I would rather die with two feet than live with one'l

'I would rather die with two feet than live with one'l;The Status and Legality of Advance Directives inAustralia.

John Blackwood LLB (Hons), Senior Lecturer in Law, University of Tamania, Chairman of theGuardianship Board of Tasmania.

I. IntroductionEvery human being of adult years and sound mind has a right to detennine (what shall be dOnewith his own body; and a surgeon who performs an operation without his patient's consentcommits an assault for which he is liable in damages.2

This famous statement from Me Justice Cardozo explicitly acknowledges the right of acompetent adult person to consent to or refuse medical treatment. The right is based onthe principle of self-determination. Me Justice McHugh has expressed the principle asfollows:

... the common law respects and preserves the autonomy of adult persons of sound mind withrespect to their bodies. By doing so, the common law accepts that a person has rights of controland self-determination in respect of his or her body which other persons must respect. Thoserights can only be altered with the consent of-the person concerned. Thus, the legal requirementof consent to bodily interference protects the autonomy and dignity of the individual and limitsthe power of others to interfere with that person's body.3

Recent decisions in both England4 and Canada5 have upheld the principle of selfdetermination and added that the principle entitles an individual to refuse treatment whichis beneficial or necessary even if death may result.6 That is, a capable adult patient has anabsolute right? to refuse medical treatment for reasons which are 'rational, irrational,unknown or even non-existent'.8

These were the words spoken by C, a 68 year old Jamaican man, when told by a surgeon that he had gangrenein his foot and that in order to save his life it would have to be amputated. C applied for an injunction to preventthe hospital amputating his foot in the future without his written consent. Mr Justice Thorpe in granting theinjunction expressly recognised C's right to indicate in advance a refusal of treatment.

2 Schloendoifv Society of New York Hospital (1914) 105 NE 92 at 93.3 Secretary, Department of Health and Community Services (NT) v J W B and S M B (Re Marion) (1992) 175

CLR 218 at 309-10.4 Airedale NHS Trust v Bland [1993] AC 789, Re T (adult: refusal of medical treatment) [1992] 4 All ER 649.5 Malette v Shulman (1990) 67 DLR (4th) 321, Fleming v Reid (1991) 82 DLR (4th) 298.6 Not everyone agrees that the principle is so settled or so certain in its application. Ian Kennedy in Treat Me

Right; Essays in Medical Law and Ethics, Oxford University Press, Oxford, 1988, p 341 said: 'the supposed rightto self-determination may not be the creature it is thought to be . . . its theoretical weaknesses are implicit in thefact that it rests on the vague and easily manipulated notion of consent. Once such theoretical weaknesses areidentified, it is but a simple step to weaken the right as it operates in practice. The persuasive power of paternalismsupplies the motive for this step to be taken.

7 In English law the only possible exception to the right is a case in which the choice to refuse treatment may leadto the death of a viable foetus (per Lord Donaldson in Re T op cit at 652). The Law Commission, MentallyIncapacitated Adults and Decision-Making: Medical Treatment and Research, Consultation Paper No 129, HMSO,London, 1993 [hereinafter The Law Commission (No 129)] discussed the exception of the viable foetus withoutreaching a firm conclusion but did say 'whatever the position in relation to a capable patient, we do not thinkthat any greater restriction should be imposed upon an anticipatory decision of a pregnant woman': ibid, pp 43,44. See also Manitoba Law Reform Commission, Discussion Paper on Advance Directives and Durable Powersof Attorney for Health Care, July 1990; Age Concern Institute of Gerontology and the Centre of Medical Lawand Ethics, The Living Will: Consent to Treatment at the End of Life, 1988 at 60 (hereinafter The Living Will,1988).

8 In Re T op cit, per Lord Donaldson at 652 and see: Sidaway v Bethlem Royal Hospital Governors [1985] 1 AllER 643 at 666.

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It follows that a medical practitioner administering non-consensual treatment to acompetent adult violates this right and could be criminally or civilly liable.9

The principle of self-determination exists so long as the person has the capacity tounderstand the nature and effect of any proposed medical treatment. If a person lacks thecapacity to consent to medical treatment that consent may, in some circumstances beprovided by a statutory appointed substitute decision-maker. Io However, the appointmentof a substitute decision-maker cannot protect or promote individual autonomy, dignity orself-determination because the individual will have little or no say in the appointment ofthe decision-maker or in the health care decision made on her or his behalf. I I

At the same time the principle could still be promoted if the law provided individualswith a mechanism of planning for their own incapacity with respect to health care decisionsand by giving people greater control over decisions affecting their own health care if andwhen they lose capacity to make those decisions for themselves.

There are essentially two ways that a competent adult can indicate what and/or howhealth care decisions should be made in the event that the individual subsequently becomesincompetent to make such decisions. A competent person may give instructions about heror his future health care in the event of future loss of competence. This is sometimescalled an advance directive or a living will. I2 Alternatively, an individual may choose toappoint or designate another person to make health care or other life styIe decisions on

9 In England: In Re Top cit, per Lord Donaldson at 653: 'The law requires that an adult patient who is mentallycapable of exercising a choice must consent if medical treatment of him is to be lawful ... Treating him withouthis consent or despite a refusal of consent will constitute the civil wrong of trespass to the person and mayconstitute a crime'. See also: Re W [1993] F 64 at 76.

In Australia: In Re Marion, op cit, Justice McHugh has said at 337: 'Every human being of adult years andsound mind has a right to determine what shall be done with his own body; and a surgeon who performs anoperation without his patient's consent commits an assault for which he is liable in damages'.

In Canada: In Malette v Shulman, op cit, Mrs Malette was awarded $20,000 'by way of damages for battery'because a physician administered a blood transfusion to her despite her express refusal.

10 For example, by a guardian with the power to consent to or refuse medical treatment and appointed pursuant tolegislation establishing the various Guardianship Boards and/or Tribunals. In New South Wales: GuardianshipAct (1987); Victoria: Guardianship and Administration Board Act 1986; South Australia: Guardianship andAdministration Act 1993; Western Australia: Guardianship and Administration Act 1990; Australian CapitalTerritory: Guardianship and Management of Property Act 1991; Northern Territory: Adult Guardianship Act 1988;Queensland: Intellectually Handicapped Citizens Act 1985; Tasmania: Guardianship and Administration Act 1995.The legislation in New South Wales, Tasmania and South Australia also provides that if a person is incapable ofconsenting to medical treatment then in most circumstances the 'person responsible' may provide the necessaryconsent. The 'person responsible', in hierarchical order, includes a spouse, carer, close friend or relative. See ibid:NSW: Part 5; Tas: Part 6; SA: Part 5. A number of States in the USA have also enacted so called family consentlaws which give authority to specified relatives to consent to health care for a person who is incapable of givingconsent. See, for example: Health Care Consent Act 1994 (Indiana) Ind Code 30-5-1-1 to 30-5-10-4; P King,'The Authority of Families to Make Medical Decisions for Incompetent Patients after the Cruzan Decision' (1991)19 Law, Medicine and Health Care 76.

11 The Australian Guardianship Acts all provide that in considering whether to appoint a guardian for a person andwho that person should be the Board must take into account the 'wishes of the person'. Additionally, the Boardmust be satisfied that the person proposed as guardian will act in the person's best interests and there is no conflictof interest. In most cases the person in respect of whom a guardianship order is sought will not be able to indicatewho they wish to be their guardian but the requirement to consider that person's wishes is a necessary andimportant procedural safeguard. See, for example, SA, s 5; NSW, s 4.

12 The term 'advance directive' will be used throughout this article in a restricted sense, meaning a direction givenin advance of incapacity and indicating the type of medical treatment the person would like to have or not tohave in the event that the person is no longer competent to decide. A range of terms have been used to describethis process, including advance declaration, anticipatory decision, instruction directive, mandate and mostcommonly, living will. The term living will is used in this article but only to refer specifically to an advancedirective which is concerned with the refusal of life-sustaining procedures in the event of terminal illness or apersistent vegetative state. The author is aware that it is becoming increasingly common to use the term 'advancedirective' to include not only a direction as to future medical treatment but also the appointment of an 'agent' or'proxy' to make health care decisions on behalf of the person if and when they subsequently lose capacity. See:K Stem, 'Advance Directives' [1994] 2 Medical Law Review 57; J Downie, 'Where There is a Will, There MayBe a Better Way: Legislating For Advance Directives' [1992] 12 Health Law in Canada 73; I Kennedy and AGrubb, Medical Law (2nd ed), Butterworths, London, 1994, p 1334.

272 'I would rather die with two feet than live with one'

her or his behalf should she or he become incompetent. This mechanism is called anenduring power of attorney or durable power of attorney.13

The originator of the concept of a living will was Kutner, who proposed the conceptin 196814 and the first State in America to introduce legislation was California with theenactment of the Natural Death Act in 1976.15 Currently, forty seven of the States of theUnited States and the District of Columbia have enacted a form of advance directivelegislation.16 The first generation of 'living will' statutes was concerned only with therefusal of life-sustaining procedures in the event of terminal illness or imminent death.They were criticised as being, amongst other things, too limited and linguistically vague}?and were followed by a second wave of statutes permitting the creation of durable powersof attorney specifically concerned with medical treatment decisions. 18 Subsequently, a thirdgeneration of statutes - the hybrid model - emerged combining provisions related toliving wills with the option of appointing a proxy decision-maker.19

Legislators in other jurisdictions20 have been slow to follow the lead of the United

13 The tenn Enduring Power of Attorney or EPA will be used throughout this article. The term 'Durable Power ofAttorney' is common in the United States but is not used in other jurisdictions. In Canada the term 'Health CareDirective' is used to include both a direction expressing treatment choices or the appointment of a proxy to makethose decisions. See Manitoba, Health Care Directives Act 1992, ss 1 and 5. The person executing the EPA willbe referred to as the 'maker' and the person appointed to make life-style decisions as the 'enduring guardian' or'proxy'. Other terms used in the literature and in legislation to describe the holder of the power to make lifestyle decisions include attorney for health care, agent, grantee, patient-appointed proxy, surrogate or representative.The tenn 'enduring guardian' is taken from the South Australian and Tasmanian Guardianship legislation. In bothjurisdictions a competent adult can appoint an enduring guardian and that person, subject to any conditions orrestrictions contained in the appointing document, has wide and extensive powers to make life-style decisionsincluding health care decisions in the event of the subsequent incapacity of the maker. See: Guardianship andAdministration Act (Tas), s 32(5) and Guardianship and Administration Act (SA), s 25.

14 L Kutner, 'Due Process of Euthanasia; The Living Will, A Proposal' (1968-69) 44 Indiana lAw Journal 539.15 Currently, California Health and Safety Code. Section 7185-7194.5. For a detailed analysis of the Californian

Natural Death Act, see, for example, E Flannery, 'Statutory Recognition of the Right to Die: The CalifornianNatural Death Act' (1977) 57 BUL Rev 148.

16 45 states have legislation that authorises living wills and the appointment of a health care proxy namely: Arizona,Arkansas, California, Colorado, Connecticut, Delaware, Florida, Georgia, Hawaii, Idaho, Illinois, Indiana, Iowa,Kansas, Kentucky, Louisiana, Maine, Maryland, Minnesota, Mississippi, Missouri, Montana, Nebraska, Nevada,New Hampshire, New Jersey, New Mexico, North Carolina, North Dakota, Ohio, Oklahoma, Oregon, Pennsylvania,Rhode Island, South Carolina, South Dakota, Tennessee, Texas, Utah, Vennont, Virginia, Washington, WestVirginia,Wisconsin, and Wyoming, while two states, Alabama and Alaska, have legislation that only authorises living wills.(Source: Choice in Dying, Legal Developments, Internet http://www.echonyc.com/choice/legal.htm).

17 For a detailed discussion of the first generation of living will statutes see: G Gelfand, 'Living Will Statutes: TheFirst Decade' (1987) Wisconsin lAw Review 737; C J Condie, 'Comparison of the Living Will Statutes of theFifty States' (1988) 14 J Contemp L 105.

18 See above footnote 15 and in addition 3 states, Massachusetts, Michigan and New York authorise the appointmentof a health care proxy but not the creation of a living will.

19 For a general discussion of these various models see: F Rouse 'The Role of State Legislatures After Cruzan:What Can - and Should - State Legislatures Do?' (1991) 19 lAw Medicine and Health Care 83.

20 Most provincial legislatures in Canada have enacted or are considering some form of legislation regarding advancedirectives. Quebec, Ontario, Manitoba, and Nova Scotia have passed and proclaimed legislation that codifiesrespect for advance directives into law. In British Columbia, legislation has been passed but not yet proclaimed.Newfoundland's An Act Respecting Advance Health Care Directives and the Appointment of Substitute HealthCare Decision Makers, was reintroduced on 16 March, 1995 and is currently awaiting committee study.

