Advance directives, autonomy and the refusal of life sustaining medical treatment

However, the research also concludes that the commonlaw, as applied by the judiciary in some cases, may not be effective to promoteindividual autonomy, as there have been a number of cir

ADVANCE DIRECTIVES, AUTONOMY AND THE REFUSAL OF LIFE-SUSTAINING

MEDICAL TREATMENT

Lindy Willmott LLB (Hons 1) BCom (UQ) LLM (Cantab)

PhD Thesis by Published Papers

Health Law Research Program

School of Law Queensland University of Technology

2011

KE W ORDS

Advance directives - life-sustaining medical treatment - advance reusal o f lifesustaining medical treatment - withholding of treatment - withdrawal of treatmentliving will - contemporaneous reusal of medical treatment autonomy - right toself-determination - sanctity of life - medical ethics - validity of advance directives

statutory regulation of advance directives judicial approaches to autonomy advance care planning

-ABSTRACT

As Australian society 1s agemg, individuals are increasingly concerned aboutmanaging their uture, including making decisions about the medical treatment theymay wish to receive or reuse if they lose decision-making capacity To date, therehas been relatively little research into the extent to which legal regulation allowscompetent adults to make advance reusals of life-sustaining medical treatment thatwill bind health professionals and others when a decision needs to be made at auture time

This thesis aims to fill this gap in the research by presenting the results of researchinto the legal regulation of advance directives that reuse life-sustaining medicaltreatment In the ive papers that comprise this thesis, the law that gove s this area

is examined, and the ethical principle of autonomy is used to critically evaluate thatlaw

The principal finding of this research is that the current scheme of regulation isineffective to adequately promote the right of a competent adult to make bindingadvance directives about reusal of medical treatment The research concludes thatlegislation should be enacted to enable individuals to complete an advance directive,only imposing restrictions to the extent that this is necessary to promote individualautonomy

The thesis first examines the principle of autonomy upon which the common law(and some statutory law) is expressed to be based, to determine whether thatprinciple is an appropriate one to underpin regulation The finding o fthe research isthat autonomy can be justified as an organising principle on a number of grounds: it

is consistent with the values of a liberal democracy; over recent decades, it is aprinciple that has been even more prominent within the discipline o f medical ethicsand it is the principle which underpins the legal regulation of a related topic, namelythe contemporaneous reusal of medical treatment

1 Lindy Willmott, Ben White and Ben Mathews, 'Law, autonomy and advance directives' (2010) 18 Jounal of Law and Medicine 3 66 (reproduced in chapter 3).

Next, the thesis reviews the common law to determine whether it effectively achievesthe goal of promoting autonomy by allowing a competent adult to make an advancedirective reusing treatment that will operate if he or she later loses decision-makingcapacity This research finds that co on law doctrine, as espoused by thejudiciary, prioritises individual choice by recognising valid advance directives thatreuse treatment as binding However, the research also concludes that the commonlaw, as applied by the judiciary in some cases, may not be effective to promoteindividual autonomy, as there have been a number of circumstances where advancedirectives that reuse treatment have not been followed.

The thesis then examines the statutory regimes in Australia that regulate advancedirectives, with a focus on the regulation of advance reusals of life-sustainingmedical treatment This review commences with an examination o f parliamentarydebates to establish why legislation was thought to be necessary It then provides adetailed review of all of the statutory regimes, the extent to which the legislationregulates the form of advance directives, and the circumstances in which they can becompleted, will operate and can be ignored by medical professionals The researchinds that legislation was enacted mainly to clarify the common law and bring a level

of certainty to the ield Legislative regimes were thought to provide medicalprofessionals with the assurance that compliance with an advance directive thatreuses life-sustaining medical treatment will not expose them to legal sanction.However, the research also inds that the legislation places so many restrictions onwhen an advance directive reusing treatment can be made, or will operate, that theyhave not been successul in promoting individual autonomy

2 Lindy Willmott, ' Advance directives reusing treatment as an expression of autonomy: Do the courts practise what they preach? ' (2009) 38(4) Common Law World Review 295 (reproduced in chapter 4); and, to a more limited extent, Lindy Willmott, ' Advance directives to withhold life-sustaining medical treatment: Eroding autonomy through statutory reform' (2007) 1 0 Flinders Jounal of Law Reform

287 (reproduced in chapter 5); and Lindy Willmott, Ben White and Michelle Howard, 'Reusing advance refusals: Advance directives and life sustaining medical treatment' (2006) 30 Melbourne University Law Review 2 1 1 (reproduced in chapter 6).

3 Willmott, 'Advance directives to withhold life-sustaining medical treatment: Eroding autonomy through statutory reform ' , above n 2 ; Willmott, White and Howard, ' eusing advance reusals: Advance directives and life-sustaining medical treatment' , above n 2; and Lindy Willmott, 'Advance directives and the promotion of autonomy: A comparative Australian sta utory analysis' (20 1 0) 1 7 Journal of Law and Medicine 556 (reproduced in chapter 7).

Original and signiicant contributions to knowledge

The five papers compnsmg this thesis make seven original and significantcontributions to knowledge within t e discipline of law

1 The thesis comprehensively identifies and rev ews all of the publiclyavailable common law decisions in Australia and England that adjudicate onadvance directives th t reuse life-sustaining medical treatment Such areview has not before been undertaken

2 The cases that are identified are critiqued through close legal analysis of thereasoning used and principles applied

3 A theoretical evaluation is then undertaken by assessmg whether theapproach taken by the judiciary as examined through the legal critique 1sconsistent with the principle of autonomy

4 The thesis also reviews, for the first time, all of the parliamentary debates inAustralian jurisdictions where such debate preceded the enactment oflegislation

5 The thesis also examines all Australian legislation in detail, explaining howthe statutes regulate advance directives that reuse life-sustaining medicaltreatment

6 Features of a legislative ramework that are necessary to promote individualautonomy are suggested

7 The examination of the legislation (5 above) and the identification of features

of a legislative model that are needed to promote autonomy (6 above) providethe groundwork for the inal original and significant contribution: a critique

of the legislation using the benchmark of autonomy

3 Lindy Willmott, 'Advance drectives to withhold life-sustaining medicaltreatment : Eroding autonomy through statutory reform' (2007) 1 0 FlindersJournal ofLaw Reform 287 - 31 4

4 Lindy Willmott, Ben White and Michelle Howard, 'Reusing advancereusals: Advance directives and life-sustaining medical treatment' (2006) 30Melboune Universiy Law Review 2 1 1 - 243

5 Lindy Willmott, 'Advance directives and the promotion of autonomy: Acomparative Australian statutory analysis' (20 1 0) 1 7 Jounal of Law andMedicine 556 - 5 8 1

TABLE OF CONTENTS

Keywords i

Abstract .ii

List of Publications v

Statement of Original Authorship viii

Acknowledgements ix

PART INTRODUCTION AND LITERATURE REVIEW 1

Chapter 1 - Introduction . . 2

1 1 Description of the research problem, overall objectives and specific aims 2

1 2 Account of research proress: Linking the research papers . 9

1 3 Account of research proress: Linking the objectives, aims and research papers . .. 20

