory review power place a limit on 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.^[109] 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.^[110]

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.^[111] Two witnesses must sign the direction in the presence of the person making the direction and in the presence of each other.^[112] Directions not in writing have to be witnessed by a doctor and another health professional, both present at the same time.^[113]

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.^[114] 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.^[115]

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 onto apply what has been adopted in England as the test for capacity to give consent to medical treatment. If the person fails that test, then their refusal of treatment direction is not to be acted upon. However, what the test actually does is show whether or not the person is competent to give a valid refusal (or consent) to the medical treatment at the time the test was given.^[116] Failure of the test shows that the original opinion that the person was still competent was incorrect. Consequently, the direction previously given by a now incompetent person should be followed.

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 – something which is more difficult to ascertain, particularly as it involves proving a negative – and that the person has not changed their decision since making their direction – something which is impossible to ascertain given that the person now has impaired decision-making capacity.^[117]

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.^[118]

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 revokes the health directive.^[119] 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.^[120] 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.^[121] 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.^[122]

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.^[123] 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.^[124]

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.^[125]

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.^[126] 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 a 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.^[127]

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).^[128]

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.^[129] 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.^[130] 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.^[131] Such a directive can also include a direction requiring that life-sustaining measures be withheld or withdrawn in specified circumstances.^[132]

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.^[133]

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. They may also provide terms or information about exercising such powers of attorney for health matters.^[134] The approved form for an advance health directive has 22 printed pages.^[135]

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.^[136]

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. 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, the person is in a persistent vegetative state or is permanently unconscious, that is with brain damage so severe that there is no reasonable prospect that the person will regain consciousness or 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.^[137] 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.^[138]

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.^[139] 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.^[140] 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.^[141] 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.^[142] This cannot be done if person’s health provider knows that the person objects to the withholding or withdrawal of the treatment.^[143] 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.^[144]

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.^[145]

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.^[146] 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.^[147]

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.^[148] 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.^[149]

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.^[150] 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.^[151] Advance health directives must be signed by the maker and two witnesses in the presence of each other.^[152] A register may be established so that advance health directives may be registered.^[153]

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.^[154]

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.^[155]

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.^[156]

When someone, usually a health professional, is seeking to decide whether a now incapable person’s a 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.^[157] 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.^[158]

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.^[159] 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.^[160] 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.^[161] As is apparent from the Act, as discussed in Chapter 12. 7. 4, 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.^[162]

13. 5. 6. 1. 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.^[163] 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,^[164]

2. give directions about giving effect to a treatment decision in a directive or the construction of the terms of a directive,^[165]

3. make a declaration that a treatment decision in a directive is to be taken to have been revoked,^[166] 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.^[167]

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.^[168] 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.^[169] 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.^[170]

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. 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”.^[171] The legislation in Victoria, the Australian Capital Territory and the Northern Territory specifically states that it does not affect the right of a person under any other law to refuse medical treatment.^[172] The South Australian legislation 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.^[173] 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. The New South Wales Department of Health has published a booklet “Using Advance Care Directives” for the purpose of providing health professionals with information on the best practice use of advance care directives. While the booklet concentrates 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 booklet 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.^[174] The booklet also notes that failure to comply with an advance care directive that meets the requirements set out in the booklet may result in health professional involved incurring civil liability for providing the treatment. ^[175] However, the main thrusts of the booklet 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 their questions about issues that frequently arise in relation to advance directives. The booklet 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.^[176]

While the booklet 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.^[177]

As noted earlier in this chapter at 13. 2. 2, in New South Wales, South Australia, Tasmania, Victoria 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.^[178] 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.^[179] In New South Wales such appointors can include, in the appointment, binding lawful directions to the enduring guardian.^[180] In Tasmania they can impose conditions as well as include binding lawful directions.^[181] In South Australia, the appointor can impose or include conditions, limitations or prohibitions.^[182] In Western Australia appointors may include directions as to how enduring guardians are to perform their functions.^[183] In Victoria and Queensland the appointors are not specifically empowered to do any of these things, but may be able to impose effective limits on the enduring guardian’s or attorney’s powers by careful drafting of their document of appointment. By these means 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.

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.^[184] Consequently, by implication, the advance directive is also binding on the enduring guardian, the appointor’s carers and the appointor’s other health service-providers.