While no legislation exists on advance directives in some provinces, a few are studying the issue or consideringlegislation in this regard. Alberta had introduced legislation, the Advance Directive Act, however, it was droppedfrom the Order Paper when the legislative session ended in November 1994. In the Northwest Territories, thedevelopment of guidelines entitled Standards and Procedures for Advanced Treatment Directives for bothCoordinated Home Care Programs and Facility Based Long Tenn Care Programs, has been initiated by theDepartment of Health. In New Brunswick, a committee established to study advance health care directives haspresented its report to the Department of Justice. The Department intends to study the report to determine whetherlegislation is required. Prince Edward Island, Saskatchewan, and the Yukon have no current plans to introducelegislation or to study the issue.

In Australia, the South Australian Parliament passed the Natural Death Act in 1983 (now repealed and replacedby the Consent to Medical Treatment and Palliative Care Act 1995); the Northern Territory enacted a similar actin 1988. Victoria's Medical Treatment Act was passed in 1988 with substantial amendments in 1990 and 1992,while the Australian Capital Territory's Medical Treatment Act 1994 is the only other Australian legislation dealingwith advance directives. All the Australian legislation is discussed later in this article.

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States. Perhaps this is a good thing because, as noted above, the original concept of a'living will' has undergone far reaching and fundamental change since the original statutein California. The purpose of this article is to consider in some detail the concept of anadvance directive in its limited form, that is, as a mechanism for enabling a competentadult to indicate in advance the type of treatment she or he wants or does not want in theevent of subsequent incapacity. The article will examine the nature and scope of theadvance directive and ascertain how successfully or otherwise it has been adopted inAustralia.

II. What is an advance directive?

An advance directive that has legal effect and which is acted upon by the treating physicianis a certain way to extend patient autonomy. An advance directive can state in advancethe types of treatment which the patient would or would not find acceptable in certaincircumstances. An advance directive is most often used to refuse life-sustaining medicaltreatment21 in the event of a terminal illness or a state of persistent and permanentunconsciousness. As noted above, this type of advance directive is enshrined in legislationin most jurisdictions of the United States.22 However, it has been consistently argued thatlegislation that restricts advance directives to the refusal of treatment in cases of 'terminalillness' is too narrow and overlooks the needs of many other patients who wish to exercisecontrol over their medical treatment after they become incapacitated, such as those involvedin accidents,23 those who wish to express a consent rather than a refusal, and those whowish to choose one treatment rather than another.24 The most recent reports25 in this areahave all recommended that if legislation is enacted to give legal effect to advance directivesit must recognise the right of the competent adult to give directions about all health caredecisions taken on their behalf.26 Apart from the fact that in some circumstances a legallyeffective advance directive will promote autonomy by enabling competent individuals todetermine the course of their lives and deaths, there are other benefits.

Advance directives can remove the decision-making burden from the shoulders of

21 Most living will statutes exclude the provision of palliative care from the definition of medical treatment. AsGregory Gelfand, op cit, notes at 750-751, 'In defining the types of treatments which may be withheld, the vastmajority of living will statutes specifically exempt nutrition, hydration, comfort care and the alleviation of pain.Many other statutes which do not discuss the point probably were not intended to differ in substance. Under suchstatutes, food, water, comfort care and pain reduction techniques cannot be withdrawn. These restrictions producea dilemma in cases where the techniques necessary to reduce pain or maintain nutrition and hydration also prolongthe life and misery of the patient'. -

22 Above footnote 15.23 Most of the living will legislation in the United States would not cover the landmark case of Karen Quinlan who,

although in a persistent vegetative state and being sustained by a ventilator as a result of an accident was not'terminally ill'. For comment: R Veatch, 'Death and dying: the legislative options' (1977) 7 Hasting's Centre R5 at 6; L Heintz, 'Legislative hazard: keeping patients living against their wills' (1988) 14 Journal of MedicalEthics 82 at 85.

24 Manitoba Law Reform Commission, Self-Determination in Health Care (living Wills) and Health Care Proxies,Report No 74 at 4 [hereinafter Manitoba LRC (No 74)]; Law Reform Commission (No 129) at 38.

25 See above fn 23 and also Alberta Law Reform Commission Advance Directives and Substitute Decision Makingin Personal Health Care: A Joint Report of the Alberta Law Reform Institute and the Health Law Institute,Report No 64 at 21 [hereinafter Alberta LRC (No 64)], which recommended that the definition of health careextend to all 'personal care matters related to health, such as nutrition and hydration, personal hygiene, and choiceof residence!' at 22; Newfoundland Law Reform Commission Advance Health Care Directives and Attorneys forHealth Care Working Paper 6 at 46 [hereinafter Newfoundland LRC (WP6)].

26 The Queensland Law Reform Commission Report, Assisted and Substituted Decisions, Report No 49 at 346 and347 [hereinafter Queensland LRC (No 49)] has surprisingly gone full circle and excluded from the definition ofhealth care any medical treatment ibat, in the case of a terminally ill or PVS patient, would sustain life. Giventhat most advance directives or living wills are created by people who do not want their lives artificially prolongedin situations where there is no chance of recovery this recommendation can only be regarded as extraordinary.In practice it makes that part of the report dealing with advance directives and proxy decision-making relativelymeaningless.


family members or friends who are now often called upon to take responsibility for, or atleast be involved in, decisions about life-sustaining treatment.27 As the House of LordsSelect Committee on Medical Ethics noted in this context:

Another advantage suggested by witnesses was the relief that an advance directive could provideto the family of an incompetent patient. Relatives are often consulted about the treatment of anincompetent patient, and very often find it difficult or distressing to contribute to decision-making.The knowledge that they could be guided by the previously expressed wishes of the patient couldrelieve them of some of that burden.28

Similarly, the treating physician's decision to treat or not to treat is settled, thusremoving the burden of decision-making and unnecessary consultation with familymembers.29 Samuels puts it succinctly:

When the occasion arises, the doctor will know what to do and what not to do, in accordancewith the wishes of the patient. If, when the occasion arises, the patient is previously unknown tothe doctor, the doctor nonetheless knows the wishes of the patient - they are in the advancedirective, lodged with the GP. The doctor does not need to consult the relatives.30

However, perhaps the most significant advantage of an advance directive is that itencourages discussion between patients and health care professionals and between patientsand their families about important health care issues including death and dying.31 Theeducative and practical effects of an advance directive should not be under estimated.

There are, however, significant disadvantages and limitations to some aspects ofadvance directives. The literature is full of opinions roundly condemning the American'living-will' legislation ranging from almost total rejection32 of the concept to moremoderate suggestions for viable alternatives or substantial reform.33

III. Limitations and difficulties

Although advance directives are said to be an aid to patient self-determination, history hasshown they have proven to be so in limited circumstances. Part of the explanation for thislies in the historical origin of advance directives. This origin was the concern that peoplemay have their lives needlessly prolonged by medical interventions, thus concentrating the

27 J Lynn, 'Why I Don't Have a LiVing Will' (1991) 19 Law Medicine and HeaLth Care 101 at 104 in an articlegenerally sceptical about the value of living wills nevertheless recognises that: 'for another group of patients andfamilies, anxieties are best laid to rest by generating a formal advance directive. The formal document might bemore weighty and enduring than anyone surrogate or care giver. Also the discussion about priorities andpreferences might most naturally and easily be organised around the task of writing a formal advance directive'.

28 The report of The House of Lords Select Committee on Medical Ethics, HL Paper 21, HMSO, London, 1994,(hereinafter The House of Lords Select Committee).

29 J Downie op cit at 76 notes: 'Advance directives can remove the burden of treatment! non-treatment decisionsfrom the shoulders of physicians. Advance directives can also relieve the physicians uncertainty about whetherthe family statements accurately reflect the wishes of the patient'.

30 A Samuels, 'The Advance Directive (or Living Will)' (1996) 36 Medicine, Science and the Law 2 at 4.31 The House of Lords Report strongly endorsed the dialogue advantage at para 188. 'The preparation of an advance

directive can provide a valuable opportunity for dialogue between doctor and patient. This advantage was widelyrecognised. The BMA urged that such dialogue should be regarded not only as a potential benefit of the preparationof an advance directive, but as a necessary part of the process. Any patients who wish to draft advance directivesshould ensure that they are well Informed and do so with the benefit of medical advice. It is also recommendedthat this initiative should become part of a continuing dialogue between doctor and patient so that both are fullyapprised of the other's opinion'.

32 See J Lynn op cit; J Stone, 'Advance Directives, Autonomy and Unintended Death' (1996) 15 Monash BioethicsReview at 16 and Annas, 'Health Care Proxy and Living Will' (1991) 324 New England JournaL of Medicine1210.

33 L Emanuel and J Emanuel, 'The medical directive: a new comprehensive advance care document' (1989) 261JournaL of the American MedicaL Association 3288; D Orentlicher, 'Advance medical directives' (1990) 263JournaL of the American MedicaL Association 2365; D Morgan 'Odysseus and the binding directive: only acautionary tale?' (1994) 14 Legal Studies 411.

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focus on refusal of treatment and rejection of care rather than on more positive aspectssuch as treatment choices.

In addition, the current format and design of most standardised advance directives usevague terminology which invite problems of interpretation. What does the phrase 'I directmy physician to forgo artificial means and heroic measures' mean? Similarly, if a livingwill directs that life-sustaining treatment should cease when there 'is no reasonableexpectation of recovery from extreme physical or mental disability' it is far from clearwhen and in what circumstances treatment should cease.34 As one commentator has noted:'the imprecise terminology used in most living wills leaves open questions, such as whetherthe patient's condition makes the declaration [advance directive] operative and whetherthe proposed treatment is the type the declarant wished to have withheld'.35

To overcome these problems of vagueness and ambiguity, the recent trend has beentowards more medically specific directives in which certain life-prolonging procedures (forexample, antibiotics, ventilation, dialysis, enteral feeding, invasive surgery) are refused incertain life-threatening situations (for example, AIDS, advanced dementia). But as Docker36

has pointed out, this 'consequent medicalisation of the problem has its own inherentdangers, not least of which may be the patient's lack of medical knowledge'. Unless,therefore, the patient has discussed3? with her or his doctor the precise meaning of, say,'enteral feeding' or discussed the benefits and drawbacks of various options, the decisionsmade in the advanced directive will be uninformed.

However, on a more general level, the very nature of the document - an advancedirective - that is to come into effect at some unforeseeable date in the future, meansthat in some cases, especially those concerning end of life decisions, the person makingthe directive must try and predict medical problems not yet in existence. It is impossiblefor a person to contemplate every treatment choice and provide instructions regarding them.This may arguably lead, some or many years later, to a decision by a doctor to ignore thedirective because she or he believed the person making it was not sufficiently informed.38

The Western Australian Law Reform Commission,39 in addition to citing the limitationsmentioned above, saw some practical problems with advance directives including notice

34 Jim Stone, op cit, examined in detail the Midwest Bioethics Centre Living Will which supposedly satisfied thestringent requirements of Missouri and Kansas. The living will reads as follows:If at any time I should have an incurable injury, disease, or illness certified to be a terminal condition by twophysicians who have personally examined me, one of whom shall be my attending physician, and the physicianshave determined that my death will occur whether or not life-sustaining procedures would serve only to artificiallyprolong the dying process, and I am unable to participate in decisions regarding my medical treatment, I directthat such procedures be withheld or withdrawn, and that I be permitted to die naturally with only the administrationof medical or the performance of any medical procedure deemed necessary to provide me with comfort.In the pages that follow, Stone destroys this living will and others like it. His major objections are that there isno definition or account of the operative term 'terminal condition', or 'life-sustaining procedures' and he querieshow are the doctors to certify and what do they certify?

35 C Mooney, 'Indiana's Living Wills and Life-Prolonging Procedures Act: a reform proposal' (1987) 20 IndianaLaw Review 539 at 545. .

36 C Docker, 'Some shortcomings of advance medical directives (living wills) following the House of Lords SelectCommittee on Medical Ethics Report: a case for radical redrafting', a paper published by the Voluntary EuthanasiaSociety of Scotland at 1.

37 C Docker op cit at 2 suggests as a starting point for discussion between doctor and patient and as a safeguardagainst insufficient knowledge that living will documents be accompanied by explanatory notes incorporatingvignettes. These, he suggests, should use simple language, preferably with picture-book style vignette explanations.

38 K Stem op cit at 57 makes the same point: 'Advance directives are binding only if clearly expressed an}1 applicablein the circumstances in which treatment is proposed. What is not addressed [in the Law Commission's Report]is how the proposed legislation will ensure that patients become fully informed and what level of information isnecessary to ensure that the advance directive is effective. Moreover, the difficulties in ensuring that patients aresufficiently informed are magnified when the decision is to take effect at some future date, in response to a largelyunknown of set circumstances. Consequently, these twin requirements which form the basis of proposals onanticipatory decisions might in every case enable an advance directive to be overridden'.