1 4 Scope of the thesis . . 26

1 5 Original and significant contributions to knowledge 3 0 Chapter 2 - Literature Review 3 3 2 1 Introduction . 3 3 2 2 Advance directives: background 34

2.3 Advance directives in a broader regulatory context: decision making for adults who cannot decide . . 40

2.4 Literature describing common law regulation of advance directives 46

2.5 Literature describing statutory regulation 52

2.6 Literature on autonomy as a normative ramework for regulation of advance directives 56

2.7 Literature on critique of the common law 68

2.8 Literature on critique of the advance directive legislation 72

2.9 Original and significant contributions to knowledge 76

PART PUBLISHED PAPERS 82

Chapter 3 Law, Autonomy and Advance Directives 83 Chapter 4 - Do the Courts Practise What They Preach? 1 08 Chapter 5 - Eroding Autonomy Through Statutory Reform 1 56 Chapter 6 Reusing Advance Reusals . 1 85 Chapter 7 - A Comparative Statutory Analysis 2 1 9

PART - GENERAL DISCUSSION . .. 246

Chapter 8 - Discussion .... .. .. .. 247

8 1 Main features linking the publications cumulative effect of the papers . 247

8 2 Original and signiicant contributions to knowledge .. .. 262

8.3 Final ren1arks 266

PART - APPENDICES 268

Appendix A Statement of Contribution of Co-Authors for 'Law, Autonomy and Advance Directives ' Thesis by Published Paper .. . . 269

Appendix B - Statement of Contribution of Co-Authors for 'Reusing Advance Reusals ' Thesis by Published Paper. . . .. .. .... 2 7 1 BIBLIOGRAPHY . .. .. .. .. . . ... ... .. .. 273

STATEMENT OF ORIGINAL AUTHORSHIP

The work contained in this thesis has not been previously submitted for a degree ordiploma at any other higher education institution To the best of my knowledge andbelie, the thesis contains no material previously published or written by anotherperson except where due reference is made

Signature:

Date:

to complete this thesis and their encouragement during difficult stages.

Secondly, thanks to my co-authors, Ben White, Ben Mathews and Michelle Howard.Research collaboration is one o the most enjoyable aspects of academic life, and itwas satisfying to write two ofthe articles in my thesis with co-authors

I also acknowledge the contribution o f the broader academic community whichmakes postraduate study possible Academics regularly and sellessly invest time

by supervising postgraduate research students, participating in final seminar panelsand examining theses Without this investment, postraduate study would rind to ahalt Thanks also to the library staff, Susan Carter and Michael Unwin, who assisted

me on numerous occas ns

Thanks to Jim, Kaley and Jessica who provided support through the long PhD

j ourney They made sacrifices and celebrated the successes at many stages along theway Finally, I would like to acknowledge my parents, Ron Willmott and ShirleyWillmott, who have supported and encouraged me in all of my endeavours As ever,thanks to my dad who proofed the thesis in his usual thorough fashion

I dedicate this thesis to Adelaide Rose who will never be forgotten

PART 1: INTRODUCTION AND LITERATURE

REVIEW

CHAPTER 1- INTRODUCTION

1.1 Description of the research problem, overall objectives

and speciic aims

Adults who are legally competent to make decisions about medical treatmentgenerally wish to engage in the decision-making process with their doctor, andultimately to decide on a treatment plan Competent adults may also wish to makedecisions about medical treatment that they receive in the uture, ater the personloses decision-making capacity (for example, through the proression of an illnessaffecting cognitive unction or through prolonged loss of consciousness) Thesedecisions can and do requently relate to treatment that the person does not wish toreceive, including life-sustaining medical treatment Instructions about uturetreatment that an individual does not wish to receive can be made in an advancedirective which is an oral or written statement giving instructions about medicaltreatment The issue of providing instructions about the withholding or withdrawing

of medical treatment is becoming increasingly important for two reasons First, thepopulation is ageing, so that more individuals are likely to experience loss ofdecision-making capacity at some uture time Secondly, advances in medicalscience mean that it is increasingly possible for medical practitioners to keep aperson alive ater the person has lost the capacity to make decisions about whatmedical treatment he or she wishes to receive

Yet, there is surprisingly little research into the nature and justifiability of existinglegal regimes about what an individual can do to make decisions about reu inguture medical treatment in such situations, which will bind medical practitioners andothers Some research has considered cmmnon law principles governing advancedirectives, and has remarked on the reluctance of the judiciary to follow advancedirectives that reuse life-sustaining medical treatment However, there has not been

a comprehensive review of all common law decisions in Australia and Englandconcerning advance directives that reuse treatment Further, there has not been a

comprehensive examination o f why advance directive legislation was enacted inAustralia, or of how these schemes operate Nor has there been an evaluation,through legal or theoretical critique, of the extent to which the comon law andlegislative schemes promote (or restrict) individual autonomy.

This thesis identifies and comprehensively reviews the publicly available commonlaw decisions on advance directives in Australia and England, reviews the relevantparliamentary debates to examine why advance directive legislation was enacted inthe various Australian jurisdictions, examines how those statutory schemes operate,and undertakes a legal critique of the common law and a critical evaluation of theextent to which existing common law and statutory regimes promote autonomy

The principal objectives of this research are to identify how advance directives thatreuse life-sustaining medical treatment are regulated by the common law inAustralia and England and legislation in Australia, and to critically evaluate theextent to which this regulation promotes the value of autonomy The research isconcerned with a specific medico-legal context The research investigates thesituation that arises when a person has made a decision in advance (trough anadvance directive) to reuse life-sustaining medical treatment should a particularmedical situation eventuate, in circumstances where that situation does eventuate andthe person has then lost the capacity to make treatment decisions The principalobjectives contain three more specific objectives

The irst objective is to select a nonnative ramework against which to evaluate themodels of legal regulation Informed by the principles that underpin the co1 nonlaw and legislative regimes, the ramework of autonomy is identified as a possibletool for this purpose Once identiied, the principle of autonomy is urther explored

to test whether there is su icient justification for it to be used as a tool against w ich

to evaluate models of legal regulation This urther research suggests that there arebroader grounds to justify its use as an evaluative tool While my thesis does notsuggest that autonomy is the only organising principle which could be used for thispurpose, it concludes that it is at least a defensible one

The second objective is to identify and synthesise both the common law in Australiaand England, and legislation on advance directives that operate in the variousAustralian States and Territories This analysis involves a consideration of whenadvance directives will be valid, when they can be completed, when they canoperate, and the circumstances in which a medical professional is excused for notcomplying with the directive.