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.^[185]

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”.^[186]

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.^[187] 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.^[188]

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. At this stage in the history of advance directives, many of them are drawn up by the maker. Some are developed as a series of answers to questions posed in booklets designed to present people with the relevant issues, encourage them to consider then express their views and values and then decide whether they wish to complete an advance directive. Some advance directives are drawn up by those interested in the issue for the maker to consider and adopt. Also, advance care directives are being drawn up increasingly by health care professionals in hospital and residential care settings. Over time, more advance directives may be drawn up by lawyers.

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. However, it is wise for the health care professional involved in such a process to carry out at least the basic checks regarding capacity, particularly with those who are ageing or in residential care facilities. 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 competence 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. If the person has a known psychiatric illness an opinion regarding their capacity should be sought from the person treating the patient for that illness.

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.^[189] The test must also allow for those who draw up their own advance directives. The usual staring 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.^[190]

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 that their advance directive:

1. was a binding statement of their wishes in relation to medical treatment they wish to receive in relation to certain illnesses or when they had reached certain levels of functioning or when their likelihood of recovery was only to certain levels of functioning if actively interventionist treatment was carried out on them. (This statement may contain other personal matters.);

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. If the advance directive is about the 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 kinds of treatment the maker wants when they have reached certain levels of functioning, or is about the kinds of treatment the maker wants when their likelihood of recovery is only to 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.^[191] Consequently, it is not appropriate to impose requirements that render it impossible to give effect to this right.^[192]

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.^[193] This approach, if adopted in Australia, would have the effect of making it difficult for an advance directive about medical treatment not made in the light of the maker’s current medical situation to be given effect to. First it 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.^[194] 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.^[195]

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 excluded. 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.^[196] 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. ^[197] 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.^[198] Pain 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.^[199] 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 ^[200] 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.

Dementia is not an absolute 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. ^[201] While 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. The complexity of the decision made will determine 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). ^[202] Accordingly, some patients with dementia may be competent to make an advance directive about resuscitation but not about chemotherapy.

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.

13. 6. 3. 2. Maximising involvement

In addition to excluding and addressing such conditions, a number of conditions must be attended to maximize the person’s involvement in the process. Barriers to communication (e.g. background noise, poor lighting, flat hearing-aid batteries) should be dealt with so that the person can be at their best and if possible, free of distractors. ^[203] 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”.^[204] 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.^[205]

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.^[206]

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,^[207] 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.^[208]

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 ^[209]

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.^[210] 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 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 check with family if this is consistent with the person’s prior personality or expressed wishes. 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.

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, if it requires the giving of treatments that will not slow the dying process, in cases where more active life-sustaining treatments are medically indicated. 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.^[211] 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 and continue to depart from the requirements of the advance directive only when their enquiries show that there are proper grounds for doubting that the person had capacity when they made the advance directive, or that there are proper grounds for doubting that the advance directive is still in operation for other reasons, such as that the person has probably changed their mind and revoked the advance directive or that it was made when the maker was under undue influence and did not reflect their wishes. As noted earlier, this is where the benefits of having the making of an advance directive witnessed come into play. If the advance directive is in writing and witnessed, particularly if it has been drafted by a solicitor and signed in their presence, then there are likely to be witnesses available to provide information. In any event evidence of such facts makes it easy to infer that the advance care directive was made correctly and the issue of capacity addressed if indeed it arose.

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 or other material that the now treating team has available to them as to the person’s cognitive or emotional 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.^[212] 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.^[213]

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 want active and interventionist treatment if they are at a certain level of functioning but not want if their level of functioning has fallen to a lower level. 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 the makers of advance directives, while they still have capacity, to discuss them with their general practitioners or other treating doctors.

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.^[214]

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.^[215] 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.^[216]

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.^[217]

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.



If there is doubt that doubt falls to be resolved in favour of the preservation of life.^[218]

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.^[219] He then made a declaration allowing the blood transfusion to take place, at the discretion of AE’s treating doctors, on best interests grounds.^[220]

In a 2004 a man’s treating doctors and the Guardianship Tribunal of New South Wales 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.^[221] Stewart has criticized the Tribunal’s decision.^[222]

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.^[223]

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.^[224] 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 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.^[225]

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.^[226] 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.^[227]

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.^[228]

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 practice 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.

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.^[229]

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. ^[230] 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.^[231]

^[1] Using Advance Care Directives (NSW), NSW Dept of Health, 2005, www.health.nsw.gov. Doc GL2005_056 and Guidelines for end of life care & decision-making Doc GL2005_057. See also Respecting Patient Choices Program, www.respectingpatientchoices.org.au.