39 Law Reform Commission of Western Australia, Report on Medical Treatment for the Dying, No 84, February1991 [hereinafter Western Australia LRC (No 84)]


to doctors who may not be the patient's usual doctor, revocation and amendment. TheReport also highlighted the doubts that exist over when an advance directive is to beactivated:4O

Should the triggering event be incompetence alone, or incompetence with the addition of aparticular condition or disability, or incompetence with the addition of terminal illness?Incompetence alone may require the living will to be implemented in circumstances which manywould regard as inappropriate, for example, a moderate degree of dementia without otherdisability. Incompetence plus specified conditions may lead to problems because of theimpossibility of itemising every relevant clinical circumstance, and the uncertainty in interpretingthose which are specified. Incompetence plus terminal illness does not capture all thecircumstances in which many people would wish a living will to become operative. It may alsocause problems of intetpretation as to the meaning of 'terminal illness.41

IV. Solving the problems with advance directives

Some of the practical limitations associated with advance directives can be resolved bybetter and more specific drafting - clarifying the language used, avoiding confusing termsand requesting individuals to express their wishes clearly. In the more difficult area ofinterpretation, that is in deciding whether the directive is applicable to the particularcircumstances confronting the patient and the doctors, there are some solutions.42

First, the need to anticipate the exact situation, noting for example, specific diseases orlisting a number of 'life-prolonging' procedures in an attempt to 'cover the field' may notbe necessary if the advance directive was supplemented by a statement of the individual'sgeneral values - called 'values history'43 - which could be applied to particularsituations. A 'values history' statement can be particularly useful in situations where thereis considerable doubt about the patients preferences. As Docker has noted,

... patient choices concerning refusal of treatment do not vary so significantly if the outcome istotal recovery, on the one hand, or constant and unrelievable pain on the other. But marked

40 Ibid, P 12, para 2.6.41 Recent legislation rejects 'terminal illness' as the triggering incident to activate an advance directive. All

recommended incompetence as the sole test. The Manitoba Health Care Directives Act 1992 is typical. Section6(1) reads: 'a directive becomes effective when the maker (a) ceases to have capacity respecting a proposedtreatment or (b) is unable to communicate her or his wishes respecting a proposed treatment and continues to beeffective for the duration of the incapacity or the inability to communicate'. See also the Law Commission Report(No 129), para 3.22.

42 Stem op cit at 69 argues that in the absence of disagreement between the doctor and the patient's family or carersthe scope of the directive should not be in issue. Where there is full agreement between the parties the patientshould be treated in accordance with his or her wishes. But as Stone, op cit at 28, points out, even if the livingwill appears clear and unambiguous the practical results may be tragic; he cites, from a letter written by a PhillisJ Robb to the American Medical Association News, 12 July 1993 at 21:

'My mother, at 73 and in excellent health, entered the hospital for her second hip replacement. After six days,she left the hospital and entered a transitional care unit. On entry she was given a standard living will for herconsideration. She signed it, not adding any special instructions; she did not take it seriously enough to evenmention to us.

In our state, the living will takes effect only if the person is terminally ill and unable to communicate. It is ashort simple form, and the language is clear. Regardless, a staff person wrote on mother's record 'no-code,patient's request'. The family was not informed.

On the 11th day after surgery, mother suffered cardiac arrest due to an embolism. The staff did not call adoctor or attempt to treat her in any way; they did not wish to "go against her wishes". They stayed by her sidefor 20 minutes while she died. My reaction was shock and disbelief.

Stone concludes at 29 that advance directives are 'often dangerously confused, even when they least appear tobe so ... given the procedural chaos, incompetence, and high turnover endemic in so many institutions in whichadvance directives are implemented ... signing one is a fool's gamble'.

43 See generally: D J Doukas and W Reichel, Planning for uncertainty: a guide to living wills and other advancedirectives for health care, John Hopkins University Press, 1993, particularly chapter 4, 'The value of values'; PNathanson 'The Values History: An Innovation in Surrogate Medical Decision Making' (1990) 18 Law Medicineand Health Care 202.

John Blackwood 277

difference in personal preferences are more apparent if the outcome involves such grey areas asparalysis and constant shortness of breath.44

He continues:

For these grey areas, the health team must be acquainted with the patient's individual preferencesin order to decide if the 'result' of say, intensive care, would be better by the patient's terms ofreference than a merely short prolongation of life.45

A 'values history' form46 gives an indication of the patient's preferences. The documentsets out a number of scenarios and asks the patient to score on a scale of one ('muchworse than death: I definitely do not want life-sustaining treatment') through to five ('muchbetter than death: I would definitely want life-sustaining treatment'). Sample questionsasked could be:

* Permanently paralysed. You are unable to walk but can move around in a wheelchair.You can talk and interact with other people.

* Permanently unable to speak meaningfully. You are unable to speak to others. Youcan walk on your own, feed yourself and take care of daily needs such as bathing anddressing yourself.

* Permanently in pain. You are in severe bodily pain that cannot be totally controlled orcompletely eliminated by medications.

* Permanently mildly demented. You often cannot remember things, such as where youare, nor reason clearly. You are capable of speaking, but not capable of rememberingthe conversations; you are capable of washing, feeding and dressing yourself and arein no pain.

* Being in a short term coma. You have suffered brain damage and are not consciousand are not aware of your environment in any way. You cannot feel pain. You arecared for by others. These mental impairments may be reversed in about one weekleaving mild forgetfulness and loss of memory as a consequence.

The physician faced with such a document is likely to be better informed about the patient'spreferences and in a position to apply current medical expertise and knowledge to thepatient's condition.

A second solution to meet the uncertainty and 'changed conditions' problem is for theindividual to appoint another· person, called an enduring guardian or proxy, through anenduring power of attorney to make health care decisions in particular situations accordingto general values either discussed at the time of the proxy's appointment or via anappropriate advance directive. The value of an enduring power of attorney is that it survivesincapacity. It enables the maker to appoint the person she or he wants to make health caredecisions for her or him in the future. In brief form the advantages47 of an EPA are:* to overcome ambiguities or inconsistencies in an advance directive.* to resolve the problem of 'changed conditions'. The proxy can apply the person's

values to the new or different situation that has arisen.* to overcome the lack of knowledge of the medical possibilities by discussion between

the proxy and the health professional.

44 op cit at 2. Author's emphasis.45 Ibid at 3.46 For an excellent example of a values history form see the model developed by C G Docker and available from

C G Docker, BM 718, London WCIN 3XX, United Kingdom. The examples listed below are extracted from thevalues history statement developed by Docker.

47 See for discussion: A Montgomery, 'Power Over Death: The Final Sting' in Robert G Lee and Derek Morgan(eds), Death Rights: Law and Ethics at the End of Life, Routledge, London, 1994, pp 37-53; D Orentlicher opcit at 2366; L Emanuel and E Emanuel op cit at 3289; R Creyke, 'Privatising Guardianship - The EPAAlternative' (1993) 15 Adelaide Law Review 79-103.


* to preserve patient autonomy. The delegation of authority may be broad or limited toa number of specific types of medical treatment.

There are of course some negative features and these are well documented in theliterature.48 Chief among them, as Montgomery observes,49 is the possibility that the personappointed will not in fact apply the criteria which the patient would have desired. Theproxy might operate on the basis of what they believe is the best for the patient. In thesecircumstances the proxy's decision is less an exercise of patient autonomy and more theproxy's decision for the patient. It has also been noted that in some cases the proxy'sethical and psychologic burden may be overwhelming. Willingness to withdraw lifesustaining treatment decreases from 70% to 46% when the decision is not for oneself butrather for a relative.5o

However, despite the limitations, the EPA is a valuable way to preserve'the principle_of self-determination. The most recent reports51 and statutory enactments52 have allsupported and provided for the creation of an EPA for lifestyle matters. This trend isbecoming evident in Australia. The Australian position in relation to EPA's and how theyrelate to advance directives is considered briefly later in this article.

v. Legislation or common law?

One of the issues raised in relation to advance directives is whether legislation is neededto give legal effect to the document. Without legislation it is said that advance directivesmay represent a 'non-legally binding indication of the wishes of the patient which mayormay not have a morally persuasive effect on the patient's family and the medicalpractitioner responsible for the patient's medical treatment' .53 Creyke agrees:54

Even in those places in which there is no legislative recognition of living wills, an advancedirective made by someone, although not legally binding, can be a useful guide.55

It was this expressed doubt over the validity of an advance directive at common lawwhich led to demands for legislation in many American states56 and in Australia.57

However it can be strongly argued that the need for legislation to validate an advancedirective or to enforce the right of a competent adult to indicate in advance whether ornot she or he consents to or refuses treatment is no longer necessary. The common lawnow recognises the right of an individual not only to refuse medical treatment even if thattreatment is beneficial or life-saving but 'the same principle applies where the patient's

48 See articles referred to ibid and in addition J Stone, 'Advance Directives, Autonomy and Unintended Death'(1996) 15 Monash Bioethics Review 16 at 30-33.

49 Op cit at 49.50 L Emanuel and E Emanuel op cit at 3289.51 See footnotes 23, 24, 25 and 27.52 See footnotes 6, 19 and 40.53 D Lanham and B Fehlberg, 'Living Wills and the Right to Die With Dignity' (1991) 18 Melbourne University

Law Review 329 at 331.54 R Creyke, Who Can Decide? Legal Decision Making For Others, Aged and Community Care Service

Development and Evaluation Report, No 19, AGPS, Canberra, 1995, p 276. Author's emphasis.55 The Alberta Law Reform Commission, op cit, agreed with these views noting at p 4: 'It is generally assumed

that an advance health care directive (often referred to as a living will) has no legal force in the absence oflegislation, but recent case law from Ontario casts significant doubt on this assumption. The position under Albertalaw remains uncertain'.

56 For a very brief survey see I Kennedy and A Grubb, Medical Law (2nd ed) Butterworths, London, 1994, pp1338-9.

57 See, for example, the earliest report in Australia dealing with the issue of dYing with dignity: the SocialDevelopment Committee of the Victoria Parliament, Report upon the options for Dying with Dignity, Final Report,April 1987 [hereinafter Social Development Committee (Vic)], pp 69-72 and the latest report dealing with assistedand substitute decision-making generally: Queensland Law Reform Commission (No 49), see particularly vol 3,'Summary of Recommendations'.

John Blackwood 279

refusal to give his consent has been expressed at any earlier time, before he becameunconscious or otherwise incapable of communicating it' .58

In addition there is now clear judicial authority that a doctor who abides by a clearlyexpressed refusal of treatment would be acting lawfully.

In cases of this kind, there is no question of the patient having committed suicide, nor thereforeof the doctor having aided or abetted him in doing so. It is simply that the patient has, as he isentitled to do, declined to consent to treatment which might or would have the effect of prolonginghis life, and the doctor has, in accordance with his duty, complied with his patient's wishes.59

The Canadian case of Malette v Shulman60 provides a striking endorsement of theseprinciples and further indicates that a doctor who refuses to acknowledge the existenceand validity of the advance directive will be acting unlawfully in administering treatment.Mrs Malette was seriously injured in a car accident. She was taken to hospital, unconsciousand having lost a lot of blood. A blood transfusion was medically indicated. A nurse founda signed card in her purse which stated:

NO BLOOD TRANSFUSION!

As one of Jehovah's Witnesses with fmn religious convictions, I request that no bloodor blood products be administered to me under any circumstances. I fully realise theimplications of this position, but I have resolutely decided to obey the Bible command:"Keep abstaining ... from blood." (Acts 15:28, 29). However, I have no religiousobjection to use the nonblood alternatives, such as Dextran, Haemaccel, PVP, Ringer'sLactate or saline solution.

The treating physician, Dr Shulmann, was advised of the card but eventually determinedthat a blood transfusion was necessary to save Mrs Malette's life. Mrs Malette subsequentlyrecovered, and sued Dr Shulman for damages for battery. The Ontario Court of Appeal61

upheld her claim and awarded $20 000 damages. The Court said, in part:62

A doctor is not free to disregard a patient's advance instructions any more than he would be freeto disregard instructions given at the time of the emergency. The law does not prohibit a patientfrom withholding consent to emergency medical treatment, nor does the law prohibit a doctorfrom following his patient's instructions. While the law may disregard the absence of consent inlimited emergency circumstances, it otherwise supports the right of competent adults to makedecisions concerning their own health care by imposing civil liability on those who perfonnmedical treatment without consent.63

58 Airedale NBS Trust v Bland [1993] AC 789 per Lord Goff at 864. See also to the same effect Lord Keith at857. Similar remarks were made by members of the Court of Appeal where Sir Thomas Bingham MR referredto the 'important principle' that a medical practitioner must comply with clear instructions given by an adult 'ofsound mind' as to the treatment to be given or not to be given in certain circumstances, even if by the time thecircumstances exist, the patient is unconscious or no longer of sound mind: [1993] 2 WLR 316 at 334. ButlerSloss U at 342 noted the agreement of counsel that the right to reject treatment extends to deciding not to accepttreatment in the future by way of advance directive or 'living will' ..