The third objective is to critique the existing legal regimes The critique of thecommon law is undertaken at two levels The irst is a legal critique ofthe principlesapplied and the reasoning employed by judges in arriving at their decisions Thesefindings then inform a theoretical critique of the common law, to ascertain whetherthe law, as applied, promotes the principle of autonomy The statutory regimes arethen evaluated against the benchmark of autonomy The research generated romachieving the irst and second objectives is used to undertake this critique of thecommon law and legislation

1.1.3 Specifi c aims of the study

To meet the overall objectives outlined above, a number of speciic ms weredeveloped These aims are considered below

Identiying and developing an appropriate normative framework

The rst objective is to select a normative framework against which to eval ate themodels of legal regulation A number of specific aims were developed to meet thisobjective

The first aim [aim 1 1 ] for this objective is to identify those cases in Australia andEngland that considered the principles that underpin the common law on advancedirectives The relevant principles in this regard are autonomy, and sanctity of life.The common law observes that the principle of autonomy, rom which emanates aright of an individual to detennine his or her own treatment, demands that he or she

is able to reuse treatment, even if that results in the person' s death On the otherhand, the common law cases also recognise the principle of the sanctity of life Thisprinciple recognises the State's interest in ensuring the well-being of its citizens.

The second aim [aim 1 2] is to review those decisions to evaluate how the commonlaw balances the principles of autonomy and sanctity o f life, and why autonomy waschosen as the prevailing principle to guide the development of the common law whenassessing whether an advance directive that reuses life-sustaining medical treatmentshould be followed Although the courts generally note that tension exists betweenthe principles, there has not been a case involving advance directives in which acourt has decided that the sanctity of life should prevail over autonomy Indeed, in arecent Australian decision, one judge cited a famous Canadian case, noting that ' [t]odeny individuals reedom of choice with respect to their health care can only lessen,and not enhance, the value of life ' This statement emphasises the prominence ofautonomy by suggesting that it, in itself, is an important component of humanexistence which falls within the notion of sanctity of life and, therefore, deserving ofprotection

The third aim [aim 1 3 ] is to locate and review the parliamentary debates in relevantAustralian jurisdictions to detennine the legal and policy justifications for enactinglegislation on advance directives As demonstrated by that enquiry, legislativelyenshrining common law principles was the prevailing factor driving statutory reform

To this extent, the principle of autonomy that underpins the common law can be seen

to indirectly underpin the legislative regimes

The preliminary review of the cm non law and the relevant parliamentary debatesidentified autonomy as an important principle to underpin legal regulation Thefourth aim [aim 1 4] of the research is to settle upon a definition of autonomy that isadequate for the purpose of this thesis This thesis does not purport to undertake acomprehensive review of all of the philosophical and ethical literature on the variousmeanings of autonomy However, a review is carried out of the seminal literaturethat has considered autonomy in the context of advance directives, and a definition

1 Malette v Shulman (1 990) 67 DLR (4 ) 321, 334 (Robins JA) cited by McDougall J n Hunter and New England Area Health Sevice v A (2009) 74 NSWLR 88, [ 1 6]

that is satisfactory for the purpose of c itiquing legal regulation of advance directives

is chosen

The ith aim [aim 1 5] is to determine whether autonomy, as identified by thecommon law and (inferentially) in the parliamentary debates, can be justified as anappropriate ramework to underpin legal regulation of advance directives As part ofthis analysis, a sixth aim [aim 1 6] is to examine the arguments that have beenadvanced against autonomy as an appropriate standard in the context of legalregulation of advance directives, and critique whether the justification of autonomy

is sound in light of those criticisms

Identification and synthesis of the common law and statutory regimes

The second objective is to ident and synthesise both the common law in Australiaand England, and legislation on advance directives that operate in the variousAustralian States and Territories There are only a handul of cases that consider thelaw on advance directives in Australia and England, and this thesis identiies andsynthesises those decisions This process is also undertaken in relation to all of thestatutes that regulate advance directives in Australian jurisdictions In manydifferent aspects of statutory regulation, a comparative analysis across jurisdictions isalso undertaken A number of speci c aims were developed to achieve the secondobjective

The first aim [aim 2 1 ] for this second objective is to identify all of the publi lyavailable common law decisions in Australia and England that consider whether ornot an individual ' s advance directive that reuses life-sustaining medical treatmentshould be relied upon to determine treatment Once identiied, the second aim [aim

2 2] is to review those decisions to establish the relevant principles that govern when

an advance directive is valid, when it is applicable to the medical situation that hasarisen, and when a medical professional is excused for not following it

The third aim [aim 2.3] is to identify the legislation that has been enacted in theAustralian States and Territories Legislation has been enacted in six of Australia ' seight jurisdictions, Tasmania and New South Wales being the only jurisdictions

regulated by the common law alone The fourth aim [aim 2.4] for this objective is toreview those statutes to examine the way in which advance directives are regulated.Issues that are the subject of regulation are:

• formal requirements for completion of an advance directive;

• circumstances in which an advance directive can be completed;

• circumstances in which an advance directive can operate; and

• circumstances in which a medical professional is prohibited or excusedrom not complying with an advance directive

Critiquing the existing regulatory regimes

The third objective is to critique the existing legal regimes The critique that isundertaken has two components The first is a legal critique which is ca ied outpredominantly in relation to the common law Secondly, a theoretical critique isundertaken which involves evaluating the common law and legislation against thebenchmark of autonomy A number of specific aims were developed to achieve thisobjective

The irst aim [aim 3 1 ] to achieve this objective is to conduct a detailed critique o fthe common law cases This i s carried out by analysing the judgments in all thecommon law decisions that have been identified, and undertaking both a legal andsome theoretical critique of those decisions The legal analysis focuses on the legalprinciples that have been applied, and the reasoning emplo ed by the judges Thislegal critique facilitates an assessment of the extent to which some members of thejudiciary promote or restrict the exercise of autonomy by competent individuals whohave completed an advance directive that reuses treatment The purpose of thisexercise is to provide a better understanding of how, and possibly why, a particularoutcome regarding the applicability of advance directives is reached An assessmentcan then made of the extent to which in realiy the common law decisions re ect orpromote the principle of autonomy

The second aim [aim 3 2] is to identify barriers t at may exist in the absence o fstatutory regulation, which militate against a common law advance directive that

reuses life-sustaining being followed The focus here is on practical barriers such asmedical professionals being uncertain whether the drective is a valid one or whetherthe individual had capacity when he or she completed it These barriers are inaddition to those identiied as a result of the research referred to under aim 3 1 above.

The third aim [aim 3 3 ] is to conduct a detailed critique of the legislative regimesgoverning advance directives to assess the extent to which statutory provisionspromote or restrict the exercise of autonomy by competent individuals

The first objective of selecting a normative ramework against which models of legalregulation can be evaluated is achieved through meeting the specific aims ofidentiying and reviewing relevant cases, parliamentary debates and legislation toidentiy autonomy as the underpinning regulatory principle, selecting an appropriatedeinition o f autonomy and examining whether that principle can be defended as anormative ramework in the context of the legal regulation of advance directives

The second objective of identifying and synthesising the common law and legislation

is achieved through the speciic aims of identifying all publicly available commonlaw decisions in Australia and England, all the relevant legislation in Australia andreviewing that primary material to understand how the various regulatory regimesoperate

The third objective of critiquing the existing legal regimes is achieved by the specificaims of analysing the judgments in the case law to understand how and whydecisions are made, identifying other practical barriers that may militate againstcommon law directives being followed, and critiquing both the common law and thelegislative regimes against the benchmark of autonomy.