^[2] Natural Death Act 1988 (NT) s 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 .

^[3] Consent to Medical Treatment and Palliative Care Act 1995 (SA).

^[4] 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 .

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

^[6] NSW Department of Health Using advance care directives (NSW) (2005), GL2005- 056.NSW Department of Health: North Sydney: 1.

^[7] 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.

^[8] 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.

^[9] 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.

^[10] 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).

^[11] Guardianship Act 1987 (NSW), Guardianship and Administration Act 1993 (SA), Guardianship and Administration Act 1995 (Tas), Guardianship and Administration Act 1986 (Vic) and Guardianship and Administration Act 1990 (WA) (s 110G(4).

^[12] Powers of Attorney Act 1998 (Qld), s 32 and Sch 2 ss 2, 4 and 5 and Powers of Attorney Act 2006 (ACT).

^[13] Sommerville, A “Rememberence of conversations past: oral advance statements about medical treatment” BMJ 1995; 310: 1663-1665, p 1664.

^[14] [1990] USSC 122; 110 S.Ct. 2841, 2857 (1990). See also Sommerville, op cit (footnote 8) 1665.

^[15] Ibid.,p 7

^[16] NSW Department of Health op cit, p 2

^[17] Gedge E. B.”Collective moral imagination: making decisions for person with dementia” J Med Philosophy (2004) 29,4, p 436

^[18]Meeker MA, Jezewski MA “Family decision making at end of life”. Palliat Support Care. 2005 3(2):131-42. Shalowitz DI, 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.

^[19] Davis, J.K. (2002) “The concept of precedent autonomy” Bioethics 2002; 16:114-133.

^[20] Gedge E. B. “Collective moral imagination: making decisions for person with dementia” J Med Philosophy (2004) 29,4, :435-450.

^[21] 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.

^[22] 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.

^[23] Degrazia, D. “Advance directives, dementia, and the ‘someone else problem’.”, (1999) Bioethics Vol 13 no 5, 373, 375.

^[24] Ibid 378.

^[25] Ibid 376.

^[26] Treloar A “Advance directives: Limitations upon their applicability in elderly care” International Journal Geriatric Psychiatry (1999) 14, 1039-1043. p 1040

^[27] 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.

^[28] 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.

^[29] 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.

^[30] 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.

^[31] 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.

^[32] 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.,

^[33] 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.

^[34] 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.

^[35]Treloar, A Paradigms of

^[36] Treloar A “Advance directives: Limitations upon their applicability in elderly care” International Journal Geriatric Psychiatry (1999) 14, 1039-1043. p 1039.

^[37] Paul Biegler, Cameron Stewart, Julian Savulescu and Loane Skene “Determining the validity of advance directives.” MJA 2000; 172: 545-548, p546

^[38] Ibid., p 1041.

^[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] 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.

^[41] Dworkin R, Life’s Dominion (1993) New York Alfred AKnopf. p 218-237.

^[42] Harvey M. “Advance directives and the severely demented” Journal of Medicine and Philosophy (2006) 31, 47-64., p52

^[43] Dresser R. “Dworkin on dementia. Elegant theory questionable practice” Hastings Centre Report (1995) 32-38, p 34

^[44] Harvey M “Advance directives and the severely demented” Journal of Medicine and Philosophy (2006) 31, 47-64., p 61

^[45] The Role of the Medical Practitioner in Advance Care Planning – 2006; http://www.ama.com.au/node/2428, 1.1-1.4.

^[46] The Role of the Medical Practitioner in Advance Care Planning – 2006, http://www.ama.com.au/node/2428, 1.1-1.4.

^[47] Willmott, L, White, B, Howard, M, “Refusing Advance Refusals: Advance Directives and Life-Sustaining Medical Treatment” [2006] MelbULawRw 7; (2006) 30 MULR 211, 238.

^[48] 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.

^[49] See Sch. 3 Item 1, the Consent to Medical Treatment and Palliative Care Act 1995 (SA).

^[50] Report upon the Inquiry into Options for Dying with Dignity, Social Development Committee, Victorian Parliament, 1987.

^[51] Ibid. (v) – (ix).

^[52] Victoria Parliament, Parliamentary Debates, Legislative Council, 23 March 1988, 296 and 332.