59 Ibid at 864.60 (1990) 67 DLR (4th) 321.61 Robins, Catzman and Carthy JJA.62 Ibid at 330.63 The other significant Canadian decision is Fleming v Reid (1991) 82 DLR (4th) 298 where again the Ontario

Court of Appeal upheld the legal effect of refusal in advance of treatment despite the fact there was no legislationin force to validate the directive. At 310 the court said:

'A patient, in anticipation of circumstances wherein he or she may be unconscious or otherwise incapacitatedand thus unable to contemporaneously express his' or her wishes about a particular form of medical treatment,may specify in advance his or her refusal to consent to the proposed treatment. A doctor is not free to disregardsuch advance instructions, even in an emergency. The patient's right to forego treatment, in the absence of someoverriding societal interest, is paramount to the doctor's obligation to provide medical care. This right must behonoured, even though the treatment may be beneficial or necessary to preserve the patient's life or health, andregardless of how ill-advised the patienfs decision may appear to others'.


The other significant decision at common law is Re T.64 T, aged 20, was injured in acar accident and was admitted to hospital. She was 34 weeks pregnant. After a conversationwith her mother who was a Jehovah's witness, T refused a blood transfusion, laterconfrrming that decision by signing a refusal fonn. An application was made to the Courtfor a declaration that in the circumstances65 it would not be unlawful to administer thetransfusion. The Court of Appeal confirmed the right of a competent adult patient to makean anticipated refusal of treatment: 'an anticipatory choice, which if clearly established andapplicable in the circumstances - two major ifs - would bind the practitioner'.66

In Re T, the Court of Appeal identified three elements of a valid anticipatory direction:

(1) the patient must have the capacity to consent or refuse the treatment (that is,competence);

(2) the patient must have anticipated and intended her or his decision to apply to thecircumstances which subsequently arise (anticipated scope); and

(3) the patient's decision must be free of undue pressure or influence [or one could addany other factor that may vitiate consent] (undue influence).

While each of these elements clearly should be present, there is a danger that if theyare applied too rigidly the patient's right to refuse the medical treatment will be greatlycurtailed.67 Particularly this is so in relation to the anticipated scope of the refusal. LordDonaldson indicated that the advance directive had to be 'clearly established and applicablein the circumstances'.68 The refusal would be ineffective if the factual situation that actuallyarises falls outside the scope of the refusal or if the assumptions upon which it was basedhad been falsified.69 This is exactly what happened in Re T. The Court found that MissT had been misled by the doctor and nursing staff as to the range of alternative treatmentsavailable to blood transfusions and about the possible need for a transfusion in any event.Her refusal did not anticipate the emergency that actually arose and was thus not clearlyestablished and therefore ineffectual.

As Kennedy and Grubb point out,70 if too strict a view is taken of scope it may tumout to be a Trojan horse allowing the courts (and therefore doctors) to undermine the law'sapparent commitment to the patient's right to self-determination. If the court wishes, it canrequire that the patient specifically give her or his mind to the precise circumstances71 thathave arisen, and indicate that should they arise, the patient refuses treatment. This maywell be a hard criterion to satisfy. A clear statement by the patient refusing treatment 'inany circumstances'72 will clearly suffice, however refusals based on false premises ormisunderstandings, or that fail to appreciate the seriousness of the consequences73 whichcould ensue, or that do not fully appreciate the range of alternatives that might be availablemay very well be insufficient and the refusal consequently ineffective.

64 [1992] 4 All ER 649.65 The circumstances being that T's refusal was invalid because she lacked the capacity to refuse as a result of (i)

her weakened medical condition, being injuries received in the accident and as well as treatment at the hospitaland (ii) she had been subjected to the undue influence of her mother.

66 Ibid, per Lord Donaldson at 653.67 A Grubb, 'Treatment Without Consent: Adult Re T' [1993] 1 Medical Law Review 83 at 85.68 Re T [1992] 4 All ER 649 at 653.69 Ibid at 663.70 Op cit at 1328.71 Authors emphasis.72 For example, Malette v Shulman op cit.73 For example, in Werth v Taylor (1991) 475 NW (2d) 426 the plaintiff was a Jehovah Witness and had signed a

form refusing blood transfusions. After the birth of twins complications set in and Dr Taylor, the surgeon, decideda blood transfusion was necessary to save the plaintiffs life. When told of the refusal he said, 'that maybe, butshe needs the blood'. The plaintiffs action for battery was unsuccessful. The Michigan Court of Appeal held thatbecause her prior refusals had not been made when her life was hanging in the balance or when it appeared thatdeath might be a possibility if a transfusion were not given her refusals were not contemporaneous or informed.

John Blackwood 287

Despite the ongoing difficulties the courts (and health care professionals) may havewith the scope and basis of an advance directive, it is now settled that at common law,legislative backing is not needed to validate the directive.74 That is certainly the positionin the United Kingdom75 and Canada. The issue' has not arisen yet in Australia but thereis no reason to suspect that the High Court would do other than confrrrn the English andCanadian authorities. The decision of the High Court in Re Marion76 was a strongendorsement of the principles of self-determination and personal autonomy;' s77 and canclearly be extended to cover advance directives.

However there may be other reasons why it is preferable to introduce legislation.78

Legislation can make it clear that a doctor is obliged to act in accordance with a directiveregardless of the circumstances79 and that legal sanctions will apply to a doctor who failsto comply.8o Similarly, formal matters such as the form, witnessing and revocation ofdirectives can be simply accommodated by legislation. Legislation could exempt doctorsfrom liability if they acted in good faith and with reasonable care in accordance with adirective subsequently shown to be invalid, for example, because it had been previouslyrevoked.81 Finally, it may be thought appropriate to place limitations on the scope ofanticipatory decisions, for example, making ineffective a directive that purports to refusepalliative care.82

74 The Law Commission (No 129) concluded at para 3.7 that, 'in England and Wales, the dicta in Re T, togetherwith those in Airedale NHS Trust v Bland in both the Court of Appeal and House of Lords indicate that ananticipatory decision which is "clearly established" and "applicable in the circumstances" maybe as effectiveas the current decision of a capable adult'. Similarly The House of Lords Select Committee reported at para 264that, 'legislation for advance directives generally is unnecessary. Doctors are increasingly recognising their ethicalobligation to comply with advance directives. The development of case law is moving in the same direction ...we suggest that it could well be impossible to give advance directives in general greater legal force withoutdepriving patients of the benefit of the doctor's professional eXPertise and of new treatments and procedures whichmay have become available since the advance directive was signed'. Finally Morgan, op cit, has concluded at425 that 'from the course of judgments in the Court of Appeal and speeches in the House of Lords it is nowclear that English law, at least, recognises the validity and force of previously expressed intentions, in the formof advance directives, where medical treatment is concerned'.

75 In addition to the cases cited above see also Re C (Adult: refusal of medical treatment) [1994] 1 All ER 819discussed below and Secretary of State for the Home Depanment v Robb [1995] 1 All ER 679.

76 Secretary, Depanment of Health and Community Services (NT) v JWB and 5MB (1992) 66 AUR 300.77 Ibid at 304, 317-318.78 See generally: D Lanham and B Fehlberg op cit at 331-335 and C Schlyter, Advance Directives and Aids, Centre of

Medical Law and Ethics, King's College, London, 1992, cited in I Kennedy and A Grubb, op cit, pp 1345-1350.79 The House of Lords Select Committee, op cit, para 205.80 The Victorian Medical Treatment Act 1988 contains the offence of medical trespass which makes it an offence

to 'undertake or continue to undertake any medical treatment if the medical practitioner knows that a refusal oftreatment certificate is current' (s 6). The penalty of 5 penalty units ($500) is derisory.

Loane Skene in a paper entitled 'Refusal of Treatment and Limits of Patient Autonomy', delivered to theAustralian Bioethics Association's 4th National Conference, Brisbane, 25 and 28 September 1995, makes thesame point commenting that doctors in Victoria may well take the approach of 'treat and damn the consequences!'

81 Section 22 of the Manitoba Health Care Directive Act 1992 provides: 'No action lies against a person whoadministers or refrains from administering treatment to another person by reason only that the person (a) hasacted in good faith in accordance with the wishes expressed in a directive or in accordance with a decision madeby a proxy; or (b) has acted contrary to the wishes expressed in a directive if the person did not know of theexistence of the directive or its contents'.

See also Law Commission (No 129), op cit, para 3.35.82 The Law Commission (No 129), op cit, para 3.24, argued that there may be a case for placing some limitations

on the scope and effectiveness of an advance directive, given that 'the patient will suffer the consequences onlyafter it is too late for him to change his own mind'. The Law Commission concluded that a person should nothave the right to refuse basic care or pain relief in advance and that the acceptability of palliative care shouldonly be judged according to the Person's current needs and wishes. The Law Commission did not regard thislimitation as a 'significant infringement of the patient's rights of self-determination' (para 3.25). This issue isdiscussed in more detail below at pp 32-33.


VI. Legislation in Australia?

Only two States and both the Territories have enacted legislation to provide for a limitedform of advance directive. The following table outlines the major features of the respectivelegislation. Brief comment follows in relation to the major headings.

VII. Scope of the directives

Only South Australia and the Northern Territory have enacted legislation which is in areal sense an advance directive. Both jurisdictions permit adults to stipulate in advance thetype of treatment they do not want and in South Australia, the type of treatment they wantin the event of a future occurrence.83

Under the Victorian and the Australian Capital Territory legislation a person may onlyrefuse medical treatment for a' current condition.84 While the requirement of a currentcondition avoids the problem of trying to predict conditions and/or treatment which mayor may not eventuate, the legislation only promotes patient autonomy and selfdetermination in a very limited way. A person who refuses medical treatment for a currentcondition and then loses competence will have their advance directive recognised and 'actedupon provided the quite stringent prerequisites set out in the legislation have been observed.There is simply no provision in the legislation for an advance directive to apply to acondition that is not currently existing. In addition, if the person's condition has changedso that it is 'no longer current' the directive ceases to apply.85 Apart from questions suchas - who decides if the 'condition' has ceased to be current? And how is this measuredor judged and by whom? - these provisions86 only serve to reinforce the restrictive anddisempowering nature of the legislation.

It is also arguable that the Victorian and Australian Capital Territory legislation isotiose.87 The common law clearly allows a competent person to refuse medical treatmentfor any current condition whatever the expected outcome.88 That refusal will also berecognised in the event of subsequent incapacity.89 The only possible advantage inlegislating for a 'refusal certificate' can be to exempt the health professional from liabilityin the event that he or she fails to carry out the treatment and the person dies.9o

While the scope of the South Australian legislation is wider - allowing for the consentand refusal of treatment in advance, it is still in another sense unduly narrow. An advancedirective will only come into effect if the person is in the 'terminal phase of a terminalillness or in a persistent vegetative state'91 and additionally, at that time, lacks capacity.The legislation does not enable a person to stipulate in advance what type of treatment

83 SA Act, s 7.84 Vic Act, s 5; ACT Act, s 6. Current condition is not defined in either Act.85 Section 7(3) of the Victorian Act reads: 'a refusal of treatment certificate ceases to apply to a person if the medical

condition of the person has changed to such an extent that the condition in relation to which the certificate wasgiven is no longer current'. The ACT Act is to the same effect in that a health professional shall not complywith a direction unless 'the direction complies with this Act' [sI2(a)].

86 Above footnote 87.87 otiose: adj. Serving no practical purpose; not required. The Pocket Oxford Dictionary.88 See Re T and cases cited in footnotes 57, 62 and 74.89 Ibid.90 But there would be no liability at common law in the event that a medical practitioner in respecting the directions

of a competent person, acceded to her or his wishes and did not administer treatment. The opposite is in fact truebecause a failure to respect the advance directive not to treat will result in civil or criminal liability for battery.See Malette v Shulman op cit.

91 Section 3 defines terminal illness as 'an illness or condition that is likely to result in death'; and terminal phaseof a terminal illness means 'the phase of the illness reached when there is no real prospect of recovery or remissionof symptoms (on either a permanent or temporary basis)'. Persistent vegetative state is not defined.