The research that has been undertaken to achieve the stated objectives has identifiedproblems with existing models of legal regulation for individuals who want to make

an advance directive that reuses life-sustaining medical treatment The findings arethat existing methods of regulation need to be modiied to enable competent adults tomake advance directives that reuse life-sustaining medical treatment, which willbind health professionals and others, and thereby promote individual autonomy

papers

There are several purposes of this section of the chapter First, the five researchpapers that comprise the thesis are identified Secondly, the interrelation of theresearch papers is detailed, explaining how they proress rom one to the other, andhow they form a cohesive body of literature This exercise is intended to providecontinuity for the entire thesis Finally, this section describes how the various papersachieve the objectives and aims that were articulated in section 1 1 of this chapter

The next section of this chapter (section 1 3) contains a table summansmg theinformation that is provided in this section The table provides an overview of theobjectives and aims of the thesis, and sets out the sections of the papers that achievethose objectives and aims

The thesis is comprised of the following five published papers:

1 Lindy Willmott, Ben White and Ben Mathews, 'Law, autonomy and advancedirectives ' (20 1 0) 1 8 Journal ofLaw and Medicine 366 (referred to as 'Law,autonomy and advance directives')

2 Lindy Willmott, 'Advance directives reusing treatment as an expression o fautonomy: D o the courts practise what they preach? ' (2009) 3 8(4) CommonLaw World Review 295 (referred to as 'Do the courts practise what theypreach? ')

3 Lindy Willmott, 'Advance directives to wit old life-sustaining medicaltreatment: Eroding autonomy through statutory reform' (2007) 1 0 lindersJournal ofLaw Reform 287 (referred to as 'Eroding autonomy')

4 Lindy Willmott, Ben White and Michelle Howard, ' eusing advancereusals: Advance directives and life-sustaining medical treatment' (2006) 3 0Melboune Universiy Law Review 2 1 1 (referred to as 'Reusing advancereusals ')

5 Lindy Willmott, 'Advance directives and the promotion of autonomy: Acomparative Australian statutory analysis' (20 1 0) 1 7 Jounal of Law andMedicine 5 5 6 (referred to as 'A comparative Australian statutory analysis')

This thesis comprises five chapters that are integrally linked and which, together,achieve the objectives and aims of the thesis As will be demonstrated in thefollowing analysis, there is a close correlation between the ive papers, whenconsidered as an integrated whole (rather than individually), and the three objectivesand associated aims identiied in the preceding section There is also a loosecorrelation between the five papers and the objectives and aims which may behelpul to identify at the outset

Correlation between objectives and papers

Objective 1 is to select a normative ramework against which the models of legalregulation can be evaluated To a large extent, the st paper, 'Law, autonomy andadvance directives' contributes to this objective

Objective 2 is to identi and synthesise the common law in Australia and Englandand statutory regimes in Australia on advance directives The common law isexamined predominantly in paper two, 'Do the courts practise what they preach? ' ,while the statutory regimes are considered in the third, fourth and fith papers,'Eroding autonomy' , 'Reusing advance reusals ' and 'A comparative Australianstatutory analysis '

Objective 3 is to critique the existing legal regimes A s for objective 2 , the co monlaw is critiqued predominantly in paper two, 'Do the courts practise what theypreach? ' , while the statutory regimes are critiqued in the third, fourth and fithpapers, 'Eroding autonomy', 'Reusing advance reusals ' and 'A comparativeAustralian statutory analysis '

Overlap of material across papers

A thesis by publication requires the published papers to be closely linked, and toestablish and develop a thesis In this kind of integrated work, there will inevitably

be a degree of repetition of some material throughout the papers The followingexample illustrates how this overlap can occur In this thesis, the common lawgoverning advance directives was central to all three objectives: selecting thenormative amework of autonomy, identifying and synthesising the co on lawprinciples, and critiquing those principles Accordingly, it was necessary to considerthe common law principles that regulate advance directives in more than one paper.These common law principles were reviewed predominantly in the second paper,'Do the courts practise what they preach? ' This p aper outlined the governingprinciples, and examined in depth various aspects of the common law that hasreceived judicial consideration Common law principles were also described (orreferred to), albeit to a lesser extent, in the other four papers In the st paper,

'Law, autonomy and advance directives' , autonomy is positioned as the normativeramework for the thesis, and it was necessary to consider the common lawjudgments to the extent that comments were made about how autonomy underpinnedthe law Further, in papers three, four and ive, where the focus was on reviewingthe statutory models of regulation, common law principles were considered tofacilitate a comparative analysis between the common law and statutory regimes.Where common law principles were considered in a lin ed context (as in papers one,three, four and five), they were not examined in the same depth as was undertaken inthe primary work (in this case, in paper two).

The purpose of this preliminary comment is to explain the need for some level ofrepetition across the published papers As indicated, this is unavoidable and indeedessential, given the need for the five papers to represent a cohesive and integratedbody of scholarship on a topic that is suitable for doctoral analysis

fifth papers

The first paper, 'Law, autonomy and advance directives ', and sections of the fithpaper, 'A comparative Australian statutory analysis',2 are central to the development

of autonomy as the normative ramework that underpins this thesis

'Law, autonomy and advance directives' serves several un tions As a preliminarymatter, the paper settles on a definition of autonomy that is appropriate in the context

of regulating advance directives The paper notes that there are many different viewsabout what is meant by the principle of autonomy, but the deinition chosen for thepurpose of the ist paper is that of Raanan Gillon's:

Autonomy (literally, self rule) is, in summary, the capacity to think, decide,and act on the basis of such thought and decision reely and independently andwithout hindrance.3

2 Lindy Willmott, 'Advance directives and the promotion of autonomy: A comparative Australian statutory analysis' (2010) 17 Jounal of Law and Medicine 556, the relevant sections of this paper being: ' Expressed significance of autonomy in common law and statutory regulation ' ; and ' Essence of autonomy at common law and statutory regulation'

Secondly, the paper identiies the role that autonomy plays at common law Thisinvolves a consideration o f the legal principles that are relevant in determiningwhether an advance directive is valid and applicable to the medical situation that hasarisen It also reviews the relevant judgments to distil the principles that thejudiciary consider to be relevant to guide lawmaking in this field That reviewconcludes that the principle of autonomy has been expressed to prevail over that ofsanctity of life when considering a competent adult 's right to reuse treatment,whether contemporaneously r in advance of the medical situation arising.