^[53] Victoria Parliament, Parliamentary Debates, Legislative Assembly, 6 May 1988, 2243-2244.

^[54] 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.

^[55] 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.

^[56] 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.

^[57] Northern Territory Legislative Assembly Parliamentary Record, 5^th Assembly, 1^st Session,, 17 August 1988, 3537 and 11October 1988 4404-4420.

^[58] Ibid. 11 October 1988, 4405.

^[59] South Australia, Parliament, Parliamentary Debates, House of Assembly, Wed. 30 November 1994, 1350.

^[60] Ibid. 989.

^[61] ACT Legislative Assembly Debates (Hansard), 21 April 1994, 1124.

^[62] Ibid. 14 September 1994, 2874.

^[63] Ibid. 2878.

^[64] Ibid. 2878 and 2879.

^[65] Powers of Attorney Act 2006 (ACT) s 13.

^[66] Hansard of the ACT Legislative Assembly, 21 Sept. 2006, p 3010 and 21 Nov 2006, p 3672.

^[67] Queensland Law Reform Commission, Assisted and Substituted Decisions, Report No 49, June 1996, Ch. 10 and Appendix B.

^[68] 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.

^[69] Queensland Parliamentary Debates , seriatim, 8 October 1997 to 12 May 1998.

^[70] Acts Amendment (Advance Health Care Planning) Bill 2006 (WA).

^[71] Law Reform Commission of Western Australia, “Medical Treatment for the Dying”, Report of Project No 84, 1991, 6.

^[72] Ibid. 9.

^[73] Legislative Assembly of Western Australia Hansard for 21 June 2006.

^[74] See for example, Legislative Council of Western Australia Hansard for 15 August 2008, pp 4069-4088.

^[75] Medical Treatment Act 1988 (Vic) s 1.

^[76]Ibid. s 5(1).

^[77] Ibid. s 3. The power of attorney must be in the form set out in Schedule 2 of the Medical Treatment Act 1988 (Vic).

^[78] Ibid. s 5B(1).

^[79] Ibid. s 5B(2).

^[80] For a different view of the operation of s 5B(2) of the Medical Treatment Act 1988 (Vic) see Porter D, op. Cit. (footnote 56), 264-266.

^[81] Ibid. s 5B(2) and Schedule 3.

^[82] Ibid. s 5C.

^[83] Ibid s 5C(3) and (4).

^[84] Ibid. s 5D(1).

^[85] Ibid. s 5E

^[86] Ibid. ss 6 and 9.

^[87] Ibid. s 1.

^[88] Re BWV; Ex parte Gardner [2003] VSC 173, 7 VR 487, [84]-[87] and [91].

^[89]See Medical Treatment Act 1988 (Vic) generally. For another description of the Act and how it operates see, Porter, D. op. cit. (footnote 56).

^[90] Porter, D. op. cit. (footnote 56) 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.

^[91] Natural Death Act 1988 (NT), s 4(1).

^[92]Schedule of the Natural Death Regulations 1989 (NT).

^[93] Natural Death Act 1988 (NT), s 3.

^[94] Ibid. s 4(3).

^[95] Ibid. s 5(3).

^[96] Ibid. s 6.

^[97] Consent to Medical Treatment and Palliative Care Act 1995 (SA), s 7.

^[98] Ibid. See also Consent to Medical Treatment and Palliative Care Regulations 2004 (SA), Sch 1. The Office of the Public Advocate in South Australia provides information on mental capacity and advance directives; see www.opa.sa.gov.au.

^[99] Consent to Medical Treatment and Palliative Care Regulations 2004 (SA), Sch 1.

^[100] Consent to Medical Treatment and Palliative Care Act 1995 (SA), s 8(8)..

^[101] Re BWV; Ex parte Gardner [2003] VSC 173, 7 VR 487, [82]-[91]..

^[102] Consent to Medical Treatment and Palliative Care Act 1995 (SA), ss 3 and 8(7).

^[103] Ibid. ss 3 and 15.

^[104] Ibid. s 17(1).

^[105] Ibid. s 17(2).

^[106] Ibid. and Guardianship and Administration Act 1993 (SA) s59. See for example, Isaac Messiha (by his tutor Magdy Messiha) v South East Health [2004] NSWSC 1061.

^[107] Ibid. s 10(1) and (3).

^[108] Ibid. s 10(2).

^[109] Medical Treatment (Health Directions) Act 2006 (ACT) s 7.