John Blackwood 283

SA92 VICTORIA93 ACT94 NT95

Scope of DirectiveRefuse or withdraw treatment I I I IAuthorise or request treatment ITerminal illness or PVS only I IAny current condition I IType of treatmentEither generally, or 1* I I 1*of a particular kind, 1* I I 1*except palliative care I I I(* by implication)'Triggering' incidentTerminal illness ITerminal illness and I

incapacityIncapacityNo triggering incident needed I IPrerequisitesOf 'sound mind' I I I IDegree of capacity stipulated no no no no

or defined18 years of age or over I I I IFormalitiesIn, writing, I I I IOrally or in any other way I ISignature I I

* signed personally, or I I I I* at the direction of I

Witnesses* number 1 2 2 2* restrictions

--= in each other's I Ipresence

- must include a Imedical practitioner

- excludes treating Imedical practitioner

- must be authorised IPrescribed form I- I I IRevocationIn writing, or + I I +

continues

92 Consent to Medical Treatment and Palliative Care Act 1995 (hereinafter SA Act).93 -Medical Treatment Act 1988 (hereinafter Vic Act).94 Medical Treatment Act 1994 (hereinafter ACT Act).95 Natural Death Act 1988 (hereinafter NT Act).


SA92 VICTORIA93 ACT94 NT95

Orally or any other way (+ + j j +Revocation possible. Noformal requirements)

Medical practitioner need notcomply with a directive if:

Patient's condition is no j jlonger 'current'

He/she believes it does not j jcomply with the Act

The direction has been j j j jrevoked or is intended to berevoked

The patient lacked capacity at j j jthe time of implementingdirective

Protection from liability:Civil j j jCriminal j j j jProfessional misconduct j jPenalty for failure to carry None j None None

out directive

she or he wants or does not want except in end of life situations. As Lanham and Fehlberghave noted:96

Living wills executed pursuant to legislation that is limited to extraordinary measures in the eventof terminal illness will not give legal effect to the decisions of patients suffering from chronic orslowly deteriorating conditions such as multiple sclerosis or Alzheimer's disease, nor of patientswith stable disabilities, such as brain damage resulting from stroke or accident, or patients whowish to refuse treatment such as blood transfusions on reI~gious or other grounds.

A Jehovah Witness direction refusing a blood transfusion in 'any circumstances' wouldnot be effective under the South Australian legislation.97

The Northern Territory legislation has probably reached its use-by date. Its forerunner,the Natural Death Act 1983 (SA) was repealed by the new South Australian legislation.98

The South Australian Select Committee on the Law and Practice relating to Death andDying99 (hereinafter The South Australian Committee) identified a number of practicaldifficulties lOO with the Natural Death Act and a number of commentators have also

96 D Lanham and B Fehlberg op cit at 344.97 But it would be effective at common law in South Australia.98 Consent to Medical Treatment and Palliative Care Act 1995, Schedule 3, s l(a).99 Second Interim Report, P P No 185.100 Ibid. Chapter headed 'Introduction to the Report: The Law', pp 3-4. The Committee: 'found little understanding

or, indeed knowledge of the provisions of the Natural Death Act' and identified the usual problems with advancedirectives, that is, changed conditions including advances in medical expertise/technology, lack of informationand knowledge on the person's part and the fact that the Act only applied to terminal conditions thus ignoring'other medical conditions which require decisions to be made on behalf of an unconscious patient or one who ispermanently or temporarily legally unable to make decisions for himself or herself (p 4). Despite these criticisms,the new South Australian legislation is no real improvement on its predecessor because in the area of advancedirectives it still only applies when a person has a terminal illness or is in a PVS.

John Blackwood 285

highlighted weaknesses in the legislation. 101 The scope of the Northern Territorylegislation - which only applies to refusal of treatment for 'extraordinary measures'102 inthe event of terminal illness - is unnecessarily limited and restrictive. The legislation isa reflection of the first phase of living will legislation in the United States and is nowoutdated.

VIII. Triggering incident

'Any legislation which recognises the legal effect of anticipatory treatment decisions ...must specify at what point the advance directive is to be activated' }03 In South Australiathere are two triggering incidents: the person must be in the 'terminal phase at a terminalillness or in a persistent vegetative state and be incapable of making decisions aboutmedical treatment' .104 There is unlikely to be much dispute about whether the patient isin the terminal phase of a terminal illness or in a persistent vegetative state. The opinionsof the treating physicians and other health professionals should be determinative. But thequestion of capacity or lack of it, is perhaps another matter. Surprisingly the Act does notdefine the phase 'incapable of making decisions about medical treatment' .105 In most casesthe issue will not arise. If the patient is comatose or otherwise clearly unable tocommunicate her or his wishes, the issue of competence is uncontroversial. If, however,this is not the case and in addition there is some dispute between the patient, the doctorsor the patients' family and friends, the issue of the patient's competence may becontroversial. It may be inappropriate to let the doctor, as one of the parties interested inthe outcome of that determination, decide. 106 An obvious solution would be to refer thematter to an independent third party for a confmnation of incompetence. In this regard thevarious Guardianship Boards and Tribunals that exist in most Australian States wouldseem a suitable choice.107

As the legislation in Victoria and the Australian Capital Territory does not recognisethe legal effect of anticipatory treatment decisions, there is no triggering incident. Thelegislation applies to competent and incompetent patients. As noted, the legislation allowsa person to issue a directive or certificate refusing treatment for a current condition.Provided the conditions set out in the legislation are satisfied, a doctor is bound by the

101 See Lanham and Fehlberg op cit at 337 et seq, Mendelson, 'Medico-legal aspects of the "right to die" legislationin Australia' (1993) 19 Melbourne University Law Review 112 at 115 et seq. ~

102 Defined in section 3 as follows: 'means medical or surgical meaSures that prolong the life, or are intended toprolong life by supplanting or maintaining the operation of bodily functions that are temporarily or permanentlyincapable of independent operation'. While slightly better than the phrase 'heroic measures' used in the contextof euthanasia decisions, the phrase is nevertheless vague and devoid of any useful analYtical content. As Gelfand,op cit, has noted at 753: 'References to the extraordinary nature of treatments convey little more than a conclusionthat the particular treatment should be withdrawn. If the word "extraordinary" is given, its commonly understoodmeaning, today's extraordinary treatment will be tomorrow's ordinary treatment as its use becomes accepted. Thepatient's choice should depend instead on the success or futility of the treatment's application'.

103 Stem op cit at 261.104 SA Act, ss 7(l)(a) and (b).105 Compare the South Australian Guardianship and Administration Act 1993, s 3, which defines 'mental incapacity'

as, 'the inability of a person to look after his or her own health, safety or welfare or to manage his or her ownaffairs, as a result of (a) any damage to, or any illness, disorder, imperfect or delayed development, impairmentor deterioration, of the brain or mind; or (b) any physical illness or condition that renders the person unable tocompetence his or her intentions or wishes in any manner whatsoever' .

106 Stem op cit at 261-262.107 For example, s 44(1) of the Tasmanian Guardianship and Administration Act 1995 provides that applications may

be made to the Board for consent to medical treatment. Subsection 3 of s 44 stipulates that the Board may issueand make available to members of the public guidelines specifying situations in which applications undersubsection 1 should be made to the Board for its consent to medical or dental treatment. Under this provisionand a similar provision existing in NSW, the guidelines could indicate that issues of competence could bedetermined by the Board.


refusal directive or certificate irrespective of competence or incompetence or the nature ofthe patient's illness.

IX. Type of treatment

The legislation in all four jurisdictions prescribes that a person of sound mind can refusel08

medical treatment(1) generally; or(2) of a particular kind.

Although the definitions of medical treatment varyl09 it is clear the intention of thelegislation is to provide as wide a choice as possible to persons to assent to or refusemedical treatment. However, the nature of the South Australian and Northern Territorylegislation limits the type of treatment, to treatment relevant to the 'terminal phase of aterminal illness or persistent vegetative state' .1IO The Victorian and Australian CapitalTerritory legislation, not being restricted in this way, is clearly wider in its scope. A personmay refuse any medical treatment for a current medical condition. 111 An example of ageneral refusal of treatment would be as follows:

If I have a physical illness from which there is no likelihood or recovery and it is soserious that my life is nearing an end(1) I wish to be kept alive for as long as possible using whatever forms of medical

treatment are available; orl12

(2) I do not wish to be kept alive by medical treatment. I wish medical treatment to belimited to keeping me comfortable and free from pain.

As has been noted the more general the directive, the more likely there will bedisagreement about its intended scope and whether the decision was sufficiently informedgiven the possibly changed circumstances. On the other hand, the attempt to specify inadvance which particular kinds of treatment are to be withdrawn or withheld, or moregenerally to which consent is refused, can also cause problems. Provided that the specificsituation contemplated arises, there is no legal problem; the advance directive is bindingon the doctor as in Malette v Shulman. If a different situation arises, however, the 'livingwill' may miss the mark and the patient's more general intention to, for example, foregolife-sustaining treatment, will be frustrated. l13 This problem does not arise to the samedegree in Victoria and the Australian Capital Territory because the anticipatory nature ofany decision is extremely limited. Any general or specific refusal of treatment can onlyrelate to a current medical condition. As the patient is aware of the condition he or shecan be informed about the types of treatment (or alternative treatments) that are availableand the consequences of those forms of treatment before making a decision to refusetreatment. This is one of the very few advantages of the Victorian and Australian CapitalTerritory models.

The legislation in Victoria and the Australian Capital Territory provides one important

108 The SA Act, in s 7(1), also allows the person to consent to medical treatment.109 In the Victorian Medical Treatment Act 1988, 'medical treatment' means 'the carrying out of (a) an operation or

(b) the administration of a drug or other like substance or (c) any other medical procedure but does not includepalliative care'. The Australian Capital Territory legislation is similar but palliative care is not excluded. In SouthAustralia the words means 'treatment or procedures administered or carried out by a medical practitioner in thecourse of medical or surgical practice or by a dentist in the course of dental practice and includes the prescriptionor supply of drugs'. (s 4)

110 SA Act, s 7(1), NT Act, s 4(1).III In both jurisdictions, however, palliative care is excluded. See: Vic Act, s 3, ACT Act, s 5(2) and s 23 and

discussed detail below.112 This fonn of directive being an assent to treatment is possible in South Australia but not in the other jurisdictions.113 A Grubb op cit at 87.

John Blackwood 287

exception to the right of a patient to refuse treatment namely, a patient cannot refusepalliative care. I14 In Victoria the definition of medical treatment excludes palliative care, I 15

while in the Australian Capital Territory s 5(2) provides: 'This Act does not apply topalliative care ... '. In this respect the legislation in both jurisdictions differs from thecommon law. As noted in the introduction to this article, recent decisions in England, I 16

Canada117 and New Zealand118 have upheld the principle of self-determination andconfirmed the absolute right of a capable adult patient to refuse medical treatment forreasons which are rational, irrational, unknown or non-existent and it has been argued thatthe common law right to make anticipatory decisions is just as broad. I 19 None of the recentcommon law authorities have suggested that the right to refuse treatment is subject tolimitations.12o Although the matter has not arisen directly the common law seems clearthat a capable adult patient can refuse any type of medical treatment including palliativecare.

However, the position in Victoria and the Australian Capital Territory may not be asdifferent as it at first appears. In both jurisdictions, the relevant legislation is subject to theproviso that a person's right to refuse medical treatment 'under any other law' isunaffected. 121 As the 'common law' is clearly 'any other law' for the purposes of thelegislation, a patient in Victoria or the Australian Capital Territory could refuse palliativecare despite the clear legislative prohibition.122

The South Australian legislation, in contrast to that in Victoria and the AustralianCapital Territory, implicitly recognises the common law right to refuse palliative care. Thedefinition of medical treatment does not exclude palliative care, nor is it provided elsewherein the legislation that refusal of such treatment is unauthorised. By contrast, however, thelegislation prohibits an agent appointed under a medical power of attorney from refusing:(1) the natural provision or natural administration of food and water; or

114 In both Acts 'palliative care' is defined to include (a) the provision of reasonable medical procedures for the reliefof pain, suffering and discomfort, or (b) the reasonable provision of food and water. See: Vic Act and ACT Act,s 3.

115 Vic Act, s 3. The amendment to the definition of 'medical treatment' in the original Medical Treatment Bill 1987to exclude palliative care apparently came about in response to concern from representatives of the Catholicchurch. It is certainly not recommended in the major report that proceeded the Victorian legislation.

116 Airedale NHS Trust v Bland, Re T (adult: refusal of medical treatment) op cit; Fenchay NHS Trust v S [1994] 1WLR 601.

117 Nancy B Hotel-Dieu de Quebec (1992) 86 DLR 4th 385; Rodriguez v British Columbia (Attorney General) (1993)82 BCLR (2d) 27.

118 Auckland Area and Health Board v A-G [1993] 1 NZLR 235.119 The following statement of Lord Keith in Bland op cit at 857, summarises the common law position succinctly:

'a person (who is conscious and of sound mind) is completely at liberty to decline to undergo treatment, even ifthe result of his doing so will be that he will die. This extends to the situation where the person, in anticipationof his, through one cause or another, entering into a condition such as PVS, gives clear instructions that in suchevent he is not to be given medical care, including artificial feeding, designed to keep him alive'.