The third and most substantial unction of the paper is to consider whether theprinciple of autonomy, identified by the common law as the relevant principle tounderpin legal regulation, can be justiied It is argued that this approach can bejustified on the following three grounds, each of which is considered in detail in thepaper:

1 That the principle o f autonomy is consistent with the principles and valuesthat are prioritised in a liberal democracy;

2 That the principle of autonomy is consistent with prevailing principlesmedical ethics discourse; and

3 That the principle of autonomy consistent with the common law thatgoverns contemporaneous (rather than advance) reusals of life-sustainingmedical treatment

As part of its justification o f autonomy as an appropriate nonnative ramework, thepaper engages with literature that is critical of autonomy as an organising principle tojustify the regulation of advance directives These criticisms, which are made bothrom a theoretical and practical perspective, are explored and reasons advanced as towhy these criticisms should not prevent autonomy rom operating as an underpinningprinciple The arguments that are considered in this paper are that:

3 R Gillon, 'Autonomy and the principle of respect for autonomy' ( 1 985) 290 British Medical Journal

1 806, 1 806 extracted in SL Lowe, ' Autonomous agency and consent in the reatment of the term nally ill'

n H Maehle and J Geyer-Kordesch (eds), Historical and Philosophical Perspectives on Biomedical Ethics: From Paternalism to Autonomy (Aldershot, 2002) 129, 1 30.

1 An ad ance directive made by a competent adult may lack ' moral authority'

to bind a person who later loses capacity and who may have different views

or opinions rom the competent adult who completed the advance directive

2 There may be some models besides autonomy - for example, a model thatconsiders the adult's condition, prognosis, views of the adult ' s loved ones andconcerns of the adult ' s broader community, that are better suited to underpinthe regulation of advance directives

3 Most individuals have not received suficient information t o enable them tosatisfactorily complete an advance directive that purports to cover a widerange of uture medical contingencies

4 Competent adults may change their choice of treatment (or non treatment)over a period of time This 'instability of patient choice' may not easily beaccommodated if advance directives are binding

5 An advance directive may not, in fact, be a true reflection of the competentadult 's wishes

6 An advance directive rarely provides helpul information to medicalprofessionals

The irst paper contributes to the objective one by establishing autonomy as anappropriate principle against which legal regulation should be assessed It achievesthe specific aims of identiying and reviewing common law judgments that considerunderpi ing principles (aims 1 1 and 1 2), justifying autonomy as an appropriatenormative ramework (aim 1 5), and addressing criticisms of autonomy in thiscontext (aim 1 6)

The fith paper, 'A comparative Australian statutory analysis ' , is relevant toidentiying autonomy as a normative ramework in two ways First, in the same waythat the first paper reviewed the common law judgments to determine the principlethat underpinned the common law, this paper reviews the parliamentary debates in allAustralian jurisdictions that have enacted legislation on advance directives Thatreview identiies uncertainty about applicability of common law principles as themajor driver for statutory reform Inferentially, the desire to statutorily enshrine thecommon law recognises the importance and significance of the principle ofautonomy in the regulation of advance directives The second aspect of this paper

that is relevant to the firs objective is the attempt to distil the ' essence' of autonomy

at common law In other words, the paper attempts to give meaning to the term'autonomy' in the context of legal regulation of advance directives Deining whatthe concept means in an applied context is critical when it is being used as a standardagainst which to assess legal regulation

The fith paper also contributes to objective 1 of establishing autonomy as anormative ramework It achieves the speciic aims of locating and reviewingparliamentary debates to establish the justification for legislative enactment (aim 1 3)and of defining the meaning of autonomy that is appropriate for this thesis (aim 1 4)

1.2.4 Synthesis and critique of the common law: the second, fourth

and fifth papers

The second paper, 'Do the courts practise what they preach? ', and sections of thefourth paper, 'Reusing advance reusals',4 consider the common law regime thatgoverns advance directives that reuse life-sustaining medical treatment A section

of the fith paper, 'A comparative Australian statutory analysis ' ,5 is also relevant inidentiying practical barriers that ay hinder common law advance directives rombeing fo llowed and, thereby, may work against the promotion of autonomy

The fourth paper, 'Reusing advance reusals ', deals with the common law in tworespects It sets out the common law principles that govern the validity andapplicability of common law advance directives In addition, it considers thecircumstances in which it is permissible for a medical professional not to complywith a reusal of treatment as set out in an advance directive A medical professional

is excused for non-compliance with a common law directive where the personmaking the directive did not intend (or possibly did not intend) it to apply in thesituation that has later arisen This will occur the following circumstances:

4 Lindy Willmott, Ben White and Michelle Howard, 'Reusing advance reusals: Advance drectives and life sustaining medical treatment' (2006) 30 Melboune Universiy Law Review 211, the relevant sections of this paper being: 2.1 Common law advance directives; and 3 Excuse for non-compliance with common law advance drectives.

5 Willmott, 'Advance directives and the promotion of autonomy: A comparative Australian statutory analysis ' , above n 2, the relevant section of this paper being: 'Practical barriers to recognising directives at common law'.

1 There has been a change in circumstances since the advance directive wascompleted, such that the adult would not have intended the directive to apply

in the changed circumstances;

2 The advance directive is expressed in tenns that are clear or uncertain;

3 The advance directive is ased on incorrect information or on in incorrectassumption; and

4 The advance directive does not give a direction in the circumstances that haveansen

'Reusing advance reusals' contributes to objective two by explaining the commonlaw principles that goven advance directives It achieves the specific aim ofreviewing the common law decisions to establish the relevant principles that governwhen an advance directive is valid, when it is applicable to the medical situation thathas arisen, and when a medical pro fessional is excused for not following i (aim 2.2)

The second paper, 'Do the courts practise what th y preach?' undertakes a review ofall of he publicly available decisions in Australia and England in which courts (ortribunals) have been asked to deliberate on whether an advance directive thatpurports to reuse life-sustaining medical treatment should be followed This paperbuilds on 'Reusing advance reusals' which sets out the common law principles andwhich observes that those principles are consistent with the principle of autonomy.'Do the courts practise what they preach? ' takes the common law analysis urther byanalysing the judgments in the cases, and exploring how courts (and tribunals) reachdecisions about whether or not an advance directive that reuses treatment willprevail The paper undertakes a legal critique of the judgments There are two limbs

to this critique a critique of legal principles that are espoused and applied and acritique of the application of legal principles to the facts of the cases

There are two components of this irst limb of the legal critique The firstcomponent explores circumstances in which the courts have developed the commonlaw on advance directives in a way that is inconsistent, or at least does not sitcomfortably, with accepted authority One such circumstance is the suggestion insome decisions that an advance directive should be based on sufficient information

Another is the approach taken in some cases in relation to issues of proo Asexplained in 'Do the courts practise what they preach?' , neither of these propositionscan be supported rom an application of legal principle The second component ofthe first limb of the legal critique is an examination of how, in some cases, theadjudicating courts or tribunals have simply applied incorrect or irrelevant legalprinciples in making their decisions Again, these are explored in depth in 'Do thecourts practise what they preach? '