^[110] Ibid. s 10.

^[111] 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.

^[112] Ibid. s 7(b) and (c).

^[113] Ibid. s 9.

^[114] Ibid. s 11(1)and(2).

^[115] Ibid. s 11(3).

^[116] See Thorpe J’s test in Re C [1994] 1 All ER 819, 822.

^[117] Medical Treatment (Health Directions) Act 2006 (ACT) s 12.

^[118] Ibid. s 18.

^[119] Ibid. s 19.

^[120] Powers of Attorney Act 2006 (ACT) ss 12 and 13.

^[121] Ibid. Schedule 1.11.

^[122] 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.

^[123] 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].

^[124] Ibid. s 17.

^[125] Ibid. ss 13 and 14.

^[126] Ibid. s 16.

^[127] Ibid. s 15.

^[128] 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.

^[129] Powers of Attorney Act 1998 (Qld), s 35(1)(a).

^[130] Ibid. Sch 2 s 7.

^[131] Ibid. Sch 2 s 5.

^[132] Ibid. s 35(2)(b).

^[133] Ibid. Sch 2 s 5A.

^[134] Ibid. s 35(1)(b), (c) and (d).

^[135] Ibid. s 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.

^[136] Ibid. s 36(1)(a) and Sch 3.

^[137] Ibid. s 36(2)(a).

^[138] Ibid .s 36(2)(b) and (c) and Sch 2 ss 4 and 5 and Sch 3..

^[139] Ibid. s 35(1)(c) and 36(4).

^[140] 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.

^[141] Guardianship and Administration Act 2000 (Qld), s 66(2).

^[142] 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.

^[143] Ibid. s 63A(2). The question of objection is dealt with in s 67 of the Act.

^[144] Ibid. s 63A(3).

^[145] 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).

^[146] Guardianship and Administration Act 2000 (Qld), s 79.

^[147] Guardianship and Administration Act 1990 (WA), s 110ZB.

^[148] Ibid. s 110P.

^[149] Ibid. s 3(1).

^[150] Ibid. s 110Q(1)(a). For the advance health directive form, see Guardianship and Administration Regulations 2005 (WA) Schedule 2.

^[151] Ibid ss 100P and 110R.

^[152] Ibid. s 110Q.

^[153] Ibid. s 110RA which was not in force 4-8-2011.

^[154] Ibid. s 110S(1) and (2).

^[155] Ibid. s 110S(3).

^[156] Ibid. s 110S(4).

^[157] Ibid. s 110S(5). Note that who qualifies as a person’s “person responsible” is set out at Chapter 12. 8. 4.

^[158] Ibid. s 110W.

^[159] Ibid. s 110S(6).

^[160] Ibid. s 110P.

^[161] Ibid. s 110ZJ.

^[162] Ibid. s 110T. Enduring powers of guardianship are dealt with in Part 9A of the Guardianship and Administration Act 1990 (WA). See Chapter 9.

^[163] Ibid. s 110V.

^[164] Ibid. s 110X.

^[165] Ibid. s 110Y.

^[166] Ibid. s 110Z.

^[167] Ibid. s 110ZA. This provision does not appear to be limited to the other Australian States and the Territories.

^[168] 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.

^[169] Ibid., 6

^[170] Respecting Patient Choices Program, www.respecting patientchoices.org.au.

^[171] Powers of Attorney Act 1998 (Qld) s 39.

^[172] Medical Treatment Act 1988 (Vic) s 4; Medical Treatment Act 1994 (ACT) s 5 and Natural Death Act 1988 (NT) s 5.

^[173] Guardianship and Administration Act 1990 (WA) s 110ZB.

^[174] NSW Department of Health, “Using Advance Care Directives” www.health.nsw.gov.au, p 5.

^[175] Ibid. p 9.

^[176] See for example, Stewart, C “Advance directives: Disputes and dilemmas” in Freckelton, I and Petersen, K, Disputes & Dilemmas, Sydney, Federation Press, 2006.

^[177] NSW Department of Health op cit (footnote 170) p 10

^[178] Guardianship Act 1987 (NSW), Guardianship and Administration Act 1993 (SA), Guardianship and Administration Act 1995 (Tas), Guardianship and Administration Act 1986 (Vic) and Guardianship and Administration Act 1990 (WA).

^[179] Powers of Attorney Act 1998 (Qld), s 32 and Sch 2 ss 2, 4 and 5.