120 The only exception was previously thought to have been the situati~n where the patient's refusal might lead tothe death of a viable foetus. See the remarks of Lord Donaldson in Re Top cit at 652. However, a recent Courtof Appeal decision in Re MB, unreported, case no FAMF97/0246F, 18 February 1997 at 45-46, has decided thatthere is no such exception in English law. The Court said: '. . . a competent woman who has the capacity todecide may ... chose not to have medical intervention, even though, the consequence may be the death or serioushandicap of the child she bears or her own death . . . The foetus up to the moment of birth does not have anyseparate interests capable of being taken into account when a court has to consider an application for a declarationin respect of a caesarian section'.

121 Vic Act, s 4(1); ACT Act, s 5(1).122 It may be arguable however that the Victorian legislation in fact overrides the common law. Section 3 of the

Medical Treatment Act prescribes that 'In this Act - "medical treatment" means the carrying out of (definitionfollows) but does not include palliative care'. Section 4(1) of the same Act reads 'This Act does not affect anyright of a person under any other law to refuse medical treatment'. Now if the words 'medical treatment' in s 4have the same meaning as they do in s 3 the provision of palliative care must be excluded. Thus the commonlaw right to refuse palliative care is effectively overridden by the narrow definition of medical treatment in s 3of the Victorian Act.


(2) the administration of drugs to relieve pain or distress. 123

The South Australian Committee justified its reasons for excluding the right of an agentto refuse palliative care but confIrming that right to a competent adult as follows:

Whilst the right to refuse treatment should be able to be delegated to a medical agent, theCommittee does not believe the agent's power to act on behalf of the patient should extend torefusal of normal palliative care.

Palliative care is the provision of pain relief and control of symptoms such as nausea, vomiting,constipation, breathlessness and agitation or mental distress. It includes comfort-orientated nursingcare which recognises the emotional and spiritual needs of the patient.

Water and nourishment are made available in response to the patient's wishes.Whilst a patient may refuse such care for any reason, including a desire to hasten death, such

refusal (especially if sustained to the point of dehydration and/or starvation) requires a level ofself-determination which the Committee believes can only be exercised by individuals actingconsciously, in all the circumstances, on their own behalf. 124

Whether legislation regulating advance directives should prohibit a competent patientfrom refusing palliative care is a vexed question on which opinion is very much divided.Andrew Grubb has argued that:

. . . a doctor cannot be required to refrain from treating a patient so that, in effect the patient isabandoned. A patient probably, therefore, could not validly refuse basic care in the fonn of whatis often tenned 'nursing care'. Public policy would prohibit a patient from refusing suchtreatment. 125

The Law Commission agreed saying:126

. . . we consider that the acceptability of basic care and pain relief should be judged according tothe patient's current needs and wishes (if his wishes can be discerned) without reference to hisprior instructions. We would not expect many people to wish to make a directive refusing basiccare or pain relief and we do not regard this as a significant infringement of the patient's rightsof self detennination. 127

Others disagree.128 They argue that often feeding and hydration is not necessarily basicnursing care, that sometimes it merely prolongs the dying process and that doctors shouldbe permitted to withhold or withdraw it in these cases. Further, it is contended that artificialnutrition129 and hydration cannot be distinguished from other forms of medical treatmentand it should be withheld or withdrawn on the basis of patient wishes rather than on thetype of treatment or patient prognosis. 130 It can be argued that the relevant Australian

123 SA Act, s 8(7).124 Op cit, pp 5, 6.125 A Grubb op cit at 85. To the same effect see the comment by I Kennedy and A Grubb, op cit, p 1277 where,

however, the concept of basic care or 'nursing care' is now very narrowly defined and restricted to 'washing andchanging and otherwise supervising the patient's general hygiene'.

126 The Law Commission, op cit, p 40.127 As Gelfand notes, op cit at 750, the vast majority of 'living will' statutes in the United States specifically exempt

nutrition, hydration, comfort care and the alleviation of pain. He continues at 751: 'Many other statutes which donot discuss the point probably were not intended to differ in substance. Under such statutes, food, water, comfortcare and pain reduction techniques cannot be withdrawn. These restrictions produce a dilemma where thetechniques necessary to reduce pain or maintain nutrition and hydration also prolong the life (and misery) of thepatient' .

128 See Generally: American Medical Association, Withholding or Withdrawing Lifeprolonging Medical Treatment.Opinion of the AMA Council on Ethical and Judicial Affairs, 1986, as referred to in CJ Condie, 'Comparison ofthe Living Will Statues of the Fifty States' (1988) 14 J Contemp L 105 at 121; EM Joyce, 'To Die or Not toDie: The New York Legislature Ponders a Natural Death Act' (1985) 13 Fordham Urb U 639 at 649-650 and674, referring to In re Convoy; R Steinbrook and B Lo, 'Artificial Feeding - Solid Ground, not a Slippery Slope'(1988) 318 New England Journal of Medicine 286 at 288.

129 Defined as 'intravenous feeding or feeding through a nasogastric tube' see Gelfand op cit at 752.130 R Steinbrook and BLoop cit at 288.

John Blackwood 289

legislation in fact enables a person to refuse forced or artificial131 feeding or hydration.The Consent to Medical Treatment and Palliative Care Act (SA) 1995 provides that anagent can not refuse 'the natural provision or natural administration of food and water'132while the Victorian and Australian Capital Territory legislation133 talk of 'the reasonable'provision of food and water. Artificial hydration or nourishment may be unreasonable incircumstances which prolong the life (and misery) of the patient.

x. Prerequisites: a question of capacity

The Australian legislation requires that the person executing the directive be 'of soundmind and (have) attained the age of 18 years' .134 The concept of sound mind is an unusualone to use in a civil statute.135 Apart from the fact that from a medical point of view thephrase is meaningless,136 it is more appropriate in the criminal law context. In alljurisdictions 'every person is presumed to be of sound mind, and to have been of soundmind at any time which comes in question until the contrary is proved' .137 Known as the'presumption of sanity' it is rebuttable and casts the onus on the accused to prove, on thebalance of probabilities, that he or she was insane at the time of committing theincriminating act. 138 Thus 'soundness of mind' in law has to do with mental illness, insanityand detention at the Governor's pleasure. It has little if anything to do with incompetence.However, it is quite clear that what is relevant in the area of assent to, or refusal of,medical treatment is cognitive capacity or competence and in the context of advancedirective legislation the phrase of 'sound mind' should be construed accordingly.

But how is capacity or competence to be defined in the context of health care? Atcommon law a per~on has the capacity to consent, to medical treatment if the persqnunderstands in 'broad terms the nature and purpose of the proposed treatment'139 and it isnot necessary for the patient to be informed about and be able to understand the risks andconsequences associated with that treatment. 140 However, it is clear that this traditionalapproach has been modified in cases involving anticipatory refusal of medical treatmentparticularly where the refusal has life-threatening consequences. In Re T,141 a womaninjured in a car accident, refused a blood transfusion and the issue of her capacity to makethat refusal arose. Lord Donaldson recognised that 'every adult is presumed to havecapacity, but it is a presumption that can be rebutted' .142 This presumption should only be

131 Author's emphasis.132 SA Act, s 8(7)(b)(i).133 Vic Act, and ACT Act, s 3.134 Vic Act, s 5; ACT Act, s 6; SA Act, s 7(1) and NT Act, s 4(1) to the same effect but with slightly different

wording.135 But as Gelfand op cit at 755 note 70 notes, the majority of living will statutes to 1987 used the term 'of sound

mind'.136 D Mendelson op cit at 117 comments: 'from a medical point of view, the expression "of sound mind" is

meaningless. The DSM-III-R [Diagnostic and Statistical Manual o( Mental Disorders (3rd ed) 1987] does notrefer to it nor is the phrase used in any modem psychiatric text book or manual' .

137 Tasmanian ~riminal Code 1924, s 15. For the common law in McNagthen (1843) 10 CL & Fin 200; (1843-60)All ER 229, where Lord Tindal CJ said at 209: 'the jurors ought to be told in all cases that every man is topresumed to be sane, and to possess a sufficient degree of reason to be responsible for his crimes until the contrarybe proven'.

138 See generally: P Gillies, Criminal Law (3rd ed), LBC, Sydney, 1993, para 17-219; Howards, Criminal Law (5thed), LBC, North Ryde, NSW, 1990, para 447-450.

139 Rogers v Whitaker (1992) 175 CLR 479 at 490; Chatterton v Gerson [1981] 1 QB 432 at 443. And generally:M Brazier, Medicine, Patients and the Law (2nd 00), Penguin, London, 1992; and the Law Commission Report(No 129), para 14.22.

140 Rogers v Whitaker op cit at 52. Also R v Mental Health Act Commission, et p W, The Times, 27 May 1988a patient need not 'understand the precise physiological process involved before he can be said to be capable ofunderstanding the nature and likely effects of the treatment'.

141 Op cit.142 Ibid at 661.


rebutted if it is clear that the patient's reasoning powers are so 'seriously reduced'143 thatthe doctor is reasonably entitled to form the view that the patient does not understand.However, according to Lord Donaldson the test of capacity is not simply an understandingin broad terms of the nature and effect of the treatment but in addition there is arequirement to take into account the seriousness of the treatment decision. Did the patienthave 'a capacity which was commensurate with the gravity of the decision which hepurported to make? The more serious the decision, the greater the capacity required' .144Despite Lord Donaldson's remarks that the patient's choice must be respected even if thereasons for making it are 'rational, irrational, unknown or even non-existent',145 there is adanger that by equating seriousness with capacity it will be easier for the presumption tobe rebutted and the patient's wishes to be ignored.

A more significant variation to the traditional test of capacity occurred in Re C. I46 Thedecision confmned that the test of'capacity is more than the minimum 'to understand inbroad terms' but also that cognitive ability not mental illness was the true test in thesecases. The patient suffered from schizophrenia. He developed gangrene in his foot. Thedoctors considered that unless C had his foot amputated below the knee there was an 85%chance he would die. C refused the treatment saying he would rather 'die with two feetthan live with one' .147 C agreed to less drastic measures and in less than a month the 85%chance of death had been averted. C subsequently applied for an injunction to prevent theamputation of his foot either at present or in the future without his written consent. Theinjunction was granted. At issue was C's capacity to refuse treatment. It was commonground that C's capacity was reduced by his mental illness148 but the issue was whetherit was so sufficiently reduced so as to make his anticipatory refusal invalid? That, saidThorpe J, depended on the legal definition of capacity:

Mr Gordon149 argues for what he calls the minimal competence test, which he defines as thecapacity to understand in broad terms the nature and effect of the proposed treatment. ... [T]hatthe capacity to refuse treatment is no higher than the capacity to contract. I reject that submission.I think that the question to be decided is whether it has been established that C's capacity is soreduced by his chronic mental illness that he does not sufficiently understand the nature, purposeand effects of the proffered amputation. ISO

According to Thorpe J there were three ingredients involved in answering the questionwhether C understood the nature purpose and effects of the proposed treatment - anability (i) to take in and retain treatment information; (ii) to believe it; and (iii) to weighthat information, balancing risks and needs. IS I Applying these tests Thorpe J concluded:

I am completely satisfied that the presumption that C has the right of self-determination has notbeen displaced. Although his general capacity is impaired by schizophrenia, it has not beenestablished that he does not sufficiently understand the nature, purpose and effects of the treatmenthe refuses. Indeed, I am satisfied that he has understood and retained the relevant treatmentinformation, that in his own way he believed it, and that in the same fashion he has arrived at aclear choice.

I accept Mr Jackson's submission that C might have the capacity to make a present refusal butlack the capacity to make an anticipatory refusal, but I reject that conclusion because in weighing

143 Ibid, per Lord Straughton at 669.144 Ibid at 661. Author's emphasis.145 Ibid at 653.146 In re C (Adult: Refusal of Treatment) [1994] 1 WLR 290.147 Ibid at 291.148 ThorPe J commented on the effect of C's illness as follows at 294: 'He was not always easy to understand and

the grandiose delusions were manifest, but there was no sign of inappropriate emotional expression. His rejectionof amputation seemed to result from sincerely held conviction. He had a certain dignity of manner that I respect' .

149 Richard Gordon with Craig Barlow appeared as counsel for the patient C.150 Ibid at 295.151 Ibid at 292. See also the Law Commission Report (No 129), para 2.20 to the same effect.

John Blackwood 297

the consequences of facing a future acute phase without amputation he has the experience of arecent acute attack to guide him. 152

Recent legislation in Canada has confirmed the common law test of competence. Thefollowing definition was recently adopted in Manitoba: 153

A person has capacity to make health care decisions154 if he or she is able to understand theinformation that is relevant to making a decision and able to appreciate the reasonably andforeseeable consequences of a decision or lack of decision.