The second limb of the legal critique focuses not o n whether the legal principle is acorrect one, but how that legal principle is applied to the facts of the case The paperargues that adjudicating courts and tribunals, in some cases, take a strainedinterpretation of facts to achieve what the adjudicator may warrant to be a moreacceptable outcome

'Do the courts practise what they preach? ' concludes that the errors in, or at least thequestionable approach taken in relation to, the development and choice o f relevantlegal principle, and way in which the law is applied to the facts raise a question aboutwhether the application of the common law by judicial and quasi-judicial bodies inpractice promotes autonomy The question that is raised is supported by the fact thatthe rhetoric employed and approach taken in drating judgments, reveals a preferencefor the principle of sanctity of life over that of autonomy In this way, the secondpaper also undertakes a level of theoretical critique of the extent to which theapplication of the common law by some members of the judiciary promotesautonomy

'Do the courts practise what they preach? ' contributes to objective three byundertaking a legal and a limited theoretical critique of the common law, as applied

by the judiciary The paper achieves the specific aims of conducting a detailedreview and critique of all of the publicly available common law cases and analysingthe judgments to assess the extent to which some members of the judiciary promote

or restrict the exercise of autonomy by competent individuals (aim 3 1)

One section of paper five, ' A comparative Australian statutory analysis ' , is alsorelevant to the critique of common law In a section o f the paper entitled 'Practical

barriers to recogmsmg advance directives at common law', some importantobservations were made about why, in practice, an advance directive may not befollowed, despite the fact that the comon law principles are largely consistent withthe principle of autonomy This section of the paper contributes to objective three byassessing the common law, as it is applied or inte reted in medical practice, againstthe benc ark of autonomy The paper achieves the specific aim of identiyingbarriers that may exist in the absence of statutory re lation which militate against acommon law advance directive that reuses life-sustaining treatment being followed(aim 3 2).

1.2.5 Synthesis and critique of the statutory regimes: the third, fourth

and fifth papers

The third, fourth and fith papers examine in detail the six legislative regimes thatoperate in Australia, and review those regimes against the principle of autonomy.The jurisdictions that have enacted legislation are the Australian Capital Territory,the Northern Territory, Queensland, South Australia, Victoria and Western Australia.The jurisdictions that are govened solely by the common law are New South Walesand Tasmania

The third paper, 'Eroding autonomy', provides an overview of the statutes in allAustralian jurisdictions that have enacted legislation Particular focus is placed onthe Queensland legislation which is used as a case study on the extent to whichstatutory enactment can restrict autonomy The paper critiques the legislativeregimes against the common law and also against the principle of autonomy It alsoprovides examples of how statutory restrictions have more adverse consequences forsome individuals over others in terms of their impact on autonomy

The fourth paper, 'Reusing advance reusals ' builds on the review undertaken m'Eroding autonomy' It goes urther b y considering, in more depth, thecircumstances in which a medical professional is excused rom following an advancedirective that reuses life-sustaining medical treatment This issue is an importantaspect of statutory regulation of advance directives because it has the potential toimpinge significantly on a competent person's right to dictate uture treatment The

paper concludes that an individual can be less confident that a medical pro fessionalwill comply with his or her advance directive than if the directive were governed bythe common law.

'Reusing advance reusals' contributes to objective two of reviewing the legislativeregimes in six Australian jurisdictions by analysing an important legislative groundfor a medical professional not complying with an advance directive The paperachieves the speciic aim o f reviewing the statutes to examine this aspect ofregulation of advance direc ives (aim 2 4) 'Reusing advance reusals' alsocontributes to objective three of assessing the existing legal regimes against thebenchmark of autonomy The paper achieves the speciic aim o f conducting adetailed review and critique o f a critical aspect of statutory regulation which directlyimpacts on the extent to which an individual is able to exercise autonomy (aim 3 3 )

The fith paper, 'A comparative Australian statutory analysis' , builds o n the third andfourth papers, but is also broader in scope It provides a comprehensive review of allaspects of legislation in all jurisdictions There are a number of components of thestatutory regimes that are considered:

1 Why legislation was enacted in the various jurisdictions;

2 The kinds of statutory limitations or restrictions that are imposed onindividuals who choose to complete an advance directive that reuses life­sustaining medical treatment; and

3 The extent to which the restrictions that are imposed by legislation can bejustified on the basis of promoting an individual' s autonomy

'Eroding autonomy', 'Reusing advance reusals ' and 'A comparative Australianstatutory analysis' all contribute to objective two of analysing in detail the legislation

on advance directives in the various Australian States and Territories These papersachieve the speciic aim of reviewing the statutes to examine the way in whichadvance directives are regulated (aim 2.4) 'Eroding autonomy', 'Reusing advancereusals ' and 'A comparative Australian statutory analysis' also contribute toobjective three of critiquing the existing legal regimes against the benchmark of

autonomy The papers achieve the specific aim of conducting a detailed review andcritique of the legislative regimes gove ing advance directives to assess the extent

to which statutory provisions promote or restrict the exercise o f autonomy bycompetent individuals (aim 3 3 )

1.3 Account of research progress: Linking the objectives,

aims and research papers

The table below is designed to provide a quick overview of how the objectives andaims of the research are addressed in the ive research papers that comprise thethesis

The principal objectives of this research are to identiy how the common law inAustralia and England and legislation in Australia regulate advance directives thatreuse life-sustaining medical treatment, and to critically evaluate the extent to whichthis regulation promotes the value of autonomy These principal objectives havebeen divided into three more specific objectives which appear in the let-handcolumn of the table The aims that were developed to achieve those objectives weredescribed earlier and are included in the middle column The sections of the papersthat address the objectives and associated aims are listed in the right-hand co lumn

T o select a To identify those cases in

ramework against considered the principles that

which to evaluate underpin the common law on

the models of legal advance directives

regulation

Section of relevant

p aper that achieves objective and aim Paper1 :

• II C 'Autonomyunderpinning legalrecognition ofadvance directives'

Objectives Aims

Aim1.2:

To review those decisions toevaluate how the common lawbalances the principles ofautonomy and sanctity of life,and why autonomy was chosen

as the prevailing principle toguide the development ofthecommon law when assessingwhether an advance directivethat reuses life-sustainingmedical treatment should befollowed

A im 1 3:

To locate and review theparliamentary debates inrelevant Australian jurisdictions

to determine the legal and policyjustifications for enacting

legislation on advancedirectives

A im 1 4:

To settle upon a definition o fautonomy that is adequate forthe purpose of this thesis

Aim 1 5:

To determine whetherautonomy, as identified by thecommon law and (inferentially)

in the parliamentary debates,can be justiied as an

appropriate ramework tounderpin legal regulation ofadvance directives

Section of relevant paper that achieves obj ective and aim Paper1 :

• II C 'Autonomyunderpinning legalrecognition of advancedirectives '

Paper5:

• 'Expressedsignificance ofautonomy in commonlaw and statutoryregulation'Paper5:

• 'Expressedsignificance ofautonomy in commonlaw and statutoryregulation'

• Ill 'Autonomyjustified legalrecognition of advancedirectives '

Objectives Aims

Aim1 6:

To examine the arguments thathave been advanced againstautonomy as an appropriatestandard in the context of legalregulation of advance directives,and critique whether the

justification of autonomy issound in light of thosecriticisms

Obiective two : Aim2 1 :

T identify and To identify all of the publicly

synthesise both the available common law decisions

common law in in Australia and England that

Australia and consider whether or not an

England, and individual's advance directive

legislation on that reuses life-sustaining

advance directives medical treatment should be

that operate in the relied upon to determine

various Australian treatment

Section of relevant paper that achieves obj ective and aim Paper1 :

IV 'Responding tocritiques of autonomyand advance

directives '

Paper2:

• II 'The common law(as enunciated by thejudiciary) '

• Appendix

Paper1 :

• II A 'Validity ofadvance directives'

• II B 'Applicability ofadvance directives'Paper3:

• Ill 'Advancedirectives at commonlaw'

Paper4:

• 2 1 ' Common lawadvance directives'

• 3 'Excuse for noncompliance withcommon law advancedirectives '

Obj ectives Aims

Section of relevant paper that achieves obj ective and aim Paper2:

• Ill ' Statutory reform'

Paper3:

• II 'Advance healthdirectives inQueensland '

• IV 'Advancedirectives in otherstatutory jurisdictions'

Paper4:

• 2.2 ' Statutory advancedirectives '

• 4 ' Excuse for compliance withstatutory advancedrectives '

non-Paper5:

• Table 1 'Acomparison ofadvance directiveprovisions by statutoryjurisdictions '

Obj ectives Aims

Obiective three: Aim3 1:

T o critique the To conduct a detailed critique of

existing legal the common law cases This is

judgments in the common lawdecisions that have beenidentified, and undertaking both

a legal and some theoreticalcritique o f those decisions

Section of relevant paper that achieves objective and aim Paper2:

• IV 'The common law(as applied by thejudiciary) - anoverview '

• V 'Unprincipledevolution of co1mnonlaw principles'

• VI ' Inappropriateadjudication byjudicial or quasi-judicial bodies '

• VII ' Strainedinterpretation of facts '

• VIII 'Rhetoric andapproach in judgmentsreveal preference forthe principle ofsanctity of life'

Paper3:

• IIID ' Judicialapproach to advancedirectives aboutwithholding andwithdrawing life-sustaining measures '

Paper4:

• 6 ' Judicial approaches

to proo

Objectives Aims

Aim3.2:

To identify barriers (in addition

to those identiied under aim

3 1 ) that may exist in theabsence of statutory regulation,which militate against a

common law advance directivethat reuses life-sustainingtreatment being followed

by competent individuals

Section of relevant paper that achieves obj ective and aim Paper5:

'Practical barriers torecognising advancedirectives at comonlaw '

Paper3:

• V ' Critique oflegislative regulation

of advance directives:

a statutory case study'

Paper4:

• 5 'A comparativeanalysis '

Paper5:

• ' Statutory regimes: anoverview '

• 'Requirements ofcapacity and absence

of vitiating factors'

• 'Requirement toprovide information'

• ' Circumstances inwhich an advancedirective can becompleted'

• 'Circumstances inwhich an advancedirective can operate'

• 'Circumstances inwhich an advancedirective can beignored'

1.4 Scope of the thesis

This thesis explores the extent to which legal regulation allows competent adults tomake advance directives reusing life-sustaining medical treatment that will bindhealth professionals and others at a later time There is a range of issues that areassociated with or relevant to this topic, but do not fall within the ambit or scope ofthis thesis These issues are described below

Advance directives can be, and are, completed for a range of reasons Most of theacademic literature and debate focus on directives that reuse life-sustaining medicaltreatment, but advance directives have other roles They can set out treatmentpreferences including medical treatment, in addition to life-sustaining treatment, thatthe individual does not want to receive They can also specify the treatment that he

or she does wish to receive should a particular medical situation arise The latterscenario gives rise to another controversial issue, namely the extent to which anindividual can require the provision of treatment that medical professionals regard asclinically utile Another form or style of advance directive is one in which anindividual sets out more general statements regarding 'outcome preferences ' ratherthan specifying details of treatment that he or she wishes to receive or reuse

Finally, there is a body of literature that considers 'psychiatric advance directives 'which are generally completed by individuals who suffer rom mental illness 8 Such

6 At common law, there is no obligation on a medical professional to provide treatment that is clinically utile: R (Burke) v General Medical Council [2006] QB 273 , 3 0 1 -2; Airedale NHS Trust v Bland [ 1 993] AC 789, 858-9, 869, 884-5, 898; Auckland Area Health Board v Attorney-General [ 1 993] 1 NZLR 2 3 5 , 25 1 ; Messiha v South East Health [2004] NSWSC 1 061 This obligation will not alter because the request for such treatment is contained in an advance directive The issue of requests for treatment in advance directives was considered by the Irish Law Reform Commission in Bioethics: Advance Care Directives, Consultation Paper (2008) 14- 1 6.

7 This style of advance directive is one that is encouraged by The Clinical, Technical and Ethical Principal Committee of the Australian Health Ministers ' Advisory Council, in A National Framework for Advance Care Directives (20 10) 43.

8 See, for example, T Bogdanoski, 'Psychiatric advance directives: The new frontier in mental health law reform in Australia' (2009) 1 6 Journal of Law and Medicine 89 1 ; B Sheetz, 'The choice to limit choice: Using psychiatric advance directives to manage the effects of mental illness and support self­ responsibility' (2006) 40 University of Michigan Jounal of Law Reform 40 1 ; T Exworthy, 'Psychiatric advance decisions an opportunity missed' (2004) Journal of Mental Health Law 1 29; S Gevers, 'Advance directives in psychiatry' (2002) 9 European Jounal of Health Law 1 9; JA Dunlap, 'Mental health advance directives: Having one's say?' (2000) 89(2) Kentucy Law Jounal 3 27; T

a directive allows the person, while well, to state treatment preferences for when he

or she later loses competence to make medical decisions Difficult issues can arisewith this kind of directive if the individual, at a later time when he or she becomesunwell, strongly objects to the treatment decisions recorded in the advance directive

Many commentators argue that there are serious practical im ediments to the uptakeand use of advance directives, particularly in the context of directives that reuse life­sustaining medical treatment Research indicates that competent individuals arereluctant to complete advance directives9 despite, in some cases, significantinvestment of unding in projects designed to encourage their completion 1 Thereare also a range o f concerns about the operation of advance directives once they arecompleted, and these are considered in chapter 2

The focus of this thesis is on the legal regulation of advance drectives, and theextent to which that regulation permits a person to give a directive that reuses lifesustaining medical treatment The fact that there may be some dificulties about theprevalence or drating and use of the directives in clinical practice is only