^[180] Guardianship Act 1987 (NSW) s 6E(3).

^[181] Guardianship and Administration Act 1995 (Tas) s 32(5) and (6).

^[182] Guardianship and Administration Act 1993 (SA) s 25(5).

^[183] Guardianship and Administration Act 1990 (WA) s 110G(4).

^[184] [2009] NSWSC 761 [36]-[37].

^[185] HE v Hospital NHA Trust [2003] EWHC 1017 (Fam), [33].

^[186] Ibid. [34].

^[187] 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.

^[188] HE v Hospital NHA Trust [2003] EWHC 1017 (Fam), [35].

^[189] 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.

^[190] (1954) 91 CLR 432, 438.

^[191] 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.

^[192] This matter is specifically dealt with by McDougall J in Hunter and New England Area Health Service v A [2009] NSWSC 761 [28].

^[193] British Medical Association, Assessment of mental capacity: guidance for doctors and lawyers, (2004) BMJ Books London. P 128-129.

^[194] In re C [1994] 1 All ER 819, 822 and 824.

^[195] 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.

^[196] Ibid., p99

^[197] 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

^[198] 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

^[199] See Box 1 below.

^[200] Hooper SC Vaughan KJ, Tennant CC, Perz JM. “Preferences for voluntary euthanasia during major depression and following improvement in an elderly population” Aust J Ageing. 1997 Feb;16(1):3-7.

^[201] Fazel S, Hope T, Jacoby R., “Dementia, intelligence, and the competence to complete advance directives” Lancet. 1999 Jul 3;354(9172):48

^[202] Darzins, P, Molloy DW, Strang D., Who can decide? The six step capacity assessment process, Adelaide, Memory Australia Press, 2000, p6.

^[203] Ibid. 93 and 98.

^[204] Ibid. 16.

^[205] NSW Health, op. cit. (footnote 170) p 6.

^[206]Ibid.

^[207] Molloy DW, Silberfeld M, Darzins P, Guyatt GH, Singer PA, Rush B, Bédard M, Strang D. “Measuring capacity to complete an advance directive” J Am Geriatr Soc. 1996 June 44(6):660-4.

^[208] 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

^[209] Darzins, P, and others, op. cit. (footnote 202) 94-97.

^[210] Fazel et al, op cit., pp 494-5,

^[211] HE v Hospital NHS Trust [2003] EWHC 1017 (Fam) [46].

^[212] Treloar A, “Advance directives: Limitations upon their applicability in elderly care International”, Journal Geriatric Psychiatry (1999) 14, 1039-1043. p 1039

^[213] Paul Biegler, Cameron Stewart, Julian Savulescu and Loane Skene, “Determining the validity of advance directives” MJA 2000; 172: 545-548

^[214] HE v Hospital NHA Trust [2003] EWHC 1017 (Fam), [46].

^[215] Stewart, C “Advance directives: Disputes and dilemmas” in Freckelton, I and Petersen, K, op cit (footnote 176) pp 42-43. Cruzan v Director, Missouri Health Department [1990] USSC 122; 497 US 261 (1990).

^[216] HE v Hospital NHA Trust [2003] EWHC 1017 (Fam), [24].

^[217] Briginshaw v Briginshaw [1938] HCA 34, 60 CLR 336, 362.

^[218] HE v A Hospital NHS Trust [2003] EWHC 1017 (Fam) [46].

^[219] Ibid. [47]-[49].

^[220] Ibid. [52]

^[221] Re AF (unreported, NSW Guardianship Tribunal, matter no 2004/1867, 6 April 2004).

^[222] Stewart, C “Advance directives: Disputes and dilemmas” in Freckelton, I and Petersen, K, op.cit. (footnote 176) 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.

^[223] 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).

^[224] [1992] EWCA Civ 18; [1993] Fam 95.

^[225] Ibid. 113-114.

^[226] Darzins, P,et al op. cit. (footnote 202), 94-97.

^[227] Ibid., p 91

^[228] 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].

^[229] R (on the application of Burke) v General Medical Council [2005] EWCA Civ 1003 [50].

^[230] Northridge v Central Sydney Area Health Service [2000] NSWSC 1241 [24][2000] NSWSC 1241; , 50 NSWLR 549.

^[231] 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 176) pp 51-52. See also Skene, L, “The Schiavo and Korp cases: Conceptualising end-of-life decision-making” (2005) 13 JML 223.