The failure of the advance direction legislation in Australia to define 'sound mind' orotherwise provide for a statutory test of competence will not be cause for concern in themajority of cases. The common law recognises a presumption of capacity. It is a strongpresumption. Difficulties and questions about whether the patient had the capacity toexecute an advance directive - given the signing and witnessing requirements - mustbe rare. To suggest as Mendelson155 does that the Australian legislation156 is seriouslydeficient because it does not provide for an independent psychiatric assessmentl57 of therefuser's competence seems overly paternalistic and unnecessary bureaucratic. She arguesthat such tests are needed because under the Victorian legislation an assessment of aperson's clinical competence can only be undertaken before the creation of the refusal oftreatment certificate, and that a doctor who subsequently considered that a person's choiceto refuse treatment may not have been a true or free choice will have no alternative butto comply with the directive. 158 Apart from the fact that 'an independent psychiatricassessment' will not prevent or uncover any undue influence, it is submitted that theproposed solution simply does not justify the means. To require an independent psychiatricassessment of competence in every cas~ where a patient executes an advanced directiveor'signs a refusal certificate seems an overly harsh requirement.159 Instead of 'independentpsychiatric assessment' or legislative tests of competency a much simpler way ofaddressing the issue is to adopt the approach followed in Manitoba and that is to legislatefor the presumption of capacity. Section 4(2) of the Health Care Directive Act (Manitoba)1992 provides:

In the absence of evidence to the contrary, it shall be presumed for the purpose of this Act,

(1) that a person who is 16 years -of age or more has the capacity to make health care decisions;and

(2) that a person who is under 16 years of age does not have the capacity to make health caredecisions.

In the event of a dispute about competence the onus of proof falls upon the personasserting lack of capacity.

152 Ibid at 295.153 Health Care Directive Act 1992, s 2. The Law Reform Commission recommended an almost identical test be

adopted in England, see para 2.12-2.13.154 Ibid. Defined in s 1 as: 'a consent, refusal to consent or withdrawal Qf consent to treatment'. Treatment is defined

in the same section as: 'anything' that is done for a therapeutic, preventative, palliative, diagnostic, cosmetic orother health related purpose and includes a course of treatment'.

155 Op cit at 129.156 Specifically the Victorian Medical Treatment Act 1988, but the Australian Capital Territory and South Australian

legislation is similar in this context.157 Competency tests have been developed. See J Janofksy, R McCarthy and M Folstein, 'The Hopkins Competency

Assessment Test: A Brief Method For Evaluating Patient's Capacity to Give Informed Consent' (1992) 43 (2)Hospital and Community Psychiatry 132, and R Smith, 'Evaluating the Donor's Competence to Sign an EnduringPower of Attorney' (1996) 4 Journal of Law and Medicine 82.

158 Mendelson op cit at 130.159 Even those who strongly advocate for a legislative test of competence to sign an Enduring Power of Attorney do

not suggest that a 'separate psychiatric assessment' should be undertaken to determine competence. At most,uniform legislative guidelines to enable practitioners and others to determine competence are all that is needed.See R Smith, 'Evaluating the Donor's Competence to Sign an Enduring Power of Attorney' (1996) 4 Journal ofLaw and Medicine 82 and R Creyke, op cit at 92-96.

292

XI. Document formalities

'I would rather die with two feet than live with one'

As can be seen from the table, the other statutory requirements are relatively uniformacross the jurisdictions. Usually the advance directive must be in writing. 1OO Oral directivesrefusing treatment and revoking previous declarations are permitted in some jurisdictions161

but not in others.162 However there may not be much practical difference in the twopositions as this incisive comment from the Manitoba Law Reform Commission shows:

It is important to remember that there is a difference between a health care directive and an oralconsent or refusal of consent given while competent. Consider this scenario. A person makes ahealth care directive stating that under no circumstances does she wish to undergo amputation.Some time later, she requires surgery. Moments before the surgery is to begin, she calls thesurgeon over and states that, if it becomes necessary, she is prepared to undergo amputation. Sucha statement is not a revocation of the health care directive. However, assuming the patient iscompetent, that statement is a valid consent to treatment which is recognised by the commonlaw. 163

The advance directive must also be witnessedl64 and in a prescribed form165 or inaccordance with a form in a schedule. l66 Some argue167 that a prescribed form is -desirablesince patients might otherwise find it difficult to express their own views unambiguously,or might make requests which were medically unsound or legally untenable. Similarly ithas also been suggested that doctors might find it difficult to adopt a workable practice ifthey kept encountering a range of different documents. 168

However, the major problem with insisting on a prescribed form is the risk that atechnical defect in the drafting of the directive may result in it being held to be invalidfor non-compliance. 169 On the other hand, if a prescribed form is not mandated, differentforms of advance directiv~ can be developed_to cater for the concerns of different patients.The Manitoba Law Reform Commission recommended that individuals should be able touse any form and any words which clearly express their wishes for future medical

160 The SA Act does not expressly say that the 'anticipatory direction' has to be in writing but as a prescribed fonnor a 'fonn prescribed by regulation' is mandatory it is clearly implied [s 7(2)(a)]. However, the Act is silent asto whether a revocation of a direction needs to be in writing. Clearly revocations are possible - s 7(3)(b) refersto a person having 'revoked or intended to revoke a direction' - but there are no statutory requirements as toform. However, there is a strong presumption that an oral revocation would suffice because s 8(9) permits themaker of a medical power of attorney to revoke the power 'by any fonn of representation that indicates anintention to withdraw or tenninate the power'. If you can dismiss your medical attorney orally you can surelyrevoke a directive in the same way.

161 The Vic Act, ss 5(3) and 7(2) and the ACT Act, ss 6 and 9 allow for a patient's refusal of medical treatmentand the revocation of that refusal to be indicated in 'writing, orally or in any other way in which the person cancommunicate'. The Law Commission (No 129) proposed 'that it should be possible to revoke orally at any timewhen the maker has the capacity to do so'. See also Alberta Law Refonn Commission, Report for Discussion,No 11, p 55.

162 The Manitoba Law Reform Commission (No 74) rejected oral declarations and revocations commenting at p 16:'Because of the inherent lack of reliability associated with one person recalling another person's oral statements,oral health care directives should not be allowed under our scheme. In order to reduce problems of proof andfraud while still maintaining simplicity, we would only require that health care directives be in writing and signedby their makers'. See also Newfoundland Law Reform Commission (WP6), p 80 and the Queensland Law ReformCommission (No 49), pp 327-329. The latter report rejected oral declarations and revocations despite very forcefulsubmissions to the contrary claiming 'the method of revocation should not create problems of proof and consequentuncertainty nor the opportunity, for well-intentioned but unwanted intervention'. One could comment here thatthe fact that a revocation or refusal is in writing will not in any way diminish the possibility of undue influencesee Re T op cit.

163 Manitoba Law Refonn Commission Report (No 74), op cit.164 See Table above.165 NT Act, s 18(1).166 SA Act, s 7(l)(b); Vic Act, s 5(2); ACT Act, s 7(a).167 The Living Will, 1988, op cit, P 54.168 C Schlyter, op cit, p 70.169 Queensland Law Refonn Commission (No 49), p 355.

John Blackwood 293

treatment.170 This is reflected in the Manitoba legislation which states that if a form isprescribed by regulation the 'use of such a form is not mandatory' .171 A similar conclusionwas reached by the Alberta Law Reform Commission:

To include a recommended form in the legislation might well give the misleading impression thatit is the only form (or the preferred form) of healthcare directive, and thus might be adoptedregardless of the particular individual's needs and circumstances. A healthcare directive shouldbe tailored to fit the wishes and needs of the individual, and we would not wish the legislationto imply that there is a 'boilerplate' version which can be used in all cases. Moreover, to theextent that it may be useful to develop some standard forms of healthcare directive, we wouldanticipate that various organisations will undertake this, and indeed we are aware of severalhealthcare facilities which are already in the process of doing SO.172

The recent trend is certainly away from prescribed forms and towards the developmentof models either in general form or to suit the concerns of different patients. 173 TheAustralian legislation in the area of advance directives is currently so narrowly definedthat the requirement of a prescribed form is unlikely to lead to the wishes of the patientbeing ignored due to a technical defect on the inability of the patient to express himselfor herself clearly. However, if legislation were developed in this country to broaden thescope of advance directives, particularly if such legislation included provision for theappointment of a proxy decision-maker in the event of subsequent incapacity, then 'tailormade' rather than 'boilerplate' forms would be greatly preferred.

XII. The way ahead

This article has argued that the concept of an advance directive is one that should berecognised both legally and as a matter of clinical practice.174 The issue is not reallywhether you or I or anybody else should or should not execute a directive in advance, butrather that the law and the medical profession should respect our specific right to decidethat we want treatment or we do not want treatment either now or at some time in thefuture. If that proposition is accepted the issue then becomes what is the best way ofachieving the objective. Current legislation in Australia, because of its limited scope,narrow definition and paternalistic attitude is ineffective175 and inadequate. In most casesthe legislation is also superfluous in that, properly considered, the common law in alljurisdictions already recognises and will enforce the right of a competent person to requestand/or refuse treatment.

Nevertheless, it can be forcefully argued that the way ahead should involvelegislation - not simply to validate an advance directive - but to provide a better wayto promote self-determination and patient autonomy. As we have seen,176 the majorlimitation of an advance directive is that because of changed circumstances - for example,misunderstandings, misapprehensions, or misdiagnosis - or lack of clarity, the person'swishes as .to future treatment may be ignored. As noted earlier, a way to overcome this

170 Manitoba Law Reform Commission (No 74), p 15.171 Health Care Directives Act 1992, s 11.172 Alberta Law Reform Commission (No 64), p 17.173 See: The Terrence Higgins Trust and the Centre of Medical Law and Ethics advance directive form which was

developed for people with HIV and AIDS after extensive consultation with people concerned service organisationsand doctors involved in the area. The form is set out in Kennedy & Grubb, op cit, pp 1365-1368.

174 This proposition is true whether the advance directive is authorised by statute or recognised by the common law.See In re C op cit.

175 For example, s 5E( 1) of the Victorian Medical Treatment Act 1988 requires that a central register be kept of allrefusal of treatment certificates. As Smith reports in Enduring Powers of Attorney: Getting the Balance Right,unpublished paper presented to the 3rd National Guardianship and Administration Conference, Western Australia,October 1994 at 13, between 6 August 1990 and 30 June 1993, only twenty nine refusal of treatment certificateshad been registered. As at September 1996 the number was 31.

176 See text accompanying footnotes 34-41 above.


problem is to introduce legislation to enable a person (the maker) to appoint another (theproxy) to make health care decisions for her or him in the event of subsequentincapacity. 177

The primary purpose of such an appointment is to enable the proxy - usually a closefriend or relative - to make a wide range of decisions including health care decisions foranother. In addition, however, the legislation can provide that a person may giveinstructions or directions to her or his agent as to the type of treatment she or he wantsor does not want. 178 These directions would be binding both on the agent and the healthcare professional. 179 Legislation that gives effect to advance directives and enduringguardianship is a powerful proponent of self-determination and patient rights.

The Manitoba Law Reform Commission argued strongly for legislation to give effect -simultaneously - to both type of directives: 180

Although individuals should be free, if they so wish, to use health care directives for the solepurpose of setting out future treatment wishes or for the sole purpose of naming a health careproxy, health care directives should be capable of accomplishing both tasks. A requirement touse two separate documents to effect the two purposes would ignore their close relationship andwould create an unnecessarily complex mechanism that might frustrate the intentions of unwarymakers. 181

Legislation in force in South Australia,182 Tasmanial83 and the Australian CapitalTerritoryl84 expressly allows the maker of an Enduring Power of Attorney to indicate whatmedical treatment is acceptable and what is not in the event of subsequent incapacity. 185

In South Australia,186 for example, the Guardian and Administration Act 1993 provides,inter alia, that:

* persons over 18 may, by instrument in writing, appoint an enduring guardian; and

* subject to the conditions (if any) stated in the instrument, consent or refuse to consentto medical treatment. 187

177 In Australia commonly called an 'Enduring Power of Attorney' (EPA) in the United States a 'Durable Power ofAttorney' and in Canada the phrase 'Health Care Directive' inCOrPOrates both treatment choices and appointmentof a proxy. A detailed analysis and explanation of the terms is in footnote 11 above.

178 For example, the Manitoba Health Care Directives Act 1992 provides in s 5 that 'a directive may express themaker's health care decisions or may appoint a proxy to make health care decisions on the maker's behalf orboth' and in s 13 provides that 'if a directive appointing the proxy expresses the makers health care decisionsthose decisions must be complied with subject to principle 13'. Author's emphasis.