Foukas, ' Psychiatric advance directives: Part 1' (1999) 8(1) Australian Health Law Bulletin 13; E Gallagher, ' Advance drectives for psychiatric care: A theoretical and practical overview for legal professionals' (1998) 4(3) Psychology, Public Policy, and Law 746; A Macklin, ' Bound to f eedom : The Ulysses contract and the psychiatric will' ( 1987) 45 Universiy of Toronto Faculy of Law Review

37 For an examination of the role that 'mental health' advance drectives can play where an ndividual has been diagnosed with Alzheimer's disease, see L Brodoff, 'Planning for Alzheimer 's disease with mental health advance directives ' (2009) 17 Elder Law Jounal 239

9 See, for example, M Brown and S Jarrad, 'Putting the powers in place: Barriers for people with memory loss in planning for the uture' (2008) 15 Journal of Law and Medicine 530; S Sahm, R Will and G Hommel, 'Attitudes towards and barriers to writing advance drectives amongst cancer patients, ealthy controls, and medical staff' (2005) 31 Jounal of Medical Ethics 437; K Kirschner, 'When written advance directives are not enough' (2005) 21(1) Clinics in Geriatric Medicine 193

1 0 See, for example, a proj ect carried out in the United States in 1989-1991 entitled, Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) The project was designed to improve end-of-life decision making to address concerns about the requency

of prolonged processes of dying This proj ect and some of the literature in relation to it is referred to

in eh 2, s 2.2.3 Some of the literature in the field also suggests ways to improve the uptake of advance directives: see, for example, B Lo and R teinbrook, 'Resuscitating advance directives ' (2004) 164 Archives of Internal Medicine 1501; K Covinsky et al, 'Communication and decision­ making in seriously ill patients: Findings of the SUPPORT project' (2000) 48(5) Jounal of the American Geriatrics Society S l 87; N Cantor, 'Making advance directives meaningul' (1998) 4(3) Psycholoy, Public Policy, and Law 629; L Emanuel et al, 'Advance directives for medical care - a case for greater use' (1991) 324(13) The New England Journal of Medicine 889 See also research reviewed by B Brown in ' The history of advance directives A literature review' (2003) 29(9) Jounal

of Gerontological Nursing 4

1 1 Ch 2, s 2.6.2

tangentially relevant to the thesis Provided the practical issues that exist are not sooverwhelming or undamental as to challenge the core notion that competentindividuals should be able to reuse treatment in advance, they are issues to beresolved at another time.

This thesis, therefore, does not purport to comprehensively describe the wide-rangingcriticisms o f a practical nature that are levelled at advance directives Instead, itraises the major impediments as revealed in the literature, and concludes that theseare not sufficient to justiy removing the right of a competent individual to complete

an advance directive that reuses life-sustaining medical treatment 1 2

As described above, this thesis explores the extent to which regulation allows acompetent adult to complete an advance directive that reuses life-sustainingtreatment n important component of the research is to determine whether, and inwhat circumstances, such directive will be binding on health professionals who areresponsible for the now incompetent individual' s care As will be demonstrated,non-compliance with a valid and applicable directive reusing life-sustaining medicaltreatment will (generally) expose the person providing treatment to potential criminaland civil liability for assault

There is an emerging body of literature that considers whether there are, or should

be, other causes of action available to the aggrieved individual who has been treatedcontrary to his or her expressed wishes 1 A consideration of the need to broadenlegal redress and the shape such remedies should take are, however, beyond thescope o f this research

There is a broader body of literature that highlights clinical challenges that can ariserom the application of the law in relation to advance directives and the more general

1 2 Lindy Willmott, Ben White and Ben Mathews, ' Law, autonomy and advance directives ' (20 1 0) 1 8 Journal of Law and Medicine 366, s V.

1 3 This literature is considered n eh 2, s 2

field of decision-making for adults who lack capacity For example, there isconsiderable literature that considers practical ways of improving the end-of-lifedecision-making process itself 14 Professional bodies such as the Australian MedicalAssociation and the Australian Medical Council have also provided assistance tomedical professionals in this ethically challenging area, 1 5 and there is commentary onthe statements that have been developed by those organisations 1 6 Some literatureengages with specific legal issues that arise in the end-of-life context which presentsparticular challenges for clinicians Such issues include the dificulty in determiningwhether an individual has capacity to make a treatment decision for him- or herself, 17the extent to which a substitute decision-maker is able to accurately predict thedecision that the patient would have made had he or she had capacity to decide ontreatment, 18 the extent to which 'not for resuscitation' decisions are informed byappropriate consultations and are legally compliant/9 and the difficulty inwithdrawi g life sustaining treatment where medical technology reveals a level ofconsciousness or awareness Finally, some literature advocates the need formedical and other health professionals to receive education and training in how to

1 4 See, for example, T Bowen, ' Using mediation in situations of withholding or withdrawing life­sustaining treatment: a New South Wales perspective' (2009) 17 Jounal of Law and Medicine 74; M Ashby, A Kellehear and B Stoffell, ' Resolving con ict in end-of-life care' (2005) 183(5) Medical Journal of Australia 230

1 5 See, for example, Position Statements developed by the Australian Medical Association includingThe Role of the Medical Practitioner in End of Life Care (2007) and The Role of the Medical Practitioner in Advance Care Planning (2006) The Australian Medical Council has also released Good Medical Practice: A Code of Conduct for Doctors in Australia (2009) [3 12 End-of-life care]

1 6 See, for example, M Parker et al, ' Two steps forward, one step back: Advance care planning, Australian regulatory f ameworks and the Australian Medical Association ' (2007) 37 Intenal Medicine Journal 637

1 For example, B Collier, C Coyne and K Sullivan (eds), Mental Capaciy: Powers of Attorney and Advance Health Directives (The Federation Press, 2005); C Stewart and P Biegler, 'A primer on the law of competence to refuse medical treatment' (2004) 78 Australian Law Jounal 325; P Biegler and

C Stewart, ' Assessing competence to reuse medical treatment' (2001) 174 Medical Jounal of Australia 522

1 8 See, for example, D Shalowitz E Garrett-Mayer and D Wendler, ' The accuracy of substitute decision makers ' (2006) 166(5) Archives of Intenal Medicine 493 ; W Chaboyer and K Forrester, ' The use of proxy-generated health status assessments in ICU survivors: the issue of quality of life ' (2000) 8 Journal of Law and Medicine 157; D Mendelson, 'Substituted consent: From lunatics to corpses' (2007) 14 Journal of Law and Medicine 449

19 For example, I Kerridge, Mitchell and C Myser, ' The decision to withhold resuscitation in Australia: Problems, hospital policy and legal uncertainty' (1994) 2 Journal of Law and Medicine

125

20 L Skene et al, 'Neuroimaging and the withdrawal of life-sustaining treatment from patients in vegetative state' (2009) 17 Medical Law Review 245