179 Ibid, ss 13(1) and 3.180 'Self-Determination in Health Care' (1992) 12 Estates and Trusts Joumal49 at 55.181 'Suppose we insisted that future treatment wishes must be expressed in an "advance directive" and that the

appointment of proxies must be contained in a "durable power of attorney for health care". What happens if anindividual uses the form prescribed for an "advance directive", but actually attempts to name a proxy? Thechances of a finding of invalidity would be increased further if different execution requirements applied to thetwo documents'. (Footnote 4 of the original report).

182 Guardianship and Administration Act 1993, Part 3 and the schedule. See also the Consent to Medical Treatmentand Palliative Care Act 1995, which in Division 3 provides for the appointment of a medical agent with thepower to consent to and refuse medical treatment subject to 'any conditions and directions' contained in thepower of attorney [s 8(7)(a)] and to any 'anticipatory directions' [s 8(8)(b)]. Just why there are two statuteseffectively dealing with the same subject is not clear.

183 Guardianship and Administration Act 1995, Part 5 and Schedule 3.184 Powers of Attorney Act 1956. Section 13(1) provides, inter alia, that the donor (the maker) of an enduring power

of attorney may confer on the donee (the agent), subject to the instrument, the power to consent to medicaltreatment. The Medical Treatment Act 1994 also provides for the appointment of an agent (called the grantee)but only gives the agent the power to consent to the 'withholding or withdrawal of medical treatment' [sI3(1)].

185 In Victoria the Medical Treatment Act 1988 is unduly narrow in that while it provides for the appointment of amedical agent, the agent can only refuse treatment for a current condition and not assent to or request treatment.It is clearly not possible for the person appointing the agent to issue advance instructions.

186 The legislation in Tasmania is identical: op cit, Part 5 and Schedule 3.187 Guardianship and Administration Act 1993, s 25. To similar effect, Guardianship and Administration Act 1995

(Tas), s 32(6) and Powers of Attorney Act 1956, s 13(l)(b).

John Blackwood 295

In addition the form in the schedule includes the following:

'I require my guardian to observe the following conditions in exercising, or in relation to theexercise of, the powers conferred by this instrument'188

Examples of 'conditions' in the health care context might be:* Because of my religious beliefs, I do not wish to receive a blood transfusion, even if

it is judged medically necessary to save my life; or* I do not give my guardian permission to consent to lifesaving medical intervention

when the expected outcome is poor.189

The Enduring Power of Attorney legislation in force in these three States is to berecommended. It removes uncertainty and ambiguity while retaining a marked degree offlexibility. It is modem in approach and it is hoped that similar legislation will be enactedin other jurisdictions in the near future. 190

XIII. Conclusion

It has been strongly argued in this article that legislation to recognise the legal effect ofan advance directive is unnecessary. Recent decisions in Canada and England191 haveshown beyond doubt that when an informed and competent patient makes an advancedecision to consent to or refuse treatment, that decision will be binding.192 There is noreason to suspect that a similar decision would not be reached in Australia. However,recognition, either by the courts or the legislature, of the validity of an advance directivewill not ensure that its terms will be acted upon and the patient's wishes observed. Anumber of studies have shown that despite apparently clear and unambiguous directivesdoctors either misunderstood or ignored their patients' wishes. 193 In America, a 1995studyl94 financed by the Robert Wood Johnson Foundation195 conducted over two years

188 Ibid, Schedule s 3.189 Both examples contained in a 'Do it yourself kit' for Enduring Power of Guardianship, published by the Office

of the Public Advocate SA, May 1996. Copies available from Information SA.190 The Queensland Law Reform Commission (No 49) has recommended similar legislation to enable both the

appointment of an agent under an EPA and a person (chosen decision-maker) to make decisions about healthcare where the maker's instructions are unclear or inadequate. It is not at all clear from the report why there isa need for two types of EPA's. A properly expressed EPA can achieve the aims of giving effect to the patient'swishes and making decisions in all areas of the patient's lifestyle, including health care decisions. See, now, thePowers of Attorney Bill 1997, which gives effect to the recommendations of the commission in relation to EPAsand Advance Health Care Directives. New South Wales and Western Australia are also considering legislation tocreate EPAs for health care. See in Western Australia the discussion paper entitled, Proposed Changes to theGuardianship and Administrative Act 1990, prepared by the Office of the Public Advocate, September 1996,paras 2.6-2.8, and in New South Wales, the Guardianship Amendment Bill 1997, Part 2 ss 5-6N.

191 Airedale NBS Trust v Bland [1993] AC 789; Re T (adult: refusal of medical treatment) [1992] 4 All ER 649;Malette v Shulman (1990) 67 DLR (4th) 321; Flemming v Reid (199J) 82 DLR (4th) 298.

192 The House of Lords Select Committee were so convinced of the strength of the decisions that it recommendedagainst legislating for advance directives. See text set out at footnote 74 above.

193 D Hughes and P Singer, 'Family physicians' attitudes towards advance directives' (1992) 146 (11) CanadianMedical Association Journal 1937, surveyed 1000 physicians in Ontario and reported that 80% of respondentshad never used an advance directive in managing a patient and of those who had over half had not followed theinstructions contained in the directive! They concluded: 'Family physicians favour advance directives but usethem infrequently. Most physicians support offering them to terminally or chronically ill patients but not to allpatients at the time of admission to hospital. Although governments emphasise legislation, most physicians believethat public and professional education programs would be at least as likely as legislation to encourage them tooffer advance directives to their patients'. Similarly, J Downie op cit reported at 73 that in a similar survey of2000 Ontario physicians: '64% indicated they would respect a patient's wishes as expressed in a living will [notethat this suggests that 36% would not respect a patient's wishes]'.

194 W Knaus, 'Controlled Trial To Improve Care For Seriously III Hospitalised Patients' (1995) 274 Jounw,l of theAmerican Medical Association 1591.

195 The total cost for the study was in excess of 28 million US dollars.

296 'I would rather die with two feet than live With one'

at five major medical centres and involving 9105 patients l96 with one or more of nine lifethreatening diagnoses found, that the physicians involved misunderstood patients'preferences regarding cardiopulmonary resuscitation (CPR) in 80% of cases and whenpatients wanted CPR withheld, a do-not-resuscitate (DNR) order was never written l97 in40% of cases!l98 Dr William Knaus, the study's Co-ordinator, commenting on these andother findings in the Report said,

People think advance directives are solving the problem. We have very good i~formation thatthey aren't, that nothing has changed ... physicians are not trained to have conversations aboutdying with these patients. Doctors feel uncomfortable doing it so they avoid it. l99

There seems to be little doubt that advance directives are generally favoured by thepublic and by physicians. It has been estimated that 10% of Americans have signedadvance directives200 and one organisation alone in the United States has distributedbetween 15 and 20 million advance directives.2ol In Canada a similar organisation estimatesthat 365 000 living wills had been distributed despite the fact that at the time no CanadianProvince had enacted legislation giving legal effect to advance directives.202 Variousstudies have also shown that advance directives generally have the approval of health careprofessionals. One survey in the USA found 89.7% endorsed the legal recognition of livingwills,203 while a similar survey in Canada of 1000 Ontario family physicians found that86% favoured the use of advance directives.204 The British Medical Association has, since1992, strongly supported the use of advance directives - both living wills and EPA's -as a method of expanding patient choice beyond the onset of mental incapacity.205 A

South Australian survey of 462 adults in 1991 showed that 60% of those surveyed wouldconsider making a living will although nearly 55% did not know whether they were legalin that State.206

However, despite a broad social acceptance for advance directives in principle, thereappears to be little use for them in clinical practice. Despite the fact that the majority ofStates in America have legislated for advance directives and that 10% of the populationhave executed an advance care document, there is evidence that the documents are notcoming to the notice of physicians or hospitals.207 One of the few studies in Australia208

196 The first phase of the study was a two year prospective observational study with 4301 patients and the second atwo year controlled clinical trial involving 4804 patients. In the second study, half the group received traditionalhospital care while the others were monitored by specially trained nurses who consulted with patients and theirfamilies and kept the doctors infonned about their patients' condition and wishes. This extra care andcommunication did not make any difference. The results (see text above) remained the same for each patientgroup.

197 Author's emphasis198 The patients who did have their advance directive respected by the treating physician had to wait a long time for

the doctor's orders. Depending on their medical speciality, doctors took between 22 to 73 days to write the ordersafter the patient requested them, and 46% of the orders were written within two days of the patient's death.

199 New York Times, 22 November 1995, at Ai.200 J Stone op cit reports at 33 that: 'Jeffrey Harrison, a telephone counsellor for Choice in Dying, was kind enough

to infonn me that his organisation estimates that 10% of Americans have signed advance directives. Becausedurable power of attorney directives are more recent, most of these are probably living wills'.

201 Choice in Dying, fonnerly Concern for the Dying and Society for the Right to Die.202 Dying with Dignity referred to in J Downie op cit at 73.203 R Shapiro, F Tavill, G Rivkin and H Gruchow, 'The Living Will in Wisconsin' (1986) Wisconsin Medical Journal

at 17.204 D Hughes and P Singer op cit.205 British Medical Association pamphet revised in 1994 and called BMA Statement on Advance Directives, BMA

House, Tavistock Square, London.206 M Ashby and M Wakefield, 'Attitudes to some aspects of death and dying etc' (1993) 7 Palliative Medicine 273.207 L Emanuel and E Emanuel op cit at 3288-3289, citing A Caplan, 'Living Wills and the Lessons of Organ

Donations' (1985) 34 New Physician 19.208 M Ashby, M Wakefield and J Beilby, 'General Practitioners and Living Wills', August 1994, unpublished.

John Blackwood 297

to assess the attitudes and opinions of general practitioners209 to living wills found thatonly 63% of those surveyed were aware of the South Australian living will legislation andof those only 34% reported having forms available in their surgeries.210 These and similarresults211 caused the authors of the Report to conclude that:

Professional (and public) education about the Natural Death Act in South Australia has beeninadequate and that general practitioners tend to underestimate the willingness of many membersof the public to discuss death and dying and future incompetence.212

The most recent study in Australia213 on end of life decision-making confrrmed theearlier South Australian research that lack of knowledge about advance directives was amajor inhibiting factor to their general acceptance and use. The results showed that while64% of practitioners surveyed strongly agreed that advance directives would make a usefulcontribution214 to medical care, 93% thought their patients would be unlikely to make anadvance directive because they either did not know enough about them or did not knowhow to make one. Patient response was similar; 71% of the patients surveyed supportedadvance directives215 but again nearly 70% said lack of knowledge would prevent themexecuting the document.

Legal recognition of the validity of advance directives is the first step. Equally importantis public knowledge and education216 and an acceptance by the medical profession217 thatan advance directive is a valid expression of patient autonomy. Advance directives willonly be instrumental in achieving patient autonomy if they are user friendly,218 supportedby the public and ultimately respected by health care professionals219 charged with theresponsibility of administering medical treatment.

209 Ibid. 158 General Practitioners in South Australia were surveyed to assess their attitudes, opinions and experienceof the Natural Death Act 1983 and the 'living will' provisions.

210 Ibid at 2.211 D Hughes and P Singer op cit at 1937.212 M Ashby, et al op cit at 3.213 M Steinberg, et al, 'End-of-Life Decision-Making: Perspectives of General Practitioners and Patients', University

of Queensland, Department of Social and Preventative Medicine, July 1996. A major study covering a broadspectrum of end-of-life decision-making issues and involving 287 general practitioners and 581 patients.

214 Ibid at 27.215 Ibid at 85.216 Although in New South Wales, Tasmania and Western Australia there is no legislation giving effect to advance

directives, a document entitled 'Dying with Dignity: Interim Guidelines on Management' has been issued in allthree jurisdictions. Designed specifically to deal with 'dying with dignity' issues, the document is an importantstep in formally recognising a patient's right to refuse treatment. The possibility of executing an advance directiveis recognised as one way of ensuring patient autonomy in relation to "health care issues. The document consideresthat where an advance directive does contain a clear wish of a patient relevant to the current circumstances, thatwish should be respected.

217 In this respect it is interesting to note that in the recent Queensland study (Steinburg op cit) over 80% of thegeneral practitioners surveyed thought that it was important for patients to be able to indicate their treatmentpreferences for a future time. If this figure was subsequently translated into an acceptance by the treating physicianof that treatment choice the principle of self-determination would have been promoted in a very significant respect.

218 A number of groups and organisations are actively promoting living wills and other advance directives chiefamong them is Health Advocates Australia (http://www.ozemail.com.au/-healthad). which prepares tailor-madeadvance directives for clients.

219 As Michael Ashby op cit has noted at 3: 'If living wills, advance directives and substitute health care decisionmaking instruments are to be of practical use in the community, doctors and patients must know about them andbe comfortable with both the concepts and fonnats. It seems unlikely that they will achieve their objectives unlessgeneral practitioners are involved in their development and evaluation. Knowledge of their attitudes and viewson the subject is essential if they are to be adapted and utilised'.

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I would rather die with two feet than live with one'l